Rob Has A New Heart [Archive] - Hypertrophic Cardiomyopathy Association™ Community

Cynaburst

03-19-2006, 03:52 AM

Everybody,

I have been monitoring the website that Rob's family set up and this message was posted late on Saturday night. Please, please, please keep Rob and his family in your prayers. It sounds like he is in very serious condition and can use all of the good thoughts that we can send his way. I will keep monitoring the website for updates and will post when there is news.

To Rob, Haley, and their kids.....

We are all there with you and know that you will be celebrating soon!

Rob's Condition as of Saturday Night, 18 March
I spent the day with Rob in the ICU today. Many ups and downs.

The bleeding problem is thankfully resolved but other serious problems have presented themselves. It is no exaggeration to say that he is fighting for his life right now. He is still sedated and on the ventilator; it could be several days before they close his chest and wake him up.

The doctors are throwing everything they have at it. They tell me that Rob's problems are serious, but they've had patients in even tougher shape who survived to climb mountains and ride motorcycles. They had better be right.

Oh, and for those of us who didn't really understand why Rob needed a transplant in the first place, I had an enlightening discussion with his surgeon Dr. Plunkett. He said that a normal heart is the size of one's fist; Rob's old heart was the size of a basketball. It was squeezed into the chest cavity, pushing the lungs out of the way. The pericardium was inflamed and covered with scar tissue. Dr. Plunkett, who has done dozens of transplants, could not ever remember a bigger heart.

Rob is an absolute hero for living a life with that heart. After he started feeling really bad in mid-2003, it's astonishing that he was able to keep working all they way until Jan 2005. The fact that he could even walk our dog last Tuesday morning is mindblowing.

In closing let me thank our Donor once again. If it weren't for his gift, my husband stood no chance of ever growing old.

=Haley Thomas=

JohnM2

03-19-2006, 02:37 PM

My very best wishes are being sent to you, along with those of my wife. You will both be in our thoughts, until we here you are on the mend.

Best wishes

John & Margaret

Linda

03-19-2006, 03:08 PM

Haley - You have many prayers and well wishes coming your way. Cynthia - thanks for keeping us up to date, we will be watching closely for further news. Linda

Abbygirl2

03-19-2006, 03:35 PM

Haley, My thoughts are with you and your family. My best wishes for Rob's recovery. We'll be awaiting any updates when you are able.
Pam

Janet McClure

03-19-2006, 05:13 PM

Please know that we are praying for you. I can imagine how overwhelming this all is. Hang in there and know that you have alot of support here and we are all anxious as well and are here for you! Janet and James

dreamcatchinglady

03-19-2006, 09:15 PM

Dear Haley,
Both you and Rob are in my prayers. We are all praying for a full recovery. We are here for you.Well wishes and warm thoughts and hugs I send to you.

BlueDevil

03-19-2006, 09:54 PM

Goodness...on Monday we were e-mailing each other about me turning down that donor heart, and he expressed his frustration in waiting...and then BOOM! His wait is over, and I'm so glad to hear it!

-- T.

Laoshur

03-19-2006, 11:44 PM

I will pray for a complete and speedy recovery!

Rhoda

Reenie

03-20-2006, 12:26 AM

Rob, Haley, and family,

I'm praying that Rob's problems start to resolve themselves and Rob is up and smiling very soon. I understand the stresses and pressures of having a loved one in ICU, fully sedated, and totally unresponsive. My heart is with you.

Reenie

Cynaburst

03-20-2006, 01:27 AM

Latest update:

Rob's Condition as of Sunday Night, 19 March
Rob's problems from yesterday continued into today with a slight improvement. He is still on the ventilator and his chest is still open (and starting to look strangely normal to me). Dr. Plunkett's current plan is to close the chest on Tuesday if Rob continues to trend toward improvement. Then they can wake him up - a huge milestone. Then I can talk to my best friend about how my best friend had a heart transplant.

Thank you all for your words of encouragement. I am heartened by your blog comments and emails, though I'm sorry I won't be able to respond for a while.

=Haley Thomas=

Rene' Koenig

03-20-2006, 03:35 AM

Rob and Haley,

I'll keep you in my thoughts and prayers.

Rene'

JohnM2

03-20-2006, 10:22 AM

My thoughts and best wishes are also with you. I hope it won't be long before we here reports of improvements.

John

Pam Alexson

03-20-2006, 10:30 AM

Continued prayers going out to Rob and to Haley. Come on Tin Man you can do it!

Pam

Glen Beamish

03-20-2006, 01:26 PM

Rob and Haley, you know we are all praying and rooting real hard.

Janet McClure

03-20-2006, 06:54 PM

We are still praying for you guys and look forward to hearing from you. Hang in there and know we are here for you guys! Janet

shirleymahoney

03-20-2006, 07:35 PM

Rob you can do it , you will and will always be in my prayers Big Hugs to you

Shirley

Stuart Schwartz

03-20-2006, 10:56 PM

Rob, Haley & family,

Our thoughts and best wishes are with you.

Stuart and Barbara

karen cicconetti

03-21-2006, 01:32 PM

Great news!!! Good luck and take care.

Krean

Aimee

03-21-2006, 11:06 PM

Haley and family and Rob,

Believe in miracles and keep your faith. You are in good hands. I came through a tough transplant also and now am doing beautifully. I had many complications and was on my 5th operation to get my chest closed. I hold you in my prayers and will monitor to keep up on his status. Blessings Aimee (transplant Nov. 23rd this past Thanksgiving)

Toogoofy317

03-22-2006, 04:25 AM

Rob hang in there buddy. You always have an upbeat attitude and were able to get me out of my ruts and problems that now seem so trivial with what you are going through.

You and your family are in my thoughts and prayers.

Mary S.

Cynaburst

03-22-2006, 12:10 PM

Latests updates:

Rob's Condition as of Monday Night, 20 March

Rob is continuing to take baby steps toward improvement. But Dr Plunkett says that even small improvements can be significant, so we have something to be happy about tonight.

I think I'll stop asking the Docs when they will 'close his chest and wake him up' because their answer is always 2-3 days hence. My plan is to continue being in the ICU and to hope that I'm there when it happens.

One more thing about our Donor - Dr. Plunkett says "he was the size of a linebacker". Sounds like a good fit to me. My thoughts are with the Donor's family tonight.

Rob's Condition as of Tuesday Night, 21 March

Rob's baby steps continue in the right direction. He is still very sick but on a good trend.

A steady stream of doctors visit him throughout the day and night, including ICU Doc, Kidney Doc, Blood Sugar Doc, Respiratory Doc, Heart Doc and a bevy of Transplant Docs. My favorite question to ask them is the open-ended "So Doc, what do you think?".

Rob is no longer the sickest patient in the ICU with the arrival of a fresh lung transplantee. The beat goes on.

Cynaburst

03-23-2006, 12:19 AM

Wednesday's Update:

Wednesday, March 22, 2006
Rob's Condition as of Wednesday Night, 22 March
A couple of baby steps backwards today. One week post-op and he is still fully sedated, chest still open, still on the ventilator. One of the ICU nurses suggested that I could buy a long-term parking pass.

My crystal ball tells me that this will be a long slog, but we will have Rob back healthier than ever. He has a beautiful new heart (thank you Donor) and he's getting the best of care.

I am reading all of your blog comments, emails, cards and letters. Thank you for lifting me up.

=Haley Thomas=

eatwell

03-23-2006, 05:13 PM

Hang in there Haley, you REALLY sound so good, in spite of it all. I think of you and Rob often lifting up a prayer.
Laura

cynthia

03-23-2006, 06:25 PM

I'm thrilled Rob has a new healthy heart! what wonderful news!!

Midge Rollins

03-23-2006, 10:27 PM

Haley, I will keep both of you in my prayers. My husband said the amount of Drs. coming and going after mine was overwhelming. My heart goes out to you as a caregiver. To me that is rougher than being the patient. You must remember to take care of yourself he will need you when he wakes up.

savagenation

03-24-2006, 10:59 PM

Rob's Condition as of Thursday Night, 23 March
No significant change from yesterday. The challenge is keeping him stable throughout all the necessary procedures. They tried an echocardiogram today and his blood pressure plunged alarmingly. His ICU nurse, a veteran of a boatload of transplants, commented "Rob doesn't like to be messed with". She doesn't know how right she is!

Even though he's sedated I know he's still in there. I have been carrying on a one-sided conversation with him throughout, and every once in a while I'll get a clue that he heard me. Like today when he moved his eyes a little bit under closed eyelids. Made me feel great, although it might have been his way of telling me to pipe down.

Thank you to everyone who is helping me, Connor and Shea manage through this unsettling time. My mother has logged many miles on the miserable 405 freeway to and from her home in Northridge, our home in San Pedro and the hospital in Westwood. Glamorous it ain't.

=Haley Thomas=

Hang in there Haley, Connor and Shea. We are all praying and rooting for you guys. Always remember you are never alone in this. I pray for you guys everyday, and look forward to hear to an update on his condition, hopefully one that says, "they finally get to wake him up today". Good luck and God Bless.

CJensen

Karen P

03-25-2006, 08:17 AM

I am excited for your family and for the possibilities for Rob. It's a difficult time for all. We just celebrated my husbands one year milestone.
When I think about last year and all the ups and downs (Roy had trouble breathing on his own and coming off the vent) I shiver and can still feel the fear and uncertainty of those days. It is a brutal time. You try to stay positive. Be happy with the smallest improvements and know that those stebacks are pretty normal. My thoughts are with you.

We are having our family over today for a belated St. Patty's dinner. I will tell my clan about yours. Be certain that about 20 crazy Irish relatives will pray hard for you and your family this afternoon and I'm sure there will be at least one toast in Rob's honor.

Karen

jmurray

03-25-2006, 11:49 AM

Keep hangin' in there. We are all still praying hard for Rob and the family. Not just the people that are posting but it looks like this thread has been checked almost 1000 times! There are alot of people pulling for you.

Take care,

John

karen cicconetti

03-25-2006, 11:21 PM

Dear Haley

Keep talking to Rob I'm sure he hears you, I know I did. Some say that when your that sedated you might not here whats gong on, but I did I had total recall from the moment they stopped anestesia, I felt all the love, the touches and heard every word. I even got a nurse in trouble because he said something not very nice. I know Rob feels your love and probably hears it to. Take care of yourself and send my love to Rob.

Karen

Cynaburst

03-26-2006, 05:03 PM

Sunday, March 26, 2006
Rob's Condition as of Sunday Morning, 26 March

A very rough couple of days. Rob continues to fight infection at the same time he's immunosuppressed to address organ rejection. They're throwing the kitchen sink at him in terms of both antibiotics and anti-rejection meds. Signs are they are making progress on the organ rejection.

Dr Plunkett attempted to close Rob's chest on Friday afternoon, but couldn't because of the level of infection and because of some rips and tears in the lung tissue. He got a real good look at the chest cavity, cleaned it up, repaired the damage and left the chest open (covered in the sterile saran wrap). He'll try again in a couple of days.

Rob and I are continuing our one-sided conversations during those moments when he's floating near the surface. I know he can hear me. On Friday night I promised him a motorcycle and his eyebrows arched up!

=Haley Thomas=

Stuart Schwartz

03-29-2006, 10:09 AM

Tuesday, March 28, 2006
Rob's Condition as of Tuesday Night, 28 March
Chest closed!

Rob's chest was successfully closed yesterday. I dared not write about it until I could report some good news. Today he was more stable than he's been in days. Still some periodic drops in blood pressure, but none of the jaw-dropping variety today. This is a huge improvement!

Dr. Plunkett says things look good but "...we're not out of the woods yet". If that's true we've at least spotted the off-ramp out of the woods - reason enough to celebrate after a few very scary days and nights.

In a change of plans, they are keeping Rob sedated and on the ventilator for the next few days. The original plan was to "close his chest, remove the ventilator and wake him up" in quick succession because they had presumed he would already be weaned off of certain support meds; since he's still on those meds, he must stay sedated and on the breathing machine. The good news is he said "adios" to one of his blood pressure meds today.

He's still dealing with the double whammy of infection and organ rejection, but seems to have the upper hand based on how stable he was today. They are continuing with the kitchen sink approach.

He is getting excellent care in the ICU. The nurse to patient ratio is 1 to 1. While I stand idly by, the nurses are a blur of activity. Constantly changing out IV meds, responding to various machines with their various alarms, charting his progress, drawing blood, poking and prodding. The ICU itself is a fluorescently bright, noisy place. They tell me Rob could be here for 10 more days or longer.

Today is Day 14 for Rob's new heart. A cause for us to celebrate and to humbly thank our Donor once again.

=Haley Thomas=

Lisa Salberg

03-29-2006, 10:18 AM

I was out of town when Rob recieved his new heart and I was unable to post on the web at that time. I have kept Rob in my hopes and prayers as I know you all have.
I remain hopeful that his battle with infection and rejection end soon and he zooms toward recovery with the same energy he has shown us here on the board.

Best wishes to Rob and his family!!

Lisa

savagenation

03-29-2006, 07:10 PM

WOOOOOHOOOOOO!!!!!! GO ROB!!! I am so glad to hear that an exit off your freeway of madness is finally in sight. I pray that pretty soon this will be all over with and Rob will be back on the board good as new. Good luck buddy. My prayers are with you and your family.

CJensen

Debbie

03-30-2006, 01:51 AM

I have been watching Rob's progress with interest and unvoiced support. For the lack of having written my support, I apologize. But I do want to say that I hope he does well and that I will send my prayers and best wishes for him.

I have experience with transplants and problems afterward, due to my mother's heart transplant. I am so sorry for what you have all been through, and I understand the rollercoaster you are on right now. I understand how you kind of lose all sense of time and the world around you. Your whole being becomes centered on the patient and his ups and downs, and you live each one along with them.

If you ever need to talk, please let me know. I posted the events of my mom's transplant, so if you are interested, you can find them on the board.

I am sending you all my very best wishes.

Debbie

Cynaburst

03-30-2006, 02:04 AM

Hey everyone,

It looks like Rob may have finally turned the corner! Haley sounds cautiously optimistic. Here is the latest.....

Wednesday, March 29, 2006
Rob's Condition as of Wednesday Night, 29 March
Rob continued stable today, thank goodness. I'm keeping my fingers crossed that he'll get to his next milestone - waking up and losing the ventilator - in the next few days. It would be oh-so-sweet if he could actually watch the UCLA Final Four game on TV this weekend. Go Bruins.

Note to Dave Bixler: I'm fixing to promise him a power boat in addition to the motorcycle. You may never hear the end of this.

My continued thanks to you all for giving us your support and friendship.

= Haley Thomas =

JohnM2

03-30-2006, 02:43 PM

I'm so very pleased to read about signs of progress, at last.

I've been watching this thread, and been thinking about Rob regularly. This is very good news indeed.

I hope things continue to go well

Best wishes

John

Cynaburst

04-01-2006, 02:24 AM

Rob's Condition as of Friday Night, 31 March

No change from yesterday. Any day without a crisis is a good day.

It will be several more days before he's awake and off the ventilator.

= Haley Thomas =

Janet McClure

04-02-2006, 12:24 AM

Just wanted you guys to know James and I are thinking of you and praying for you. You have been on my mind alot. Just hang in there and take one day at a time. We are praying for no more complications and that Rob will be awake and doing great very soon. Janet

BlueDevil

04-03-2006, 08:38 AM

Rob's Condition as of Sunday Night, 02 April
Rob is basically the same as yesterday. Maybe a little progress but it's hard to tell.

We really never expected him to be in the ICU for 19+ days. The ideal path was the transplant surgery (complete with a closed chest), followed by a day or so in the ICU, then transfer to the 'step-down unit', and get discharged from the hospital at about Day 10.

We all know Rob's story didn't follow that path. The surgeons had a difficult time removing Rob's original heart, which caused the excessive bleeding that prevented them from closing his chest. In the ICU he received many units of blood products to help with clotting. That along with the dozen or so other IV meds increased his fluid levels which caused his blood pressure to drop which they are treating with dialysis and various meds. His bleeding was thankfully brought under control about the time they discovered an infection and early signs of organ rejection, which they immediately threw the kitchen sink at. That under control, they closed his chest on day 13.

Which leads us to recent days where the plan has been to wean him off his blood pressure meds, sedation and pain meds while continuing to remove fluid. If they're too aggressive Rob's blood pressure drops to the floor. It's a balancing act to reduce the meds without crashing the patient.

Despite all this - no regrets. He had no chance at all without the transplant. Once he gets past this difficult part, which I know he will, he'll have his life back. Thanks to his Donor for making it possible.

= Haley Thomas =

Lisa Salberg

04-03-2006, 10:25 AM

Rob has strenght which we have all wittnessed here on the board I will continue to pray that this strenght will carry him through. He remains in all of our hearts as we move though our daily activities. I hope he can feel our support... it is coming in from around the world.

Rob,
Be strong. Fight like heck and get back to us soon. We miss you around here.
Lots of love,
Lisa

Midge Rollins

04-03-2006, 05:57 PM

Rob, sounds like he is taking some steps forward even though right now they are baby ones. Haley, hang in there I hope you are doing okay. I am keeping both of you in my prayers.

tommysgirl

04-03-2006, 10:36 PM

Haley,
Hang in there and remeber to take time to care for yourself. Sounds like Rob is making baby steps toward recovery. 1 minute, 1 hour, 1 day at a time, that's what counts. I will continue to lift all of you up in prayer. Praying for continual progress and recovery. God Bless!

Love and Prayers!
Sherry and Tommy

Cynaburst

04-05-2006, 02:35 AM

Tuesday, April 04, 2006

Rob's Condition as of Tuesday Night, 04 April

Still in the fight. No significant change over the last couple of days.

= Haley Thomas =

eatwell

04-05-2006, 06:52 PM

We're all with you! Thanks for the updates.
Laura

savagenation

04-05-2006, 06:56 PM

Tuesday, April 04, 2006
Haley's Condition as of Tuesday Night, 04 April
Car trouble temporarily trumps a heart transplant.

I could not visit Rob today because the power steering on our family van, The Mothership, gave up the ghost. The unscheduled trip to the mechanic coupled with an early school dismissal gave me a 3 hour window – which probably wouldn’t even cover the 68-mile round trip on the rainy 405 freeway.

Who knows if he was disappointed, or frankly even fully aware, when his nurse told him I wasn’t coming, but *I* certainly was disappointed. Yesterday I had offered to bring books to read aloud and Rob had assented (I think) by squeezing his closed eyelids. I had a satchel ready with a few books including Bill Bryson’s hilarious A Walk in the Woods and Lance Armstrong’s It’s Not about the Bike, along with the LA Times. I was looking forward to being useful.

I was distressed, but it turned out to be a good thing. I had a chance to decompress a little. To reflect. To process this whole business.

What are my expectations? I want to see real progress every day. Fewer meds, better BP numbers. Well that’s just dumb. It doesn’t work that way so I should stop keeping score. This is completely unlike our other hospital experiences - short term affairs that twice concluded with the homecoming of a new baby. This is an open-ended situation. Just how long can a person stay in the ICU?

I haven’t mentioned our children much in this blog out of respect for their privacy, but I thought about how they are coping with the situation. They are both riding this wave rather steadily, and I’m thankful for the support we’re getting from the UCLA child development staff.

What’s going on inside Rob’s head? Will he remember anything? I’m anxiously awaiting the removal of the ventilator so he can talk, even though I’m trying not to keep score. But hurry.

How much is all this going to cost? We are fortunate to have excellent medical insurance, but we have to be ready to deal with the inevitable bureaucratic screw-ups and shenanigans. How in the world can families without insurance handle the financial stress?

It doesn’t seem right that the rest of the world continues merrily along in the midst of our medical drama. Teacher conferences, property tax payments, empty milk cartons – all needing attention.

Speaking of needing attention, our dog Marley is barking at me right now so I’ll wrap up this entry. Thank you for all your continued support.

= Haley Thomas =

Pam Alexson

04-05-2006, 07:29 PM

Haley,

Thanks for the update , I am sorry you are experiencing obstacles in your path and that you could not visit Rob today. When things seem more then enough it appears there is always something else that can disrupt the flow.

I continue as everyone here to keep Rob and you in my daily thoughts and prayers. Rob has always been a great person of information, support and friendship here on the message board and I miss him .

Positive thoughts ,

Pam

shirleymahoney

04-05-2006, 09:18 PM

I hope Rob has better and better days as days go by he sure is a tough one, Hang in there Haley and please get your rest also

Hugs and Prayers

Shirley

JohnM2

04-05-2006, 10:58 PM

Haley,

Hang in there, and be patient. This seems like one of those situations where it's best to measure progress on a weekly basis, or less often, rather than daily.

I'm thinking of you daily, and hope that the situation will soon start to improve for you.

Best wishes

John

tommysgirl

04-06-2006, 12:10 AM

Haley,

I believe that things happen for a reason. As disappointing as not being able to visit Rob was. It sounds like you would of really been pushing yourself to go and then get back to the kids. This mishap gave you a chance to rest and try to recoup. I continue to lift all of you up in prayer and ask for baby steps each day. I'm glad that the kids have a good outlet. Please take care of yourself.

God Bless!!
Sherry and Tommy

Laoshur

04-06-2006, 03:27 AM

Haley and Rob,

I continue to pray for all your family. Maybe two days away, Haley, will allow you to see the significant changes you long for!

Rhoda

Largehearted

04-06-2006, 08:20 AM

Haley.

I too pray regurlarly for you. Hopefully soon more substantial progress will be your experience.

Peace,

Leon

Cynaburst

04-08-2006, 01:14 PM

YIPPPPPEEEEEEEEEEEEEEEEEEE!!!!!!

"No More Ventilator!"

Yesterday Rob had his best day since his transplant on March 14th when the Docs removed his ventilator. He now has a clear mask over his nose and mouth, but no more obnoxious pipe down his throat (although there's still a skinny tube in there to his stomach). He was even able to croak out a few words last night - didn't sound much like his voice, but maybe I'm just having a hard time remembering after 24 days of silence.

I'll write more in my next entry. Wahoo!

= Haley Thomas

Lisa Salberg

04-08-2006, 01:17 PM

That is GREAT NEWS!!!!!!!!!

Rob we are ALL cheering for you and want you back on the board soon!! Hang in there!

Lots of love and good wishes,
Lisa

Midge Rollins

04-08-2006, 02:54 PM

What wonderful news. We will keep pulling for him.

Largehearted

04-08-2006, 03:31 PM

Haley and Rob.

This si very good news! I am so happy for you both.

Leon

Abbygirl2

04-08-2006, 03:50 PM

This is great news!! All the best to your entire family.

Pam

Stuart Schwartz

04-08-2006, 04:23 PM

What great news.

So happy for Rob, Haley and family.
Our thoughts and prayers continue.

Stuart & Barbara

Pam Alexson

04-08-2006, 04:49 PM

Haley...This is great .. Yippee , Rob is coming back. Thanks for the great news .. Keep hanging in there.

Pam

angall

04-08-2006, 08:19 PM

Haley

This is one of the best entries I've read in awhile. I am so glad Rob is moving, even if it is slowly, to a better day. I pray that his recovery continues. He is certainly in my prayers.

JohnM2

04-08-2006, 08:42 PM

That's just made my day! I'm so very pleased to read that Rob is starting to improve.

WONDERFUL!!:D :D

John

tommysgirl

04-08-2006, 10:06 PM

Haley,
We are so happy for you and Rob. Keep believing for improvements and we'll keep praying! Give Rob a hug from all of us.

God Bless!
Sherry

shirleymahoney

04-09-2006, 02:30 AM

Haley And Rob

That is such great news, you both are always in my prayers, can't wait to see him back on the board

Shirley

Stuart Schwartz

04-09-2006, 01:28 PM

FROM HALEY'S Blogg

Sunday, April 09, 2006
Rob's Condition as of Sunday Morning, 09 April
A great Friday followed by an even better Saturday.

Rob's breathing has continued just fine without any help from a ventilator. They've even downsized Friday's plastic oxygen mask to one of those thin clear tubes with the little nostril stubs. Practically invisible.

I can see his mustache again. In the ventilator days, it had been completely masked by a 3/4" strip of white tape stretching from ear-to-ear, creating the weird illusion (especially to the bleary-eyed) of a clean shaven upper lip. With his mustache restored to its full glory he is beginning to look like himself again. Well, except for that gastric tube which is now sticking out of his nose; you can't have everything.

More good news - he's showing no signs of organ rejection! This was confirmed by the results of a heart biopsy which was performed on Thursday. He will continue to get the battery of anti-rejection meds (indeed he will need them for the rest of his life) but the the dosages have been reduced accordingly.

Even more good news - he's off the 24/7 kidney dialysis! His kidneys stopped working properly on March 17th, a reasonable response to the mega-volume of meds and blood products that were needed to staunch his bleeding. Ever since, he's been hooked up to a bedside dialysis machine which gently removes excess fluid. The nurses were under orders to keep adjusting the machine to take off as much fluid as he could tolerate - remove too much fluid and his blood pressure drops; remove too little and not only does he start resembling the Michelin Man, but his heart can't handle the extra volume.

They are switching him to the more traditional, and more agressive, dialysis machine for 4-6 hours/day. This way they can assess how his kidneys are doing au natural. Most patients' kidneys bounce back to normal after a while. In any event, Rob and I were aware that some very low percentage of heart transplantees end up needing permanent kidney dialysis - but even then the trade-off would be worth it.

The dialysis nurse unhooked the 24/7 machine yesterday. I was startled when the rhythmic 'ker-chunk ker-chunk", that had so dominated the soundtrack in Rob's room since St Patrick's Day, abruptly ceased. As an added bonus, I moved my chair from the doorway to the left side of the bed where the dialysis machine and ventilator had been.

Even more good news - his infection is still at bay! The cooties that are still left are resistant to the set of antibiotics he's been given, so they are trying out some new obscure ones. Rob will likely be fighting this for months, but for now he has the upper hand.

Rob is sort of awake but still feeling the effects of being under heavy sedation for so long. The sedative acts as an amnesiac so he can't really remember what's happened from day to day. He's still confused but the fog is lifting more each day. Every day when I arrive at the ICU I tell him the date ("It's Saturday, April 8th, and it's Day 25 with your new heart") and explain about the transplant. Yesterday afternoon I asked him why he was in the hospital and he anwered in a rasping whisper "Heart... surgery.". Yes, our guy is on the way back.

He's still on far too much blood pressure support and he can't move his arms or hands, but I'm still elated about his progress. I'm looking forward to writing more good news in the coming days and weeks. I'll post some photos once I can get Rob's permission.

= Haley Thomas =

JohnM2

04-09-2006, 08:48 PM

Great News

I'm almost delirious with joy after reading the last post

John

karen cicconetti

04-10-2006, 02:12 PM

Great news!!!! Lets hope the road ahead is less rocky.

Karen

eatwell

04-10-2006, 05:56 PM

So excited and joyful for you!! Oh my, just wonderful!!
Keep going Rob!!

Laura

Largehearted

04-10-2006, 06:37 PM

This is great news!

We are so very happy for you.

Leon

amyshields

04-10-2006, 07:00 PM

Great news! It sounds like he is definately making excellent progress :)

Stuart Schwartz

04-11-2006, 07:24 AM

FROM HALEY

Monday, April 10, 2006
Rob's Condition as of Monday Night, 10 April
Rob is back on the ventilator and the 24/7 dialysis. He tried but his own lungs and kidneys just weren't ready to carry the load. He's very frustrated and exhausted. It's agonizing for a person to be on a ventilator without being fully sedated. Maybe he should have asked the Wizard of Oz for a heart like the Tin Man did - it would have been easier.

His new heart, however, continues to perform magnificently! I'm sure the Donor's family would be proud that their guy's heart is doing so well.

= Haley Thomas =

Largehearted

04-11-2006, 08:14 AM

Halet.

We will continue to stand with you guys until Rob is up and dancing. When he is able to hear it, do let him know that we pray for you guys and wish you all the best.

Leon

Laoshur

04-11-2006, 09:31 AM

Haley and Rob,

I cannot imagine what you are going through during this time, but will continue to pray and hope to get great news soon!

Rhoda

Midge Rollins

04-11-2006, 10:28 AM

Haley, I am sorry Rob has had a set back. The good news is that his heart is strong and that will sure help him through all of this. Am keeping you both in my prayers.

tommysgirl

04-12-2006, 09:13 PM

Haley,
I'm sorry that you and Rob are going through this roller coaster. We will continue to lift all of you up in prayer until all is well and your family is back in your own home. Take care and get some rest when you can.

Love and prayers!
Sherry & Tommy

Stuart Schwartz

04-13-2006, 09:26 AM

FROM HALEY

Wednesday, April 12, 2006
Rob's Condition as of Wednesday Night, 12 April
Yesterday Rob was spared further agony of the ventilator when had a tracheotomy. Now the ventilator attaches to the trache tube instead of through the mouth, which is much more effective and comfortable for our patient. As for the scar he’ll have on his throat, it will be just another little souvenir of the experience. Hey, it will pale in comparison to the long ‘zipper’ he now sports over his breastbone. I never thought I could be happy about a tracheotomy, but I was thrilled and very relieved for him to have it.

Finally, finally, finally his sedation meds have been reduced to almost nil. Rob is now really awake and aware, even if he can’t speak because of the ventilator. He is calm and not in distress. He has been able to get some much needed rest during the down time between the seemingly endless medical procedures.

The meds take some time to wear off completely. I don’t know how much of this experience he will remember - they tell me that patients rarely remember being in the ICU. For Rob’s sake I’m hoping they’re right. I’m even a bit envious that he won’t remember it while I won’t be able to forget it. Still I’m confident that in the coming years we’ll pile up a houseful of wonderful post-transplant memories and that my own memories of this frightening time will soften and fade.

Rob is contending with problems that result from being immobile for so long, today being Day 29 in the ICU. In a couple of days he’ll start physical therapy. He still can’t move his arms or hands, except for a tiny bit at the wrists (which is an improvement). He has a lot of work ahead of him – work which I’m sure he’ll be happy to do.

The doctors are still concerned about Rob’s continuing need for blood pressure support and dialysis. It could be because of the underlying infection he’s still fighting. We’ll see what they come up with to deal with it.

Today I was waiting in a broken-down chair in the hallway outside the ICU while they did a procedure on Rob. While I waited I saw a patient, a slender white-haired gentleman, slowly shuffling towards me down the hall with his nurse. Despite the shortie hospital gown, bright blue socks and rolling IV rack, he looked rather dignified. As he neared, his nurse called him by name and I suddenly realized that he was the man who was in the bed directly across from Rob’s during our first two weeks in the ICU. Like Rob he had been in critical condition and he had looked to me like a pale skeleton in an enormous bed. Yet here he was, vertical. I chatted with him a while and he told me he had a lung transplant. He wanted to walk as much as possible to get ready for his daughter’s wedding next month. He thanked his Donor and turned to start another lap down the hall.

I haven’t felt this encouraged in, oh, 29 days.

= Haley Thomas =

Glen Beamish

04-13-2006, 10:10 AM

That was very inspiring, lets hope the corner has been turned.

Midge Rollins

04-13-2006, 11:45 AM

Haley, lets hope that soon Rob will be up pushing his IV pole down the hall. You get some rest.

JohnM2

04-13-2006, 03:49 PM

Haley,

I'm very pleased to read the news of some improvements. I'm sure you are right about those memories you will be accumulating - and that you will be able to share them together for many years.

The very best of wishes for both of you from myself and my wife.

John

Janet McClure

04-13-2006, 11:20 PM

I am so sorry for all the complications and problems you guys are having. Know that we all are thinking of you both. I know you must be so tired and worn out. Hang in there! Janet

tommysgirl

04-13-2006, 11:51 PM

Haley,
That's great news! I'm very happy to hear that Rob is improving. Before ya know it, you'll be home making those wonderful memories. Take care of yourself and get some well deserved rest when you can.

God Bless!
Sherry & Tommy

karen cicconetti

04-14-2006, 12:17 AM

I truly hope all goes well from now on. Happy Easter!! The good Lord truly works some amaing miricles,

Karen

Laoshur

04-14-2006, 12:56 AM

Haley,

I, too, rejoice with you in the improvements and like everyone here, long to hear of more and more. I will pray especially that Rob and you will very quickly begin to make joy-filled memories together.

Rhoda

dreamcatchinglady

04-14-2006, 07:07 PM

Haley,
Thank you for keeping us updated on How Rob is doing. Tell him all of us at The HCMA board are cheering him on. Both of you are in my prayers. God bless you both and the donor and the donor's family.

Linda

04-14-2006, 09:10 PM

Our prayers and well wishes continue for Rob, Haley, and the entire family - Linda

Debbie

04-16-2006, 02:44 AM

Haley,

I continue to check for news of Rob every day. I want to send you both my best wishes and I hope that Rob continues to improve. Please take care of yourself, too, you've also been through so much.

Debbie

Reenie

04-16-2006, 11:07 AM

Hi Rob. It's Easter today. Time to rise and shine. :) All my best.

Reenie

tommysgirl

04-16-2006, 11:16 AM

Haley and Rob,

Happy Easter!! Hope all is well today and ya'll can enjoy the day together.
Keeping all of you in our prayers and remembering Rob's donor today also.

Love and prayers!
Sherry

Cynaburst

04-16-2006, 05:42 PM

Latest update from Haley's blog:

Rob's Condition as of Sunday Morning, 16 April
I wish I were a better lip reader.

Rob conscious although still in a chemical fog. He is unable to speak due to the tracheostomy.

His main form of communication is by mouthing words. Woefully inadequate. It's frustrating to us both and simply exhausting for him. Typically trache patients can communicate by written note, by pointing to letters on an alphabet board, or by playing Charades. Unfortunately these aren't options for Rob because he can't move his hands or arms. Arrrrgh!

Even so, I'm glad he has the trache. It is helping his lungs recover more quickly than they could have otherwise. Once his lungs are clear they can cap the tube so Rob can speak. Hopefully that will be in a few days.

His kidneys are bouncing back. Lately he has needed kidney dialysis only occasionally instead of 24/7. That's really good news.

His heart is also performing very well. He's still connected to an external pacemaker, but it's been turned off during my last couple of visits. It's quite beautiful to see his own heart's regular rhythm shown on the overhead monitor. The attending cardiologist says that Rob's heart output is better than mine.

So why is he still in the ICU? He's still very sick and needs the 1-to-1 care of UCLA's excellent nursing staff. He needs IV meds to maintain a good (i.e. high enough) blood pressure, and these meds need constant monitoring. He is also on constant antibiotic and anti-rejection drips (which he will take in pill form once his gut starts working again). He is still fighting the staph infection and therefore needs the isolation of the ICU. The doctors' consensus is that the infection is the reason he can't maintain a good BP.

He'll be ready to move to a "step down" hospital room after these issues are resolved. I honestly have no idea how long this will take.

One last thing - Rob's mustache is gone. He consented to shave it off during a recent overnight shift because they just couldn't remove the weeks' worth of tape adhesive from it. He looks great - like a new man. I've been married to him for almost 18 years and I've never seen his upper lip before now!

= Haley Thomas =

jmurray

04-16-2006, 07:05 PM

Keep hangin in there Rob (and Haley) Sounds like things are progressing slowly but surely for the better.

Can hardly wait to see a new picture of Rob without the 'stache

Continued best wishes,

John

JohnM2

04-16-2006, 10:39 PM

Hi there Rob & Haley,

I'm very pleased to read the news of progress. That's always a pleasure.

I understand Haley's comments about never seeing Rob's upper lip before. I've been married for almost 39 years (aniversary in June), and my wife has never seen me without a beard, and only once without a moustache. She was only 15 when we first met!

Best wishes from us both

John & Margaret

Aimee

04-17-2006, 01:29 AM

Best to you and Rob. On this day of resurection. Rob hang in there and I've been down the path your are walking. Infection and all ...no I missed the trach by a few minutes and decided to take a breath, cough and hang on. It all gets better one day and you can't really remember the pain or the struggles, just the joy of your new life. Each day is a great day, my motto is always and only forward ! Ag

Pam Alexson

04-17-2006, 11:05 AM

Best thoughts to you Haley and Rob. May the bumps in the road of Rob's recovery continue to be less and less. Looking forward to one day getting him back here and seeing Rob minus the stach.

Pam

Cynaburst

04-17-2006, 05:37 PM

If you guys want to see Rob's EKG strip, there is a picture of it on their blog. I copied the text below.

April 16, 2006

Proof
Here's a strip showing Rob's new heart in action - with no help from a pacemaker. The doctors are especially pleased with the look of the P Wave, which is the tiny bump preceeding each big beat. I'm sure this sight would give our Donor's family and friends lumps in their throats.

The most beautiful squiggly lines I've ever seen!

= Haley Thomas =

Reenie

04-17-2006, 10:24 PM

That's the best squiggly lines I've ever seen too! :D

Reenie

tommysgirl

04-17-2006, 11:06 PM

Haley,

That's great news! It's wonderful squiggly lines and a beautiful sound to hear on the moniters. A new heart, new begining, and new memories to come.
What a miracle! You and Rob take care.

God Bless!
Sherry

JohnM2

04-18-2006, 09:07 PM

Wonderful! I'm really thrilled to read that great news

Stuart Schwartz

04-19-2006, 07:36 AM

FROM HALEY

Rob's Condition as of Tuesday Night, 18 April

I found Rob propped up in bed at a slightly inclined position, his eyes open but kind of sleepy looking. I dropped my purse on the visitor chair, squirted some sanitizer on my hands from a dispenser at his doorway, and stepped to the foot of his bed. I gave an exaggerated wave to get his attention and said “Hi Rob”. He tilted his head slightly toward me, gave me a weak smile and mouthed “Hi” back.

It does surprise me that I am always so glad to see him. Even when he’s in difficult circumstances like this. For that matter, even when he is unconscious. Clearly these visits help me as much as him. I came around to his right side as close to his head as I could, and gave him an awkward hug and a kiss while reaching over the high bed rail and trying not to disturb the web of IV tubes and wires.

His nurse gave me the scoop on our patient. …had a restless night, still trying to wean the BP drips, on the ventilator during the night but breathing on his own through the trache tube during the day, dialysis is scheduled for today, no results of the latest heart biopsy but no news is good news… There is always so much going on – monitors beeping, machines of one sort or another at the bedside – it can take me a while to grasp what’s happening. Yesterday, after having been there over an hour, I suddenly noticed that Rob’s final chest tube had been removed. Duh.

He’s awake but not 100% Rob yet. He’s aware enough now that yesterday I brought in a very fat manila envelope stuffed with your cards, letters, emails, and even a copy of this blog. I read them out loud, interrupted by the nurse doing various procedures and visits from doctors, and he was considerably cheered by your well wishes.

Today he had his second visit from a Physical Therapist. This is an important milestone toward regaining the use of his significantly atrophied muscles, and at some point, being able to stand and walk right out of the hospital. The PT put him through several exercises which I had been briefed on yesterday, with instructions to do them often. I am very impressed by Rob’s motivation. Even with the so-called passive exercises, Rob was working hard to do the lifting and moving himself. This is a very, very good development.

We’re still frustrated that he can’t speak and that I’m not a better lip reader. We have the most success if he mouths each letter – tedious, but most efficient. Today he spelled out that he wanted “Iso-balls” to squeeze to strengthen his hands (I would never, never have gotten that one without him spelling it), and that I should check the Apple store for a way for him to use a computer via eye movements so he can communicate. On the latter, the hospital couldn’t help us so I checked online this evening and found several interesting, if frightfully expensive, options. I suspect, however, that he’ll find his voice by the time it takes to order our selection and get it installed and working. I’m guessing it will take much longer for him to get his fine motor skills in shape to use a keyboard or mouse.

Bottom line – huge improvements over even a week ago. His heart is still working like a champ. We’re still fighting the same demons with some success via the tracheostomy and the gradual weaning of some meds.

Thank you all for your continued support to our entire family. You are an important part of his recovery.

= Haley Thomas =

shirleymahoney

04-19-2006, 03:26 PM

Hang in there Rob and Haley, It looks like things are starting to get better, you are both in our thoughts and Prayers along with your donor family

Shirley

Abbygirl2

04-19-2006, 03:33 PM

Haley and Rob,
So glad to hear of Rob's continuing success in his recovery. I wish you all the very best. Take care.

Pam

eatwell

04-19-2006, 04:55 PM

Haley, I do hope, one day, you write a book. Not necessarily on 'being a wife of a heart transplant recipient', but on a topic of your choice. You write so well, with humor, enlightenment, great detail, and with full emotion.

do consider it, you may have a gift.

do keep this blog, it will be a record of the 'event'.

bless you and so good to hear the progressive, steady flow of gains for Rob.

Laura

JohnM2

04-20-2006, 09:31 PM

I'ld like to add my note of pleasure at Rob's progress. It' great to read such good new.

Best wishes to you both

John

tommysgirl

04-20-2006, 09:42 PM

Haley,

This such great news! It made my night after a rough day at the clinic. It's so nice to hear that Rob is progressing well.

Take care and God Bless!

Sherry

Debbie

04-22-2006, 01:45 AM

Dear Haley and Rob,

I am so happy to hear of every step forward that Rob makes. I hope, Rob, that you just keep getting better and better, and Haley, that you can keep your chin up and be strong for your family, yourself and Rob.

Please remember how many of us are out here pulling for you.

Debbie

Toogoofy317

04-22-2006, 04:17 AM

you guys are my hero's. keep fighting Rob!

Mary S.

Stuart Schwartz

04-23-2006, 08:15 AM

FROM HALEY
4/22/06

Rob is continuing to work with a Physical Therapist (PT) to strengthen his muscles and an Occupational Therapist (OT) to relearn how to sit up, grasp objects, get out of bed, and do the dozens of everyday activities we take for granted.

He's starting at Square Zero here; his muscles have atrophied stunningly during his 39 days in the ICU. His legs are like pencils and his hands and arms are almost useless. To give you an idea, his PT is not helping him make a fist, but is getting his fingers ready to make a fist; actually making the fist is a goal for the future. Despite all this, Rob rivals any elite athlete for pure guts and motivation. I'm deeply impressed with his determination keep trying again, again, again. It hurts, it's frustrating and it's demoralizing, yet he keeps trying.

For the moment, at least, I'm not taking for granted being able to rise from a chair to answer the door, or to lift my head from my pillow, or even to clear my throat. Driving a car is a symphony of subtle movements. Unloading the dishwasher is an absolute wonder of physical coordination.

Rob has passed a significant milestone this week. He is now well enough for the doctors to focus on something other than just saving his life. They're getting Rob back to living his life as an able-bodied person. Thanks once again to our Donor for making all of this possible.

= Haley Thomas =

Midge Rollins

04-23-2006, 09:56 PM

Haley, Thank God for this good news. I am so glad he is now able to start PT. With his strength I am sure he will do very well in rehab. We will keep him in our prayers. Thank God for our donors. This is organ donation month. What a blessing they are

Laoshur

04-23-2006, 11:10 PM

Great news! This post is both encouraging as far as Rob is concerned, and inspiring to me to not forget all the marvelous things I can do.

Rhoda

Janet McClure

04-24-2006, 01:59 AM

I know it is very tough where you are. My daughter Emily had to learn so much all over again as well when she sustained a severe brain injury in a car accident 17 months ago. It is a huge struggle for the patient and the family. Just continue taking one day at a time. Rob seems quite amazing and so do you! Thanks for sharing your story so well with us! Janet

BlueDevil

04-26-2006, 09:02 AM

Rob's Condition as of Tuesday Night, 25 April
Today is the 6-week Anniversary of the transplant. Day 42 in paradise.

For about about a week Rob has been complaining of a progressive hearing loss in both ears which was confirmed by an audiologist today. He has “moderate to severe” impairment to his middle ear, probably due to a build up of fluid behind the eardrum plus the combined toxic affects of the dozens of meds he’s been taking. It will probably go away after those causes are treated.
Meanwhile he’s having trouble hearing his iPod. You can see it there in the photo in the upper left, docked on its little speakers. I brought it in several weeks ago and it has certainly contributed to Rob’s well being. I was initially worried about playing it too loudly – and believe me it has to be loud to be heard over the ambient noise in his room. I felt better when his nurse told me “Hey, don’t worry about it. All the neighbors are unconscious.” Kinda struck me funny. Anyway, Rob can’t hear the music clearly anymore. However I’m keeping it on because I can hear it. After all, if Momma’s not happy, no one’s happy.

A recent culture confirmed that his infection is flaring up again. It’s called pseudomonas, and it can cause severe pneumonia in hospitalized people, especially those in intensive care. He continues to be treated with several weirdo antibiotics, some of which may be contributing to his hearing loss.

As an extra precaution he is now in isolation. Anyone entering his room must wear a gown and gloves. Frankly it’s a real pain. Today I was the Resident Scold and made sure everyone complied. But I’m sure that right this minute, as I sit here at home in front of the computer, there are gownless and gloveless people parading in and out of his room. Sigh.

I’m getting better at lip reading. I can understand his Greatest Hits easily now. “…need suction...” “…too hot…” “…too cold….” “…hurts…” “I love you.”

For everything else we’ve worked out a little system. He mouths a sentence and I repeat aloud what I thought he said (usually I’m wrong). Then he will spell out the words I didn’t get. It may take 5 minutes or more for him to communicate a complete thought, especially if said thought came from left field. …Patience...

Today Rob mouthed a really long passage that I didn’t get at all after a couple of tries. In exasperation I said “Oil Can?” He smiled at my lame reference to the Tin Man. I never did figure out what he was telling me.

The hard work of PT and OT continue. He is getting stronger every day. The added bonus is he gets tired during the day so he can conk out at night. At least his hearing loss makes it easier to sleep though the cacophony that is the ICU.

I continue to read your cards, letters, blog comments and emails and I’m sharing them with Rob. It feels as if you’re standing right beside us in the ICU – wearing gowns and gloves of course. Thank you all.

= Haley Thomas =

Laoshur

04-26-2006, 11:55 AM

Hey, guys,

I think we need to really get a BIG joint prayer going here. Pseudomonas pneumonia is the stuff I had last semester. In fact, I still have it. With the lung damage it has left me, the docs expect that all I can do is fight it back for the rest of my life unless a miracle happens. I am on antibiotics again this week after a nasty flare-up last week. To try to fight this again and again with a heart transplant and all the immune suppressant drugs sounds impossible. I can vouch for the fact that this is REALLY BAD!!!!! Pseudomonas is associated with very high death rates even under the exceedingly rare situation of a previously healthy person catching it. I would not write all this, if I thought Haley was reading this, but I gather that she is only reading the board where she is reporting Rob's progress.

Maybe we can set a time when everyone who feels inclined to join us can all pray at the same time. Anyone want to suggest a time?

Rhoda

Pam Alexson

04-26-2006, 01:19 PM

I think a joint prayer would be wonderful support for Rob and Haley . In the meantime.. sending lots of prayers and support and positive thoughts.

Rob is very strong.

Pam

Cynaburst

04-26-2006, 01:45 PM

Rhoda - Maybe you should suggest the time since we don't know how U.S. times correlate with China....Please translate for us into U.S. time zones :)

tommysgirl

04-26-2006, 05:30 PM

Rhoda,

I agree a joint prayer would be great let us know the time. Rob and Haley need all the help and support they can get and we all know that " all things are possible through our Lord"

God Bless all!
Sherry

Ken Brennan

04-26-2006, 07:10 PM

Hope this adds to Rob's inspiration:

A certain measure of innocence
Willing to appear naive
A certain degree of imagination
A measure of make-believe

A certain degree of surrender
To the forces of light and heat
A shot of satisfaction
In a willingness to risk defeat

Celebrate the moment
As it turns into one more
Another chance at victory
Another chance to score

The measure of the moment
In a difference of degree
Just one little victory
A spirit breaking free
One little victory
The greatest act can be
One little victory

A certain measure of righteousness
A certain amount of force
A certain degree of determination
Daring on a different course

A certain amount of resistance
To the forces of the light and love
A certain measure of tolerance
A willingness to rise above

One little victory
One little victory
One little victory
One little victory

Celebrate the moment
As it turns into one more
Another chance at victory
Another chance to score

The measure of the moment
In a difference of degree
Just one little victory
A spirit breaking free
One little victory
The greatest act can be
One little victory
The greatest act can be
One little victory
The greatest act can be
One little victory

Laoshur

04-26-2006, 09:17 PM

I suggest that we all pray tomorrow (Thursday) night at 10 pm on the East Coast for Rob's full recovery. That time will allow time for people to read this and is at a time that most, including I, can do it - 10 am Friday here. So that will be 9 pm Central, 8 pm Mountain, and 7 pm Pacific times. Of course I know everyone is praying on their own times and in their own ways, but I think that all of us uniting in this way is important.

Rhoda

Reenie

04-26-2006, 10:27 PM

I'm in. Thanks for the suggestion, Rhoda.

Reenie

Midge Rollins

04-26-2006, 10:30 PM

Sounds great Rhoda. I for one know the power of prayer.

shirleymahoney

04-26-2006, 10:31 PM

you can count me in too

Shirley

eatwell

04-27-2006, 05:23 PM

Will join in, great idea.
Laura

Joyce Leinart

04-29-2006, 12:40 PM

Praying for Rob's healing.

Cynaburst

04-30-2006, 10:20 PM

Sunday, April 30, 2006

He Speaks!

On Wednesday night, after having visited Rob for several hours earlier in the day, I called his night shift nurse to get the latest scoop. He said that they had replaced Rob’s trache tube with a smaller size, i.e. a narrower diameter. They could do this because Rob had been taking strong breaths and could tolerate the smaller size. The narrower diameter tube allowed Rob to push more air up past his vocal chords. That was the boffo big bonus – Rob could speak again.
That was certainly welcome news. I hadn’t heard his voice since he was briefly off of the ventilator almost three weeks earlier. I was looking forward to having a real two-way conversation.

When I arrived at the hospital on Thursday morning, however, Rob didn’t want to talk. He was oddly listless and lethargic. He made no eye contact; he just stared at some point in the middle distance. He was idly popping his jaw to left and right like a boxer testing out his jaw after a sock to the face. He made just the merest acknowledgement of my presence, flicking his gaze to me for a moment and then right back to that point in the middle distance.

I turned to his nurse and said “What the?”. This nurse had never taken care of Rob before, and he couldn’t appreciate that Rob’s behavior was quite unusual. As I started to explain, Dr. Kelly appeared at the doorway. “Hey Dr. Kelly, what’s going on with Rob? He’s totally lethargic.”.

Dr. Kelly is the attending ICU doctor and has been caring for Rob since he arrived 47 days ago. I can recall only one day during that stretch that Dr. Kelly was not in the ICU (“Well,” he explained, “I work pretty much all the time.”). Dr. Kelly has been present at or has performed many of Rob’s procedures, the latest of which were the tracheotomy and the insertion of a new arterial line. Dr. Kelly knows Rob.

Dr. Kelly moved to Rob’s bedside, “Mr Thomas, how are you feeling today?” No response. Just more staring and rhythmic jaw popping.

Dr. Kelly stepped back outside the door and pulled up Rob’s computerized chart. He noted that Rob’s BUN and creatinine levels were quite high, which indicate that his kidneys are not working properly. “He’s already been scheduled for dialysis today. Let’s see how he feels after that. Elevated levels can make you feel cruddy.”

Rob was scheduled for bedside dialysis “as needed” which has turned out to be about every other day. The doctors are still waiting for his kidneys to kick in on their own. They explained that kidneys are resilient and Rob’s will likely bounce back. Rob’s blood pressure has been pretty good, on very little BP meds now, which will help.

About two hours later a cheerful dialysis nurse named Romero wheeled in the now-familiar dialysis machine. It’s about the size of a four-drawer filing cabinet with a network of sterile plastic tubing that snaps onto slots in the front of the machine which connect to a cylindrical filter about the size of a can of tennis balls. He consulted Rob’s chart and talked with the nurse. He had orders from the doctor to remove as much fluid as Rob can tolerate. Romero decided to remove 5 to 6 liters of fluid during the 4 hour session, a pretty aggressive program. He made that judgment based upon Rob’s ‘Ins-and-Outs’; how much fluid Rob had taken on via the IV drips, and likewise how much he off-loaded in urine. The nurses measure this stuff every hour and dutifully log it into Rob’s computerized chart, which is essentially a gigantic Excel spreadsheet.

The 4 hours would be enough to run Rob’s entire blood volume through the machine. Romero would be monitoring Rob’s vitals during the entire session, with special emphasis on blood pressure. If his BP dropped, he would dial back the dialysis.

He hooked Rob to the machine via a special IV line that Rob already had and the machine whirred to life. After about an hour I had to leave to pick up the kids at school. Rob still hadn’t uttered a peep.

I called the nurse later; he said that 5.5 liters were removed. A liter of fluid is about 2.2 pounds, which means a full 11 pounds of fluid was removed. He reported that Rob felt much better and was more alert and talkative.

The next day was the payoff.

Rob’s voice was back. He was wide awake and smiled when he saw me. “Hi…Haley…” he said loudly enough for me to hear from the foot of his bed. His speaking cadence is altered; he pushes words out in short bursts that correspond with his exhaling. His speech is more slow and deliberate, but it’s strong enough that he doesn’t have to be economical with words.

And he had a lot to say. He asked me about his current condition, interrupting me to get clarification. He asked for a blow-by-blow of what happened since his transplant, indicating that he did not remember me telling him much of this information before. He asked about his Donor. He asked how things are going at home.

He was also giving some valuable feedback throughout the day. When the brawny ‘lift team’ came to shift his position bed, he announced “Something’s poking me…on my right side” instead of having to endure being stabbed by an IV valve. “My left foot is numb” brought about a repositioning of his legs. “I can’t hear you….please repeat that” gave him the dignity of understanding what the heck was being discussed in his presence.

I asked Rob if there was anything he wanted to say to his friends via the blog. He says “Thank you…everybody”. I’ll second that sentiment.

= Haley Thomas =

posted by Haley

Midge Rollins

04-30-2006, 10:35 PM

Haley, Thank God!!! I hope all news from here on in is positive.

Reenie

04-30-2006, 11:39 PM

God does work miracles.

Reenie

Laoshur

05-01-2006, 12:29 AM

GREAT NEWS!!!! And yes, I am shouting!!!

Rhoda

Linda

05-01-2006, 09:29 AM

I'll keep praying for Rob, Haley, and family - Such a long and intense journey! Linda

Pam Alexson

05-01-2006, 12:16 PM

So glad for the positive update .. Now heal those kidneys! Looking forward to Robs continued gain in strength and his full recovery.

Pam

eatwell

05-01-2006, 05:14 PM

AWESOME........ I'm wore out reading this, how can you possibly be managing this?

Bless you,
Laura

shirleymahoney

05-01-2006, 09:41 PM

haley

I'm so happy he can now speak and i just bet you are too and Rob also you are both soooo strong, I will keep you and Rob in my prayers

Shirley

Janet McClure

05-03-2006, 01:06 AM

I am so glad Rob was able to talk to you. You guys have been through so much. I just admire your strength so much Haley. You are absolutely amazing and doing such an awesome job handling an extremely difficult time. Hang in there and know that we are all thinking of you. Janet

Debbie

05-03-2006, 01:24 AM

Praise the Lord!

Debbie

JohnM2

05-03-2006, 08:58 AM

I will add my joy to the others. I'm delighted to read of Rob's progress, and I'm really hoping it will continue. It was good to read about after not having visited the site for a while.

Cheers

John

Donna

05-03-2006, 03:17 PM

I am so happy for you and your family. You are still in our thoughts and prayers.

tommysgirl

05-03-2006, 07:41 PM

Haley,

Praise God! This is wonderful news. I know it makes you and Rob feel better to hear each others voices. ya'll are continually in our thoughts and prayers!

God Bless!
Sherry

Lisa Salberg

05-03-2006, 10:00 PM

I have been thinking - when Rob gets home it is going to take him 2 full days to get through the 15 plus pages this thread has become. Rob - you set a record for the longest thread in HCMA history!
Cant wait to have you back with us!

Lots of love and good wishes!
Lisa

Cynaburst

05-05-2006, 06:36 PM

Rob's Condition as of Friday Morning, 05 May
Day 52.

Up until today I had compared Rob's transplant and recovery with being on a roller coaster, with all the ups and downs and surprises it has brought.

But I've realized that analogy doesn't really do justice to this crazy experience. On a roller coaster, you and your sweetie climb in the car and pull the safety bar down across your laps, knowing that you're in for ride that feels scary but is really quite safe. During the ride you can sometimes see the track ahead of you. You can see it dip sharply ahead and you can anticipate that next big climb up ahead. You know about when the ride will end, at which point you can walk away or decide to ride it again.

This experience is more like riding the elevator of a skyscraper with the goal of reaching the top floor Observation Deck with the fabulous views. Other people have told you stories of their elevator rides to the top, and you think "I want to go there too". You press the UP button and wait for the door to open. And wait. Impatiently you press UP several more times. Just when you think it will never come, the elevator door startles you by sweeping open.

You step into the windowless elevator car and see there's only one button to push - "Observation Deck". Simple enough. You press the button, the doors slam closed and the elevator violently lurches up, throwing you down on the floor. As the elevator speeds skyward, you regain your composure and get back on your feet.

You notice that the electronic display, which should be ticking off the increasing floor numbers, is like none you've ever seen. It flashes words and phrases, and then goes dark intermittantly. "Complications", "Doing much better", "Ventilator", "Infection", "We're trying to figure out why..", "Fever", "Dialysis", "Neurology consult". "No rejection". "BP 90/50". "Suction".

You can feel the car slowing down and then stop. Suddenly it drops what feels like a dozen floors and slams to a halt, just hanging there for a long time. Finally it creeps upward a little and then stops again. When it starts moving again it feels like you're going...sideways? Now you're going up again. Or are you?

All the while you look to the electronic display to see how close you're getting to the Observation Deck. It keeps flashing its messages but it fails to answer the very simple questions you have - "What floor are we on and how long until we reach the top?". You don't know how close you are but you just hold on.

Today the elevator feels like it's maybe inching up after having dropped a few floors a few days ago. Earlier this week Rob started coughing up a lot of blood out of his trache tube. To my eye it looked like it was mostly blood. And there was rather a fountain of it.

The Respiratory Therapists (RTs) were constantly at his bedside working to keep his airway clear. They put him back on the ventilator to give him some pressure support (which makes sense because pressure helps staunch bleeding), and gave him cold oxygen. Doctor Kelly did a brachioscopy (looked down into Rob's lungs with a scope) and determined that the bleeding was coming from deep within the lower lobes. This indicated infection instead of, say, irritation to the airway due to frequent suctioning.

The RTs controlled the bleeding while the infection disease doctors determined that Rob has Aspergillus. That's a common fungus found outdoors in leaves and compost and, evidently, your local ICU. It doesn't affect healthy people, but is a threat to the immunosurpressed. I did some research on the web when I got home (big mistake) and was immediately scared out of my wits by the dire reports, especially with regard to Invasive Aspergillus. I called the ICU and spoke to his night nurse, "Is Rob's Aspergillus the invasive kind?". "Yes, I believe so". Freak out. More discussions that night and the next day with the doctor helped me understand that Rob was responding to treatment (more antibiotics) and that the info from the web was simplistic and out-of-date. Whew.

He's not coughing up any more blood, but the infection postponed a few things. The neurologists had planned to remove Rob's old defibrillator/pacemaker so that they could do an MRI to help figure out why he's still so weak (you can't have an MRI if you have a pacemaker because both involve magnets). The dialysis people wanted to put in a PermaCath port to make future treatments easier (I'll try not to ponder that one). Both procedures have to wait until the infection clears.

He had another heart biopsy yesterday, no results yet, and is continuing his every-other-day dialysis.

Meanwhile, although Rob can't speak like he did on Sunday, communication is going a bit smoother. He's continuing his PT and OT, with slow but steady progress, and is still motivated to get out of bed.

Going up?

= Haley Thomas =

Largehearted

05-06-2006, 08:14 AM

Haley and Rob.

That elevator ride analogy is a good one to describe your experience. I simply cannot imagine how frightening that must be. We will keep praying until you are looking out on a beautiful vista.

Peace,

Leon

Cynaburst

05-08-2006, 06:49 PM

Sunday, May 07, 2006
Not Alone
Good grief, that last entry was rather dismal wasn’t it?

Do I really feel like we’re stuck in a crazy elevator? Well…yeah. When it comes to making sense of Rob’s condition, and how close he is to the goals of Not Dead and Even Better Than He Used To Be, I really do feel like that.

But here’s the deal. We’re not in the elevator alone; we’re getting an abundance of support from you all. OK, well the elevator metaphor doesn’t really work (how could we all fit in there together?), but there you have it.

I know if you’re reading this blog you feel some investment in Rob, me, Connor and Shea. I know that some of you are close family members, some of whom have been separated by time, distance or misunderstanding. Some of you are our friends from the olden days, from work, from school, from HCMA, from the neighborhood. Many of you I know very well, and many I haven’t had the pleasure of meeting yet.

Here’s how you’re helping. You are telling us that you care. Letters. Cards. Emails. Blog comments. Phone calls. Visits. Prayers.

Without complaint you are picking up the pieces at work where I messily dropped everything.

You have given us touchingly useful things. Marie Callendar’s gift cards. Movie passes. Gasoline cards for the Mothership. Macaroni and Cheese.

You have helped with the children; picked them up from school, sat with them, fed them, listened to them.

You have sent poignant music and books.

Many of you at Northrop Grumman, they won’t tell me who, have even transferred your hard-earned vacation hours to me so we can avoid financial hardship. You are trading time with your families so that I can have time with mine. Wow. So grateful.

Even when you don’t feel comfortable making contact, I know that you are sending good positive thoughts of caring. All of you together are quietly urging us on. There’s a big psychic bank out there and you’re all making deposits that we can draw on.

Rob, Connor, Shea and I are not alone. Thank you.

Finally, as always, thank you to our Donor and his family and friends. We're sending good karma in your direction.

= Haley Thomas =

Cynaburst

05-09-2006, 08:41 PM

Rob's Condition as of Monday Night, 08 May
Day 55, and our 18th Wedding Anniversary.

Rob is still in the ICU but he is doing much, much better.

He is completely awake, experiencing only occasional confusion due to the residual sedatives still in his body. He listens with interest when I describe what he looked like when he was completely sedated (what others refer to as an 'induced coma') and how he acted when he was coming off full sedation. There's a TV in his room (with captions) so he can watch the news and get caught up on what's happening in the world. I'm arranging to get him an absentee ballot so he can vote in the June primary election.

He can speak when he needs to. He says it tires him out but at least he can get his point across. His hearing is still impaired.

His lungs remain a problem, but they're getting better. He is still breathing through his trache which has a little oxygen collar attached. He seems to have tackled the dreaded Aspergillus infection, and has thankfully stopped coughing up blood. His lungs aren't clear though. He is strong enough to cough on his own (the nurses have commented on how well he protects his airway). Nevertheless he requires frequent suctioning - an obnoxious procedure that involves sticking a slender sterile tube into his trache and down into his lungs until he gags and coughs.

He still needs dialysis because his kidneys have shut down. Hopefully his stable blood pressure will get them going. No telling at this point whether this is permanent.

He has been getting insulin via an IV for weeks; they're talking about switching to the injectable kind, which spells progress. Oftentimes a patient won't need insulin injections anymore after they get back to normal activity.

He is tenaciously working through his OT and PT with good, if slow, progress. He can't make that fist yet, but he can lift both his forearms up off the bed and he can shift his legs around.

His attitude remains positive. He is a surprisingly good patient. I had really expected him to be grumpier, he has every right to be, but he isn't. He is assertive and speaks up when he needs something, but he's not a complainer. He is always thanking the nurses and technicians who help him. He endures the poking and prodding with with courage and dignity.

The best news of all is that his heart is absolutely spectacular. The latest biopsy shows that, once again, his body is not rejecting the new heart. Thank you Donor.

= Haley Thomas =

Reenie

05-09-2006, 10:25 PM

Cynthia, thank you for the continual updates. He's still in my prayers.

Reenie

JohnM2

05-10-2006, 09:31 PM

I'm so glad to read of progress. It's been a long road you've been on, but there does seem to be some glimmer of light at the end of the tunnel - or is that the elevator appears to be moving up a bit faster?

I was very touched to read about workmates giving up vacation time to allow Haley to have more time with Rob and family. That's a very gracious and generous gesture.

My best wishes to you all

John

Eileen2345

05-11-2006, 03:17 AM

Haley,

I am praying for Rob, and for you and your loved ones.

Many, many hugs,

Eve

karen cicconetti

05-12-2006, 01:39 AM

Great News Let's Pray For Even More Good News.

Karen

Reenie

05-12-2006, 03:04 PM

Moving Day!
Just a quick note to report terrific news.

Yesterday, Day 58, Rob moved out of the ICU and into the 'step down' unit around the corner on the 4th floor. He scored a private room because he's still under isolation for residual aspergillus and pseudomonas (visitors still need the gowns and gloves). It seems to be a quieter environment so we're hoping he can get some real rest.

Thanks for your support!

= Haley Thomas =

Linda

05-12-2006, 04:08 PM

My prayers continue! This move does seem like a giant step - Linda

Cynaburst

05-12-2006, 05:28 PM

Amen to what Linda said.

eatwell

05-13-2006, 04:59 PM

REST? Can't believe there is much of that going on in a hospital!! But, yes, a private room is at least is a step up (I prefer that to step 'down', it is an improvement!!) from the ICU. Progress, yeah!

Laura
Happy Mothers Day, Haley, is there a Happy Wife's Day?, you're the winner on that one!!!

Pam Alexson

05-13-2006, 06:37 PM

Glad to hear that Rob is out of ICU. I hope all continues in a positive direction.

Pam

Midge Rollins

05-14-2006, 09:10 PM

This is the best news we have had in a long time. Keep going rob.

Stuart Schwartz

05-15-2006, 07:18 AM

From Haley

Sunday, May 14, 2006
Rob's Condition as of Sunday Night, 14 May
It's Day 61 and Rob continues to do much better in his regular hospital room. He is managing to get more sleep than in the ICU, but his quest for a full night's rest is confounded by the 4am x-rays and the surprise midnight CT scans.

The room is better than I expected - it looks like it was converted from a smallish 2-patient room into a largish 1-patient room. It has a wall of windows facing north into an interior courtyard, but if you raise the blinds to the very top you can see some sky.

The room's best feature is its comfortable couch with accompanying chair and side table. It seems like a simple thing, but it makes a strong statement that family is welcome. The ICU's emphasis was on the machinery to keep the patient alive (I can't complain too much because it worked after all), while now the emphasis is on the person and getting that person home. Connor and Shea feel much more comfortable, especially during long visits, because they have a place to be. I'm relieved that there's a place for me to stand or sit during those times when there is a gaggle of nurses, doctors or therapists at his bedside. This is a very big deal.

Rob is still working very hard and making improvements with his PT and OT. He's further along on his goal to make a fist. This is crucial not only for grasping objects but also for walking because he'll start out needing to hold onto parallel bars and later a walker. His hi-tech bed, which I call "The Beast", can get him into a sitting position as if he's upright in a straight-backed chair, from which he can now support his upper body for short periods during PT.

His lungs are clearing up enough that they are changing him to a narrower trache tube. Sitting up, standing and moving around will help his lungs even more in the future.

His heart just keeps on lub-dubbing like it should with no signs of rejection. Many thanks to our Donor for his strong heart.

Our main concern are his kidneys, which haven't kicked back in. Frankly I'm getting ticked at the kidney doctor's perennial sunny outlook, which just feels glib and evasive. Just give us the real scoop so we can deal with it. He probably doesn't have the real scoop.

Meanwhile the calendar pages keep turning and Rob celebrated his 52nd birthday yesterday. Since birthday cake won't fit through his NG tube, we celebrated with a short visit from family who sang 'Happy Birthday' and 'Put Another Candle on My Birthday Cake'.

As a favorite ICU nurse told him, "Happy Birthday Rob, you deserve one".

=Haley Thomas =
posted by Haley at 11:15 PM

Laoshur

05-15-2006, 11:36 AM

What wonderful news to come back to after several days away! I will continue to pray that the improvements keep coming faster and faster.

Rhoda

Debbie

05-16-2006, 01:22 AM

Just want to add my happy birthday to Rob, and continued best wishes. Things are looking much sunnier, and I praise the Lord for that.

Debbie

Cynaburst

05-16-2006, 11:33 AM

Monday, May 15, 2006

Back in the ICU
Rob moved back to the ICU this afternoon. His blood pressure has been very low (7o-something over 40-something) since overnight Saturday and the docs don't know exactly why.

His cardiac output is very good, so his new heart is not the culprit. It could be further infection, or maybe they've been pulling off too much fluid during dialysis.

Rats

Cynaburst

05-20-2006, 03:54 PM

Friday, May 19, 2006
Rob's Condition as of Friday Afternoon, 19 May
Rob is still in the ICU. He is very frustrated and bewildered by how his heart transplant was hijacked by infections and multiple organ failure.

This is really unacceptable. I would really like to give that hospital management a piece of my mind. I'd do the same thing if I sent my car in for a new fuel pump and got it back with a locked-up transmission and no tires. How's about:

"Dear Hospital Management: I sent my husband here 9 weeks ago for a new heart which was installed as advertised and which they tell me is working very well. However, now his kidneys don't work, and he can't walk, sit up, or make a fist. He can't maintain a decent blood pressure. He has two kinds of lung infections and he's breathing through a tube in his throat. He hasn't had a meal since lunch on March 14th. Now what kind of service is this?"

I might send that message if I weren't so grateful that he's alive.

I do believe he's getting the best care available. I believe they saved his life when he was on the brink during the frightening weekend of March 24th-26th. And I believe they are almost as tired of Rob as he is of them., and they want to discharge him just as soon as he's well enough.

Meanwhile these are very difficult days for Rob, perhaps the hardest ever. Please keep on sending the good Karma in the direction of UCLA Medical Center, Cardiothoracic ICU.

Pam Alexson

05-20-2006, 05:34 PM

Good Karma coming your way. Rob is ever in my thoughts and prayers.

Pam

Janet McClure

05-20-2006, 10:13 PM

I can only imagine how difficult this is for both of you. Haley, your strength is amazing. I am sure you are wore out physically and emotionally. Rob is so blessed to have you there beside him. In situations with both my kids, I would always want to know why and felt like I just could deal with it another day. But somewhere the strength would come. Peoples prayers and God's strength always sustained me. Know that we all are praying for you and wish we could do something to turn things around for good. You are on a difficult road right now. You and Rob both are and it probably seems like you have been on this road for way too long and it is full of pot holes and it is continuing up a mountain that you feel you will never get to the top of. But that day will come. Things will get better. I know those words don't really help much. But just know, I am thinking about you so much. Just know I am sending my best wishes and pray that you will have all the strength, patience and love you need! Hang in there! Janet McClure

eatwell

05-21-2006, 04:34 PM

Haley, when all is well again when Rob is home and doing great, please get your self a new job: Stand-up Comic, or cartoon writer!

Bless you, Laura

tommysgirl

05-22-2006, 11:18 PM

Haley
Sorry for the set back. I know that this is very frustrating for both of you. Being sent back to the ICU really stinks! Know that we are praying for ya'll and your in our thoughts always! Take care of yourself. By the way, I second the motion for stand up or a writer if ya prefer.

God Bless!
Sherry

Cynaburst

05-23-2006, 11:48 AM

Monday, May 22, 2006
PT and OT
Thank goodness for Physical Therapy and Occupational Therapy.

Rob is lucky to have been assigned two outstanding therapists, Wendy (PT) and Lynnette (OT). Wendy works the upper body and legs while Lynnette works the hands and arms. Both women have been very impressed with Rob's motivation and work ethic and therefore each has juggled her schedule to work with Rob 5x/week instead of the prescribe minimum of 3x/week.

Unfortunately, in a wretched coincidence, both Wendy and Lynnette are on vacation for two weeks, leaving Rob an orphan. He had only 2 PT sessions last week despite our raising a big ruckus about it. The scheduler just didn't make him a priority, using the lame-o excuse that she couldn't schedule around Rob's dialysis. Granted Rob did have dialysis four days in a row last week and patients are usually totally wiped out afterward. But Wendy and Lynnette always worked around it. Why Lynnette could even do a decent OT session during dialysis. Sigh.

We were understandably relieved today when a substitute PT arrived in the persons of the comfortably-built Lajuan and her wiry helper Seth. Their agenda was simple - Rob Sits Up.

Lajuan and Seth put the bed (aka 'The Beast') in chair mode. This is a very involved process requiring exchanging the inflated footrest with a rigid steel one, centering and lifting Rob up toward the head of the bed, and leading the dozen or so wires and IV tubes into a single bundle over Rob's right shoulder. Seth manned the Beast's controls and incrementally inched Rob's head up and feet down into an almost vertical sitting position. My job was to hold onto the bundled wires and tubes to ensure they didn't pull out while Rob was moved into position.

Lajuan coached Rob during the process. Once his back was at nearly vertical they let him rest a few minutes to get used to it. He rested his back against the bed but he dropped his head slightly forward. His hair is getting pretty shaggy (last haircut was the weekend before the transplant) and it was smooshed flat in the back in a stunning case of bedhead. Perfectly understandable after 69 days in bed.

Seth folded a sheet lengthwise and tucked it behind his back with the ends facing front. Lajuan held onto the sheet ends and gently pulled his torso away from the bed. Rob was sitting up, a little wobbly at first, but very impressive. He looked very strong. Lajuan then dropped the sheet ends and Rob was sitting up on his own.

I traded places with Lajuan. I leaned in to give my husband a real hug, the first in months. With an exaggerated shrug of his shoulders Rob heaved his arms from his lap to reach up and hug me in return.

If this were a movie, Mr. DeMille would have cut to a close-up of the tears welling in my eyes. And my eyes really did well up with tears. Then my nose started running and I had to grab a tissue and put on a fresh pair of gloves.

With Rob still in that glorious sitting position, Lajuan ran him through his paces with several leg exercises and torso-strengthening moves.

People confined to wheelchairs will tell you that they are often overlooked or treated like non-persons simply because they cannot stand eye-to-eye with others. Well, I'm here to tell you that it is doubly worse for those who are bed-bound. It has to be humbling on so many levels.

Maybe that's why Rob appeared to get a huge psychic boost by sitting up with his back free from the the bed. Even for a few minutes.

And that, Ms. Scheduler, is why 5x/week is so important.

Midge Rollins

05-23-2006, 12:08 PM

Haley, this brought tears to my eyes too. You do so well bringing this message to us. Thanks so much. Tell Rob way to go.

Glen Beamish

05-23-2006, 02:57 PM

I can only imagin how good that felt for Rob to be able to assume a different position after this long on his back.
And for you to see it was inspiring too.

shirleymahoney

05-24-2006, 11:09 PM

Please give ROB a big hug it made me cry also and it eally had to feel great to have air on his back,

Shirley

Largehearted

05-25-2006, 07:06 AM

That is so inspiring! Tell Rob we are waiting to get pictures of you guys dancing!

Leon

JohnM2

05-27-2006, 10:04 AM

I, too, found the news about Rob very moving. I'm so pleased to read of some progress, especially after the disappointment of returning to ICU.

I'm looking forward to more good news.

Please give Rob my very best wishes.

John

Stuart Schwartz

05-27-2006, 10:07 AM

From Haley

Friday, May 26, 2006
Out of the ICU - Hopefully for Good!
Rob moved out of the ICU yesterday. He's in back in room 403, the very same room we liked so much two weeks ago. Hooray!

I'm feeling very confident that he won't need a return visit to the ICU. I say "feel" because it's nothing I can really quantify. I just see a stronger and healthier person in that bed. His attitude has always been positive in a "we'll get through this" kind of way. Now it has progressed to "Oh boy, I can't wait to get out there and use this new heart!". We're making plans, some crazy, some more realistic, about how we want to live the rest of our lives.

We've been given a gift of new perspective. Other transplantees had told us that it's both a "life-saving and life-changing" experience. That's the big payoff. I feel that right to my bones right now. All new possibilites are thrown open. Whatever we do from now on will be because we chose it, not because we were sleepwalking through life and took the path of least resistance.

I'm concerned that this feeling will eventually fade and I'll never get it back. All the domesticities will start crowding back in and I must figure a way to keep the feeling alive. I'm not sure what will do the trick. A note to remind myself? A phrase, a mantra? A piece of music? A new car? (just kidding).

We're not planning on going hippie, as if that's even an option in 2006. Whatever actions we take will be the actions of fiscally responsible people with two children. But I'm determined that this new perspective will improve our lives.

Thanks to our Donor for the new heart and the new perspective.

= Haley Thomas =

JohnM2

05-27-2006, 10:19 AM

Wonderfull!!

I'm not sure, Haley, what trick you can use to maintain that feeling. I think that part of it will simply be the desire and intention to keep it alive. I suspect that sometimes it will simply be a matter of making the decision to live with a new attitude.

I've found that when I don't feel particularly happy or cheerful, acting as though I am goes a long way to bringing on the more cheeful, happy me. When I'm at work, where customer service is important, my customers always see a cheerful, friendly John, But, sometimes it's an act.

I wonder if you can apply an analogy here. Sometimes you will just have to "put on an act" of feeling the way you do now. That should help to maintain the feeling.

Your mention of " All the domesticities will start crowding back in" is undoubtedly correct. What you will probably need to do it review all those activities and see if some of them can be reduced in priority. Maybe the grass can be cut slightly less often (and if you cut it long that will make for a healthier lawn anywaY) and perhaps the vacuuming can be done less times per week. Reviewing you priorities should make sure that you really are doing what's most important.

I look forward to reading more good news

John

Laoshur

05-29-2006, 03:03 AM

Hi, Haley,

I know you are not reading these boards yet, but wanted to let you know, when you and Rob do get back here how excited I and all here are to hear your good news. Rob, we are cheering you on to strong arms, healthy lungs, good kidneys and all the things that will enable you to keep fulfill all your dreams and (somewhat coincidentally) write us here again. Haley, as far as your forgetting your new perspective, well, I suggest you just come back here every so often and read what you wrote. You will inspire yourself!

Rhoda

Stuart Schwartz

05-29-2006, 09:01 AM

FROM HALEY

Sunday, May 28, 2006
Bon Appetit
Rob has passed another milestone on his way to feeling like a normal person– no more eating formula through a tube! They removed the obnoxious thing on Friday afternoon after he passed a swallowing test. He can eat real food now and he’s savoring every bite.
On Saturday morning Rob's nurse called me to relay a message "Hospital food stinks. Please bring lunch". He really wanted a hamburger. It turns out he liked the idea of the burger more than the reality. It proved too big and overwhelming. So we tossed it and I brought him some vanilla ice cream from the cafeteria. Heaven.

His meals double as OT because he's practicing his fine motor skills when handling the silverware and drinking from a cup.

Today I walked around Westwood Village collecting take-out menus and we had fun looking them over. Enzo's Pizzeria will deliver right to his hospital room! Yes, yes - later we'll go back onto the healthy diet. But for now it's all about getting some enjoyment back in his life.

Bon Appetit Rob!
= Haley Thomas

Reenie

05-29-2006, 10:21 AM

Thank God for the small things in life!

Reenie

JohnM2

05-30-2006, 05:31 PM

More good news!!!

I'm delighted

John

BlueDevil

06-02-2006, 01:57 PM

Better and Better

Rob continues to make significant improvements. He is still in his regular hospital room, and the prospect of a return visit to the ICU gets less likely with each passing day. We are now looking forward to his being transferred to the 1st floor Rehab unit. After a couple of weeks there he can finally come home.

Meanwhile he is getting regular PT and OT visits and, boy, are they challenging! They are readying his muscles - trunk, leg, ankle, arms, hands - for that astoundingly complex activity known as 'walking'.

Yesterday they strapped him onto a tilt board. This contraption is a flat gurney-type bed that tilts up incrementally until the victim, er, patient, is in an upright 90 degree position. Yesterday's goal was a 30 degree tilt; they blew by that and made it to 50 degrees. This exercise helps Rob's legs remember what it feels like to support his body. Rob's comment about being almost upright: "Wow!".

His kidneys are still AWOL so he's getting daily 4-hour dialysis sessions. His lung infection is greatly improved, though we still wear gowns and gloves as a precaution. Blood pressure remains good. Heart is steady, steady, steady.

I brought him a laptop computer so he can watch DVDs and catch up on the TV shows that we saved for him on TiVo (mostly The Sopranos, West Wing, and ironically, ER). He's able to use the laptop's touchpad instead of a mouse, although the keyboard is still a challenge. It will be no surprise to you that he's working with the hospital technicians to get wireless internet access from his hospital bed.

In the meantime I put a copy of this blog on the laptop so he's all caught up on what happened to him 'while he was out'. Sometime soon he'll be able to make his own blog entries so you can hear from the horse's mouth.

All this good news is brought to you through the generosity of our Donor. Thank you!

= Haley Thomas =

Debbie

06-02-2006, 07:22 PM

Praise God!!! Hooray!!! Hooray!!! Hooray!!!

Way to go Rob and keep up the good work. My very best wishes to you, Haley, too!

Debbie

Laoshur

06-03-2006, 12:06 AM

Wonderful news! I will keep praying for more of the same! Maybe Haley can download this thread for Rob as well.

Rhoda

Largehearted

06-03-2006, 07:11 AM

I have watched this "battle" from the sidelines. It is so exciting to hear that Rob has achieved this level of wellness after being so ill. And the fact that his heart is chugging along just makes me smile! I'm with Rhoda. More of the same please.

Peace,

Leon

Midge Rollins

06-03-2006, 02:19 PM

God does hear and answer our prayers.

eatwell

06-03-2006, 06:03 PM

Awesome!!
Laura

Pam Alexson

06-04-2006, 08:41 AM

Does my heart GOOOOOD to hear such great news about Rob; our friend.

Pam

Toogoofy317

06-06-2006, 12:03 AM

I'm crying tears of happiness that my buddy is doing so much better! During my issues at the Gainesville torture house he coached me through and that meant the world. Can't wait to hear from him personally!

Love ya Rob!

From the New Mickey Mouse Cop!
Mary S.

BlueDevil

06-06-2006, 09:05 AM

Monday, June 05, 2006

No More Trache!

The milestones just keep coming!

Yesterday the good doctors unceremoniously removed Rob's trache tube and collar, and slapped a bandage over the hole. It's a little freaky that no stitches were required. He's now on 100% room air and doing fine. He sounds like himself again, with just a little residual throat raspiness.

Next stop - Rehab! Rob has been accepted into UCLA's "One West" rehab center (really just the 1st floor of the same hospital building) for 2-3 weeks of intensive PT and OT. The doctors say he's ready. The nurses say he's ready. The PT and OT therapists say he's ready. The family say he's ready. However, they can't move him until they get final clearance from ....the insurance company. We hope that will happen tomorrow and they'll move him downstairs.

Rehab has some tantalizing benefits. He'll have his own wheelchair so he'll be able to go on outings. Top destinations are 1] Outside in the Courtyard where he can get reacquainted with his biggest fan, our dog Marley Bones; and 2] The Cafeteria. Another huge benefit: A Real Shower!

Meanwhile we're enjoying visits in his comfortable 4th floor room. Here are Rob and Shea during our visit yesterday. Rob is actually seated in a 'cardiac chair' which is gurney-type bed that converts into a chair.

======Can't get the photo to load...will try later==========

Speaking of beds, Rob has bid farewell to The Beast and is now in a regular hospital bed that is equipped with an extension to accommodate his 6'5" frame. The change was needed so PT and OT could get him seated with his legs dangling from the side of the bed (couldn't do that in The Beast). He has sat up several times and he no longer gets dizzy in that position.

Just this morning our wonderful PT-ers Wendy and Joe helped Rob into a standing position with his feet on the floor. This was an interesting process. While Rob was seated with his legs dangling, they gave him a simultaneous bear hug from the front and lifted him upright. As of today Rob is officially bipedal again - he stood, albeit with support, for 22 seconds!

In closing, I apologize for exceeding my quota of exclamation points in this posting. However I'm sure the puntuation police will back me up this time.

Thanks to you all for your continued support and encouragement. We are privileged to know you.

= Haley Thomas =

eatwell

06-06-2006, 11:34 AM

Standing up!! YEAH!!!!!! I'm sure you can't wait to do a nice little dance together with a huge hug!!

So good to hear the great reports!

I add my own excessive exclamation points!!!!!!!

Blessings, Laura

Reenie

06-06-2006, 01:34 PM

You have absolutely made my day.

Reenie

JohnM2

06-06-2006, 08:19 PM

Me to!!!!!

That news made my day, also. Woke up not long ago, ready for supper (did night shift last night) and had a look at the updates from HCM. This was undoubtly the best I've read for a while.

Cheers!!!
and More Cheers!!!!
and MORE CHEERS!!!!!!!!!!!

shirleymahoney

06-06-2006, 09:31 PM

I'm so proud of Rob, It really sounds like he really coming along your entire family is in my prayers

Shirley

Pam Alexson

06-06-2006, 09:41 PM

Way to go Rob....Keep going in this direction and you'll be back here soon with us. This was indeed a very delightful and HEART warming post to read!!!!!!

Pam

Midge Rollins

06-06-2006, 10:15 PM

Thanking God that the news is so good. Rob will be kept busy reading all of these posts.

BlueDevil

06-07-2006, 11:07 AM

Haley was able to get the picture loaded, so it's now viewable on the blog site.

http://heartforme.blogspot.com

Reenie

06-07-2006, 12:15 PM

Thanks for the link, Tim.

Reenie

Pam Alexson

06-07-2006, 01:25 PM

That was great, thanks Tim. He looks good for all he has been through. Nice to see him.

Pam

shirleymahoney

06-07-2006, 10:44 PM

I think he looks GREAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Shirley

Stuart Schwartz

06-08-2006, 09:30 AM

From Haley

Hello Rehab!
After an invigorating last-minute tussle with the insurance company, Rob received final approval to transfer to Rehab today. He moved to One West after this afternoon's dialysis session. He's in a sunny private room with a view of trees and sky. But he won't have to settle for just looking out the window - he will soon be going outdoors.

My happy assignment for tonight is to pack several sets of Rob's clothes. You can bet he is looking forward to shedding the indignity of the hospital gown.

In another step toward normality Rob has been unhooked from all the machines, monitors and pumps. At this moment he is hooked up to....nothing. No IVs, no EKG, no O2. He'll keep his dialysis port, of course, and his semi-permanent IV PICC connection just in case he needs it later.

He has his work cut out for him in Rehab. But he's ready. He's ready.

= Haley Thomas =

Eileen2345

06-10-2006, 08:24 PM

You look great Rob!
I wish you the best. You deserve it more than anyone.

You Rock!

Continued well wishes and prayers.

Many hugs to you both,

Eve

Debbie

06-12-2006, 12:16 AM

I second Eileen's post.

Way to go. Pulling for you guys always.

Debbie

JohnM2

06-12-2006, 09:03 AM

More good news. I'm so very happy to read the news that Rob's moving to Rehab.

That really was a great start to my day.

Cheers, and more cheers

:) :) :)

John

Pam Alexson

06-12-2006, 10:48 AM

Keep hanging tough Rob!

So glad to hear the positive progress you are making.

Pam

Reenie

06-12-2006, 03:28 PM

While we were at the meeting Saturday night some of the HCMA members called Rob's room. He was able to talk to them and he sounded great! Way to go, Rob!!!

Reenie

delfam

06-12-2006, 04:29 PM

Rob keep up the great work:)

Cynaburst

06-15-2006, 01:17 AM

Guess what? I went to visit Rob in the rehab unit at the hospital tonight. He looks amazing. He is back to his old self. We chatted about the HCMA meeting, who was there and who I met, about Mayo and my upcoming visit there, and general life stuff.

His color is good, his blood pressure is good, he is able to move his arms and hands quite well, and is working on strengthening his lower body. He thinks he will be in rehab for several more weeks, so I will be able to go see him again soon. The rehab unit gives him PT and OT twice a day, and he says he is able to get much more rest down there than in the regular hospital.

He has a laptop, which he can't really surf the net on, but he can watch TIVOed programs. He says that he was able to catch up on the whole season of The Sopranos. He is reading a John Grisham book, and is doing his best to pass the time until he gets to go home to his family. Once he gets there, he is planning to finish the boat that he started building 8 or so years ago before he started feeling really bad.

So, my report is A+ for Rob. He is really working hard, and will be out of there in no time I am sure. He has an amazing attitude and we can't wait until he is back here on the boards. He says that once he gets home, he will read this thread which is so long now, he may need a week!

That's the report from Los Angeles today. I will write more as developments occur.

Cynthia

Debbie

06-15-2006, 01:34 AM

I am so glad to keep hearing the great news about Rob! Sounds like things just keep getting better and better.

Yea!!!!

I just wanted to thank you guys for keeping us updated all the time, it really means a lot to me. I get on the board as often as I can to look for news about Rob, so I really appreciate it.

Debbie

Midge Rollins

06-15-2006, 06:56 AM

cynthia, thanks so much for the update. It is great to get such good news. Way to go Rob! Maybe in 2 years you can join me in the transplant games.

Pam Alexson

06-15-2006, 10:00 AM

What a great message !

Thank you for making that special visit Cynthia and for describing it so well... was like we could see him ourselves. You are so kind to keep us informed.

Way to go Rob!!!!

Pam

Reenie

06-15-2006, 11:45 AM

I'm so impressed with his progress! Way to go Rob!!! Cyn, thanks for the update on your visit with him. It helps me visualize just where he is with his treatments through your description.

Reenie

tommysgirl

06-15-2006, 12:41 PM

Rob looks GREAT!! I'm so glad to read about his continual progress. It is wonderful to know that he is closer to being home. I will pray for him making it home by the end of June. Keep ya'lls chins up. Rob, keep reaching for those stars!! You are an amazing man and have come through so much.
Look forward to your return home and back to the message board.

God Bless!
Sherry & Tommy

Linda

06-15-2006, 04:07 PM

Cynthia - Thanks for the wonderful report. I'm sure Rob was delighted with your visit. Linda

THW

06-16-2006, 09:09 AM

Cynthia, Thanks for sharing!

Rob, You've got what it takes! Keep believing; you'll be home soon!!

Blessings,
Theresa

BlueDevil

06-20-2006, 08:55 AM

(NOTE: The post on the blog site has three pictures.)

Saturday, June 17, 2006

Hard Work

Rob is doing the hardest work of his life in rehab. He has regulary scheduled PT and OT for about 3 hours a day, Monday - Saturday, broken up into 1/2 hour or 1 hour sessions. During the down time he has a full plate of exercises that he does on his own. Most evenings he also has a 4-hour dialysis session too.

His day starts with breakfast in bed, and the PT staff help him get cleaned up and dressed. They transfer him from the bed to a wheelchair, and head down the hall to the gym. Rob can inch the wheelchair along on the flats using his hands and shuffling his feet. Thresholds and throw rugs are real obstacles, as are the hills and valleys in what might appear to be a flat floor.

His gym time is devoted to getting him ready to stand up. The PT staff transfer him from the wheelchair to a low padded table. From there they work as a team with Rob to pull him to a standing position and hold him there as long as possible, usually a minute or less. They will try this 3 or 4 times in a session. The rest of the session consists of leg stretches and muscle building exercises. Then he is transferred back into the wheelchair and he heads back to his room. He is supposed to stay seated in the wheelchair as long as he can, which can be a couple of hours. If he's really fatigued they will move him back to bed for a while.

He is frustrated that he's not making faster progress. He's ready to come home *now* but that can't happen until he can walk. Speaking of home, I filled out a detailed questionnaire that will help the PT people get Rob ready for the obstacles he will face at home. Just how many inches is your toilet seat from the floor? How many steps are there to enter the house? How high? How wide? How deep? Any railings? How high and wide is the shower's threshold? How wide are each of the doorways?

During his down time I try to take him for a spin outdoors to help him remember what the sky looks like. Yesterday we brought our dog Marley Bones to the hospital's courtyard so Rob could be reacquainted with his most ardent fan. This is an event we have looked forward to ever since Rob was in the ICU - thanks to Linda Laing for suggesting it way back then. It was a great reunion of the whole nuclear family.

More hard work ahead. Many thanks to our Donor for the opportunity.

= Haley Thomas =

Reenie

06-20-2006, 11:37 AM

Thanks for the update. The pictures are great!

Reenie

Pam Alexson

06-21-2006, 09:16 AM

Great praise for all you have accomplished so far Rob. I know this journey for you is long and whinding and very often uphill but, if anyone can do it , YOU CAN.

We all continue to support you and pray for your recovery daily.

Pam

tommysgirl

06-22-2006, 12:11 AM

Way to go ROB! I'm glad you got to the family dog. They are very much our family members. As they say "You've come a long way baby!" Keep up the great work. Haley many praises to you for keeping all of this together and having the time to keep us updated. Many prayers are coming your way!

God Bless!
Sherry

Janet McClure

06-25-2006, 10:32 AM

I am so glad things seem to be moving along for you guys. I know family pets are awesome and can do so much for a person. Since I have been divorced, my dog and I are extremely close. When the kids are visiting their dad she keeps me company and I really don't know what I would do without her. She sleeps with me every night.

Hang in their Rob, we think of you daily! Janet

tommysgirl

06-25-2006, 01:11 PM

Keep up the great progress ROB. Hope ya get to visit with the family pet as often as possible. I know our lab "Shadow Mae" keeps Tommy company and brightens his bad days. Prayers and positive thoughts coming your way daily. can't wait to see pics of your arrival home. It's coming!!

God Bless!
Sherry

delfam

06-25-2006, 05:24 PM

Rob keep up the great progress and recovery. Know that prayers are made for you each day.

LindaG

06-25-2006, 05:36 PM

How wonderful for your husband. I hope he recovers quickly and has a full and happy life.
Being an organ donor is a wonderful thing. More people should read these happy stories and consider it.
Linda

THW

07-03-2006, 02:37 AM

posted by Haley at 8:26 PM
http://heartforme.blogspot.com/

Gotta Have Heart
Rob's Journey Towards Becoming a Heart Transplant Recipient
Sunday, July 02, 2006

The Long Slog
Why haven't I written a blog entry for so long? What's going on with Rob?

Well, I guess there hasn't been that much to report. Every day is a slow news day. It's very different from the dark days in the ICU when Rob's condition could change dramatically from one hour to the next. His life has been saved. Now comes the decidely undramatic part of the story - getting strong enough to walk.

And what a long slog it is. Everyday except Sundays Rob has 3 hours of PT/OT. Progress is slow going but it's still progress. He's not walking or even standing by himself yet but we see improvement nonetheless. He can push himself up into a sitting position in the bed now, with his legs dangling over the side. From there, on a good day, he can scoot himself over onto his wheelchair. On a not-so-good day, a helper needs to attach a canvas belt around his middle and grab that to help him into the chair. He is much more adept now at pushing the chair with his hands and/or shuffling along with his feet (both skills that I hope he has no use for later on).

In many PT sessions he parks his chair between the parallel bars where he is helped to a standing position. A therapist will give him a bear hug from the front with while another helper grabs him from behind, Rob grabs the bars and all three together hoist him up from the chair. Rob then keeps standing for as long as he can, I've seen as long as two minutes, while the therapist gives him direction "Get your hips forward Rob", "Keep that left knee locked", "Shoulders back", "Hips FORWARD", "OVER your feet". They'll do this several times in a session. This exercise helps wake up all the muscles he'll need to stand on his own. His muscles are getting stronger, but they aren't yet to that magic threshold needed to drive his own body to a standing position.

The PT folks have admitted that they rarely see patients as big as Rob. It's rather comical that when standing, the patient absolutely towers over the caregivers. They have told us that a person of Rob's stature needs to be even stronger than the average person in order to walk. Make sense to me.

So the days drag on and Rob continues to will himself through the grueling regimen. He is determined to make the most of the opportunity of in-patient rehab. He's sore, he's tired, he's sometimes grouchy, but he is always determined.

I can sense the staff is trying to lower our expectations a bit. We're starting to hear "You can bring home a wheelchair for convenience" kind of talk. We're very concerned about this. Rob and I both are convinced that he needs to be walking before he comes home. The reason is simple - three steps up from the garage to the kitchen and a very narrow door flanked directly by a countertop on one side and a refrigerator on the other. The two other possible entrances have even worse obstacles.

Plus I don't want to bring him home in a wheelchair. I want him walking. Period.

Meanwhile Rob's kidneys still haven't gotten the memo that it's time to start working again. I now have the unenviable task of checking out our local out-patient chronic dialysis centers. The UCLA dialysis staff have coached me on what to look for in a good center, which is a good thing because this is totally out of my league. I plan to visit three centers and give my report to Rob so he can decide.

His heart, happily, is another story. It keeps pumping without any signs of rejection. The heart is working so well they are even reducing the dosage of a couple of his meds. Many thanks to our Donor and his family for this good news.

I still visit him, although I am allowing myself a day off every now and then. The nature of my visits these days is nothing like they were in the beginning. Back then my primary purpose was to make sure I understood what was going on - what drugs, procedures, vitals, and the ever changing prognosis - and to be there in case something happened. There was no more reliable way to speak directly to his many doctors; I just had to be there when they popped in. And my Best Friend was always the nurse who was assigned to him for that shift.

These days Rob speaks with the doctors and then he tells me what they said. My visits are mostly for companionship, motivation and moral support. I also shuttle his laundry back and forth, but I'm pretty sure that's not why he's glad to see me.

I love to remind him that I remember what he was like before he was a patient. Why, I even remember him before his illness took over his life. This ordeal may seem endless, but it's really only one episode of our long relationship.

I am still doing my best to hold down the fort. Both children are out of school, so that is requiring much more of my focus these days. Rob already has a long list of holidays and family milestones that he's missed, and with the 4th of July coming up, that list is getting longer. He missed Spring entirely. Connor had his class trip to the East Coast, his school play, 8th Grade Culmination, registration at San Pedro High School, and his first week at drama camp 100 miles away in the San Bernardino Mountains. Shea now knows the real deal about Santa Claus, finished the 2nd Grade with a stellar report card, and celebrated her 8th birthday last week. We've marked St Patrick's Day, Easter, Spring Break, Mother's Day, our 18th Wedding Anniversary, Memorial Day, Father's Day, and even Rob's own birthday without him at home.

Makes me feel somewhat of a kindred spirit with the spouses of people serving overseas or merchant mariners.

Thank you all for your relentless support of Rob and our entire family. Keep thinking those bipedal good thoughts for us.

= Haley Thomas =
posted by Haley at 8:26 PM

THW

07-03-2006, 02:41 AM

Continuing our prayers for you, Rob, and your entire family! Be as grouchy as you want, when you want, but keep up that determination! Progress is progress, and we're proud of you!
Blessings of continued hope, strength, healing, & DETERMINATION,
Theresa

Debbie

07-03-2006, 11:26 AM

I was so glad to get some news on Rob.

What a long road these guys have in front of them. Rob's gift of life will have been hard-earned by the time this is over, but the good thing is, he will have life.

I hope and pray that things keep improving for Rob. Haley... what a strong woman! An incredible couple pulling together and climbing the mountain in front of them.

My best regards and wishes to Rob, Haley, and their family, always. I know that if the concern and caring from the HCMA community could be bottled and given to Rob as medicine, he'd run a marathon tomorrow.

Debbie

JohnM2

07-03-2006, 04:27 PM

I'm glad to read of continuous, steady progress, even though it seems so slow.

Missing all those family events is hard - especially an anniversary (I was separated from Margaret last year for or 38th, the first time we haven't celebrated together, and we both said "never again".

I do hope the progress continues.

My best wishes to both of you, and your family.

John

tommysgirl

07-03-2006, 10:31 PM

Keep up the good work Rob! You've had to travel a long hard road (you to Haley), I know that the slow progress can get ya down, but we are all here to support you. Ya"ll are a continued inspiration for all of us at HCMA!! We continue to pray to your entire family. Keep your chin up and keep reaching for those stars!!

God Bless!
Sherry

angall

07-03-2006, 11:08 PM

Hi Haley & Rob. I'm so happy that Rob has a new beginning with life now that he has a new heart.

I received my new heart April 11th, I was hospitalized at the time I was told by the cardiologist that they thought they had a heart for me it was like "yes" finally. There was a chance that this heart wasn't a match, but I knew that from the beginning. I just prayed it was. From there the rest is history. I did run into some complications, but I'm here to write about it and I feel good, a little tired, but I was told that my body went through a tramatic experience and needs to recoop.
Rob.....the wait and patients is well worth it.
Haley..... I salute you. I know what my husband went through and at times I believe he had more on his shoulders than what I had on mine.

Please keep in touch.

Pam Alexson

07-05-2006, 09:56 AM

So happy to hear the ongoing progress of Rob. Keep hanging in there.

Pam

Cynaburst

07-09-2006, 01:33 AM

Hi everyone,

Well, I went to see Rob again today. He is doing amazingly well. There was a big improvement since the last time I saw him which was a little over 3 weeks ago. In fact, today for the first time he was able to walk up and down the hallway outside of his room with the help of a walker. He said that he has been able to move a few feet at a time before, but this was the first time he was able to go any distance, even with the walker.

All of his motor skills are much improved since the last time when he was pretty much still confined to bed. Today with him in the wheelchair we went to the hospital cafeteria and sat outside for a little while. Luckily he was pretty much able to propel himself in the wheelchair with minimal pushing assistance from me since Rob is something like 6.5 feet tall and weighs somewhere in the mid 200 range, while I am waiting to get a myectomy!

Talking with Rob is just as it was before the transplant. His mind is just as sharp as ever. And the big news is that he is scheduled to be discharged in about 10 days and will go home to be with his family! He is really looking forward to that. He will however have to be on dialysis near his home for the time being.

Well, that's the news from here. I hope that I will be able to visit with him one more time before I go off to my myectomy. His house is located about 30 miles away from me, while the hospital is only a couple, so I will do my best to try to visit one more time before I get my wings clipped by the surgery.

Faithfully submitted by your West Coast HCMA Correspondent -

Cynthia

Reenie

07-09-2006, 02:28 AM

Thanks for the update, Cyn. You make a good West Coast HCMA Correspondent! ;)

Reenie

Largehearted

07-09-2006, 06:48 AM

Cynthia.

Thanks for that update. After all the ups and downs from Rob's earlier experience it is so good to hear of his continued improvement.

By the way. Do they pay you well for that corespondent job?:D

Leon

Pam Alexson

07-09-2006, 08:13 AM

Cynthia,

You are such a good reporter/ correspondent. Our west coast girl, I love it! What a great visual I could see in my mind as you were reporting on Rob's progress.

Thank you for the update. I am thrilled beyond words for Rob and his soon to be re-united family.

Pam

Laoshur

07-09-2006, 08:42 AM

Thanks so much, Cynthia, for your help with keeping us up to date on Rob and best wished for your upcoming myectomy. We should have an online party when Rob comes home!

Rhoda

Abbygirl2

07-09-2006, 10:23 AM

I haven't posted much but am always watching and waiting for news on Rob's progress. It has been such a long and tough road for him, and I am so thrilled to hear that he is doing so well.

Thanks Cynthia for bringing us all a little closer.
BTW, we'll be watching out for you too as you go through your myectomy.

Hugs
Pam

tommysgirl

07-09-2006, 05:19 PM

Thanks for the update on Rob. We are so happy to know that he will be home very soon with his family! I can visualize it, what an exciting day that will be!! An online party sounds great. We can all celebrate with him and his family.

Westcoast girl, you take care of yourself and keep us up to date on your myectomy. We will all be here to pull ya through! Thanks for your dedication!!

God Bless!
Sherry

BlueDevil

07-10-2006, 09:02 AM

Building on Cynthia's report:

Sunday, July 09, 2006

Coming Home!

Big news - Rob's estimated discharge date is Wednesday, July 19th. The Rehab team picked that date because Wednesday is their usual discharge day, and they figure that Rob has made as much progress as he can as an in-patient.

Hooray! Wa-hoo! He will be coming home at last after 18 weeks in the hospital! That hackneyed phrase "better late than never" suddenly seems so wise and profound. This homecoming was a heartbeat away from never happening. We're overjoyed! We're thrilled!

But...

Rob will not be walking in the door. They're sending him home in a wheelchair with instructions regarding the placement of grab bars and ramps and the purchase of home healthcare equipment. He will continue his PT in San Pedro as an out-patient and will keep working toward being a full-fledged biped. Both the wheelchair and the ramp are rented and we look forward to returning them ASAP.

Rob's therapist commented that it generally takes a week of therapy to recover from each day of being bedridden. Let's see, he was in bed for 12 weeks, so that makes...forget it. I'm not interested in doing the math. Rob's recovery hasn't been typical so far, so let's just see what happens.

So our happiness is tempered by some disappointment (Jeez, those Thomases are never satisfied!). But he will be back home in the real world. Hooray!

In other news, Rob's nephrologist chose July 4th to tell him he thinks Rob's kidneys are permanently damaged. Even though we were expecting this, it hit like a sock in the gut. Rob called me with the news early that morning and I could feel hot tears on my face while I was telling him "Sweetie, we can handle this". I cried again when the kids and I visited him later that day. Damn.

This means 3x/week dialysis in the near term and a kidney transplant in the long term. Frankly we're still trying to wrap our heads around this one.

You know, in the final analysis Rob got what he asked for - a cure for hypertrophic cardiomyopathy. He knew that he would be trading in the old problems for some new ones. That's exactly what happened.

Once more we thank our Donor for giving Rob a strong heart. We promise that this Second Chance will not be squandered.

= Haley Thomas =