It is time...

[Toogoofy317]

I received a call from Dr. M. Maron today. I just assumed it was going to be the usual followup from a hospitalization. Try a new med and see. But, this time he said something else. "It is time for you to go for a heart transplant" "We have exhausted every medication out there. Even tried supplements and off the wall meds but its not working. You're young and you have no quality of life for a 24 year old." So he gave me instructions to have my local guy give me a referall to the UF Shand's hospital to start the workup. He said at that point he will give them all of the info to back me up on getting the transplant.

I knew this "day" would eventually come be didn't know it would be "today".

I would apprecate any information and support about this process! I'm experiencing so many different emotions right now it's not even funny.

Thanks.
Mary S.

[Donna]

Mary, I am glad that you will now get the help that you need. I know this has to be scary for you but it is the best news that you could have gotten. From the letter I have read form people that have gotten one, its seems to be a whole new life waiting for you.

My thoughts and prayers are with you. I pray for your peace of mind and all the good things that can come your why.

[Sarah]

Dear Mary

I know that must be scary as all get out, but at least if you are on the transplant list, you can't be denied disability, right?

Huge hugs! We are pulling for you,

Sarah

[Lisa Salberg]

Mary,
You have not been happy for far too long. Your health has been a very big part of what has been happening over the past 2 years or so. I am happy that there is a direction for you at this time, however I need to caution that the road to transplant is not and easy one and has many bumps... you will need to prepare yourself for this journey.
You will need support, you will need inner strength, you will need good doctors, you will need good emotional help, you will need some luck too. This is a tall order and one that will take time to put together.

I know you called on Friday and I was unable to take your call, I am sorry, I will get back to you as soon as I can.

Take care,
Lisa

[karen cicconetti]

Stay positive . One of the most important things is having a positive attitude.Believe me I know.




Stay well .
Karen

[dreamcatchinglady]

Dear Mary.
You are in my thoughts and prayers. I am waiting for transplant too. I am 31 and have been waiting since October 8th of last year. We must stay positive and think of all the things we can do after transplant. I have had 3 members of my family that have had transplants. My cousin passed away a few weeks after hers but the docs said she waited too long to go on the list.My dad had a transplant as did my half brother. My dad is doing fantastic. In fact the year after he bought his first Harley Davidson. He celebrated his ten year anniversary of getting his heart.It's a tough road for both of us and others who are waiting for transplant but we have the great members of HCMA like Midge, Lisa and all the others to talk to and Friends and family. We can share stories too. Take care and God bless

[Midge Rollins]

Mary, you are on the road to an incredible journey. Testing and waiting will sometimes seem like forever but your attitude is 99% of getting through it. I like Lisa know you have not had a good quality of life for a long time. You are too young to have to live like that. During my transplant journey I met a 20 year old who lived his whole life with heart defects he is now 1 year out and you can not hold him down. Also met a 29 year old who had viral cardiomyopathy and she is doing great. Your quality of life will be so much better. I walked 2 miles this morning and then just finshed painting my bathroom. I will pay for it but just think I did it. You will learn a lot in the next few weeks. But do get good physician referral and educate yourself. Transplant is not easy but there is light at the end of the tunnel. If you have any specific questions and want to pm me please do so. You are in my prayers

[karen cicconetti]

Dear Mary

The best thing is take it one step at a time, get a good doctor and ask questions. No question is a stupid one!! If it is on your mind it is important. Try to find a support group they can really help. They can help you everything you are going through. My first exoerience at a transplant group was after my transplant the first person I met was 18 years out (that was 7 years ago) I see once him once a year for his annual he now lives in Florida, and is doing fine. This forum is also a great source of information and I know anyone who has had experance with transplant will try to help in any way.


Stay positive
Karen cicconetti

[Toogoofy317]

Thank you all very much on your thoughts prayers and reassurances. It reminds me that there are so many loving people in this world. I am amazed at how many friends I now have. And they are all over the world.

A special thanks to Rhoda, Karen and Bryan. You guys jumped right into action and it meant so much for your PMs.


Mary S.

[angall]

Mary

Finally something positive is happening. I know from reading your posts that you were very depressed, this is very understanding weighing what you have been through.

Like others have posted, this is going to be a very stressful wait.

Please know that you are in my prayers.

[Lisa Inman]

May your birthday be the beginning of your rebirth path. How fortunate we are to have HCMA people to guide us through our "next steps" whatever they are, especially when it is this big. I'm rooting for you, Lisa Inman

[Eileen2345]

Mary, you are in my thoughts and prayers. I wish you the best.

Big Hugs,
Eve

[progers]

Mary,

I wish you the best luck in getting a new heart and know that when it happens it will be the start of a new life for you. As everyone says it will be a long road, but hang in there, things can only get better!

When you said that you knew for a long time that a transplant was coming, what do you mean? Did your doctors say something to you in the past to make you feel this? If so, what?

Good luck. We'll all be watching out for news in the coming months.

Paul

[Dolly (Andrew's mom)]

Mary,

My many thoughts, good wishes and prayers for you as you start this new journey toward a better quality life. Stay strong!

[jmurray]

Mary,

Boy did I miss something big when I was out for surgery. I am so glad to hear that you are on the journey of recieving the gift of life. When I was at Mayo I noticed that they do a ton of heart transplants and they had a map of everywhere those people lived. I was stunned and impressed. Keep very positive thoughts going. I'm sure the wait will be difficult but take it all step by step. You can do this thing!!!

I will be praying for you!

John

[Linda]

Mary, You are always in my thoughts and prayers - Linda

[Debbie]

Mary,

I just wanted to send you my best wishes for a quick result to all of this.

Debbie

[Toogoofy317]

First of all thank you all very much I really needed that reasurance today.

Now, let the head banging began. Or at least that is what it felt like. I went to the local cardiologist hoping to get my referral to UF so I could start the process. Well, they were like um we don't do the referrals here! You have to go to Translife. To get this answer it took an hour. I was like "who are they". The people you need to talk to about the transplant. Ok I said how do I contact them? Uhm I don't know was the response. I told them they better find out. So, the secretary pulled out a phone book and looked up the number. They said call them and they would set it up.

So, as it was I was already heading tward my PCP's office when I had my accident. When I got there the most important thing was make sure I hadn't broken anything. Then I told her what my plans were for the rest of the day of going to these Trans life people. She said "NOT A CHANCE" today. So, she had one of her nurses start the calling for me while I laid on the exam table in a heap of pain.

I was so happy it was them calling because the number I had gotten were for Kidney transplants! AAAARGH! They had no clue what my cardio office was talking about. She was on the phone about half an hour was constantly transfered and then treated like krap because she was trying to get info on who to call. Finally, someone told her to call Shands and ask them! OY VEY! All of this for nothing! My PCP asked me to please call Dr. Maron tomorrow so she can talk to him one on one hopefully so she can start the process herself. At this point I was sitting in one of the office chairs and I guess she saw how stressed and in pain I was. She stood there for about ten minutes and massaged my whiplashed neck. If doctors were half as nice as her we'd all be happy sick people at least.

So, here we go again tomorrow! Let the saga begin!

Mary S.

[Midge Rollins]

Good grief. Is there anyway you can transfer to a center that takes care of HCM and does heart transplants? Your life would be so much easier.

[Pam Alexson]

Mary I wish things would smooth out for you, but alas it does not seem to go that way for you. Like everyone here, I hope a new heart is in your not so distant future. I guess the first tough part is cutting through all the prep part. Good thoughts and prayers for you.

Pam

[mtlieb]

Mary,

I'm never quite sure how to respond to posts like this... I'm sorry that it has come to the transplant option, but I'm so glad that you have at least been given this opportunity? Mixed-blessing I guess.

I have no idea what it is like to go through the transplant process, but from what I have read here it sounds like it is a long and arduous journey with many ups and downs along the way. I know a lot has happened to you lately, much more than anyone your age (or any age for that matter) should have to go through.

My only advice (for what it's worth) is to try not to let the day-to-day stuff bother you so much. Hunker down and get into the fight for the long haul, and deal with the daily battles as best you can.

Let's hope that a new heart comes along quickly, for everybody here that needs one.

Jim

[Toogoofy317]

Well, another disappointing day!

I got to talk with the local cardio today. My PCP made an emergency visit for me to have my AICD checked out.I told the cardio that it was very tender around the site so what does she do poke it. I grimmaced in pain and said that hurt! Just checking she said(I wanted to slap her.)
Then I flat out asked her about the heart transplant referal. She said that I was no where near needing a heart trasnplant! She went on to say they didn't ever think it was an option for me! She talked down to me which I didn't really appreciate. " do you know what a transplant is what you will have to do and It could reject at any time." I told her yes I do. I wouldn't even consider it if there were other options! Then she said you didn't even qualify for disability how on earth would you even get on the list! I reminded her that I couldn't even do the secretary job and she came back with we don't think all of the pain is coming from your heart krap again! She said that they would consider it if Dr. Maron called and pleaded his case with them would they write this referal. I don't know but why is it that one of the top guys in HCM has to PLEAD his case to a bunch of knuckle head cardiologist down here who can't even give me the right number to begin with!

Now some good news of the day. If you can say that.
I went to my chiropractor. The cutie with a heart ccndtion. I swear he is the only doctor thst sympathise with what I'm going through! His mom has HCM. But, Dr. Asher said he didn't still sounds very supicous though. But, it was at my tending that he go see Asher so I'm ok with that. He examined me and it looks like my c5-7 (neck) is messed up along with my entire lumbar back. He said its going to take several weeks to get it straightened out. He said "I'm not gonna charge you. I'll just charge to the insurance company whatever they don't cover don't worry. You helped my mom and she now has an AICD".I was ready to cry. He just ate a lot of money because treatment will be three times a week and will consist of adjustments, ultrasound threapy to the back, heat therapy, massage. He treats his patients well.

With my PCP and Primary being this kind makes it hard for me to bad mouth the docs :wink: I guess in that aspect having a good doc is a blessing.

Will keep everyone posted on my progress!

Mary S.

[fausto.freire]

HI Mary:

Only today I saw your post about the transplant. I just want to wish all the best in world. This will be the start of new (and much better) life for you. But do not forget what Lisa said: “you will need to prepare yourself for this journey”

Best whishes from a friend in the other side of the Atlantic Ocean

Fausto

[Toogoofy317]

Thanks Fausto,

If I could only get started on this journey would be nice! I talked to Dr. Maron yesterday and he said "yes I will talk to them and plead my case. I hope they are ready for it." I guess they weren't I took the number he gave me and the secrtary caught me in the hall way before I left. " Uhm, the nurse practitioner is on her honeymoon. And we aren't sure where the other Dr. is."

Looks like the waiting has begun before I could even get started!

Mary S.

[NoCrash]

Mary,

Have you taken a treadmill/bicycle exerciste test where O2 uptake was measured? If so, you should have a number for vO2max or VO2 peak or another number expressed in METS. This number, not EF, is one of the key criteria for transplant listing. The listing criteria are discussed in the links I posted. The number also does wonders with the folks evaluating for disability.

If you haven't taken this test then I'd suggest talking to one of your physicians about getting it done and putting alot of this discussion to rest. It is the most meaningful way of quantifying your need for a transplant.

Regards,
Rob

[Toogoofy317]

Actually,

I believe I did take that test up in Boston. But, I had a bad blood pressure response to it. My bp dropped to like 60/20 and I passed out. I had to be taken to the ER where they had to pump me full of dopamine just to get it to rise. I ended up spending three days in ICU and about a week in the hospital! So, to say I never got the results of the test. But, Dr. Maron did so if he is recommending this route, did that mean I did bad?

I never even thought much more about that test. Bad experience to say the least. I've not even had a stress test since!

mary S

[Midge Rollins]

Mary, that is a real important test for pre transplant as Rob says. All of that should be in your records from Dr. Maron. Re apply for disability. When my diagnosis went to Restrictive Cardiomyopathy I got it in weeks.

[NoCrash]

Yikes! My blood pressure went down during that test, but yours absolutely hit the floor. No wonder you passed-out.

If there was a VO2 peak result from that test you should be sure to get it. I suspect you'll be able to use that as a bludgeon on your local cardios and the SSA. If you get the number feel free to give me a PM and I'll try and help interpret against the transplant criteria.

Cheers,
Rob

[Joyce Leinart]

Mary,
Although I don't post that often I have been reading you "saga" now for several years. Just wanted you to know I was sorry to hear you need a transplant. You have had so many problems for so long that I hope and pray this will allow you to have a better quality of life. You give me hope that anything can be handled if a person has the right attitude.
Take good care of yourself.
Sincerely
Joyce

[Toogoofy317]

Thanks Joyce,

It has been another long frustrating week. I had been feeling pretty good and a friend of mine needed some help with the creating of her Art Studio in the garage. I was only supposed to be there for moral support but, since I was feeling good decided to jump in and help. I acutally did great most of the day then about 9 that night I hit a wall. I did everything I was supposed too took breaks, downed tons of water and gator aid, took turns supervising. but it was no good, was bending over and got bad palpitations, extremly dizzy, and the chest pain started. I immediatly quit was hot and nasty jumped in the shower hoping it would help. It didn't I walked out of the shower and passed out on their love sac (brand of bean bag!). Came too a few minutes later with excruciating pain and had to be taken to the ER where I've spent the last week. The cardios that I've never even seen agreed that getting assessed for a transplant would be a good idea. I just don't know why the local guys are dragging their feet! What is it going to cost them if I go?

OH, well

Mary S.

[Joyce Leinart]

Mary, Mary, Mary,
What in the world are we going to do with you :roll: . You did do everything right except remember your tired heart doesn't want you to go out and try to put together an Art Studio. Just take it easy for a while.
OK?

[shirleymahoney]

Mary

Keep your chin up girl, you just need to find the right doctors and i do believe your transplant encounter with these bad doctors will be over and if i were you maybe ask Dr. Maron who you should see maybe he knows someone in Florida Take Care

Shirley

[angall]

Hi Mary
Please try and remember you can't do the things you liked to do in the past. Take it easy. Your time will come for a new heart.

You are always in my prayers.

[Toogoofy317]

Well,

Got a call from my local guys today. Mainly it was to tell me about my AICD replacement date. But, she also casually slipped in that she was working on my referral to UF. I'm guessing they finally got to talk with Maron and he convinced them to let me go for the assessment. But, I won't believe it until I see the referal myself.

Been feeling better. Have had to ride my bike around to get things done. My car is finally in the shop and will be there for a week and a half! Man, does this hummidity and heat SUCK!

Mary S.

[NoCrash]

Mary,

That's some good news about the referral being in process, but in the meantime WHAT ARE YOU DOING RIDING A BIKE!!!!! IN THE SUMMER!!! IN FLORIDA!!!!

Rob

[Toogoofy317]

Well,

When you have no car and no money you do what you have to do!


Mary S

[LizCarpenter]

My name is Liz and I was transplanted almost 1 year ago!!! I was just wondering... are you on a list as of NOW? if yes... where?
Bike riding... that is soooo dangerous! Please check on that car ASAP!

[michael obrien]

:D hi Mary,I dont know how you are riding around in florida on a bicycle,hopefully its mostly at night.Ican definitely relate to "doing what you have to do".I also hope your car comes out of he shop quickly.take care mike

[Toogoofy317]

Oh yeah I got my car back! By a few acts of G-D I believe! I've still not recovered completly from not having the car though. When I went back to work my roommate loaned me this godforsaken car. I remember the last day I drove it one of the thermometers on 192 said 109 degrees! My pants were soaked in sweat.

I still do not know what to do about my BP. Just yesterday I was trying to work on my car (putting in a subwoofer) and I passed out. Then yesterday at work I was getting all kinds of palpitations and dizziness. Enough that the charge nurse sent me down to the ER but they sent me home three hours later. I almost passed out a couple of times today. Once, at the courthouse (will be another topic a horrible experience) and again at work. My BP has been staying aroun 80/50 and I can't do anything to get higher!

I did get a cal the other day from the insurance company saying that the eval had been approved for UF, So, now I get to wait for them. My AICD implant is scheduled for Sept 9.

On a positive note I have almost made it through my three week goal of staying back at work! Only one more day to go. But, since my hours are low I'm going to try and work as long as possible. With my wages I only have to average two hours a day to equal what SSI would give me! Is it just me or is there something wrong with that picture?

Mary S