Just starting transplant proceedure

[SteveArbo]

Hello all, I was just told yesturday that I'm starting the process for getting a heart transplant. I go in to have my pacer changed out for a ICD on june 7th and see the transplant Docs the following day. Kind of an overwellming turn of events.
I have Apical HCM that has thickened to the piont of needing a new heart and they want (idea I like very much) to put in ICD as safety net until I get the new pump. I've also been in cronic A-Fib for the last 3 years.
This is all so new and hard to wrap my brain around at the time. But, with that said I have always and will continue to have faith in God and plan to keep my positive attitude of this just being another step to better health.
I'm 47 and have always said that with modrn technology I will get healthier and healthier as time goes on:)
PS I've been absent from these boards for a long time, I has doning just fine you know. But, with this turn of events my first thought was to plug back into the support of this site with all the great people on it. Lisa, it's been a long time since we talked, but I sure would like a few minutes when you can. Have a great week, and just a big thanks for being here.
Steve, Washington State

[Reenie]

Hi Steve. I'm glad to hear you've got a plan, although I wish it was a simpler plan, to getting your health back. Where do you intend to have your treatments? In Washington?

Reenie

[Midge Rollins]

Steve, welcome to the board again. Your positive attitude will help you down this transplant road. I received my heart 2 years ago and have enjoyed living my live to the fullest since. If you have any questions let me know and maybe I can answer them. I always say the things that got me through it all is # 1 Faith, # 2 Family # 3 Friends. The initial shock of knowing this is what you need is tough. Testing is not bad, waiting is hard, post transplant is the easiest as all the other is behind you. I thank God daily for my new life and the wonderful gift that my donor gave me.

[Pam Alexson]

Steve,

I am glad you came back here. We will all try to give you all the support you wish at this difficult time and in the times to come. I am sorry that your heart has taken this turn . Your positive attitude is commendable and will surely be a very strong asset to you as you face so much and you will inspire others as well.

My best,

Pam

[SteveArbo]

Thanks for the warm welcome:) This next week is goingto be a busy one, but when I get back from ICD implant I'll touch base again. Maybe I'll know enough to ask questions by then, after talking to transplant docs.
Yes I will be treated in Spokane Washington. I have total confidance in my docs. I've heard that the trans docs here are super. And Midge, I feel from what you said I should do real well. I've got #1,#2,#3 covered, and on top of that you guys #4. I would really like to talk to you soon when I get back and healed up a little from this little ICD thing.
Thanks again all !!!!!!

[SteveArbo]

update, i'm not going home soon. the doc's say i'll be here until transplant. i wasn't expecting that. just finished up icd implant and most of the transplant testing. i get my unos ranking on thursday, that is what i'm being told for now. i have the rare apical hcm and my left ventricle volume is very low. they are afraid it will colaps. this group has transplanted 3 people with this same apical variant with great sucsess. i plan to be the next sucsess for them with this varient.

[karen cicconetti]

Dear Steve

I had my transplant over 8 years ago. I waited in the hospital to. Alot of people are at the HCMA meeting this weekend so if you don't here from some of them for awhile thats why. I'll be home tonight. If I can help you in any way let me know.

Karen

[Reenie]

Please keep us posted on your progress. I hope you get your new heart really soon.

Reenie

[shirleymahoney]

I just wanted to wish you all the luck, I hope your family can keep us informed on how you are doing

Shirley

[Debbie]

Steve,

My best to you! Hope all goes well!

Debbie

[Midge Rollins]

Steve, as Karen said there was a lot of us at the HCM annual meeting. I am glad you are in a safe place and as scarry as being admitted right away that does place you on a higher ranking for a transplant. Best of luck and please feel free to contact me at any time. I will keep you in my prayers.

[Pam Alexson]

Steve,

Keeping you in thought and prayer . We are all hear for you.

Pam

[delfam]

Steve,

Good luck and keep us informed:)

[SteveArbo]

I got all the results in from testing and everything looks good. Type A blood which is very good right now in this region for transplants. I get the official UNOS ranking on Thursday. That's the next big step in betting this going. Thanks for all your well wishes and prayers.
Steve

[THW]

Steve,
Just wanted you to know you are in my thoughts. My sister just had a transplant on Monday, and she is doing well. She had been on the list for less than 8 weeks even though they estimated that she should expect to wait at least 14 months, so things can move rather quickly.
Blessings of hope to you,
Theresa

[Lisa Salberg]

Steve,
I missed your call before the meeting and now I do not know where to reach you. Can you PM me a number?
Best wishes and please know you are in our thoughts everyday!

Lisa

[tommysgirl]

Steve,

I know this must be overwhelming for you and your family. I'm glad that you are at the hospital, it's the safest place for you at this time. I hope your time waiting for your new heart goes by fast. We will keep your family in our thoughts and prayers.

God Bless!
Sherry

[SteveArbo]

Thanks again for your support. I did get placed on the UNOS list on the 16th. I'm #1 on the list with my blood type. So, I'm doing the waiting thing, with hopes of relief soon. In God's time it will all work out just perfect. They treat me like Gold here and I have complete faith that I'm in good hands all the way from God to the staff here. My wfe is being a tuff trooper, or at least trying her best to be. How nice to have my best friend/wife to share this experience with. This has been and will be the most positive thing that has ever happened to me in my life. I can't wait to be on the other side of this experience.
God bless you all in health and happiness.

[LindaG]

Your message and story really touched my heart. I am very happy for you. I wish my son would have been lucky enough to have a doctor who realized that he needed a heart. But, I guess that was not in the "grand scheme of things." But, your transplant IS...and it will be successful...and you and your wife will have a wonderful life together.
Bless you both. I'm confident we'll hear some very good news shortly.
Linda

[SteveArbo]

Hi all,
Time to check in I wreck'n. I want to start by thanking you all for your support, it's sure nice. I'm still waiting for that perfect heart. Had a close call last night, but Texas took it. That just wasn't the right one for me, I'm holding out for the good stuff ya know. Anyway, my family and I are doing pretty well. It's definatly a stresser on all of them too. I'm going through the roller coaster of emotions with all this, but that's normal and to be expected. So, all's good on this end. I've got my original birthday coming up on 7/11, but I'm really looking forward to that new Birthday!!!
Take care all and God Bless.

[Linda]

Steve, thanks for the update. Happy BD and here's hoping the new BD is close at hand. Once again, thank you to all those families who are so generous as to become organ donors. Best wishes, Linda

[Pam Alexson]

Steve,

Hang in there that new birthday is coming . We here at the HCMA will surely ride an emotional roller coaster for you too as we wait patiently for the updates of how you are doing, going through these times. Please know you and your family are in our thoughts and prayers.

Pam

[tommysgirl]

Happy Birthday! We will be riding along side you. You have a great attitude and yes, God is good! He will bring you that special heart that he has chosen just for you. We get impatient waiting on him at times. He just has to make things happen at the right time. We will continue to pray for you and for all of those donor families out there as well. May God carry your family through the waiting period.

I'm praying for your donor family now as I have walked in their shoes and figure a little early prayer for them will be good. Take care and take one day at a time.

God Bless!
Sherry

[SteveArbo]

Sherry, First of all thanks for the kind words. You touch on something that has been heavy on my mind through all of this. I find myself too praying for the donor family that doesn't even know what's coming. I know that when the time comes, I hope they feel they're forfilling the wish of the to be donor, but I sure have a hard time in my mind with this.
I hope and pray that God gives these familes a special moment of comfort and peace.
Steve

[THW]

Oh Steve, unless you've been through this, it's hard to really understand how difficult this has to be. You have such a great attitude, and my heart goes out to you. My hope and prayer for you is that you are able to look forward with peace, and that God will help to alleviate your anxieties. Please know that you are being lifted up in prayer. And my prayer for the donor family is that they are able to feel comforted somewhat by knowing that they are giving the most undescribable gift. You are already a gift, but soon you will be healthier and free-er.
Keep believing,
Theresa
P.S. Thanks for checking in and I hope your family is able to log in here when that time comes so that we are able to surround you all with prayer, support, and positive vibes!

[tommysgirl]

Steve,

From my first hand experience of donating my first husbands organs, I can reassure you. It is very difficult to get the word that your loved one is no longer here. Yet, when you know that he or she wanted to be a donor, it is a bit of a relief to know that part of them lives on. There are many emotions for both the donor and recipients and their families. I know several donor families and ultimately we are all very happy to know that our loved ones help others to continue to live and improve quality of life. We give a chance to other families to keep their loved ones with them longer, when we no longer have that option.

We have our roller coaster of emotions as everyone that experiences a loss does, but knowing people (like you) are no longer suffering is a GREAT joy to us. Have positive thoughts and keep your chin up! God is preparing a miracle for you to come about very soon.

God Bless!
Sherry

[Debbie]

Steve,

Bless you! I know that you have so much on your mind. I have experience with transplants through my mom. It was so a wonderful gift, and one that we received with the most thankful hearts.

I know that it's hard to reconcile being the recipient of an organ, donated because someone else lost their life. You need to remember that the donor or their family wished for their organs to be used, and that you are lucky enough to be on the receiving end. You, of course, would have had nothing to do with the person's death. Life moves in mysterious ways, and if you get the heart that is right for you, then it was definitely meant to be, wouldn't you say?

Good luck, and I'll keep watching!

Debbie

[angall]

Hi Steve

I pondered with the very same thought....someone has to pass on in order for me to live. After losing my son, I found this very hard to deal with until I talked to some very special people.

If someone decides to become a doner, they want to be able to help others even if it means when they are no longer physocally with us. Theefore, we are helping thrm fulfil their dream
Ireceived my new heart April 11, 2006 and although I don't know a thing about him/her I say a prayer of thank you evey day.

Waiting is very hard, but please know that the wait is worth the results.

[SteveArbo]

It's show time!! Looks like noon today, Sunday 16th. Please pray for my family, the doctors, me, and especially the donors family.
My wife will try to keep you all posted as she can.
God bless you all.
Steve

[tommysgirl]

Steve,
I hope this is it!! We are praying for all involved. Including the team that will care for you and make this happen. This will be the beginning to a new life for you and your loved ones.

My family is sending out special prayers of comfort for your donor family during this difficult time for them as well.

Keep your chin up and keep reaching for those stars! There are so many within your reach. Take care, keep strong, and have someone keep us updated.

Love and prayers!
Sherry & Tommy

[Midge Rollins]

How exciting!! I will pray for Steve and please remember his donor family as we know they are grieving but through their grief they chose to give others life. What heros they are.

[Abbygirl2]

Steve,
Wow, what an emotional rollercoaster you all must be going through right now. I hope this is the perfect heart for you, and that the surgery and recovery go without setbacks. You will all be with me today.

Will be watching and waiting for an update. My thoughts are also with the donor family as they grieve.
Pam

[karen cicconetti]

Good luck!! , and may God watch out for you , your family and the donor family.


Karen

[Linda]

Our prayers for all. We are anxiously waiting for updates - Linda

[THW]

Steve,
God Bless You and your family, my friend. We are keeping you all, the donor family, and medical team in prayer!
Theresa

[shirleymahoney]

Steve I hope things went well and you have your new heart, you and your family and the donor family are in my heart and prayers

Shirley

[tommysgirl]

Steve,

I hope that no news means good news. I pray that all went well and you are recovering from the surgery in a good progressive state. Many positive thoughts for you and your family are coming your way. We continue to lift you and the donor family up in prayer.

God Bless!
Sherry

[SteveArbo]

Hi all,
Quick note I'll catch up later. PRAISE GOD I'M ALIVE!!!!! and doing well. I may get out of hospital tomorrow.
Thank you all and God Bless you I will touch base soon.
God bless my donor and his family.
Steve

[Midge Rollins]

AWESOME I am so happy for you.

[Linda]

Steve - It's so good to hear from you! We'll watch for more info later - Best wishes - Linda

[Pam Alexson]

Wonderful news Steve! Keep us updated.

Pam

[Abbygirl2]

Steve,
Absolutely wonderful news. I am thrilled to hear that you are doing well. Rest up and fill us in when you are ready.

Take care,
Pam

[shirleymahoney]

Steve

I'm so happy for you, Please take care of yourself and that new heart and blessed prayers to you and the donor family

Shirley

[THW]

Steve,
That's awesome to hear! Knew you could do it! We'lll continue to keep you in prayer. Hang in there, and we'll await to hear more when you're up to it.
Theresa

[tommysgirl]

Way to go Steve! See I knew no news was good news. It's great to hear from you. I'm so happy for you and your family. I know this has been an emotional ride for you and I've been praying for you.

May your progress be a good one and we look forward to hearing more from you, when you are up to it. Many special thoughts, comfort and prayers to your donor family.

God Bless!
Sherry

[karen cicconetti]

Great to here from you!! Stay well and keep in touch.


Karen

[SteveArbo]

Hello all,
Well, it's been one week out of the hospital and WOW, "I feel good, da,da,da, so, good, ya, so good" (James Brown).
So far everthing has been text book perfect. I am truly blessed. I did need to have a pacemaker implanted a few days after heart transplant due to a slow heart rate, but that too has been a blessing because I'm not the theart rate raising meds many take. And now no rate issues.
I went yesterday and got my exercise clothes and shoes and will be ready to start cardiac rehab Monday. Let the new me begin!!!
I praise God for my life, for my sucsess to this point, for my supporters (you and a host of others) and lastly and most importantly for the donor and his family.
Live, Love and Laugh, Steve

PS Any of you familier with this process knows of all the "fun" follow-up care involved. But you know I just feel so priveledged to get to go throught it. Praise God!!!

[Midge Rollins]

Way to go Steve!!! Exercise is the most important think they have in their little black bags. Thanks to our Donors for giving people like Steve, Scott, Rob, Esther, Karen myself and all the others a second chance at life.

[Pam Alexson]

So happy to hear that you are doing well Steve! Keep on going in that direction and please keep us up on your wonderful journey.

Pam

[Laoshur]

So glad to hear such good news, Steve! I pray for you that the rest of the process will go as smoothly.

Rhoda

[SteveArbo]

I had a super Doc appt today. They released me to drive, which will be here tomorrow!!!!!!!!! Fellow SVTOA brothers are coming here to Spokane for a track day and bringing my new 06 GT Convertible to me. They also say I'm doing so good that I can go without my mask around people that aren't know to be sick, kinda like normal. I can't tell you how fricken excited I am.
Thanks for being a part of my friends and family group. You all have touched me and helped me more than you will ever know.
God bless you all

[THW]

God bless YOU, Steve. Congrats to you!
Theresa

[Reenie]

Congratulations!

Reenie

[Midge Rollins]

Thats great news sounds like you have had a great recovery!!

[Linda]

Wonderful, Steve! Enjoy - Best wishes for continued and uncomplicated recovery! Linda

[Burton Borrok]

Well, this may not be the place for this – but then again, maybe it is.

I have inscribed on my drivers license – Donor – and I encourage everybody to do the same. You have no idea how warming it is to have the hope that when my journey is finished I might still have the ability to help someone else to a fuller life – eyes for the blind, an organ that still works for somebody who desperately needs it, or even skin for a burn victim.

Just imagine when you face the man upstairs what it would be like to point and say, “For my last act on earth I helped a fellow human being.” That has got to count for something, and I think it will count for a great deal.

In the Jewish religion it is said that we were made in the image of G-d so the body should not be mutilated after death – but there is a much stronger stricture that life is to be preserved whenever and however possible. I hope my final blessing will be the ability to help somebody else to a better life. What could be greater then that?
Burt

[SteveArbo]

I agree 100% Burton. Please everyone that wants to be a donor, make sure and tell/talk to your family, friends or whomever may be asked the question when and if you become elegible to be an organ donor. If they don't know your wishes, it may not happen. The tranplant team won't be asking you!