| Author |
Message |
Tim
Member
Username: Timt
Post Number: 7
Registered: 05-2013
| | Posted on Thursday, June 20, 2013 - 10:10 am: | 
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Yesterday, I got the word that as soon as I complete the 2-hour class next Monday on post-transplant facts, and get a small administrative chore done, I'm on the List.
I'll go on as a 2 and we'll monitor things as my cardiopathy gets worse. It could be quite a while, but it looks like I'll be ready to go when (if) my illness gets bad enough and a heart is available.
Family's been asking how I feel about it, and I frankly can't come up with a simple answer.
It's certainly a relief, but there are still so many variables and uncertainties, I don't know whether to laugh or cuss.
At least I can still eat sushi and rare steak for a while. |
Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 584
Registered: 12-2009
| | Posted on Thursday, June 20, 2013 - 11:54 am: |
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Good morning Tim,
Congratulations on getting listed, where will you be having this done, what is your condition (cause for transplant)?
Best wishes for a short wait and speedy recovery
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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ajs
Forum Leader
Username: Ajs
Post Number: 778
Registered: 03-2008
| | Posted on Thursday, June 20, 2013 - 05:20 pm: |
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It's a good thing, Tim. You will get your life back, and after a year or so, the restrictions ease. Don't know about sushi, cause I don't eat it anyway! Congrats.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17755
Registered: 05-2003
| | Posted on Thursday, June 20, 2013 - 05:31 pm: |
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Wishing you the best Tim
with your upcoming transplant.
Be careful with the rare steak and sushi is probably a no no post transplant or at least I stopped with the sushi.
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Tamara
Member
Username: Heppygirl
Post Number: 106
Registered: 05-2011
| | Posted on Friday, June 21, 2013 - 04:00 am: |
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Wishing you also the best, hopefully your heart will come soon.
Before transplant I ate everything, rare steak, sushi etc. But after I became more careful so no sushi anymore althought I know LOTS of friends of mine who also had a transplant still eat sushi... And still alive haha ;) But I'm just scared, don't want any food poisoning..
Tamara
26y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 542
Registered: 01-2007
| | Posted on Friday, June 21, 2013 - 06:58 am: |
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We know that not all transplant centers have the same recommendations for their patients when it comes to do's and don'ts on food safety.
The USDA Food Safety and Inspection Service (FSIS), along with the FDA have prepared a very nice brochure entitled 'Food Safety for Transplant Recipients".
Here you can read recommendations for immunocompromised individuals that are not dependant on rumour, word of mouth, or individual opinions. See the recommendations and risks for eating undercooked foods, such as sushi, soft cheeses, steak tartare, or sunny-side up eggs, along with many useful tips.
It's up to the individual to select lower risk options or throw caution to the wind, but this booklet can help you make an informed decision.
http://www.fda.gov/Food/FoodborneIllnessContaminants/PeopleAtRisk/ucm312570.htm
More at-risk populations:
http://www.fsis.usda.gov/wps/portal/fsis/topics/food-safety-education/get-answers/food-safety-fact-sheets/at-risk-populations#.UcQ7LJykpuA
More on food safety including recalls, etc.
http://www.foodsafety.gov/
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Tim
Member
Username: Timt
Post Number: 8
Registered: 05-2013
| | Posted on Friday, June 21, 2013 - 10:42 am: |
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Jay:
Thanks for the URL to the FDA brochure. I bookmarked it and will no doubt use it a lot.
Jack:
I'm working with OHSU in Portland, OR. All my experiences with them have been excellent. They are a caring and rational bunch, and very personable, to boot.
Everyone:
Thank you all for the good wishes. It's likely I'll have to wait longer than average to get the heart.
I have hypertrophic cardiomyopathy, which makes my heart lousy at refilling between pumps, so I get real weak and winded very easily. The condition gets continually worse, so I may have to wait until I'm in pretty bad shape before they allocate a heart for me. But they do understand that the worse I get, the harder and less likely it'll be to recover. This all adds up to "Nobody has a clue when it will happen."
So for now, I'll stoke up on the rare steak, over-easy eggs, and occasional sushi til the bell rings. Then it'll be time to look elsewhere for fun.
I already got a long list of projects and pleasures that have been impossible for too long.
Thanks again for your wishes.
Tim |
papillonbleu
Forum Leader
Username: Papillonbleu
Post Number: 2243
Registered: 10-2007
| | Posted on Sunday, June 23, 2013 - 07:36 am: |
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Congratulations on making it on the list! I hope that you will not have to wait really long and that you will also be prepared as possible whenever the time comes. I am glad that you found this forum as the community here is very friendly and has been a great blessing to me, and I hope you may find the same to be true for you. I will keep you in my thoughts and prayers. Many hugs.
Warm regards,
Bobbiejo
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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DAP1122
Forum Leader
Username: Dap1122
Post Number: 3454
Registered: 05-2008
| | Posted on Monday, June 24, 2013 - 06:36 am: |
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Tim, Congrats on that HUGE step .... being listed. May your wait be short!
~ DAP
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Tim
Member
Username: Timt
Post Number: 9
Registered: 05-2013
| | Posted on Saturday, June 29, 2013 - 03:27 pm: |
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I'm looking into building a temporary, collapsible shower out of PVC pipe on our first floor. Won't be able to go upstairs for a couple of weeks, I'm told.
Hope it comes during warm weather.
Tim |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 17774
Registered: 05-2003
| | Posted on Saturday, June 29, 2013 - 03:55 pm: |
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Hi Tim
Before you buy the PVC make sure that this PVC does not off-gas, you certainly do not need to be exposed to chemicals.
Is it true that all people after heart transplant cannot walk up stairs?
You can always sponge bathe.
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Russ
Member
Username: Rjwitte
Post Number: 151
Registered: 06-2009
| | Posted on Saturday, June 29, 2013 - 04:40 pm: |
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Tim,
That may be overkill. They wouldn't let me out of the hospital without doing a couple of flights of stairs. Honestly, you're replacing a heart that isn't working with one that does. I felt great pretty quick after the transplant. I remember waking up and realizing that my feet were warm for the first time in months (this was the middle of winter). I did a 5k 4 months after transplant. They won't allow you to go upstairs? That's almost opposite from the advice they gave me. They wanted me to exercise as 'tolerated.'
Russ
Russ - Heart Txp, 1-1-1999
Univ. of Michigan |
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Tim
Member
Username: Timt
Post Number: 10
Registered: 05-2013
| | Posted on Tuesday, July 02, 2013 - 02:03 am: |
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Russ
What you say makes sense.
I just got done with the month of pre-listing tests and then did a 3-hour class in post-plant care and procedures etc. So i don't recall just who said that , when.
You can bet I'm calling first thing tomorrow morning to find out what's what with that.
Thanks very much for the second opinion.
Where did you get your transplant done? Mine will be in Portland at OHSU.
Tim |
Tim
Member
Username: Timt
Post Number: 11
Registered: 05-2013
| | Posted on Friday, July 05, 2013 - 09:31 am: |
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Good news here (of a minor sort).
After reading Russ's comment, I got in touch with the folks at OHSU and asked if I really would need to stay away from stairs post-plant.
Three different people said there was no reason to do that, and no one admitted to telling us that I'd have to stay on one floor.
Both my wife and I remember SOMEONE saying that, but we can't sort out who it was.
But apparently I don't have to worry about it after all.
Thanks Russ. you saved me some hassle and money.
Tim |
Tim
Member
Username: Secondchance
Post Number: 2
Registered: 07-2013
| | Posted on Friday, July 05, 2013 - 11:34 am: |
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Good news man. I'm starting my pre-work up shortly to go on the list for my second transplant. You'll kick it's but and get a pair soon  |
Tim
Member
Username: Secondchance
Post Number: 3
Registered: 07-2013
| | Posted on Friday, July 05, 2013 - 11:37 am: |
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Good news man. I'm starting my pre-work up shortly to go on the list for my second transplant. You'll kick it's but and get a pair soon |
NancyJ
Member
Username: Nancyj
Post Number: 3
Registered: 05-2013
| | Posted on Friday, July 05, 2013 - 08:31 pm: |
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Hi All! I, too, am on 'the list'. I have been waiting since December 21, 2012. I have to admit that waiting is the hardest part. I find that my faith and my positive attitude is keeping me going. I have started to make plans for after surgery and I am planning a trip to Italy on my 1-year anniversary. For those of you that are still waiting I say, "have faith, pray and surround yourself with positivity and positive people." My doctors can not understand how I am still functioning when my heart pressures are below 20. I know why. I am totally trusting Him and I have been praying for my donor and their family. I hope that this message can encourage and help some one through this time.
Stay Positive,
Nancy |
ToddnLisa
Member
Username: Ainskyle
Post Number: 1
Registered: 05-2011
| | Posted on Thursday, July 11, 2013 - 06:52 pm: |
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Two years ago, my husband received a kidney and heart xplant at OHSU (surgeries 15 hours apart and from the same donor) and was walking up a flight of stairs 2 1/2 weeks post transplant. He was very weak prior. OHSU ROCKS!!! |
ToddnLisa
Member
Username: Ainskyle
Post Number: 2
Registered: 05-2011
| | Posted on Thursday, July 11, 2013 - 06:56 pm: |
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Two years ago, my husband received a kidney and heart xplant at OHSU (surgeries 15 hours apart and from the same donor) and was walking up a flight of stairs 2 1/2 weeks post transplant. He was very weak prior. OHSU ROCKS!!! |
Hitchhiker
Member
Username: Hitchhiker
Post Number: 3
Registered: 08-2013
| | Posted on Wednesday, August 07, 2013 - 11:32 am: |
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Being on the list for me was the hardest part to deal with. It's good news no doubt but it wasn't a relief to me.
The relief for me came when they came to give me the knock out drugs for my surgery. Now that was a happy moment.
I was also required to do a flight of stairs before being released, they really kick you out quickly so you don't get sick from the other people in the hospital. |
Hitchhiker
Member
Username: Hitchhiker
Post Number: 4
Registered: 08-2013
| | Posted on Wednesday, August 07, 2013 - 11:34 am: |
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Being on the list for me was the hardest part to deal with. It's good news no doubt but it wasn't a relief to me.
The relief for me came when they came to give me the knock out drugs for my surgery. Now that was a happy moment.
I was also required to do a flight of stairs before being released, they really kick you out quickly so you don't get sick from the other people in the hospital. |
