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Blessed
Member
Username: Saints9

Post Number: 10
Registered: 08-2011
Posted on Wednesday, May 23, 2012 - 06:43 pm:   Edit Post Delete Post Print Post

Hi everyone, next week will be my first year anniversary of my liver transplant. I had NASH with hepatopluminary syndrome. Aside from having to have 2 stents my recovery has been good. I have had perfect labs for the past 6 mos. I have them drawn every 3 weeks. Even though I am doing really great, the fear of bad results still causes a lot of anxiety. My coordinator told me after transplant that rejection at some point is almost a certainty. Need some advice if anybody experiences this and how you deal with it.
Joe Berry
Forum Leader
Username: Joe910

Post Number: 321
Registered: 08-2008
Posted on Wednesday, May 23, 2012 - 08:20 pm:   Edit Post Delete Post Print Post

Congrats on your first liverversary. I too am a liver transplant patient and a little over 4.5 years.

During my pre-transplant clinic visit I asked about rejection. The surgeon who was answering the question made a lasting impression. He said exactly what your transplant coordinator said, that rejection at some point will likely happen, He went on to say what I remember most. With today;s anti-rejection meds and our history of treating rejection it is almost a non-event. It may cause a few days of discomfort and possibly a hospital stay, but we've not lost a patient to rejection and we don't plan to start with you.

For me, I always go back to that whenever I start thinking negatively. Also, the more months where your labs are perfect helps bolster your confidence. I am fortunate to be friends with three other liver transplant patients. We all were transplanted within six months of one another. Thankfully none of us has had any rejection events.
Joe Berry, Peoria, IL USA
Forum Leader
Diagnosed with PSC and UC in 1990
Liver Transplant 10-17-2007
Northwestern Memorial, Chicago, IL
Joe Berry's Helpful Healthcare Hints
blog on TransplantBuddies
Tony
Member
Username: Tony

Post Number: 48
Registered: 07-2003
Posted on Wednesday, May 23, 2012 - 11:38 pm:   Edit Post Delete Post Print Post

.
Hey Blessed

CONGRATULATIONS ON YOUR FIRST TRANSPLANT BIRTHDAY!!!!!!

I had my first rejection episode very early on after my liver transplant it was within months of my surgery. when i asked the doctors about them they told me that it happens often but they didn't explain how or why. they just kept me in the hospital a little longer to monitor my test results.
and it's like Joe Berry says with the new medicines and constant monitoring of your system you should do good. That was my only rejection episode in fifteen years

tony
A Valentines Liver
2/14/97
at Massachusetts General Hospital
Joan
Member
Username: Coco1999

Post Number: 154
Registered: 08-2008
Posted on Thursday, May 24, 2012 - 07:49 am:   Edit Post Delete Post Print Post

I used to worry it a lot. I had many bad dreams about it. But right now, I try to focus on what I can do and do it right such as having healthy diets, exercising, and taking good care of myself.

Good luck and best wishes,


Joan
Kidney Tx - Aug. 2001
Terri
Member
Username: Terri

Post Number: 266
Registered: 09-2007
Posted on Thursday, May 24, 2012 - 01:57 pm:   Edit Post Delete Post Print Post

I never had a fear of rejection right after my transplant...I went two years before having my first one. It was mild so I didnt have any symptoms, it showed up in labs. I was scared then but after a round . of Prednisone, it was gone and all good. Two years later, had another one, did same thing. After that I never had anymore problems. My numbers were perfect for many years. Three years ago, my numbers went up, stayed there. It went on long enough that I started worrying wondering if this was the beginning of something worse happening.

I was put on Prograf a year ago and my liver numbers returned to normal and have stayed there except for when I was bad sick this past February. My creatinine has been going up and down for the last three years; since January, it has gone up and hasn't come back down.

I have learned through this that worrying doesn't do anything to the numbers, you can worry all day long, they don't go down. All I can do is keep taking my meds and leave it in God and my doctor's hands.
Terri Lynne - 20 Year Liver Transplant Survivor
"Whatever doesn't kill me had better start running!"
papillonbleu
Forum Leader
Username: Papillonbleu

Post Number: 2233
Registered: 10-2007
Posted on Monday, May 28, 2012 - 07:50 am:   Edit Post Delete Post Print Post

I tend to be a worrier in general, so I have sometimes worried about possible rejection especially because I received so many organs. However, it has helped that over time I have only had a few mild rejection episodes that only required closer monitoring and otherwise have had good labs for about six and a half years. It helps me too not to deny that I have these fears but to find a more constructive way of dealing with them such as using them to fuel an art project, making music, a walk, writing something to others or for oneself, supporting a cause, making a positive change in one's health habits, etc. My faith in God helps as well. I find it also helps to stay connected to others so that I do not feel alone and thus withdraw more where it is easier for me to worry more and more. Best of wishes and many hugs.
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

ono
Member
Username: Ono

Post Number: 167
Registered: 06-2009
Posted on Saturday, June 02, 2012 - 07:39 pm:   Edit Post Delete Post Print Post

Like you, I had stents during the first year. At three years out and no rejection episodes, I can tell you that I never feared rejection. If I had one early on, I might not feel the same.

Probably like many things, it depends somewhat on who you are and how you feel about life in general.

I hope you can find a way to calm your mind and replace your fear with contentment.
health journey
Member
Username: Health_journey

Post Number: 60
Registered: 04-2011
Posted on Monday, June 04, 2012 - 05:33 pm:   Edit Post Delete Post Print Post

I really don't think about it. It's a negative thought that may never happen. If it does, I will deal with it.

I am so grateful and happy and feel so much better that I focus on those good things. Every time I do something that I couldn't do for so long before the transplant, I just smile and give thanks to my donor.
Liver Transplant 10/25/2009
UMDNJ
health journey
Member
Username: Health_journey

Post Number: 62
Registered: 04-2011
Posted on Monday, June 04, 2012 - 05:45 pm:   Edit Post Delete Post Print Post

BTW, before surgery I couldn't walk 15 steps without needing a rest. Couldn't climb stairs. Could hardly breathe if I did.. Everything was a major effort. I am now walking a mile a day in a park and doing Zumba exercise classes 2x week. Life is so normal, I guess I am still on a high 2 1/2 yrs post surgery. Life is good.

Blessed,..... maybe as time goes on you will feel more confidence and feel less fear. I get motivated when I read forums like this one and people who are 20 yrs + and post how good they are doing. I am excepting a normal life span and my doctor agrees.
Liver Transplant 10/25/2009
UMDNJ
Blessed
Member
Username: Saints9

Post Number: 14
Registered: 08-2011
Posted on Tuesday, June 05, 2012 - 07:59 pm:   Edit Post Delete Post Print Post

Thanks everyone for your post. I too could hardly breath before tx I was on oxygen 24/7. Sometimes I think I would like to forget the whole ordeal but then I could not appreciate how blessed I am now. I used to never go to the doctor before tx, now I feel like I'm a hypochondriac!! Anyway I've decided to go back to work FT. I can't go through life waiting for bad labs that may never occur. Will let ya know the results of todays. Should be ok just like the past months have been.
Swedish Mouse
Member
Username: Swedish_mouse

Post Number: 5
Registered: 06-2012
Posted on Monday, June 11, 2012 - 06:54 am:   Edit Post Delete Post Print Post

I had quite a few bouts of rejection early after my transplant which was treated by iv prednisilone, and prolonged my discharge (I was in for 6 weeks in total). My consultant said it's pretty common for women of my age. I think because I had it so early on, (and a failed first transplant), I understand its not such a big deal and easily treatable (although I did cry at the time). I haven't had any since discharge and have stopped worrying about it after my first few clinics post discharge were good.
God Bless my Donors <3
Peggy N.
Member
Username: Peggy

Post Number: 1
Registered: 06-2012
Posted on Wednesday, June 20, 2012 - 05:33 pm:   Edit Post Delete Post Print Post

Am new to the forum. Liver transplant 2 1/2 yrs. Have not felt good since. Trying to work full-time, live alone (well,not quite alone - 2 big dogs and 2 cats!). Have a hard time eating (lost 30 pounds), nausea and vomiting, cold sweats almost constantly and unbelievable fatigue. Can sleep 20 hours with no problem. Also eyesight problems. Coordinator at UCLA doesn't have any opinion. Have seen several different types of doctors with no changes. Lab numbers are ok, liver enzymes a little high, but they say that's normal with HCV. Except prograff level- that goes way up and then way down. The last year they have been adjusting the doses from 4mg/day down to 1 1/2/day and back and forth. Any thoughts would be greatly appreciated!
ono
Member
Username: Ono

Post Number: 170
Registered: 06-2009
Posted on Wednesday, June 20, 2012 - 07:21 pm:   Edit Post Delete Post Print Post

You mention hep C.
Have you had a recent biopsy ?
Hep C can be very invasive post transplant.

My tp was in April 2009. After a biopsy last summer that showed fibrosis bridging from stage 1 to stage 2, my hepatologist suggested I begin interferon treatment.
I did over the winter and now am finally hep C free.

Your coordinator is not a hepatologist. That's who you should address your questions to.
Please let us know how things go.

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