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2-3 Months Post Transplant - How were you feeling?

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Posted 6/10/2014 1:43 AM (GMT 0)
Hello,

This is RKayne's wife posting. I had my transplant on April 3rd, so I am about 9 weeks post-op. Last I met with my doctors, they were very pleased with my progress and recovery - said that my new liver is functioning "excellently" and my kidneys are functioning "in the normal range."

Maybe I'm being unrealistic in what I should be able to do at this point in my healing. I am capable of many basic household chores - (no vacuuming or doing anything that requires heavy lifting or repeated or prolonged bending over,) I have been cleared to ride the bus again as of about 2.5 weeks ago, so I can go now to my doc appointments and such all by myself now. I am capable of walking short distances (I'd say 1/2 mile is my upper limit right now in one jaunt.) Which all sounds great when I write it down, BUT I get tired so easily still, I am so sore, my belly is still round (thank goodness all the fluid and swelling has totally gone away, that happened completely around week 4) and is weak. I know the docs said that because of the cutting they did, my insides being held together by permanent sutures, and my abdominal muscles being separated due to the months of EXTREME ascites I had, that it would take a while for that to heal. How long is a while??

Mostly, and I know everyone is different in so many ways, I'd love to get an idea of how anyone else out there was feeling/functioning at 2-3 months post liver transplant?

Thank you,
Shannon
Posted 6/10/2014 2:21 AM (GMT 0)
Shannon,

Mike is 3 years post TP, and recently treated for chronic Hep C. He is starting to feel better.

He is still "round." Though he had a huge incisional hernia about a year or so out and they had to reopen about half way up each side of his Lexus scar, put in mesh, and resuture the same old place! It is not so red anymore, and seems to have done the trick, but recurrance of incisional scars is not unusual once you have had one....so NO lifting. Let her carry the suitcases and groceries for a while longer.

Mike is still napping most mid days. He tires easily, but not as easily as at first. I would say it was a year before he didn't feel all post op-ish.

The recurrance of the Hep C leaves me with an inabilty to really say, but once the Hep C was clear his mental status really came back fast. So I am assuming if you don't have that you should be getting clearer mentally every day.

Getting into an exercise program under your doctor's recommendation would be a great idea. But get this...Mike is now stationery biking 15 or 20 minutes without having shortness of breath. 3 years out.

Others have come back more quickly.

I'm sure they'll pop it.

OH, and I'm thrilled YOU are posting yourself.

Welcome Shannon, don't be a stranger.

Hugs,
Mama Lama aka Carol
Posted 6/10/2014 2:48 AM (GMT 0)
I'm thinking more about this. I think by 2nd and 3rd month he was still needing to rest after his shower. He was NOT walking a half mile. I think for as sick as you were you are doing really really well. Hugs, ML
Posted 6/10/2014 3:01 AM (GMT 0)
I'm almost 5 years out from my transplant. You need to keep walking, but don't overdo things. Be very careful about lifting things. I did all the right things and ended up with an incisional hernia at a year. You went through one of the most difficult operations imaginable, it takes a while to recover. I have done very well and wasn't really recovered until the end of the second year. Even then, I'm still improving.
Posted 6/10/2014 3:03 AM (GMT 0)
Hi Shannon, Welcome!

We have a lot of post transplant folks that will post and answer your questions. I am jumping in here to meet you, even though I can't answer your questions as this is a good topic for me. I am themiz, and my husband has been on the transplant list nearly a year. We are patiently waiting ; ) Actually, I think you are doing amazing considering how very sick you were.

If you don't mind, can you tell us about your meds at this point? So happy to have you here with us. Honestly. Big Hugs
Posted 6/10/2014 4:14 AM (GMT 0)
Thank you all! I do my very best to follow my doctors instructions precisely. That means if I am tired or feel like I'm over-doing things, I stop and rest or nap. My doctors keep saying that I'm "doing great" especially considering how very sick I was (they are a major hospital and had NEVER seen a MELD score so high....I basically shouldn't have been alive, but stubborn me just kept holding on and hoping for a new liver.) It is so wonderful to get feedback, though, from people or loved ones who've actually been through this themselves.

Thank you, and I look forward to hearing more.
Shannon
Posted 6/10/2014 4:38 AM (GMT 0)
about my current meds:

There have been lots of changes, stops, and new Rx's, but this is my current cocktail:

Tacrolimus (Prograf) 2.5mg - 2X a day
Myfortic (Mycophenolate) 180mg - 2X a day
Omeprazole (Prilosec) - 1X a day
Bactrim SS (Sulfamethoxazole) 400/80 (??) - 1X a day
Valcyte (Valganciclovir) - currently on hold
Fluconazole (Diflucan) 200mg - 1X a day
Fludricortisone 0.1 mg - 1X a day
Calcium Acetate (Phoslo) - 667mg 3X a day
Magnesium Oxide - 400mg 2X a day
Colace as needed
Vitamin D (Ergocalciferol)50,000 units 2X a week

As you can tell, in addition to my liver team and PCP, I am also under the care of a renal doctor. My kidneys were so shot due to their struggling to do the job of my non-functioning liver that they were not sure at the time of transplant if they were going to recover after I had a healthy, functioning liver. As no kidney was available and I needed that liver that became available (I would have died within 48 hours maximum without it) I naturally agreed to hope for the best for my kidneys with the backup plan being, if they didn't recover, to go on dialysis (I had been having it the last few weeks before I got my liver) and heal and then do a kidney transplant. I am a lucky lady and have plucky little kidneys! They are doing fine now, although I keep hanging on to potassium and have to be careful about that.

Thanks,
Shannon
Posted 6/10/2014 6:50 PM (GMT 0)
Shannon, Thanks for your postings. I know you are here for you..but you post transplant folks really help those of us on the pre-transplant side of life.

I was terrified of Hep C and treatments, until themister got through those things. Then we moved rapidly into ESLD and a TIPS procedure. And ESLD with the HE was just a mess the first year after TIPS.

So unlike the past....we are working on being proactive in advance of transplant. Knowledge is power, and all that stuff. I am not very concerned about this process seeing so many dying basically....to be transplanted and on with the rest of their lives.

I did not think you would make it, and you have no idea how happy I am that you are here, posting, having plucky little kidneys, and walking a whole, half mile! This is miraculous stuff. Big Hugs
Posted 6/10/2014 11:26 PM (GMT 0)
I am more than happy to offer support and just share my experience. A lot of technical questions about my treatment pre-transplant (from December 2013 till transplant) are somewhat murky to me, not to mention the many times that I was simply not mentally "there" and either have no memory or remember the hallucinations I was having rather than real events - luckily I can refer to my wife about things I need the blank filled in - she, of course, remembers everything in great detail. My MELD score was so high, when I was transferred to the hospital that actually performed my transplant, that they couldn't really calculate it, so just put it down as 50.

I wish your husband and yourself blessings and luck (it takes both to get a new liver in my experience) - I know all too well what living with ESLD is like and although this recovery is long and arduous, I do feel so much better than before and am thankful every day for the little, tiny improvements I see and feel. I am just impatient and want to be able to do "All The Things" right NOW.

XOXO,
Shannon

XOXO,
Shannon
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