Liver transplant - Let's support each other

@xplantsister Hi I welcome you to connect and I did contract CMV from my donor. Mine was not a liver but a heart so I may not know all treatment plans for that virus. As you may know following transplant we are put on Bactrium to help with fighting this type of virus. In my case shortly after the initial 6 months I was not detected but when they took me off is when it presented itself. So they put me back on Bactrium but a higher dose. It was double what I took just after transplant for 2 weeks. For me I guess I was lucky since I did not have any symptoms of CMV so I was on the bacterium , but it went away and I get tested every month but so far it has not returned. So I hope you too will have a speedy recovery with minor symptoms.
Have a blessed Day
Dana

Hi @xplantsister

I had my liver transplant five years ago. I had CMV twice; the first was two months after my transplant, and the second was four months later. The first time I was given Valgancyclovir in pill form and it seemed to recede. The second time I was hospitalized and given intravenous Gancyclovir for ten days followed by oral Valgancyclovir for three weeks at home. I am tested regularly but it has never recurred. At the time, my doctors reassured me that they had other medications they could use if the Valgancyclovir failed to work.

I recall being very tired and breathless but I was having difficulty with some of my meds at the time and my doctors were unsure what exactly was causing my symptoms; the meds or the CMV. In retrospect, the first year post transplant is hard for most people and equally hard for our carers but recovering from the CMV and the change in my meds was a turning point for me. Within a few weeks I was better than I had ever been and I now take only Adaport each day. So...take heart. I know it has probably been a long haul for you and your carer but, believe me, you are over the worst now.

Hi @wildcat, thank you for your reply - many aspects of your CMV story sound quite familiar. I am the worried caregiver and my brother is the one recovering from an early April 2020 liver transplant. Like you, the MDs are not sure if the CMV or the valganciclovir (oral - now that he's out of the hospital) and/or one of his other medications are causing some of his symptoms, including breathlessness, diarrhea and fatigue. After about 2 weeks anti-CMV treatment (7 days of IV in the hospital), the virus now is unmeasurable in his blood, but the MDs say it can continue to exist in other compartments in which it is more difficult to detect, such as the gut and, for example, cause diarrhea. Interesting story the MD told us that might be helpful for others: Another liver transplant patient cleared CMV in the blood but continued to have serious diarrhea. Turned out the virus was in her appendix and she improved as soon as they removed it (my brother no longer has his appendix, so not relevant to him). Everyone has such a journey after transplant. It is very helpful to receive the "take heart" message. I do hope we are over the worst!!

Hello everyone, My name is Brandon and I'm a 45 year old male who received a liver transplant in April 2020, so it has not even been 2 months since my transplant. I had some complications with my small colon and my bilirubin number is still high. The doctors are monitoring it and hopefully it will slowly but continuously come down. As I'm sure many are, I'm anxious to feel energetic and overall physically capable of doing normal activities again. I know that exercise plays a major part in the healing process and building stamina. I'm curious as to what types exercise are best and safest to attempt at this stage of my recovery. I know that walking is very important, and I have also tried to incorporate some light resistance bands to increase muscle mass in my arms. Any advice would be greatly appreciated.

I'm One Year out. The Resistance Bands are great. Just move up to the Dark Blue (higher resistance) band if possible. Walking is important, I started just circling inside the house. I also had in-home physical therapy, that was a tremendous help. Get in home one on one therapy - not one of those therapy mills. Work on your balance, this is where I needed the most help.

Hi Brandon! Congrats on a successful transplant. I had my liver transplanted 13 months ago and was told not to do any exercise for the first few months. I had to walk up and down stairs, which took a lot out of me—I was 39 and in really good health other than the whole acute liver failure, acute renal failure, and acute respiratory failure thing—but did help me re-gain strength and mobility. I also did a lot of PT at home (asked the hospital PT staff for tips before I was discharged), specifically to gain enough strength to sit up and stand up without rolling on my side or twisting and depending on my arms!

My point is: The strength will come back slowly but surely just by re-training your body to do everyday “normal” things. Or maybe you’ve already passed that hurdle (congrats if so!). I totally get the anxiousness, but you don’t want to push it.

Resistance bands are great but make sure your doctor agrees this soon post-surgery. Even if your staples are out, there are still a lot of internal stitches (and scar tissue), and the last thing you want is to rip those or—God forbid—get an incisional hernia. I hear those are painful 😬

Have you tried planks? Those worked wonders for initially rebuilding my overall and, most importantly, core strength. But ask your doctors first! 😁

Hi, @brantodd1 welcome to Connect.
Congratulations on your transplant. Isn’t it great being on this side of it?

I’m a bit over 3.5 years post liver transplant. I would definitely ask your transplant team if there are any types of exercises you should not pursue. I presume you are still having check-ups fairly frequently so you should ask at your next appointment. I know that when the incision was healed I could do water exercises, which at that time were my primary exercises.

Everybody and every transplant center is different which is why you need to direct this question to them. It may be a bit early for many exercises but there are some they will probably approve like walking and biking. After having PT I started at the gym doing the exercises I had done there. My PT was initially at home, a Medicare benefit, and then outpatient where I used a number of machines.

I’m sure with your attitude you will be back doing all types of things in no time. It really was not that long for me.
JK

Hi @xplantsister

You sent me a private message and I was happy to reply. Did you receive it? I just wanted to check that the information I gave to you was useful. I don't know how to send a private message hence this public one! I hope that's okay.

Are you keeping up with your routine transplant medical care?

I have safely traveled by car and had my annual checkup for my liver and kidney transplant. My original appointment that was set for late April was rescheduled for June. When it was confirmed that my June appointment was going to happen, I was not sure if I wanted to keep the appointment. Like many of you, I live at a distance from my transplant center. I was afraid of the travel, lodging, eating along the way.
Now, that I have the experience behind me, I am happy that I took advantage of the safe travel guidelines that Mayo has shared. My husband and I made the trip and were able to protect ourselves as we made the 750 mile trip.
The entire staff and patients at Mayo were exceptional in their adherence to safe protocol. I do have to admit, though, that I am happy to be back in my home, safe and secure. I am even happier that I had another thorough checkup for my beautiful transplant!
Safe Travel Tips - https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-safety-tips/

-Since we are practicing safe distancing, There is plenty of room for everybody. New Members Welcome.
Welcome back - @michaelswaim, @jerrynord, @tjgisewhite, @autoimmunecirr, @gphetteplace, @frmike, @jacinta, @jsw, @contentandwell, @benlam11, @brantodd1, @xplantsister, @wildcat, @des46893, @msgtrebholtz, @gaylea1, @joanaiken, @rowdyramsey, @stella25, @ca426, @jeanne5009, @jdlogan65, @jacqualin, @jolinda, @beckyy39, @jodeej, @racing212, @manuelhsilva, @brianna, @danab, @khh, @seahorstmayo, @suzeaz, @birdienanie, @biteme, @lisamb, @1bigblacksuv, and anyone that I missed.

How are you keeping up with your routine transplant medical care? Have you kept up with labs? Have you had a virtual visit? Have you had an in-person visit?

I had my 2 year checkup at Mayo,Rochester May 11,12. My husband and daughter were with. My daughter is my donor and needed to have labs done, too. We stayed at the Kahler close to the clinic and could walk to the clinic indoors. We brought most of our food with and our room had a mini kitchen. Mayo was taking every precaution to keep people safe. My new kidney is doing very well, but I’m showing signs of the BK virus. My Cellcept dose has been cut back and I’ve been having labs done every two weeks. I’m waiting to hear the results from last week’s labs.