Recent liver and kidney transplant: Worried about his recovery

@usgillettero1960, Welcome to Connect.
Your husband is not alone in having these symptoms after transplant surgery. I have shared some links at the end of this response where you can meet others who have shared their experiences.
My experience is: I received my simultaneous liver and kidney transplant in 2009, and I remember experiencing some of the same symptoms that your husband is experiencing. I do agree that it does take time to fully recover and heal from the surgery, but keep in mind that your husband is taking some very powerful medications. These will be adjusted according to the lab results of his seemingly endless blood tests. I was very ill during the months leading up to my transplant, and I was on dialysis. My body had a lot of catching-up to do along with healing from the surgery. I wonder of that is true for your husband.
After surgery, my sense of taste, which had been absent prior to transplant, actually returned and I remember that could only eats small amounts. My food choices changed, too, so some of my favorites had to be adjusted or deleted from my grocery list. For several months, I took a daily nap, which was helpful for me.

That was my experience and now to consider our husband's current situation. His doctor needs to know what you have mentioned here. He will be able to advise you about what is normal for your husband at this point in recovery. Have you discussed this with the doctor?

Related discussions:
- Loss of taste after liver transplant
https://connect.mayoclinic.org/discussion/loss-of-taste-after-liver-transplant/
- Side effects from meds after Kidney Transplant
https://connect.mayoclinic.org/discussion/side-effects-from-meds-after-kidney-transplant/
- Mood changes after transplant
https://connect.mayoclinic.org/discussion/mood-changes-after-transplant/
@usgillettero1960, I know that as patients, we don't want to feel like we are pestering our doctor. However, as a transpant recipient and caregiver spouse, We must keep in contact with our doctor/nurse because we are in a special category! Our transplant team wants to/needs to klnow what is happening when we return home.

Hang in there. I didn't have a kidney transplant along with my liver transplant back in 2005, but still it probably took nearly a year afterwards to really get back to a more normal life. My daughter came & helped me for about 4 months afterwards, which was great. She brought my 1 yr old grandson with her, which helped brighten things up and gave me a nudge to keep working towards a successful recovery. I lost quite a bit of weight after my transplant, which wasn't that bad actually because due to ascites that had grown so bad before my surgery, it was a welcome relief and also gave me a boost towards having some needed energy to help me get more active physically which was helpful, as well. My appetite wasn't great either, but as the recovery continued, it improved and what a joy to NOT have to struggle with the constant nausea I'd experienced before my transplant. I hope this doesn't discourage you, but it kinda sounds like you're about where you're supposed to be. I still HATE getting labs drawn; they seemingly took them almost constantly back then and I must admit, they're not my favorite thing even still. However, I get them drawn about every 3 months now--not every 3 hours or days which is a welcome relief. I had the support from communicating with other transplant candidates & recipients & their family members around the time of my transplant, many thanks to the transplant team I worked with at that time. (I received my transplant at the UCHSC--Univ Colorado Health Sciences Center) It is a good thing and these many years later now I still keep in touch with a few, so building those relationships really pays off and keeping in good touch with your doctor & other med staff can really be a help for you. My nurse transplant coordinator & I still check in every so often, which is one I do treasure. 🙂 Just keep swimming; just keep swimming. These things too will pass. The worst already has; years of illness, multiple hospitalizations, they lessen (finally!) and as he grows stronger, your life will have less stress, he will get healthier & you'll have good & happy times still ahead to be experienced. Hang in there!

A few other items: I took fairly high doses of two different immunosuppressants at the beginning & they certainly did not make me feel great, in spite of the fact they did their job & kept my new organ doing well. It'll get better. I rested A LOT when first home for a few month at least. And no, it didn't always come in great sleep. But it did get better. Today, I take a low dose of 1 immunosuppressant & that's great. Over the years that have followed since my transplant, the tacrolimus caused its own problems & now I only have to take 0.5mg sirolimus; yay! I certainly do empathize with the new & uncomfortable situation you are currently trying your best to cope with. As a fellow liver-transplant recipient friend, loudly greeted me while still in hospital during my 3-week post-transplant hospitalization one day, upon hearing me voicing my complaint, told me, "Yes---you CAN do this!" And he was right! And I needed to hear him yell that back to me too at that time. Enough said!

The first 3 months post transplant is the most challenging. However, even with the side effects of recovering from major surgery I felt better almost immediately post liver/kidney transplant. It's most important to make sure the meds are taking on time. At first it is confusing but after a while it becomes routine. Prior to surgery I lost nearly 100 lbs and it took me 6 months to get back to a healthy weight. Now I feel fantastic and have to lose weight (I'm 16 months post dual transplant). My sense of taste changed so your spouse may have to experiment to find new foods that he enjoys and are healthy.

@usgillettero1960, I thought I'd check in. You received some helpful replies from members and hopefully you don't feel so alone.

How is your husband doing? How are YOU doing?

I had a liver and kidney transplant about 6 weeks ago and I can completely relate to this. At first I could hardly eat anything but I forced myself to get something down. I had no appetite and it still isn’t much better. Things don’t taste the way they should. I think that he will find that it does slowly get better. Give him time and talk to your transplant team about any concerns. The strong meds that we are on also bring some side effects.
As to being ‘spacey’ I find that I was very much so but it is getting better with time. Best of luck to both of you.

@cheitmansd, it's helpful hearing from someone who is on a similar timeline. I bet @usgillettero1960 appreciated reading your post.

Congrats on the new liver and kidney. @rosemarya is also a double organ transplant recipient. May I ask what led to your needing a transplant? Is the eating getting better with time as well as the spacey feeling?

Thanks Colleen.
I discovered several years ago that I had stage 4 kidney disease and cirrhosis of the liver. I was evaluated at Mayo several times and this year was determined to be eligible to get on the list for transplant.
The eating and spacey feeling are getting better as time goes on. I am so looking forward to a new improved life!

@cheitmansd, Congratulations on your recent liver and kidney transplant! I am also a liver and kidney transplant recipient and received my transplant at Mayo Clinic. Mine was in 2009 at Mayo Clinic in Rochester. Which Mayo Clinic were you for your transplant?

I was on dialysis prior to transplant. My kidneys failed suddenly as a result of my liver. And so my diet was resticted before transplant. Immediately after the transplant surgery, my sense of taste returned and I enjoyed food again. However, there are some things that I no longer want to eat or to prepare. Spicey foods, fried foods because of gall bladder removal with liver transplant, and pork are some things that I no longer want to eat.
You mentioned feeling spacey. That is something that I also experience. Over my 15 years it seems to be bothersome when my tacrolimus trough level is too high and needs adjystment. Currently, you are on high doses of all your meds, and your body is still recovering so I would expect that you will be noticing improvement over time. It is important to keep your transplant nurse informed of any changes that concern you - now and throughout your new life.
How are you getting along with recovery? What are some things that you are enjoying since the surgery? Do you have any questions? I would love to hear more about your experience.

Rosemary, I also had my surgery at Mayo Clinic in Rochester. Recovery is going pretty well, but I find that I am impatient and just want to be better quickly. One thing that I have noticed is that where I previously needed a nap nearly every afternoon, I no longer have to nap at all. Big difference for me. I am slowly being able to get a few things done around the house. I still feel weak so I do a little and then sit a little. I have contacted my team with questions and they have been great about answering them and very promptly. They are great! I think that I just really didn’t know what to expect after surgery. I am looking forward to being able to do more and more.