Transplant recovery advice

I’m expecting a transplant any day now, and I’m hoping to get some shared experience and maybe a few pointers.

Part of me is nervous about the big surgery, part of me is excited that there’s a chance I will go back to “normal.”

What are some things that worked for you after transplant? What didn’t? Should I push myself right away, or baby myself until I get some time under my belt?

I’m a 36 year old male with a wonderful wife who supports me and a 3 year old son who motivates me. My son is my world, so I’m eager to get back to him ASAP, but I’m nervous about him being in public daycare, all the germs he’s exposed to, and me being immunosuppressed. When will my immune system be strong enough to allow me to spend more time with him?

Thanks in advance for your help and sorry experiences!

Frank, the weeks before my transplant were emotionally draining, but I am glad you are getting close. It is an emotional roller coaster when you receive a transplant.

The best thing I did was walk. The day after the transplant, I was walking in ICU. Once on the transplant floor, I continued walking several times a day, but be careful to not overdo it. I did one day and paid for it the next day with fatigue.

One thing that was a surprise to me was the inability to get comfortable. My sleep was poor in the hospital and for several weeks afterwards due to the incision. While in the hospital, my wife had bought a new bed and was miffed I could barely get comfortable only on the couch, where i slept for three weeks. This inability to get a good night’s sleep contributed to multiple naps throughout the day. Also might be a good idea to buy a mattress pad just in case.

Aside from taking progressively longer walks, baby yourself. Sleep when you need, as it will likely be fitful at times.

As far as dealing with germs, get several bottles of purell and place them around the house. Whenever you pass by one, use it. As part of the transplant paraphrenalia you’ll receive, you may receive masks. I never used mine, but have seen many transplant patients who use them It may be a matter of how healthy you are pre and post. Since there is a daycare involved, might be a good idea to use them, and to purell your son’s hands as well.

Also, be mentally prepared for bad days, as they will happen, and keep your focus long-term.

So glad to know that your transplant is coming soon. It is a wonderful an exciting day when you finally get the call. There’s so much I could say about that day but the biggest thing is that your wife have bags all ready for both you and she or at least has her quick packing list ready to go down. The day I got my call we really felt it would be that day possibly and so my wife was packing all morning when I got the call about 11:45 in the morning while I was in town. Oh my, it was something else. One suggestion for your wife, go ahead and pre-write an email and have all the email addresses already entered in announcing you got the call. You can have most of the information all in the email and then just before you head to the hospital, finalize the email and hit send. Just keep in your draft box. It will save having to call or text so many people at once. That helped us a heap. Any other specific questions you might have about packing, etc. feel free to ask.

Regarding after transplant, your body will tell you how much you can and should do. One important point though, listen to the restrictions on lifting, they are very important and very necessary. I was not able to lift more than 5 pounds for 3 months after transplant, then they raised it to 10 pounds for 3 more months, etc. Keep in mind that a gallon of milk weighs 8 pounds. You just have to get used to allowing your wife and family to lift and do for you. Even opening a heavy door is not good. You don’t want to pull anything loose inside. If you live far from the hospital, they are going to want you to stay close. I would recommend somewhere like a Residence Inn that has a full kitchen in the room. We got a two bedroom suite, so my wife and I stayed in one and any family that came to visit stayed in the other. Plus there was a large living area and nice desk. If your job allows you to remote in to your office computer, have your VPN remote stuff all ready to go before surgery. The thing is, that if your surgery goes well with no complications, you will have so much new energy that you haven’t had for years that you are not going to just want to sit around for a month with nothing to do. Take 15-30 minute walks each day. It helps keep the scar tissue loose which cuts down on the pain. If possible, ween off the narcotic pain meds as soon as possible. After I was released after six days in the hospital, for the most part I took two extra strength Tylenol 3 times a day which was all that was needed. The drainage from the incision drains can get messy, so have plenty of t-shirts, underclothes, etc. to change in an out of.
Regarding germs, it is true you do not need to be around sick children, especially in the early months after transplant when the immune suppressants are at such high levels. Make sure everyone coming to visit you washes their hands thoroughly or uses hand sanitizer. A mask is not needed but human contact should be very guarded. Even now 2-1/2 years post transplant, I rarely shake peoples hands, and when I do I make sure and wash them soon after without touching my face, etc.
Everyone’s different, but I was actually able to go into work for 2 hours a day a month post-transplant and then over the weeks and months ahead I increased that. Just listen to your body, follow your doctors instructions and you will be fine.
Keep us informed how things go. We are rooting for you!

Merry Christmas,

PSC 2011 / Liver Transplant 2015

Well, it took much longer than I thought, but I finally got my transplant in April. I was literally out of time when an organ became available. I was already in the hospital because of how bad the PSC had progressed when they came into my room and told me they had a liver. I swear, if they waited another week, I probably wouldn’t be here.

I had a rough first few months, which is why I was not on here, but I’m at month 4 now, and I feel great! For all of you on the transplant list, keep hope!

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Congratulations on a successful transplant. I’m so glad that one became available for you and none too soon. It will take some time, but you will bounce back and I know you probably already feel so much better than before transplant. Wishing you the very best moving forward. We welcome your continued contribution to this site. We are getting new members every week. I’m beginning to wonder if this rare disease called PSC isn’t becoming more common than it used to. Take care.

Liver Transplant 2015

Frank, welcome to the club! I’m glad you received the liver in time and are now doing well, and I hope you continue to do so.