Upcoming transplant

[wheezoids21]

Good day all, I finally have my transplant date..july 20. I am interested in learning from members here on what to expect in terms of what happens in the first week after the op and how long it took to fully recover. I work outside and do a lot of heavy lifting and always have my hands in soil. Im aware that we are all different but would like to hear best and worst case experiences please. I feel as if i am bracing myself to go into battle and cant wait for it all to be over. Mine is a living donor via a paired exchange program btw.

[Countryclub]

I’m 8 months post surgery with living donor. 67 years old and type 1 diabetic. I live in the country and do outdoor farm type stuff. Went home on 4th day post. First week was a lot of tv watching and walking slowly for exercise. Day 6 walked about 1/2 mile. Built up to 2 miles per day by 3 weeks post. Wouldn’t lift anything more than 10 lbs for a month. After 2 months I was feeling great, just doing lots of labs. Dug a hole to repair underground pipes at about 2 1/2 months. Just take it easy and listen to what your doctors tell you. Good luck.

[Jamok]

How exciting! Congratulations!

You are right, everyone is different. I’m 3 and 1/2 months out and recovery has been slow but steady. I had my transplant on a Monday and was discharged on Wednesday. I had to return to the Transplant Center to get my catheter removed on Friday and I had to use a wheelchair because it hurt so much to walk and I was moving at a turtle’s pace. Stairs were difficult, but I took them one at a time with my husband at my side. Everything was in slow motion, if I dropped some thing, I just let it lay- technically you’re not supposed to lift anything more than 10 pounds the first few weeks or drive. The first three months they have you on a lot of immunosuppressants. I have to be careful in regards to exposure to people, and avoiding food poisoning. Two weeks out, I started to move less gingerly. Every day does get better.

[Darlenia]

That's great news! My hubby received his transplant about two years ago. At the outset, he was put on extraordinarily high levels of immunosuppressants - which is common. Right after surgery, our transplant team reviewed the the things he couldn't do for the first three months - namely, he had to be cautious around fruit and veggies (scrubbed and bad areas cut out), deli meats (cook first), and so on. Crowded area were to be avoided and so on. Re your post re having "hands in soil" and "heavy lifting", he was told not to garden and more because of all the bacteria and microbes on it. And he was also given lifting restrictions. So simply be aware of that. These restrictions were later lifted as his medications were adjusted and his body pulled itself back together. I'd like to add that while the vast majority of transplants work out beautifully from the beginning, there are some that do wind up with complications. So plan on things going very smoothly, but also be aware that sometimes the ride is very bumpy. We were just so naive in that regard. If complications occur, the transplant nephrologists and surgeons will pull you through it. They are truly the best of the best. Wishing you a wonderful outcome with that precious gift!

[bluekidney]

Congratulations on your upcoming transplant. It is definitely something that is different for everyone and you can never really prepare for it but the first couple of days you are on high doses of steroids and the anesthesiologist tells you he pretty much numbed all your nerves in the area to make the pain more manageable. You’ll be walking by the next day they want you to start moving but at the same time take it slow listen to your body. My transplant team didn’t let me do heavy lifting, no abdominal Exercises, be exposed to anyone and be outside for 3 months but again each transplant center is different.

The main concern after transplant and working outdoors is your immunocompromised state. They will want to avoid any infections especially at first and secondly sun exposure. You will need to use a lot of sun screen and clothing that will help protect you from the sun as you will now have an increased risk of skin cancer.

You’ll just need to speak to your transplant team when the time comes and work on the best care plan for you based on your needs. Best of luck to you with your surgery and a speedy recovery.

[wheezoids21 in reply to bluekidney]

Yes...i have huge concerns about the sun because i live in a sub tropical country. I wear arm sleeves and a gigantic hat, which limits my exposure to the sun but roasts me alive at the same time. I feel like im doomed to skin cancer because my whole childhood was spent running around half naked and barefoot in the sun sand and sea lol. How did you find the stent removal? Was it painful or just uncomfortable? Im dreading that.

[LeslieK in reply to wheezoids21]

I dreaded the stent removal too. I asked for laughing gas to calm me down so I would lay still. It was quick and didn’t hurt just awkward. Felt so much better after that thing came out. I also took a pain pill before.

[bluekidney]

Stent removal I can give you the good and the bad. I have had two stent removals one due to a ureter reconstruction not related to my transplant. My recommendation is to take a Tylenol or pain medication given to you by the transplant team before the removal maybe 30 minutes before.The first one was just uncomfortable once it was pulled some burning not extremely painful the urologist gave me some pain meds before getting it removed. The second time after my transplant I forgot to take Tylenol and the urologist didn’t give me anything when he pulled it it hurt and I had bleeding and burning. He said it was normal this lasted until the next day. I had to take Tylenol it was uncomfortable but not unbearable. Most people have good experiences though and it is over in less than 30 seconds.

[wheezoids21 in reply to bluekidney]

I too had a ureter reconstruction, but that was 40 years ago and I dont remember having a stent....but it's possible that I did.

[bluekidney in reply to wheezoids21]

it’s possible you did not have one my ureter was completely severed by a kidney stone so not sure if that’s why the stent was used. I don’t look forward to any more stent removals however. I recommend you don’t get worked up over it in anticipation. It’s done in no time.

[wheezoids21 in reply to bluekidney]

Lol ok ill try. Think ill need something stronger than tylenol though!

[WYOAnne NKF Ambassador]

Remember after your transplant you will be on steroids and immunosuppressant meds. These meds make you heal slower than the average person. Please do what your doctors tell you. Usually no heavy lifting. Walking is the best exercise for the first couple of months. Be careful with your bending over! No sit ups for you! You don't want issues for the rest of your life

Just be real careful with your activity. I developed an incisional hernia in my transplant incision. It created horrible "nerve" pain. Had to have it repaired twice before all was AOK again.

Best of luck with your transplant. And do celebrate your new chance at LIFE!!

[grateful23]

Congrats on your upcoming transplant! My transplant was a little over four weeks ago, and I've been very blessed with a relatively smooth recovery. I was in the hospital for 4 days, and when I came home, I was extremely grateful that I was more mobile and independent than I had expected. My pre-op educational material had shown a patient needing someone to help bend/straighten legs & my husband was dreading having to help me get up every 2 hours to empty my bladder at night--thankfully, that wasn't needed! I did move to sleeping on a couch as it's lower than my bed & easier to get up from with minimal stress on the incision site. My husband helped put some dishes out on the counter so I wouldn't have to reach high for anything, and then I basically could manage basics independently at home. Perhaps the stronger pain meds from the hospital lasted for a few days, because I even did some laundry after a few days, but then I realized that was pushing it a little too fast. About 2 weeks out, I walked 10K steps for a few days, but then the pain got worse, so I'm trying to be better about listening to my body and not pushing too hard too fast. I have had some muscle pain (usually in my legs, once in my arms), but I don't know if this is because I pushed too hard with exercising or it's a side effect of meds. I was on prescription pain meds for about 2 weeks, and stopped taking Tylenol after 4 weeks. There's still some pain, but I think it's nerve pain, and the Tylenol didn't seem to do much for that. Aside from pain, one of the main discomforts was bladder pressure, even when I had just emptied my bladder. This was probably due to the stent. I just had the stent removed two days ago, and it was literally a 60-second procedure, no worse than a pap smear. I had been dreading it, too, but it went really smoothly and the bladder pressure has not been an issue so far. I have had some blurry vision, but I think that's because of the prednisone; my dosage just went down, and I'll see my optometrist in a month after my eyes adjust to my (hopefully) long-term prednisone dose. I did buy some sun protection gear from Coolibar, as I am worried about sun exposure with the higher cancer risk. I've also had to spend more time figuring out what foods are safe to eat. Overall, I've been very fortunate to have a relatively smooth recovery. I hope yours goes smoothly, too! Best wishes!

[Jayhawker]

I’m about 7 1/2 months post-transplant. I fell and injured my right foot three days before my transplant. That made it more difficult for me to walk post-transplant. Soooo, I was released from the hospital to rehab for my foot. I was in rehab for about 10 days. I initially used a walker at home but am now walking at home without it. I still use it when I leave my home though. I’ll finally see a podiatrist next week. At this point we really don’t know what I did to my foot. We’ve been busy with transplant appt and labs for the kidney. I’m looking forward to getting to my podiatrist next week to get this foot thing figured out!

My kidney came from a deceased donor. It began working immediately. The surgery went very well. I was off pain meds within 24 hours of the surgery and just used Tylenol as needed from that point on. The incision healed without problems. I live alone. I had help for the first few weeks after I got home from rehab but have been essentially by myself since with help as needed from neighbors. At rehab they helped me identify some assistive/adaptive devices I could use at home to function independently, e.g., grab tools. I used those for the first 4-6 weeks at home.

I’m walking about 1 mile a day now going about a third of a mile at a time. This isn’t due to strength or endurance issues though. It’s my foot injury. I also have a recumbent elliptical machine. I’m able to use that without overly straining my foot. So I do 30-minute moderate level workouts on that 4 days a week. I also do 45 minutes of light workouts on it daily to supplement my daily walking.

Definitely listen to your doctors and tell them anything you’re experiencing that is different or out of the norm. It’s a team, including you, all of whom are focused on the health of the kidney. The better your new kidney dies, the better you’ll feel.

I would echo what others have said, expect the best but be prepared for anything. There will be issues that arise like low white blood cell counts of CMV or BK virus. But the transplant team is prepared to handle anything that crops up.

Jayhawker

[KingofHearts]

Good for you! I'm 9 years healthy post-transplant. I do a lot of outside and gardening work. 2 suggestions. Get yourself a few pairs of good gloves. A lot of good organisms in your soil may not be good for you. Also, look into UPF 50+ clothing, such as Coolibar.

[wheezoids21 in reply to KingofHearts]

Unfortunately, the company i work for has uniforms...but I have managed to get arm protectors which work really well. I ve given up on sunblock because it is so humid where i am that it slides right off...even waterproof stuff. Got a big hat. With gloves im worried that theyll get so sweaty that theyll be a health hazard with all kinds of microbes growing in them. It is just so unbelievably humid in the summer here that its hard to adjust to a compromised immune system in some sort of comfortable way. Today its only 83F...but 90 odd % humidity... a breeding ground for ickiness

[ArsenalFan]

We are all so happy for you. I will be 10 years on the 30th of July. The living donor was my wife. and so blessed we are both doing great. Take it easy, drink plenty of water, eat healthy, take meds on time, and exercise. Watch your weight after the transplant and your glucose as diabetes is a side effect of the meds. .

[Seanthesheep]

Congratulations. You can expect to feel fabulous. But you will need around a month to sort the meds and remove the stent. Good luck .

Sean

[wheezoids21]

Arghhhh! My transplant was cancelled 10 days before. Some issue with the donor. How very disappointing.

[LisaSnow in reply to wheezoids21]

Very sorry to hear that. You must be extremely disappointed. There will be another available for you soon so hang in there and take good care of yourself.

[Beachgirl32 in reply to wheezoids21]

Sorry to hear this I know it is a disappointment but you want to make sure it safe fir you and the donor hoping it will happen soon for you .

[bluekidney in reply to wheezoids21]

I’m sorry to hear this but hoping you get another call sooner than later.

[wheezoids21 in reply to bluekidney]

Thank you...me too. I hate the not knowing. Having a transplant date was great....while it lasted....

[peregrin]

Ask your transplant team what their protocol is on prednisone. Some doctors approve of early withdrawal, others do not. Late withdrawal is almost never done.

Prednisone will cause bloating, weight gain and possible diabetes.

[wheezoids21]

So my transplant is back on again with another donor.....got the notification 10 days before the surgery! Due to have the transplant in 4 days now and very nervous.

[GardnerADK]

Hello, The roller coaster ride of waiting for the organ transplant and months after takes patience and you are doing great. My spouse who has PKD received his transplant Nov2018 and the first 14 months were not good due to problems with organ problems, medications, a rejection 2 months after surgery, low red blood count for 9 months and getting the CMV virus. To this day he felt better before the transplant than now mainly due to antirejection meds and the side effects he has from them. They play a big role in complicating his diabetes too. He felt better and was more active before the transplant. Most people from reading this website since May 2019 do not have the story my spouse has endured. Every one is different. My spouse was very active before transplant and at age 59 and GFR 13, h e had the transplant and never was on dialysis. Most days he does not feel well. I am just speaking the truth. We still live isolated due to covid19 too. Like I said, everyone is different and the risk choices a person takes if 'personal'. I wish you all the best.