I would like any feedback on post transplant patients. My husband would like to hear from people that has already been thru the surgery, how hard was it on them, how long did it take for them to recover from surgery, hoe they are dealing with all the medicines you have to take post transplant and how how they are doing today? He has already been thru the first two Education and Medical training and now now waiting on all the testing.
He is 74 and is worried the surgery will be really hard to recover from at his age. If anyone can give us any feedback we would really appreciate it. Thank you.
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dkesterson1
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hi there - I had an SPK transplant 6 months ago. There were difficulties with the pancreas and it had to be removed (2 days later). I had many blood clots, they think due to being on hrt treatment (I was 58 and been on them for many years). I ended up having another 3 surgeries in that week. So it was a bit problematic. I was in ICU for 15 days which is unusual. I think most people are there 2-5 days. I thought it would take forever to walk properly again but I had a lot of muscle mass to build up again. It all came together day by day and whilst it was hard and problematic there’s a light at the end - where there’s no dialysis machine!
The meds are full on. Be sure to ask many questions, read about them, etc. But ensure you never miss any.
Obviously, with time, things settle down, you develop a routine and you stay in touch with what your body’s doing.
Drink lots of water - usually 2 litres/day but he’ll be guided by his team.
They say the first 12 months are the hardest, but it’s well worth it.
Hi, Im a 52 year ild woman in the UK, and I am 2 years post kidney transplant. I was told the chances of matching were very slim and so when I received the call I was in total shock. I was told that it wasn’t a perfect match but it was considered probably the best match and worth while. I had the surgery and to be honest the first few days were difficult, but once they can get you the right pain medication, its so much easier. I had some minor complications, mainly the kidney was over active, and producing too much urine. This settled after about 10 days. The follow up appointments where exhausting, and I would listen to other people and the issues they where having and kept waiting for something bad to happen. But it didnt.
It took me about a year to come to terms with the fact this has worked. If’s not perfect, but what is! I love the fact I dont have to dialyse anymore. I have free time, I can eat almost what I want. I feel great.
The recovery is worth it in my case. The best advice I can give is talk about your concerns, especially to the nursing staff. They totally understand and have experienced so much with so many patients, they are the most understanding and kind people.
Hello, I had kidney transplant surgery in April 2024 at the age of 69. I was on PD for a little over 6 years. All things considered I was in relatively good health when I walked into the hospital after getting the call. I did suffer a heart attack in 2021 and a couple of stents were put in. Apparently during the transplant surgery there were some complications with my heart. My wife was called and told that "it's not looking good". I was in the ICU for 11 days. The first 5 days are pretty much blank. Lots of darkness is all I remember. On the 6th day it was like the sun had come out. Now I was aware of the nurses and everything else. What a difference.
By some miracle I got thru those first 5 days. Little by little I started to feel better. Of course I was closely monitored in the ICU. On the 7th day is when I think I finally got out of bed. The Physical Therapy people needed to see me walk. With the aid of a walker I was able to do that although my legs were very weak. I walked on 2 separate days for them. On the 11th day I was discharged. I was feeling as good as could be expected. Funny but I never felt any pain from the surgery itself. When I got home I was very weak. My appetite was not great. Thank God my wife took good care of me. A good support person is very important. Cannot stress that enough. I was told what I could eat and what to avoid, like anything that wasn't cooked. Coffee was limited to just once a day.
At home I was taking around 25 pills a day. Anti-rejection meds and some other things. I had to return to the VA Hospital about 3 times a week during the first month, for bloodwork and to make sure I was recovering. My wife had to accompany me. Travelling alone is a no no. After about one month it was 2 visits per week. When I got stronger I was able to go to the hospital alone. This lasted about 3 months. I was then told I could start going to my home base VA Hospital, which is closer to where I live and where I was getting care when on dialysis. I would start by seeing my kidney doctor once every 2 weeks. Now it's once a month. After about 3 months after being initially discharged some of the side effects from the meds started to kick in.
Most if not all of my issues have been due to the meds. Eventually some were weeded out and some replaced by something else. It's basically trial and error. We all react differently to meds. Right now I am down to about 12 pills a day and none of them seem to bother me. I do get an anti-rejection medication once a month via IV. It's a 30 minute process. I am now 70 and feeling about as good as I've felt in the past 9 months. Actually feel normal. I was told by numerous people that the first year is the hardest and I have to agree. I am 9 months out from the transplant. My appetite is quite good. My weight is pretty steady. I am able to walk normally without the aid of a walker. A pretty much normal diet.
It has been a journey. I spent 8 years waiting for a kidney and never thought about how things would be after I got one. Well, I found out. The last time I saw my surgeon I mentioned that the first 5 days are a blank and don't remember much of anything. He told me maybe it is best that I don't remember. I have left it at that. After what I went thru I take every day as a blessing, more than ever. I go to my hospital appointments and listen to my doctors, as I always have. I take my meds every day, no fooling around. 2024 was a year of ups and downs and adjustments. All comes with the territory. So happy to be feeling quite normal now. Hope this helps those of you waiting for a kidney, giving you some idea of what you might expect. We're all different. This has been my journey. Feel free to reach out with any questions.
I am a 74 yr old female who had a cadaver kidney transplant 27 years ago next month. I felt great after transplant. I spent two nights in the hospital after surgery and after some med adjustments the first year, I have led a very active and healthy life. I do remember not having an appetite for a bit after surgery so stock up on some protein drinks like Boost. I was on dialysis for 18 months prior to transplant so I was thrilled to be done with that whole routine! I hope your experience will be as good as mine was. My daughter had a living donor, did not go on dialysis first and struggled the first week or so with getting up and around. She finally forced herself to get out of bed and move around the house, which helped her tremendously to recover. Your attitude and your family support is everything! Blessings.
It's good you're asking questions about transplant recovery regarding the senior population. It likely will take your husband a bit longer than it takes for those younger. My husband received his transplant at age 71. He was given a heart stent prior to surgery and also experienced dialysis during the year before it happened. The surgery was uneventful. His team watched his meds carefully and changed them as needed. (He didn't need the laxative and one immunosuppressant was changed due to tremors. Later, most all immunosuppressants were reduced.) He was up and walking the next day and was released to go home after 5 or 6 days. Trouble ensued at home. He wound up with a ureter leak where urine literally poured through his incision. He also contracted a-fib and a drop foot. So he wound up back at the hospital. One thing led to another. (We suspect that, for some of his issues, he had a cardiac event on the table which caused a slow bleed in his brain.) Anyway, all issues were corrected over a year's time. At one time, we were very upset we weren't directly informed that all these negative things could happen. We went into this expecting immediate positive results, but experienced trouble instead. But, after we looked carefully into these matters, we noticed the chances are generally 2% or lower for most of these complication to develop. So, some will be greeted by some struggles, others will scoot through it just fine. If a complication (or complications) develop, they will be unique and individualized. (I hope you hear from some who did well from the outset - I suspect most never had a need to join forums such as this one.) However, because age does make a difference in recovery, it's good for both you and your husband to psychologically recognize that "something" from that long list of complications may occur. (On the other hand, chances are your husband may also experience "issues" while on dialysis. Both have risks.) But above all, please remember that you're a critical part of your husband's recovery. Please know that, as your husband's caregiver, your observations and reactions are as important, if not more so, than your husband's. Medical staff welcome them and take them seriously. Report situations as you see them, even over your husband's objections. (I didn't realize that until way late in the process.) Then, look at outcomes It's very important to recognize that transplant teams are exceptionally great at pulling their transplant patients through everything. They lose very, very few patients. My husband is now 75 and enjoying life - doing all the things he likes to do including traveling. So go forth and step out in faith, knowing that a transplant offers a great chance at a longer and improved life for you and your hubby. Keep in touch!
For me, at least the first 6 months were a little rough. Your body is healing from surgery and you are adjusting to your new meds. After the surgery they get you up and walking right away. It's hard but every time gets a little easier. I was in the hospital for a week and soon after I was walking outside at home. At first it was just around the block, and every couple of days I increased the distance till I was walking 30 minutes a day. I think your recovery goes easier the more active you are.
At first they need to get you on the "right" dose of your immunosuppressants. They do this by finding your blood level of the med in your blood stream. My dose was changed several times. I started having a lot off GI issues - diarrhea, those first couple of months They found out that I was taking the generic form of one of my immunosuppressants. It was just a little different than name brand. Within a week of switching to name brand all my symptoms disappeared. I still take name brand today. I had my transplant in 1999, so over 25 years ago!
My best advice I can give anyone having a transplant is to report any problem or issue you have to your transplant team/nephrologist. They can't help you if they don't know what is going on. And you know your body better than anyone and know when something isn't quite right. It may seem like a small issue but could become something major.
Today - some 25 years post-transplant life is GOOD!!! Early on I was a director for a non-profit, helping seniors receive services they needed. When I retired about 8 years ago, we moved to Wyoming. My husband was in the Air Force for 25 years and we fell in love with the Rocky Mts. I can be up Casper Mountain in 20 minutes from my house. Here I am a public speaker and volunteer with the WY/CO Donor Alliance. I try to give back by telling my story and encouraging others to become an Organ Donor & how you can save someone's life.
I continue to have my renal labs done quarterly and see my nephrologist once a year, more often if something comes up. We do a lot of traveling in the US seeing family and going to Jamaica, Dominican Republic, Mexico, St Lucia, Nova Scotia, Banff and just got back from a Viking Rhine River cruise - Amsterdam to Basel Switzerland.
Life is special and I am trying to honor my 16 year old deceased donor, Ryan, by living my life the best I can. I do get yearly COVID and FLU shots, but stay active. I am also 74.
If you provide me with your phone number, I can phone you at a time that is convenient. I am a 73-year old post-transplant male. I had my kidney transplant 7 years ago. All is going well. Thanks! Ron E.
I had a transplant from an anonymous altruistic donor 3-1/2 years ago. I was 57-years old at the time of the transplant, having endured a steady decline in kidney function over the previous 27 years. I also was born with a solitary right kidney. Prior to the transplant, I had not been on dialysis or have diabetes.
As opposed to the traditional transplant, my transplant was performed via laparoscopy; so, instead of having a 6" hockey stick incision, I had a 3" incision near my belly button and three or four additional 1" incisions for the trocars to be inserted. You can still see the trocar incisions, but you would be hard pressed to find my incisional scar.
I had some complications during the surgery due to low blood pressure, which landed me in the ICU for observation for several days. My surgery was performed on a Tuesday, and I returned to my home 2-1/2 hours away on Sunday.
Due to the laparoscopic surgery, I had minimal discomfort post-surgery and was off all pain meds other than Tylenol after 24 hours.
The first year following my transplant, I did 2X/week blood tests for the first month, 1X/week blood tests for months 2-6, and 2X/month blood tests for months 7-12. I now do monthly blood tests to keep an eye on my blood levels.
They made a number of adjustments to my medication levels over the first year based on the results of blood tests. Based on compatibility with my donor, I was on an antibiotic, an anti-viral, and an anti-fungal medicine for varying lengths of time. Today, the following medicines I take relative to my transplant are tacrolimus, prednisone, enteric aspirin, and famotidine. The two side effects I experience are slight tremors in my hands, noticeable when I eat or shave, and gradual hair loss. I take Biotin to prevent further hair loss.
While in the hospital, I tried to get out of bed and sit up for 60-90 minutes two to three times/day. I also took walks around the halls of the transplant unit a few times each day. The day after I got home from the hospital, my goal was to walk to the neighbor's driveway and back twice per day, which was no small feat. By the end of three weeks, I was walking 3 miles per day at a brisk pace.
Long-term, what I have noticed I am more prone to getting infections (have had two UTIs) and when I catch a cold or have an infection, it can last 2X as long as it used to last. For any sinus bacterial infection, I take a course of antibiotics twice as long as normal to make sure it goes away given my compromised immune system.
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