Hi There,
I am a 62 years old male, with CKD 4 , EGFR as 16 and creatinine 4.07 . I have been listed for Kidney Transplant. I need to talk to people who have already got the transplant done and what kind of experience they have after getting the transplant. Any complications they had, is it better or worse. Please have the community share their experiences so I can make a better decision for myself.
I am same age and had transplant one year ago. My bloodwork was very similar to yours. First few days were a little rough but all uphill from there. I have energy and eat whatever now. I am very active, and nothing stops me. Med changes here and there but very happy thus far. Good luck to ya!
thanks for your encouraging response and moral support means a lot to me.
Hi Ashdev. I am a 72 yr old male. I started dialysis when I was 66 and had a transplant aged 69. The surgery was straightforward and I felt better right away. I am now 30 months post transplant. My readings are stable. I only get checked every four months and I feel very well.
You are facing a difficult time and you need to be strong. But there is a big light at the end of tunnel.
Best wishes to you and your family
Sean
Thanks Sean, for sharing your experience
Hello Asahdev. Welcome! I received a kidney transplant almost 9 months ago. The surgery went well and recovery from it was easy. I had very little pain, if any, really. My kidney began working right away and within hours of the surgery itself, once I was awake and in the step-down unit, I knew my life was changed for the better. The hard part of transplantation is being immunosuppressed. As I have posted in the forum about my challenges already, I won't plague you with them here. But, until your immunosuppressants get dialed in to the right levels, you are at increased risk for viruses. The most common ones transplant patients face is the BK virus and Cytomegalyvirus if you or the donor kidney were positive for it. CMV is very treatable, BKV is generally treated by going as low as possible with immunosuppression. Some recipients in the forum have received IVIg as a treatment with good success. Life is so much better with a transplant in spite of it all. Transplantation highlights for me how precious our time is on this earth. It makes you more conscious of the choices you make... What you eat, what you choose to listen to and how you spend this time you have. I wish you all the best in your decision making process. PS. My dad had his 2nd kidney transplant at your age. He lived another 17 years and was unstoppable!
Hello,
I had a living donor kidney transplant on 5/5/2023. I had the drain tube removed yesterday and it’s literally leaking clear fluid. I’m soaked even with the use of towels. The cotton 4x4 sterile covers are a joke. Did you experience any leaking from the hole where the drain was? My skin is bruised and burning and I can’t seem to keep things dry. I was wondering how long this lasts. The fluid is clear. I’m very paranoid about the staples healing correctly. Any suggestions to keep this area dry with a constant slow teardrop leak? It’s above my hipbone at the start of the incision so pads are working in that spot. It’s dripping down my leg and soaking pants and towels in no time.
Thank you for any input you may have for me.
My new kidney started working immediately and my kidney numbers are unbelievable. I had a zero mismatch identical twin dna from my sister. It’s amazing. I am ready to rest at home and recover.
I concur with BlueSkyAngel's advice to bring it to your team's attention. My hubby wound up with a "ureter leak" which needed additional stenting and a JP drain. Urine literally poured through his incision. Although you seem to have a slow drip situation, you're also using a towel and your skin is burning which raises my radar a bit. So, to be safe, ask them to check it out. (My hubby's leak started slowly and increased up over time.) Only two percent or so of transplants wind up with this, but those statistics involve real people. The good news is that if this can be fixed. And my hubby's staples held up well.
thank you both for the quick response. It’s a leak out of the hole where they removed the jp drain. It’s a drain hole that’s dripping. It’s not leaking when I go to the bathroom.
Maybe it will resolve over time or maybe they will close it up. Interestingly, the body can take care of minor leaks internally. Do bring it up with your team though, I'm definitely not a medical professional.
I called the coordinator at OSU. He said it was normal as long as the fluid is clear or light pink and to use thick gauze but change them constantly to try and keep it dry. He said this could go on for days. I’m nervous but the fluid collection pockets are better draining that stuck inside.
From my experience I only had my JP drip a couple hours after my surgery my body pushed it out as it tends to do with a lot of my tubing it heals too fast the doctors say. I had the same issue and mine did not completely heal over for about 3 months so don’t be concerned if it isn’t healing quickly. My transplant was in the summer so with the sweating which was different for me I hardly ever did when on dialysis, it would cause the scab to fall and again had an open wound. My transplant team kept saying it was normal. My advice is to keep it clean change the gauze as often as needed. Look for signs of infection. Once the oozing stops possibly even use tegaderm to keep the area dry. Wish u luck and a quick recovery.
Hi Blueskyangel,
Thanks for your encouraging response and good luck to you for a successful transplant.
Thanks for your support and response.
Hi Leslie K! Congratulations on receiving a kidney! In my experience, I was given 9.5L (nearly 21 pounds!!!) of fluid within the first 2-3 days of the transplant. This was to keep the kidney flushing and happy. I suspect you must have received a good amount of fluid, as well. My kidney is tucked behind my pelvis and it sounds like my scar is in approximately the same location as you have. When I was in hospital in February, a roommate had a leaky surgery site and ended up getting a drain for a few days. Maybe this is what you need. You could possibly need a few extra stitches. The body should be able to absorb fluid and get rid of it naturally, but if a quicker exit exists extra fluid will take it. It may be possible that your body is still sluggish from anesthesia. These things happened to the roommate I mentioned. Try not to be discouraged. Demand that your team address the issue because the surgery site can't heal if it is wet all the time. I hope this helps somehow. I wish you all the best and give an update on your situation when you can.☺
Hi! It appears that you're hoping to get a transplant without the needing to go on dialysis If so, that's wonderful. You're also wise in asking about our experiences with the transplant process. My husband and I were unaware of what "could" happen, simply accepting that a transplant would go well as they usually do. My hubby was 71 when he received the first call. That transplant didn't happen because he had a uti. After the uti was corrected, my hubby received another call. The surgery went well. Immediately afterwards, he had very swollen scrotum which, we were told, wasn't unusual at all. That subsided a few days later. Then, the immunosuppressants brought back his diabetes, which he had controlled through diet up to that time, so that was addressed. He was sent home. However, two weeks later or so my hubby wound up with postoperative a-fib, a ureter leak, and a drop foot. These things were all eventually corrected by his team. (Unfortunately, his drop foot led to bad fall which resulted in brain surgery but I consider that a separate matter.) There were several times we wondered why we had given up dialysis for a transplant as we faced one thing after another. But he is now in wonderful shape and is thrilled he is no longer tethered to a dialysis machine. We travel, we exercise, and we enjoy life. It's now almost two years post transplant and he still works part-time! I asked my hubby recently how he felt about his journey, and he said he would not change anything - a transplant is far better than dialysis. Looking back, I think age makes a difference in recovery, type of deceased donor kidney assigned (we accepted one with conditions), and more. At one point, I was angry at myself for being so naïve - I had never noticed the transplant "fixit" beds on the floor until my hubby wound up in one. So I decided to be honest with everyone who asks. The chances for these things happening are often very low, but there are human beings in those statistics so simply be mindful. A transplant is major surgery after all - affecting a person's entire body. It's amazing, actually, that modern science can actually do this. Even though my hubby went through a lot, my husband is very happy with the outcome. A human organ is always better functioning than a machine. Go forth and be at peace - know that a transplant team can pull you through virtually everything!
Thanks Darlenia for your quick response. I was wondering if it is ok to accept a deceased donors Kidney who may have Hepatitis B or C. Lot of deceased Kidney donors are the one who died of drug overdose and may have health conditions like Hepatitis B or C. Since I am not on dialysis yet so I am just being a little conservative in accepting those kind of kidney donors.
My sense is that younger people are more likely to be given younger kidneys with greater longevity and so on. Older people seem to be given kidneys from older deceased donors and those kidneys have a little more mileage on them. And this seems fair to us. My husband's first offer (which he couldn't receive due to the uti) was from a 60 year stroke victim and a "great" match, my husband's second offer (which he did receive) was from a 45 year old heart attack victim who was deceased for a time and had a fungal issue and an "average" match. We agreed that we were okay with that. Luckily, the kidney functioned well immediately. As with Hep C kidneys and others, my husband was put on medication to treat the fungal issue and it cleared up without any additional steps. We told both transplant centers that we approached, that we were interested in all kidneys, even those with conditions. This made a huge difference in having a transplant sooner than later - wait lists at most centers are exceptionally long and we were acutely aware that my husband wasn't getting any younger. We are very pleased that we were proactive. My hubby only waited a year from the start of dialysis to receive his gift. And his lifespan now is likely to be far longer than it would be on dialysis.
Hello asahdev, you can look at my many indepth past postings probably by my name. My spouse had PKD and had transplant Nov2018 at 13 GFR and had never been on dialysis. He felt better before the transplant 4.5 yrs ago. I'll leave it at that. Everyone is different and the antirejection meds is the primary issue in his case of so many side effects. Just look at past posts. I wish you all the best. So many people have great stories to tell, I am not one of them.
My experience is similar. I had a preemptive living donor transplant and so was never on dialysis. I felt much better before transplant. The surgery recovery was quick and easy, but the mmunesuppressants make my life hell. I developed med induced tachycardia, have severe diarrhea, insomnia. Med changes and adjustmentshave not made a difference. I have had skin cancer ( this from someone who religiously used sunscreen the past 30 years) & get more infections which are more severe & longer than I've ever experienced. Until the research underway now to pre-sensitize recipients do we can go withoutbimmunesuppressants,, transplants will carry significant quality of life issues for some.
Thanks for sharing your experience. Hope you recover soon from all the side effects of medications you are facing.
HI NoCaGirl, I seldom hear from others who are not having a good or great experience past the first year after transplant is done to live a full life. My spouse is 4.5 yrs and the transplant doctors made changes to his medications the first 14 mos to help him feel better, nothing has helped him. His blood labs were not good all that time and now as of 1/2020 are good and still are, but he does not feel well. He had chemo 33 yrs ago for Hodgkins lymphoma and is in remission long ago, but he says part of how he feels is like being on chemo drugs. His diabetes to manage also got much worse and before transplant he had one insulin drug shot at night and he managed it very well for 6 yrs prior. Now its 2 different insulins and shots 4X a day and the antirejections meds seem to be the main culprit why he cannot regulate his glucose despite all his efforts. Anyway, thanks for speaking your truth. I grow tired of people discounting that some people years after transplant just don't feel better. I sincerely wish you the best.
Hi Asahdev,
I was young when I had my transplant, I had just turned 30. My experience would likely be much different if I was older. I had been on dialysis for almost 9 years before my transplant, and I was in extremely bad shape from so many years on dialysis. I lost half my body weight, was stuck in bed for almost a year, had to learn to walk again, and had been diagnosed with thyroid cancer all before my transplant.
The transplant was definitely a struggle. I had a 4-point mismatch (2-point match), from a 40-year-old deceased donor who had a stroke. Despite the high dose of immunosuppressants, I experience antibody mediate rejection almost immediately. I continued dialysis in the hospital twice before the biopsy results. Eventually, I had a high-dose steroid treatment which stopped the rejection and the kidney finally started to work 10 days after the transplant. The high dose tacrolimus and prednisone caused really high blood sugars and I had to take insulin for the first 2 months.
After 3 months the meds were stable and I adjusted. A year after my transplant I contract some unusual acute hepatitis they could never diagnose and had to adjust my meds for 6 months before I finally recovered. Besides the hepatitis, I had multiple UTIs, bowel obstructions, and severe side effects from the tacrolimus including memory loss, body-wide cramps, tremors, and sharp bone pain. Eventually, I switched to Rapamune at year five, and my life began to improve even more.
I am about to reach my 19th anniversary and despite what appears to be a list of problems, I would gladly take these problems and more to never see the inside of a dialysis center again. Besides the obvious freedom, I am now able to travel, hike, exercise, work full time, and basically spend my life not worrying about my health.
Thank you so much for taking your precious time and sharing your past experiences.
Yes- I have a UTI I think 2 weeks post transplant. I’m on bacterium already so it seems odd.
i am going on 5 years with my new kidney and other than a few hiccups and a near death covid situation, I am doing great. I skipped dialysis and went straight to transplant which was my plan and was in a paired exchange with 3 donors and 3 recipients. Received a living donor kidney. You will be on meds for life but I take mine 12 hours apart at 9 and 9. Diet is normal except that all foods must be fully cooked. The first couple of weeks were tough recovering and adjusting but once everything heals and you realize how bad you felt before because you feel so good now you will be happy!
I have never regretted getting my transplant!! It has given me a second chance at +LIFE
It you have problems after, it is so important that you let your transplant center know. I had my dose reduced, etc. No problem or issue cannot be solved!!
I am 23+ years post transplant and have had a fantastic 2nd life!
Life is worth any issues you may have post transplant! I have seen my daughters marry and I now have my buddies =- my grandsons. I worked full-time and had a fantastic career in gerontology. We now travel and have a great time visiting old friends and having new experiences! I would take a transplant every time!
Hi, I understand your concerns as I was there not long ago. I’m 60. On March 12,2023, I got the call for a brain dead 9 yr old child’s kidney which was supposed to go to someone else but they tested positive for Covid and my name came up.( only 5 days after I was reactivated on the list.) I had a gfr of 7 when they checked me in for the transplant but I still felt good and was able to avoid dialysis. The transplant surgery was successful thanks be to God. I had a lot of incisional pain, but the pain meds took care of it well. I was weak as a kitten at first- it was rough but it is a major surgery so to be expected. I have not experienced the immediate feeling of ‘oh my gosh I didn’t know I was so sick because now I feel so great’ like some people do because I never really felt that sick. I also think it’s high doses of steroids that can make you feel elated. And mask the pain of surgery. My center doesn’t use them so I was weaned off within the first week. Around the end of the second week, I developed horrendous stomach cramps. I had nothing but liquids for a week and lost a lot of weight but after a switch from generic to namebrand myfortic that improved slowly, but surely and since my antibiotic has been reduced to three times a week, my stomach is even more improved, and I don’t really think about it too much. At eight weeks out, my pain has reduced almost nothing unless I really overdo it, I’ll feel a twitch here and there. Gaining more strength every day and starting to look and feel like myself again. I do get some anxiety when it comes to looking at blood work results but if I have concerns, I’ve learned to take them to the transplant center instead of ruminating on them, and searching the web. I figure if they’re not worried about it, I’m not worried about it.
Lots of health improvements so far. Right now my GFR is 60 and my creatinine is 1.06 and fluctuates between that and 1.2. My hemoglobin is finally at the low end of normal for the first time in so many years and my hyperparathyroidism secondary to kidney disease, is starting to resolve as well. I am being very careful about exposure to other people. ( and was prior to transplant)Trying to avoid infection as best I can. I have to say no to a lot of social interaction but that’s OK. I’ve waited a long time for this kidney. I don’t want to mess it up. I have to get to the point where I’m relaxed about everything and I know that will come with time. Next month they will test the kidney to see if there’s any sign of underlying rejection and hopefully if everything‘s OK I can relax a bit more and they can bring me down on my meds a bit.
I know there will be more challenges ahead. Transplant isn’t perfect. It’s not a cure. It’s a treatment and like all treatment for illness there’s drawbacks and side effects but overall you get to be here to continue to experience life and have the freedom to go places and get a sense of you being in charge of your own life again.
I’m taking it one day at a time I’m starting to get my sense of joy and hope for the future back. Every day is a better day. Good luck on your journey.We are here for you.
My blood test numbers were very similar to yours when I got my living donor transplant 4 years ago, at age 64. I was getting lethargic and having brain fog before the transplant, but not yet on dialysis. In the 4 days in the hospital after the surgery, 20 years of stuff from my PKD went away. BP back to normal, creatine down to 1.2 and 10 pounds of water weight pumped overboard. I had bony ankles for the first time in forever. Brain fog gone, energy back up. I was off pain meds in one day. Meds and I have done fine. Was just getting ready to be more adventurous when Covid-19 showed up. Being adequately cautious about COVID has been more of a problem than any of the transplant details. I would do it again in a heartbeat. Good luck.
Had my transplant in Jan 2023. I have PKD. Right after surgery was a little challenging as is after any surgery. It has been 4 months and I feel good. I go to the gym, weight lift and eat a healthy diet. My creatinine and GFR are back to normal levels for a person with 2 healthy kidneys. My friend gave me her kidney so I was very fortunate to have no complications. I feel great again and recommend this for anyone who is suffering with kidney issues. Luckily I was never on dialysis so it made my transplant recovery easier. Good luck!
Absolutely do a transplant vs. dialysis. I am 15 months post kidney transplant; the first year was a bit tough but my team got me through all of it. I have no regrets getting my transplant; you adjust to a somewhat different lifestyle after, but it is totally worth it.(Better eating habits, stay away from sick people, etc.,take better care of yourself which we should all do anyway. Best of luck to you I your journey.
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