hello

[Zippy1962]

I'm new here, wanted to say hi. Just into my second week after giving my left kidney, finding it a bit hard going having to stay resting and a bit frustrating having to take doliprane to take the edge off the aches and pains! However every time I see my step daughter and the new lease of life she's got I would do it all again! She's 23 and back at home while the anti-rejection drugs get sorted, being back home is the most frustrating part for her! Just great to know I'm in such good company with all the donners here. All best to all.

[cielito]

I’m 63 and scheduled to donate on nov 18 in a ThreeWay match to get my young son-in-law a kidney. While it is fresh in your mind, can you tell me some tips, what was most helpful, what you wish you had done, what is worst part, etc

[Zippy1962 in reply to cielito]

Hello and thank you for your message. Sorry for being a bit late replying been thinking how to reply, could just gloss over bad bits stay totally positive or be completely honest decided second option the best. First a tiny bit of history, we have been a family since Libs was a little girl and have always known she would need a transplant so all the decisions have been carefully thought through. Also the selection and testing process for us has been about eighteen months, I have a preexisting medical condition an aneurism on the main artery to my brain which has already had two surgeries so all the relevant specialists had to give permissions and then we had convid lockdown. I tell you these things because despite all the preparation time I was still a quivering wreck and nothing like my idea of a hero for the two weeks up to the operation and that's fine and normal! So the op, we went in on the afternoon of the day before, usual prep stuff and the surgeon visit, if your surgeon says it's a big op believe them about five and half hours for me and about four for Libs. Woke up in recovery connected to lots of machines by twelve tubes including an epidural delivering good quantities of morphine a tube for urine and a drain tube from inside at the site of the surgery. Five days in hospital whilst slowly being disconnected, the only tube that was a bit of a ouch being taken out was the drain but not that bad. Then home, the first week was not hard a few things to note, the cuts do sting a bit I've got three holes about two inches diameter, a long about seven inch cut below the "bikini " line and a second cut about three inches in my side, but the main problem is getting vertical from lying down. Sitting up or getting up from in bed is nearly impossible alone please make sure that you have someone with you when you come out, being alone could be really dangerous I think. Week two is when things really went down hill for me, started with tiredness in a forty eight hour period I must have slept forty of them and it is real fatigue frankly if I had stopped breathing I really could not have been bothered to start again! Then pain kicked in, the scars really started to hurt and also "mystery"pains arrived, first my right shoulder felt like I'd been shot then the pain went to my right elbow then amazingly travelled to my left elbow and finally to my rib cage on my untouched side and it is excruciating. Use the painkillers at this point,I could not belive I got so many at the pharmacies when I came out of hospital, three days of four thousand milligrams of paracetamol and a thousand of morphine is not excessive! These pains have been explained as the air that is used to inflate your body during the operation stays in your body for many weeks afterwards and basically causes something like the bends in divers, it's not pleasant ! This is now the end of week three and start of week four and breathlessness is the problem at the minute, it is tiring and limiting although physically for the most part I'm pain free and much better just walking twenty yards or getting up out of a chair leaves me feeling like I've run a marathon and gasping for air. If you smoke now, quit. Two reasons, First of all you will not want to risk any coughs, yawns or sneezes after the op,excruciating ! Second your body needs all the oxygen it can get. As the nurse explained this morning and something that I never really considered, this is like fifty percent kidney failure in a very short time frame so with the build up of toxins in the body and the reduced oxygen carrying ability of the blood it's a shock to put it mildly! After all this would I do it again? YES. We've had Libs back home since the ops and to see her getting more and more life and getting back to life makes it all worth while a million times over. I hope this helps and would be more than happy to stay in touch and keep you updated if you would like. It's a wonderful thing your doing , stay strong and all luck. All best Graham

[cielito in reply to Zippy1962]

Well you didn’t sugarcoat it for sure! Thank you for your honesty.

[Zippy1962 in reply to cielito]

Hello again, really sorry if that was to much! Just couldn't decide. What I was really trying to convey was, no its not a walk in the park but for me if I know somethings coming good or bad I can just get through know it's transitory and its not frightening. The bit that was missing from the information beforehand was just this, everything that has happened to me is explainable has been explained just wish it had been before. That said I'm doing this in France in a second language and its different for all countries and all people I guess. Just please don't be alone for the first couple of weeks. Don't be put off don't be worried it's an amazing opportunity to really help someone, and like everybody else in six months I will if asked say "it's not that bad at all" and what an amazing result. Blessings to you, and have a great day.

[cielito in reply to Zippy1962]

You are right, I’d rather know too. I’m better prepared. Thank you for your honesty and for your donation. I’m so glad your Libs is better too! By the way, my mother’s name was Elizabeth and had the nickname Libba.

[Crocheting-Cricket]

You will feel a LOT better very soon! I gave my left kidney to my brother on June 30th and in 4 weeks, I felt like I had never had any surgery at all! If you can switch to Tylenol, do that. Much easier on you and definitely helps. I too am incredibly thankful I was able to do this whenever I see my brother. He's like a new person!

[Zippy1962 in reply to Crocheting-Cricket]

Thank you so much for that, I'm just starting to get to that "well that wasn't so bad " stage and feeling so much better for it. Just amazing to see Libs back to being herself again. All best to you and your brother and all luck in your futures.

[cielito in reply to Crocheting-Cricket]

Thank you for responding. No offense Zippy, but I do think women have a better threshold for pain. Hope I do. I’ve had two C-sections so I’m hoping it’s about like that? I don’t like the way pain meds make me feel so hope to switch to Tylenol as soon as possible. If you don’t mind my asking how old are you? Any more tips?

[Crocheting-Cricket in reply to cielito]

The pain meds really didn't do much for me and I was off them in about 2 or 3 days. Lots of Extra Strength Tylenol, though! Two things that were REALLY helpful were some muscle relaxants (mostly for the gas left behind after surgery) and a heating pad! That was a huge help! Take things slow. Most about when you can, but rest, too. A little at a time. And always look to your recipient and see what an incredible life-changing thing you did for them!

[cielito in reply to Crocheting-Cricket]

Thank you!!

[DSKdonor NKF Ambassador]

first of all - CONGRATULATIONS on having 2 successful surgeries!! I too gave my left kidney - almost 14 years ago. I had never had surgery before my donation - actually never had been in the hospital before. I was feeling pretty sick, sore, and sometimes like I was hit by a train. HOWEVER - that's because it's MAJOR surgery!!! DUH! My Dad, who received my kidney, was feeling a new lease on life immediately, even though he had MAJOR surgery too. The difference -- the donor goes in HEALTHY and comes out minus a perfectly good organ....the recipient goes in VERY ILL, and comes out with a new organ (for them) working very well. All very logical, right?!

Over time, your body will likely adjust to having 1 kidney - the first few months it will likely over work and you will have to "pee" much more often. For me, that took about 4-6 months to regulate. I can now go the entire night once again, without having to get up in the middle of the night. Once that happens and you've recovered from the MAJOR surgery, your life will hopefully be just as it was prior to surgery.... with the exception from the incision scars, which will then turn into your marks of HEROISM!!

Sit back, relax, heal and enjoy the gift of life you gave. I have never had such an amazing feeling (I do not have children...)! Again, congratulations!!

[cielito]

Im eight days post op and doing great, only taking Tylenol. Walking everyday. SIL is doing great. We will all celebrate a great Thanksgiving today. The first week was tough but I felt like I turned a corner yesterday. I still take a little nap but I’m on the mend.

[Philly57 in reply to cielito]

So, I am 6 days postop from left kidney laparoscopic donation 11/24/20. I have several weird things and one major issue that concerns me. My right buttock and flank are numb, maybe related to the kidney rest positioner. My left testicle hurts, possibly due to venous congestion after cutting the gonadal vein. The thing that worries me is the severe pain in the the left lower quadrant incision where the kidney was removed. With any activation of stomach muscles, the pain is intense, like there is a knot in the muscles. It is really hard to change positions due to the sharp intense incision pain. At rest, absolutely no pain. No pain in the other three port incisions at all -- just the 5-inch incision from where the kidney was removed. I kind of want a CT scan to make sure there is no problem that can be fixed in the early postoperative period. Cielito, is your large incision midline or off to the left side?

[cielito in reply to Philly57]

Vertical on either side of belly buttonI started having pain last night like windsunts on my left side below my ribs. Took a pain med and was able to sleep(knocked out) but tthat Med makes me feel gross. Today the pain spread into my shoulder and my nurse says it’s from the air they use during surgery. 😩I’m two weeks out and thought that part should be gone

[Philly57 in reply to cielito]

I am sorry to hear that you are still having pain at 2 weeks. I had some shoulder pain from the CO2 insufflation, but that ended about 5 days after surgery.

I thought perhaps that the Pfanennstiel horizontal incision above the pubic hair line was less painful because the muscles are not cut open, instead just split apart and reapproximated. My incision was low but off to the left side going through the oblique muscles of the abdominal wall. Your horizontal incision sounds awfully high at the umbilicus. Is your belly button incision still painful when you contract your abdominal muscles?

[cielito]

No problem there. I got over the belly soreness pretty quick. I can sneeze and cough. This is a new pain on left side when I take a deep breath

[FixitJosh]

Hello all, I have been reading all your posts and learned a lot from all your replies. I go in for my Pre-Op on April 22, and surgery, if approved on May 4. Sometimes it is scary to read your comments, but I think it is good for me to be ready for anything....I plan to stay near the hospital for a week or 10 days, and then home....I have someone staying with me for a few days there, but I fear that i should be arranging more help into week three...hard to tell. I am in good shape and walk a lot, hike trails, exercise, and eat right, etc., but I am also 68, (a "young" 68, if you ask me!). What should I be buying ahead of time in terms of over the counter meds? Or wait until I need them? Just wondering. I know that it will all be worth it over time, as my partner is 65 and stage 5 CKD, so its either my kidney or dialysis...as it turned out, we were a match, which totally floored us...but it makes it harder since both of us will be tied down at the same time. But, God did it for a reason, I guess, so we are thankful.

Thanks again for all the comments.....we love hearing from you all and your experiences. I too have not been in a hospital since I was 10...fell off my bike!....58 years ago....so I have been lucky, and I guess I am in good shape to donate....

[Gingrbu76 in reply to FixitJosh]

Hi FixitJosh! I am new to the community and read your post. I hope that May 4 went well for you both! I am checking in and curious on how things are going if you are up to sharing? My husband needs a kidney and I am trying to learn as much as I can to ensure I am ready for what is to come and to clear my reservations and calm my nerves so I can proceed with this process.

[FixitJosh in reply to Gingrbu76]

Hello Gingrbu76, To bring you up to date with me, I did have surgery on May 4....now about 4 weeks ago. Everything went extremely well for both myself and my recipient...I was feeling great the day of the surgery in the afternoon, and the next day I was up and walking around the hospital at 10AM...to see Dave (the recipient) who was doing great as well, but still a bit weaker than myself, to be expected. I was discharged after two nights in the hospital, and by the next day, I was outside walking like 10K steps, 12K steps and more each day over the next week or so. Now, I am doing great and wishing I could exercise more, but I know I must wait another 2 weeks. But my life is back to to normal after 10 days, no more meds for pain after about 7 days, and not sure I even needed them after 5 days. Very little pain....even from day 1. I was on my normal diet after the first day.

Dave (the recipient) is now doing great as well....so much more energy, goes out walking all the time, his GFR went from 15 to 50 in just a couple of days!!!, and his creatinine level went from 3.9 down to 1.6 in 2 days!! Unbelievable, really. HIs nephrologist call it Fabulous that the new kidney was working so well so quickly to remove his toxins that had been building up for years. he lost 22 pounds....mostly water weight that was needed to hold the toxins (my opinion) being flushed out by the new kidney. His right hip is sore due to the cutting of muscles and tendons as it hurts to put weight on that side, but it is to be expected and will go away as time goes on and the body heals. He has not had any reactions to the drugs he is taking (a lot!!), and his blood work twice a week still has been still improving. he will be receiving his first "infusion" at the clinic on June 7 and will be doing that once a month from now on....maybe every other month later on. But, it truly is a miracle that he has improved so much in such a short period of time. Fortunately, he never had to go on dialysis, as we didnt want that for him, which is why I started my donor testing early and thankfully was approved, and then it turned out we were a match even....who would have thought!?

Honestly, in terms of our situation, I would definitely say that "the bark was much worse than the bite".....as it turned out terrific and with so little pain, and Dave even left the Atlanta area after 2 weeks....they had told him to stay there for 8 weeks!

If your husband needs a kidney, try to get a living donor, as those kidneys are so much better and last longer as well. It may take some time....check with family, friends, etc. or on this site....there are people out there who can be great donors, you just have to find them. Find a good transplant center that has done a lot of them...we used Emory University Hospital in Atlanta, and I cannot say enough good words to describe the excellence of the treatment, and the quality of both the facilities and the people. 100% top notch!! If he can get a living donor before dialysis, even better, as was in our case. It was totally a wonderful experience for both of us....for me to give a priceless gift was such an emotional high I cannot even describe....and for him to receive a new lease on life rather than a slow and quicker death...was truly an amazing experience. We had so much support from our families and a lot of people praying for us....truly makes a difference.

Good luck to you...hope this helps. Be persistent and something will happen when you least expect it. Someone may surprise you someday with a kidney offer that you werent expecting. Check out the book by Ari Sytner, The Kidney Donor's Journey. Great read and well written by a donor. It changed my life.