Preemptive Kidney Transplant

[LRob0223]

I am schedule to have a preemptive transplant in just under a month. Currently I am very tired and sleep a lot. I am nausious all the time. My GFR is at 13 but I have not done any dialyisis. Can anyone share with me tips and tricks you wish you knew going into the surgery and how recovery was? Do you feel your energy levels returned to normal 6 months post surgery? I am a teacher and am concerned about when I will be able to go back to work due to energy levels and immune system health. I know I will have a compromised immune system but in your opinion, will working in a school be possible?

[gustavwind]

Dear Rob0223 - You are experiencing the effects of renal failure. I went through exactly what you are describing - including falling asleep at the dinner table on a regular basis (much to the annoyance of my partner). You should expect to recover your energy and stamina after your transplant as your healing progresses. I was "fortunate" in a sense in that my kidneys failed due to PKD, and I had no other commorbidities. My donor was one of my brothers (not a perfect match, but that is less relevant these days), and I got a pretty good kidney.

For me, recovery from the procedure took ~ 6 weeks, after which I was able to return to my office on a part-time basis. I am a retired university professor, part of which entailed running a multi-grant research program. So I returned to face-to-face interactions with my graduate students beginning at that 6-week point. Over the next couple of months, I built up my strength and returned to full-time work, teaching classes the following semester, about 6 months after my transplant. I even returned to the on-campus gym a few months later. I did hold off on travel for about a year (turning down conferences in India and Mexico, both of which looked like less than ideal destinations for the newly immunosuppressed).

If you are lucky and have no significant complications, you can expect to get back to the classroom relatively quickly. Of course, you will have to make adjustments to your lifestyle, due to the immunosuppression, but these should not affect your overall quality of life (covid-19 notwithstanding).

I wish you much success with your procedure and with your new kidney. You can look forward to returning to school - when you are ready. Enjoy your new freedom, and enjoy the students. They (most of them) are gems.

[LRob0223 in reply to gustavwind]

thank you for the response. I appreciate you taking the time to share your insights with me.

[SeaDragon05 in reply to LRob0223]

I would mimic Gustavwind. I took 30 days disability and went back to work full time. Not looking back 1.5 years later. Good luck!

[PostivelyJo]

hi, I was on the transplant list with an EGFR of 4/5 when I was transplanted. Like you I wasn’t on dialysis.

I had no date to focus on because the list is open so I never gave any thought to what if, or how might I feel. I thrived on the not knowing.

Having a possible date in the future gives you a focus on before and after and naturally you are asking questions and thinking about outcomes. This must be stressful.

My advice post transplant is to move as much as you body will allow . Your body is incredibly resilient and will heal faster the more faith you put in it. If you are naturally disciplined focus on a healthy diet and exercise as soon as you feel comfortable to do so.

immunosuppressants take some adjustment and that is a personal journey .

Trust your team, raise issues as and when , communicate. Some very good advice I was given was run your health/ medical life as a small business. This gave me huge incentive to take responsibility , to learn about my condition, to engage constructively and to confidently question my team

Be kind to yourself , the healing process is different for each individual .

The gratitude that I now feel on a daily basis has changed my outlook on life forever I was never expecting that. That’s the best part of it,

Sending positive energy .

[Seanthesheep]

Hi LRob. Great news regarding your transplant. My gfr dropped to 6 just before my transplant and I felt rough. Within 48 hours of my procedure I felt so much better.

I was fully recovered after about a month. You will have lots of blood tests (3 a week) while they sort out your meds.

No reason at all why you won’t get back to your old self in no time at all. Good luck and best wishes for the future. Sean

[LRob0223 in reply to Seanthesheep]

a gfr of 6? No wonder you were feeling rough. I can’t imagine. Thanks for replying to my post.

[Hidden]

Hi LRob. I received a transplant in August '22. The surgery was, surprisingly, kind of no big deal. There wasn't much pain and because the new kidney began functioning right away, I literally felt like I had been given a new set if batteries! It was pretty amazing. Living with a suppressed immune system is more of a challenge, at least it was for me for the first 7 months, in particular. As I have posted elsewhere, I have had c-diff twice, BK virus and CMV which landed me in hospital for 2 weeks this past winter. Presently, I remain on the lowest possible dose of immunosuppression possible. Everyone is different though. I've read some posts here where people adjust wonderfully and without incident. I guess it all depends. As a former teacher myself, I understand your concerns. I have antibodies to CMV and EBV (mono), both of which I was exposed to in the workplace. Ironically, despite prior exposure, I still had CMV. My guess is that you may have to wait and see how you progress with a suppressed immune system. I was strongly advised to be extremely careful for the first 6 months and the first 3 months, in particular. I wish you all the best with your transplant and adjustment afterwards! 😊

[LRob0223 in reply to Hidden]

thank you for your response.

[Transplant2018]

I have PKD and had a pre-emptive transplant when my GRF was 15. My primary symptom was chronic fatigue; I was exhausted and sleeping all the time. When I woke up in recovery, the fatigue was gone! It took a few weeks to fully recover, but it was wonderful to have energy and feel healthy again. My only limitation is that due to my immunosuppresants I generated no antibodies to Covid vaccines so I am still at high risk. Be certain to be fully vaccinated for everything, including vaccines you may need for future travel, prior to your transplant.

[LRob0223 in reply to Transplant2018]

thank you!

[Eyak1971]

Any surgery has a recovery time. Depending on your health at the time of surgery will be a major determining factor. However you may experience a uptick since your kidneys were not working well. Many experience a boost with their new kidney. Your doctor would be good resource for your questions since he or she has more info. On your health history. Covid has definitely changed the work environment. After I retired I was going to do substitute teaching but covid hit when I had my transplant. I have not worked the past 3 years for fear of contact with others who may have covid. Many do not have a choice and many have overcome the fear and have continued working with precautions. Having a history of getting student's illnesses while teaching, I have been hesitant about returning to the classroom. Some parents are notorious for sending sick kids to school rather than keep them at home. I may eventually return but I am looking at other options of part time employment . It's hard to buffer oneself from any illness but with good hygiene and precautions, I am sure you may find a way to be in the classroom. Teachers are needed more than ever at least on the US and I am sure in Canada as well. Take care and wishing you the best. Note- you may find the medication you have to take after transplant a problem so do your research and ask questions on side effects.

[LRob0223 in reply to Eyak1971]

thank you for taking the time to reply to my post.

[6V53]

Comfortable pants! I took jeans to surgery and didn't wear them for months. I ended up wearing Jammie pants post surgery (my surgery was 1500 miles from home). I then started wearing khakis. I also stopped wearing a belt and switched to suspenders. The belt puts constant pressure on the incision site.

The first 2 days after surgery were not much fun, but very manageable. I had a morphine button and never used it. I was discharged on day three. I walked every day. After about a week I was wanting to walk farther than my wife. I should mention that I noticed that I had overdone things differently than before surgery. Before surgery I'd get tired walking from the car to the store and need to sit down, I felt it right away. After surgery I wouldn't notice until the next day, so I had to be specific about how far I would walk in a day and plan rest breaks because I wouldn't feel it then.

I am currently recovering from CMV and fortunately we caught it quick and it hasn't been to bad. It just seems to take a lot longer than the colds and flush I was used to. Also longer than when I had covid.

Good luck on your kidney and new life.

[LRob0223 in reply to 6V53]

comfy pants have been purchased:). Thank you for the post.

[Alfredmynewkidney]

I had a transplant 3 years ago. Before dialysis in the beginning of COVID. I'm a nurse and returned to work full time after my 12 weeks of FMLA. Physically I could have definitely returned in 8 weeks. But because of COVID my transplant team wanted me out as long as possible. I'm careful. Lots of handwashing. Keeping my hands away from my face. I've not had any big complications and continue to work full-time. I would try to add walking to your routine. The less I move the less I want to. It's a vicious circle. Try to do just a little more each day. Your energy will return. Good luck!!

[hope1419 in reply to Alfredmynewkidney]

Oh I admire you! Returning to work as a nurse in the middle of Covid and being immunosuppressed! And, I am worried about returning to teaching! I hope you are doing well!

[Alfredmynewkidney in reply to hope1419]

Thanks. I don't feel amazing. Just living life. I feel better after the transplant so that is helpful. ❤️

[LRob0223 in reply to Alfredmynewkidney]

you are amazing. I agree with hope1419.

[MrChan]

I got a transplant with a gfr of approximately 13. I was on the list for over 5 years and the call came. I was never on dialysis. I felt ok still traveling for work, occasionally working out, eating a mostly plant based diet. Post transplant , I’m just over 6 months. My energy is still low even though my hemoglobin and all other labs are normal. I have lupus so I am assuming that is causing the fatigue. I returned to work at 3 months and while it was fine. I could have used another month. I would say listen to your body. First 3 months, I stayed away from people, work a mask with everyone besides my husband and kids. I still to this day were masks in stores, in my office, around people I don’t know. I think you can go back to school you will just have to be mindful of wearing a mask, hand washing . I have hand sanitizer everywhere and am constantly hand washing. I also don’t hug people orb than my husband kids0-rents and siblings. HTH.

[LRob0223 in reply to MrChan]

thank you for your reply.

[hope1419]

Hey Rob, I am also a teacher and ai had my kidney transplant 4 1/2 months agom i was in GFR 13 for about 3 years. I starte feeling more tired ans slept a lot after school. The day of the transplant my GFR was under 10. Last week test showed it was 60! Check out my posts about my experience. I think they'll answer a lot of your questions. I bet you had similar doubts. As I did.What can I tell you! Preemtivr transplant is rhe best you can get. My new kidney was without bood flow only 45 minutes. It worked right away. It worked So well that it caused me to loose 10 lbs of retaines liquids I had in my body. My family says my skin color changed. My GFR fluctuates between 52 and 60... I was surprised by the amount of pills I had to take. I also was expecting a smaller incision, and my electrolytes went crazy... but hey, those are minor issues compared to what others experience. I was out of the hospital in 3 days. I had to go to the bathroom about every two hours. That was tough because I had to get up and that hurt... I also needed my caregivers to help me a lot. The first couple of weeks. It is a chore to keep up with your vitals and meds, but that is what you do in the time they give you off work.

I live f a r away from my center, so I needed to stay away from my house for about a month until my electrolytes were under control.

I had a ton of questions I made a list for my dr before transplant. You should do that.

I start working back at school tomorrow. I am a little nervous because of the inmunosuppresion, and my interactions with the kid, but I plan to wear masks. My dr says that many teachers have been back to work successfully. I am worried about infections, but I prepares by getting all my vaccines pre- transplant. So far I have just had one UTI and it was caused by contamination due to ecoli. I started eating out, but have in mind what I can or cannot eat. And I am drinking between 2 and 3 liters of water a day!

Contact.me if you have any specific questions. I will answer if I can help. I am in the south of the US, though.

[LRob0223 in reply to hope1419]

thank you so much!!!

[LRob0223 in reply to hope1419]

Please let me know how your return to school goes. I have been off work for almost a year and a half because of energy levels and am eager but nervous to return.

[jesselizzard]

Hi LRob - I also have PKD and had a very low GFR and was preparing for dialysis, when my close friend gave me her kidney 6 months ago. Once you have the transplant you will be closely monitored and given huge doses of immunosuppressive drugs to prevent rejection. Once you are stable, you and your doctor will agree on when you are ready to go home, then the healing really begins. You will be visiting the hospital 2 or 3 times a week for about 3 months and then continue with weekly blood and urine testing. After 6 months you go to monthly testing if your levels are in the required range. I did travel by plane to Idaho after 4 months to attend a wedding. I was fine and didn’t catch any infections. I go to the gym about 5 times a week and workout some of the time with a trainer. I am getting stronger everyday. Just do whatever the transplant teams tells you and you will be fine. I am feeling much better now that 6 months have passed. Each month it gets a little better. Make sure you are up to teaching before you go back full time. You body is getting adjusted to your new kidney and I was told 1 year is the turning point. Good luck! Let us know how you are doing after your transplant.

[LRob0223 in reply to jesselizzard]

thank you for taking the time to reply to me. I will for sure let you know how things turn out.

[hope1419 in reply to jesselizzard]

I have a question about going to the gym? Is it safe going to a gym being immunosuppressed? Do you do you follow a special routine about what equipment to use, how to clean them, etc. Any incidents ? When did you stat to go?

[jesselizzard in reply to hope1419]

Hi Hope - I started going back to the gym about 4 weeks after my transplant just to walk on the treadmill. I wore a mask the first few weeks and of course sanitized the equipment. I started on the treadmill and kept my distance from others. I wasn’t allowed to lift weights until after 3 months so I started lifting lighter weights. I don’t wear a mask any longer and make sure to sanitize the equipment and wash my hands. I try to go the gym when it isn’t so crowded but that isn’t always the case. I have not been sick since my transplant and even traveled on planes in May with no issues. I do keep getting UTI’s since my transplant and now waiting to speak to my infectious disease doctor about a course of action to end this cycle. Otherwise, I feel great and I’m off to the gym now. Thanks for your question.

[jesselizzard]

You’re welcome. It will be worth it!

[BulldogFan]

Hi, my daughter was never on dialysis as we helped her with an extremely strict diet for over the past three years. Her GFR was at 10 this time but never got lower. She lacked energy but was totally positive. She had her transplant about 11 months ago and she's doing great. Much more energy. She is back at school every day. She does well with her anti-rejection meds and we take them like clockwork. I can't remember the last time she was sick, either before or after transplant. We credit her positive attitude with boosting her immune system. Good luck and we hope the best for you.

[LRob0223 in reply to BulldogFan]

thank you for your post. I have talked to my transplant team and they have ensured me that going back to work will be possible

[TeacherMommy]

hello! I teach 7th-9th grades (ages 12-15) and have an elementary aged son. I had a transplant end of August ‘22 (about 11 months ago). Similar numbers and symptoms as those you described. No dialysis. Living donor.

I was on medical leave for 4 months. The original plan was 3 months. because I was able to get the bivalent covid vaccine at 3 months, the team recommended I stay out another month if possible to hopefully make some antibodies.

I wore masks at school (my son also wore a mask at school, and my husband did in public places) until May. I did and do wash my hands a lot. I also tried to keep some distance between myself and students if sitting in a class for a while. I know how our air exchange system works and often sat where the fresh air comes in if possible. I ate lunch outside rather than take off my mask with students and colleagues.

In May I just couldn’t stand trying to teach with a mask on any more (I had been wearing a mask for 3 years in school); it was too hard to communicate, especially when directing a play this spring.

I was really nervous about going back to school, mostly in terms of germs. The students were very sweet and understanding. We cook together at school and I didn’t eat anything we cooked this year. I also bring boiled water because we have well water at home and at school. I have to take meds 4 times per day because I take magnesium which needs to be separated out from the immunosuppressants. This means that my medication reminder alarm went off during classes. I was very open with the students and encouraged them to ask questions. They have been very supportive.

Despite being extremely careful, I got covid before transplant (delaying transplant for 3 months) and again in March (7 months post). The second time was much easier to get through - either because of antibodies, the strain I got, or that my body was so much stronger after transplant. Getting through covid well made me less fearful of getting sick from the students. Ironically, I am pretty sure I got both covid and strep throat this spring away from school, not in the classroom.

I absolutely echo walking, stretchy pants!, patience with yourself, lots of water, time to manage your meds and appointments. It was a good thing for me to go back to teaching because of the routine and relationships. It took my mind off some of the worries I had, kept me from getting depressed, and kept me moving. However, I got less exercise after going back because I didn’t have time for long walks. I was tired readjusting to teaching, but my stamina increased gradually. Plus, as you said, I had been exhausted for the years prior to transplant so it was better by comparison.

Overall I am glad I went back to the classroom and glad I took 4 months off first to heal and to adjust. I am wishing you full healing and manageable emotions during this process. ❤️

[LRob0223 in reply to TeacherMommy]

thank you so much for sharing your story with me.

[TeacherMommy in reply to LRob0223]

you are welcome. I hope some of it is useful to you. 😊

[Asertfev]

Renal failure is hard, I remember it. I felt really tired, all the time, and I was really pale and lost loads of weight.

my biggest advice would be to make sure this is really what you want. Don’t do it for other people, and don’t let other people pressure you into things.

I am in the UK for context. I had a kidney transplant, I’m less than thrilled with the experience for all different reasons, but that’s another topic. On the topic of immunosuppression I do not change my lifestyle at all, I am pretty much infection free, have been for the last two years. Having said that I am very young for this forum, and am otherwise completely healthy. If you are concerned, then N95 masks may help. I would keep a small supply in case you have to go to A and E for any reason, lots of sick people together, it’s not great for immune compromised people, but it is what it is.

keep a list of all medication and doses, on your phone, and a paper copy.

Your doctor will give you a document showing the markers for compatibility of your kidney. Keep a photo of that document on your phone in case your new transplant rejects far away from your usual place of treatment, record keeping between hospitals is dodgy.

After you get your transplant, you will have lots of blood tests. Make sure you know what your transplant creatinine is, it is important if anything goes wrong anywhere other than your usual hospital. Then they can measure the current creatinine against your baseline.

You will have lots of meds, I have bought two pill boxes, and I fill up a month’s worth of meds at a time. This makes it easier to tell the hospital what you are running out of. Buy the pill boxes with 7 boxes, Keep one in every jacket you use in case of emergency.

If you live alone, I would cook lots of healthy meals in advance and freeze them, you won’t be doing much the first week after. Buy multiple water bottles, keep a water bottle in every bag you use. It might not happen, but people have reported liking/disliking different food post transplant. I wouldn’t panic if that happens.

My recovery was fine, I moved out and went more than three hours drive away for uni three weeks after transplant. Studying architecture. The transplant team thought I was nuts. It wasn’t exactly recommended in the middle of covid, but I was fine. The transplant team managed to sort out transferring me with fairly minimal notice too. They coped. We all mostly survived. You will have lots of appointments to schedule around work to begin with fyi. You need to attend them, but I found my team fairly accommodating. I live in Oxford though. If you are a doctor in Oxford, you just have to accept that more than average of your patients are gonna be students with crazy schedules and not much perspective when it comes to studying. It is what it is there. Thankfully the Oxford renal outpatients is a decent size. Oxford is generally crazy, but that’s going off topic.

expect to be doing insane amounts of weeing the first few days post transplant. I was on the toilet almost once per hour. I would forget about bottoms or underwear.

I hope some of this is helpful.

All the best.

[LRob0223 in reply to Asertfev]

Thank you so much.

[Camppy3]

I am a little over a year transplant, I was pretty good within 6 months. It took me 6 wks. after to feel myself after. They will probably want you to wear a mask for awhile after. It depends if you could teach, elementary kids seem to get sick often, I was in special needs classes as an aide and some classes I would get the things the kids would ( way before surgery).

[LRob0223]

thank you. The drs have assured me I will be able to go back to work.