how long after transplant did you feel better?

[Mydaughtermyhero]

I’m a little more than 3 weeks post transplant and still not feeling up to doing much of anything. My surgical site is healing well but very tender and swollen. I’m curious if the new kidney will always be a visible lump on my abdomen. This came as a surprise to me.

[Ahmad_92]

Congratulations on your transplant

For me first 3 weeks i couldn't do ppmuch more than walking around my house

After 3 months i strated working from home 3 weeks after transplant

Get back to office work after 6 weeks

Where i was doing well but still at the end of the day feel tired

After week number 14 i did my first business trip to another country, at that time i was very scary that i might cought flu or covid also was first time i feel pain over my transportation area that made me very scarred,

On month 06 that was the checkpoint for me to feel very energetic, every thing stated to change very fast for better,

Now on month 13 and thankfully every thing stable

[Mydaughtermyhero in reply to Ahmad_92]

Thank you for your reply. It is very encouraging to hear the timeline for your recovery. I know I need to be patient and appreciate each small improvement. I do not have to go back to a job but I do want to travel without feeling afraid of something going wrong, catching something.

[wheezoids21]

Congratulations! Oct 9 will mark 2 months from transplant for me. The first 6 weeks I was in a huge amount of pain because I think the surgical drain was rubbing a nerve. And I had several nasty uti's. After the drain came out at week 5 and I started on gabapentin for the nerve pain things started to gradually get better. On oct 2 I start back at work part time....not full time as my work is very labour intensive, and I am still quite tired and the nerve pain still flares up if i do too much. I am hoping that things will have improved a.lot by month 3. My kidney is a big lump too and i was wondering the same thing. Im so afraid of bumping into something and damaging it. Im fairly slim so I wonder if it would be less obvious if i were a bit heavier.....not much to bury it in lol. I am told others pain heals much faster so maybe im not a good example.

[Mydaughtermyhero in reply to wheezoids21]

Thanks for your reply and congratulations on your transplant too! I didn’t have a surgical drain, that must have been difficult to deal with. I came home from the hospital with UTI that went untreated for a week and then took two different antibiotics to get it, it’s only been two days since I finished the antibiotics so hopefully it’s truly gone. My Transplant nurse practitioner said some slimmer people do have a visible lump where the kidney is. I was joking about if I’d known I would have had them take out my uterus to make room, I don’t need it anymore 😂

I’m pushing myself to do more each day than I feel like. Do you think the gabapentin helps with the pain? My pain is worse when I sit upright in a chair too long and in the evening.

I’m experiencing some depression symptoms which has taken me by surprise since I’ve been set free from dialysis. I’m wondering if it’s a side effect of all the medications. I will talk to my doctor at the next appointment if the symptoms don’t improve.

[wheezoids21 in reply to Mydaughtermyhero]

Hi. I feel that the gabapentin is working, although very slowly. I can actually sleep on my side now which is how i usually sleep. Still waking up every 45 mins though but dont know why. I also had antibiotic resistant uti....in the end Infectious Diseases was called in and they recommended i have a central line installed and high dose antibiotics (that theyd chosen for the strain of e coli i had) pumped in every day. I did this at home myself, which was quite an adventure. Give yourself a break on the depression...youre going through a lot and it is difficult to be in pain for such a long time. Once your life starts to normalise things will become easier. I felt the same way...totally at the point of despair.. Hang in there, you're doing great!

[Mydaughtermyhero in reply to wheezoids21]

Okay woke up today with UTI symptoms back! Went straight to lab for urine culture now waiting for results and so uncomfortable. How long did it take to finally get rid of your infection with the IV treatment?

My infection is not ecoli but Enterococcus Faecalis, so may be even harder to kill. I just don’t want anything to jeopardize my new kidney.

[wheezoids21 in reply to Mydaughtermyhero]

I was given 2 weeks worth, one shot per day. The rationale was that the antibiotic tablets i had been given worked superficially by swimming around my bladder so didnt reach deep into the tissue where i suspect the bug was sitting at low levels. The super uber dose finished it off once and for all. It's been 3 weeks since the last uti and no sign of reappearance yet. Think that did it. Ask them to talk to Infectious Diseases people....they were the ones who worked it out for me.

[littlelinda50 in reply to Mydaughtermyhero]

If you keep getting UTIs ask about taking a preventative antibiotic. I take one every night to help prevent UTIs because I kept getting them and it really has made a big difference.

[Palmtreeguy]

My first 6 months were very hard - including 2 bouts of sepsis and an incisional hernia repair.. Blood pressure needed a lot of adjusting, as did some meds. almost 6 months to the day, I started feeling much better and it has been a good ride for the next 18 months.

[Mydaughtermyhero in reply to Palmtreeguy]

Thanks for the encouraging words. I’m also interested to hear that you were able to overcome sepsis and hernia repair and still feel good at the 6 month mark. I’m battling a UTI that has so far survived 2 different antibiotics. Waiting to hear what’s next. Hopefully I’ll turn a corner soon.

[WYOAnne NKF Ambassador]

Congrats on your transplant!

When I was a month out I "made" myself start walking outside. At first it was just around the block, then gradually more. I started walking every other day. When I started moving I started to feel better and get some of my energy back. Because of the steroids and your body healing after major surgery and lets not forget your immunosuppressants...it takes awhile to feel like your old self. Your healing more slowly because of all of your meds. Your kidney bump should gradually go away. Mine did.

My transplant was October 15, 1999 - ya, almost 24 years ago now. 9 months out I was hiking in Glacier National Park. 2002 we took a two week trip to Germany and Austria.

Remember not to overdo it. I developed an incisional hernia in my transplant scar. It took surgery twice to get it all healed.

Take care and know that things will get better!

[Mydaughtermyhero in reply to WYOAnne]

Thanks for sharing your very encouraging story. I know it will take time and I need to look at each day that I’m not at dialysis as a precious gift.

[GardnerADK]

Hello and a good question. Everyone is very different in how they feel. My husband received his kidney transplant late Nov 2018 and the first 14 months he had alot of problems that zapped his energy in a big way. I would say after two months he could drive himself to his blood labs and do light grocery shopping for a few things. For him he did not do outside chores like using the rider lawn mower or snow blower for over 18 months, I did it. Don't let this alarm you, but everyone is different. It is almost 5 years and he had more energy before his transplant than he does now and he just turned 64. He was a very active person prior to his transplant, never on dialysis; but he is a cancer survivor 30 yrs prior. Just be patient with your body , listen to it closely. I wish you all the best.

[Mydaughtermyhero in reply to GardnerADK]

Thanks for sharing your husband’s story. I am looking forward to being able to drive and do some small errands on my own. It seems many people on this site have experienced some sort of setback early on. I’m battling a UTI that is back after finishing antibiotics. I think I came home from the hospital with it.

I would say most people feel less energetic at 64 than they did at 59. My husband has taken on much of the chores that used to be mine. I look forward to taking some of them back when I’m fully recovered. He is 69 and a high energy person but would be the first to admit he can’t do many of the things he could 10 years ago.

I will take your advice about being patient with and listening to my body. Have a blessed day😊

[GardnerADK in reply to Mydaughtermyhero]

My husband inherited PKD "polycystic kidney disease" from his mom and we did not know he has it until his cancer cat scans at age 30. It took over 30 yrs before his kidneys were at a low filtration rate needing dialysis or a transplant. His oldest brother had the same PKD and got his transplant from his wife , but that was 20 yrs ago and the meds he took and doses were very different than what my spouse takes, it is less meds. His brother could return to work at age 57 and my spouse would not have been able to do that at age 59. Everyone is different and I've been reading this blog website since May 2019 and rarely find anyone having problems long lasting like my spouse has experienced. I expect the first 6 to 12 months having problems minor or major, but for my husband he questions if this was the right choice for him. We both have been high energy and I'm 64 and have not slowed down alot yet. Just be patient with yourself and follow the doctors orders or call them when something seems not right. Take care.

[AENEASavc]

Be patient. Recovery is a journey. 3 weeks is a very, very brief amount of time. Give yourself time to get better.

[Jamok]

Hi,

At three weeks out, I was still pretty weak and my incision site which was sort of numb in the beginning, started to feel a bit more sensitivity due to nerves coming back to life! I had a lot of issues with stomach cramping from Myfortic as well as mouth ulcers, but a switch to Sirolimus at 5 months has made a big difference in my energy and state of mind. At 6 1/2 months out, I’m starting to feel like my old pre-CKD self again. One thing to remember is your body is adjusting to not only antirejection meds and the shock of surgery but also all your body systems were compensating for failing kidneys and need time to revert back to normal function. Anemia also starts to resolve which really added to my energy level. If you had high parathyroid hormone due to failure, that starts to revert, but it all takes time. And yes, I do go through the blues here and there, but like everything else mental health is affected by kidney disease as well and you’ve been through a lot and it takes time to process everything. Give yourself Grace and patience to recover at your own pace.

[Winner76]

Hi,

Congratulations on your new kidney. You have to go easy on yourself. It’s only 3 weeks , it will take some time to heal and get stronger and your body to adjust to medication. You’ll get there but don’t rush it.

Best wishes

Tina

[Parkerbarker]

Truthfully a whole year with many meds adjustments and a couple of illness setbacks due to having such a low immune system from the antirejection drugs.Times were really bad and alot of one step forward 2 back and worrying about rejection and stuff but this is completely normal and after a year I'm finally getting my energy and life back.They really dont tell you what to expect really and you think "oh got my transplant and in a couple months i will be raring to go" Nope! Also yeah my side still sticks out where my new kidney is but it is what it is.Better then that ugly permcath sticking out of my chest restricting me from swimming and baths.Lastly prepare for hair loss and thin skin but you adjust and the meds can give you mood swings and depression.This too is normal and happens less ass meds are adjusted down.Any questions feel free to ask.

[Mydaughtermyhero in reply to Parkerbarker]

I guess I was hoping to feel raring to go after the 6 weeks recovery from surgery. I’m sure all the meds are zapping my energy but my blood work all looks good according to the doctors. I’ve been on prednisone for 45 years and took Cellcept for 20 years prior to this to treat lupus which caused my kidney disease. So I already have the thin skin. I went through some significant hair loss while on dialysis. Started putting collagen powder in my coffee and taking biotin and everything seems to have improved. My kidney disease was under control until Covid vaccine then everything went downhill pretty fast. I’m so grateful not to be on dialysis anymore thanks to my amazing daughter giving me a kidney. I thank God multiple times a day for this amazing blessing. I appreciate your reply and description of what I might expect. Glad to have found this group.

[Parkerbarker]

Yeah my bloodwork was good too except when i contracted covid,cmv,cdiff,covid again(i was vaccinated 3 times too) cpo and another i cant remember but yeah the tiredness was brutal, but now slowly but surely my energy back.i still have a day every once in awhile that im like ok today is do nothing day but i will usually putter a bit around but sooo much better.i took biotin/coolegin and still hair was losing and remaining like straw so i finally thought screw it im shaving it all off and I love it and gotten many compliments too and i love not having to mess with my hair but it always was fine and straight but had lots but yeah wake up hair perfect,rain hair perfect,wind no worries,wearing a motorcycle helmet,no flat head im never going back and i bought about 5 cute conductor caps if i feel like changing it up.I never thought i could pull it off as i thought my head too flat as any hats except conductor caps looked awful on me but it worked!