Feeling Isolated

[Pc3661]

I would like to be able to connect with people for reassurance to know I am OK. To know the feelings I am experiencing are normal. I am 5 weeks post op and these medications are brutal . The side affects such as nausea, vomiting, the runs, itching, ...omg! Then there's the trembling hands and weak feelings in my legs. And let's not forget the nuropathy in my feet is even more than before the transplant. These things are all difficult to talk to friends about. They want to hear how well I am doing, I.e. positive news, not what I am truly experiencing. I need a community.

[LisaSnow]

Warm welcome to you and congratulations! Everything you are feeling physically and emotionally is normal at this time,when your body is still learning a new (and better!) setup. The body has its own intelligence but needs time to adjust to a new working order. You can help it to become optimized by giving it much needed rest (good sleep) and care (walking and balance nutrition). All medications have numerous effects and some effects (side effects) are not always welcome. Fortunately our body is smart enough to "get used to them" over time so they won't bother you after a while. Furthermore, the tapering of doses is a standard protocol within the first year. You will only continue to feel less and less of the unwanted side effects as time goes on. Please be patient with yourself and your body. Allow a good cry to let out frustrations but also give yourself big hugs several times a day. You did a great thing by accepting a gift to help your body function well again. Know that the hard part is temporary. Be patient and start walking daily. Even a five minutes walk a day is enough to speed up recovery SIGNIFICANTLY.

[Hidden]

Congrats on new kidney 😀. That being said, I had quite a few side affects from meds for several months after transplant. For example, I had diarrhea for three consecutive months. Definitely, had some shaking of the hands while on pretty high dose of TAC. I’m not on a steroid so no side effects there. Lower than normal BP caused light headedness — most likely cause from dehydration from diarrhea. Yikes!

Keep a list and share with your care team is the best bet.

[Live_Positive]

Very encouraging reply - Lisa !!!!

[PostivelyJo]

Such early days. LisaSnow gives great advice . Take it slowly , day by day. We are all here to support you .Congratulations and well done

Jo

[Rmatthew]

I had also felt the same during my recovery last year, I also had a lot of shaking, but it really does get better!

[Eyak1971]

All who responded have given you great advice. Things will get better and welcome.

[WYOAnne NKF Ambassador]

Congrats on your kidney! You have got the community here that will support you in your kidney journey. You are only 5 weeks out and your body has to adjust to your new medications. Yes these can be somewhat brutal at times. I had horrible GI issues and I told my transplant team. They made sure that nothing else was going on that would cause my issues, and lowered my dose several times that first year. It does take awhile to adjust to these new meds. I was on antibiotics those first 3 months and those can also cause these issues.My doctor told me that I should start walking for exercise. Every afternoon I started walking slowly around my block. After a week it was going well, so I increased my walk and by a month out I was walking for 30 minutes everyday. It even helped with some of the side effects. By 8 months post transplant my husband and I met friends in Glacier National Park in Montana and hiked the Hidden Lake trail down to the lake. My tremors were gone, no more nausea or diarrhea.

I know those first couple of months can be frustrating. Remember too, you are recovering from major surgery and due to your immunosuppressants you are healing more slowly than normal. Please know we have all "been there, and done that," and there is a light at the end of the tunnel...and it is LIFE. You will get your life back!

After a year I went back to work full time and had a wonderful career in Gerontology. I am now almost 22 years post transplant and living well by my beloved Rocky Mountains in Wyoming!

Take care, and know that this too shall pass!

[Djangosmom]

Welcome and congratulations on your transplant! I am exactly one year post-transplant, I received a deceased donor organ after 3 years of waiting. Unfortunately, the whole thing happened at the height of the first Covid surge, before any vaccinations were approved. I was so worried about being in the hospital for 19 days after transplant! My team told me that if I contracted Covid, it would probably kill me! Comforting. I’m lucky the hospital I was in kept all Covid patients isolated on one floor of the hospital which was inaccessible to everyone except medical personnel. I went through the transplant and recovery all alone because they weren’t allowing visitors. Then the side effects started: kidney was slow to “wake up” and I had to have hemodialysis twice while still in the hospital, I had the most agonizing spell of restless legs that was MUCH worse than the post-surgical pain….it made me literally cry out for my mama (I’m 64 and Mom is deceased)! They had to give me Ativan and Gabapentin to get that under control. Then came the uncontrollable diarrhea from mycophenelate scalding and ulcerating my colon. I literally couldn’t make it 8 feet to the toilet and had to be put in diapers! I went home with this colon injury and couldn’t eat solid food for 6 weeks. I lived on protein milkshakes and Ensure. I lost 30 pounds and was weak as a kitten. I got a blood clot in my left leg which went into my left lung. When I started the drug infusions, my hair started falling out-in clumps. Oh! I almost forgot about the incisional hernia the size of my hand which still needs to be fixed, but I am not willing to go to the hospital with the current Covid variant running rampant. I’m telling you all of this to contrast my quality of life at one year out. My team has finally gotten my BP under control, my anti-immunity oral meds regulated, and I am feeling pretty darned good! I had all my hair buzzed off and I don’t think it will ever come back as long as I’m receiving these drugs, bit it’s all a small price to pay to NOT have to do PD every night any more! I can travel again and my hubby and I just bought an RV that we’re fixing up so we can go South for the winter! When I was still on PD, I was short of breath and had absolutely no energy or stamina. I wanted to sleep ALL the time. That is all GONE! I feel like myself again! My hair maybe gone, but the bright side is I haven’t had to shave my legs for a year! Hang in there, honey. The first year is a bi&$#, but it DOES get better. Have faith in your team and have patience with your body….it’s been through a LOT. Keep in touch and let me know how you’re doing. Stay well and BE CAREFUL. ✌️

[josie120]

Yes ,things get better with time and support. One hears this a lot and for the first 4 months I did not believe it because that was not my experience. One thing would get better and a new issue would pop up and send me reeling and that anyone who said things get better was not being honest about how hard the early post transplant period was.

Now I'm 7 months post transplant and with all the "set back experience" I learned that it not that the set backs happen it's how I deal with them or let them affect me that matters.

I really have to focus on something positive (the 3 Good Things method helped) to keep me from falling apart. I also try take things a day (or sometimes 30 minutes) at a time to when I feel myself getting overwhelmed. These 2 things have been the most helpful for me.