Taking some time.

[Ladybug_05]

Hey all, I feel really connected to this community- it's given me an outlet for information and invaluable support throughout my time on dialysis, and now post transplant. There are some things that I'm just now realizing that I was told at the hospital, such as drains are horrible and always leak, the first shower isn't as glorious as you will hope it to be (I mean I'm clean, but it burned like nobody's business), and side affects to medication will dominate my life for a while. I also can't feel half of my stomach, since the surgeons had to cut major nerves to get the kidney into place, and they may grow back in 6 months, a year, or not at all. It's having to deal with pain because the pain medication does nothing to relieve it anyways, so why bother.

It's the little things that are getting to me the most- such as having tremors to the point where half of my food ends up in my lap, having hot flashes with no relief for hours and having to wear a mask every time I leave the comfort of my house. I haven't hugged or kissed my boyfriend in almost a week, but I can hold his hand as much as I need to. It's refusing everyone's help that isn't family because, although they mean well, they have no idea how to cook for you and you aren't acclimated to them anyways. I look into the mirror, and although I look a lot better than I did, I still have a long way to go. If I don't post or reply for a while, please know that I will be thinking of all of you; but I need some time to figure out this new normal. Transplant may be a wonderous thing, but you have to be down before you can get up.

[greatest]

Praying for you on your journey as you take the path up. Sally

[Socky]

Keeping you in my Prayers. Sending you lots of Strength and Patience. 🙏🏽🙏🏽🙏🏽

[Bunkin]

I’m praying for you Ladybug❤️

[Bassetmommer NKF Ambassador]

Sending you a big hug Ladybug. You are an inspiration. I hope you keep writing us and telling us of your journey. It is the best teacher when a patient shares their experience.

Blessing.

[Bet117 NKF Ambassador]

Sending you heartfelt prayers and healing thoughts, Ladybug.

Bet 🙏🙏

[Frankie24]

Nice to hear from you, Sending thoughts and prayers for a speedy healing.

[lowraind]

Hope things get better and that your new normal is best!

[Zazzel]

Sending prayers and positive vibes your way for a quick road to recovery.

[WYOAnne NKF Ambassador]

You need to let your transplant team know about the side effects, especially the tremors. My dose of one of my immunosuppressants was reduced because of it and my tremors disappeared. Part of what you talk about will get better tomorrow and the next day and the day after that. Just remember the meds are not without side effects and some are due to taking too high a dose. I remember my dose was reduced several times that fist 3 months till the dose was right for me.

Keep the faith!

It will get better! I am 19+ post transplant and we are planning a 2-week trip to Europe. I hardly remember that I had a transplant except for all of the meds and quarterly labs. Life is good!

[Ladybug_05 in reply to WYOAnne]

Hello WYOAnne,

I actually started having side affects within 24-36 hours of starting the new medication regimen, so the docs were aware from the get-go. I also had my first clinic this week, and due to my low levels they are not able to start the process of lowering the immunosuppressants until I reach their target range. As of now, I am tested twice a week, and we're hoping to taper as soon as we are able to! I start tapering the prednisone after one month, and the side affects that I'm having are common for post transplant, so the team is confident that once my body adjusts and I'm at least a month out, the side affects should start becoming less. For the time being, I have people helping me out with everything, and I make sure to wear a bib when I eat (my tremors cause me to drop a lot of my food into my lap) haha.

[Ladybug_05]

Thank you everyone! My first week has passed, and my drain was removed yesterday! My pain level is much less with it out now, so now it's just taking my meds on time and making sure that I keep on my new routine! Life is slowly looking up!

[WYOAnne NKF Ambassador]

What immunosuppressants are you taking ? besides the prednisone? It does take your body awhile to adjust to the meds. I take myfortic and neural - still do and have since day one. I had heartburn and diarrhea issues for the first few months.

So how is your creatinine?

So happy that this finally happened for you. Even after 19 years my creatinine is very stable at 0.9.

Keep us posted on your journey!

[Ladybug_05 in reply to WYOAnne]

I'm taking tacrolimus, prednisone and Mycophenylate. My creatine as of my last blood draw was in the 0.9 range!

[WYOAnne NKF Ambassador in reply to Ladybug_05]

Way to go! Your friend gave you a great kidney!!!! Maybe we should start the 0.9 Club?

The Myfortic I take is the name brand for Mycophenylate.

[Ladybug_05 in reply to WYOAnne]

Maybe yeah! My donor is my step-sister, so I know that I was gonna get a great kidney and it has exceeded expectations! I guess myfortic/mycophenylate is super common then?