Newly transplanted

[Ladybug_05]

Hello! I've been sharing my story on the kidney disease page, but I thought I would share here as well. I recieved a live donor transplant curtesy of my step sister on the January 8th of this year! I'm so thankful to have had this opportunity since I've had CKD since birth. So far I've had some issues with my medications and their side affects (I'm spacy/forgetful, mood swings, hot flashes, tremors and GI issues). Otherwise, I'm feeling so much better than I have in a long time, and I'm looking forward to being able to lead a much healthier life, go back to school (I'm 21 and a college student), work and move out on my own someday in the near future!

[danielleblock]

Congratulations! That is amazing! I am praying that a similar situation plays out for me - evaluation was 1/25 and the program hopes to list me on 2/6 so I can start looking for a living donor. Do you mind me asking about the side effects of the meds? Any trouble sleeping? I was on 40mg of prednisone about 17 years ago and had issues with sleeping each time we reduced the dose. Finally got off of it after 5 months. I understand that 5mg daily is standard protocol. Trying to mentally prepare myself!

[Ladybug_05 in reply to danielleblock]

Thank you! It varies from person to person, but I've had side effects such as mild insomnia, sudden energy bursts from the prednisone as well, tremors (prednisone and tacrolimus), hot flashes and mood swings that also make my anxiety and depression worse. I was also having watery stools from the mycophenylate, so I was switched to myfortic which is the extended release version. Other side effects include increased appetite/unsatiable appetite and weight gain but I haven't had those. I was started at 20mg of prednisone and by six months post transplant I'll be at the 5mg maintanance dose. Overall I'm coping well with the side effects, but I have bad days as well where I'll be an emotional wreck because I can't open my condiment jar to make a sandwich.

Good luck on your transplant journey! I hope you find a live donor as quickly as I did! I was only on the list for about a year, which is remarkably short!

[danielleblock in reply to Ladybug_05]

It sounds like you are coping like a champ! That is amazing you found a living donor after only one year! Did you ever have to go on dialysis? Best wishes as you continue to recover, and keep us all posted on your progress.

[Ladybug_05 in reply to danielleblock]

Yes I started dialysis on November 29th, 2017. I had to start emergency hemo since I went into kidney failure in a matter of weeks and my body just couldn't cope. My started on hemo with a central port and moved to PD at the beginning of 2018 until my transplant. I had just underwent evaluation when I became sick, so I wasn't even listed until dialysis started.

Due to my CKD being lifelong, I already had family members willing to be tested once I became listed. Unfortunately, it took 4 donors before my step sister was tested and came through as the best and only candidate that could donate. Everyone else was considered out of the preferred age range preference (I'm 21 turning 22, so they wanted a younger candidate) and/or not healthy enough to donate. I am very grateful that she chose to go through the process, and she was over the moon to see how well I'm doing already!

[marcyc NKF Peer Mentor NKF Ambassador in reply to danielleblock]

Hi. Not all centers automatically use Prednisone. My husband was transplanted 4 years ago, I am a donor. He has never had to take Prednisone but most of the meds have some side effects. He was on Zortress which impaired healing when of a fracture. It also caused skin issues and hair loss. Now on Tacrilimos which is known to cause tremors. All are manageable and while Transplant is not a cute it beats dialysis! Best of luck. Prayers that you find a donor soon.

[danielleblock in reply to marcyc]

Thanks, Marcy! Its a case by case decision at my center. The transplant nephrologist said I would be on it due to other autoimmune issues, but the surgeon said all things are negotiable..lol! We'll see!

[Cazzy41]

Hey Ladybug. I have just seen your post. I really hope things are going good for you. I know after transplant there is a lot of change and too much information to take in all at once so anything we can do to help you please don’t hesitate to ask. Enjoy the start of the rest of your life hunny 😊

[Ladybug_05 in reply to Cazzy41]

Thank you so much!

[guido46]

Congratulations. I'm praying that I have a similar situation as you. I've been on the transplant list since August and have had a few inquiries.

[Ladybug_05 in reply to guido46]

Thank you! I assume your inquiries are for live donation? I ran into a lot of family members wanting to donate but they were stopped in the first phase for issues they didn't know they had. It can get tough, but keeping my eyes on the goal and believing in the system is what got me through! The transplant teams are super thorough and want to keep everyone healthy! Good luck!

[PotatoeBacon]

Oh Wow that is great, was on dialysis 10yrs, just put my name on the list 2016, in June. Received my NK, Sept 5th 2016.

Just be mindful 2 take ur time, yes the meds side affects I still have, right long with the tremors, just went back to work after 10yrs, only partime, can be overwhelming at times, but ur 💪 will come back, just make sure ur taken ur meds every day on time same time, you go to all ur appts. An enjoy ur LIFE!!!!!!! AN ALWAYS BE ABLE 2 HAVE SOMEONE IN UR CORNER THAT CAN RELATE 2 WHAT UR GOING through...

Congrats🙏💜

[Ladybug_05 in reply to PotatoeBacon]

Thank you! I'm doing my best to mind my limits and allow my body to heal. It's got a lot of catching up to do and my transplant team has been very open about my recovery taking longer in some respects because of how long my body has gone without a healthy kidney. Lots of alarms are set and I also use a giant calendar to keep everything straight lol. Congrats to you as well!

[PotatoeBacon in reply to Ladybug_05]

That is WONDERFUL. An thank you🙏💜

[sujay1991]

Hello LadyBug,

Congrats on the transplant! That is awesome that you have your energy back. You are an inspiration to me. Enjoy LIFE!

[Ladybug_05 in reply to sujay1991]

Thank you!

[anne627]

Congratulations on your new kidney. It must have been hard to have kidney disease since birth. I hope your kidney lasts many years.

[Ladybug_05 in reply to anne627]

anne627,

Yes and no. It was hard in the sense that I knew I was different and there were a lot of changes that I didn't understand. I grew up pretty fast due to my disease as well, but at the same time I knew that a transplant was coming. It wasn't a secret that I had CKD and eventually would become sick enough to need a new kidney, which helped me go about my life as normal as I could for as long as I could. I got to a point where I got into an argument with my nephrologist at 14 because she didn't want me participating in any sports, including the marching band. Standards were set pretty low for me too due to assumptions of my medical issues as a whole, so it's always been important to me to prove that just because I have a chronic illness doesn't mean I couldn't lead a normal, happy and active life. It's served me well and I'm very glad that I can continue this with my new kidney!

[Hidden]

Congratulations, hope all works out for you. I hear you. I feel so much better than when I was on dialysis. God bless you.