Transplanted.

[Fsgs57]

I was transplant yesterday at the Mayo Clinic in Arizona. I was on dialysis for two years and fully active list for two months. This came quickly I had the rollercoaster of emotions. I had a lot support from 👪 and friends. The Mayo Medical team top notch. Now I have the road to recovery. I will prevail and the best is yet to come lol.

[Bassetmommer]

Congratulations and take care of yourself. If you find you are having some issues dealing with survivor's guilt, find a mentor to help you.

[Blue-Quilter]

First, congrats on getting transplanted! The recovery is often not the walk in the park you may have expected, but you WILL heal and feel better in time. Run everything by your team before starting anything new. That includes OTC meds, foods that used to be off limits, even exercise. Walking (more like strolling along) is probably okay, and likely will speed the healing process, but check with your team as far as distance and speed goes. Even something as simple as stairs should be discussed before you are released.

You'll hear this from everybody and their brother, but take your meds religiously on schedule!!! Set an alarm, 12 hours apart, on your phone. Hit the snooze if you don't have your meds in a pocket. Don't turn the alarm off until you have taken your meds!

If you don't have a Bucket List, make one! You've been given a tremendous gift, enjoy it. Do the things you've wanted to do but were too sick to enjoy. Tell your tribe that you love them. Remember to call on them if/when you need help. Be sure to thank your donor (if living) or their family (if deceased). I waited until a year post-transplant to contact my donor's family thru my transplant center. I wanted to share with them the difference their gift meant to me. Be grateful for each day Live your best life!

P.S. I too have FSGS, hereditary variety, which 5 of my 6 siblings got as well. The one who didn't get it had ovarian cancer and died at age 61. I think our chances are better!

[Beachgirl32]

my cousin had her transplant at Mayo in Arizona she said they were awesome there just wanted to say congratulations on your gift and just do all you are suppose to do . Hopefully one day I will get to share the same news . It such an awesome gift to received to me it one of the miracles in life that an organ can be shared .

[WYOAnne NKF Ambassador]

Congratulations on your transplant!!

Make sure you tell your transplant team if you have any issues. They are there to help you get on the right dose for you of your meds. I know I had mine adjusted several times that first year. I am 24+ years post-transplant from a 16 year old deceased donor. If you ever have any questions...I am not an expert, but can answer from my own perspective.

Take care!

[Darlenia]

Wonderful news! We, too, were caught a bit unprepared when we received "the call". If your transplant starts out a bit shaky, it will highly likely likely settle down quite soon. Congratulations on receiving that amazing "gift"!

[ShyeLoverDoctor]

I started my Mayo evaluation in December 2022, was added to their list April 28, and received a cadeaver donor on June 11, 2023. Before that I was on dialysis for 11 months and 3 weeks. Mayo is the best!

Please, please report any out of the ordinary symptoms to your team. I was feeling constipated and gassy and it turns out I had a very rare symptom called Ogilvy’s disease, or pseudo obstruction of the colon. There is no obstruction but your colon quits functioning anyway. My friends kept saying Oh you’re just constipated and blocked. The doctors said give it time. They gave me 3 enemas. Finally they did an X-ray and I was admitted right away. My colon was hugely dilated and could have exploded, spilled bacteria in my gut, and killed me. They almost had to remove it. It’s caused by opioid use, usually. I was only on opioids for five days in the hospital I didn’t even take any with me what I was discharged. This is a very rare syndrome. I started talking to a lot of nurses and no one had heard of it. Only doctors learn about it in med school.

If I hadn’t been at Mayo I don’t think any other hospital would have bothered doing that X-ray and I would likely have ruptured and died.

It is common for patients to be rehospitalized post transplant! I didn’t think it would happen to me since Im relatively young (54), no heart issues, no diabetes, and the operation went great. It did happen.

Recovery is not a straight line. It’s a marathon not a sprint.

Mayo has a transplant support group that meets every Thursdays at 7 pm. It is enormously helpful!!!! I encourage you to get the contact info from them and maybe I’ll see you there. Some people in the group have just had a transplant, some are two or three years out, one is on his third transplant.

[LeslieK]

💙