Post Transplant Tips

[anster147]

Hello!

I am excited to be here and learn from everyone.

I just received a kidney transplant two weeks ago (Can't believe its already been two weeks!) and was wondering if anyone had any post transplant tips.

Best,

Ani

[DexterLab]

Congratulations! I am 9 months post transplant and I am doing great. You should be feeling a lot better already. It is a major operation so it will take some time to get back to full speed. It took six months for me.

Right now you are very much in the do what the doctors tell you mode. Don't do too much or lift too much. Walking is encouraged as exercise. Keep up with all the medical visits, you will eventually see the vampires less. Avoid getting an infection so lots of hand washing.

This a good time to develop some new habits you will need. Find a process that works for you to take your meds consistently and on time. And find a way to get your 2-3 liters of fluids every day. We get to do those things for the rest of time.

Congratulations again and good luck!

[Drdetroit]

I am 7&1/2 yrs post transplant after 2&1/2 yrs on dialysis. Pay attention to your Drs. , take your meds at the same time every day, drink lots of water. Keep your Albumin {protein} level up. My first couple months were a little difficult . Had a couple rejections in first year & half, so make sure you do your bloodwork as directed. I contacted my donors family after 3 yrs. It took me that long to write the letter as it was so emotional. I still get choked up.They were so excited to here from me, as I was the only recipient to contact them. I've had a few up's & downs, but I relish the gift I have. You should exercise if possible. I walked a lot. Your drugs are difficult,especially prednesone,with some side effects. CONGRATULATIONS & I WISH YOU WELL. This has been my experience & everyone is different. Hopefully any of this has helped. God Bless you!!

[WYOAnne NKF Ambassador]

Congratulations on your GIFT of a new kidney! I am 20 years post transplant.

- My best advice to you - if you start having any side effects or new symptoms, tell your transplant team right away. When I had some issues in the first couple of months my team helped to work them out. By looking at my blood levels of my immunosuppressants they were able to lower my dose, thus helping with my symptoms.

- Make sure you have all of your blood work as ordered. It is important if you are starting to reject your kidney that is caught as soon as possible. They can reverse it if it is caught early.

That first year, I had several kidney biopsies done of my new kidney since my creatinine had gone up some. All proved to be negative for rejection.

- Always take your meds on time! My doctors' stressed to me that that was one of THE most important things I had to do. Set up a routine and take them the same time everyday. To this day, I take my immunosuppressants at 9:00 am and at 9:00 pm. I am retired now. Did take them earlier when I was still working

- If you are not already doing it, walk everyday. You can start slow, like walk around the block, and then increase till you are walking about 30 minutes a day. You will find it helps you feel better.

- Don't know if they gave you a diet to follow or not. I did not have any, could eat anything I wanted. I just watch my salt and try to eat heart healthy. I also try to drink plenty of water everyday. I find if I don't drink much and then have my labs done, my creatinine and especially my BUN will be higher than normal. Can be a little scary when that happens, until you realize you didn't drink enough the day before.

- The most important thing - LIVE LIFE! Enjoy your new lease on life. My husband and I do a lot of traveling. I was hiking the Highline Trail in Glacier National Park 8 months after my transplant.

- For me personally, I found it very important to "give back" for this "GIFT OF LIFE." I volunteer with my local Donor Alliance. I am also an "Ambassador" on this site with the NKF. I also am a "Peer Mentor" with the NKF.

- Best of luck to you. Any questions, I am here for you.

[anster147 in reply to WYOAnne]

What does it mean to be a peer mentor? If there is a chance for mentorship I am interested.

[WYOAnne NKF Ambassador in reply to anster147]

As a peer mentor I call my mentees and we talk. It is all arranged through the NKF. They connect individuals who want support with someone who has been there. That would be ME. Right now I call a gentleman weekly. He is in Stage 5 CKD. I would be glad to be your Mentor. You need to look at the NKF website kidney.org regarding PEER SUPPORT and/or call 1-855-NKF-PEERS. See if you qualify. I will also tell Marissa, who is in charge of the program that I would welcome you as a person I would support as your Mentor.

[WYOAnne NKF Ambassador in reply to anster147]

I did contact Marissa who is in charge of the program - Peer Mentor. If you apply, it could be arranged for me to be your Mentor.

[smmahone]

I am also about 9 months out. Congrats to you. I agree with DexterLab.....

As time went on and I went back to work- life got hectic again. Try to have a schedule for your meds and remember to refill on time (several times I didn't realize I only had one pill left ).

I had had no issues until 2 weeks ago when I spiked a fever out of no where. My white blood cell count bottomed out for some unknown reason. But working through that. So once in awhile things will pop up but dont' worry.

Enjoy your gift

[Fixeroa]

Wow!!! I’m glad to hear you could overcome this hard challenge. Now you’ll be blessed the rest of your life, you’ll see.

Tips? Well first of all say thank you. Say it, sing it, yell it loud: Thank you!!!!! Either you are religious, spiritual or none of those, Be thankful every single morning, because now you’re a living miracle, congrats!!! 👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽

Mi second tip is to take care and give the proper follow up to your pills, your blood pressure, your body temperature and your weight. Any single change or difference, report it to your doctors. Also ask for future biopsies, these are important to asses the graft performance and health.

Second, drink plenty of water and avoid sugars and sodium 🧂, mainly. Also avoid fatty food refined flours and toronjas 🍊 and grapes 🍇. These last two could inhibit your prescription effectiveness (you may be taking Tacrolimus or cyclosporine ).

Take care of your surgical wound, cleaning it up carefully and changing gauze from your draining tube, if you still have it.

As you may know now, the hard thing is that you must be isolated during a long time (your doctors will determine how long it will take), be patient and enjoy books, Netflix or play station; whatever makes you feel better and entertained.

In this moment I have to go back to job, but wanted to take the time to send you over all my blessings and to share some advices of mine which helped me during the same process you’re going through now.

All may best wishes to you. Keep fighting with love.

David.

[anster147]

Wow thank you everyone! This was so helpful as well as encouraging to know there are people out there that know my experience and are living full lives post transplant. I feel so encouraged and glad there is a support system like this out here.

[WYOAnne NKF Ambassador]

For you to have a Peer Mentor go to kidney.org/patients/peers or you can call Marissa, who is in charge of the program and ask for me to be your mentor at 1-855-653-7337

Anne

[ThisAdventure]

Congrats! I’m 8 weeks post transplant and it’s been a rough journey but it is amazing how much better I’m feeling already - so hang in there with the drug side effects for now. It will get better as the doses drop!

A few practical things - I’ve found apps are really helpful to keep track of things. (I’m on an iphone but i’m sure there are options for different phones). I use Transplant Hero (free) to keep track of all the meds and doses - it sends you reminders at the right times and you go through a checklist of all the meds so you know you’ve taken everything. I’ve also got a free app to track my water consumption as it’s really important to drink loads - it also reminds you.

And chat to your surgeon about the best way to look after the cut if you’re concerned about the scar - mine said our bodies heal differently because of the immune suppression and recommended I keep the cut covered in micropore for at least three months, changing it every 5 days, so it doesn’t form a raised scar. So far it’s working!

All the best with the recovery - take it slow and listen to your body and don’t be too hard on yourself. You’re allowed to feel frustrated when things seem rough in the first few weeks