On Nov 16, 2022, I received the precious gift of a new kidney. It came from a deceased donor. My renal panel data has been very strong and consistent since the transplant; (creatinine .88, eGFR 76.8) in labs this month. Very typical labs.
Please join me in remembering the deceased donor and their family. They are the heros!
Jayhawker
Congratulations on your 2nd Transplant Anniversary!! I know you have had a hard time with CMV, etc., but look at your labs! Fantastic creatinine and eGFR! Hope this means that things have turned around for you and all will be well now! So happy for you!!
Hope you plan a trip in your near future to see friends and family!
And YES, we would not be here today if it weren't for our organ donors, our Hero's that said YES! God bless them and their families!
The CMV did resurface this past summer. Naturally I was concerned and frustra. However, this time it resolved without treatment in 3 weeks leading to labs saying “not detected” again in three weeks. That’s where my labs read normally. So it was clear that my body recognized it and was able to respond effectively. The modified treatment plann based on my T-LGL leukemia worked. For the first time my transplant nephrologist was calm and confident about a treatment plan. My hematology oncologist had been confident about it all along but my nephrologist was not. It was a challenge to get her to work with my oncologist. She just doesn’t work with other doctors. Hopefully other patients will find her to be more open to working with other doctors after this experience.
Regardless, I’m confident we’ve got it figured out and I won’t have serious problems with CMV in my future. And I absolutely consider my kidney to be a rock star!!! Through all of that and my stress she just kept plugging away. She’s amazing!
Other good news. I’m a type II diabetic who wasn’t on meds for over a decade pre-transplant. I was placed on insulin post-transplant. My endocrinologist has been gradually cutting back on my insulin dosing due to numerous daily low glucose events. Last month he said that he will likely pull me totally off insulin in January. I’m exstatic! It looks like I may be able to handle these transplsnt meds without needing diabetes meds. Kind of incredible…
Jayhawker
Yeah for you . So glad things are working for you. What a journey though. I hope everything else is doing well. I'm still waiting. I love this song and Angelica. She is amazing. This song and Unstoppable by Sia are my "get through it" songs.
Yes, this song and about 5 others were my workout songs as I waited for the transplant and through the CMV situation (11 months) post-transplant.
Jayhawker
So happy for you that your labs are doing great. Yes all donors are precious angels
Deceased donors and live donors are true hero’s
Congratulations, Jayhawker! Here's to hoping you celebrate many more anniversaries!
Oh, it made my day to read your posts. So happy for you and wish you the best for years to come. Your arduous journey and how well you handle it was motivating. Thanks for sharing everything. Hugs and more hugs.
congratulations on your kidneyversary!!! So happy for you. Here’s to your continued stellar health. 🎉
So good to hear this🙏Your journey is truly inspirational. Wishing you many, many more years of bliss.
Prayers for your donor and the family. They are an inspiration too🙏
Happy second Kidneyversary! Thanks for the YouTube link. Wishing you many more years of health. Thank you to donors everywhere.
fantastic! Next month is a year and a half for me…still hard to believe. Putting a piece of someone else into your own body and it resuming functioning. Kind of mind blowing isn’t it?glad you’re doing better and have gotten your doctors all working together .
Definitely amazing! And you’ll soon be 18 months out!🎉
Hats off to them!
Congratulations! We owe everything to our donors and their consenting families 👍
congrats! May it give you many many many more years!
Wow...that was 2 years already...and a GFR of 76.8 , you must be rocking it !..So happy to hear from you and your inspiring story and the Donor who made it possible !
That is remarkable. A very good kidney and well taken care of by you
Congratulations on your two year anniversary! I wish you many more happy and healthy years! Both live and deceased organ donors are heroes. I feel that the best way to honor our donors is to do everything we can every day to keep our donated organ(s) healthy and viable.
I'm beyond happy for you! Imagine where would we be without our wonderful donors and our researchers. There is much promise ahead in various fields - keep the faith everyone!
Congratulations Jayhawker, I will be two years in February. My eGFR isn’t bad, but I would like it higher. I had 80 last summer, but have been staying around 60-66. Can I ask what your diet and exercise look like? Congrats again.
Because I have GERD I follow a plant based protein diet. I got help with this from the renal dietician in the transplant center to be sure it’s solid nutritionally as well as suppprts my system to fight viruses. All good is cooked to minimize exposure to harmful bacteria. I drink 3000ml of fluid daily.
Exercise has been challenging due to severe osteoarthritis in my left ankle. Right now I’m not allowed to walk much on it. They are recommrr we bring surgery (either joint replscement or bone fusion). However, my in-home PT has created a set of seated resistance band exercises I do 3x daily for strength and flex ability. I also splurged and purchased a NuStep (with my retirement bonus pay). Currently I log 3 miles “walking” on it daily.
The fluid makes a huge difference with my data. Also, they had to pull me off Myfortic to get my CMV under control. Apparently myfortic is a problem for me with my T-LGL leukemia. So my dose of prograf was increased by .5mg and I take 5mg prednisone. Eliminating the third anti-rejection improved my data some… but I’d say the gluid intake and vegetarian diet are more likely the keys.
Jayhawker
Thanks. I am also plant based and I drink 64 oz and my hydration is always good, but I’m small stature. I’m not a very good vegan cause I only like certain vegetables. Have been that way since I was young. Do you use vinegar to clean all vegetables and fruits and/or do you ever eat salads out? I’ve been told to stay away from those and clean the vegetables and fruits with vinegar. My brother who is 11 years post was never told that, but I do see all the recalls and am leery about salads anyways. Thank for the info.
I've followed your journey as I'm still waiting to get back active again. I'm so happy for you and your 2 year anniversary and God bless those donors.
I say a prayer everyday for the family that had to make the decision to donate their son's organs. I will always keep them in my prayers.
Hi Jay hawker, congratulations on your kidneyversary! I made 3 years on November 17th. My 1st born son was my living donor and my hero! I still remember our conversation. He called and said, "Mama you gave me life and I want to give you a second chance at life." I have now witnessed the birth of two new additions to our family and so many wonderful memories have been created due to the unselfish act. I am so grateful and proud of all of our donors both deceased and living. They all are our true heroes ❤️ Here's to many more milestones, happy memories, and dancing like no one is watching!!!🕺💃🕺💃
Congratulations! Organ donors are truly life renewing heroes!
Still wearing a mask.
The whole finding a living donor process is a JOKE!!!
Transplant rejection
proteinuria
