3rd time is the charm (I hope)
Hello,
I hope this finds everyone doing well. My story begins in a land far far away called Germany which is where I was borne. I was a very sick child and spent most of my childhood in and out of the hospital and enduring exploratory surgeries to try to find out what was wrong with me. At age 13 another such surgery showed that I suffered from Reflux Nephropathy. I had lost 1 kidney at age 7 after 3.5 months in the hospital. I went 9 more yrs. with relatively good health and even did a stint in the US Air Force. At age 22 I began CAPD and in Jan. 1987 I had my first transplant. It lasted for 6 yrs.a d 3 months. Then back on dialysis and in 1994 I had the second transplant. In my mind this one was going to last me the rest of my life. I received this kidney from a 19 yr. old young man who was killed in a car accident. I had this one for 19 yrs. Now I've been on dialysis for almost 5 yrs. I tried to get listed through the VA in Iowa City which is where I got the second transplant. My wife had to set up a Go Fund Me account due to the fact that I'm a disable veteran on a very fixed income and she had to close her business because of having to care for me. But they said that after having Thyroid cancer last year they want me to be cancer free for at least another year. I am cancer free right now, but they won't budge. The Mayo Clinic was recommended so I thought it was worth a shot. We just got back from the week long work up and are very hopeful and have our fingers crossed. A person has to be independently wealthy or have a very generous family to pay the 20% that medicare doesn't pay and I have neither. Obviously there is much more to my story and eventually I will write it all down, but for now this is a good start. Are there any other multiple kidney transplant recipients out there?
Interested in more discussions like this? Go to the Kidney & Bladder Support Group.
@andtridd63 I see that you are a new member, and I want to welcome you to Mayo Connect. I am a volunteer mentor, and a liver/kidney recipient. I admire your strength and attitude in the midst of your strenuous health journey.
I would like to invite you to look at the kidney transplant discussion in the Transplant Discussion Group. where you will meet @ca426, who has told us that he has had 4 kidney transplants.
https://connect.mayoclinic.org/discussion/kidney-transplant-1/?pg=1
And if you want to direct a question or comment to a particular individual, copy their @name at the beginning of your message, just like I did yours. (you can also click on a member's @name to read about them)
I look forward to hearing more about your story. And I look forward to hearing from some others who will be able to provide some helpful information and some support.
Rosemary
Hello @andtridd63,
I'd like to extend my welcome too, and thank you for sharing your story. I'm so glad to hear that your experience at Mayo Clinic has offered you hope – it is important to have faith, hope and strength, and to take care of yourself, to stay well for the time when you do receive a transplant. Sometimes it can help to connect with others who know what you’re going, and I'd like to introduce you to a few Connect members.
Please meet @cehunt57, (pancreas transplant some years ago; currently waiting for a kidney transplant), and @jtannen1, who is also waiting for a kidney; @hardaway3, (2 kidney transplants), and @ters1993, whose husband has had two transplants.
I'd sincerely encourage you to read through some of the conversations taking place in this discussion, https://connect.mayoclinic.org/discussion/kidney-transplant-1/ where you will meet other transplant recipients who've shared their incredible health journeys.
@andtridd63, may I ask what are the next steps?
I'm flattered to have been mentioned by @kanaazpereira. I'm not a multiple kidney transplant recipient but I did have a pancreas transplant 13 years ago. It was due to Type 1 Diabetes. I had uncontrolled blood sugar and was developing complications despite more conventional treatments. I did not want to loose my vision or kidney function. My transplant was my own personal miracle. I am so grateful for it. Some complications reversed and my kidney function stabilized. A couple years ago the kidney function started decreasing and I met criteria to be listed for kidney transplant. I was evaluated, approved and accepted for kidney transplant at 2 facilities. I chose Mayo in Rochester. They have followed me for 2 years now. I am looking for a living kidney donor. Currently my diabetes and CKD are stable. I feel blessed. My husband has good insurance through his employer. He has been my caregiver and I his caregiver at times. We take turns. He had thyroid cancer in 2008. Our doctor said "that is one of the most treatable kinds, if caught early". He has been cancer free for many years now. My father-in-law had a different kind of ESRD. He had a kidney transplant at age 76. He was on Medicare and may have had an additional private policy of some sort. I don't remember the details and terms but the majority of expenses were covered. I do know that Mayo has a well rounded team (social workers and financial workers) to help you find in information about resources and benefits you may be eligible for. Thank you for your military service. I wish there were greater benefits and resources to care for veterans. Hopes and prayers for all the best during this part of your health journey.