Mayo Clinic Connect
This is a link to my story someone helped me create something. He is a radio host and he created this by the e-mail I sent him check it out.
Joshua, this is great!!! praying for you that your donor will come soon! Thank you for sharing this post.
@jamienolson, Joshua, I join Jamie in praying that your donor will come soon. I hope someone who sees this will respond. Your endurance and your determination are a tribute to your deep inner strength.
Sending you a big virtual hug!
@jtannen1, I am replying as a mom, grandma, and transplant recipient. My thoughts are with you as I viewed your story. You have been thru a “whole buncha stuff” as my boys used to say. I admire your strength. I was on dialysis for around 8 weeks leading up to my own transplant; it was as outpatient 3 days per week. And I know how much of a bother it was, but I accepted it because it kept me alive while waiting. I remember just wanting to get into my own bed under my warm covers and sleep the afternoon away! And during this time I would make plans in my mind of what I wanted to do when I got better. Can I ask you what you ‘dream’ of being able to do after your transplant? What kind of things do you look forward to being able to do? – only if you feel comfortable sharing, of course.
PS Oops! My reply to Jamie, should have been to you!
So my name is Josh Tannen and i am 29 years old and i am in need of my second kidney transplant. I had my first transplant back in 2002 in which my mom donated one of her kidneys to me in which it lasted close to 10 years. Then in 2011 i started losing weight and having some stomach problems which ultimately was diagnosed as kidney rejection. I was in and out of the hospital during the summer and fall needing to get blood transfusions due to by red blood cell count which is called Hemogloben fell down to dangerously low levels. Then one day late summer early fall i saw a blood doctor to find out what was going on with my red blood cell count and he did an emergency bone marrow biopsy and then i had to go to the ER again and get more blood by that time i must have recieved pints and pints of blood to get my red blood cell count up. The next day in the hospital one of the nephrologists came in and told me he had no idea what was going on and said that he was talking to Barnes jewish in St. Louis where i was before i moved to Florida where i lived for almost 2 years. I had my first transplant when i lived in St. Louis at Children’s Hospital there. Anyway so the doctor decided i needed to go back to St. Louis to Barnes so they could figure out what was going on with me. Incidentally the blood doctor told me that he believed it was one of the antirejection medication that was causing my problems. So the next day i got into an ambulance and headed to the airport where i got on a medical plane and headed for St. Louis it took about 2 hours or so to get back to St. Louis from Panama City Beach. As soon as i landed in St. Louis i got into another ambulance which met the plane there and headed to Barnes. My mom took the journey from Florida to St Louis with me so i wasn’t alone. So we met my dad at Barnes and i stayed at the hospital for a few days and saw one of my nephrologists that i had there before i moved to Florida. So after that hospital stay my mom went back to Florida and i stayed with my dad in St. Louis. So i went in and out of the hospital a few more times to get some blood in the fall. Then one day Barnes called and said i needed to start Dialysis which i was trying to hold off on it as much as possible. That same morning i woke up with having some breathing problems and it got worse throughout the day and finally i started to cough later that afternoon and that evening i told my dad i needed to go to the ER at Barnes so he took me this was the week before Halloween in 2011 and they determined when they checked me out in the Triage that my oxygen saturation level was low and they immediately put me on oxygen and they took me to a room and they intubated me as well as put some Iv’s in and i was out of it for a few days and i ended up waking up in the ICU on Friday morning feeling much better apparently the reason for what was going on was i had fluid in my lungs had i waited until the next morning i would have died. Anyway also while i was out of it i had dialysis started. So i spent one last night in the ICU and then went to a regular room. I ended up having to do in center Hemo dialysis My mom ended up coming up from Florida again to see me because of the latest situation. So i was supposed have been out on Halloween but because they could arrange dialysis in a out patient center i was stuck for a few more days. Then as soon as i got out i started Hemo at a dialysis center near my dad. I did Hemo for a few months and then in January switched to PD even though i got a catheter in before Christmas. Also before Christmas in 2011 i started the evaluation process for a kidney transplant at Barnes. I got listed a few months later. Then i lived with my dad until the summer of 2012 i lived on my own with a friend and i landed in the hospital twice. Once when i was dehydrated and my blood pressure was extremely low and i couldn’t call 911 so my mom who was back in Florida called our old neighbors and they came over and saw how bad i looked and they called 911 and an ambulance came and i went to the ER at Barnes for a few days even staying in the ICU for a night my pressure was 60/40. The second time i was in the hospital was when i got back from visiting Florida my potassium was high and my pressure was a little bit on the low side but it was not as bad as it was the previous time in the hospital. Then in the summer of 2013 i moved back to Florida and got evaluated and listed at Shands in Gainesville FL which was about 4 and a half hours from Panama City Beach where we lived. I actually got THE CALL from Shands in August of 2015 but it was a high risk kidney and i was too nervous to accept that kidney. The my mom and i moved to Phoenix where i got evaluated and listed at Mayo Clinic. I got my time on the list transferred first from barnes to shands and then from shands to mayo. So as of now i have been waiting for 5 and a half years on the UNOS list. I currently am on dialysis for 11 hours a night which is pretty tough. I have tried to find a living donor but haven’t had much luck but i am not giving up yet. The problem is because of my previous transplant and all of those blood tranfusions my Antibody level is 100% every month i get a blood tube from mayo and my dialysis nurses draw the blood and send it overnight to Mayo where they store the blood serum. If anyone is interested please call mayo clinic kidney transplant department Phoenix at (480)342–1010. My blood type is O positive but you can be a different blood type and do a pair kidney exchange if not a direct match. I would encourage anybody that is healthy to get tested and see if you could help. My insurance will cover testing as well as surgery and hospital stay if it gets that far. I will find a way to get you to Phoenix if need to come for a donor evaluation. Thank you for taking the time to read my story. That is a long version I have gone through so much it would be nice to find someone to help since I have done everything possible to try. Someone be my hero
Welcome back to Connect. It is with heavy heart that I re-read your story and hear that you are still waiting for a kidney. However, I’m glad you’re listed at Mayo in Phoenix. In our Toolkit, we offer suggestions on using social media to help find a living donor http://mayocl.in/2h1ChQ3. If I recall correctly, you are using many, if not all, of these tactics.
As you know, Connect is not a donor-matching service. However, sometimes it can help to connect with others who know what you’re going through. You may wish to connect with others, who are waiting too, in these discussions:
– Getting Listed http://mayocl.in/2jmI5VT
– Waiting and Scores http://mayocl.in/2qUblo8
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