I just got off the phone with Dr Dunn(my transplant surgeon). She had the final report on the organs I declined last week. The Pathologist did come back with 'High Grade'. She told me I had made the right decision, declining the organs. None of the organs were transplanted. So as she put it...' I live for another day '. She apologized for such a long day. As we all put it.....we had a trial run and know what to expect on the next call.
I knew before I walked outta the Transplant Hospital that I made the right decision and its nice that there is no 2nd guessing anything. Now I wait for the next call and cross my fingers it comes sooner then later.
Friday, March 27, 2009
Monday, March 23, 2009
Almost Transplant - Trial Run
On Saturday March 21st I received a phone call at 1am from my surgeon at the U of M Transplant Hospital that they had a match for pancreas and kidney. The donor was a 29 yr old female at Mayo with a brain tumor. Dr Dunn(my surgeon) wanted me at the hospital by 10am. So the calls began....Mom - Leslie - Laurie, we all packed and took off...gotta thank Laurie for driving with only a few hours sleep. We walked into the hospital around 7:30am and the process began.
Got checked in and the paperwork and tests started. Doctors examinations, blood work, chest x-ray, ekg, and a disinfecting shower from head to toe. Then the wait begun.
Dr Dunn came in my room to tell me what was happening. After the donor passes the organs will be removed and flown to the U of M Hospital to be examined by her. She told me with organs from a donor with a brain tumor the Pathologist need to do a biopsy on the brain tissue to see if is a High Grade or Low Grade. Low Grade means organs are safe for transplant. So we need to wait for those results.
I was told by the nurses things would start at 2:30pm, then it was 6:30pm. Around 8pm Dr Dunn had called and told me the organs were there and they look great but she was still waiting on the Pathologist results.
After laying in the bed most of the time I asked if I could get up and walk. So went down to the family waiting room with Mom, Laurie, Lisa, and Leslie. Walked back to the room because my IV alarm was peeping. My nurse took care of the alarm and told me my Doctor would like to talk with me around 9:30pm.
Laurie, Leslie, and I walked back to my room to wait for the Doctor. Around 10 the phone rang...it was Dr Dunn.
She told me she had the results but wasn't what she wanted to hear so she asked the Pathologist to run the test again. After both test, all the Pathologist could say was..."we are pretty sure the organs are safe" They couldn't give a 100% that the organs be safe. Dr Dunn told them she needed to talk with me. She gave me all the medical results and asked for my thoughts......
I told her, I can't go on "pretty sure", with getting 2 organs my chances double on possibly of cancer so 'pretty sure' isn't good enough for me to except the organs. She agreed that I was making the right decision. So she informed the transplant team that I will not except the organs.
Leslie went to inform the rest on my decision. I was then discharged, dressed and we packed and left the hospital at 11pm. A VERY LONG DAY!!!!
Was a very LONG day and emotionally on a roller coaster...very high then dropped very low. But I know I made the right decision and also know 'The Call' will come again. We will be ready for the next call.
Got checked in and the paperwork and tests started. Doctors examinations, blood work, chest x-ray, ekg, and a disinfecting shower from head to toe. Then the wait begun.
Dr Dunn came in my room to tell me what was happening. After the donor passes the organs will be removed and flown to the U of M Hospital to be examined by her. She told me with organs from a donor with a brain tumor the Pathologist need to do a biopsy on the brain tissue to see if is a High Grade or Low Grade. Low Grade means organs are safe for transplant. So we need to wait for those results.
I was told by the nurses things would start at 2:30pm, then it was 6:30pm. Around 8pm Dr Dunn had called and told me the organs were there and they look great but she was still waiting on the Pathologist results.
After laying in the bed most of the time I asked if I could get up and walk. So went down to the family waiting room with Mom, Laurie, Lisa, and Leslie. Walked back to the room because my IV alarm was peeping. My nurse took care of the alarm and told me my Doctor would like to talk with me around 9:30pm.
Laurie, Leslie, and I walked back to my room to wait for the Doctor. Around 10 the phone rang...it was Dr Dunn.
She told me she had the results but wasn't what she wanted to hear so she asked the Pathologist to run the test again. After both test, all the Pathologist could say was..."we are pretty sure the organs are safe" They couldn't give a 100% that the organs be safe. Dr Dunn told them she needed to talk with me. She gave me all the medical results and asked for my thoughts......
I told her, I can't go on "pretty sure", with getting 2 organs my chances double on possibly of cancer so 'pretty sure' isn't good enough for me to except the organs. She agreed that I was making the right decision. So she informed the transplant team that I will not except the organs.
Leslie went to inform the rest on my decision. I was then discharged, dressed and we packed and left the hospital at 11pm. A VERY LONG DAY!!!!
Was a very LONG day and emotionally on a roller coaster...very high then dropped very low. But I know I made the right decision and also know 'The Call' will come again. We will be ready for the next call.
Monday, March 2, 2009
Ur-in-e Trouble website
The Duluth Kidney Walk
My team is now set up, 'Ur-in-e Trouble' Team. Come help me reach my fundraising goal! This is an exciting opportunity for us to work together to help people understand the need for early detection of kidney disease. In addition to raising funds for research and help for patients and their families, the Kidney Walk is a great way to bring the community together! ! With our help, we will be able to make a difference in chronic kidney disease!
Please come join me on the walk or you can click the link below (my team page) to help support me and my team with a donation by selecting the 'Join Team' and follow the steps.
Thank You
http://walk.kidney.org/site/TR/Walk/MinnesotaamptheDakotas/1576144782?pg=team&fr_id=1550&team_id=24910
My team is now set up, 'Ur-in-e Trouble' Team. Come help me reach my fundraising goal! This is an exciting opportunity for us to work together to help people understand the need for early detection of kidney disease. In addition to raising funds for research and help for patients and their families, the Kidney Walk is a great way to bring the community together! ! With our help, we will be able to make a difference in chronic kidney disease!
Please come join me on the walk or you can click the link below (my team page) to help support me and my team with a donation by selecting the 'Join Team' and follow the steps.
Thank You
http://walk.kidney.org/site/TR/Walk/MinnesotaamptheDakotas/1576144782?pg=team&fr_id=1550&team_id=24910
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