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
Saturday, February 28, 2009
Duluth Kidney Walk
Come join my walk team, 'Ur-in-e Trouble' on the walk here in Duluth on May 17th. I am working on a website to share with everyone that will give more details, more information, and a way to join my team. Once the site is set I'll send out emails with the link. So if you're interested please keep May 17th open on your calendars.Saturday, December 20, 2008
10 weeks through dialysis
Its been 10 weeks since I started my dialysis. There's been a few ups n downs and frustrations but the Doctors and I think we have it under control now. The dialysis itself is going fine, I have the process down now. It has cleaned all the toxins that's been stored in my body so I do feel better. Got my appetite back and as of Thursday Dec 18th I reached 170 lbs. So have gained all the weight back that I lost.
There has been a few frustrations along the way. With the amount of dialysis fluid that I exchange everyday I get dehydrated very easily which drops my blood pressure. I try to keep drinking fluids and mix up some broth with extra sodium to help retain the fluids . It seems to help but I get very tired and not much stamina to do much. Also with the extra dextrose in the dialysis fluids that affect my blood sugars. There was a couple weeks where I couldn't get the levels below 400(normal range 120-150). I was adjusting my insulin pump daily to help get the levels down. Between my Doctors and I we finally got it under control and I'm doing much better now.
Last week I had a BIG scare. I finished my dialysis exchange and was dumping my drain bag when I felt all wet. I lifted my shirt and saw that the catheter had come apart so I was leaking all the fluid. I had to QUICKLY get to my supplies and get the emergency clamps to clamp off the end of catheter. My first thought was 'Im heading into surgery to repair this'-- I think if you'd taking my blood pressure at that time the bp machine would have blown up. Of course this was over the lunch hour so calling my Doctor and the Dialysis Center I only got their answering machines. I kept calling for an hour and finally got my Doctor's answering service, which called the Doctor and the Dialysis Center. My dialysis nurse called and told me to get there ASAP. I got a ride out there, don't think my jacket was zipped or my boots were tied. **I was in a hurry**
Colleen looked at the catheter and saw she could repair it.She got a new catheter put back together. But the next problem was a big possibility of infection. She called the Doctor to order the right antibiotics to get in me right away. We did an exchange with the antibiotics and then cross our fingers. We all think it was caught in time so NO infection ''thank god''.
So I have my good and bad days. But it looks like we have things under control. My lab work is coming back great. So I keep on with the dialysis and wait for that phone call for the transplant.
There has been a few frustrations along the way. With the amount of dialysis fluid that I exchange everyday I get dehydrated very easily which drops my blood pressure. I try to keep drinking fluids and mix up some broth with extra sodium to help retain the fluids . It seems to help but I get very tired and not much stamina to do much. Also with the extra dextrose in the dialysis fluids that affect my blood sugars. There was a couple weeks where I couldn't get the levels below 400(normal range 120-150). I was adjusting my insulin pump daily to help get the levels down. Between my Doctors and I we finally got it under control and I'm doing much better now.
Last week I had a BIG scare. I finished my dialysis exchange and was dumping my drain bag when I felt all wet. I lifted my shirt and saw that the catheter had come apart so I was leaking all the fluid. I had to QUICKLY get to my supplies and get the emergency clamps to clamp off the end of catheter. My first thought was 'Im heading into surgery to repair this'-- I think if you'd taking my blood pressure at that time the bp machine would have blown up. Of course this was over the lunch hour so calling my Doctor and the Dialysis Center I only got their answering machines. I kept calling for an hour and finally got my Doctor's answering service, which called the Doctor and the Dialysis Center. My dialysis nurse called and told me to get there ASAP. I got a ride out there, don't think my jacket was zipped or my boots were tied. **I was in a hurry**
Colleen looked at the catheter and saw she could repair it.She got a new catheter put back together. But the next problem was a big possibility of infection. She called the Doctor to order the right antibiotics to get in me right away. We did an exchange with the antibiotics and then cross our fingers. We all think it was caught in time so NO infection ''thank god''.
So I have my good and bad days. But it looks like we have things under control. My lab work is coming back great. So I keep on with the dialysis and wait for that phone call for the transplant.
Thursday, October 16, 2008
Tested for match
John, co-worker of mine, was interested in donating a kidney to me and was tested to see if we'd match. Yesterday when I was at work.I meant with John and found out that we did not match. Wrong blood type. He was a little upset that we didn't match but told me he was hoping he'd match with someone else. We all have our fingers crossed.
My home dialysis is going OK. Yesterday I had a pretty rough day. I went to work but my blood pressure was so low. I was standing opening an exhibit and went down. I was helped up and put in the Depot's wheelchair. Couple of the building maintenense guys wheeled me across the street to my appartment. I'm very dehydrated with the dialysis exchanges. I had an appointment at the Dialysis Center and when I walked in, my dialysis nurse said "Brian, you look like a ghost, your so white!" I was given a couple bags of IV fluids and as my nurse put it..."you have color in your lips now..you pinked right up" I'm a little ware out today. Just trying to keep pushing fluids to keep the blood pressure up and taking things slow.
My home dialysis is going OK. Yesterday I had a pretty rough day. I went to work but my blood pressure was so low. I was standing opening an exhibit and went down. I was helped up and put in the Depot's wheelchair. Couple of the building maintenense guys wheeled me across the street to my appartment. I'm very dehydrated with the dialysis exchanges. I had an appointment at the Dialysis Center and when I walked in, my dialysis nurse said "Brian, you look like a ghost, your so white!" I was given a couple bags of IV fluids and as my nurse put it..."you have color in your lips now..you pinked right up" I'm a little ware out today. Just trying to keep pushing fluids to keep the blood pressure up and taking things slow.
Thursday, October 9, 2008
Finished Dialysis Training
Today I finished my dialysis training. Everything went great A LOT to learn and go through. Both my dialysis nurses feel I shouldn't have any problems doing my exchanges. I was very nervous in the beginning but feel much better after the last couple days doing them by myself. The biggest thing I need to be careful of is getting an infection. EVERYTHING must be clean, sterile, and sanitized to prevent from getting infected. Just need to go slow and follow all the steps during my exchange and things will be fine.
Now that I've started dialysis. Now its waiting for that phone call from UM Fairview Transplant Center that I have a match kidney/pancreas for a transplant. We all need to cross our fingers, say a little prayer, that the phone call comes sooner then later.
Now that I've started dialysis. Now its waiting for that phone call from UM Fairview Transplant Center that I have a match kidney/pancreas for a transplant. We all need to cross our fingers, say a little prayer, that the phone call comes sooner then later.
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