Hi Everyone-
Kurt's pain in his shoulder and abdomen returned along with more nausea. They did a scan and found a massive amount of fluid around his heart. They immediately did surgery and put a tube through his ribs near his heart to drain the liquid. The doctors kept the tube in so it could continue to drain and removed it yesterday. He was moved to 2 East (our home since November 8th was 3 West) where nurses can consistently monitor his heart.
We still have not received "official" information regarding his bone marrow biopsy from Friday. We are staying positive with the "no news is good news" approach as of today. We hope to get full results tomorrow.
The doctors found liquid surrounding his lungs so there will be a bronchoscopy tomorrow morning at 9am to remove some of the liquid and place it under a microscope to see what it is and decide how to treat it.
Kurt is recovering from his surgery and will be in the next few days. Please continue to keep him in your thoughts and prayers for a speedy recovery.
-Evey
Wednesday, January 26, 2011
Tuesday, January 18, 2011
Day + 26 (Jan18, 2011)
Hi Everyone,
I hope you are all doing well since my last message. Things have certainly taken a turn for the better on our end here. I'll start with the VOD issue I was dealing with which reqiured that new medication Defribrotide. And before I get started, I'd like to clarify one thing. In reading some of your comments, it sounded like Evey and I were coming out to all of you asking to help fund that drug. I thank you all for mentioning it but that was not our intention. We simply wrote that to let you all know what we have to deal with with some of theses things that crop up.
Anyway, the great news is we got the funding for the drug about a day after it we requested so we had someone in our corner on that one. As a result, we were able to start attacking the VOD immediately and I sit here today with the same readings and results as a normal person without VOD. We are going to continue through the end of the medication cycle (21 days) so we can continue to track results, but the stuff was approved and has already done what it was supposed to do. Very nice!
During that time, my white cell counts have come through in a big way. They showed up about 7 days ago and have been going crazy trying to attack all the infections in my body. They have gone frome 1,300 which is what they showed up as, and have fluctuated between that number and 18,000 ever since. They have even started to help in the fight with my Colitis. A normal white blood count is 2,500 so to see mine at 18,000 means my body was pretty infected and in bad shape.
I have also picked up some random pains here and there in the past couple of weeks. The first one was in my abdomen. It was so bad I could barely move around in bed let alone get in and out of it. They took some cat-scans and x-rays and determined that there is still a bunch "stuff" going on in that part of my colon. They told me that my white cells have now taken to the fight as well as the anti-biotics and really shouldn't be a problem aside from dealing with the pain. As of now the pain is gone and all is good. Then this tweaked nerve thing popped up and started sending out streaking pains all throughout my back. They could tell me nothing about it so thats why I call it a "tweaked nerve thing". Anyway, that lasted for about 3 nights and eventually went away on it's own.
So, with all of that said, the VOD is on it's way out, the Colitis is getting better as I type, random pains have been erradicated and my white cell counts have recovered. Those are all really good things which are leading me down a path which I never thought possible...going home. Yep, with all of this said, I'll be heading home in a couple of weeks (if all still is going well). I still have a bone marrow biopsy to get through which will be later this week, but those are the facts as of this evening and coming home soon is my only goal as of now. I can't wait to lay in bed with my wife, my dog and my DVR. I know, sounds lame, but trust me, those are the only things I want, and I want them now!!! Take care everyone and be well. Evey, Floyd and I send our love and can't thank you enough for your love and support.
Andrew, send me your email address. kurt.thallmayer@ingrammicro.com
I hope you are all doing well since my last message. Things have certainly taken a turn for the better on our end here. I'll start with the VOD issue I was dealing with which reqiured that new medication Defribrotide. And before I get started, I'd like to clarify one thing. In reading some of your comments, it sounded like Evey and I were coming out to all of you asking to help fund that drug. I thank you all for mentioning it but that was not our intention. We simply wrote that to let you all know what we have to deal with with some of theses things that crop up.
Anyway, the great news is we got the funding for the drug about a day after it we requested so we had someone in our corner on that one. As a result, we were able to start attacking the VOD immediately and I sit here today with the same readings and results as a normal person without VOD. We are going to continue through the end of the medication cycle (21 days) so we can continue to track results, but the stuff was approved and has already done what it was supposed to do. Very nice!
During that time, my white cell counts have come through in a big way. They showed up about 7 days ago and have been going crazy trying to attack all the infections in my body. They have gone frome 1,300 which is what they showed up as, and have fluctuated between that number and 18,000 ever since. They have even started to help in the fight with my Colitis. A normal white blood count is 2,500 so to see mine at 18,000 means my body was pretty infected and in bad shape.
I have also picked up some random pains here and there in the past couple of weeks. The first one was in my abdomen. It was so bad I could barely move around in bed let alone get in and out of it. They took some cat-scans and x-rays and determined that there is still a bunch "stuff" going on in that part of my colon. They told me that my white cells have now taken to the fight as well as the anti-biotics and really shouldn't be a problem aside from dealing with the pain. As of now the pain is gone and all is good. Then this tweaked nerve thing popped up and started sending out streaking pains all throughout my back. They could tell me nothing about it so thats why I call it a "tweaked nerve thing". Anyway, that lasted for about 3 nights and eventually went away on it's own.
So, with all of that said, the VOD is on it's way out, the Colitis is getting better as I type, random pains have been erradicated and my white cell counts have recovered. Those are all really good things which are leading me down a path which I never thought possible...going home. Yep, with all of this said, I'll be heading home in a couple of weeks (if all still is going well). I still have a bone marrow biopsy to get through which will be later this week, but those are the facts as of this evening and coming home soon is my only goal as of now. I can't wait to lay in bed with my wife, my dog and my DVR. I know, sounds lame, but trust me, those are the only things I want, and I want them now!!! Take care everyone and be well. Evey, Floyd and I send our love and can't thank you enough for your love and support.
Andrew, send me your email address. kurt.thallmayer@ingrammicro.com
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