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
Wednesday, January 5, 2011
Day + 13
Hi Everybody. This is Day + 13 since it's the 13th day passed the transplant or 13 days passed my new birthday as they call it. We are barely through my P.R.E.S incident and we are onto our next issue. I haven't been feeling that well and have been retaining liquid which makes my entire body swell up, especially my arms and ankles. After many tests, I have been told I have Hepatic Veno-Occlusive Disease (VOD). This is a result of complications of my bone marrow transplant or the high dose chemotherapy I had to get. VOD is characterized by damage to blood vessels in the liver and surrounding liver cells, leading to pain, fluid retention, and abnormal liver function. You can read more about it if you want by googling it.
There is no cure for VOD so I have been asked to particpate in a clinical trial to test a new drug called Defibrotide that is not yet FDA approved. Evey and I signed the papers today and we are waiting to see if my insurance will cover it. The cost of the drug is over $40k. We will know late today or tomorrow if my insurance will help with the funding.
Other than that, I have been not feeling too well lately. The symptoms for the VOD is a constant battle going on in my abdomen which has caused me non-stop pain for the past 12 days. Sleeping is an absolute hassle and I am seriously in constant pain dealing with this so the quicker we can move past that the better off we'll all be. I haven't eaten in over 3 weeks. The doctors are trying to keep me hydrated through my IV and Evey has been trying to get me to have some broth, jello, popsicles, ice cream, ensure, etc but nothing helps or works. Nothing sounds good to eat and my throat and lungs hurt. The doctors think I have mouth sores which is causing a lot of pain when I swallow, from my stomach all the way up to my throat. Quite honestly the whole thing just sucks and and I mentioned before, we both want to move past it as soon as possible. Neither of us are getting any sleep and and we both seem like we're on the verge of going nuts.
On another note, I am looking forward to a long awaited trip from Floyd this week where he may be making an appearance when a group of friends show up tomorrow night. We'll have to wait and see how that rumor turns out. I've heard these things before and had them go south so I really don't want to get my hopes up.
Well that's about all I have for now. As I said we have a pretty good sized group showing up tomorrow as well as my bro and Dad tonight. Take care everyone and be well.
Love Kurt, Evey and Floyd.
There is no cure for VOD so I have been asked to particpate in a clinical trial to test a new drug called Defibrotide that is not yet FDA approved. Evey and I signed the papers today and we are waiting to see if my insurance will cover it. The cost of the drug is over $40k. We will know late today or tomorrow if my insurance will help with the funding.
Other than that, I have been not feeling too well lately. The symptoms for the VOD is a constant battle going on in my abdomen which has caused me non-stop pain for the past 12 days. Sleeping is an absolute hassle and I am seriously in constant pain dealing with this so the quicker we can move past that the better off we'll all be. I haven't eaten in over 3 weeks. The doctors are trying to keep me hydrated through my IV and Evey has been trying to get me to have some broth, jello, popsicles, ice cream, ensure, etc but nothing helps or works. Nothing sounds good to eat and my throat and lungs hurt. The doctors think I have mouth sores which is causing a lot of pain when I swallow, from my stomach all the way up to my throat. Quite honestly the whole thing just sucks and and I mentioned before, we both want to move past it as soon as possible. Neither of us are getting any sleep and and we both seem like we're on the verge of going nuts.
On another note, I am looking forward to a long awaited trip from Floyd this week where he may be making an appearance when a group of friends show up tomorrow night. We'll have to wait and see how that rumor turns out. I've heard these things before and had them go south so I really don't want to get my hopes up.
Well that's about all I have for now. As I said we have a pretty good sized group showing up tomorrow as well as my bro and Dad tonight. Take care everyone and be well.
Love Kurt, Evey and Floyd.
Subscribe to:
Posts (Atom)
