Friday, May 13, 2011
Kurt's Celebration of Life - May 18, 2011 Re-Post
Sorry all, Blogspot.com had a technical problem, so we had to re-post the information below. No changes from before.
Tuesday, May 10, 2011
May 10, 2011
Kurt Martin Thallmayer, 38, passed away peacefully today following a long battle with Leukemia. He was the beloved husband of Evey Thallmayer, brother Steve Thallmayer, and loving son of Erich Thallmayer and Andree Van Rensburg. He is survived by a loving family of Aunts, Uncles, Cousins, and a large group of friends that loved him very much. His lasting tribute will be all the lives he touched and all the friends who considered him family, all of whom will never forget his wit, his generosity, and his courage.
In lieu of flowers, memorials may be made in Kurt's name to The Leukemia and Lymphoma Society at www.lls.org.
Thank you all for standing by Kurt's side, every step of his battle and throughout the incredible life that he led.
Details for Kurt's Celebration of Life will be posted here in the next few days.
In lieu of flowers, memorials may be made in Kurt's name to The Leukemia and Lymphoma Society at www.lls.org.
Thank you all for standing by Kurt's side, every step of his battle and throughout the incredible life that he led.
Details for Kurt's Celebration of Life will be posted here in the next few days.
Saturday, April 30, 2011
4/30/11- Update
Hello Friends and Family- We just wanted to send an update on how things are at the moment with Kurt. This has been an incredibly difficult week for us. Kurt is currently being cared for in the ICU because his condition has not been good. Every day has slight changes forward and backward. Please continue to keep Kurt in your thoughts and prayers. It is greatly appreciated.
Additionally, because Kurt has so many great friends and family and is so well loved we've had an overwhelming amount of visitors. Due to the fact he is in an Intensive Care Unit the hospital needs to limit the allowed visitors to be family only. We really appreciate those that have already dropped by to visit, texted, emailed etc. because it really means a lot, but going forward we won't be able to have guests outside of family. We'd still love to hear from you via the blog and will continue to update you as we have more to share.
Love,
Evey (and Floyd)
Additionally, because Kurt has so many great friends and family and is so well loved we've had an overwhelming amount of visitors. Due to the fact he is in an Intensive Care Unit the hospital needs to limit the allowed visitors to be family only. We really appreciate those that have already dropped by to visit, texted, emailed etc. because it really means a lot, but going forward we won't be able to have guests outside of family. We'd still love to hear from you via the blog and will continue to update you as we have more to share.
Love,
Evey (and Floyd)
Monday, April 25, 2011
Please keep Kurt in your thoughts and prayers
Hi Everyone-
Kurt is in the ICU battling a severe infection in his lungs (pneumonia). We are in a wait and see phase at this point. He is very ill and could use all the positive thoughts and prayers that you can give to him at this time.
Thank you all for hanging with him. You are the reason he keeps fighting this battle.
Love,
Evey (and Floyd)
Kurt is in the ICU battling a severe infection in his lungs (pneumonia). We are in a wait and see phase at this point. He is very ill and could use all the positive thoughts and prayers that you can give to him at this time.
Thank you all for hanging with him. You are the reason he keeps fighting this battle.
Love,
Evey (and Floyd)
Friday, March 11, 2011
Day + 79 (March 11th, 2011)
Hi everyone,
well, that Friday came and went and and still I sat in the hospital. It wasn't until the middle of the next week that my prayers were answered and I was send packing. That was by far the most painful and frustrating stint I have ever had in the hospital. The walls seemed like they were closing in on me every day. I just couldn't deal with it for some reason. Regardless, that's all over now and I'm home.
it hasn't been that most enjoyable trip home though. From the first day I left I have been battling with some pretty brutal stomach nausea. One of the good things about being in the hospital is they can pump you with IV drugs to hide all of that stuff. At home you have to use meds which seldom really work so you are basically stuck dealing with it. I've tried them all too, and they seem to work sporadically. And when I say sporadically, I mean sporadically. Having this nausea really ruins just about everything. I don't want to talk to anyone, I don't feel like going out, I quite honestly don't feel like doing anything. I just want to lay on the couch and watch tv. That way I can unplug from the rest of the world and deal with the nausea. Trust me, it's a crappy exhistence and it drives my crazy, but it's the way it is right now.
My weight is way down aound the 145 level and I can't seeem to get it to go up. I am eating three solid meals a day and for some reason it doesn't make a blip on the scales. I'm at least happy I have my appetite, but again, the stomach nausea affects that to the point when I'm really only eating partial meals, but that should still get me out of the 145 range.
Outside of that I am spending about 2-3 days per week n San Diego either meeting with doctors, getting some sort of test performed on me, or getting a supplement of some sort...Magnesium, Potassium, etc...
There are a lot of complaints here and there should be, life isn't all that great right now with these stomach pains, but in the grand scheme of things, I'm doing alright. I'm back home with my family, I'm breathing and walking and waking up every day so with all that said I'm doing alright. My goal now is to try to figure out what is going on with my stomach and fix it. We have run some pretty crazy tests in te few weeks to try to figure out what's going on and they all come back saying things look good. I guess thats a good thing but on some level I'd like to find something so we can address it.
Take care everyone and thank you for reading. One of the things that suffers as a result of this stomach pain I'm having, is updating this site. I'm serious when I say I really don't want to do anything, I'll try to be better at that because I do feel good once I do write. I hope you are all doing well and and I appreciate your support.
well, that Friday came and went and and still I sat in the hospital. It wasn't until the middle of the next week that my prayers were answered and I was send packing. That was by far the most painful and frustrating stint I have ever had in the hospital. The walls seemed like they were closing in on me every day. I just couldn't deal with it for some reason. Regardless, that's all over now and I'm home.
it hasn't been that most enjoyable trip home though. From the first day I left I have been battling with some pretty brutal stomach nausea. One of the good things about being in the hospital is they can pump you with IV drugs to hide all of that stuff. At home you have to use meds which seldom really work so you are basically stuck dealing with it. I've tried them all too, and they seem to work sporadically. And when I say sporadically, I mean sporadically. Having this nausea really ruins just about everything. I don't want to talk to anyone, I don't feel like going out, I quite honestly don't feel like doing anything. I just want to lay on the couch and watch tv. That way I can unplug from the rest of the world and deal with the nausea. Trust me, it's a crappy exhistence and it drives my crazy, but it's the way it is right now.
My weight is way down aound the 145 level and I can't seeem to get it to go up. I am eating three solid meals a day and for some reason it doesn't make a blip on the scales. I'm at least happy I have my appetite, but again, the stomach nausea affects that to the point when I'm really only eating partial meals, but that should still get me out of the 145 range.
Outside of that I am spending about 2-3 days per week n San Diego either meeting with doctors, getting some sort of test performed on me, or getting a supplement of some sort...Magnesium, Potassium, etc...
There are a lot of complaints here and there should be, life isn't all that great right now with these stomach pains, but in the grand scheme of things, I'm doing alright. I'm back home with my family, I'm breathing and walking and waking up every day so with all that said I'm doing alright. My goal now is to try to figure out what is going on with my stomach and fix it. We have run some pretty crazy tests in te few weeks to try to figure out what's going on and they all come back saying things look good. I guess thats a good thing but on some level I'd like to find something so we can address it.
Take care everyone and thank you for reading. One of the things that suffers as a result of this stomach pain I'm having, is updating this site. I'm serious when I say I really don't want to do anything, I'll try to be better at that because I do feel good once I do write. I hope you are all doing well and and I appreciate your support.
Tuesday, February 1, 2011
Day + 40 (February 1, 2011)
Hi everyone, day 40 is upon us and and still we sitin the hospital. Word around the campfire is that we may get to head home around Friday sometime. That would be a Friday from heaven so we'll just have to wait and see.
As far as tests go, we're pretty much through them all. I had my broncial test a few weeks ago which which was not fun. There were indications that there was fluid and blood forming around my lung and heart that they wanted to test. So far, nothing has grown yet so they are thinking it may be a fungal infection. I am on Ambizone and have been for quite some time to help with the infection so we are just waiting to see if I get worse. I have had many CT scans, chest x rays, sonograms, chardiograms, EKG's, etc to make sure they doctors are not missing anything. Once we get the results from all these tests, I am hoping to get cleared to go home.
That's it for now. I just hope I get home in time for Superbowl Sunday where I can watch the game from our living room...
As far as tests go, we're pretty much through them all. I had my broncial test a few weeks ago which which was not fun. There were indications that there was fluid and blood forming around my lung and heart that they wanted to test. So far, nothing has grown yet so they are thinking it may be a fungal infection. I am on Ambizone and have been for quite some time to help with the infection so we are just waiting to see if I get worse. I have had many CT scans, chest x rays, sonograms, chardiograms, EKG's, etc to make sure they doctors are not missing anything. Once we get the results from all these tests, I am hoping to get cleared to go home.
That's it for now. I just hope I get home in time for Superbowl Sunday where I can watch the game from our living room...
Wednesday, January 26, 2011
Day + 34 (Jan 26, 2011)
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
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
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.
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