Hi everyone,
been a while hasn't it? Not much has gone on in the past month, but I do have some things to update you on. To start out, I'm feeling pretty well lately. Since my last update, it has pretty much been smooth sailing with the exception of about a week stretch. This was an absolutely horrible time for me. I couldn't eat, drink, or pretty much move. It was seriously worse than some of my bouts of crap after chemo. I don't know where it came from, how I got it or how it went away, but it was pretty damn close to how I felt when I had Echoli in Costa Rica. It started out on a Tuesday morning a couple of weeks ago, and I really just felt bad all around. I had a small breakfast and took Floyd out. From there it progressively got worse and worse, to the point where I didn't want to move, and food and drink sounded just aweful. Aside from a few bites of some fruit and a peanut butter and jelly sandwich, I had nothing to eat that entire time. It got so bad that I had to leave a good friend's wedding early. I made it through the ceremony, but had to pull the shoot after that and miss the reception. I felt terrible about it but just couldn't do it, so I left. Anyway, that was the Sunday following the Tuesday when it started. Every night that week I would go to sleep prayng that this terrible feeling would go away, then I would wake up the next morning feeling worse than the night before. It finally went away the next Tuesday, so for 7 full days I was in pure hell. Luckily enough for me, that as been pretty much it when it comes to feeling bad. I can only hope that I never have to go through that again, but that is just dreaming.
The other update I have is the results I got from the latest catscan on my lungs. Good news!!! The surgeon was successfull in getting everything out he was supposed to. There are still some specks on the lung, but those are of no consequence. I'm pretty much good to go and in recovery mode. I still have to do bags of antibiotics through IV every now and then, but that is really just to make sure that if there is any infection hiding somewhere, we'll kill it. Now it's all about staying active and trying to get that lung back into shape. I have tried to run a few times, but that is just too much right now. After a quarter of a mile or so, I am completely out of breath, almost to the point where I feel like I'm suffocating. My plan is to take it slow and mellow. I want to give the stationary bike a try, and maybe some light weights, and if that works out, I can start to work up from there...we shall see.
My Atrial Flutter has been kept under control pretty well by the medications I'm on. There have been a few times where I've take the medication late, and my heart popped into that 250 beats a minute mode. Even though the doctors have told me that it's not anything to really worry about, that is pretty scary. All I can say is the heart is an amazing thing for it to be able to take that many beats per minute, and have it not turn into a full blown heart attack. To fix it, they will probably do the cathetor thing where they put it in my hip and run it all the way up to the heart. When it's there, it has a burning device at the end of the tube that burns the part of the upper heart that causing the problem. Then they pull the tube out and I'm good to go. Pretty crazy that they can do that as an out patient procedure. I don't know, to me that sounds pretty gnarley but as I said, it's a pretty easy thing for them to do and it should fix the flutter permanently.
Finally, my bone marrow transplant is scheduled for the end of November. We don't have an exact date yet, but it will be right around that time. It obviously depends on when my donor has time. When our coordinators figure all of that out, I'll be a happy guy. I know it's right around the corner which is a very good feeling. This pneumonia has ruined enough of my life, so it's really good knowing that we're finally past it and done with that horrible chapter. Now we can move on to the important stuff. Soon enough, I'll be on the road to recovery and closer to getting my life back. I just want to get back to work and start exercising again...that is pretty much it and trust me, that time cannot come soon enough.
That's it everyone. I hope you are all doing well and I thank you once again for your support, love and prayers. Keep it all coming because I use every ounce of it. Take care, be well and make sure you have some sort of fun every day.
-Kurt
Wednesday, October 20, 2010
Friday, September 17, 2010
9-17-2010
So, I'm not sure how much detail I am going to get into, but a lot has happened since my last message. I'll try to keep it short and sweet, but that may be a little tough given the events of the last few weeks.
Anyway, let me start with the surgery, which finally came on Sept 23rd. I could not have been happier going in, thinking this would be the end of my bout with pneumonia and the start of my new bone marrow transplant journey. All of that was correct, but it was a painful experience to say the least. So the 23rd came and all was good. I was in pre-op getting set up with all of the IV's, as well as getting hooked up with an epidural. I guess this is common for the surgery I was about to have done. In fact, the doctor pulled my family aside and said what he was about to do to me was the most painful procedure you could do to anyone. So with that said, the epidural is a must right??? Wrong. They spent 2 hours trying to find a spot in my spine that worked. For 2 hours I was draped over a pillow with my back arched as much as it could be arched, while they picked and poked along my spine to try to find a spot that worked. Well, unfortunately they never found one. So because they had already spent two hours trying to do this, we were way behind, so the surgeon and his team decided it was time to go forward with the surgery. My last memory was asking the epidural guy if I was going to be in a world of hurt because of they couldn't find a spot. He said there were other ways of dealing with the pain and i'll be fine. Well, that could not have been more false. When they were done fileting my side open and cutting out my lung, I came out of my sleep. Please believe me when I tell you I was in the worst pain you could ever imagine. They had no idea how high my tolerance for pain medication was, so they were giving me doses that were a fraction of what they should have been. It finally took them about 5 hours to get it to a point where I could tolerate it. I forced myself to go to sleep and the nightmare was over.
When I woke up the next day, I was still in pain, but not nearly as much as the night before and they seemed to have the right pain med cocktail which helped. Ha, my thoughts of coming out of the surgery, floating on a pain med cloud could not have been further from reality. In truth, I never, ever comfortable from the moment I came out of surgery, to the time I was released 8 days later. It was a very rough road but the pain is now pretty much gone and now all I am dealing with is tightness and some soreness. Nothing I would consider as pain.
So I was released from the hospital post surgery on September 1st. At that point everything seemed fine. I was taking things slow but still being active like the doctors told me. The problem now was that I was getting really light headed at times, and for the most part, felt like crap. I crumbled to the floor a couple of times and almost completely passed out a few times as well. During these episodes my heart would race faster than I had ever felt, and you could see my heart almost jumping out of my chest. Finally, on Friday September 10th, my dad and I drove down to San Diego for a quick doctor visit to see what the hell was going on. As with all doctor visits, the first thing they do is check blood pressure, heart rate and some other vitals. Well, my heart rate was 246 beats per minute. Inside of 10 minutes, I was surrounded by 15 medics, a few doctors with two fire trucks and an ambulance out front. I have been through a lot in the last couple of years, but I have never seen a response like this. It was crazy, but I guess it was necessary. They immediately admitted me to the hospital and started trying to figure things out. Turns out I have whats called an Atrial Flutter which is basically a condition where my heart beats out of rhythm, and can sometimes beat uncontrollably like what was happening with me. My heart wasn't beating at that crazy pace all of the time. It really only happened a few times a day, but it was serious none the less.
To treat it they almost shocked my heart back into the right pace. It's normal to do this for an A Flutter, but it can sometimes also be handled by medication. Luckily for me, the medication went in first and my heart responded. So as of now, my heart is beating at a normal pace and all seems good. The meds I'm on are what are making my heart beat right, but I still have this A Flutter. There is a good chance that my heart will flip back into it's normal, natural rhythm, but if not, then they will probably have to shock me. I was in the hospital this time for 4 days while they kept me there for close observation. During that time, my heart hit the 250 range a few times, but after the process of elimination, they found the right meds to normalize my heart rate. I can only hope that my heart does pop itself back into rhythm, because getting shocked by those paddles on my chest does not sound like a good time.
Since my release on Monday, I have been feeling great and my heart has been beating fine. I was at the doctor yesterday and they said everything looked good as well. My blood counts look great and my heart sounded normal, so as of now, all is good.
As far as the future holds, they have to let me lung heal for a few more weeks before they can really go in the and determine if the infection is gone. Until then, it's walking every day and taking the right meds which will hopefully clean anything out that was hanging around. I'm still on the IV every other day, but like I said, it's all in an effort to clean everything out, so I'll live with it. Nothing can really be done on the bone marrow transplant side until we figure out what is going on with the lung, but if everything goes according to plan, we are targeting very late November/early December for the transplant. A lot has to happen between now and then to make that a reality, but it feels great to even be discussing it again. Sorry for the extra long update, but as you can see, a lot has happened. Take care everyone and be well.
Anyway, let me start with the surgery, which finally came on Sept 23rd. I could not have been happier going in, thinking this would be the end of my bout with pneumonia and the start of my new bone marrow transplant journey. All of that was correct, but it was a painful experience to say the least. So the 23rd came and all was good. I was in pre-op getting set up with all of the IV's, as well as getting hooked up with an epidural. I guess this is common for the surgery I was about to have done. In fact, the doctor pulled my family aside and said what he was about to do to me was the most painful procedure you could do to anyone. So with that said, the epidural is a must right??? Wrong. They spent 2 hours trying to find a spot in my spine that worked. For 2 hours I was draped over a pillow with my back arched as much as it could be arched, while they picked and poked along my spine to try to find a spot that worked. Well, unfortunately they never found one. So because they had already spent two hours trying to do this, we were way behind, so the surgeon and his team decided it was time to go forward with the surgery. My last memory was asking the epidural guy if I was going to be in a world of hurt because of they couldn't find a spot. He said there were other ways of dealing with the pain and i'll be fine. Well, that could not have been more false. When they were done fileting my side open and cutting out my lung, I came out of my sleep. Please believe me when I tell you I was in the worst pain you could ever imagine. They had no idea how high my tolerance for pain medication was, so they were giving me doses that were a fraction of what they should have been. It finally took them about 5 hours to get it to a point where I could tolerate it. I forced myself to go to sleep and the nightmare was over.
When I woke up the next day, I was still in pain, but not nearly as much as the night before and they seemed to have the right pain med cocktail which helped. Ha, my thoughts of coming out of the surgery, floating on a pain med cloud could not have been further from reality. In truth, I never, ever comfortable from the moment I came out of surgery, to the time I was released 8 days later. It was a very rough road but the pain is now pretty much gone and now all I am dealing with is tightness and some soreness. Nothing I would consider as pain.
So I was released from the hospital post surgery on September 1st. At that point everything seemed fine. I was taking things slow but still being active like the doctors told me. The problem now was that I was getting really light headed at times, and for the most part, felt like crap. I crumbled to the floor a couple of times and almost completely passed out a few times as well. During these episodes my heart would race faster than I had ever felt, and you could see my heart almost jumping out of my chest. Finally, on Friday September 10th, my dad and I drove down to San Diego for a quick doctor visit to see what the hell was going on. As with all doctor visits, the first thing they do is check blood pressure, heart rate and some other vitals. Well, my heart rate was 246 beats per minute. Inside of 10 minutes, I was surrounded by 15 medics, a few doctors with two fire trucks and an ambulance out front. I have been through a lot in the last couple of years, but I have never seen a response like this. It was crazy, but I guess it was necessary. They immediately admitted me to the hospital and started trying to figure things out. Turns out I have whats called an Atrial Flutter which is basically a condition where my heart beats out of rhythm, and can sometimes beat uncontrollably like what was happening with me. My heart wasn't beating at that crazy pace all of the time. It really only happened a few times a day, but it was serious none the less.
To treat it they almost shocked my heart back into the right pace. It's normal to do this for an A Flutter, but it can sometimes also be handled by medication. Luckily for me, the medication went in first and my heart responded. So as of now, my heart is beating at a normal pace and all seems good. The meds I'm on are what are making my heart beat right, but I still have this A Flutter. There is a good chance that my heart will flip back into it's normal, natural rhythm, but if not, then they will probably have to shock me. I was in the hospital this time for 4 days while they kept me there for close observation. During that time, my heart hit the 250 range a few times, but after the process of elimination, they found the right meds to normalize my heart rate. I can only hope that my heart does pop itself back into rhythm, because getting shocked by those paddles on my chest does not sound like a good time.
Since my release on Monday, I have been feeling great and my heart has been beating fine. I was at the doctor yesterday and they said everything looked good as well. My blood counts look great and my heart sounded normal, so as of now, all is good.
As far as the future holds, they have to let me lung heal for a few more weeks before they can really go in the and determine if the infection is gone. Until then, it's walking every day and taking the right meds which will hopefully clean anything out that was hanging around. I'm still on the IV every other day, but like I said, it's all in an effort to clean everything out, so I'll live with it. Nothing can really be done on the bone marrow transplant side until we figure out what is going on with the lung, but if everything goes according to plan, we are targeting very late November/early December for the transplant. A lot has to happen between now and then to make that a reality, but it feels great to even be discussing it again. Sorry for the extra long update, but as you can see, a lot has happened. Take care everyone and be well.
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