I was recently in the Pulmonary lab getting a check up and the technician and I were talking about my blog. I mentioned that I hadn't written in a long while and she made a good point about continuing to write and update about my progress. I'll summarize in a conversational format below:
Me: "Yeah I was blogging about my experiences with the cancer treatments and stem cell transplant (SCT)."
Tech: "Really, that's cool. Do you write regularly?"
Me: "Not since I got out of the hospital."
Tech: "So how do people know that you didn't die?"
Me: "My wife sends an email out from time to time."
Tech: "What about other people on the Internet that search and read that don't get the email. Like people that are going through an SCT or have cancer?"
Me: <insert stupid look on my face here> "Hmmm .... that's a good point"
Tech: "Yeah ... here ... blow into this tube"
Me: <turning blue>
So for those that didn't get the email ... I'm NOT dead!!! It's just been a bunch of slow news days with regard to my health. So now for the update!
After the hospital stay for the SCT I had to go back into the hospital for about a week. I lasted on the outside for about 4 days before I got sick. My blood pressure was extremely low and I started running a fever. So from Feb 15th to the 21st I was back in the hospital. After that I started the slow and arduous climb back to health. Soon after that last hospital stay I had to have my central line taken out because it kept getting infections. That was actually a blessing because I was tired of taking a shower with a tube hanging out of my chest.
I tried to get back on the exercise horse and I promptly hurt myself. That little mistake ended with me going to physical therapy for several months. Next time I'll think twice of trying to ride 4 miles on my bike a month after being discharged from the hospital.
Doctor appointments with my Hematologist were about every week at first but as my numbers have started looking better I now only have to go once a month. I've officially been in remission since February/March so that is some pretty great news. The Amyloidosis is not active anymore so atleast it isn't doing anymore damage to my organs. I still have the effects of congestive heart failure though and that part sucks. My stamina has gotten better. However, I feel I'm a shadow of my former self, but atleast I'm still breathing!!! My cardiologist did an EKG and I've been steady with an ejection fraction of 20 to 25. There are some drug companies out there testing drugs that remove imbedded Amyloid proteins so I'm hoping that within the next 5 to 10 years maybe something will come to market.
I went back to work half time in May and then full time in June. It was really nice to get back to work. I missed the people and being sick and on the couch for 8 months really is not a pleasure. I don't recommend it to anyone!!!
So that is it in a nutshell. Things are progressing slowly but surely. Just waiting around for the big one year check up in January. I'll get a PET scan and a bone marrow biopsy. For those of you that don't remember what the biopsy feels like, look back at my earlier posts and you can recap that experience! Fun times!! I'll try and keep up with this a little more often!
See y'all next time!
Ed
No comments:
Post a Comment