It's now January 17th...almost two weeks since my last update. I've had nothing but good news for myself.
Alice went back to work full-time on January 7th. I've been out on my own several times since then; I was able to attend the retirement party of my boss's boss...who I've known for 20+ years. I took Alice out to lunch one day. I even did our grocery shopping last weekend.
I began working "a few hours a day" from home on Monday, January 14th. I've been doing about 3 hours each day. I feel as if I'm actually a part of a team there again. A few things have lain dormant since I left...since they've already been shown to not be very time-sensitive, I'll be working on those for awhile.
Friends came over (one from as far as Warner Robbins) one weekend to do "whatever we needed done". There wasn't much, but one major thing was getting my bike and training stand upstairs. Since then, I've been doing a steady hour on it most days, keeping a careful eye on my heart rate like I promised the doctor. I've already seen quite an improvement and am hoping to be able to do the Bicycle Ride Across Georgia again this year, a week-long trip that this year will go about 400 miles from around Covington to St. Simons Island. I haven't missed one since my first in 2000.
The one thing that reminds me I'm not 100% is sleep; I'm sleeping 9-10 hrs or more every night. In the past, I was good on 7-7.5 hours. It may be a real need or maybe just a habit I've gotten into. I'll probably start setting an alarm next week and maybe start going back to the gym in the morning...seeing how that feels. I'll also allow time for a nap if that seems necessary.
Alice began a non-surgical treatment of her back a few weeks ago. We're keeping our fingers crossed that it works since the only real alternative is probably surgical...not fun for anyone and a long recuperation period.
Thanks for everything.
Jerry
Thursday, January 17, 2008
Saturday, January 5, 2008
"Complete Hematological Remission"
Along with some other great news, that's what we were told at the clinic yesterday (1/4/08). What that means requires a little background. The badly formed proteins, amyloids, had been seen in my bloodstream before the transplant, etc.
In the latest blood tests yesterday, there are no amyloids in my blood! In other words, my newly generated bone marrow is generating perfectly normal proteins...and none of the bad ones! This total remission is seen in about 50% of those undergoing the treatment. They've yet to see anyone relapse from this full remission.
On a similar note, more background. A few weeks before I went into the hospital, my kidneys were dumping about 7 grams of protein out daily where there should be none...or no more than a few milligrams. On my second day in the hospital, that number had gone up to 22 grams (about 1/2 the daily average intake of protein). This was an indication of a kidney problem and the reason I had to originally see the nephrologist who thought he was G-d.
In Monday's urinalysis, the protein output has now dropped back down to 6 grams. This is a very clear sign of the kidneys returning to normal. They're repairing themselves, flushing the amyloids that were causing all the initial problems.
On top of that, I now own a slightly used, almost bloodless, Trilumen Hickman Catheter that lived in my chest, carotid artery and heart for about 6 weeks. I'm looking for ideas on how to display it. Alice suggested I proudly display it inside an upstairs closet or attic. :-).
In a few days, I'll be back to my normal meds...with the addition of an anti-pneumonia drug taken 3 times a week. The nephrologist's diuretic is gone, along with its required horse-sized potassium pills. The Albuterol inhaler was causing tremors and is now gone. With my immune system almost normal, the other drugs go away in the next couple of days.
Yesterday, I was officially discharged from the transplant unit. I'll need to return to the clinic for followups but not nearly as often; my next visit takes place in about a month.
On our way out, we decided to stop by at the BMT ward, 7E. We walked in the door and were greeted by several nurses. More recognized Alice since I'd lost my hair since I last saw them...also, she's the one who brought all the bribes...chocolate, candy, roasted nuts, etc. One said she's the one who saw me pass out after riding the stationary bike. We had a few good laughs and then left. Unfortunately, we were too early to see the second shift. Still, it felt good to see those wonderful people who took such good care of me .
We ate dinner out last night to celebrate.
I still tire easily and seem to require more sleep than before but I know my body's been through a lot and still has a long way to go before it's back to 100% but there's light at the end of the tunnel (and it's not a train headlight).
Thank you all for everything. We couldn't have done it without you!
Jerry and Alice
In the latest blood tests yesterday, there are no amyloids in my blood! In other words, my newly generated bone marrow is generating perfectly normal proteins...and none of the bad ones! This total remission is seen in about 50% of those undergoing the treatment. They've yet to see anyone relapse from this full remission.
On a similar note, more background. A few weeks before I went into the hospital, my kidneys were dumping about 7 grams of protein out daily where there should be none...or no more than a few milligrams. On my second day in the hospital, that number had gone up to 22 grams (about 1/2 the daily average intake of protein). This was an indication of a kidney problem and the reason I had to originally see the nephrologist who thought he was G-d.
In Monday's urinalysis, the protein output has now dropped back down to 6 grams. This is a very clear sign of the kidneys returning to normal. They're repairing themselves, flushing the amyloids that were causing all the initial problems.
On top of that, I now own a slightly used, almost bloodless, Trilumen Hickman Catheter that lived in my chest, carotid artery and heart for about 6 weeks. I'm looking for ideas on how to display it. Alice suggested I proudly display it inside an upstairs closet or attic. :-).
In a few days, I'll be back to my normal meds...with the addition of an anti-pneumonia drug taken 3 times a week. The nephrologist's diuretic is gone, along with its required horse-sized potassium pills. The Albuterol inhaler was causing tremors and is now gone. With my immune system almost normal, the other drugs go away in the next couple of days.
Yesterday, I was officially discharged from the transplant unit. I'll need to return to the clinic for followups but not nearly as often; my next visit takes place in about a month.
On our way out, we decided to stop by at the BMT ward, 7E. We walked in the door and were greeted by several nurses. More recognized Alice since I'd lost my hair since I last saw them...also, she's the one who brought all the bribes...chocolate, candy, roasted nuts, etc. One said she's the one who saw me pass out after riding the stationary bike. We had a few good laughs and then left. Unfortunately, we were too early to see the second shift. Still, it felt good to see those wonderful people who took such good care of me .
We ate dinner out last night to celebrate.
I still tire easily and seem to require more sleep than before but I know my body's been through a lot and still has a long way to go before it's back to 100% but there's light at the end of the tunnel (and it's not a train headlight).
Thank you all for everything. We couldn't have done it without you!
Jerry and Alice
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