Happy Birthday to Emily, Steve, Carol and Tim!
Well it's the 15th of May and I made it through a week without needing to see a doctor! Yay!
I spoke with Lauren yesterday and they have a plan. They plan on bringing back into the hospital the week of May 24 for several rounds of phereses. That's where they will pump my blood into a machine that will pull out antibodies and then put the rest of the blood back into my body. Dr. Zaas said it's similar to dialysis.
The docs are hoping that the phereses, combined with more IVIG, rituximab and bortezimib will eliminate enough antibodies that my donor pool will open up some. There are pluses and minuses to pheresis but because we have tried the other drugs with no success, this is the next logical step. I'll need to be vigilant about infection and I'm thinking I probably won't want to be around sick people at all (at least not intentionally).
I'm sort of looking forward to the treatment. I really have a good feeling about the success of the treatment. Because I seem to be having setbacks (hospitalizations) I think everyone (team, Lee and me) believe it's once again time to take the next step. I'll keep you posted as I get more info.
This weekend Lee is up at Amy and Michael's house helping them build some outdoor furniture. I think that's great! Amy found a website: http://www.knock-offwoods.com/ that provides plans for wood furniture and it's for women! Lee's going to help provide some instruction so that maybe Amy can take on the next project alone. I, meanwhile, am having a nice day at the apartment with Missy. It's not often that we don't have something to do and I like the relaxing day. I've cleaned the bathrooms - yes that takes me hours! - and the kitchen and I'm slowly doing some laundry and then I'm going to read ;-)
Next weekend Amy, Michael, Lee and I are going to see the Durham Bulls play baseball. I'm really looking forward to that and I'm sure I'll take pictures and share them.
I hope everyone has a wonderful weekend and I'll write again soon.
Love to all,
Lee, Wendy and Missy
Saturday, May 15, 2010
Monday, May 10, 2010
Starting May
I hope everyone had a great Mother's Day!
Well, let's see…May started out sort of fun and festive...another dry run last weekend and a four-day stay in the hospital this weekend!
Prior to the transplant call, I had not been feeling very well (short of breath and just sort of bad) so the doctor put me back on a prednisone taper to see if that would clear things up. When I got the call to go to the hospital I at first just thought Emily (on-call coordinator) was just checking to see how I was feeling!
We didn't call everyone about the transplant call because the coordinator said it would very likely end up being a dry run because the antibodies didn't appear to be a very good match. She said the surgeon wanted to "give it a try" anyway. Well..it didn't match and home we went. The good thing is we had learned a bunch from the first dry run...
Amy, Lee and I decided not to send out the big announcement about the call because I was told it probably wouldn't amount to much. We promise to call if the lungs looks promising!!!
So on home we came. As it turns out no one was able to use those lungs -- that makes me so sad :-(
Lee and I went back to rehab on Monday and by Thursday I was really feeling cruddy again. I called Lauren to see if I should increase my prednisone again. Instead of that she wanted me to go to clinic to see Dr. Zaas who was there that day. I should have known...
Back to the hospital for four more days and nights of IV Solumedrol (makes prednisone look like baby asprin!), antibiotics and nebulizer treatments. Everything together worked well and I got to come home tonight after taking another IVIG treatment (remember those from October?).
The big down side to this little jaunt to the hospital? I am now (hopefully temporary) diabetic and need insulin to manage my blood sugar levels. We can all say thank you to Solumedrol and Prednisone. Prednisone can definitely cause diabetes but Solumedrol is almost guaranteed to do it...it really is strong stuff! I was on it every 6 hours around the clock and after the first dose they came into to check my blood sugar. I thought that was sort of weird because I'd never had that done before. Well the number was 226 and I thought that's nice...doesn't sound very high does it? About an hour later the nurse came in with an insulin shot. I was soooo surprised. My blood sugar has always run on the low side and I've lost all that weight and Lee and I are watching what we eat. That's when I was told all about this sad side effect of Solumedrol.
I do have to say that Solumedrol worked really well and for that I'm grateful. I guess I shouldn't complain about needing insulin if the offset to that is being able to breathe! I've found that I now measure lots of things I might have complained about or refused against the impact to my breathing. If it helps my breathing then it becomes higher on my list of things to do (good, bad, fun, nasty - it just doesn't matter)!
Dr. Zaas had me placed on "7800" which is the Pulmonary and Kidney floor of the hospital. Both pre and post transplant patients come here for treatment and it is the "step down" unit from the ICU after transplant. It is run very softly. I don't want to say "loosely" because it might seem like they are inefficient. That group is one of the most effective team of nurses and staff that I've ever witnessed. They have answers to questions, they don't make you wait for things, they encourage you, they have a very low nurse to patient ratio AND I get to wear my own pajamas! I was so jazzed - none of those one-size-fits-a-giant gowns for me! Here's a picture from yesterday when Amy came to see me. She brought me my Mother's Day gift. Notice I have my laptop up here too. Full cell phone and internet access in each room! Hmmm….is this the Hilton? JK :-)
So now we are home after stopping at Walgreens to pick up a glucose monitor, some test strips, some lancets (fufu word for exacto blades), alcohol swabs, and syringes. I just have to say - one look at me and you'll quickly see I never used street drugs. I couldn't figure out how to get to the plunger. It had this big orange cap that didn't look like a cap. I kept trying to move the cap in and out. I'll get the hang of it and it will be fine after a few more tries. Who knows maybe by then my blood sugar numbers will go back down so I won't need to draw blood!
So now we are back to our routine…eat, sleep, exercise and breathe. It never gets old as long as breathing stays in the equation!
Love you all,
Lee, Wendy and Missy
Well, let's see…May started out sort of fun and festive...another dry run last weekend and a four-day stay in the hospital this weekend!
Prior to the transplant call, I had not been feeling very well (short of breath and just sort of bad) so the doctor put me back on a prednisone taper to see if that would clear things up. When I got the call to go to the hospital I at first just thought Emily (on-call coordinator) was just checking to see how I was feeling!
We didn't call everyone about the transplant call because the coordinator said it would very likely end up being a dry run because the antibodies didn't appear to be a very good match. She said the surgeon wanted to "give it a try" anyway. Well..it didn't match and home we went. The good thing is we had learned a bunch from the first dry run...
- Always tell them you've just eaten...that way you get to put food in your stomach to tide you over for a potentially very long time.
- Make sure and bring laptops, cell phones, books and Sudoku. It gets really boring really fast!
- 3. Bring food and water for those that can partake...it keeps them happy!
- 4. Take your time getting there!!!!
Amy, Lee and I decided not to send out the big announcement about the call because I was told it probably wouldn't amount to much. We promise to call if the lungs looks promising!!!
So on home we came. As it turns out no one was able to use those lungs -- that makes me so sad :-(
Lee and I went back to rehab on Monday and by Thursday I was really feeling cruddy again. I called Lauren to see if I should increase my prednisone again. Instead of that she wanted me to go to clinic to see Dr. Zaas who was there that day. I should have known...
Back to the hospital for four more days and nights of IV Solumedrol (makes prednisone look like baby asprin!), antibiotics and nebulizer treatments. Everything together worked well and I got to come home tonight after taking another IVIG treatment (remember those from October?).
The big down side to this little jaunt to the hospital? I am now (hopefully temporary) diabetic and need insulin to manage my blood sugar levels. We can all say thank you to Solumedrol and Prednisone. Prednisone can definitely cause diabetes but Solumedrol is almost guaranteed to do it...it really is strong stuff! I was on it every 6 hours around the clock and after the first dose they came into to check my blood sugar. I thought that was sort of weird because I'd never had that done before. Well the number was 226 and I thought that's nice...doesn't sound very high does it? About an hour later the nurse came in with an insulin shot. I was soooo surprised. My blood sugar has always run on the low side and I've lost all that weight and Lee and I are watching what we eat. That's when I was told all about this sad side effect of Solumedrol.
I do have to say that Solumedrol worked really well and for that I'm grateful. I guess I shouldn't complain about needing insulin if the offset to that is being able to breathe! I've found that I now measure lots of things I might have complained about or refused against the impact to my breathing. If it helps my breathing then it becomes higher on my list of things to do (good, bad, fun, nasty - it just doesn't matter)!
Dr. Zaas had me placed on "7800" which is the Pulmonary and Kidney floor of the hospital. Both pre and post transplant patients come here for treatment and it is the "step down" unit from the ICU after transplant. It is run very softly. I don't want to say "loosely" because it might seem like they are inefficient. That group is one of the most effective team of nurses and staff that I've ever witnessed. They have answers to questions, they don't make you wait for things, they encourage you, they have a very low nurse to patient ratio AND I get to wear my own pajamas! I was so jazzed - none of those one-size-fits-a-giant gowns for me! Here's a picture from yesterday when Amy came to see me. She brought me my Mother's Day gift. Notice I have my laptop up here too. Full cell phone and internet access in each room! Hmmm….is this the Hilton? JK :-)
So now we are home after stopping at Walgreens to pick up a glucose monitor, some test strips, some lancets (fufu word for exacto blades), alcohol swabs, and syringes. I just have to say - one look at me and you'll quickly see I never used street drugs. I couldn't figure out how to get to the plunger. It had this big orange cap that didn't look like a cap. I kept trying to move the cap in and out. I'll get the hang of it and it will be fine after a few more tries. Who knows maybe by then my blood sugar numbers will go back down so I won't need to draw blood!
So now we are back to our routine…eat, sleep, exercise and breathe. It never gets old as long as breathing stays in the equation!
Love you all,
Lee, Wendy and Missy
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