Saturday, May 9, 2009

Day +102 - New blood type!

I didn't realize it had been almost 2 weeks since I last posted. Well, the blood bacteria I tested positive for was negative last week, but the clinic still had me start on the Vancomycin antibiotic anyway. They called me the day after my last post, when I thought I would be off the hook and that we would just wait for my next test results. Oh well. So I'm on the "bottle", twice a day. This is the little baby bottle IV infusion kit that doesn't require a pump. I can stick it in my pocket and forget about it. In fact, I've fallen asleep with it a couple of times.

Last Wednesday was my official discharge date from the SCCA. Woohoo! Next Tuesday I have a clinic appointment with Dr. Goldberg, my primary oncologist. Unfortunately, the infectious diseases doctor recommended that I stay on the Vancomycin antibiotic for an additional 3 more days, which means that I didn't get my Hickman taken out last Wednesday when I thought I would have. Oh well. So I'm doing the IV infusion twice a day and it will finish up on Monday. Then Tuesday I should have my last blood draw through the Hickman, and then *cross fingers* Dr. Goldberg will take it out.

During my last SCCA visit, the doctors prepared a summary report and included lab x-rays on CD so that I can hand-carry everything to Goldberg. They also sent duplicates to his office. I love how everything is so organized. I'm happy to be leaving the SCCA but will miss the level of professionalism there. I'm not sure if I got the same level of individual care that I get with Goldberg since the SCCA doctors rotated off the transplant team each month, and so the new doctors had to learn about me all over again, but everyone was competent and professional and always had time to analyze closely what was going on with me at the time. Since everyone working on the transplant team is in such a specialized field and the fact that they do over 400 transplants a year, they've pretty much seen everything, so Johanna and I have been confident in their recommendations since they can back it up with real patient data. I'm fine with being a statistic and getting this treatment or that treatment based on the symptoms when there are thousands of previous cases before me. I had a lot of emotional experiences there and will be reminded each time I see the building from the freeway.

Oh, and during my last clinic visit, a representative from the blood bank came by to say that my blood type had officially switched to A+, the donor's blood type! My old blood type was O+. He said that I was one of the fastest patients to switch blood types, and that most normally don't switch before they leave the SCCA. Cool! That means that the majority of red blood cells now running through my veins were grown from the donor stem cells. Red blood cells normally live for about 6 months, so the new cells are doing a good job of quickly replacing the old, buggy cells. Other good news is that I only had to have 2 blood transfusions after the transplant, which is good since it means my risk of iron overload is greatly reduced. Too much iron in the body can be a serious problem which can occur when patients require a lot of red blood transfusions. My donor must be one tough woman to have such hearty stem cells. Way to go stem cells!

By the way, I get claims notices from my insurance company every few days detailing all the payments they are making on my behalf. I don't usually like to talk about money on the blog, but one of the claims in this last set caught my eye. Buried among the dozens of sheets of paper was a single line item for "Hospital room and board: 1/27/09 - 2/15/09". This single line item was for the 22 days when I was in the hospital for my transplant. The amount next to it: $96,000. Can you believe that?? $4300 a night sure is one fancy hotel room. The total amount for those 22 days was $152,000 which includes all the labs, x-rays, tests, etc. Thank god for good health insurance. Though I've already maxed out the $250,000 lifetime transplant limit under my insurance, the standard amount, which is why we made sure to get secondary coverage since the SCCA told us up front that we would go over the limit. Since I'm uninsurable now, I got secondary coverage through WSHIP, the WA State health insurance pool, which guarantees coverage to people who are denied elsewhere. Yes, I actually had to apply to a random insurance company for the sole purpose of getting denied, so that I could use the denial letter in my application to WSHIP. Insurance companies seem to use a standard form to determine your health and eligibility. What's funny (sort of) is that the first page lists a bunch of diseases, and if you answer "yes" to any of them, the directions say to just go ahead and skip filling out the other 12 pages of forms, since that "yes" answer makes you uninsurable right off the bat. It's scary. Anyway, WSHIP is expensive and a pain in the ass to work with, but I'm happy to have them. I try not to think too much about the money involved since it can be pretty overwhelming. It's unbelievable how much health care costs these days.

That's it for now. I've been feeling pretty good lately. The only things that make me feel bad lately are the medications. I've recognized that I'm pretty much useless between the hours of 10am and 2pm. I have barely any energy, even with coffee, and it takes a huge amount of effort to get motivated to do anything. This is mainly because my daily steroid dose is almost down to 0 (hooray!), but my adrenal glands are "probably all shriveled up" according to my doctor, which means my own body isn't producing enough to keep me going. I'm also very sensitive to light because of the Voriconozole, so everything ends up seeming really bright and I find myself squinting all morning. After 2pm, I get my energy back and then I feel totally normal for the rest of the day. In fact, these last few weeks Johanna and I, along with my parents and our friends, have been painting and fixing up my condo downtown since my last tenants just moved out. It's a herculean task, since 2 of the rooms had wallpaper which my parents laboriously pulled down, and we've been at the condo painting walls, ceilings, doors, trim, closets, you name it, pretty much every day for the last 2 weeks. It's nice to be at the condo again and it's been a nice distraction and has helped give me back some energy for a change.


obscurity said...

Doood. I'm so glad that you are feeling so well, its amazing, and you are inspirational. Just today, when running (training for my LLS 1/2 marathon!) I was about to give up ... and then I was like ... Stever wouldn't give up ... and then i walked for a quarter mile anyhow. But then I ran!

Anyhow, here is an actual question ... what is the protocol regarding childhood diseases? I mean - since your immune-memory is wiped out, do you need to get vaccinations for MMR? Can you get chicken pox again? How's that all work?

Steve Rider said...

@obscurity: Ha ha, I'm glad I could offer some inspiration. I walked today but haven't been walking as much. When is your 1/2 marathon?

At 1 year I'll get vaccinations for diptheria, tetanus, polio, pneumococcus, and hepatitis B. At the 2-year mark I'll get shots for measles, mumps and rubella. And yeah, I can get chicken pox again. In fact, I'm taking a drug now to prevent chicken pox and the measles.

George said...

w0w it's been 100 days. That's much more exciting than when my little green bug ran over the 100k miles moment. But just like that event I knew your odometer was coming and missed the moment as well :(

Good news for you and Family!! Good news for me... I only have one class left until I get my Masters. Good News I still have a job.

Good News... I'd be looking in Seattle if I lost it.

yes Chicago too B-Rye.. B-Roni

I'm kind of useless every day from 11:30 to 12:30. But that's when I have lunch. And I'm very sensitive to the sun. We are sounding more and more similar each day.

George said...

Hey man... been trying to call you... what is up??