July 11 - Home, Sweet Home

At 1:53 this afternoon, Chris got her walking papers to come home. It was a long day at the center, with lots of instructions, warnings, responses to my long list of questions, and of course some hugs. We got home 35 minutes later and it was a fantastic feeling. I can't describe the feeling of sitting in the house, with the family, with the pets surrounded by our own belongings. Chris could not get out of Boston fast enough, she didn't even yell at me to "slow down" like she usually does.

She has detailed instructions on diet, driving, pets, immunizations, alcohol, gardening, and even diaper changing. Clearly the risk of infection still remains. The metric for mortality rate is tracked for 100 days post replant, and we are on day 21, so we have another three months or so of being extra cautious. Limited exposure, no crowds, no babies, no cat litter, etc. She will start an immunization process over the next 12-24 months (measles, polio, rubella, etc.) that will slowly rebuild her lost immunity system.

We go back for three days of tests on December 8th. This will be very scary as it is then that we will learn what the hematological response was. Complete, partial, or none. As I said, we want HCR. I have received some notes and emails that said HCR stood for: Hooray, Chris Recovered or Hot Chris Reborn. Her numbers today were:

Measurement / Chris / Normal Range / Result
WBC (white) /4.7/ 4.0 - 11.0 / Normal
RBC (red) / 3.6/ 4.2 - 5.4 / LOW
HGB (Hemoglobin) / 11.5/ 12 - 16 / LOW
Platelet / 116/ 150 - 400 / LOW but getting closer all the time

I asked the team today about 4 dozen questions that I had written down. All kinds of questions about Chris' heart, her lungs, average recovery time, reduction in her heart wall, edema, appetite, exercise, etc. Suffice it to say I drove them crazy, but I walk out very comfortable that I know almost all a civilian could know about amyloidosis. I have read every research paper ever published by the BU team and have arranged email alerts for any new publications referencing them or the center or the disease. I also had them print out graphs of all her blood counts over the last 30 days. I asked for a digital version (on a dvd or cd) of all of her charts , but they told me paper only (I tried).

Chris got home, sat on the couch, and could not describe how happy she was to be home. She lasted about 15 minutes before declaring she needed a nap and wanted to get into her own bed. I have not seen her move that fast in months. She really needed to fell at home, and nothing does more than crawling into her own bed. Our dog went crazy when we got home, but Chris can't pet her, so it drives them both crazy.

I've avoided bringing up the subject of Friends the last few days, but at this point, I kind of consider watching the seasons like running a marathon. I'm at mile 21 (season 8) and I can't quit now. I've come this far, if I can just hang on a little longer. My body may not hit the proverbial "wall", but my brain is pretty close to exploding. Chris and I are the little engine that can: "We think we can, we think we can" finish all ten seasons, but trust me, this hurts.

My kids believe that they are masters at getting their teachers "off topic". They are so proud when they get their teachers to wade into the weeds in class and never get to their lesson plan. Well, they have accused me of getting "off topic" here on the blog, and editorializing on some issue not relevant to Chris. I agree that has happened, but this whole experience has just been an incredible learning process which I have soaked up like a sponge. The disease, the medicine, the interactions, the hierarchy, the personal touches, the surprising lack of a well defined treatment approach, it is all just amazing. In the next week or so, I will expound on my Top 10 (like David Letterman's) Lessons Learned. This will be for the benefit of my own mental therapy, but maybe someone can benefit from it. Chris benefited from Jen's reaching out (see the very first post here about the newspaper article) to the press and TV, and maybe one person will benefit from the insane ramblings of my lunacy. See there I go again, off topic, sorry.

So Chris has completed one leg of her journey to health. It was an extremely bumpy ride, with many potholes, speed bumps, flat tires, ground delays, etc, but she has reached this stage of the long journey successfully. Not a single infection, no mouth sores, no trips to the ICU. She does have incredible weight loss (97 lbs. /44 kilo's), but now our goal it to fatten her up, build the muscle tone she had, and get her back to a more normal life.

More updates (and possible meanderings) tomorrow, but for now, tonight, at home, all is good for this wonderfully tough ladie. As I have said before, she is my hero! And we are home, sweet home!!!