Sunday, April 26, 2009

The Blog Effect

We have been mostly home now for a month. I keep running into people locally who ask, “How is it going?” And when I start to say, “Well we are doing better now, but we had a difficult winter…...,” inevitably they tell me, well, I know all about it, I read the blog. Either that, or they saw the article in the Queensbury Citizen, and they read the blog.

This blog has been read (diligently) by more people than I could have imagined. The feedback has been wonderful. It helped people who really cared keep connected throughout the whole ordeal. We enjoyed all of the comments, for those of you who posted. And for those of you who didn’t, I want you to know that many people have told me they were unable to comment. I don’t know why that is, but you are not alone.

We knew there were a lot of people out there pulling for Emily, and concerned about her progress. The extent of that is continuing to dawn on me. The outpouring of support really has meant a lot to us.

Twelve Weeks - Busy is good

We've had three weeks without any medical intervention (except for one blood draw at the local hospital). It has allowed Emily to get into a regular schedule. It seems the busier she is the better she feels. She ends each day exhausted, but has been pretty happy. She is just about caught up in Math, and close behind in Spanish and Chemistry. English and History will wait for the summer.

Here's a typical day:

7:30 pre-meds, and some food
8:00 meds
8:15-9:15 Cardiac rehab at the hospital
11:00-2:30 School
3:30 - 5:30 Tutoring (two courses/day)
6:00 - 7:15 Coaching swimming
7:30 - pre med and eating
8:00 meds
8:00 - bed Chill-lax

On other days she is doing horseback riding or dance.

It is great to have our busy girl back.

Saturday, April 11, 2009

Week 10: Back in the saddle again...

A hard week ended well. We got back from Boston late Tuesday after the heart biopsy and IV IG treatment. Emily seemed tired and queasy on Wednesday, but Thursday was full-blown nausea, with cancellation of tutors and not going to school. She began to perk up a little on Friday, and woke up feeling pretty good today (Saturday, 10 weeks post-transplant). She went to the barn to try her hand at sorting the cattle--a game where the kids have to pick out cattle from a herd and move them into a pen one at a time. It was fun, and she did it until she got tired. The rest of the afternoon she's been playing a multi-player computer game with her brother--Jeff's home for Easter.

Wednesday, April 8, 2009

She's a Zero...

...and that's a good thing. Biopsies are ranked for rejection from 0-3, with 3 being acute rejection and zero being none. Emily's biopsies the last two times were 1's. The doctors were not concerned, saying that it is normal to have some white cells clustering around the myocytes "cleaning up" from the trauma of transplanting, but a zero means that there is no sign of rejection. Yesterday's biopsy was zero!

Our concern the past three weeks has been that her blood showed donor specific antibodies, which could be a precursor to rejection. They aggressively treated the donor specific antibodies with IV Immunoglobulin (IG) and oral prednisone. the IV IG made her very sick last time, so were were worried about a repeat. They gave her a different brand of IV IG and we really pumped up the tylenol.

She got through the biopsy and IV IG ok and we made the long drive home last night. She slept through the night, except for when we woke her up to take tylenol. She felt ok this morning and went to cardiac rehab at the hospital this morning. She came back from that tired and then nauseated. It wasn't as bad as last time but she opted for not going to school this afternoon. We hope we don't have to keep doing the IV IG but the doctors really like its effects.

Saturday, April 4, 2009

9 Weeks: "My life is getting a little more life-like"

This is the first week we have not had to go back to Boston and avoiding the medical management is a major step toward normalcy. Emily went to one class a day at school (Advanced Chemistry), and was tutored in the rest of her classes. The work load has been a lot, and although she has felt a little overwhelmed, she has worked hard and knows that at least a couple of her courses will get done in June and the rest will get caught up by September.

She has been going to cardiac rehab at the Glens Falls hospital, where she is the only teenager they've ever seen there. She's quite a hit with the seniors, and they gasp when they see how flexible she is. The exercise does tire her out though, which points out the need for this activity. We don't know how much is due to the de-conditioning over the past year, the surgery, or the underlying mitochondrial condition that still effects all her muscles but her heart.

The nausea that has so tortured her for the past month is partially abated, and she has been eating better. We look with dread to going back to Boston on Tuesday. The biopsy would be bad enough, but after that she is slated to have another IV Immunoglobulin treatment. That is the treatment that made her very sick three weeks ago. They will try a new formulation and hope that it won't be as bad. We also hope that her blood will not show any more antibodies to the donor heart so that she won't have to go through this again.

Deb and I have been trying to get back to work. We think that our stopping work in January may be responsible for the downturn in the global economy, so we clearly need to fix that.