Tuesday, March 29, 2011

Day +106

A lot has changed over the last month, especially in terms of Chris' health.

Since I am his wife I might be biased, but I think
Chris is looking pretty good! Look at that hair!

After having such a positive appointment last month, Chris went back to work on March 7 (less than three months after his transplant). Since his doctor recommended that he take a graduated approach, Chris worked three days that week, four the following week and then worked a full week last week. Really, looking back, we figure that Chris could have just gone back full-time. He has never really felt that tired (no more than usual after a work day) and has been able to jump right back into things.

A lot of his clients (Chris works in engineering) didn't know that he had been on a leave of absence. Since the majority of Chris' construction projects take place in the spring and summer, it is not uncommon for Chris not to meet with anyone during the winter. On his first week back he met with one of his main clients and they commented on his lack of hair by asking if Chris had lost a bet. I am assuming this because they had no idea what Chris had been through and thought his buzz cut had been a personal choice. The protective wife in me, however, would like to give them a hard time for being so insensitive. I think he looks pretty cute.

Chris is still working out, but has slowed it down a bit since his knee started to hurt him. He was up to doing 80 minutes on the elliptical, but is only doing weights until his knee is back to normal. The knee that hurts is, of course, his left knee (the leg that was affected by his MS).

On Sunday, Chris went in for his monthly IVIG treatment and since his regular BMT appointment was today, they ended up doing some blood work, so that we would have his results for his appointment.

Despite feeling better, Chris' bloodwork through us for a loop. We had already been told that they were going to discharge Chris from the BMT program and send him to the MS clinic. However, when they went to check his bloodwork the whole computer screen was full of red numbers. All of Chris' counts were MUCH lower:

White blood cells: 2.1 (normal 4.3 -10.8)
Platelets: 77 (normal 150-450)
And then remember that we stopped listing his neutrophils because they were so high that it didn't matter, well they had crashed down to 0.8 (1.8 -7). Chris wasn't allowed to leave the hospital until they were 0.5.
So needless to say we were a little concerned at first.

They retested Chris' blood again today and his white blood cells and platelets were higher than Sunday (3.5 and 85) and we are still waiting to get his neutrophil count, which will have likely risen too.

His doctors weren't 100 per cent sure why his counts were low. The one explanation is Chris had a mild allergic reaction to my paren't dog when we went to visit last weekend, and if he had any inflammation his body could have attacked and caused a drop in his counts. But since they aren't sure and Chris' counts are still low, we did not get to leave the BMT program and will need to wait to transfer to MS clinic.

The main reason we wanted Chris to be transferred to MS clinic is that we are really excited for him to have an MRI, so that we can see if there are any early signs of it working. Chris had an MRI of his head right after of the transplant when they were concerned he might have a brain infection, so we will really be able to see if anything has progressed since the transplant. While Chris has not had any visible relapses, it is nice to have the proof that this procedure was really worth it.

In other news, there have been a couple of exciting announcements in MS research that we thought we would share for those who are interested:

- The Canadian government launched a national monitoring program for MS patients in Canada to better gauge how MS progresses and which treatments work and don't work. It will be really interesting if this system will monitor Canadians that undergo this treatment.

- The first oral MS treatment, Gilenya,  has been approved in Canada. While not a cure, this is a disease-modifying drug that has been shown to reduce the relapses by 54 per cent. While Chris is no longer on any treatment plan, this news is really exciting for MS patients that require and respond to disease-modifying treatments as I remember how much Chris hated taking three needles a week.

Chris' doctors are still working on their report on their clinical trial. While Chris will not be included in the report, he did undergo the identical protocol, so we are really interested to see the report (and will be posting it on here!) to see how successful it was for everyone else.

It will also likely get more publicity for this procedure, which I think has gone under the radar. It wasn't until we were desperately searching the Internet that we find out about this procedure and even then, it was not clear that this was an option for Chris. There has been a lot of media coverage on the CCSVI procedure, so it would be great if this procedure became more well known to allow MS patients to understand their options

1 comment:

  1. I hope the transplant works for Chris. I agree that I have not heard of this procedure but a lot about CCVSI.