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.
http://www.thestar.com/news/canada/article/959100--ottawa-to-set-up-national-ms-surveillance-system?bn=1

- 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.

http://mssociety.ca/en/research/medmmo_20110310.htm

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

Day 32 - Hair today, gone tomorrow

A few days ago Chris' hair finally started to fall out. I guess when I originally envisioned Chris losing his hair, I expected him to wake up one morning and he would just be bald (I am not sure where his hair would have disappeared to, maybe the "hair fairy"?). Or maybe he would have a shower and it would just all wash off. Now that I am writing this down, I realize how silly it sounds.

Instead, Chris has been slowly shedding. We noticed at first tons of hair lying on his pillow, then on his shirt, then on his face and now basically everywhere he sits. I essentially just follow him around with a lint brush. I never realized how much hair he has though, because even though he has lost thousands of hair, he still has a slightly thinner head of hair.

The good news story of all of this? I now have evidence that Chris steals my pillow at night. For years, Chris has denied that he steals my pillow away from me at night, but now that his hair covers half of my pillow in the morning, I have forensic evidence that says the contrary.

We know that a lot of other people with MS are now following our blog, so we thought we would post a couple big news stories that have happened this week for those who are interested.

- On Tuesday, the Collège des médecins du Québec (CMQ), a body that represents Quebec doctors, advised MS patients to not have the "liberation treatment." The body stated that scientist don’t know whether the blocked veins cause the disease or are a symptom of it, and whether they have anything to do with the onset of symptoms.
http://www.theglobeandmail.com/news/national/quebec/quebec-mds-warn-against-controversial-ms-treatment/article1792585/

-CTV followed up with a number of Canadian patients who have underwent the "liberation treatment" in other countries with negative results
http://www.ctv.ca/CTVNews/Health/20101112/ms-liberation-stents-101113/

- A summary of an international conference on the treatment and research of multiple sclerosis that took place in Gothenburg, Sweden on October 13-16 was posted on the MS Society website.
http://mssociety.ca/en/research/medmmo_20101102.htm

Day 19 - CCSVI

Almost exactly a year ago at this time, we started getting emails and comments from friends and family about  a new breakthrough in MS called Chronic cerebro-spinal venous insufficiency (CCSVI). In November 2009, it was reported that an Italian doctor, Paolo Zamboni claimed that MS was not an autoimmune disease and that it was due to malformed or blocked veins in the neck that couldn't adequately drain blood from the brain. Zamboni claimed a buildup of iron in the brain ensues from this blockage, causing vertigo, fatigue, vision problems and loss of sensation. He also announced a new "liberation" procedure that involved using a form of angioplasty — injecting and inflating balloon catheters into dilated veins to increase blood flow.

Since we announced that we were doing the stem cell treatment, a lot of people have asked us if we had considered doing this liberation treatment instead.

To be honest, before we even knew about the stem cell treatment, we tried desperately to get Chris' neck scanned to see if he had CCSVI. Unfortunately, in Canada and the United States this scan is not covered as it is considered experimental. Last May, after trying for months, we eventually were able to get Chris on a waiting list to have his neck scanned (if it was confirmed that he did have it, we would need to pay upwards of $20,000 to have the liberation procedure performed in another country such as Costa Rica, Germany, India and Kuwait), but to this day we have yet to hear anything. There are trials now going on in Canada and the United States, but since there are approximately 75,000 Canadians with MS, the spaces filled immediately.

Now, after learning a lot about both treatments, there is not a questions in our minds that we made the right decision. Since the announcement of this treatment, several different trials have come out with mixed results.

A large ongoing study in Buffalo only showed that 62% of MS patients had CCSVI, but so did 26% of the healthy participants, as well as 45% of participants with other neurological disorders. A medical centre in Amsterdam has found no difference between the veins of MS patients and healthy participants. Also, while many patients diagnosed with CCSVI have undergone the treatment have reported great results, there are patients who have undergone the procedure and have not felt any improvements. This procedure is also relatively new, and there are no research on the longterm effects. We definetly understand why so many people are spending money to get it done. When we had no other options we were definetly planning on doing it. It just wasn't the right choice for us.

In other news, Chris is still doing well. We are expecting a call from the nurse coordinator tomorrow to see if there is anything else Chris can take to bring down his hives on his arms (yes, they are still there!).

And on a much lighter note, here are some photos of our Halloween costume last night. We were bikers and obviously really tough ones.