Chris had another
Echocardiagram today with Dr
Falk to get his most recent perspective on her heart status. He compared the results with the November echo and saw no change, either good or bad. He is waiting to get the May echo from BU and then will compare that to the one today to see what has really occurred over the last 8 months or so. This will give us the widest possible spread of dates and provide an indication of how things have changed. The May echo was her first. So really not any significant news other then we remain concerned about the overall status of her heart and its ability to keep up with an active lifestyle.
Chris did go to Yoga again and she really feels like this is good for her. She complains that she feels very tight and yet she is pleased with her strength. Hopefully she will keep this up, as well as more
cardio exercise. The weather has been very bad here and this limits the outside walks of course.
Last week I was in Rochester, MN for a business meeting and I made a trip to the Mayo Clinic which is really the only other
amyloidosis center in the world, or at least the US. Rochester is a very funny place as it is about 90 miles from Minn./St Paul and really has two major employers: Mayo and IBM. The Mayo clinic of course is world renowned for it's expertise and incredible staff, but you have to wonder how it ended up in Rochester. The facility itself is amazing. I am not kidding when I say that the lobby is a beautiful three story atrium and there is a man in a tux playing a grand piano. I felt as if I was in the Four Seasons hotel. It must be hard for those without health insurance or needing to cover ongoing medical bills to see this use of money, but it certainly was an incredible place. What I really wanted to see was the
Amyloidosis Center, just to see what it looked like compared to BU. We had heard of many patients who had been to Mayo for clinics or evaluation and thus it would be interesting to see it. I asked at the front desk and of course they had never heard of
amyloidosis and had no idea where to direct me. Then I asked where the Hematology dept was and they said the 10
th floor which I then proceeded to go investigate.
I was looking for a picture of the Center, just a nameplate or a logo or something that indicated Mayo and
Amyloidosis as I wanted to give it to Stephen for his fund raiser web site (
http://chrisjourney.com/) A woman that worked in the Hematology dept asked if she could help (as I wandered around aimlessly) and I explained what I was looking for. She went back to the inner sanctum of the hospital and returned saying that she had asked one of the doctors, Dr. Morie
Gertz, if he knew of a sign or poster or something that I could take a picture of and the answer was simply "nope, nothing like that". Oh well. Interestingly as she mentioned Dr.
Gertz' name, it hit me that I had read many many publications of his in my quest to be the expert on this disease. I
brazenly asked if I could quickly meet him, just to say hello and tell him how appreciative I was of his work (and maybe get a quote for Stephen's bike ride). She went back to ask and returned with a curt "he is unavailable". My intentions were very honorable, but oh well, it just did not work out.
So our next major step is to hear about the comparison of May's echo with the one today with Dr
Falk. Ideally we will get some important insight into the real level of her ejection fraction. This is a big frustration to Chris and I as we really do not have consistent answers. Hopefully we will learn more in the next few days.
Chris has recently heard from a number of friends who had not heard of her illness. She is really glad to hear from them and as always I encourage everyone to please feel free to call her. The support from all just continues to energize her. Thanks to all who have reached out in so many ways.
Chris and her sister Debbie in August of 2007 in NH. We had no idea what the next 12 months would bring at this point.
June 2008 - Getting ready to start the chemo. It took about 15 minutes to take it all. Notice the "pic" line inserted in her chest. The chemo was given via the line. The chemo is so strong that it can burn through veins close to the skin, thus Chris had to keep ice packed in her mouth for about 20 minutes to avoid severe sores. This is the equivalent of 6 months worth of oral chemo in two direct shots over 2 days.
The actual chemo, melphalan, which was given via the pic line (catheter) that had been inserted into her chest for about 6 weeks. This is the stuff that almost kills you but in the end is your best friend. Chris took the maximum (but highest risk) dose.
One of two bags, each containing 5 million stem cells. These are collected in a process similar to dialysis and separated with a centrifuge. The stems cells are collected prior to the chemo, then replanted a few days afterward.
They very carefully wrapped her stem cells up and transported them in this box to the blood bank for freezing. They can be stored for 10 years. In her case they replanted half of them back into her bone marrow. The other half, about 5 million are still at BU.
July in Boston, about 21 days after the chemo. Chris was under 95 pounds and unable to walk more than about 10 feet at a time.
On the deck in NH in August. Very frail, but happy to be done with the treatment and very slowly starting to feel a bit normal again.
Chris with Stephen, January 2009.
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