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April, 2008, coming up on my third anniversary. I am watching with
awe as more and more people are deciding to have a stem cell
transplant. I am well, and continuing to resume a nearly normal life.
September 2007. I have passed my two year anniversary. In April
I conducted a performance of Mendelssohn's "Elijah." It's a
grueling work, performed with a chorus of 60 and an orchestra
of 30. It was something I never thought I would be able to
do again!
My doctor is very pleased with my progress. All the doctors
marvel at the improvement. My pulmonary numbers continue to
rise. I attend Pilates classes three times a week. The doctors
feel this is helping the breathing. I would say I have returned
to about 80% normal. No one told me that, it is just how I feel.
Where can I go from here?
January, 2007. I am particularly excited because one of
my mentorees is being transplanted on Friday. He has
been in Maine with Dr. Traynor since December 26. I am
hovering over this like an expectant father. It is
great to compare notes with him. He and I have been kicking
around the idea of other ways to help potential
transplantees bring their goal to fruition. I'll have to
wait some time until he is feeling up to planning this,
but it gives him something to work for.
I directed a production of "Amahl and the Night Visitors,"
by Menotti. Our church does it every 12 years, we realized.
What I realized was that it took a lot out of me. I stayed
very quiet for about 4 solid days, and now, three weeks later,
I am feeling normal again. I did not get sick, praise God,
and I have been taking care of myself intensely.
October, 2006. Please go to the clinical trials section
and read current update.
It has been a few months since I have updated this site.
I have been speaking to differentgroups, appearing at
Scleroderma walks, being interviewed by newspapers,
being filmed by PBS—it has been a very busy time,
and I have been very excited to be a part of this.
In fact, it has been a very exciting year.
Today, August 3, 2006 is my one year anniversary.
I am very well,
and I am very glad I participated in the ASSSIT trial,
and very grateful to my doctors for finding the trial , and
for performing this trial as well. I am paying the blessings
forward by helping those who are interested or at least
want to be informed about stem cell transplants, to find
the trial that is right for them.
This time last year I was on oxygen 24/7. But quickly after
the transplant, I was able to wean off the oxygen. By 4
weeks I was no longer using a supplemental oxygen during
the day, and at about 8 weeks, no longer using it at night.
My energy gradually became stronger and stronger.
My attacks of Raynauds became less and less.
I made cookies in December…I haven’t done that in about
10 years! I made dinner for 10 people for Christmas.
It was a very thankful time for my family.
We haven’t been without some fender-benders: In January
I got a cold, which took about 10 days to go away with
the aid of some antibiotics. But in March, I got the
dreaded Bronchitis that everyone else had. My doctor
wanted me in the hospital, but there were no beds!!
So I had to convalesce at home, keeping in touch with
my doctors by phone. This time we needed two antibiotics.
But after six weeks, the bronchitis was gone.
I have been going to pulmonary rehab twice a week. This
consists of treadmill, cross trainer and arm machine. My
reason for being there is to rebuild strength and endurance.
And, with the advent of summer, I pulled out my kayak and got
on the water! It is much easier to paddle this year than it
was last year before the transplant!! When the weather cools
down, we’ll be out again!
I have been doing a lot of gardening, and practicing yoga.
I am not very far along on the yoga, but I keep working at it.
My skin has returned to normal for the most part. and I can
feel my fingers all the way to the tips. Just the very tops
need to come back. I started quilting again and I am not
sewing my fingers to the fabric any more.The Hypertension
is gone.As for the Raynauds, I have not had to wear my gloves
once this summer, not like last year, when I wore them
all the time!
One of the most striking differences is that we have
halved the dose of Tracleer. As a matter of fact, in April
I had an echocardiagram, and it was not possible to measure
any Pulmonary Hypertension at all. I am hoping when I see
Dr. Traynor, who performed the transplant next week that
she will lower the dose for me and taper off. I am going
to try weaning off as much medication as I can. Time will
tell if I can be without it.
Several people have spoken to me and have decided to consider
a stem cell transplant. Things have moved in several
directions in the last six months, and the good news is
that there is a hospital in Newark NJ, Beth Israel, which
will do what I would call “pre-transplant” procedures.
There are about four others who are willing to begin
stem cell transplants in the very near future. Maybe by
this time next year, they will be doing actual transplants.
Transplants can be obtained all over the country, you just
have to find the right one for you.
Fund raising for the transplant has taken a different turn.
There has been a formation of a state fund in each state
called the State Bone Marrow and Cord Blood and Stem Cell
Transplant Fund. Any monies which are raised for you through
companies like National Foundation for Transplants, would
be deposited into this fund, earmarked for you.NFT’s website at: www.transplants.org
There are talks with insurance companies about the benefits
of insuring these transplants. It will happen in time.
This is a situation where we have to have faith. In the
meantime,do not let something which seems so daunting
stop you. There are solutions to this.
The first draft of my book on my experiences has been
completed. A selection will appear under “Wrinkles” shortly.
I can just imagine the number of rewrites it will need! Well,
that is probably why I’m a musician, and not a writer!
Speaking of music, I started singing again in April, just
in time for Easter. My singing is getting stronger. I have
about 5 adult students who take voice lessons from me. I am
enjoying it very much and it is helping to keep my own
singing skills sharpened.
I am going to music direct a gala in October for my old
drama group, and I will direct a production of “Ahmal and
the Night Visitors,” by Menotti to be performed in
January, 2007 for my church. I am becoming more active,
as you can see.
Otherwise, I am advocating for stem cell transplants
to anyone who is interested. At this writing, there
are 160 diseases for which there are trials, and of those,
42 are approved by the FDA. Things are moving faster and
faster. Several of my doctors who were not so sure about
stem cell transplant prior to my transplant, have come
around to the idea that this is a viable treatment. It
is hard to ignore the improvement when pulmonary function
tests continue to climb, which is something doctors normally
do not see.
I guess we can say I have returned to normal about 75%.
I can go up one flight of stairs at normal speed. I can’t
dig a hole or run up a hill. But, at 59, I probably wouldn’t
be doing those things anyway. Each day I wake up to a new
beautiful day, and I am determined to keep a smile on my face.
After all, it’s the first day of the rest of my life.
Jane
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