One Year Update

Home

My Story

Stem Cell Transplant

One Year Update

View Point

Advocacy

Clinical Trials

NJSCREF.org

List of Treatable Diseases

Current News

Guest Columnist

Funding

Readings

Transplant Survivors
Wrinkles Health Monitoring Equipment
          


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