Islet Cell Transplant Clinical Trial


(meme) #1

Hi Kathy,I didn't want to turn the other post-but I wanted to ask a question.How long have you been type1 ? I would like to read more about this.Did you say your blog is up ?  Thanks !


(KathyW) #2

Hi meme,

I have been a type 1 for 26 years.  Even though I don't need insulin anymore, I still consider myself a diabetic.  I still watch what I eat,  and test my blood sugar often.  My blog address is http://kathy-mynewislets.blogspot.com    I started it when I had my transplant and have continued it throughout.  It has been an amazing experience, and I enjoy sharing it.  Please feel free to ask any questions you might have.

Kathy


(golfpapabravo06) #3

hi kathy, how long do you have to take cellcept for? is that something you'll have to do for the rest of your life?


(KathyW) #4

Hi Greg,

I will take the Cellcept and Prograf for the life of the transplant, which I hope is very very long.  There are a few side effects of these drugs to contend with, but nothing too bad and nothing that even compares to having to deal with crazy blood sugars and the effects of insulin.  It really feels like a whole new life.

Kathy


(meme) #5

Thanks Kathy,How do you get picked for something like this ? How many people have you met doing this and how is it going for them ?


(KathyW) #6

I read about the clinical trials online and researched as many as I could.  I chose to apply to U. of Minnesota because of their experience and good track record.  It is a process of questions followed by testing to see if you are diabetic enough to make it worthwhile, but healthy enough to be able to tolerate the surgery and drugs.  It was a long, but very interesting and necessary process.

I have met about six other patients, three in person and three online.  They are all doing well too.  Because of HIPAA, it is hard to find people, but I try, and my blog makes it easier for people to find me.  It is so nice to find other recipients to compare experiences with.  I value all of the contacts that I have made with people who are interested in this.


(AuDAlly) #7

What are the qualifications for islet cell transplant candidacy?

Were there any draw-backs in retrospect?


(AuDAlly) #8

What are the qualifications for islet cell transplant candidacy?

Were there any draw-backs in retrospect?


(KathyW) #9

There are numerous inclusion and exclusion criteria.  They look at body/mass index,  A1c, kidney and liver function tests, blood sugar logs,  questions about hpoglycemia unawareness, and information from all of your doctors.  For a list of centers that are performing transplants and the inclusion/exclusion criteria for each, go to the Collaborative Islet Transplant Registry.  That also shows the latest report that has been issued by the Registry from the data sent by all of the centers.  It is a well designed and interesting site.

At this point in time, there are no drawbacks.  I have been lucky to have achieved insulin dependence with only one transplant.  The side effects of the immunosuppressants has been minimal and/or tolerable and are getting better with time.  Financially, we have been able to afford the cost of my trips to Minneapolis for my follow up visits, and my insurance company is paying for almost all of the cost of my drugs.

Of course, their are risks and I understand that.  I am immunosuppressed which could lead to illness or cancer or other things.  The risks are still minimal, but are increased.  I still think that these risks are less than where I was headed with widely swinging blood sugars for  so many years.  But only hindsight will be able to answer that question.  But however this turns out, I will never think that my decision to try this option was wrong.  It has been a gift of a new life for all of these months and hopefully many years to come.