Friday, April 2, 2010

Islet Cell Transplant Recipients is a new page on Facebook

I recently found another islet cell recipient online and he has created a facebook page where we can all share our experiences with this.  It was such a good idea!  Its so hard for us to find each other because of the constraints of HIPAA.  I appreciate the few recipients that I have been able to locate.  Its so nice to be able to share our joy of the experience in general and to compare some of our symptoms of the side effects of the medications we are all on.  I hope that it really takes off.

I am completely done with the immunosuppressive drug Cellcept.  I just had my levels for Rapamune and Prograf checked and both were within range.  Maybe I can be on coast for awhile with these drugs.

My mouth sores (caused by the Rapamune) are gone now and I haven't got any new ones.  They were no fun.

Cassie is in California now.  After a few going away parties and agonizing over which clothes to take, she is safely there.  We already miss her a lot.  She and Gary are hoping to get together soon.  That part, I like.

I have watched a few people who were hoping to get islet cell transplants have their hopes dashed.  The most recent one was due to a high PRA which is a test of the amount of antibodies you have in general.  The higher the PRA, the more likely you would be to reject the transplant.  Its something you have no control over, which makes it seem even more unfair.  My heart goes out to these people.  The only silver lining might be that with all of the advances that are occurring now in diabetes research, these people might get a newer treatment that does not require drugs or might have other benefits compared to the current technology.  I wish them the best.

Its Easter weekend, the weather is great, and I am off.  Gary and I are planning a scenic walk this afternoon.

The pictures are of some spring flowers, my pig at work that was decorated for Easter by my creative coworker and myself, and the last one is of pig islet cells from the Living Cell Technologies site.


bobdob said...

Hi Cathy .my name is Bob Inglis from halifax nova scotia canada
Am Im waiting for the call to go to edmonton for the the transplant Ive been diabetic for 24 yrs, so Im hoping to have a lot of success as you and so many have ,its great to hear you are so well ,with some difficulties which being diabetic so long I know your tough as nails , my email is keep well , BOB

et63 said...

Thanks for your continued hope Kathy. I am thrilled things continue to go well for you and I do hope the road continues smooth. Those mouth sores were the one thing I was not thrilled about having to endure, but would have with everything I had.

I will continue to follow you and your progress as I try to find other methods to come out of my current status. The lows have become frustrating at best, for both me and my daughter, who often is the one who has to rescue me. I am just now starting to come out of the "slump" of all that has transpired in the past month. I took it very hard having been all pumped up with the positive feed back of everything else coming back a go, I figured, the PRA would have been one of those "1st things checked" sort of test. Learn something new everyday.

I am trying to find stem cell therapies already in use on perhaps the Europeon front? If anyone has any sort of information that may help me out I would appreciate the reading material.

Again, continued best of luck to you!!! Stay healthy and keep on fighting !!


Anonymous said...

Hi Kathy,

I keep following your blog and I am so glad to hear how well you are doing. Diabetes type1 is not easy and although I don't have it, my son does. To be insulin free is a blessing! I as mom feel I have it too. I will continue to pray for you and your continued success and hope one day that my son will be insulin free too! I will continue to follow your progress.

Anonymous said...

Hello Kathy. My name is Amber and I'm 29 years old. I have been a diabetic for 24 almost 25 years. I was told a long time ago by my Dr. that the Islet Transplant was no longer available. After doing some research found out that it is. I have read your story and I am very happy for you. I live in SC. Can you email me on how to get on a transplant list or find a facility on how to begin the process. . Thank you so much. I look forward to hearing from you soon. God Bless!!!!!

Dave said...

Hia Kathy, please to read your doing fine after your cell transplant.
I have an appointment to discuss having the Cell opp. This is in Manchester uk.
I have read quite alot of info, on the various site, but your site, seems to be the most interesting, because, you have had the transplant.
I have been told by my Local Diabetic consultant, i fit the criteria, so heres hoping. I have been a Type one Diabetic for 29 yrs, and its the lack of warning, if Blood Sugar drops, why am hoping the cell opp, will work for me.

Hope all is well with yourself,
i,ll keep you updated with any progress, i have.

Anonymous said...

I'd like to join in please. I'm English and have had 2 Islet Cell tranplants, each with particular complications. They were don at the Uni of Chicago as at the time of the first one, they were not being funded in the Uk.
I'm happy to say that I've been insulin independent for 6months. It hasn't been easy, but so much better than collapsing 3-4 times a week with no warning. Feel free to emial me via this site. I can't always respond very quickly, (it may take me days!) but wil endeavour to asap.
It's changed my life. However long it lasts, i'm happy to let my body have a bit of a rest from the catastrophic consequences of hypo unawareness.

Loretta said...

Well, I can relate. Reality, but helpful. That's what you get from good dentists. Hattiesburg professional (actually, all of them are) healthy mouth advocates have campaign posters on their clinics, usually on the wall, telling us the importance of dealing with "small mouth issues". Rest, and just follow your dentist. Hattiesburg MS posters aren't joking. Mouth ulcer is annoying but through proper medication, it can be a "chicken-click" away!

island gal said...

My son Kelly had his transplant in Jan. & is having some complications the worst is very low white blood cell counts from his drugs. He is discouraged & ready to go off everything which could kill his islets. Has anyone else had this problem? He is getting conflicting advice from Vancouver transplant team where he lives & Edmonton transplant team where he had it done
Mom Duke

Unknown said...

I did have this complication. I had a treatment to help this and it worked. Tell him to try again to explain this to his transplant team. They want to see us have success as much as we do.

I see that you have found the facebook page as well. Try posting your question there and I'm guessing that someone will know who to steer you towards with your question.

Good luck with this. I hope he feels better soon.