Dinner With Kathy and Her New Islets

Life is all about spending time with great people, which is exactly what I did on Monday night.  Kathy White blogs at “my new islets” and writes about her experiences receiving an islet cell transplant at the University of Minnesota’s Schulze Diabetes Institute. Kathy hails from Ohio and she has been coming to Minneapolis periodically for the last 2.5 years to do testing related to the transplant and research study.

A while back I met a couple of great families involved with the local JDRF office (hi Camille, Geoff, & Debbie!), and they invited me to join them for dinner with Kathy while she was here this time.  How could I refuse?

Camille, Kathy, Debbie, Scott
Camille, Kathy, Debbie, Scott

We spent almost four hours chatting away.  I had so many questions for Kathy.  As soon as she would finish answering one questi0n, I was throwing another at her.  I must have hit her with 15-20 questions in the first few minutes.  Poor gal.  She handled it like a champ.  I had to apologize to Camile, Geoff, & Debbie for completely dominating the conversation – I don’t think they got a chance to talk for at least an hour.

I learned that Kathy’s experience has been almost all good.  She had a little trouble with one of the immunosuppressant regimens, which showed itself as some gastro issues, and has also written a little about mouth sores.  She’s on a different combination of medicines now, which are not causing her any physical issues.

The immunosuppression is scary to me, and many others I think, but she said compared to diabetes it is nothing.

It’s been about 30 months since her transplant.  She’s currently taking a small amount of insulin daily (I think she said three units of lantus per day, and a couple units of regular before breakfast and dinner (did I get that right Kathy?)).  It’s not clear whether that is because her islet cells are fading or if it is a result of the immunosuppression stress.  She said before this cocktail of meds she didn’t need any insulin at all.

What stuck with me was Kathy saying “I finally feel successful with it.”  So, yes, she’s back on insulin again, but it’s been 2.5 years since she’s had a low or high blood sugar.  It’s been 2.5 years since she’s had to worry about blood sugar while exercising.  It’s been 2.5 years since she’s had a night of sleep interrupted because of a high or low.  It’s been 2.5 years since she’s had to do any math before eating.

That sounds pretty nice to me…

There are, of course, a lot of unknowns at this point.  It’s not clear if her new islets will work forever, or if the immunosuppressants are hurting her body in other ways, or what the next few years hold for her (the research study ends in another 6 months).

Kathy seemed to have a certain peace about the uncertainty of the coming years.  She doesn’t know what is going to happen, but is clearly very thankful for the 2.5 years she’s had so far, and will be thankful and grateful for every new day her islets give her.

I am very thankful to have Kathy, and others like her, doing so much to help figure all of this stuff out.  She’s done us all a great service by simply participating in this research study.  She’ll tell you that she signed up to help herself, which is true too.  Sounds like a win/win to me.

Thank you Kathy, for all that you have done, and for sharing your evening with me.  I really enjoyed your company, and look forward to the big party when you come back in the summer.  Don’t forget to bring your kayaks!

Camille, Geoff, Debbie – thank you for inviting me to dinner with you all.  It was a real treat for me, and I enjoyed having some time to get to know you three better too.

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Scott K. Johnson

Patient voice, speaker, writer, advocate. Living life with diabetes and telling my story. Patient Success Manager, USA for mySugr (All opinions expressed are my own and do not necessarily represent the position of my employer).

Diagnosed in April of 1980, I recognize the incredible mental struggle of living with diabetes. Read more…