A Life Of Diabetes: Part 2

This entry was posted in d-Tales, Inspiration, Patient stories and tagged , , , . Bookmark the permalink.

In today’s post, Lynn Wickwire, Joslin’s Patient Advocate, continues his discussion with Speaking of Diabetes about the changes he’s seen in his nearly 72 years with diabetes, and the role he plays in patient advocacy.

On Changing Methods of Management

Lynn Wickwire_2People are able with new technologies and new treatments to live totally healthy lives, if you take care of yourself. But tight control is the equation. In spades, it’s tight control.

And with the continuous glucose monitor (CGM), it’s a major game changer. More important than the insulin pump.

I have hypoglycemic unawareness, [which means I] can’t tell when I’m going south. Before I went on the CGM which is probably 15 or 20 years ago, once every couple of months [my wife would have to] give me glucagon. Did it once in the south of France in a tiny, tiny little village. I don’t know how far away a doc was, wouldn’t matter. I woke up in the morning and the sheets were sopping wet from just sweating and being totally unconscious. And so she gave me the glucagon, and we were fine.

But I came to Gordon Weir, M.D., Co-Head of Section on Islet Cell and Regenerative Biology at Joslin Diabetes Center, who was my doc, Gordon is a friend and a great guy, I said we have to do something because this is dangerous, you know driving. Even now you hear stories of crashes and they say “an incident” and I just kind of cringe and think ‘oh no, I hope it’s not what I think it might be…’

Anyway, Gordon put me on a CGM and my wife has not had to give me glucagon once since then. Except there was one incident right after the most recent Superbowl because [of an unfortunate incident with a stomach virus] where I had given insulin and then got sick and could not keep anything down.

My A1c is consistently in the low to mid 5s, all the time. And it’s from the CGM.

On Missing Pizza

Pizza! Oh man! That would be so awesome! Holy cow. I was in Howard Wolpert’s, M.D., Director, Pump and Diabetes Technology Program at Joslin Diabetes Center, pizza study and now know how to handle it but still it’s a bear to handle.

On Advocacy Work with Joslin

I’m essentially doing government relations and patient advocacy work, I follow the work of the Massachusetts Health Policy Commission. The Affordable Care Act is changing the landscape as to how health care is provided. [But I still believe that] Joslin has the best care. A patient ought to be able to go to Joslin and have better outcomes. That’s a no brainer to me.

I also Co-Chair the Patient Family Advisory Council [at Joslin]. Patient-centered care is an integral part of the Affordable Care Act. We, working with senior management, are figuring out what is patient-centered care? How are patients involved in determining the best care that can be provided?

I’m also part of a group that State Senator Jason Lewis started on sugar-sweetened beverage working group.

So those are a few things I do. I work part time, and go to different meetings and will recommend legislation Joslin should endorse..

On Hope for the Future of Diabetes Treatment

I think there is a chance for a real cure, in the next  10 to 15 years. This is an incredibly exciting time with areas like cell-based therapies – very big deal stuff.

It is not going benefit me, with all the complications I have now, I’ve got a lot of the complications: kidneys, heart bypass, leg bypass, eyes (I am getting shots so the eyes are stabilized). I can’t do much better, you know? I’ve done everything I can and it’s genetics that’s given me these issues. What are you going to do? But I believe with current technology and treatments, everybody can live a healthy, vital life with no restrictions.

2 Responses to A Life Of Diabetes: Part 2

  1. I have been trying to get on a pancrea/kidney transplant list. Due to diabetes while being an alcoholic and getting pregnant, all at the same time. I am in recovery today from alcohol, but the damage is done. Retinopathy, diabetic kidney disease, neuropathy, heart disease, skin problems (cancer), women problems, thyroid problems (hyperthyroid), and fibromyalgia. I am doing the best I can. But I am tired!! Seems like I am taking care of myself, with doctors appt., but I also feel I am doing medical assistant work. I don’t feel like I am getting the care I need or the help getting threw the red tape.

  2. I have been trying to get on a pancreas/kidney transplant list. I have all the complications you have listed and then some. I am trying to stay positive but have hit many road blocks with medical personel in doctors offices and hospitals, and even at the transplant center. I need and have asked for help, many times. I would love to go to Joslin Clinic but my insurance, not my needs, prevent me from doing just that. What would you advise? What should I be doing, now?

Leave a Reply

Your email address will not be published. Required fields are marked *