4 posts tagged “blogger”

Battling the Complications: An Interview with Diabetes Patient Michael Burke (Part II)

Posted November 9th, 2011 by

Last week, in Part I of this interview, PatientsLikeMe member and blogger Michael Burke shared his sister Linda’s struggle with type 1 diabetes.  Today, we learn about his own type 1 diabetes journey, including his June 2011 kidney transplant as a result of diabetes-induced kidney failure.

1.  What diabetes complications have you faced?

PatientsLikeMe Member and Diabetes Blogger Michael Burke

Diabetes is a disease that appears to be misunderstood by most people, in that the consequences of the disease can lead to many different complications.  As I mentioned earlier, both Linda and I suffered from diabetic retinopathy…essentially, you can go blind from diabetes.  Another complication is nephropathy, or kidney disease.  For me, this led to kidney failure and the eventual need for a kidney transplant this past June.

Heart disease is another major complication.  Personally, I never knew that I had any heart disease until one day my primary care physician sent me for a routine stress test.  During the stress test, the cardiologist felt it necessary to immediately admit me to the hospital and do a cardiac catheterization the next morning.  When he did, he found two blockages in my right coronary artery – one was a 90% blockage and the other was an 85% blockage.  I then had several stents placed.  After two years, those stents were becoming ineffective, and I required heart bypass surgery.  Lucky for me, there was a heart surgeon in Boston who was doing bypass surgery robotically.  What this meant for me was a much smaller incision (about an inch and a half compared to the whole chest being opened up), and being a diabetic, less risk of infection and a shorter recovery time.

Another complication is [diabetic] neuropathy, or nerve damage.  Typically, this usually affects the feet, but other parts of the body can be affected as well.  As for Linda and I, the neuropathy is/was primarily in our feet.  For Linda, it was extremely painful, with the feeling that you are constantly being poked in your feet with something very sharp.  For me, the feeling has been quite different, in that there is no feeling, at least around my big toes, which in turn has caused some balance issues for me.  Neuropathy is serious, it’s not just that it is painful for some and a loss of feeling for others.  It can also lead to amputation of your toes, your foot, or in drastic circumstances, part of or all of your leg.

2.  What was your kidney transplant experience like, and how are you doing now?

I went through a whole lot of emotions over the course of getting this new lease on life.  Although I had been prepared by my kidney doctor over the last several years that I was most likely going to need a kidney transplant, the day I sat with the transplant team for the first time was absolutely frightening and surreal at the same time.  It’s hard to explain.

I just remember sitting with the transplant team and when the transplant doctor said, “Ok, we will put you on the transplant list within the next few days, and we will move forward,” my heart was pounding so hard I thought it was going pop out of my chest.  There is also a lot of anxiety that goes along with the whole transplant process.  At first, I didn’t know where the kidney would come from.  I knew there were family members who said that they wanted to be tested and now I was also on the national transplant list.

Michael Burke's Brother and Kidney Donor Tommy

When my brother Tommy was starting the testing process, I kept going back and forth in my head.  It would be great to have someone close to me donate, but then there was the guilt.  If I ever rejected their kidney now they are left with just one.  As it turned out, Tommy was a 5 out of 6 antigen match, and he donated his kidney to me in June.

I had often heard before the transplant that you won’t understand how badly you felt or how sick you were before the surgery until after the surgery.  That could not be a truer statement.  I never really felt sick before, and I have been told that is because kidney disease can be very slow and progressive.  However, looking back today, I can honestly say that there has been a 180 degree turnaround.  I have much more energy and I just generally feel well – it has been a huge difference, and I have Tommy to thank for that.

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Are you a diabetes patient as well?  In honor of American Diabetes Month, share your thoughts and stories at CallingAllTypes.com.


Spolighted Blogger: Mollee Sullivan of My Broken Stomach

Posted August 8th, 2011 by

Blogger Mollee Sullivan of My Broken Stomach, a Blog about Gastroparesis

Recently, it came to our attention that one of our members has an outstanding blog called My Broken Stomach, in which she chronicles her experiences with gastroparesis.

We reached out to hear to learn a little more about her as well as how she’s managing her condition, which causes partial paralysis of the stomach. (As a result, food stays in the stomach longer than normal, and patients may experience symptoms ranging from premature fullness to nausea to unplanned weight loss.)

What advice does this popular blogger have for digital age patients? And how has PatientsLikeMe and the experiences of other patients helped her?Check out our interview with Mollee Sullivan below.

1. Where are you in your gastroparesis journey? What’s gotten you there?

It’s been just over a year since my diagnosis, and I feel like I’ve finally reached the point where I can say I’m managing my gastroparesis well. I know I still have a lot to learn, and I still have bad days, but I have many more good ones. There have been a lot of factors involved in getting me here: sticking to my low-fat, low-fiber diet; taking probiotics daily; exercising regularly; reducing stress; getting enough sleep; building a strong support system; and maintaining a positive attitude.

2. What have you gained from being a member of PatientsLikeMe?

I’ve gained access to a community of other individuals who have gastroparesis, and I have another tool for logging my symptoms, weight and treatments. It’s also interesting to see what clinical trials are going on for gastroparesis. I think PatientsLikeMe will become even more beneficial over time as more and more people join.

3. What’s the most important thing you learned from another patient with gastroparesis?

That it’s possible — and actually beneficial — to exercise when you have gastroparesis. At first, I was afraid I’d lose more weight or push my body too hard if I went running, but after talking with a woman who has gastroparesis and finished a marathon, I was inspired to get my running shoes back on. I completed a 10K this past spring and was able to maintain my weight; plus, I felt a lot better on the days when I went running. I’ve kept up a regular exercise program since then, and I plan to participate in the 10K every year.

4. What are your tips for living in the age of Health 2.0?

Get involved! There’s no reason to feel alone with gastroparesis or any other health problem these days with all the blogs and online support groups where patients can connect. Unfortunately though, some forums seem to be overrun with whiners, so use positive, reliable sites (like PatientsLikeMe) and find people on them who are encouraging. And while it can be helpful to read about what others are doing to manage their illnesses, ultimately you have to do what’s best for you.

Finally, don’t try to diagnose yourself on the Internet — every time I did that, it told me I was either pregnant or dying. (I’m neither.)