Caroline's ITP Story

Caroline Burkat Hall knows first hand what it is like to deal with pain every day.

Along with ITP, she has other medical issues that will never go away. But that does not stop her...

My name is Caroline. I live in CT. My ITP has been long-term (almost 32 years) but in those 32 years, I've had far less issues than most people. I guess I would be considered to have a mild case, and I'm happy to.

I found out I had ITP when I arrived at the hospital in labor on Sept. 14, 1980. Since I was scheduled for a c-section (although this was not my scheduled date), blood was drawn. The OB GYN who happened to be on that Sunday was the high-risk doctor in the practice. His first thought was that the hospital lab had made a mistake with the count so tests were done again and again, each time lower than the previous ones. I got platelets through the Red Cross and proceeded to have my oldest son who arrived safely.

I continued to have a low count but didn't need treatment. I went on to have 2 more sons in 1984 and 1986 without a problem, having a course of Prednisone, basically the only treatment then (besides splenectomy), at the end of each pregnancy (even though son #3 arrived 4 weeks early). My counts for the next 18 years were done yearly at my OB GYN annual visits and averaged in the 70-80,000 range. I never had a treatment, I kept my spleen.

In 2004, on my 50th birthday, I discovered I had a target rash on my back and headed to my regular doctor for a Lyme Disease test, which was negative but my platelets were quite low so she sent me to a hematologist she had consulted with. By the time I saw him, maybe a week later, my count was back to where it usually is. I continued to see the hematologist regularly, no problems. I managed, between 2003 and 2007, to have 3 knee arthroscopies, no treatment needed beforehand. In 2008, I had one more arthroscopy and my right knee partially replaced. Still no treatments! In 2010, I had my left knee totally replaced, still no treatment.

In March, 2011, I arrived at the hospital to have my partial knee replacement switched to a total knee and my count was lower than expected, so the choice of anesthesia was changed from spinal to general and I received platelets during the surgery. The following day my count was lower (in the 40s from the 69 it had been on surgery day, which was lower than the 104,000 it was a week before for my pre-op) so my hematologist was consulted. He put me on a short course of Prednisone which brought up the count. 12 days later, I was completely off of it. My counts were higher for a couple of months, but now they're back to the 80,000 range where they usually are.

That course of Prednisone was the 1st treatment I had since 1986, and that one had only been done because I was pregnant. So I still have ITP. It's there. It affects my other medical choices, like choices of medicines. Having bad arthritis is not something easy when you have ITP, but I've managed. My hematologist allows me an Nsaid, as it's a quality of life issue for me.

In October and December, 2011, I had 2 more surgeries, a foot surgery to stop a lingering case of plantar fasciitis and a knee arthroscopy to get out scar tissue around the knee that was replaced in 2010. Both of these issues caused long term pain-in addition to the pain of getting over the March 2011 revision of my knee. I had a lot of pain issues, basically, for about 2 years. Probably as a result of this, I was diagnosed with fibromyalgia in February, 2012. “Lucky” for me that I don’t have most of the issues associated with this disease, but I do have the pain issues, and again ITP has to be considered when dealing with pain medication. Since it is something that manifests itself as pain, it is yet another thing that I have to figure out how to treat without affecting my ITP. So it leaves me with more limited choices for pain relief.

In general, all the pain issues I have -the arthritis I have in my hips, shoulders, back, and what is left in my knees-yes even though a TKR removes your natural knee, there is always a little bit of arthritis left behind there)  and fibromyalgia have affected me a lot more than my ITP, although the ITP is much more medically complicated and difficult.