ITP Warrior - Barbara

My life changed on May 1, 2004 at the age of 60. Before that, I had a fairly normal life – I had been married to my husband Jim for over 40 years, raised two children, worked full time and exercised four days a week. On the morning of May 1, I woke up with red spots all over my arms and legs. I was recovering from pneumonia and on antibiotics. My first thought was that I was having a reaction to the drug, so I called my internist who got me in his office that afternoon. After discussing what was happening, he did a stat blood test and left me in the examining room to check on the results.

A short time later, I heard him outside the door say, “Oh my God.” But he didn’t come right in, so I thought his remark had nothing to do with me. Not so. He had gone down the hall to check with a hematologist in the building. When he came back, he explained what platelets are, got my husband from the waiting room, and sent me down the hall where the hematologist was waiting to do a bone marrow extraction and start an IV. He called ahead to the hospital and sent me on my way.

That was the start of a [18]-year journey which has included about 12 hospitalizations due to a platelet count under 7,000.

While I was in the hospital, in the oncology unit, that first night, my husband was at home looking online for information about platelets. Thank heavens for the Platelet Disorder Support Association, which is where he found that first bit of knowledge about bleeding disorders. The hematologist had visited me and indicated she thought I had something with initials I didn’t understand. I thought she used letters that stood for “to be discussed later” and she would be back. She provided very little information, but my internist gave me more information later. That started my relationship with PDSA, and we attended our first ITP Conference about a year later.

My ITP is a little different than some patients. I can be in the normal range for 6 to 12 months or more, and then get petechiae and I know that means my platelets have dropped to under 7,000 and I need to go to the emergency room. During these drops, I have so far responded well to IVIG infusions, steroids, and now Promacta®, returning to normal counts in about a week.

After many years of steroids, I chose not to take them anymore, if possible, because of extreme side effects. I also chose to not remove my spleen. “No” is our favorite word and leads to a good conversation with doctors about treatment options. My issue now with Promacta® is that my platelets go too high – 900,000 – and that leads to new problems. Working to stabilize the count can take a few months and has become a roller coaster experience.

Over these [18] years I have hired and fired a few hematologists until I found a bleeding clinic at Northwestern Memorial Hospital in Chicago. I now have someone who listens, responds quickly, and cares about my disease.

I have learned several things that are important for my ability to cope with my roller coaster disease of ITP.

  • Like your doctor and make sure they care about your feelings and what’s happening to you. They also should have experience with multiple ITP patients even though ITP is different for each person. It’s my disease.
  • Keep a history of your ITP. It’s important to have in case of an emergency or if you change hematologists. You won’t remember important details.
  • I have a patient advocate. It’s my husband but it could be anyone close to you. He keeps and updates my medical history and is with me during most doctor visits and hospital stays. He asks questions I’ve forgotten. It’s always good to have a second pair of eyes and ears.
  • Stay calm! Walking outdoors, exercise, meditation, Reiki, art projects have all helped me. I also treat myself by buying fresh flowers or a fancy coffee or tea whenever I need a pick me up.
  • Make contact with other people with ITP. PDSA plays an important part in making that possible. Through a PDSA conference my husband and I organized a local support group. We meet about four times a year and can talk more often if needed. The Platelet Disorder Support Association is invaluable for current and accurate information.

My life has changed over the past [18] years for the better, even with many visits to emergency rooms and the ups and downs of ITP. My husband’s analogy it that it’s like having children: after you have a few children, you know what to do when the next one comes along without a panic attack. The same is true of getting ready to go to the hospital because of ITP. We do the normal things – take a shower, eat, pack, call the kids, and [then] get down to the hospital.

 

 

 

 

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