ITP Personal Stories

Short Stories

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If you have an interesting or unusual story, you can send it to us and we will consider posting it here. It should be 400 words or less. A link to your e-mail address is optional. When you write, be sure to indicate that you want your story published in the Short Story section.

It was a Virus

My experience with ITP was a short one, but scary enough to change my life. It started last year, when I was 21. I noticed large lumps in my neck and I subsequently was diagnosed with Mono or Epstein-Barr Virus. I figured this was normal enough for someone my age. Many people got this virus.

One day while at work, I noticed large bruises all over my legs. They had not been there that morning so I immediately knew something wasn’t right. After blood tests, it was determined my platelets were at 6,000. I was admitted to the hospital and began prednisone and IVIG. I left the hospital at 78,000 platelets and stayed on prednisone.

My platelets rose to 264K, but soon began dropping again. I was devastated. That’s when I started educating myself about this disorder and found this website. It helped immensely. I landed back in the hospital a second time when the platelets dipped too low again, and was given another IVIG. They rose again and fell again. Prednisone was doing NOTHING to my platelets, and was tearing my emotions and body to shreds. To this day, I think the experience with prednisone and its side effects were somewhat worse than the actual ITP. I was 21, and I wanted to be with my friends; instead I was wiped out from the prednisone and losing weight from the worry and stress of it all. All the blood tests, worrying and ruling out more serious disorders are not something you expect to have to go through at this young age. I was scared that this was going to be the rest of my life.

After my second IVIG, my hematologist tried WinRho, which I had success with. I received two doses of this, each time my platelets soaring to the high 200’s. I would remain high for about 5 days each time. Then on my last visit to the hematologist before going back to school, my platelets rose on their own for the first time. I cried, as I usually did at my hematologist's office, but this time it was because I was overjoyed. My platelets continued to rise after that, and haven’t dipped below normal platelet levels since.

The doctors have told me it was acute ITP due to the Mono. Even though it’s been a year since I’ve had low platelets, I’m still cautious. Bruises scare me, and every time I see petechiae, I wonder. I see my hematologist every six months just to be checked. So far so good. I’m grateful to be okay. I learned a hard lesson about letting an “illness” consume you. I don’t want ITP to come back, but if it does, I’ll be better prepared to deal with it. There was so much more that could have been wrong with me, and in the whole grand scheme of things, I was fortunate.

Looking back, ITP was a scary thing for me to deal with. I thought I’d have ITP forever. I hope my story will give hope to someone else. Be strong and optimistic.

-- Stephanie sduca@verizonmail.com

Will I be Normal Again?

My story began 3 years ago in March of 1999 when I was 33 years old. I had been feeling out of sorts for months but just put it off to a number of possibilities. One morning I started a severe nosebleed, which lasted 4 hours. I eventually slowed the bleeding down long enough to drive myself to the hospital, only to have my nose cauterized and then sent on my way. No blood tests were taken. I went through repeated visits to the hospital with no blood tests. Well, after four weeks of bloody noses, I woke up one morning to a terrifying sight: I opened my mouth and noticed blood blisters all over my tongue and inside my cheeks. My arms and legs had petechiae all over. I was scared to death. My doctor immediately sent me for blood tests and that’s when he saw that my platelet count had gone down to under 10,000. My red cells were very low as well. I was hospitalized and given a platelet and blood transfusion along with many treatments of IGG. I was in the hospital for 5 days and when I left I was put on 150mg of steroid. That was awful!

I ended up with a blood clot in my leg and my eye, for which I had to be hospitalized. I have had a splenectomy and my counts went up to over 300,000, only to come crashing down and be hospitalized with more IGG treatments. Now whenever I have a relapse, my hematologist brings my steroid dose up to 100mg and then slowly weans me down to 20mg over the course of a month or two, depending on how my counts are doing. I find that my platelet count seems to be strongly affected by stress. As of April 2002 my counts are at 242,000 and I’m only on 20mg of steroids. I take a mullet-vitamin, 1000mg of Vitamin C, Super B-Complex, Folic Acid, and Magnesium (for an arrhythmia I developed due to the steroids).

The hardest part of all this is not knowing if you can ever be normal again. The side effects from the steroids are extremely difficult and people don’t always understand. I’m living with an illness that has a lot of control, but with this website I feel that I've been given so much important information. I think I may be able to take my healing into my own hands and figure some of this out myself. It is a difficult illness. But the hardest part is the loneliness we feel. People tend to forget that although you act like you’re on top of the game, you are struggling every minute to get through the day. When this illness first presented itself to me I was in the process of changing jobs. So the past 3 years have been a challenge for me. But with more knowledge, if I can’t beat this illness, at least I can try and take control of it.

-- Sue smichaud@nmmc.org

Surviving Blood Clots

In 1996 while I was employed with the Drug Enforcement Administration (DEA) as a Supervisory Special Agent, assigned to La Paz, Bolivia, I was diagnosed with ITP at the University Hospital in Pittsburgh, PA. My platelet count was down to seven thousand. They tried antibiotics, danazol, prednisone and finally a splenectomy. Still my platelet count stayed down at a single digit count. While recuperating from my surgery, I developed a pulmonary embolism. After placing an Inferior Vena Cava (IVC) filter, I developed a life-threatening deep vein thrombosis (dvt) to the point that doctors recommended they amputate both of my legs. However, they decided to try one other treatment, which was to apply UROKRAYNIS through a catheter to my veins in my legs. I spent ten days in intensive care and three months at the Jackson Memorial Hospital in Miami, FL. I came very close to losing my life. However, I had God and ANGELS (Dr. Thomas Scagnelli, Dr. Ana Echenequi, Dr. Yeon Ahn, nursing staff and family members) who stood by me during the worst time of my life. I have since retired from the government and enjoy a healthy productive life and a platelet count of 350,000. I continuously stay in touch with my God and my doctors.

-- Eddie ELHernandez@directvla.com

One Day at a Time

I went to the doctor on March 15, 1997 for what I thought was bronchitis. While I was there I showed the doctor some strange bruising on my stomach and legs, and he asked to run a few tests. I was awakened the next morning by a phone call, telling me not to go to work but to come straight to the doctor’s office. As I entered the office I was given papers and told to go to the hospital immediately. My mother helped me to be admitted as I was in a state of panic.

After I was admitted, the news was broken to me that I had only 6,000 platelets. The hospital staff did a bone marrow test and the prednisone treatments began. After a few days in the hospital I was sent to Augusta, GA to see a specialist at a teaching hospital. The prednisone had no effect on my system, only some unnecessary weight gain. After a few weeks of treatment the specialists decided that a splenectomy was necessary to regulate my platelets. I had the surgery in May of 1997.

My husband went to work every day and drove five hours to see me in Augusta every night. My sisters-in-law Lucy and Maria took care of my 2-year-old and me. I developed a cyst behind my diaphragm, but it wasn’t caught in my 10-day stay in Augusta. Two days after my return home I was back in the hospital again with the cyst. After five weeks of recovery I returned to work. I worked for another five years after my ordeal with ITP. I no longer have much of an immune system so I take care of myself, make sure I don’t get run down, and I get a lot of rest.

Through my ITP I learned that we only get one chance. I live my life one day at a time, but every day to the fullest. Thanks to those family members that were by my side to help me through.

-- Mary samerson@surfsourth.com

Lessons Learned

I was working as a camp counselor over the Memorial Day 2000 weekend when a girl asked me, "What happened?" She pointed to the back of my leg. There was a huge dark purple bruise, about four inches wide. I honestly couldn't remember when I had bumped something big enough to make a bruise that size.

After many blood tests and doctors’ visits, I saw an oncologist. The doctor explained he thought I had one of three things: ITP, lupus or leukemia, with ITP being the most likely diagnosis. He ordered a bone marrow biopsy. The doctor called two days later. ITP he said. Definitely ITP. He said my platelet count was now 19,000, and I had to start on steroids immediately.

I went through many emotions after my official diagnosis. I was relieved it wasn't a more serious illness like leukemia. I was worried and scared, and didn't know what lay in store for me. During the next few months, even on prednisone, I was not getting better. School started up again and it was difficult to keep up with things the way I used to. I was tired constantly. I couldn't walk up stairs without wincing in pain. My body looked like someone repeatedly beat me up. By the second week of school I was skipping class because I couldn't get out of bed. One month into my junior year of college, I made the difficult decision to leave school for a semester so I could get better.

I switched doctors; the new doctor put me on WinRho once a month for six months. My first treatment was in December of 2000. I went back to school in January 2001. It was difficult and weird to be back. I slowly got better, and my platelet counts returned to better numbers, thought still not normal range.

I learned so many important lessons as a result of getting ITP. It made me grow up faster. I learned who my real friends were. I got closer to my mother and stepfather. I had a new appreciation for life and the world around me. I have dreams and goals and have a different approach to life. All because of a black and blue mark on my leg.

-- Michelle Mmephillyathome@aol.com

ITP and Mono

Hi, my name is Cat and I am 18 years old.

Just this week I went to the doctors for an extremely sore throat. The doctor brushed it off and said it was severe strep throat, shot me with penicilin and sent my on my way, telling me I'd be better in less than 48 hours. Well 48 hours later, I wasn't better...I was worse. Not to mention I had mysterious reddish purple spots all over my body (petechiae). I went to the ER because my throat was so inflamed I couldn't breathe properly. The doctor's in the ER did a culture and a blood test and I patiently waited. The doctor came in and said "This is where the plot thickens..." I knew something was wrong.

He said the blood test was positive for mono but it was the spots on my body that were a bigger deal. He said I had a low platelet count which was called ITP. It was almost surely caused by the mono. I was admitted to the hospital that night and given prednisone steroids and gamma gloublins through an IV. When I was admitted my platelet count was 3,000 and the next day it reached 4,000. Luckily, day 3 it was 24,000 and day four it reached a great 137,000 and I was released from the hospital. I go back for lab work in a few days and I hope for good news. I am luckily that my ITP was only caused by my mono and hopefully shouldn’t return again.

-- c__a__t@hotmail.com

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