Never did I imagine at 28 years old – that the word “PLATELET” would become so important to me. My story with ITP began on Tuesday, January 8th, 2002 – a day I will never forget.
On January 7th, 2002, I noticed some rather large black & blues on my body and I didn't recall bumping into anything. I also noticed what appeared to be some sort of rash on my lower legs. However, I didn’t worry too much about it -- other than thinking that maybe I needed more Iron or some other kind of vitamin in my diet (I thought maybe I was anemic).
Well, the next day at work - I was still a bit annoyed about all the bruises I had because I had a vacation coming up (think bathing suits!), so I went on WebMD and searched under "bruises and rash." Needless to say - I found a lot of scary things (Leukemia, Lupus, ITP, etc.) and made a doctor’s appointment for later that day.
My usual doctor. was on vacation – so, I met with one of his colleagues and brought my printed documents from WebMD - ITP documents included. At first, the doctor. said “it’s nothing” and sort of brushed my claims off saying that young woman always bruise themselves without knowing it (yes, annoying, I know!). I showed him my leg “rash” and he said it looked like a “shaving rash” (uh… hello???). However, I persisted with my concerns, he agreed to run a blood test. A few minutes later, he came back with a horrified look on his face and said he was shocked to see that I had only 6,000 platelets in my body! He reviewed my chart and my most recent blood test (from Aug 2001) which showed I had 168,000 platelets.
The doctor was then quite nervous and told me that I had to “IMMEDIATELY” see a local hematologist, who he called and told I was on the way. At this point I was, of course, freaking out crying and stopped at my parents’ house. My dad tried to calm me down and came with me to the hematolgoist. She and her partner were wonderful and also tried to calm me down. I was there for about 5 hours while they ran another blood test (they too were shocked it was so low) and asked me tons of questions. They also did a bone marrow biopsy. Needless to say, that hurt a lot and I was really scared at this point realizing the danger I was in. I was then rushed to the hospital where I stayed for about a week. I was told to go straight there for fear that an accident of any kind could be fatal (bleeding to death).
Once at the hospital, they took about 15 blood tests and I was given a chest X-ray, sonogram, and CAT scan. Thank God that as the days passed, those tests all came back “normal”. I was then officially diagnosed with ITP. I was started on Prednisone (60 mgs) and then a few days later was given IVIG for two days (which took 10 hours a pop via IV!). The first day, I jumped up to 42,000 platelets and by day two, I had 81,000 platelets and was happily released from the hospital. My family and I thought that this crazy ordeal was now over – but that was not the case.
Two days later, I went back to my hematologist's office and was told I now had only 5,000 platelets. They crashed very quickly! I was given three more days of IVIG (which I didn’t respond to at all this time) and the doctors boosted me up to 80 mgs of Prednisone (which really began to hurt my joints - especially my hips and knees). They also tried a drug called WINRO – which did nothing for me either. I wasn’t hospitalized because I promised to just stay at home in bed (and I went on short term disability from work). When I got my monthly period it was so heavy that I got very lightheaded from losing too much blood. So, they had to stop it with Provera pills.
Things got even worse later that weekend. I went to church on Sunday and fainted in the middle of Mass. I almost crashed my head into the pew, which could have sent me straight to Heaven. But, thankfully my boyfriend (now husband!) caught me in time. At this point I was totally scared and thought I had just suffered a cranial hemorrhage (a risk with ITP) since I had never fainted before. I had been told since day one that having under 10,000 platelets puts a person at a high-risk for head bleeds.
My family then rushed me to the emergency room, where I was told that I had only 1,000 platelets!!! Also, my potassium was very low which caused me to faint. I was now getting terrible symptoms from the ITP – bleeding gums/nose and mouth sores. My body couldn’t take having so few platelets (what a difference even a few thousand less platelets makes!). The docytors did another CAT scan and it was normal. Luckily, I had no head bleeding, which was my biggest concern at the time!
I was then re-admitted to the hospital. In fact, I had sent a nice thank-you card to the nurses there -- and I was sent back before they even received my card! This time, I was in the hospital for about a month. Thank God my boyfriend, friends, volunteers, strangers and family visited me all the time! The doctors tried to figure out what to do with me next. I still wasn't responding to the Prednisone and the IVIG wasn’t working anymore (they tried it a third time -– two daily doses, but again - no elevation at all). For the whole month my platelet count ranged between 1,000 and 5,000. Overall, physically, I felt fine, but I was getting depressed, feeling hopeless and I was stressed. I wanted my fun life back!
My family, friends and I were determined to research/read/and talk to everyone (esp. – doctors) about ITP to find some sort of help. It seemed that no one really knew that much about ITP – which scared me even more. At this point, I was so ready to go under the knife and get my spleen taken out – which seemed to a better route than the chemo (esp scary since I wanted to have kids one day) or other “experimental” drugs they were discussing as potential next “options.”
I then came across some information on the Internet about a possible ITP/H-Pylori connection. H-pylori is a stomach infection (Google it for more background). A few weeks before getting the bruises/rash, I had terrible stomach pains/cramps (it was right after I had some mini hotdog/pizza rolls as appetizers at a happy hour). So, I asked my hemo to test me for H-pylori. She agreed and did a blood test for it. A few days later, she very happily announced it was positive -– maybe we were onto something!!! I then also took an H-pylori breath test, which turned up negative. But, I was told that some of the stomach-protection medicine that I was taking may have messed-up those results, showing a false negative.
My hematologist and the consulting infectious disease doctor decided to treat me for the H-Pylori (especially after the doctors saw the January 2002 cover story of HemoOncolgy Times. Its “breaking news” section was on a possible ITP/ H-Pylori connection. We all felt that this had to be some sort of a “sign” -- and it was my first glimmer of hope in a while!!! So, I began taking the very strong, two-week antibiotics mixture (Amoxicillin, Biaxon, and Previcid).
(NOTE: Many new studies on ITP/H-pylori have been conducted. Studies, esp those in Japan and Italy show promising results. Also, newer articles on the connection can be found via Google. Here’s one in Infectious Disease News -- http://www.infectiousdiseasenews.com/article/37318.aspx.)
One week into the H-pylori eradication treatment, we began to lose hope. There was no elevation seen in my platelets. And, I was now enduring very bad stomach pain from my mega medications! I was so disappointed and began to give up hope and began hating the world. My doctors were all frustrated too.
I was now ready to give in to the spleenectomy and began meeting with the surgeons. I was very nervous about getting through an operation with only 2,000 – 5,000 platelets. Especially since they tried a platelet transfusion on me with my father’s platelets and I went LOWER after it -- from 5,000 to 3,000 platelets! I was afraid that I’d die during or after the operation from unstoppable bleeding. I was so scared and almost stated writing “goodbye” letters to my family.
But, I was ready to do anything to get my regular life back. I was going nuts after more than a month of being stuck in the hospital, being pricked every day for daily blood tests and numerous other tests, and all the mental stress! Suddenly, it was ME wanting to get my spleen taken out and my hematologist “firmly” stating it was not yet time to try that since it was a serious operation. “Patience” was her mantra for me.
I remember my hemo sitting in my hospital room. I had tears streaming down my face as crying was no longer strange for the once happy me. She told me that she had spoken with another doctor. from Johns Hopkins (who was one of the 20 doctors my father called around the U.S. for advice during this saga). That doctor was kind enough to not only speak with my father, but he also followed my father’s request of speaking with my hematolgoist about his recommendations. He suggested we try the IVIG one more time -– this time for 5 days straight – to see if it would work with the antibiotics.
At first, I was not game for this, because of the three prior failed attempts with IVIG. I HATED the 10 hour IV connection time and terrible headaches it caused me, etc. But my hematologist persuaded me to try it again. She said “there was something in that doctor's voice” – “very professional and mature” - that made her feel it was very important for us to try the IVIG again, especially after now taking the H-Pylori treatment to see if it now allowed the IVIG to work properly and boost me up.
To our SURPRISE, the IVIG worked this time!!!!!! It boosted my platelets up a lot each day. I started the 4th round of IVIG when I had only 5,000 platelets. Day 1 – I was at 21,000, Day 2 – I was at 39,000, Day 3 – I was at 81,000, Day 4 - I was at 111,000 and Day 5 – I was at 149,000!!!!
I was finally able to be released again from the hospital -- after almost a month of being stuck there ready to die. I never knew my parents, friends, and I were capable of producing so many tears! However, even though the hospital was releasing me -- I was still terrified that I would crash back down to 5,000 platelets again like the time that I was released before.
Two days later, I went to my hemo’s office (it was Ash Wednesday). And, they were thrilled to tell me that I had 217,000 platelets!!!! My hemo, her partner, my parents and I all burst into tears of joy! (That’s what good doctors do – they feel your pain, they cry with you and laugh with you). I then went straight to church to thank God for his miracle of healing me!
A few months after leaving the hospital, I was weaned off that terrible Prednisone - which NEVER seemed to work for me anyway (my highest dose was 80mg). Thank God that my platelets stayed up when I tapered off the medication!
That Prednisone made me gain about 18 pounds within just a few weeks - which I wasn't happy about, but later lost it. I hope that the H-Pylori did have something to do with my ITP, so that it will stay away. I had also started birth control pills a few months before getting ITP – so they made me stop taking them after I got the ITP.
Early 2002, was a crazy few months for my family and me, but I was/am lucky to have had a fantastic, loving and dedicated team of doctors. They took the extra time to completely listen my thoughts/answer my questions and they appreciated the fact that my loved ones and I researched everything possible and encouraged me share it with them all.
My family and I spoke with doctors all over the U.S. I firmly believe a miracle lead me back to health so quickly! But, without the information found on H-Pylori – I might not have a spleen today and I might not have gotten better! It was amazing that I even went to the doctor in the first place because I was so busy. It’s a good thing because I was set to play volleyball the next day, which could have been a close call! It was a miracle that I found the breaking news story on H-Pylori right when I was about to get my spleen operation and also that of all places --- I fainted in church --- talk about signs from above...
Some people disbelieve the H-Pylori/ITP connection, but my story seems to prove it’s worth exploring further at the very least! If I can help one person with my story, it's worth it to me to keep discussing it! I had ITP for less than 2 months and it was complete Hell for me and my family and friends. I will never forget what I’ve been though -– looking in your loved ones eyes and wondering if you are going to be alive to see them the next day was the most frightening feeling in the world.
Well, it's now been more than seven years since my saga with ITP and I've been staying at about 200,000 platelets (med-free) and continue to pray that they stay in the normal range.
Even seven years later, I still constantly wonder if this will happen to me again. Every little bruise I get sets off a five-alarm fire for me. However, I consider myself extremely lucky when I read about other peoples’ heartaches! I am also completely grateful to all those who helped me through this rough time. Especially, my family, friends and my boyfriend at the time -- who has since become my husband! We are blessed with two gorgeous little ones. I also had a prayer group visit me in the hospital and they were amazing! I truly believe God heard all of the prayers being said for me! Its amazing how many people heard my story (that didn’t even know me personally!) and sent flowers, cards and thoughtful gifts. It really shows that despite all the terrible crimes and things heard on the news and read in the papers, there are still a lot of good things happening in this world!
I hope reading my story helps in some way. Please let me know if you have any questions about my battle with ITP. God bless you and I wish everyone many platelets!
-- Christina914@hotmail.com (put ITP in the subject line).