ITP Personal Stories

H-Pylori, IVIg and Patience

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.

I noticed some black and blues on my body and I didn't recall banging into anything. I also noticed what appeared to be a rash on my lower legs. I really thought nothing of it - other than I needed more Iron or some other kind of vitamin (I thought maybe I was anemic).

Well, the next day at work - I went on WebMD and searched under "bruising and rash." Needless to say - I found a lot of scary things and made a doctor’s apt for later that day. My usual dr. was out – so I met with one of his colleagues and brought my print outs from WebMD - ITP documents included. At first, the dr. thought it was nothing and sort of brushed my claims off - but then he ran a blood test and was shocked to see that I had only 6,000 platelets. My last blood test was from Aug 2001, when I had 168,000 platelets.

So, the doctor was quite nervous and sent me immediately to meet with a local hematologist in NY. She and her partner were wonderful - my father (I had driven to his place in tears concluding the first dr. apt) and I were so scared and they tried to help calm us 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 it 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 kill me.

At the hospital they took about 15 blood tests and I was given a chest X-Ray, sonogram, and CAT Scan. Thank God that my 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 (10 hours a pop!) – the first day I bumped up to 42,000 and day two I was at 81,000 platelets and was released from the hospital. My family and I thought that this crazy ordeal was now over – but oh no.

Two days later I went back to my hemos 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 hurt my joints - esp my knees). They also tried WINRO – which did nothing for me either. I wasn’t hospitalized – but was told to stay at home in bed (and I went on Short Term Disability from work). When I got my period – it was so heavy and I was very lightheaded (losing too much blood) they had to stop it with Provera pills.

Things got even worse that weekend when I went to church on Sunday and fainted. I almost crashed into the pew – which would have sent me straight to heaven - but thankfully my boyfriend caught me. At this point I was totally scared and thought I had a cranial hemorrhage - I had never fainted before. I was told since day one - that under 10,000 platelets was a big risk for head bleeds. I was rushed to the emergency room – where I was told that I had 1,000 platelets and that my Potassium was very low which caused me to faint. I also had more symptoms now – slight bleeding gums/nose and some mouth sores. They did another CAT Scan and it was normal – no head trauma – my biggest concern!

I was then readmitted to the hospital (I had sent a thank you card to the nurses there and I was sent back there before they even received the card!). This time I was in the hospital for about three weeks (thank God for my boyfriend, friends, volunteers, strangers and family visiting me all the time!!!!), while they 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 third time – two daily doses, but again - no elevation). My platelet count ranged between 1,000 and 5,000 for a month.

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 knows 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 a better route than the chemo or other “experimental” drugs I was hearing about.

I then came across some information on the Internet about the possible H-Pylori connection and asked my hemo to test me. She took a blood test and a few days later she happily told me it was positive – maybe we were onto something!!! I then took a breathe test – which turned up negative – but I was told that some of the my stomach-protection medicine that I was on may have messed up the results. My hemo and the consulting infectious disease doctor – decided to treat me for the H-Pylori (especially after the doctors saw the Jan cover story of HemoOncolgy Times - breaking news section - on ITP & H-Pylori – we all felt that this had to be some sort of sign (and it was my first glimmer of hope!)!!! So, I began taking the two-week antibiotics mixture (Amoxicillian, Biaxon, and Previcid). The link to this article is http://www.hemonctoday.com/200201/frameset.asp?article=eradicate.asp (share it with your doctor!!). One of my nurses also wrote an editorial on my story in one of the nursing magazines last year!

One week into the treatment, we began to lose hope when there was no elevation in the platelets (esp. with all the stomach pain I was now enduring – mega medication overdose!). I was so disappointed and thought it was a flop, and began hating the world - so I was now ready to be scheduled for the spleenectomy and met with the surgeons.

Suddenly, it was me wanting to take my spleen out (I was ready to do anything to get back to my life – I was going nuts after a month of numerous tests, hospitals and stress!) and my hemo “firmly” stating it was not yet time to take the spleen out. “Patience” was her mantra for me.

I remember her sitting in my room – I had tears streaming down my face….crying was no longer strange for the once happy me. She told me that she had spoken with another Dr. from John Hopkins who suggested we try the IVIG one more time – this time for 5 days straight. I was not game for this at first, because of the three prior failed attempts and I hated the 10 hour connection time – headaches it caused, etc. Anyway, she persuaded me to try it again (she said there was something in his voice – very professional and mature - that made her feel it was very important for us to try again, especially after the H-Pylori treatment (to see if it now allowed the IVIG to work properly and boost me up).

SURPRISE!!!! The IVIG worked this time and boosted me up a lot each day. I started the 4th round of IVIG at 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 released again from the hospital -- after 3 weeks 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 based on how I crashed back down to 5,000 platelets the time before.

I went to the doctor two days later (Ash Wednesday to be exact -- and I had 217,000 platelets. My hemo, her partner, my parents and I burst into tears of joy! I then went right to church to thank God!

UPDATE:

It's now been almost a year and a half since that IVIG treatment and I'm now staying at about 200,000 platelets (med-free) and PRAYING that they continue to stay up!!!! I'm enjoying life again and I'm finally off the Prednisone - which NEVER seemed to work for me (highest dose was 80mg). Thank God the platelets stayed up when I tapered off the medication!

The Prednisone made me gain about 18 pounds within just a few weeks - which I wasn't happy about - but I’ve since lost almost all of it!!!!! I'm hoping that the H-Pylori did have something to do with my ITP - so that it will be over and gone. NOTE: I was also on the birth control pill a few months before getting ITP - and stopped taking it in January - but that didn't seem to make a difference.

Early 2002 was a crazy few months for my family and I, but I was/am lucky to have a fantastic team of doctors. They continue to take the time to completely listen me 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! Without the information on H-Pylori – I may not have a spleen today and I might not be better yet! It is odd that I went to the dr’s in the first place (I was set to play Volleyball the next day! Talk about a close call), that I found the breaking news story on H-Pylori right when I was about to get the operation and also that of all places --- I fainted in church - talk about signs from above...

Some people are very critical of the whole H-Pylori connection - but it seems to have worked for me. If I can help one person with my story - it's worth it to me to keep discussing it! I had ITP for 1 1/2 months -- which 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 the next day….this was the most frightening feeling in the world and still is sometimes. I constantly wonder if this will happen again – every little bruise I get is 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 (esp – my family, friends and boyfriend –--- who has since become my fiancée!!!).

I wish you all the best of luck in a speedy recover - please feel free to let me know if you have any questions

-- Christina914@hotmail.com  (put ITP in the subject line).