My ITP Story and Achieving Remission!

I want to share my story with the hope it can help other ITP patients to stay strong through these trying times. This is not an easy disease to understand and there where many times I just wanted to give up. Hopefully my story can bring inspiration to newly diagnosed ITP patients and those that still continue with the battle of this disease.

November, 27 2011 was a day I'll never forget. I remember it like yesterday, I was driving home from my parents house and noticed these large bumps in my mouth, they looked like blood blisters, eventually I would come to find out these are call hematomas. I was a little worried about this since I had never had these before but figured I would wait until the following day and see if they were still around. As the night grew later, I started to see these little red dots cover my body (petechia), which sent me into a slight panic, I figured this was not normal and went to the emergency room where I got admitted as a patient. Come to find out my platelet count was at 2K. After many days of test the final diagnose was ITP.

The first method of medicine was cortisone steroid use for me. After a week of steroid use my counts finally went up to 25K and I was released from the hospital but that would be short lived as I was remitted to the hospital a week later with a count of 2k again. This was a continual thing for me for the next 2 months. My daily steroid dosage continued to climb and eventually I was taking between 120 mg to 140 mg daily. This was a nightmare on its own, I hated steroids and all the things they did to me both physically and emotionally. I had an amazing Hematology Dr. though, there were a few things I’m not fond of that he had me do, like take a 140 mg of steroids but for the most part I was blessed to have a doctor that knew what he was doing and the methods to treat this disease!

Since steroids were not helping maintain a decent platelet counts, well, what I considered a decent count of 25k, we started to look at other options. The next method of medicine was IVIG infusions; this gave me a huge increase in my platelet counts. Usually after an IVIG infusion I would have numbers between 175k – 300k but this would not last long either, not even 3 days after these counts, I would be back around 2k-3k. So for the next 3 to 5 months I would spend every Friday evening, Saturday and Sunday at the hospital receiving IVIG infusions just so I could carry on with life.

Finally we made the decision that this was not going to fix the problem and went on to trying N-plate. N-Plate didn’t seem to work for me all that well, unless I actually did N-Plate and IVIG Infusions together, then I had a great influx in my platelet numbers sometimes between 500k – 600k which was way too high. After a year of fighting a very strong case of ITP and not having any increased results or really any method of giving me a steady platelet count of 25k (my average count was 2k – 3k) we decide it was time to look into a splenectomy. I decide I was going to have this procedure done, I was tired of continually fighting this and I knew there was no guarantee with this procedure but I was willing to take the risk. I had the splenectomy done and for the first time in a year I finally started to see some steady numbers. I did have some serious complications with the surgery though and ultimately had to be rushed back to the hospital for another emergency procedure. After all of this my counts shot through the roof while I was in the hospital from the second surgery my counts went over 1 million. With all this being said I am now 1.5 years past my splenectomy and have continual counts from 300k – 500k!

Through this whole event, I’ve taken away many beautiful things; I actually call it my beautiful disaster. I’ve become a better and stronger man, I’ve learned to never take the little things for granted and never let anyone or anything define who you are or who you are going to be in life. Appreciate the ones who are going to be with you through this battle and always have a positive outlook on this horrible situation and take from it the most you can. I truly tried to never let ITP win the battle of A.) Giving me a reason to have a bad attitude towards anyone, I truly always wanted to be an inspiration to other people that were ill, if I could walk through those doctor doors every morning with a smile on my face and a chipper attitude I hope I helped someone else that might have been going through some hard times their self. As an ITP patient I found myself around cancer patients a lot I know I had it bad but there was always someone that had it a lot worse than myself, I had no room to be selfish amongst other people that were on their death beds. B.) Change me as a person in a negative manner, I took this beautiful disaster and allowed it to shape me in a positive aspect.

I appreciate you listing to my short story of my events with ITP. If I can help anyone out there that has ITP in any form or fashions please do not hesitate to ask! Stay strong my ITP friends there is hope for remission!

Sincerely,

Chase

Thank you for telling us your story - and thank heaven you are in remission, happy for you!

Yes thank you for sharing. Many people have to make the decision of whether to remove the spleen or not and to me the best way to make that decision is to be informed. To me the best way to be informed is not not only research but to hear others stories!

Here's hoping you remission continues and ITP never returns.



Oh and questions

1. were you told to take antibiotics daily or not?
2. Do you notice an increase of illness?

Winnifred,

Thanks for reading my story! You're right, many people do have to make this decision for the possible option of a splenectomy, this option is not for everyone, once you have it done its final there is no going back and putting your spleen back. For me I wanted it to be my last option. I did my research diligently and decide the risk was worth the reward, I was tired of going to the doctor everyday and spending every weekend at the hospital for treatments. I also accepted that there was no guarantee of it working, and that if it did work there was still a chance for my ITP to come back. I have been lucky enough to have had it be successful to this point!

To answer your questions.

1.) I don't take antibiotics daily or ever unless I get sick with some type of infection. Before the procedure I recived a few different vaccinations one being for pneumonia and to be honest I can't remember the other two.

2.) I don't get sick anymore than I did with my spleen. I know this sounds funny and actually in theory makes no sense but I seem to get sick less than I used to. Maybe it's do to my change in life habits by eating better, working out and always being diligent to wash my hands.

Hope this answered some of your questions. If you have anymore please feel free to ask!

Sincerely,

Chase

Chase:

Congrats - I hope the remission lasts too!

Two things - First, you need to be sure to get those immunizations for life. Updates are a must, so it's good to be familiar with what you need and when. You might need to remind your doctors; don't expect them to keep track of it.


Vaccinations for People without a Spleen:

Three bacteria for which you will be or have been vaccinated for that cause the most
severe infections.

1. Pneumococcus vaccine (Pneumovax) is used to prevent infection caused by the
pneumococcal bacteria. Pneumococcal infection can cause serious problems such as
pneumonia, meningitis (infection that causes inflammation of the membranes covering
the brain and the spinal cord), bacteremia (severe blood infection), and possible death.
The pneumococcal vaccine is recommended for everyone age 65 years and older,
persons who have chronic disease, live where risk for disease is high, have weakened
immune system or have had their spleen removed. Re-vaccination is required once
after 5 yrs.

2. Haemophilus B vaccine protects against illness caused by Haemophilus influenza type
B bacteria (Hib). In adults this bacteria can cause life-threatening illness such as
meningitis, pneumonia, pericarditis (infection around the heart) and septic arthritis
(bone and joint infections). It is also one of the recommended childhood
immunizations.

3. Meningococcal vaccine is an active immunizing agent used to prevent infection cause
by certain groups of meningococcal bacteria. Meningococcal infection can cause life-
threatening illnesses such as meningitis and bacteremia. Meningococcal is also one of
the recommended childhood immunizations. It is also recommended for persons
visiting an area recognized as having epidemic meningococcal disease such as sub-Saharan Af
rica, Nairobi, Keya, northern Tanzania, New Delhi, India, and for persons
trekking in Nepal. Meningococcal disease in Americans traveling in these countries,
however, is rare. There are 2 forms of Meningococcal vaccine, Menactra and
Menomune. You will receive the Menactra vaccine if you are 55 yrs old or younger.
You will receive the Menomune vaccine if you are over 55 yrs old. If you receive the
Menactra vaccine you will need a second Menactra vaccine 8 weeks later. Both vaccines require re-immunization every 5 yrs thereafter.

4. A yearly flu shot is also recommended.

www.med.umich.edu/1libr/Surgery/GenSurgery/SplenectomyVaccination.pdf

Second, asplenic patients are not known to get sick more often. The risk is that when a person does get sick, it can become serious very quickly. You need to be vigilant and seek medical care quickly if you develop a fever.

You seem fairly informed, so excuse me if I'm telling you things that you already know.

Chase,

Thank you for sharing your story. I had a splenectomy in 2000, and I also have had less colds, flu, etc than before. I know i am more careful about washing my hands and being careful around sick people......that is hard because I work in an elementary school, it's a germ factory. I always get a flu vaccine. In England people have to take antibiotics every day, but that is not the protocol here.


Like Sandi said, keep up with your vaccines, that is important.

Sandi,

Thanks, those would be the other two vaccinations I received. I'm definitely going to keep it a priority to stay current on all my vaccines!

It was inspiring to read your remission story. I have been recently diagnosed with ITP. I have gone down the rapid road of IVIG infusions, steroids, and 4 Rituxin infusions. I had the head to toe petechis and mouth sores and was admitted with a platelet count of 0. I was diagnosed Nov. 11, 2013. My highest number was 144,000 after treatments but as they reduced the Predisone I dropped to 108,000.I find out the new count tomorrow from increasing the steroid to 20 mg again. Its amazing how you begin to live around a lab report. I am so glad to find this support group as I have been feeling lost in this condition.
Thanks again, Melodee

Boudro, Thanks for this amazing story.

Hope you stay "Remissed" (English is not my mother tongue)