5 months of UGH!

hi my name is kay and i was diagnoised 5months ago with itp. I was a plasma donor for many years and then for no apparent reason my iron levels started to go way down so they told me to go see my doctor to find out why. i was also bruising very easily and had problems with my gums bleeding and a weird red rash. So off to the doc i go. first i find out that i am type 2 diabbetic, okay a bit scary but doable. i sent up a appointmetn for 6 days out to come back for a counsultation and to discuss my labs. next morning i get a phone call come in ASAP!!!! so i do and i am told that i am very sick with a platelet count of 2 and to go to the hospital ASAP! I am freaking out. was in the hospital for a week and thats when i was diagnoised. since then i have been in the hospital 7 times, had steriods, IVIg, N-plate shots, and my spleen removed. i am still very low. all the treatments either didnt work at all or only for a few weeks. the longest i have had decent platelets is 5weeks and that was with the N-Plate. Now my hemo Has put me on Low-does Chemo medication combined with the N-Plate again. He is hoping that now i dont have a spleen to eat the plates the combination of medication will work.
I feel like a human medical experment. I am so tired of being sick and tired. how do you all do it for months/years at a time? i am so depressed and done with it all and its only been 5 months. i am scared about the chemo pills, yes it is low-dose but it is still posion and has some pretty nasty side effects. I hope i wont experience to many. I can'r imagine nausa, vomiting, and losing all my hair on top of everything else. as it is i barely have the energy to get out of bed in the morning. sorry to be such a downer but i needed to vent. i am so glad i found this site.

SnowTiger: I really like your nickname. In case you didn't know, the nickname for this site is "ITP Vent" - we all need to vent at times and this group is one of the best because we truly understand the need, the frustration, the emotions and the fears. Use us for knowledge, vents, guidance, support and any other reason you need.

Hello - I'm glad you found the Forum. There are many people who will share their stories to help you through this. What pills are you taking? It might help to mention that so others can give you their experience - maybe it won't be so bad. Is it CellCept or Imuran? If so, that has been used by quite a few people.

I'm so sorry you are having such a difficult time. This disease can be so tough. The good news, if there is any in this situation, is that you are not alone, and people have come back from what looks like a no-win situation to lead fine, healthy lives. I'm one of them. You will find my story and other reports in the story section of the web site, in the newsletter, and in the posts. www.pdsa.org/join-the-community/personal-stories.html

The DVDs from PDSA's conference are also a wonderful resource to learn from top ITP physicians and others. You can buy them in the platelet store.

As Sandi mentioned, there are lots of treatments for ITP and many other things you can do to improve your overall health and perhaps help your platelets. ITP can be a great learning experience, although not the type of education anyone would choose.

You can also contact PDSA for information on physician referrals if you want a second medical opinion. There are so many different ways to treat this disease.

I hope you find some things that help you soon.

my hemo prescribed Cytoxan 25mg once daily. i need to go pick it up. will probably start it tommorrow. i did some research on it and quite frankly i am a bit freaked out. some pretty scary/bad side effects but i am willing to try anything at this point. i want my life back.Kay

Hi snowtiger, you've come to the right place to get your life back. My husband is new to ITP too, but the people here have already put us at ease in dealing with it. They tell us to treat the symptoms, don't worry so much about the counts. That's how we're dealing with it. Don's had a variety of treatments, most didn't work (or work well), he's presently on N-plate with some success. That's where the treat the symptons not the count comes in, because he's been up and down with counts, but even if he's dropped he isn't having symptoms, so life's pretty good right now. Yours will be too. And continue to vent as needed.

1988 I WENT THROUGH THE REMOVAL OF THE SPLEEN AND EVERY THING ELSE, THAT WAS OUT THERE TO TRY. YES EVEN CHEMO. HERES THE GOOD NEW AFTER 4 SHOTS OF THE CHEMO EVERY THING WAS BACK TO WORKING, AND STAYED THAT WAY FOR TWENTRY YEARS. 2009 THEN I HAD A RELAPEX. ANOTHER FIVE MONTHS WENT BY WITH EVERY KIND OF MEDS OUT THERE THEN WE FOUND A ACCESSORY SPLEEN, NOW SHE GONE AND WE MOVING ON NORMAL AGAIN. THERE IS HOPE !!!!!!!!

thank you so much for sharing. its good that he hasnt had symptoms.i hope the N-plate continues to work. if you or any one else here wishes to contact me my email is ******************************* would love to hear from ya.kay


Edited: If you would like to communicate privately, please use the message system here. You don't really want to share your e-mail address with the whole world, do you? There are a lot of nuts out there.

Hello Kay Welcome to the place you can vent away and not have to worry about offending anyone in doing so!
I can relate to the "freak-out" phone call! I went to my Gyn for a check up due to unusually heavy bleeding. While there I mentioned that I bruise kinda easily, that was my only symptom at the time. So he ran a CBC and called me later in the day and said "You have ITP and I'm sure your regular doctor will want to admit you to the hospital"! I was like.....HUH?! It turned out he didn't admit me! Hallelujah for that! My hemo didn't even admit me with a count of 1! But an overly zealous ER doc did admit when I was at 4. Anyway, you asked how we all deal with it? Kinda like the 12 step program, One day at a time! One hurdle at a time. Take each step slowly. ITP itself won't be your demise. Complications from ITP can, ie: hitting your head and bleeding out, but just the disorder in itself won't. I've learned over the 6 months I've had ITP that you need to slow down in every area of your life. I'm talking literally! Like even slow down walking! Life is but a breath, enjoy each second of it.

Oh my gosh, that comment about the 12-step thing is so true!
One day at a time. We don't have control of our platelet levels, but we can focus on what we do have control over, such as taking care of ourselves - mentally and physically.

With this diagnosis, I have started to let everything out. I always kept things to myself before - I was always the person who was there for everyone else but didn't always ask for help and kept my mouth shut and continued to put up with people who offended me or hurt my feelings. I took a lot on for other people and had quite a bit of unnecessary stress.

Those days are over. I only care about the needs of my children, myself and my husband. Everyone else is on the back burner, including friends and extended family - and they have noticed.

Not to say that I've turned into a rude witch or anything, but when you feel so tired all the time - you have to really prioritize what and who you're going to spend your limited energy reserves on.

The new attitude didn't raise my platelets any, but it did help me to remain calm, accept the results, re-group and carry on.

I've never been hospitalized for ITP and my lowest charted level was 10.

Hang in there - and vent as often as you need to. This is a safe outlet.
-Chelle

I know what you mean Michelle about haveing to prioritiz things. right now i am so tired all the time and i have noticed that the cytoxan is making it worse. hardly have the energy to get out of bed. Sometimes it can cause problems between me and my Honey. I love him dearly and he has really been there but at times he just dont get how whipped out i am and I hate asking for help but sometimes i realy need it. I told him about this site. maybe it will help him understand better what i am going through and that i am not just trying to get him to everything. I will try taking it one day at a time but i am a worier by nature.(LOL)-kay

Hello Snow Tiger,

I'm sorry to hear that your ITP journey has been so frustrating so far. I understand how you feel as I too did Cytoxan/ Cyclophosphamide but I did mine IV 1 gram a week for 4 weeks. it left me drained and naseaus but didn't do much for the platelets. Keep the faith and ITP does get better with time. You stop obsessing and start living your life again. Are you in the US? have you tried Rituxan, Nplate or promacta?

Hello,
Snowtiger, I'm a worrier too, and it helps so much if you find something to vent your stress on like ceramics (that's what I like). Just try to bear with it. Sorry it's been hard so far.