Long road and the spleen is now coming out!!

Yes 50mg hoping to start tapering next week.

I am so very happy for you!

Jeff

Fab news amber - it's about time too!

Congrats on the count!

Counts today 47k last week 360k, since I'm having cold symptoms and its that wonderful time. Colds can drop counts and the combo would bring them down. Plan for now keep taking Promacta 50mg and re check counts next Thursday. She could also tell the the iron pills are helping and its only been a week. I do like the new doctor treat the symptoms and not the numbers. Promacta doesn't keep normal numbers just area 50k which it could be the Promacta that is doing the work but will find out for sure next week. Was told to rest and the get rid of the cold and see what the numbers say next week.

The only thing I am concerned about is that the program I'm on runs out 1/31/14. Don't know what I will do after that but will call them tomorrow to see what I can do......

Amber, have you signed up for the Affordable Care Act insurance? It sure sounds like you would qualify for subsidized healthcare.
Erica

$300 a month is the cheapest and to cover everything its close to $500,. Something can afford

Did you register and shop for it and verify that price? I took a look here kff.org/interactive/subsidy-calculator/ with some wild a** guesses about where you live and what you make and it was looking like closer to $200/month with subsidies.
Erica

Amber, so glad that you are doing better! It's about time. Hopefully, you'll stay feeling better for a long, long time!

Please look into the insurance like Erica mentioned before your program ends. Maybe the doctors can help you figure this out, too.

Good luck to you, and try to get some rest!

Dee Dee

21k today going up on Promacta 75mg but the iron pills are working. Starting to get a sinus infection so started meds for that.

Hey Amber, how's it going? Check in time!

Amber, I, too, was wondering how you are doing? Hope you are doing fine--and that is why
we haven't heard from you!

82k on Monday and tapering Pred (5mg for two more days then done). Last week 65k (at that time 30mg pred), I was fighting a sinus infection and took the last of my antibiotics last week. Re check on 1/16, still on Promacta 75mg, hoping to be able to taper off.

Been busy trying to get the charity program re-up but as of now I can't. So I have been looking into insurance and reading all the fine print (head is starting to hurt).

Hello amber,
and everyone else,
My sister has been dealing with ITP for 8 years, and all of us with her. She had 2 kids (who are very healthy) and has been working thru out . She has tried everything you can think of. In the last couple of weeks its been worse than ever, her gums, her lips have been bleeding, we have been in and out of the hospital every week, now even her eye. She was doing rituxin, and now she has had enough. She would feel good and after a few days she would be bleeding again. She is going to get a splenectomy on thursday or friday, they are at 10K now, so she has to wait till they go up. Reading your posts made me a little stronger, and i will try and get her involved too, so she can be stronger. At times it feel like the world is crumbling on top of us. I am so happy for you, I hope you get 100%. You seem like a good person, just like my sister, she is amazing. I will keep following your posts, and i will let you know about her if you like.
Thank you for your posts and updates, it gives me hope, and its comforting to know that other people are going thru what we are, and that they stay strong and pass this tough moment.
Ciao

Thank you so much Ciao,

How old is your sister? I am turning 33 on 2/2, We are all here for you and yes keep me updated on your sister.

I have a re count on Thursday 1/16, I am feel much better now days and really don't care about the numbers anymore just the symptoms (like everyone has been telling since the beginning). It helps a lot that I have a doctor that I can relate too (she is my 3rd).

What treatments has your sister tried? I think I tried almost everything under the sun before the surgery 11/13.

she tried them all. Nplate, prednisone, transfusion of platelets, reutuxin was the last one she was trying a few weeks ago, she did it twice and now i think she is going to do it a third before surgery , she did an other one that i don't remember the name of. She has tried a lot of stuff. I even got her papaya leaf extract cause i read it can help. But she only took one pill because we got them in this sat. She can't take it anymore, so she just wants to take her spleen out.

she is 35 her name is Denise. i just got off the phone with her, they are going to do a blood transfusion now to try and bring her platelets up for surgery. I am going to leave work now and go hang out there with her. I agree, numbers don't matter as much as how u feel.

thank you so much for you reply, i sent you an email

Ciao,

Amber is a good role model for your sister to follow. Like she said, she had tried everything and just did the splendectomy. Through all this Amber has really kept her "head" and didn't seem to panic too much. This is very important for your sister. I think she is really panicking and this doesn't help her to get well. Her bleeding might subside if she calmed down and gave her body a chance to rest. Most of the time, Amber's platelets were very low, she you can follow.

And, like Amber said, it isn't just about the numbers, it is the symptoms and getting them under control. Usually when my platelets go down below 10, I will have the bleeding for a while--then usually within two weeks, it starts to get better. Hopefully, your sister can work on getting these symptoms under control, work on her stress level, and then start to feel better.

If you have read Jack's post, his platelets are at 15 and he does just fine. Goes to work and has a second job in a band group. So, there is hope

Good luck to you and your sister, and I will remember her in my prayers.

Dee Dee

Dee Dee

Thank you for the kind words!

Ciao,

Dee Dee is right about the stress (it is no good). I use to stress about everything, now days I try and not too stress about anything. My husband has learned a lot from my 3 hospital stays last year (stress along with all my responsibilities (which I learned to share with my husband now)). Hubby now writes all checks for bills, which is a big weight off of me. I really think ITP brought me and my hubby closer together, it was a big reality check for us.

32k today down from 82k last week. Checked the charity program right now they approved for 58% from the 100% I had last time. It is better than nothing just as long as I get CBC from regular doctor and see specialist (not much) when I have too. Oh and not get hospitalized at least I know I can use Pred for emergency case. Just another day and of course I over did it when I got home, vacuumed, dishes and washing sheets (still sore from surgery and didn't realized how much you use your body core with working on floors).

Sorry your count is dropping very glad to hear that your numbers are at least in safe ranges much better than the single digits.

On a side note anytime you want to come to my house and clean your welcome too it. I come home from work and sleep it seems all I do these days is sleep and work. So my house is a mess.

Winnifred

your so funny lol... I am off on Wednesdays (which I try and not do anything since it is my day) Thursdays I get off at noon and most of the time to the doctor and it is my run around day then try to clean some when I get home. But yes very tired, I will get a wild hair and it doesn't last long so I have to take advantage of it while it last.

Hey amber, Im sorry about ur count, just keep up spirits up. I bought these pills for my sister. They are papaya leaf extract, she only got to take one, then she was taken to the hospital cause they were just too low. its worth a shot, they are natural and can't hurt, unless you are allergic.

also, you should look into oregano oil, great for fighting infections, since you are more prone to them.
I'm gonna get it for my sister once she's out of here.

Today 68k (husband said maybe you are starting to level out) sure hope so. I also found out today that the Charity Care Program will cover only 58.15% this time around. Looks like I'll be getting CBC at family doctor and see specialist when needed. Won't be able to get IVIG's or platelets this time around.

Does anyone know where I can get some bubble wrap so I can wrap myself up? Since I am so very clumsy... have to look on the bright side LOL!

www.stockphotopro.com/photo-thumbs-2/AM6T16.jpg

This could be your new profile photo!

LOL love the photo....

Amber,

The good news is that you are doing better!! Hopefully, you will stay healthy and will not need the IVIG for a while. I actually would not let the doctor give me any platelets since it is only temporarily. And, then, if they didn't get the right match, a few times they didn't even work.

Good luck to you and try not to "bump" into any thing!

Dee Dee