PLATELET PANDEMONIUM - newly diagnosed with ITP

Dear Kay,
I have been following your story and am SO sorry to hear about the latest news that your count has dropped to 57, after the splenectomy! I can only imagine how that must feel, with all that you have gone through. My latest count was 30 and I'm (re) scheduled for an open splenectomy on the 28th. Like you I'll have IVIG (again) next week, or this week - if/when the insurance auth comes through. It is SUCH a crummy roller coaster ride. IVIG and Rituxan only seem to buy me a few weeks of higher Platelet Count. Like your doctor (I'm sure) mine is positive that the splenectomy can make a difference. He has seen good results. I will pray that your count bounces back up and stays there! And that you feel better soon. I'm also praying for a cure to ITP. A cure for all of us. Week to week CBC's are for the birds. YOU are in my thoughts and prayers Kay.
Loretta

Kay:

I am really sorry to hear all of that. I can imagine how disappointing it would be. I've known others that have had to use blood thinners and also had low counts. It can be difficult, but it can be done. One woman I know never went above 50k and was usually at 20k, but still had to use the blood thinners for years due to several serious clots. She has Lupus and due to many other problems, she had a bone marrow transplant. It did not cause full remission of Lupus, but she did go into remission with ITP and was able to stop the blood thinners too. She nearly died from the procedure though and spent almost a year in the hospital.

Keep hoping, things can still improve. Rituxan hasn't had enough time yet to take affect if it's going to, so you still have that to hang onto. If not, you might stumble onto something else that will help. Keep us updated!

PS - I never mind long stories as long as there are paragraph breaks, so thank you for that!

Hi Kay!

I am sorry that things are a bit rugged right now. I know the feeling. I have you in my thought and prayers.

Maybe some Carribean rehab time is in order???!!! Keep fighting the good fight!

Jeffrey

Hey Kay,

How are you doing? I've been thinking about you and hoping you are feeling better. A small group of friends and I are going to be making Prayer Ties next week, for a Yuwipi Healing ceremony and I will make some ties (they look like little bitty dolls) for you, filled with prayers that you get well soon, and that the worst is behind you. The ceremony itself will be held on the 2nd of March - who knows maybe you'll feel something special that evening

Jeffery, if you are tuned in, I am going to make prayer ties for you too!

I had an IVIG treatment yesterday. It was a long day, but it paid off. I feel so much better this morning - Going to have a splenectomy on the 1st of March. That's the latest confirmed /rescheduled date.

Kay/Jeffery - I hope you have a wonderful day

Hey Kay,

Bummer about the platelets going down. Hope things get better soon. I really recommend the book "Wish by Spirit".

I have been doing homeopathy for 3 weeks. My platelets haven't gone above 5 but it can take some time. I am off the Prednisone and feeling pretty good.

I'll update you as I go along. It can take a few months to find the right remedy.

Light and Love,
Patti

You guys are all amazing.
A lot of people have said a lot of nice things lately (and I'm grateful) but, somehow, coming from you guys it means so much more to me.

Not much has changed since I posted last. Platelet count goes up, platelet count comes down, IVIg, platelet count goes up, and so on and so forth. Still doing CBCs 3x a week.

Most of the past week, I've just been exhausted. Getting up is exhausting. Taking a shower is exhausting. My brother came over to cook me dinner the other night. He did all of the cooking AND cleaning and by the time he left I was exhausted.
I haven't been this exhausted since I had mono!

The good news is, my last dose of IVIg managed to hold for 10 days (which I thought was a bloody miracle). My count peaked at 187 (from 41) and I was ecstatic. But with the rise comes the fall. Once I fall below 75 we will repeat the IVIg.
Good news part a.) Just one dose worked. We didn't do a second day.
Good news part b.) I don't have a B, but if you have an A you have to have a B soooooooo, yeah.

My mom says she knows when I'm really feeling crummy because I stop making bad jokes.

Anyhoo, not much is new. Patti, you'll have to tell me more about your homeopathy treatments. When I get my driving privileges back, we'll have to meet up!

Hope everybody has high platelet counts and normal CBCs!

You're the best!
Kay

Good morning Kay,

I made a prayer tie for you yesterday to include in the healing ceremony, I prayed that you get well... that your count goes up and that you feel better, better better!!! You will have a whole lot of people in Northern California praying for your improved health and happiness. You have such an amazing positive attitude and personality that comes through in your writing - now if we could just get your body to cooperate

YOU are AWESOME, COURAGEOUS, STRONG and LOVED by so many. YOU are the best!
Loretta