Kittie G update

I just posted this in another section, but I'm very happy w the news today, so I thought I'd repost here as well for any of you who've been following my journey.

Update!!

I went to a new doctor today at Johns Hopkins. My hematologist had suggested him for a third opinion because, quite frankly, my hemo was getting tired of me refusing to get a splenectomy. He suggested the new hemo saying "he's just going to want you to get a splenectomy as well, but if it makes you feel better....."

I love this new guy!

Here's why:

1. He really listened to me. He looked at my records and was a bit worried about my numbers, but he listened to me.
2. He didn't freak out at my low numbers.
3. He really reviewed what we have tried, and how long each treatment worked.
4. When I told him I didn't want a splenectomy and gave my reasons, he said I didn't need one.
5. He said I could always get one later if the need were still there.

And the most important reason I love this guy:

6. He wants me to stop chasing the numbers.

He only wants me to treat if the numbers are lower than 10k, AND if I have bleeding issues. he doesn't want me on a steroid unless my numbers are also partnered w bleeding issues. He believes that, for me, the ITP is less dangerous than the potential side effects, which is wild, because that's what I've been saying all along.

Because of this, he said for now, he wants me to test once a month, we will treat only when necessary, and visit him again in 4 MONTHS!!! He wants me to be aware of any bleeding, and if things change come in. But if not, I won't see him for a while.

This was almost shocking news - I have to admit, after being told "you're gonna die" at my lower numbers and seeing my hemo once a week like clockwork, it's amazing to have a dr with such a different approach. It's like I finally found my doctor soul mate!!!

I feel really weird now - like, a sense of freedom, but apprehension. It's like I got used to the institution of it all, and the patterns.

So finally, the topic has come full-circle: at least for Kittie, I can "do nothing", with close monitoring. I'll still be on here all the time, and I'll still report how it's (the careful observing) going. The PDSA boards have been the ONLY part of ITP that was good, and unlike my last hematologist, I have no intention of leaving those behind!!!

It's really great to hear you finally found a good dr. I like mine, well, I guess he's ex mine, seeing as he discharged me last year. Keep the up dates coming!

Thanks Cindy!

It's so much to finally have a doctor who seems to be treating me as a whole person, rather than as some numbers on a piece of paper. I'm on a "good doctor" high!

Kittie,
thanks for your post re: my daughter and i just wanted to post here to say I'm so glad you found this doctor!! I hope it keeps going well for you. I'm learning from all of you and will be following....
thanks for your quesitons and support yesterday and good luck with your journey.

Best, Firkins

That's great, Kittie! He sounds wonderful and makes absolute sense. I did exactly the same thing when my counts were up and down.

Thanks Sandi - welcome back!

Hi Kittie,

I was so glad to read this and happy to hear you have a good doctor. When I went to see my internist in February my doctor discovered I had low platelets and immediately sent me to a Hematologist. This doctor told me every horrific thing that was going to happen to me and couldn't understand why I didn't want a prescription for Prednisone. I kept putting him off for a few weeks and went back to my internist and said "find me another doctor". I went for a 2nd opinion and thats all it took. I loved the man. Instead of being negative he was so upbeat and positive. I think he could tell I was petrified and he came over to me, put his hands on my shoulders and said, "it's gonna be ok". A totally different approach from the first doctor. He to listens to what you have to say and he is not one of those doctors that can't wait to take your spleen out. I told him I am quite fond of my spleen, thank you very much. He just smiled. :laugh:

What a difference a doctor can make, huh? Good for you!