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After 6 years of ITP....

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15 years 7 months ago #1036 by tortie
After 6 years of ITP.... was created by tortie
I'm surrendering to the powers that be. It will be a few weeks until I meet the surgeon and then probably another month before surgery. It's time. I've got to the point that I realize I won't get another option or chance of remission. My counts just won't improve or hold. The best I get from Anti D is 55k for a few days and then back down below 10k. I'm hoping this buys me time. Maybe a new and improved treatment will be available later.
I'm a mixture of emotions. I tried many things including naturals, and my counts gradually and continually dropped lower and lower. I tend to have this thought that since I never got a real remission the splenectomy won't work for me forever, but I'm hoping for at least a few years. I need a break, I'm really, really tired.....

Michelle
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15 years 7 months ago #1037 by barrelgal
Replied by barrelgal on topic Re:After 6 years of ITP....
Good luck Tortie. While I haven't surrendered yet, the lure of a possible remission is great and I completely understand. Please keep us updated on dates and I'll be rooting for you (and your platelets!)
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 7 months ago #1042 by Sandi
Replied by Sandi on topic Re:After 6 years of ITP....
Well girl, I thnk you've given it everything you had. I know that decision was hard for you, but now that you've made it, go for it!

Good luck!
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15 years 7 months ago #1061 by CindyL
Replied by CindyL on topic Re:After 6 years of ITP....
Good luck, Michelle! I hope you are one of the success stories. Like the others have said, keep us posted.
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15 years 7 months ago #1062 by mendenmh
Replied by mendenmh on topic Re:After 6 years of ITP....
I hope this works out as well for you as it has for me. I had a splenectomy just under 3 years ago, and have had excellent counts since. I know it is a major decision, and has its risks, but all the other treatments have their risks, too.

I did it because I was sick (literally) of the treatments, and decided taking a big roll of the dice on something that had about 65% chance of working for a long time was worth the try. With modern vaccines (HIB, pneumococcus and meningococcus), the serious infection risks are quite low. I have had no increase in any sort of disease since having my spleen out (I don't get colds, etc.).
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15 years 7 months ago #1063 by lili
Replied by lili on topic Re:After 6 years of ITP....
I think a splenectomy at this point is totally reasonable. Actually, it's reasonable at any point, although some people seem to be rushed into it by their doctors. You certainly haven't rushed into it and have given it a lot of thought and tried everything else. I hope that you're in that lucky 70% for whom it's successful. Really, when you think of it like that, the odds aren't so bad.

Good luck,

Lily
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15 years 6 months ago #1288 by tortie
Replied by tortie on topic Re:After 6 years of ITP....
I'm having major anxiety over this. I worry about bleeding out during surgery, blood clots after surgery, sepsis etc. I've had all my vaccines but they say that for 2 years after splenectomy you are at a higher risk of complications. The death rate for sepsis is 50-80%!!.
I meet the surgeon on Tuesday and I'll find out how soon I go. I've fought this for so long it's really hard to trust that everything will be okay. I'll probably be at the Dr's office everytime I get a skin rash!!!!

Michelle
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 6 months ago #1290 by Sandi
Replied by Sandi on topic Re:After 6 years of ITP....
That's totally understandable. I'd feel the same way. Just be very vigilant and don't mess around with fevers. If you get bit by a dog, go to the doctor. I've also read that gardening or having hands in the dirt can cause sepsis due to the bacteria, so wear gloves if you do that.

Michelle - you are very aware of the risks and that's a good thing. You'll stay on top of it.
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15 years 6 months ago #1321 by oroman
Replied by oroman on topic Re:After 6 years of ITP....
Hi Michelle!
Do not worry things will get better for you,just have faith.It's been 7 years since my splenectomy and my count's as of last week were 283K,no treatment and I see the same happening to you,so have faith.Orlando
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15 years 6 months ago #1358 by gsh
Replied by gsh on topic Re:After 6 years of ITP....
Good luck Michelle and sorry you're struggling with this. If you feel alone just remember that there are so many people out there without spleens for many reasons.
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15 years 6 months ago #1363 by sannyt
Replied by sannyt on topic Re:After 6 years of ITP....
good luck
Sandy~~ mom to Doug.
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15 years 6 months ago #1398 by michel
Replied by michel on topic Re:After 6 years of ITP....
from one Michel to another Michelle, sorry to hear your struggling. I hope you get great and counts. Just a friendly reminder a lot can be said for the staying positive throughout this process. I'm sure positive attitude has probably helped with even strager illnesses.
take care.
Michel
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15 years 6 months ago #1509 by teach
Replied by teach on topic Re:After 6 years of ITP....
Tortie, I had a splenectomy almost 30 years ago. I am a retired teacher, mostly first grade-with all their germs-and have done really well. My doctor said I would be much more likely to catch any illnesses the children had, but I was very careful, kept the Lysol makers in business, and have hardly been sick at all. Count stayed good for many years, but through time, count has dropped. Have had lots of rounds of prednisone. It, too, worked good for a long time, then it became less effective...I hated taking it. Have now been taking Nplate for five weeks. It is an injection once a week, and I'm getting really good results with it. Perhaps by the time it is no longer effective for me, another new medicine will have been discovered.

I hope you do well with your surgery and your platelet count goes up and stays.
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15 years 6 months ago #1571 by FranL
Replied by FranL on topic Re:After 6 years of ITP....
Hang in there Michelle! I've had ITP for almost 13 years and tried all the treatments except Rituxan. Going for Splenectomy myself soon. I hope we are both part of the 65 - 75% of us who have long term to permanent remission! Best of luck to you! Keep us posted.

Fran
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15 years 6 months ago #1821 by jmcgaff1
Replied by jmcgaff1 on topic Re:After 6 years of ITP....
Hi Michelle-

I have been disgnosed for 9 years. I have tried most of the treatments and I to have decided to go for the splenctomy. I have the same fears as you. I have had my vaccines, found a good laproscopic surgeon, read everything out there and I am still nervous.

I think it is a major decision. I did not want to have any what ifs, so I have tried some natural options as well with no improvement in my counts. With any surgery there are risks. But there are risks we take everyday just living life.

I have my surgery March 31st. I will keep you in my thoughts, keep me in yours. Let's keep in touch and report our awesome platelet counts (thinking positive) post-op!

Jennifer
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15 years 6 months ago #2509 by tortie
Replied by tortie on topic Re:After 6 years of ITP....
I'm still learning about this new site, I just found the option "my discussions" and realised I had missed some of these.

Thank you guys for your understanding and support.

I met my surgeon a couple weeks ago and I am very confident in his experience. I told him how important it was for me to avoid this for as long as I have. His eyes got big when I told him that I was okay with counts above 10. In 2 weeks I go for my CT scan and also a pre op appt. Each appt is 2 hours!!!!! I just learned that I will have to drink some kind of dye every 1/2 hour for 2 hours prior to the scan, lovely......My surgery is at the end of April.

My spouse is going on a 10 day fishing trip 1 week after my surgery, so I hope I can move around okay by then.
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