update on me!

My heme will not move the date. He thinks even may 4th is waiting too long. I feel like all I can do now is hope and pray that my count goes up to a healthy number before my surgery and stabilizes. Elton John isn't to be. I need to stay away from crowds of people for a week after surgery. I know someone that wasn't able to get a ticket and is willing to buy it from me even on the day of. My dr. also said that ivig isn't widely used anymore because it contains viruses and proteins that people could easily react to. Get my blood checked today. Maybe it will be up! All I can do is hope. Thanks people for your support and kind words. This can get trying, can't it?

I'm surprised by your doctor saying that about IVIG. Dr. Liebman at USC does use IVIG (he is one of the top Hemo's in the US). My doctor was a student of Dr. Liebman and he truly believes in IVIG. I actually had it 5 times during my stay in the hospital last July and August. My doctor did a very slow drip on the 2nd, 3rd, and 4th time. Actually, some of the drips were given over 24 hours--but it did work. It is very expensive and I was told after the last drip that I would not be able to get another one for a while (not sure if it was because of my insurance--never did ask).

Dr. Liebman believes it is something you give when platelets are very, very low--sort of like a healing drug. All this medication that we take is all a risk of some sort. We are at the mercy of medication at times. Did you ask the Mayo Clinic about IVIG?

I know this is hard for you, but please keep doing your research on ITP so that you can guide yourself in your treatment plan and be your own advocate. It needs to be your decision on taking out your spleen. I am sort of rebel and I do argue with my doctors (have even dismissed two doctors because they didn't understand about ITP). But this is just me and how I am. If I do make a wrong decision, it will be my fault. I actually tell the doctor what I will take and what I will not take--even if my platelets stay low. I sort of think about it for a long time until I feel my decision is right. They do get upset with me at times. I've had my Dad and brother die from blood disorders (bone marrow disease) and I always tell the doctor that I need to protect my bone marrow. A lot of the drugs do affect the bone marrow.

Hope I didn't go on too much, but you need to be your own advocate. Good luck in your surgery. I will say a prayer for you that everything goes great. (Still hope you can make it to the concernt!!)

I was back in the hospital two days ago receiving more platelets. They were down to five. I reacted badly to the platelets so that was my last platelet infusion as far as I'm concerned. I am going forward with my surgery because nothing else is working. I am feeling pretty good about it. My heme and I have already decided that if it doesn't work ( and I think it will) I will try Nplate. So next week at this time I will be spleenless....:blink: I have read so much research and literature about itp and always come back to thinking a splenectomy is the best next step for me. Thanks for the prayers!

Good luck to you! I wish you success!

Reactions to platelets can get worse every time, so I'd try to stay away from that too and only use it in an emergency.

Good luck and keep us posted on how you are...Will be praying for you that day.
Shannon

Good luck to you and my prayers will be with you for a successful surgery. Please keep us posted. I have been in the same place as you before--so I know how you feel. My platelets were at 1000. Please always try to keep your hope up and think positive.
DeeDee

I just wanted to mention something else to you. My platelets have been at 1-4000 for two months at a time. During that time, I'll have to say that I could actually live with low platelets as I was not having much bleeding. My biggest fear and problem was dealing with my doctors. They always seemed to put the fear of "God" in me. I just wanted to do a wait and see and times--and they definitely did not. And, actually I did not feel that bad. I did feel bad after having all the treatments of Decadron; it seemed to drain my body and I actually started to look "sick". But, I pushed myself and kept working out, swimming, stretching, and "resting" (very important), and watched what I eat and drank during the "bad" times.

Just try to be positive and rest after your treatment; always remember the story of Joan as she is an inspiration.

Will be thinking of you on the 4th. Good luck with the operation and I hope its not too long before your platelets start to rise & keep going up an up.
Benny.

Good luck with surgery Timons, I hope it works and your platelets continue to rise. This has been a difficult time for you but I am sure soon you will be much better.

Timons--we will all be thinking about you and praying for a successful operation. Good luck to you and hope your platelets continue to rise:)
You will be in my prayers,
DeeDee

goodluck

my song for the day:
www.youtube.com/watch?v=B300gQkgDS0&feature=related
and away I go....

I am praying for you!!! God is so good!:woohoo: I will be praying for a speedy recovery! Keep us posted!

Shannon

Good luck! Hope it goes smoothly.

Lily

Hey sweetie. Hope the surgery went well!

WOndering how you are doing today. I hope all is well. THinking and praying for you.

Shannon:)

hope all is good best wishes

Hope you are doing well after your surgery. Get rest and let us know how you are when you are feeling better. All of our prayers are with you for a speedy recovery.

DeeDee

Good luck! Rootin' for you!

Hope all went well for you, and thinking about how your recovery is going.
Benny.

Hello everyone!
I am back home lounging on my couch with my cats and my laptop. Your support is amazing. I can't even articulate how much this site has come to mean to me. Yesterday morning my count was up to 101,000! That's almost unimaginable to me. I am keeping a "watching and waiting" kind of attitude at this point. Right now is soooooo good though. I'm so happy I decided to do this. I have 2 weeks + to recuperate. Life is such an adventure.

Hello tlmons!!
I'm so glad you're back home and doing well! And, it's great news to hear your platelets are up. Take care of yourself and get lots of rest. Wishing you a speedy recovery and high platelets:)
DeeDee

Great news! I hope your counts continue to stay up!

Hello Timons,
Pleased to hear your home and doing well. Also encouraging to learn your platelets are up and you think the operation was worthwhile. I bet the cat is pleased to see you home too. Wishing you all the best during your recovery. Benny.

Hey Timons, how quick was that, home already. I hope you have a speedy recovery and those platelet number continue to go up. Good to see you are happy with your decision.

Look after yourself and have a big relax while you can, do the good stuff, watch movies, read and cuddle your cat.
Stay in touch.

Well, my platelets were up to 352,000 yesterday! My heme said that he expects them to climb for a while. He said that if they get too high I could actually have a problem clotting! If they get up to 1,000,000 (!) (HOLY COW!) he will give me meds to bring them down. Has anyone ever heard of this? He also said that the medicine (he didn't give me its name) could also possibly cause cancer. Don't think so. Not for me. I am doing very well and looking forward to going back to work next Friday. Getting a little stir-crazy. :blink: thanks for the healing thoughts, wishes and prayers! oh and Milly! You'll be happy to know that I have read 3 books, watched way too many movies and relaxed in the sun lots. (its still pretty cool here).

Timons:

I'm glad you're still doing great! Let's hope your counts stay right there!

Yes, clotting is a risk after splenectomy. Even if counts do not get too high, clots can still occur as splenectomy can raise the risk of thrombosis. It is rare though, and most people do not have a problem. It is good to be aware of this so you know what to watch for.

"People who have had a splenectomy have more microparticles in their blood, giving them an increased risk of dementia and heart attacks from blood clots. They are also more prone to blood vessel complications."

www.pdsa.org/treatments/conventional/splenectomy.html

I have not heard of a drug that lowers platelets (on purpose), but I have heard of drugs such as coumadin or heparin that thin the blood. I am not aware that they cause cancer.

Hi Sandi,
He actually meant that if they got really high I would have a problem not clotting. I guess something happens when platelets are very concentrated and they don't clot???? Have you heard of this?

Yes, I've heard of it. When platelets are too high, a person can either clot, or lose the ability to clot.

Hey tlmons, how did you go back at work? I hope you are going ok.