Thrombocythemia

Maura,

that stinks...I hate insurance coverage! I saw an editorial cartoon recently that had something about the only people who have problems paying for their medical issues are those who have insurance...

Then they put in those restrictive dates. My daughter didn't realize the importance of them on her previous job and was without any insurance at all because she didn't read the papers and no one told her that she had two days to sign up because of the transfer periods.

My nephew didn't realize the importance of keeping up a certian number of hours at work and due to the fact that he will be 19 and doesn't go to college full time he will now have the choice of paying $400 a month for his prescriptions or not take them. His mother is hoping she'll be able to pay Cobra for him. His "transfer" period is this month and if he doesn't have the hours - he won't be able to sign up until next year.

I'm lucky enough that we have GHI - lucky to only be paying something like $200 a month for the full catastrophic with the added ability to have $20 co pays every time you see the doctor.

I am thankful that the hydrea is covered, though. I don't know if it is fiinally working - but I'm guessing it is - because I had a really pretty good week-end. Probably, other than that one day in April the most energy I've had in months...was able to get things done and still feel like doing things.

Sorry for going off on a rant!
I wish you wisdom and luck when making your decision!

I answered you 2 days ago and it is still not printed. Thank you for your concern.
I have emailed all my tests to MD Anderson and I am waiting to hear from somebody. Tomorrow is the cut off date for me to change. I left a message this morning but no one has called yet.
Yes Insurance is tough nowadays. Did you know the only cure for ET is a bone marrow transplant but the cut off age is either 55 or 60 and it is VERY expensive. I read that on the internet. Sucks. I was awake most of the night with the burning in my legs and also they seemed like they were ready to burst even though I am not overweight. I bought a goosedown mattress cover..hope that is not making it worse. I also bought a 4" memory cover for the mattress but nothing seems to matter.
Sasha how are you. I am glad all of you are feeling somewhat better. Hope it stays that way. I do notice I get sleepy easily and then wake up with the legs. Does that sound familiar Genessa?
Bye for now

Mary

As you know, blood clots are one of the greatest dangers with ET. The burning in the legs is very similar to the neuropathy that people with diabetes get, due to impaired circulation of the furthest blood vessels from the heart.

If you look up Diabetic Neuropathy, you will get a better understanding of the physiology of it and ways to alleviate the symptoms.

The main things to remember are that you don't want to keep your knees bent while sleeping and you don't want anything under your calves that puts pressure on the blood vessels (both slow your circulation even more - and could even block blood flow). Elevating your legs sometimes helps, but only with a pillow or prop of some kind under the ankles/heels, unless you are able to keep moving your legs around, which disturbs your sleep anyway.

I was sitting on a stool at our kitchen counter the other day and forgot to move my legs. When I stood up, my feet were both dusky and a deep blackish-purple color. I almost screamed! It went away after a few minutes of walking around, though.

The cure for ET is a bone marrow transplant? Wow! People have been asking me if that's what I need and I wasn't sure, so I've just been telling them, "As a last resort". Quite a disease we've gotten!!

I am very thankful for my husband's insurance and his flex plan. If I'm able to get on SSDI, I'll be eligible for Medicare after 2 years. Even with insurance, my co-pay for my medications is $155.00 per month. When I think of the other things I could be doing with that money.....

But I shouldn't complain. Other people have things so much worse! I'll take what's given to me and deal with it, I guess. I'm starting to get a little more energy back and I'm much less dizzy. I spent Wednesday night sitting up with nausea and acid reflux that was horrible! Zantac didn't bring any relief at all. It's settling down now. I know I need to eat better, but I have no appetite. Heartburn and acid reflux are listed as symptoms of ET, but I think the multiple vitamin and aspirin aren't doing my stomach any favors, either.

I think the chemo is all out of my system by now. I hope my count isn't too high when I go next month, because I'm seriously thinking about taking my chances without Hydrea. Such decisions.

Keep the faith that better days are coming!

First off me name is Maura in Gaelic or Mary in English which I only started to use in USA.
Well MD Anderson called and said they have accepted me after I faxed them all my tests. They wanted me today but I have to change my Insurance to Medicare first. They might only offer me Hydrea but I will go with all kind of questions for them to answer.So I probably will be seeing someone there around the First of the month..I will make my appt. on Monday as soon as I know when I will be back to Medicare. Good new and bad as they can see from all my tests that it defititely ET.
Sasha thank you for all your advice..I appreciate it. Nice to have a nurse on board, sorry it has to be you though. I am patiently waiting for the Doctors office to call me with the new count. I was hoping it would be today.
Happy Mothers Day to you all

Maura

Hi all - I can't believe all that has been going on since our computer crashed! I missed you! I just read all your posts and want to catch up. Sasha how are you feeling now that you are off Hydrea? Are you still tired? Do you have any other side effects now? Do you feel better? I sure wish I could take a break from it. Maura, I am so excited that you got into MDA - they are the best in the world. I am hoping that you will get good answers for all your questions and pass on what you learn to us. I don't have much faith in my doctor's knowledge or ability as he has never answered my questions about his experience with ET.
Our computer "crashed" and we spent a week or two trying to fix it and found out it was actually cheaper to just buy a new one that is faster and better anyway. My brother-in-law helped us get it all together. Then my sister came for a quick visit - she lives in Mexico so it really uplifted my spirits. It was amazing what energy I had. I was thinking that maybe I've been depressed because I just was diagnosed at the end of February and all. It sure is possible. I am just too young to deal with this dis-ease!! Anyway I think that my energy levels just go up and down all the time now. Some days are good and others aren't. Its a big adjustment. It sure helps, though, to be able to share ideas and information with all of you. I would really feel lost with out you!!
I want to put my two cents in about faith healers - I really believe that the mind helps/hinders us in our life. Faith is all we have and if ET isn't a test of our faith, then what is???
We have a family friend who had a bone marrow transplant for leukemia. Now, 4 years later, he has problems with cataracts and COPA which is a degenerative lung disease that eventually he'll have to be on oxygen. So it may "cure" ET but the long term effect on your body may be worse. Although the MDA website and the City of Hope website both say there are no age limits on bone marrow transplants, my doctor told me I'm not eligible because of my age.
One thing about SSI disability - you just have to keep filing appeals. I took their training when I worked for the state of Arizona (long story)and they have a huge book of occupations and they tell their claims analysts to find something in there for everyone. Might be worm farmer or something equally as ridiculous. So hang in there and keep appealing. They deny everything to start with and over 1/2 don't appeal. Once they OK it, they back date it to your original file date anyway.
OK, sorry this is so long. I wish we had our own board for just ET stuff because I had a hard time finding this thread when we finally got back online. All my bookmarks were lost!
take care my friends
Barbara

I don't wake up with the legs so much as noticing them when I first lay down and if I am sitting quietly - like right now I can feel it. It doesn't really interrupt my sleep, though. I have always been very sensitive to touch - can't eat peaches unless someone else peels them, can't eat grapes unless they are in a bowl of water, can't sleep if my feet are covered. The last few years I have been using a flannel sheet - much laundered so very, very soft, as my blanket - winter or summer.

I hope you got a response in time - didn't read the rest of the messages to see if you posted one.

I had no idea there was any kind of a cure for ET. Not that bone marrow transplant seems viable. Even though for the most part I have been feeling better, I have been depressing myself thinking I have this for the rest of my life.

I try to keep tellng myself what you seem to be telling yourself - about not complaining because others have it worse. I am so happy that the hydra doesn't seem to be giving me any side effects and I have been getting my energy back - but not for two days in a row! However, I have little to no nausea (sp???) and feel like such a whine baby moaning about the problems I do have.

Hi Maura,

Having grown up with a few Maura's and Maureen's around, I guess I kind of always knew what Maura meant. It is a beautiful name.

I am happy that MD Anderson responded to you in time for you to change your coverage.
I just received my first "mail-order" package of hydra and go back to the hemotologist on Tuesday. I'm very curious what my numbers will be.

Hi! I'm Genessa, or Agnes (my "real" name, but I still haven't grown into it - and I'm way past the age I should have). I read all the posts in this thread when I first found the link - I don't even remember where. I tried to find it one day when my favorites was gone and couldn't!

I was diagnosed a couple of years ago, but was asymptomatic. When my internist told me to go back to the hemotologist after about a 6 month break, I didn't make an appointment. Then I had a series of illnesses and the loss of a very dear friend under very traumatic circumstances. Well, long story short, I was ready to ask dr for recommendation for a psychologist or psychiatrist because I thought I was on my way to being clinically depressed. Completely, physically and mentally wiped out. No enthusiasm for anything - just plodding along. DH had made me an appt with my internist (I don't know why - and made me go an get blood work done the week ahead of time) and my platelet count had gone from 600's to 900's in 3 months or so. She put me on hydra and I made an appt with hemo right away. Since being on hydra, I am finally regaining some of my energy and enthusiasm. Some good days, some half good days, no completely bad days, anyway. I go back to hemo on Tuesday and I was hoping he'd cut hydra in half, but don't think so, yet.
I am truly grateful for finding this board, though. Best thoughts to everyone!

Hi! How many mg of Hydrea are you taking? I'm on 500mg and the only side effect I have is fatigue. I guess I'm lucky I don't have burning legs. When I read about how you describe them, I'm glad I don't have to deal with them. I can relate to being physically/mentally wiped out though. I think its really important to keep a positive outlook. Aren't you glad your DH made you that appt? At least he is taking care of you!! I have to say that I am so impressed that you go walking with him still. There is no way that I could do that - I would be totally wiped out.
Anyway, be sure to let us know what your hemo says on Tues.
take care
Barbara