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Old 03-09-2004, 08:40 PM   #1
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annabella44 HB User
Question Phlebotomies

Hi Y'all! How are things? I know I haven't posted lately, but I need to ask y'all a question since y'all know more about polycythemia than I do. As I've said before my dad, now 41 yrs young, was diagnosed almost 4 years ago. To make a LONG hard story short when he went to the hematologist yesterday mom was told that we need to start takin' Daddy for phlebotomies once a week now. Has anyone else heared of this? I'm pretty sure its a bad sign but I was wonderin' if anyone else has heard or knows anything about the phlebotomies being so close together. Any help would be HUGELY appreciated. Y'all and your families are in my prayers daily.

 
Old 03-14-2004, 12:18 PM   #2
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NASCARfan HB User
Re: Phlebotomies

Quote:
Originally Posted by annabella44
Hi Y'all! How are things? I know I haven't posted lately, but I need to ask y'all a question since y'all know more about polycythemia than I do. As I've said before my dad, now 41 yrs young, was diagnosed almost 4 years ago. To make a LONG hard story short when he went to the hematologist yesterday mom was told that we need to start takin' Daddy for phlebotomies once a week now. Has anyone else heared of this? I'm pretty sure its a bad sign but I was wonderin' if anyone else has heard or knows anything about the phlebotomies being so close together. Any help would be HUGELY appreciated. Y'all and your families are in my prayers daily.
Hi there. I have Polycythemia, 1 year now and I just finished a batch of phlebotomies. 1 every 3 weeks for 4 visits. I went to Dr yesterday and my white & red are normal, but the platelets are sill high. How many treatments do they want to send your dad for? His bone marrow must be producing fast blood if they want him to go every week. Is he on any medication to slow the bone marrow down? If his bone marrow is producing too much blood for the body then taking it out is ok if he has too much, but ask the Dr how many visits. My platlets were 709 in January and now they went down to 604 and Dr has to clue why. she says it is something with this illness and they do up and down all the time.. Great Keep me posted how everything is going with your dad.
Thx
Cheryl

 
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Old 03-15-2004, 06:47 PM   #3
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Re: Phlebotomies

Hi there. Yes I have heard of having phlybots like that. When I started I had to go once a week. But after about 6 weeks of that I am now at every two months and I am hoping to stretch that out.
I know this is very scary. There is not a day that goes by that I dont think of this disease. But the key is to get the blood levels under control and keep them under control. So far just having the blood taken off is doing that for me.
I have know about this for alittle less than a year now. Just be informed and ask questions.Most of all hang in there, God can do some very wonderful things.
Hugs and prayers. Jammin Mama

 
Old 03-16-2004, 05:21 PM   #4
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annabella44 HB User
Re: Phlebotomies

Hey y'all thanks for the replies! Dad isn't on any meds right now except for pain. As of right now he's schedualed to go once a week every week thru May. Thats if we can convince him to keep going. They took a pint last week and one this week. This is the first time he's went 2 weeks in a row and i'm scared y'all. He's tired of being a human pin cushion. Ok, enough of my ranting and raving, how are y'all? looking forward to spring?

 
Old 03-17-2004, 07:58 PM   #5
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Re: Phlebotomies

Hi everyone. I go for another phlebotomy tomorrow, and then I go for a 2nd opinion in April. Does another have any of the symptoms they say come with Polycythemia? I would just like to be sure about this, that's why the 2nd. My platelets have dropped and the Dr has no clue why. She told me to keep taking the medication (Hydrea) she put me on because it is slowing down the bone marrow just like she wanted it to do, and when I told her I wasn't on any medication yet , she checked the file and sure enough, no medication. so she didn't have an answer after that. I am in Canada, and our medical is the sh---. You wait 3 hours to get in with an appointment and you are out of the office in 5-10 min. They have no time for you. I wish they would privatize the medical system so we could have the option to pay for medical help. So a 2nd opinion is good. Maybe luck out and get a better Dr that will run some test, because this Dr sure hasn't. One sign is an enlarged spleen, and I have been for 2 ultrasounds and the spleen is normal size?????? I am only 36 and am pretty freaked about this. Think about it every day. I wonder how can I live the rest of my life always thinking about this and what can happen. This is so new, the Dr's don't know much about it. Very confusing
Talk to everyone soon

 
Old 04-07-2004, 12:56 PM   #6
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Smile Re: Phlebotomies

Hi Annebella

My husband is 44 yrs.OLD ha ha. He has just been diagnosed earlier this year.
Jan,04 he goes to our local hospital every other week for phlebotomy.
His ferritin level was in the 800 range, since these blood depletions, his level has lowered to the 400 level, he will go next week again, and that might be it except for every 56 days at a local blood clinic.
Your dad should read up on this condition and be aware of all symptoms that can come with this condition. My hubby also 2 weeks ago has nodules on his thyroid so he will have a radioactive scan done on it tomorrow, and then a biopsy to look for the worst.
Good Luck

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Old 04-08-2004, 01:07 PM   #7
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annabella44 HB User
Re: Phlebotomies

Hello ODRAZ, sorry to hear of your husbands diagnosis. We've encountered a new bump along our road with my dad. He went back to the doc yesterday and even thought he was at a 52 but the doctor wouldn't phlebotomize(?) him this week because he is now having severe abdominal pain. My mother and I have read up on his condition and I have even corresponded with doctors in the US and abroad about his condition, even though what we've read has been bleak, your right it is best to know what to expect, but its hard to find what to expect with this particular cancer. Dad hasn't read up on it because not only has he been in denial but due to several strokes caused by the PV he isn't cognitively capapble of comprehending what he was reading so for his sake we just sort of go with it. Keep us posted on how your husband is doing and know that your in our prayers. P.S. My mother would like to know what you have found about the progression of this illness, maybe you've found something that we haven't or vice versa, i'm always ready to help if you need an ear to listen or shoulder to cry on, thats what we're here for. To everyone else who posts here, Y'all are the greatest!!!!

 
Old 04-20-2004, 01:19 PM   #8
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ODRAZ HB User
Thumbs up Re: Phlebotomies

Hi Annabella

So sorry to hear of your father, I know it is very rough I lost my father when he
was 47, due to emphesyma, he just couldn't stop smoking. That was 17 years ago now, what a long time. Best of luck in getting answers abroad, where do you live? I am in Ontario. I must make something clear my husband Gary does not have the same condition as your father. Gary gets phlebotomies every 2 weeks because he has a very high iron level. He has a disease or condition called Hemachromatosis, its when your body stores too much iron and the body cannot rid itself of it, too much iron can cause heart attack, diabetes, thryroid disease, liver cancer, etc. We just found out that he has nodules on his thyroid so he has had a radioactive thyroid scan done, and is waiting to see another specialist.
What is the outlook of your fathers condition? Give my regards to your mother.
Nicole
Ontario

 
Old 04-20-2004, 11:07 PM   #9
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annabella44 HB User
Re: Phlebotomies

Nicole, I'll give your regards to my mother. My Dad's prognosis is well, he's dieing. They can't tell us when or even exactly what will cause it<heart attack, stroke> they just dont know. I hope your husbands scan comes back clean, you will both be in my prayers

 
Old 04-23-2004, 09:00 AM   #10
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ODRAZ HB User
Smile Re: Phlebotomies

Annabella

Thanks for your thoughtfullness, its great to know there is positive caring humans still out there. Wishing you the best of luck with your father, and wishing him no pain. Good Luck!!

 
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