My husband was diagosed in 2005 with inherited hemachromatosis and polycythemia vera. At that time the dr told us that it went hand in hand together. He was going everyday, then once a week then once a month and then every 3 months then one day the doctor said if you get sick go to your g.p. It was like she dropped us. At my nagging he finally went back to the oncologist and he does have hemachromatosis which were were not concerned about the polycythemia until now I have found this horrible article on the the internet and I am freaking out. Badly. I do not want anyone else to freak out…http://www.aafp.org/afp/20040501/2139.html
After reading some of the postings on here this article has some false information in it I pray. The median age really is not 10 years is it? It can’t be. My husband does not seem to care and thinks if he avoids the issue he will be fine. So does that mean without treatment which he is doing it does not look good. Sometimes I really do not like technology. I need help. I need insight. I need someone to tell me it is going to be ok. I am scared to talk with him about this until I know all the facts because he is the person that will read all the symptoms on a drug information sheet and have every symptom every time. I sorry I rambled, and if I scared anyone. I just don’t have anywhere to turn and no one to go to. The doctor still has not called or emailed me back and all the oncologist and hematologist here in Austin seem to work for the same company. I want a second opinion. How do they know for a fact that it is polycythemia vera. Is any research happening on this to help us?
I finally got to talk to a social worker at the clinic today and she helped me a lot. The nurse is going to call and make him an appointment with another doctor. See how this goes. She hooked me up with someone that is part of a support group. More later. Pray for us.
go to mpd.org for more info and lots of support through group
On Dec 1, 2007 12:53 AM, angelatx <
polycythemia-vera-cpt6970@lists.careplace.com> wrote:
hello there, I have a wonderful Dr. he is Dr.Steven Kalter here in San Antonio at the CTRC and has a wonderful staff, i am sure if you can make the drive it would be worth the drive, I have been with him for a year and a half, I only have the P.V. but he is very helpful. I will be seeing him this thursday and will see his nurse and ask about your husbands condition. sometimes the web can give you too much information so i don’t look and i have not opened the article that you gave me. I also exercise 3-5 a week and stay very well hydrated and take good supplements as well as 2 baby aispiris a day. Stay strong and find another Dr. Hand in there, Judy.
angelatx polycythemia-vera-cpt6970@lists.careplace.com wrote:
I am at a loss now. My husband basically just refuses to go see a doctor and I do not know where to turn or what to do. I have been calling his dr’s office since Friday and no one has called me back. I can’t find any doctor’s in Austin not affialted(sp) with this center. He has a 3 year old daughter that loves him and a sister that devotes on him. I am trying to be strong for them. I just can’t understand why he is such a stubburn *****. I get so angry because of this. I need help. He has had a small hard spot come up on his foot and it is turning red and the only thing I know to do is knock him out and force him to go.
So sorry to hear of this. Maybe his family could intervene, clergy? PV
folks are at a high risk for circulation problems–his foot as well as
suffering a stroke. If he won’t go, the stress is not helping you and
maybe you should obtain professional counseling to help you cope. Again
sorry
-----Original Message-----
From: angelatx [mailto:polycythemia-vera-cpt6970@lists.careplace.com]
Sent: Thursday, December 06, 2007 10:44 AM
To: Blaum, Steven (CMS/NC)
Subject: Re: [polycythemia-vera] the scare net
Angelatx, hope it all works for you. Sometimes we all have to reaach out for help
Sent from my BlackBerry Wireless Device
-----Original Message-----
From: angelatx polycythemia-vera-cpt6970@lists.careplace.com
To: Blaum, Steven (CMS/NC)
Sent: Thu Dec 06 16:42:45 2007
Subject: Re: [polycythemia-vera] the scare net
So on Thursday I finally got to talk with a social worker and she was really helpful. She told me she was going to talk to the nurse and since my husbands dr is on maternity leave she would get the nurse to make an appointment with another doctor there and mayben then my husband would go. Well the nurse calls back, my husband and I get into an argument because he know I called and he does not want to go. I finally got him to break down and agree to go. Well we get there on Friday and they just take blood. This is it. What happened to the doctor and since I am doing some of this without his knowledge I cannot just demand to see the person that runs this place. I am furious. We talked to the “head nurse” that thinks she knows everything. I tell her about the new discoveries in the gene research and she looks at me like I am a nut case. Tells my husband she does not know what I am reading, but polycythemia vera is not a big deal, not potentially life threatening and tells us they get all their information off of CDC.GOV. If a lot of doctors out there do just go to that website to get their current information and treatment then it needs to be put a stop to. This if freaking outragious. Now what do I do? I will wait until Monday and talk to the social worker again and see from there. I am simply at a loss here. I will keep fighting and loving my husband. He is my world.
Well after tons of research I found a doctor finally here in Austin that does research on MPD’s. His old dr’s nurse finally called me back saying for the last two weeks she has not gotten any messages. I told her frankly that I am done with that office and found a new dr and had set up an appointment with him. Dr. Rene Castillo is awesome. We had our first appointment with him on Friday. He really sat down and talked with us. After looking over my husbands records he does not even think my husband has polycythemia of any kind. Monday they are going to draw and send off to test for the JAK2 mutation. He will see us everytime we go to the office. Dr. Dina Tebcherany his old dr we have only seen her maybe 3 times in the last 2 years. We just normaly see a phlebotomist and that is it. This would be great if this dr is correct. It will take 2 weeks to get the result. Please everyone pray for us. Thank you for all of your support.
A doctor has advised me to be wary of anything on the internet. He said he can be filled with misinformation.
Yes, these forums especially can be the wrong place for advice, but try the Mayo Clinic or the New England Journal of Medicine, or just type in Polycythemia Rubra Vera on your search engine and look for yourself. I have found that doctors can give bad advice as well or little or none. NEVER stop your search for the right Doctor, find the best one you can, get another opinion thats what I did. By the way, how is it your husband has both Polycythemia and Hemachromatosis. Hemachromatosis is associated with to much iron in the blood. Polycythemia is when you have to many red blood cells, or like me, all three are up Platelets, red and white cells.
Hi my mom was told she had polycthemia vera about 19 years ago. She was told then that her life expectancy was abut 10 yrs. she used to have to have blood taken out now she has too little she was in the hospital and they gave her platetets and blood but it didn’t help much. right now she takes the hydra on and off depends on her blood count. Her spleen is so big she looks preg. she has lost a lot of weight .
doctors said there is nothing else they can do and they will not give her any more blood or platelets. she has had a nose bleed she stays sick &vomiting because her speen is so big. She has lived longer than they expected so this shows they do not know. Not many doctors know much about this disease. I have just now found this website It is nice to talk to someone else who knows about this disease . Not many knows of this disease and they don’t understand why they can’t do anything else for her. You will be in my prayers and I will Pray for the best for your husband.
tammy48
hI! hOW OLD IS YOUR MOTHER?
I have PVC since I was 14, I am 45 still on flebotomy. Sometimes I scared> To: robinson_env@hotmail.com> From: polycythemia-vera-cpt6970@lists.careplace.com> Subject: Re: [polycythemia-vera] the scare net> Date: Thu, 27 Dec 2007 19:28:23 -0500> >
update: We found a new doctor and with A LOT of persuading my husband went and loves his new doctor. He really is knowledgeable and takes time out to talk to you. We had the JAK2 genetic test done. We are negative. Thank you everyone for all the information and really wonderful support. He did have polycythemia which is too many red blood cells and the dr believes it was due to his smoking. He has quit and his red blood cell count is normal now. I can not say thank you enough to all of you.
what is JAK2?> To: robinson_env@hotmail.com> From: polycythemia-vera-cpt6970@lists.careplace.com> Subject: Re: [polycythemia-vera] the scare net> Date: Sun, 13 Jan 2008 12:38:50 -0500> >
From my understanding, JAK2 is a genetic test that determine if you have the gene that is linked to PV. My husband and his mother both have the gene (although we were told that it didn’t run in families originally). Since my husband’s diagnosis, his sister was tested (negative) and we have encouraged his other two brothers to be tested. Our pediatrician is planning on testing our children at some point as well. It would be better to know and be on the lookout than not to know and find out too late.
We found my husband’s PV on a fluke–just the right doctor asked just the right question and ran the right tests. He had not even mentioned his mom’s condition b/c he didn’t think it was important. So far, he has been managing with plebotomies every few months once they got it under control. Initially, he went 2-3 times a week to get his numbers down. When he was diagnosed his Hematocrit was 90 but now days he has been able to keep it between 45-50 with medical intervention. His mom is on a couple of medicines to help ward off blood clots but he hasn’t had to go that route yet.
There is more information about the JAK2 gene on the Lymphoma/Leukemia association site.
-------------- Original message from minoso polycythemia-vera-cpt6970@lists.careplace.com: --------------
Thanks for replied, I 've been on phlebotomies since 1978. Never got my hematocrit so heigh, It usually around 45. If for any reason It goes beyond 45 I can not support the headache, dizzines.
I will pray for your husband feel OK> To: robinson_env@hotmail.com> From: polycythemia-vera-cpt6970@lists.careplace.com> Subject: Re: [polycythemia-vera] the scare net> Date: Wed, 16 Jan 2008 14:10:45 -0500> >