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Blood and Blood Vessel Message Board


Blood and Blood Vessel Board Index


Hello everyone, my name is Megan, I'm 22 and was diagnosed with PV this past December. I thought I would tell my story and hopefully some of you will be interested enough to read it through... I have been kind of lurking on here for a couple weeks and found that it is great to just hear from others who have this and their experiences and treatments etc. There is so little information, that is good reliable information to wade through in the beginning.

The way I got diagnosed is kind of a long story. Reason being that I'm so young I think. I have always had migranes, and dealt with them. Then in May 07 I had something different. Went into the hospital and the docs kept telling me, it is just a bad migrane. They did a blood test and found something abnormal with the clotting of my blood but for some reason didn't look into it further. I know that if they would have, I wouldn't have ended up having this stroke a year and a half later!

Anyways that was where the tests ended. I was living on Advil to get me through every single day for over a year and a half with no improvement in my headaches. It was awful but sadly something I accepted.

My husband and I happened to be working in Alberta for a few months at the end of last year and it was actually a fluke that we were in Medicine Hat the day I had to go to the hospital. They had seen the same symptoms as mine so quickly checked my blood and put me on Heparin. Later tests would show that I had a blood clot in my brain from that day (or a few days before), as well as an old one from when I had gone in to the hospital in May 07. So that is what had been sitting in my head for so long causing me so many problems. I still think if they had tested further we could have gotten a handle on this much earlier.

Anyways I ended up getting air lifted to Calgary but it was too late, as I had a full blown stroke the next night. I was lucky to have the doctors and resources there I needed, and partly because of my age I had mostly recovered by the time they released me Dec 30 (over 3 weeks later). While I was in there they did a bone marrow biopsy to find out exactly what I had, and also confirmed the JAK2 mutation.

I have mostly recovered from my stroke, besides some damage to my eyes, mostly the depth perception. So its really a blast to be in the passenger seat when my hubby is passing other cars like mad! That tends to freak me out but is slowly getting better as well. We moved back to Manitoba to be near family so I could recover better and have a 'home base'.

I am currently taking a nice big cocktail of meds to keep my blood counts down. It is the red blood cells as well as platelets and white cells that were elevated when I went in. I take 1000mg Hydrea, 1000mg Acetozolomide (for the pressure on my eyes from the two clots, will be stopping those soon), as well as 4-5mg Warfarin daily. I only had one phlebotomy done back in Dec, they decided that since it is all three couts elevated that for now the drugs are best. I don't have many side effects other than upset stomach from the pills, and from PV itself I get tingly fingers and toes constantly and had to really work to get back into shape for daily things like walking up stairs at first.

Now I am feeling nearly like my old self. Actually better in some ways, because I don't have the daily headaches I had for the whole year and a half after getting my first blood clot. I slowly started working out again and can now do an hour of cardio a couple times a week, and will be trying my first aerobics class soon - I am so excited about that, I used to do them 3-4 times a week! I plan on going back out West to hike a mountain in Banff next year. It gives me a good goal to look forward to and keep motivated when its a tired day. I also just took a part time/casual job at a daycare and start next week. I can't wait, it just seems like every little thing is a step towards getting better.

Tomorrow I go in to find out the MRI results at the 3- month mark from being diagnosed. We are all hoping the clots will be about half their size from Dec.

So if anyone was willing to read my whole story thus far, thank you! I know this disease is a journey, and I refuse to let it get the best of me. I would love to hear from anyone else who has this disease and would like to share!

femmedeviant
Megan
Thanks Megan for sharing your story. We are dealing with a PV cluster in NE Pennsylvania, U.S. We believe that health authorities need to expand its screening to include younger people like yourself. So thanks, your story helps us do so. It was wonderful to read about your recovery and reminds me of my own recovery from open heart surgery. Happy holidays to you. Hank

[QUOTE=femmedeviant;3928869]Hello everyone, my name is Megan, I'm 22 and was diagnosed with PV this past December. I thought I would tell my story and hopefully some of you will be interested enough to read it through... I have been kind of lurking on here for a couple weeks and found that it is great to just hear from others who have this and their experiences and treatments etc. There is so little information, that is good reliable information to wade through in the beginning.

The way I got diagnosed is kind of a long story. Reason being that I'm so young I think. I have always had migranes, and dealt with them. Then in May 07 I had something different. Went into the hospital and the docs kept telling me, it is just a bad migrane. They did a blood test and found something abnormal with the clotting of my blood but for some reason didn't look into it further. I know that if they would have, I wouldn't have ended up having this stroke a year and a half later!

Anyways that was where the tests ended. I was living on Advil to get me through every single day for over a year and a half with no improvement in my headaches. It was awful but sadly something I accepted.

My husband and I happened to be working in Alberta for a few months at the end of last year and it was actually a fluke that we were in Medicine Hat the day I had to go to the hospital. They had seen the same symptoms as mine so quickly checked my blood and put me on Heparin. Later tests would show that I had a blood clot in my brain from that day (or a few days before), as well as an old one from when I had gone in to the hospital in May 07. So that is what had been sitting in my head for so long causing me so many problems. I still think if they had tested further we could have gotten a handle on this much earlier.

Anyways I ended up getting air lifted to Calgary but it was too late, as I had a full blown stroke the next night. I was lucky to have the doctors and resources there I needed, and partly because of my age I had mostly recovered by the time they released me Dec 30 (over 3 weeks later). While I was in there they did a bone marrow biopsy to find out exactly what I had, and also confirmed the JAK2 mutation.

I have mostly recovered from my stroke, besides some damage to my eyes, mostly the depth perception. So its really a blast to be in the passenger seat when my hubby is passing other cars like mad! That tends to freak me out but is slowly getting better as well. We moved back to Manitoba to be near family so I could recover better and have a 'home base'.

I am currently taking a nice big cocktail of meds to keep my blood counts down. It is the red blood cells as well as platelets and white cells that were elevated when I went in. I take 1000mg Hydrea, 1000mg Acetozolomide (for the pressure on my eyes from the two clots, will be stopping those soon), as well as 4-5mg Warfarin daily. I only had one phlebotomy done back in Dec, they decided that since it is all three couts elevated that for now the drugs are best. I don't have many side effects other than upset stomach from the pills, and from PV itself I get tingly fingers and toes constantly and had to really work to get back into shape for daily things like walking up stairs at first.

Now I am feeling nearly like my old self. Actually better in some ways, because I don't have the daily headaches I had for the whole year and a half after getting my first blood clot. I slowly started working out again and can now do an hour of cardio a couple times a week, and will be trying my first aerobics class soon - I am so excited about that, I used to do them 3-4 times a week! I plan on going back out West to hike a mountain in Banff next year. It gives me a good goal to look forward to and keep motivated when its a tired day. I also just took a part time/casual job at a daycare and start next week. I can't wait, it just seems like every little thing is a step towards getting better.

Tomorrow I go in to find out the MRI results at the 3- month mark from being diagnosed. We are all hoping the clots will be about half their size from Dec.

So if anyone was willing to read my whole story thus far, thank you! I know this disease is a journey, and I refuse to let it get the best of me. I would love to hear from anyone else who has this disease and would like to share!

femmedeviant
Megan[/QUOTE]





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