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Top 10 Search Results for "putting yourself first"

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Do You Know Your Limit
A MyHemophiliaTeam Member asked a question 💭

Do you ever push yourself through a bleeding episode without infusing I do and it's actually not that bad once the bleeding has calmed down and gone away I hate needles is there any advise for this

A MyHemophiliaTeam Member

I would strongly discourage trying to push through a bleed and not infuse. Especially if it is in any major joint. You will definitely pay for it when you get older and you develop severe arthritis… read more

Do Any Of You Lovely People Suffer From Fatigue?
A MyHemophiliaTeam Member asked a question 💭
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A MyHemophiliaTeam Member

Yes, I’m severe fXI and my fatigue is a daily thing but it’s made worse from the cold. Best thing is to take more time for yourself and caffeine aha

Has Anyone Encountered A Surgeon Who Is Not Concerned With The Deficiency
A MyHemophiliaTeam Member asked a question 💭
A MyHemophiliaTeam Member

Thank you for sharing...I decided that day that this team would not be cutting on me...we have moved the surgery to a much bigger metropolis....they are only doctors..and I agree they feel above us… read more

Blood Types?
A MyHemophiliaTeam Member asked a question 💭

I am curious, my husband has O negative blood and his friend also has negative blood. These are the only 2 hemophiliacs I know. I was wondering if there is a correlation with negative blood and hemophilia? Also, my husband has a MTHFR mutation, which makes his body less able to detox, among other things. I do not know about his friend’s status on this, but we found out through 23&me and genetic genie. Does anyone else know their status as far as blood type and/or MTHFR mutation, specifically 677… read more

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A MyHemophiliaTeam Member

Interesting question but I don't believe there is any connection between RH factor and hereditary bleeding disorders. Like you, I am O-neg. but that only means we are universal blood donors (like… read more

Health Insurance
A MyHemophiliaTeam Member asked a question 💭

I live in Michigan, and we have Childrens Special Health, that covers hospitalizations, factor, and supplies, with no cap.
I'm looking to moving somewhere possibly warmer in the future, and I'm curious about coverage in other states. I'm a very special, and severe case, and want to be sure I'll get the coverage that would keep me healthy.
If you care to share, that would be amazing.

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A MyHemophiliaTeam Member

I don't have hep-c but know of some people that does or did. They now have treatment for it.

Elbow Pain - Older Haemophiliacs
A MyHemophiliaTeam Member asked a question 💭

Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?

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A MyHemophiliaTeam Member

I have pins and needles in my small finger as well as the next. Xrays shows that I have a nerve caught in the elbow joint. Got used to it after an few years. Now I have Carpal tunnel syndrome as well.

When Surgery Is Needed , How Do You Get Oncologists/hematologists To Work With Surgeons To Arrange Surgery, Infusions, And Observation?
A MyHemophiliaTeam Member asked a question 💭

I posted an in detail story about what’s happening, but in short. I need multiple surgeries and I am constantly being canceled by the oncologist for numerous reasons (not financial) for some ridiculous reasons such as dates, locations, etc. no referrals or rescheduling, no nothing, just cancels the surgery and surgeons eventually get annoyed and back out leaving me scavenging for other surgeons. Which most once they hear hemophilia refuse to do the surgery because apparently this is a common… read more

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A MyHemophiliaTeam Member

I use to have the same situation. Now I have them contact my hemotologist to set up a treatment plan together. Since I started this method. I haven't been rescheduled, denied, postponed, etc

Joint Bleeds
A MyHemophiliaTeam Member asked a question 💭

I have von Willebrands disease. I really don’t know much about it. I was told its a relatively minor case but that’sall i know. I don’t know what to expect with this disease and have a lot of body pain and headaches. I’m not sure if any of this is from vwd or if it’smy other conditions.

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A MyHemophiliaTeam Member

I have VWD and have always been told it’s a Factor VIII deficiency.

Has Any One Had A Second Knee Replacement Done? What Was The Life Span Of Your First One?
A MyHemophiliaTeam Member asked a question 💭
A MyHemophiliaTeam Member

I posted on this forum that I had both knees replaced. The first one 20 years ago and the second one 5years ago. It was the second one that developed problems. The lower section worked loose. Was… read more

Does Anyone With Type 1 VWD Wear A Medical Alert Bracelet?
A MyHemophiliaTeam Member asked a question 💭
A MyHemophiliaTeam Member

I make custom ones, if anyone is interested...let me know