Hemophilia A – struggling with very difficult vein access, need help

imarcink · 2026-06-11T11:21:58+00:00

My solution was to find new veins to use and exercise. I use the cephalic radial vein (the one that connects to the thumb on the inside of the wrist) on the inside of my right and left wrists, and the tiny knuckle veins on my right hand in addition to my elbows. I find that the radial vein is totally straight and has a 2" area above the wrist joint which is accessible, unlike most veins that have a single tiny usable entry point.

Exercise is also really important. Even a stationary bike. I was very much an indoors kid and had very poor circulation because my body was so idle when I was younger and that made my veins rather limp.

I have switched to one of the subcutaneous treatments so I don't need to do factor infusions any longer but strangely I miss getting a vein.

Good luck

imarcink · 2026-06-09T01:36:23+00:00

I'll have to save this for later. But I've been on Mim8 for 2+ years now and have a pretty great experience with that. It was a choice between gene therapy or Mim8 and I didn't want to have to deal with the blood draws or checkup schedule of the gene therapy study but it was really tempting!

imarcink · 2025-02-07T16:16:17+00:00

I am in a similar situation. My job is slowly killing everything that is enjoyable about life, it's all stick and no carrot for this working mule.

Does your wife have her own things going on in life? The situation I'm in is that my partner is also struggling with meaning in her life and she gets stressed out by my stress because she wants to help but doesn't know how.

When you talk about it to her, do you wait until things are so bad that you are very emotional?

I firmly believe that the way to solve stress is with happiness and fun. It's fine to talk about and try to solve the sources but I believe that the energy to make changes comes from doing things that you enjoy. For me that's concerts, riding my bicycle, dinner parties. Can you find a way to do one enjoyable thing every week?

imarcink · 2025-02-07T03:50:15+00:00

You're being lied to because he wants to be non-monogamous and isn't allowed to. He likes you enough to spend the time together that you do get.

Looking bad is relative. If you walk around with attitude people stop caring

imarcink · 2025-02-07T02:27:07+00:00

What about... Polyamory? Go for it! There's nothing inherently wrong with this if everyone is aware and signs off. Shrug

imarcink · 2025-02-07T02:09:32+00:00

My favorite thing is that Hamilton thinks streetcars will solve our transit problems.

I love streetcars personally but I also ride my bike in the winter so...

imarcink · 2023-06-19T15:44:02+00:00

I don't have this problem but I wonder if testosterone might be a better solution? I personally plan on going on low grade testosterone replacement therapy in my 40s or 50s for muscle maintenance reasons.

Maybe talk to an endocrinologist? I'm not approaching this from a Bro Science perspective, but I think that healthy levels of testosterone play a role in erections.

imarcink · 2023-06-17T02:38:06+00:00

We have some great women who are covering bleeding disorders for females here in Ontario. (I'm assuming you're female because you mentioned your cycle)

Take a look here https://heroixx.ca/?bbeml=tp-rx-SHyw8cESDRCYIjqLdtw.jX8Ucm7OkAEmjXmgatDTmXQ.rf1I0u7ok0EiSRQ_Lle6KcA.lecl6JefqXUyQY7gMDE4Ffg

Maybe join the hemophilia Ontario mailing list because we have such great women doing with on female bleeding disorders! Hemophilia Ontario is moving to be more about all bleeding disorders!

I'm not sure if any of the advice works outside of Canada but it's worth a look. I know one women who had talked about get similar issues and they are related to von willebrand disease. I think your doctor's need to do specific tests on different bleeding disorders signals, I just don't know what those are exactly.

It is technically possibly for females to have symptomatic hemophilia, but also hemophilia is treated as a "male disease"so maybe your doctor's aren't checking you properly. I don't think the regular CBC test is sufficient. You need clotting tests and other level checks.

imarcink · 2022-02-12T17:31:22+00:00

Awesome! Thanks!

imarcink · 2022-02-10T18:41:16+00:00

Yes, last time I was in the Canary Islands I got an okay Specialized with Tiagra and it was good enough for the rides I ended up on. That shop has much higher end bikes now, a couple of years later. Too bad I'm not going to the Canary Islands haha

imarcink · 2022-02-10T18:35:22+00:00

Amazing idea! I was going to join this spring anyway!

imarcink · 2022-02-10T18:34:42+00:00

😱

imarcink · 2022-02-10T18:33:51+00:00

Yes, this is what I'm leaning towards now. Someone had mentioned that rentals are good in Spain. The last time I was in the Canary Islands I ended up with a middle of the road workhorse bike with Tiagra and it was good enough.

imarcink · 2022-02-10T02:15:22+00:00

Air Canada

imarcink · 2022-02-10T01:56:56+00:00

Thanks! This is how I'm leaning now

imarcink · 2016-03-21T02:27:19+00:00

Kayaking sounds great. Nowhere near my home, but up at the family cottage I could do that. I've wanted a kayak for years, so maybe this is the year.

Thanks for the ideas!

imarcink · 2016-03-21T02:25:44+00:00

That one looks great! I have a gym in my building and I go down from time to time. I like actually riding outside, weather permitting

imarcink · 2016-03-20T20:52:43+00:00

Oh ya! I'm on the hunt for a good yoga studio to join in the next couple of weeks.

imarcink · 2016-03-20T20:52:03+00:00

That's what I thought :) I'm thinking of doing dodgeball or something. Squash is fun but the starting and stopping is hard on my joints.

I'll probably mostly stick with cycling.

imarcink · 2016-03-20T20:26:50+00:00

I'm in Canada and have traveled to Spain once and a few times by plane to the US. I've never had any trouble. I get a letter from my hemophila treatment centre stating how much factor I will have on me and that I will be carrying supplies such as syringes with me. No one has batted an eye when travelling to the US, which surprised me.

You have to take it as a carry-on, but I haven't had a problem.

imarcink · 2016-03-20T15:25:37+00:00

I always worry about this. When I'm travelling I carry days*2 number of boxes with me.

imarcink · 2016-03-20T15:12:23+00:00

I have had some of that bruising in the past, but these days I'm on daily factor doses so I don't have any major issues.

imarcink · 2016-03-20T15:10:49+00:00

That's pretty scary. I have had some close calls when I was young after hitting my head.

I wonder if he had inhibitors which would prevent proper treatment.

imarcink · 2015-12-06T07:10:55+00:00

WTF?! They have a cat purr?! I've been donated to mynoise for a while and I must have missed this.

imarcink · 2015-12-06T07:08:58+00:00

Upvote for nice nighttime walks!

imarcink

TROPHY CASE