Quantcast

Von Willebrand Disease (VWD) - Online Support Group

Where are my fellow Type 3 Severe folks at?

Hey all! :)

Just checking in to see how many Type 3 vWd's are on this site??? I love meeting other severe peeps and sharing our horror stories! :) Comment on this discussion if you are Type 3 <3

Thanks,

Stacy

Hi Stacy!

Good Morning! I am not bleeding today!!!! Just checked the porcelain facility and no need to do a hemocult test on the stool!!!! That' s eight weeks without a GI bleed from a arterio-venosal malformation in my GI tract. I am 74 years old and have acquired vWD from an immune system malfunction. Everytime my body makes a VWF molecule or Factor eight molecule my rogue antibodies destroy it. I have no large multimeres. They never have a chance to form so I have no factor eight as the VWF protects the factor eight proteins by wrapping around them. I have had this for several years now. There are about 500 people known to have acquired this mode of type III. I have worked with my local Hospital and several very good Hematologists so that my local Hospital Pharmacy actually stocks Alphanate just for

me. Apparently one supplier loans the Pharmacy a supply and they pay for it only as I need it. A wonderful arrangement as it avoids the wait time for it to be air-shipped from TN. Apparently I have AVMs throughout my system and I am just lucky that one in the brain hasn't popped yet. The GI ones have bled me out to Hgb of <7 twice in two years. The last time one Hematologist tried IVIG to knock down the antibodies. That worked as the antibodies were wrecking the Alphanate as fast as they could infuse it. In hereditary vWD type 3, that road may not work but it wouldn't hurt to ask about it. The IVIG superdose overwhelmed the immune system production of rogue antibodies and the normal antibodies were provided by the rest of the IVIG. Apparently IVIG works by convincing the immune system to take a vacation as the IG concentration in the blood serum is so high the bone marrow goes on holiday. It seems to have worked in my case.

The last time (May, 2014), I had to get two units of blood and I convinced the Hematologist to order apherized blood rather than packed-red-blood cells, which most hospitals prefer. The PRBC material is chock-a-block full of Heparin to keep the product from coagulating. The apherized product contains much less anti-coagulant. Your Hematologist might already know that but pursue the question if they balk at the apherized blood. You probably already know more about your condition than they do unless you are very lucky and have a doc who isn't ashamed to hit the internet and refresh his/her memory.

Hoping your Hgb is in the reference range!

John the elder

1 Like

Hi

My name is Debbie

I just joined and I have type 3 VwD . I am 52 years old and have only met 2 other people with VwD although I am part of another group for severe VwD on FB .

Look forward to sharing ideas and experiences with other people with type 3

Also curious if any of you have had children and how old they are because growing up I was told that no one older than me had kids. As modern medicine improved I beat those odds and was blessed with my two miracle children a son of 24 and a daughter of 23 so I am curious if anyone my age or older on this site has had kids too

i am type 3. have had few trips to hospitals but hasnt slowed me down yet.

I have type 3! Yay for the children of parents who clearly met at a so you carry a rare bleeding disorder convention... :P

I am so happy to see this encouraging post! You have type 3 and I have type 1 but you have children this is very encouraging. Everyone on my post is saying that I will die basically if I have a baby. I don’t agree with that and your situation proves why I shouldn’t :). I say not everyone will have a life threatening pregnancy. I’ve read that women with VWD can have normal healthy pregnancies.

Hey Stacy et al type threes,

Just had a trace of hematauria, (take a guess at what that is), while in the bathroom the other day. Went to the hematologist and since the symptom only went on for a couple of days, he said make an appointment with a Urologist.

The Urologist performed the usual prostate gland exam (it involves lubricant and double gloves, ladies) and detected nodules on the surface of the prostate. He suggested a biopsy which is performed through the rectum with ultra-sound and a #12 coring needle taking a dozen to eighteen cores through the prostate for analysis for active cancer cells. He also wrote a scrip for a PSA blood test. When I explained what VWD type III with inhibitors was, he immediately said go to Moffitt Cancer Center in Tampa. At least he didn't say hold on a minute while we perform the biopsy in the office!

At my age, (73), PSA tests (a test for nascent cancer in the prostate) aren't generally done for the old man category, I scheduled a PSA. The PSA had to wait a week as digital pressure on the prostate causes unusual PSA test results. So now I wait for the number from the lab. In the mean time I am conferring with Moffitt Cancer Center, the preeminent Cancer hospital in Central Florida. Their response was "hold on while we confer with the biopsy staff to evaluate your situation.

For those of you with prostate glands or are good friends with one, you are probably familiar with the side effects of treatment - incontinence, bleeding in abdominal area, loss of sexual desire, infection and death.

For Hemophiliac A patients, which is pretty much our category, surgical prostectomy is not the first choice. Radiation can cause bleeding and all the other side-effects. Doing nothing may be the best choice as the biopsy of nodules often results in a negative for cancer. Nodules can form from other causes. About forty percent may be negative.

As a side-note, the DaVinci robotic surgery device is often used in surgical prostectomy and other operations that you may be advised to have. Guess what happens with bleeders like us....... the blood removal pump on the cutting edge of the DaVinci has a limited pumping ability which means bleeders can flood the surgical area faster than the pump can remove it leaving the surgeon unable to see what he is doing on the camera screen. You can imagine the surgical team saying "Oh (expletive deleted) now what do we do????"

My hematologist agreed that the Moffitt team, if I elect a biopsy procedure, should treat me with Alphanate and IGIV until my APTT is within the reference range before the biopsy.

So now how do I do a reasonable "risk analysis". Anybody out there with experience?

John the elder

Actually, before my brother was born..no one in my family had been diagnosed with von Willebrands. Him and myself both have type 3 severe. Our parents are considered "carriers" and have never been diagnosed. Although recently at educational meetings I've attended they have said there is no such thing as a "carrier" that in order to pass on type 3, both parents must have at least type 1. But mom & dad have both been tested and have never been diagnosed......so my hematologist is a little intrigued with our family to say the least :)

Pandamandabere said:

I have type 3! Yay for the children of parents who clearly met at a so you carry a rare bleeding disorder convention... :P

Glad to meet everyone who has been diagnosed with Type 3! Other than my brother, whom also have Type 3 severe, I hadn't really met anyone else with my same type. My first meeting with some was at my first NHF awhile back and I was so amazed and loved sharing stories with them. And with the NOW conference, I got to attend the first 2 and ended up meeting over 13 with type 3..and we all took a photo together. Every time I look at that picture, I feel so blessed that I am not alone and that we all have had our fair share of "horror stories" some worse than others. So, it's great knowing others as it is nearly impossible to talk with someone who has type 1 and try to relate to them. (sorry if that sounds harsh) So, thank you all for responding to my post and my apologies for the late response on my end...I had done without internet for awhile. Hoping this site gets a mobile app for phones other than the iPhone soon! :)

Take care all <3 & keep in touch!!

Type III here. Had a liver transplant two years ago after 25yrs with chronic HCV. Just completed Sovaldi treatments 1 month ago and so far no virus returned. Cirrhosis with vWb III was hellish for ten years of ever worsening bleeds (G.I., Mucosal, was doing Humate P 3-4X

Per week. Nearly bled to death from esophageal varices that burst. But never stopped working.

Now it’s like I’m doing a Benjamin Buttons - I feel like I did in my 40s. I have more time with kids and go months without a bleed.

Nice to meet ya’ll

Yea!! more good news from fellow type IIIs! I continue to suffer from great health and great CBC. My Hgb, yesterday, was over 16 and my Hematologist and I talked about hobbies he could start at his retirement. I had a book with me, while waiting, called C++ for dummies, about learning computer programming. Other than always being careful with sharps and my wife and I continuing a reasonable diet of fruits, veggies and non-red meat in modest portions, I am doing nothing unusual to explain my good results. Oh yes, I am practicing living a low stress life that includes some Wellbutryn and a small dose of Alprazolem, but if that is what it takes to control the GI bleeds than I am happy to take the pills.
It is so nice to hear other people are living well with the Sword of Damocles hanging over their heads!

John the elder

My son has type , stress from his mom & I divorce resulted in severe bleeds , over the years stress always seemed as a trigger for severe bleeds , today he lives virtually stress free and has had no a a severe bleeds in a year or so . By severe I mean being in bed for 5 months in a row and his legs literally not strong enough for him to walk any distance other then to bathroom and kitchen . I definite agree with the gentlemen in previous text that living stress free can have a phenomenonal positive impact on handling the disease

Greetings! I realize no one ha posted here for while, but I thought I’d jump in anyway. :slight_smile: I have type III and i have never met anyone else who has, or indeed been part of any support group of any kind before. I ran into someone a whole ago who had VWD and I shocked myself by how weirdly excited I became. It was the first time I realized what a relief it was to speak to someone who understood what it was like trying to figure out what was wrong in the first place, etc.

Anyway, life went on and I only remembered to look up groups like this, just this week!
So here I am :slight_smile:
It’s amazing to see so many on this post and to read your stories. Bless you all!
I have certainly had my fair share of Stories and dangers, but in the last decade or so I have done very well and steady, without any crisis moments, thank heavens.
I do try not to run with scissors :wink: and my friends and co-workers are very diligent in not letting me use certain knives in the kitchen or do things they think are too dangerous in that way.
I have been very blessed and cared for.

One thing I’m very curious about is whether there have been any breakthroughs in this field, medically speaking or not. I have assumed not, but then I have no idea how to find out.

2 Likes

your story sounds just so so SO similar to mine. a few months now that i’m in full blown problems and there seem to be no medication or medical sites online (i ended up searching for even hgh pharmacy in hopes that at least something would help) that can help me with. i’m new here and thats why i was searching for people with whom i could talk to i was thinking that there are very people with type 3 out there…

Greetings!
It’s nice to meet you :slight_smile:

I hope that you’re doing all right and that things balance out for you. Certainly if I hear of anything I will share it here.

Have you just recently found out you have it or have you known for a while?

Hi Debbie I’m 54 and was diagnosed in the summer I have 2 boys 29 and 27