VWD and impaired healing

[husky86]

I haven’t been officially diagnosed with VWD, but I’m fairly certain I have it. My sister has been officially diagnosed, along with her daughter; furthermore, I nearly died on 3 separate occasions (surgeries when I was younger), as each time the surgeons nearly gave up trying to stop the bleeding. I was also administered some type of bleeding test while in elementary school: they cut me with a small razor and waited to see how long it took for the bleeding to stop - it never did. I was rushed to the hospital an hour or two later, but they did not discover the issue at that time. (This was in 1978. I am now 49 years of age.)

I do not have health insurance. I have paid out-of-pocket for the von Willebrand blood panel; I went to my primary care physician (internal medicine specialist) who ordered the test (sent to the Mayo Clinic). It was over $1000. It came back negative.

However, since I found this site, I have learned that a number of members of this forum who were ultimately positively tested for the disease had initial testing that was negative.

Quick question to begin my inquiries (other questions will follow in the coming days):

Does the disease have anything to do with the prevention of normal healing processes?

Meaning, all of my life I have been a very slow healer. For instance, I am presently recovering from muscle tears (pelvis) experienced in 2012, tears which have not fully healed 6 years later. Other instances of slow healing in my life have been numerous.

The latest treatment I have utilized in association with these muscle tears is platelet rich plasma therapy (PRP therapy). I have had 3 rounds of this therapy over a period of a little less than a year. Thus far, they have been primarily unsuccessful. The pain specialist who has administered the PRP treatments is surprised with my lack of progress and believes that von Willebrand’s disease may play a role here. However, he has noted on multiple occasions that the medical literature simply doesn’t exist with regard to whether the disease has an impact on PRP therapy.

I have been tested on multiple occasions for diabetes. The test always came back negative. As of 18 months ago, my internal medicine specialist ran what she referred to as a “most comprehensive blood panel” to check for any anomalies - the cost was nearly $3000 - and absolutely everything came back normal.

Any information anyone may be able to provide with respect to whether there’s a connection between slow and/or incomplete healing and VWD would be most sincerely appreciated.

Thanks!

[ModSupport]

If you go to the home page and click on the magnifying glass it will allow you to search this site for old topics. There are a number about healing and about how blood levels change so that sometimes people are “normal” and other times they are “positive.” You might find some helpful info.

azurelle

[VWDgirl]

Hi! Welcome to the group.

I could have copied and pasted your post as my own experience, as it is practically identical. I was tested numerous times throughout childhood but always came back negative. Parents, sister, grandparents, all had a history of unusual bleeding events but they, too, were never diagnosed. I can’t tell you how many times I was cut to get a bleed time. I was always having non-stop nose bleeds, excessive bruising, gum bleeds, tonsil bleeds, hemoraghing after surgery, blood clots after surgery. Constantly monitored for diabetes (always came back borderline and there is a strong family history). You name it, I had it but couldn’t get diagnosed.

Finally, after I had surgery and had severe bleeding complications afterwards, my doctor suggested I get tested for VWD. I told her I already have been but they never found anything wrong, so I had given up asking about it. She said it wasn’t normal and insisted I get tested again, as they had new tests now.

Off I went to the hematologist. He took a family history and personal history of all my bleeding events. He said “I’d be surprised if you didn’t have VWD because everything I had experienced was classic of VWD, along with the family history of problems.”

Fast forward to getting my test results back and the hematologist coming in, looking at the lab sheets, scratching his head, and telling me everything came back NORMAL! But then he showed me the results and told me not to be fooled by the “normal” results. He said I was actually what they call a “False-Negative for VWD.” He carefully went through all of the test results with me showing me that lab labeled everything in the normal range. Then he told me to look more closely at my actual results and the ranges for normal. All of my results were just barely above the minimum level for what is considered the normal range. He said that what that adds up to is a blood system that by all accounts isn’t operating at optimal performance. I’ve posted before about how he said my blood was like a car that runs and may get you from point A to point B, but the oil needs to be changed, you need new spark plugs, and your running low on gas. It doesn’t take much to tip the system into collapse.

He said in my case we need to pay more attention to the qualitative part of the diagnoses, i.e. The personal history and family history, rather than the quantitative history, i.e. Platelet counts, RBC counts, etc… My blood system acts like a person’s with VWD, therefore, I get treated like a person with VWD. I need to get desmopressin before major surgeries and if I have significant bleeding events. Sometimes I have to get iron infusions when I get iron deficient anemia and my Fe and RBCs dip too low.

I hope you find the answers you are looking for and I hope that by sharing experiences, you will find comfort in knowing you are not alone in dealing with the frustration that sometimes comes with having a disease like this.

[husky86]

Thanks so much VWDgirl for your post. It gave me comfort to know someone else has experienced these same challenges. I’m specifically grateful for the details you have shared, as they really do mirror my own.

I can perfectly identify with the number of times you were cut testing for bleeding disorders. I still have scars up and down on the inside of my forearms from these tests, even all these years later.

I had my first major surgery when I was 11 years of age. When the surgeon went out to the waiting room to inform my parents following the procedure, the first thing out of his mouth was, “We nearly lost your son… We had basically given up hope. We simply couldn’t stop the bleeding.” Similar surgical events would follow; yet looking back, I am puzzled as to why not a single one of these surgeons told me anything about von Willebrand disease or any other blood disorder. (Perhaps they didn’t know either.)

When I was in my late 20s I had intestinal surgery. When I woke up in the recovery room, one of the nurses asked me how I was feeling. She had just placed a very large and thick warm blanket (preheated) over my entire body. I told her I was doing basically well, although I felt cold. She told me the warm blanket should help; she also said she would be back several minutes later to check on me. When she returned she once again asked me how I was doing and I once again informed her that everything was fine except for the fact that I had grown even colder. She grabbed yet another thick preheated blanket and placed it on top of me. She left thereafter, returning about 10 minutes later. “How are you doing now?” she asked. I told her I had grown colder still.

Of course, by this point she was puzzled. After retaking my vitals, she then went to ask the doctor about the fact that I was always reporting the feeling of being cold. When she returned she said she wanted to examine me a little more closely. As she removed all the blankets that had been stacked on top of one another, when she finally got down to the simple gown I was wearing for the surgery, she immediately let out a gasp. I was lying in a pool of my own blood and the gurney was serving as a mini wading pool for this blood. She started screaming for help and immediately thereafter I was being wheeled back into the operating room.

I could provide other examples, but of course this will suffice.

I have an appointment scheduled with the Bleeding Disorder Center of Alaska of Providence Hospital (Anchorage) late next month. It was their first opening. I’m hoping I can finally get the “stuff” which has been missing all these years and which will once and for all enable me to heal.

It is impossible for me to adequately convey how exhausted I am of never being able to heal in a normal fashion. Whenever I injure something, it veritably stays injured. It’s almost as though every serious muscle strain (and now a tear) becomes a permanent aspect of my health. It’s been this way all my life and no doctor has ever been able to tell me why.

I had one doctor tell me that I was simply lacking a sufficient amount of protein each day. “If you increase your protein intake by at least 50%, these other symptoms should go away.” Of course it didn’t work. Another physician told me I needed to ingest shark cartilage and concentrate on other nutritional products such as glucosamine, as I apparently was not ingesting a sufficient amount of collagen-building nutrients. Other theories were also flouted by medical professionals over the years. You may have experienced similar frustrations.

Hopefully next month will bring the answers I am so anxious to receive. I am so ready to begin the healing process.

Thanks again!