Was reading the CDC website on VWD and it was recommended that individuals with VWD consider treatment at a Hemophilia Treatment Center (HTC). The only one in Hawaii where I live is at the women's and children's medical center about 25 miles away from where my daughter lives.
Are any of you receiving your care from a HTC? I don't think my daughter's hematologist suggested she get involved with the HTC and just wondering about what advantages there are to doing so. It does sound like if she (or her children if one or both are found to have VWD) were to need emergency care, that would be the best place to get treated since the contact information indicated that one should ask for the hematologist on duty. But am I assuming correctly that she would have to change to a hematologist who is connected to this HTC?
It does seem that a multi-disciplinary approach works best with any condition but wondering if anyone can share about their experience with a HTC?
I have gone to both HTC hemotologist and clinical hemotologist and it seems that the later were much less helpful. Clinical hemotologists seem to be more scatter brained when it comes to dealing with emergencies, they are not acclimated at handling rare disorders. It would be benificial in my opinion, to make the the HTC your primary and if you want your local hemotologist secondary or your local contact.
and good luck with the "multi disciplinary" thing unless you're at teaching hospital,--I cant' get physicians to work together at all, at least here in Connecticut. No one will coordinate care, I have to try and do it myself.
My daughter has been seen at both and HTC and at a hospital with a Hematologist but no dedicated center. She is currently seeing her Hematologist at the latter. I found that during the initial diagnosis process and subsequent testing the HTC was very valuable. However it was also about 25 miles or so from home and with heavy city traffic travel time is over an hour. Last year we were required by our insurance to switch to a Dr. who was not in an HTC but was a Hematologist/Oncologist. We were very nervous about making this change as she had had her first Hematologist for 3 years. The upside to this was that the new Hematologist was a fresh set of eyes and had a lot of new ideas that ultimately changed my daughters life for the better. It also helps immensely that he is only a few miles from our house. If your insurance allows it I would take advantage of both the HTC and a Hematologist that is closer to your home. The two could communicate thus sharing ideas and expertise which could help your daughter a great deal. Also some Dr.s practice at multiple facilities. As far as emergency goes the hospital where our Hematologist practices is fully prepared to deal with any emergency problems that may arise and we can be there in less than 10 minutes. This gives me great peace of mind.
My Hematologist interned at Florida’s largest Hemophilia treatment center so I got lucky.
Doctor shop if possible. Otherwise have copies of treatment protocols from NIH or Australian Health, etc. Share the protocols from NIH with the treating doctors. Let them know. YOU know some of the possible treatment options. I have shown Nurses the online directions for administering push IV of Alphanate when they looked nervous. I always have the laptop with me on the bed. Google knows the answers. (The Nurses appreciated that I cared about their nervousness, they didn’t like that the syringe was worth thousands of dollars! They liked the fact that I showed them the official stuff from the company rather than trying to instruct them in their field.) You can do this with professionals. It’s the non-professional types that are defensive and try to make medicine a mystery.
Train your favorite ER by talking to them after a visit is over. They have a manager! If there are problems, and I have had them, DEAL with the Hospital Ombudsman. Those people exist and their job is to solve issues before YOU call 1 800 LAWYER. My Hospital Pharmacist told me to my face that he wouldn’t order Alphanate (P Humate) because it was too expensive. Five seconds later I was calling the Ombudsman and thirty seconds later she ushered the Pharmacist into a closed room. Two minutes later he came back and said that, of course, he would order the medicine. After that he discovered that he could “borrow” Factor VIII, VWF and keep it on the shelf at no cost until it was needed! (( It comes dehydrated in a kit and has a long shelf life)) An easy solution because the system does work if you know which lever to pull. I have taken advantage of that availability several times. No hospital within a few hundred miles keeps it in stock and the others apparently order it air-shipped. Talk with these people you MUST deal with because of the disease. Communication is a terrible thing to waste!!!
We all have a duty to get these professionals we depend on to save our lives or our children’s’ lives. Because you took the time to train your Mds you will vastly improve the treatment given to the next VWD that comes into the facility. At least that is what I think is a good reason for all the time I spend in “prior preparation”.
I have registered with the National Hemophilia Association (USA) and they send me regular info regarding coagulation issues. VWD type III is the pretty much the same as Hemophilia A, type one and two can be considered milder Hemophilia so they are a good source of information.
I am getting more and more info for a med. journal “Patient’s Point of View” article.