102 Chapter 6 “I had received DDAVP in advance. A few days after surgery I got fever because of an abdominal abscess. I was found to have a bleeding behind the sutures.” “So, in advance I received Haemate- P (a factor VIII/VWF concentrate), they gave large quantities because I had a history of heavily bleeding. I had a hysterectomy and everything went well, only a hemorrhage occurred in one of my ovaries. Therefore, I had a prolonged stay in the hospital for two weeks to receive extra Haemate-P.” One woman asked for in-depth review after a complicated hysterectomy. “I asked the doctors to please find out what exactly was wrong with me. I knew it wasn’t normal that I bled so much during surgery.” Although some women experienced bleeding complications during hysterectomy, they would choose surgery a second time, because it provides a definitive solution for HMB. Others would have liked the opportunity to make an informed decision and might have chosen EA: “I had such an anemia, something had to be done. I went to the gynecologist and she suggested bipolar endometrial ablation.” “Everything went well, super! Am really happy with the result. I had no anesthesia, just day care. My quality of life absolutely improved. Yeah, I just really should have done it much earlier.” Preconditions for support women with VWD All the women said a good relationship with the professional based on trust, and sharing information was essential for good support. All participants carry a medical passport or VWD information leaflet with them. They became wise by experience: “My previous GP always liked it when I shared the mailings that I received from the VWD association with him.” “It’s a matter of habit, I always show the doctors and nurses the leaflet about VWD. I underscore what is important to me. This works best to get good care. That was my experience and now my advice to other patients.” “I am a member of the patients’ association, they have a list of all hospitals where you can go as VWD patient. When I go on vacation I always check in advance in which hospital I can receive help when needed.” Participants saw accessibility and continuity of care as important preconditions for personal support in VWD women: “Whatever happens, you can call them; they immediately know who you are. They are so friendly and super nice.”
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