I have type 1 and previously explained how I started with nose bleeds a few months ago but years ago I hemorhaged and also had a stroke after a surgeon gave me cryoprecipitates - he didn't know what he was doing. Would some of you explain to me how you deal with your fears of future bleeding? I'm very frightened that I'll have serious bleeding again in the future. Just the sight of a tiny bit of blood today on a tissue put me in a tailspin once again. How do you all cope?
Also, I used to travel and now all I can think about is "how far am I from a hospital" or "there's no way I can travel to a foreign place, not knowing where a hospital is".
Hey- so I also have type one and I stopped being scared about my VWD after getting involved with the bleeding disorders community in my chapter. They will answer all your questions about traveling and what to do about doctors and stuff like that. Whichever state you live in add that to " the hemophilia foundation of" and that’s probably the chapter in your are. You were also probably diagnosed by a hematologist but even if you weren’t thy answered all of my questions.
I also struggle with those issues after a traumatic incident with VWB. It’s been 13 years and my fears are still there, but not quite as bad. Wish there was more info on this.
Hi Gilligan Girl: I am male 60yr old vwb III severe with chronic HCV, liver transplant, now on Sovaldi treatment HCV neg. I’ve had many brushes with death (especially bad bleeding with cirrhosis). I’ve been a photojournalist, traveled extensively, have master’s and PhD degrees, five children, built wooden sailboats, climbed mountains, hit hiked through Mexico, etc. the point of saying this is not for my ego, but to say you have to find a way to live life to the fullest by following your passion. For me, courage is one part denial, one part creativity and three parts planning and preparation. Just like going on any adventure, for vwb equip yourself for emergencies, pack the necessities for your trip, establish a support system that you can rely on, then take reasonable risks. Knowledge is empowering, so learn about your body. Think of vwb as a blessing. It uniquely helped me to understand and truly empathize with other people who feel marginalized and “different.” Invaluable for a journalist and researcher. A gift that gives you unique skills and abilities. I know this advice is up at the 40,000 ft altitude variety, but it’s how I cope and survive the fear and trauma. Find your passion, look below the surface, into your heart. Make goals that truly are what you want. Then do your research, pack for the journey, have fun along the way, embrace who you are in the world and keep the fear in its place, not a ruler, but a trusted advisor. Accept who you are as being blessed with different abilities, knowledges and skills. Get your medical and social supports in place. Find trusted medical advisors. Ask lots of questions and always be skeptical of doctors. Take charge of your own health care.
Don’t mean to sound preachy or in anyway invalidate your fears, which are real. You can do this.
I want to thank each and every one of you for your responses. I have reached out to be "friends" in order to make specific inquiries.
I will be meeting with someone from the Arizona Hemophilia Assoc. on Monday and I hope they will be able to provide me with additional information/education. My doctors have been wonderful but I'm a Type "A" personality, so I want to know EVERYTHING! I have not been given any information to date about how to be prepared in case I wish to travel again, etc. All I know is that it's a disease that will on occasion, show up and at other times, I'll clot like a "normal" person. I was informed I would have to have the DDAVP IV in the event I required surgery. I do not have the nasal spray at this time. Is that what you all are using or have on hand?
Again, thank you all and I hope you will respond to my friend requests.
I have a personal relationship with Jesus Christ, I know I can leave it in His hands as He won't allow anything that isn't part of His plan for me and I know without question that He is always with me. Of course being human, I have to remind myself sometimes!
You probably already know I am a type III acquired VWD with a history of multiple GI bleeds, some of which were pretty much out of reach of the GI people. They hate it when I call because they can scratch me with their tools very easily.
I have had a great six months.
I will do anything to reduce anxiety as there is a strong association of "anxiety" with the onset of the GI bleeds. My wife and I lost two of our four children to essentially depressive illness or bipolar disorders so we have lots of triggers for anxiety like the calendar, certain music, holidays and birthdays now remembered but not shareable. I don't like having to deal with peoples' dogs in Public areas. I don't like being in rowdy gatherings or crowds.
I carry Stimate with me on any trip more than fifty miles from my home hospital which keeps alphanate on the shelf just for me. I have lots of bandage/tape/coban/gauze in each car and at home. I have really good boots and gloves and I always have a hat on when I am out. My Hematologist is preparing a set of recommendations for ER departments that don't know me. I wear a medic-alert bracelet with VWD info. I don't climb my antenna towers and I don't walk around on my roof as a fall would be a very bad thing if internal bleeding started.
ON THE OTHER HAND!!!!!
I am learning to play the banjo. I am active in civic affairs. I am an active amateur radio operator. I have sizeable gardens, mostly flowers along a 200 foot roadside. My wife and I tend to stay within 70 miles of home but, with type I, you have a lot more choices depending on the VWF levels and your response to Stimate (ddavp). A little research and a few telephone calls may give you peace of mind for those longer trips. Cruises may be off the list but then maybe you can arrange for a few units of blood to be on board. There are people from all over the world on this site and you may find they can tell you about good hospitals.
If you have anxiety issues, like I do, there are many medicines that can treat that issue. I take Xanax and Wellbutryn with good cause and I am fully comfortable doing so. I would be rather caustic to anyone who would have issues with that. Walk in my moccasins for a moon, thank you very much!
So be upbeat and positive. You know it could be worse if you follow a few of these sites. Did I say I also do kayaking down here in Florida?????
Love and good luck from west central Florida, Gilligan Girl
Thank you everyone for your replies. I've attempted to reach out and become "friends" in order to ask specific questions. No responses yet. Indeed, do I have to be a friend in order to be in contact with you privately? Some of the questions I want to ask is, do you all get nosebleeds on a fairly regular basis? Are they spontaneous or caused by blowing your nose? Do you all use Stimate (nasal spray)? and if so, do you carry it with you all the time?
Thanks for your ongoing support. I truly appreciate it.
Hey Gilligan Girl, It can be unnerving at times to wonder when the next bleed is coming or if the drs will handle the event in a sensible manner. Fear is a hard emotion to tackle and we all do it in our own way. I guess for me it is about being well informed (which I find difficult at times) and then moving forward w the activities I enjoy. If I didn't do anything, just to protect myself from bleeding, it would not seem like much of a life. I have bleid out once, had several sever hemorages, and am feeling w G I b!eeds now. My bleeds have not been about high risk activities, but just every day stuff. I am 63, female, work as a social worker and own and race two open wheel sprint cars. For me it about doing things I enjoy, taking g good care of my health, and having a life. Don't know if this is helpful , but life goes on even if we bleed.
I recommend seeking psychological counselling. My daughter has been going since she was diagnosed with VWD and it has helped her immensely! Just to get all her issues off her chest is a positive and healthy thing to do. Try to live your life the way you want to. We still travel because we love it. Just plan ahead so you know where to find help if you need it. Good luck!