From New Zealand:
I have type 1 diabetes, type 1 von Willebrand disease, and type 1 Osteogenesis imperfecta. I find that with frequent testing my blood glucose control is excellent, and my A1c is always between 5 and 6.4, however, even the tiny pricks for blood testing are a nuisance at best, to stop from bleeding. I find I need to apply pressure (I've had a break from this) and usually something cold for at least 10 minutes after a test, and, if I so much as pick up a hot drink, for example, with that hand anytime that day and sometimes the next, it will re-open and bleed a lot. I alternate hands for testing with a few days on each, to avoid not being able to enjoy something as simple as a coffee without a "free" hand to hold it. I don't often bleed from shots, but I do usually bruise though. I'm on MDI (Multiple Daily Injections) of five to eight injections a day, which works brilliantly for control aside from a strong dawn phenomenon, but involves a LOT of bruising and the occasional bleed. Fewer injections resulted in what I feel was unacceptably poor control, and stress from the strict regime. Easy bruising is common with both Osteogenesis imperfecta and von Willebrand disease. I regularly have someone check my injecting technique and it is correct. I also change my needles faithfully and use the finest size appropriate needles. I've been told by doctors before that I "must be doing something wrong", until I encouraged them to look up the conditions.
Are there any internationally available, reliable testing means that don't require blood, that are suitable for someone with both diabetes and a bleeding disorder? Is it okay so test the fingers of an arm that has been set for a break? Sometimes it's very hard to use the other one. I don't think I've seen any alternate site testing meters/strips here. Are people with mild-moderate bleeding disorders able to use pumps? I don't often bleed at injection sites, but the multiple bruising from MDI is uncomfortable and ugly, I'd also love the advantage of being able to address my strong dawn phenomenon with a pump. Perhaps I could get a trial a pump, to see if it was okay with my von Willebrand disease.
Can you suggest a good way of explaining that I have a combination of disorders that need to be allowed for and treated appropriately when in hospital, particularly at an Emergency Room where staff might not know me? I often have to carry a letter from my regular doctor at all times. I also already wear a Medic Alert bracelet at all times, and still have to explain repeatedly my entire medical history before staff will accept that I know my specific treatment needs for the multiple illnesses with which I live. Often, I receive no treatment, or pain relief for breaks, etc, until I've convinced the staff that all three have been diagnosed in one person. I find the stress of this often compounds the problem by affecting my blood sugar.
- No, there are no other recommended means of monitoring besides the blood sugar testing.
- Have you considered using an alternate testing meter so that you can use forearms instead of fingertips for routine testing? The fingers are still more accurrte, especially when the glucose is changing rapidly. However, the capillary density is less and may lead to fewer spontaneous bleeding episodes (I say "may" because I do not have actual data to support this).
- As I was reading your question, I wondered whether you would consider a pump. Theoretically, you would only have to place the catheter once every three days. I guess it is possible that there may be some bleeding around the site. However, you could try inserting the catheter with your diabetes educator before committing to the pump to see. I would think this is a lovely idea to try.
- You have a coagulopathy and type 1 diabetes. The osteogenesis imperfecta should not interfere with the diabetes. However, I am sure it has its own problems with bone pain and fracture.
Last Updated: Tuesday April 06, 2010 15:09:56
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