It’s been a little bit since I’ve written anything about my health. At my last couple of appointments I got some upsetting news and I needed some time to process it all before I was ready to share.
Because of my connective tissue disorder and the recent amounts of breaking blood vessels and bruises I have had, I was referred to a hematologist for more bloodwork to check on my clotting factors and things such as that. The hematologist told me that if I needed surgery or was in an accident that I should be ok because my blood clotted ok. I had looked at the results online which didn’t fall in normal range but I trusted that the doctor would have told me if something was wrong. I had a follow up with my general practitioner and he informed me that the results showed that I have a clotting disorder called Von Willebrand. I am still confused why the hematologist never told me about this. I asked my general practitioner if there are different severities of this and he said yes, so all I can figure is that he didn’t mention it because it isn’t the severe level. I would most likely be ok having a general surgery or if I were in an accident that was not too severe.
This diagnoses was about to have a bigger impact than I would have liked though. From the time I was in high school, I had considered a breast reduction because I have always had back and neck pain. I never went through with it because I wanted to be able to breast feed my kids and knew that could affect that possibility. More recently and with all the further medical problems I have had, I have considered this procedure even more. I am done having children, have had two back surgeries, and have constant pain from my other conditions so it only stood to reason that this surgery could benefit my pain levels. My general practitioner had agreed and I had an appointment with a plastic surgeon set up. I was confident that it would be a no brainer and I would have the surgery scheduled shortly after the consultation. I couldn’t have been more wrong. The plastic surgeon said that there is no way he would consider doing the surgery. He said normally I would be a textbook case for the procedure but instead I am a textbook case of high risk. He said that my connective tissue disorder coupled with my clotting disorder and my autoimmune disease would put me at way to high of a risk for this surgery. He said that if I didn’t die during the surgery, I would likely end up with an infection that would cause extreme complications to my healing or death.
This all made me look at things very differently than I had. I asked the plastic surgeon why I was able to survive my back surgery. He indicated that the difference is that there was no change to the area. I was opened up, fixed, and put back together the same way I was. With a breast reduction there is removal of tissue which contributes to blood supply and there is a lot of changes made. So, when the hematologist said that I would be ok if I needed surgery that meant basic surgeries. This, as you can probably imagine, is some scary information. If I were in an accident or needed any more major surgeries, I could have some serious complications.
On a much lesser note, I was also diagnosed with Raynaud’s Syndrome. This is very minor in the grand scheme of things I deal with, but makes cold days even harder for me and the pain in my hands gets pretty intense sometimes.
On a positive note, the injections that I take at home for my autoimmune disease coupled with the regular antibiotics are seeming to help my symptoms. I haven’t had any further infections and the injections usually give me at least a few days a week with more energy and less pain. I am hoping that as they build in my system, this will only improve. For now, everything continues to be one day at a time with some better than others, but I am thankful that these treatments are showing some positive results:)
Thinking of you