Last week, I had my appointment with the hematologist at Strong. I have been having rupturing blood vessels, especially in my hands that are very painful and leave nasty bruises. They break suddenly without any reason. I have also been bruising a lot in general without any real injuries that I can recall to explain them. My rheumatologist and my neurologist both thought it would be best for me to see a hematologist (blood specialist) just to be sure that my blood was clotting correctly and that there was nothing that they might have overlooked.
When I saw the doctor last week he said that I had a large amount of blood in my hands which he seemed surprised by and said that he had some concerns but that it could be attributed to my Sjogren’s. He decided to do a bunch of labs just to check my clotting function and a few other things. They drew seven tubes of blood and he said that they would have the results by today and that I could call to go over everything then.
My results started showing up in my online chart the day after the draw and some as late as yesterday. As is usually the case with blood draws they list the name of the test and where the number should fall in “normal” range and then what my number is. There were several that didn’t fall in normal range. It is no surprise to me at this point that I don’t exactly fit in the bracket of “normal” so I try not to get too concerned until speaking with the doctor. Many of the tests I have to google to even understand what they are. I wanted to have an idea of what I might be told today though so that nothing shocked me too much.
The tests showed that I had some liver function abnormalities which the doctor confirmed when I spoke with the office today. As I stated in my original post, my disease has affected my lungs and my kidneys. It appears that now it has decided to visit my liver as well. The numbers weren’t drastically out of range and so the doctor wants me to have this monitored closely, but as with the other organs there is nothing more that they can do that isn’t already being done to combat it. The disease is progressive and has no cure. My iron levels were also low despite taking multi-vitamins so they suggested that I could add more iron supplements if I wanted. In regards to my rupturing blood vessels, I have a disease called Ehlers Danlos which is a connective tissue disorder. This causes my connective tissues to be more fragile and he feels that this is the direct cause of my rupturing blood vessels. They said that my blood vessels and especially the small ones in my hands are like glass and just break very easily. Also, the reason they break more frequently in my hands is because there isn’t much “cushion” in your fingers and hands to protect them when they are already fragile. The good news is that my blood is clotting normally so there is no concern there. This is quite painful at times and leaves some lovely bruises, but the good news is that there is no further concerns about it.
So, for now I just need to increase my iron levels and keep doing what I have been doing with some additional liver function tests from time to time. Hopefully it will take a slow pace with my liver and the medicines will keep it at bay. Please consider visiting the Sjogren’s website or purchasing a bracelet from me to help in the fight to cure this terrible disease.