I am feeling very alone, I know others who have had similar issues but I would love to speak to someone who faces everything. In April it was discovered that I had multuple large blood clots in both of my lungs. I thought I was just having an asthma attack with really bad shortness of breath. My now primary I think thought it was something more and found the blood clots after an CT scan I also had a small clot in my leg behind my knee. I was given herpin and coumadin for what I understand once they started the coumadin I end up with Coumadin Necrosis so they stopped it and I end up with skin issues from it. It was stopped before I needed any major surgeries to correct the damage. A good bit of my skin one side did peel and I have still some nerve lost throughout my stomach and breast areas. On top of that I developed large what feels like knots I think they a still blood clots under the skin. They hurt at least if they a bugged by clothes.
I don't know if I will regain of the feel that was lost. Due to the fact that I can NEVER take coumadin I am on Lovenex and it is unsure from my last visit with the hematologist if it is another 6 months or the rest of my life. Each of three specialist who deal with this issue have different opinion what it length of treatment needs to be. They aren't sure why it happened. All the test they ran didn't show anything that would have caused this to happen which is why there is a debate on how long I will need the blood thinners.
Is there anyone who can give tips on how to prevent the pain of the medication, reducing the needle holes that like to bleed, or even if they have you use something to do the shots so that you aren't sticking yourself with two big needles. I am limited at this point that I can only do shots above my belly button due to the fact every time I did shots below I would gain a giant bruise with pain. After one week after being discharged from 14 days in ICU my HH went down to 7 and I needed another week and 4 units of blood. They reduce my lovenox from 300mg to 200mg and so far no large bleeding again. They did place a filter after the second bleed to prevent more issues.
I also have diabetes, immunity deficit, high blood pressure, steroid dependent asthma (have been on oral steroids for 4 years), and a number of other issues due to long term steroid use. It is hard to find anyone who also face a number of challenges they can share tips on how to deal with all of this at 30 years old.