Health Update 9/8/2019

You can read my all my diagnoses so far here. I also updated my About page if you'd like to take a look at my journey and specific posts on the blog.

• Just had my first appointment Friday with the interventional radiologist, I was fortunate he even took me as a patient because he's not taking many anymore, but did on my cardiologist's behalf
• In the process of diagnosing May-Thurner and Pelvic Congestion Syndrome with a venogram and seeing the degree of the Nutcracker compression to decide what route of surgeries (cardiologist was able to diagnose the Nutcracker with an ultrasound he had done Thursday)
• Waiting for the call to know when we will schedule the venogram and how long of a wait
• Depending how compressed the renal vein is for the Nutracker, treatment would be a kidney autotransplant
• If I am confirmed with May-Thurner, we may stent the iliac vein first to see if there is relief. Coils are usually put in to treat the Pelvic Congestion Syndrome, but if there are compressions and those aren't fixed first, it can cause more pain and problems. If the Nutcracker compression is not severe enough for the transplant, and we try a stent or coils with no relief or symptoms improving, then we will go ahead and do the transplant as well.
• My IR was honest and the pain and recovery for an EDS patient even for the stent and coils can be very difficult. Realistically everyone is so different you can't know ahead of time if you will get relief and if the relief may only be on a scale 3 points of an improvement.
• Once coils are put in, they usually cannot be removed. If for some reason they need to be because of a reaction to the metal or the coil has traveled, many doctors will not perform the operation and if so, it will be open surgery.
• There are also risks of not having treatment or surgery done. Because of the compressions and blood pooling, not only the pain and not being able to function, but blood clots and organ damage can be caused from not enough blood flow.
• Thankfully I have the best doctors in the state and country, and awesome Facebook support groups that have feedback on the doctors, surgeries, and risks, but a lot to think about and trying to just pray and trust God on the best decision we can make.

Right now I'm in a valley, but that's ok.  

"In the valley, I will lift my eyes to the one who sees me there."