Currently I'm still on TPN and unable to eat orally. We are waiting to possibly do manometry testing to confirm gastroparesis (paralyzed stomach), and/ or intestinal failure from malabsorption and delayed motility. I'm also being evaluated for SMAS, which is caused by the intestines being compressed by an artery, that same one also caused my Nutcracker syndrome. If I have SMAS then I'll need surgery to correct it. My POTS also has calmed some, so I can walk short distances now. 

Another treatment that we are going to explore is IVIG infusions or immunoglobin replacement therapy. As of right now though, there is not much of a treatment plan moving forward otherwise. But I am medically stable for the most part.

 

Since December of 2021, things have changed a lot. On December 9th I had a huge surgery to correct my vascular malformation. I had/ have Nutcracker Syndrome which is when one of your arteries in your body crushes your main left kidney vein. This causes the left kidney to essentially be starved of blood and refluxes the blood into other parts of the body. My left kidney’s vein was only functioning at 7.9% and this also caused my body grow collateral veins to help maintain blood flow. One of these grew through my spine and another through my adrenal gland. Both of which had began to cause significant damage on their own. 

In Utah, an experienced transplant surgeon had performed a kidney auto transplant. Mine was a new technique where they just move my kidney to my pelvis to relieve the compression. Usually in a traditional kidney auto transplant they move the left kidney to the right side. So you have both kidneys in the right side of your body. This however wasn’t an option due to not having enough space so the hybrid surgery was done. 

After surgery I had quite a few complications. It caused my Dysautonomia to go haywire. Dysautonomia is when your body can not maintain your normal automatic functions. So I became completely wheelchair bound temporarily due to my heart beating too fast from my blood pressure being too low. This caused me to faint instantly when I stood up; this is called POTS. I also had my MCAD flare severely so I was put on IV Benadryl because of the back to back anaphylactic reactions. The pain though from the surgery was horrific. So I was transferred to a rehab hospital after 2 weeks in the normal hospital. After 2 more weeks I was able to fly home. 

I continued trying to recover at home and received my custom wheelchair in March. I also had my port replaced because of a fibrin sheath in March and in July my new port had flipped. So far my 3rd port has been doing good.