After almost a full year of fighting very hard to get surgeries for my extremely rare vascular compressions I am happy to say my kidney auto transplant is a success! Nine local doctors couldn't help me, five trips to Mayo Jacksonville and two trips to Baltimore Maryland is what we had to do to in the last 10 months. Then numerous rehospitalizations when I returned after surgery with complications.
On my journey to find help for the vascular compressions: Renal Nutcracker Syndrome, Median Arcuate Ligament Syndrome, May Thurner Syndrome and Pelvic Congestion Syndrome I was sent to a thoratic surgeon to look at the compression of my heart and lungs by my deformed ribcage which is called Pectus Excavatum.
My body was crushing itself all over the place suddenly but the one thing I've had since birth was my dented sternum. My entire life and living in different states and countries I was always told the Pectus Excavatum was "just cosmetic" even though I felt like it was not. I was always told to get breast implants to hide the deformity which I did five years ago.
While at Mayo for the vascular compressions I suddenly was tortured by, I was sent to get a "pectus protocol" workup done. My Pectus Excavatum is not at all "just cosmetic"!
My spine and sternum are less than one inch apart at exhale. When I bend at the waist or sit my heart, liver and even aorta get smashed. When I eat and my stomach is full my sternum pushes everything into my heart which then races with tachycardia and I faint or nearly faint a lot bc my heart has no room.
The pectus surgeon would not touch me until the vascular compressions were addressed. I've been cleared for this next step and return to Mayo on May 26 for the next step in this process.
When I had MALS surgery the Ligament that holds the celiac artery was released. It supplies blood to a lot of organs including most of the GI tract. My recovery has been HORRENDOUS and terrifying. I lost 25 lbs in January but have regained the ability to eat thankfully.
At my first and recent surgery follow up it was discovered that my celiac artery is no longer compressed by my ligament but it is still compressed. Doctors have never seen someone with MALS and Pectus Excavatum. Most agree doing the Nuss Procedure to lift my sternum and get rid of the dent should help my celiac artery, my heart and my lungs. We hope it will help my celiac artery but it will definitely help my heart and lungs.
Three or four metal bars will be inserted into my ribcage, secured on the sides and my sternum cartilage will be cut shorter. The bars will remain there for four years and then get removed in hopes my ribcage stays in it's new, normal, shape. This is called a Nuss Procedure.
The implants will be removed and none of the plastic surgery to reconstruct me is covered by insurance. I'm devastated! But I also want to be healthy and breathe. Giving my heart room will significantly change/help my health and possibly my entire vascular system if I am lucky.
This surgery is supposed to be done before a person is full grown and before bones are hardened. It is very difficult to find someone to operate on an adult but I found one of the best.
Pectus Excavatum is measured in something called the Haller Index. Anything above 3 is severe. Mine is 4.9 at inhale and 9.9 at exhale.
This will hopefully be our last time flying far away for a surgery for a rare condition. I am really hopeful after this next big surgery I will be okay again. Life has been turned upside down to say the least. At 37 I was suddenly hit with all of this and became basically disabled. I miss everything I used to do including working so very much!
I need help with travel costs, lodging and the out of pocket expenses as we have been living off of one income for nearly a year now since I became so sick. This is the last big step to Life 2.0!
I also have to pay for any plastic surgery to remove and replace or reconstruct my breasts out of my own pocket.
Thank you all!
This is why I call it my "Cereal Bowl" lol