Carrying The Weight of my Health on my Shoulders

After my Intracranial Hypertension (IH) diagnosis, I was cruising along with the adjustments of adding Diamox and it’s lovely side effects into my life. Things were going somewhat normal, my back pain was improving, and physical therapy was complete. One night in June, I had pizza for dinner, and woke up in the middle of the night nauseated and in a ton of pain (abdominal). I tried to take a vicodin to relieve the pain, and I tried a bath. The pain continued to worsen over a couple of hours so Mr. Lucky took me to the ER.

While in the ER, they told me that my liver enzymes were ALL off, indicating something was going on, and my CT scans and ultrasound showed fatty liver, but no kidney stones, or gallstones that were visible. They sent me home strongly emphasizing that I needed to be tested for Hepatitis based on my liver counts. (Which all ended up negative)

I followed up with a GI doctor, who recommended an Endoscopy. He mentioned that the Diamox could cause increased liver enzymes/chronic liver failure (yep – that’s right now I am 28 with a chronic liver failure diagnosis too!). The Endoscopy came back completely normal and the doctor suggested it indicates more of a gallbladder problem. I was instructed to schedule a HIDA scan as part of my post-operative instructions. (Which I still haven’t done – I’ve been dragging my feet because it’s a pain in the butt!)

During the ER visit, it was also discovered that I had some pretty severe anemia, so Dr. Wonderful told me to take Iron supplements. I took them, and burped them up a million times per day. My iron levels still weren’t improving because I was still bleeding heavily. (When am I not? The times I am not bleeding = probably 6 weeks out of a year total, and I rarely get more than one week solid without it) So she then referred me to a hematologist for iron infusions.

So I began my quest at the local cancer specialist who does the iron infusions, and started with them once a week on Fridays. I was not permitted to drive because apparently there is a chance of allergic reaction to the medication so they pump an IV full of Benadryl first. The first infusion was uneventful (other than being a hard stick for ANY bloodwork or IV’s). I slept through most of it, and noted that I needed to bring a blanket next time because the room was cold. The nurses were very nice, and the patients were too. There were many tv’s on in the room to help pass the time. I was there approximately 3 hours for each infusion. The Benadryl made me so groggy I would often sleep the entire day away which made it difficult to care for Lucky Charm. Thankfully, my sister and Mr. Lucky were around to help pick up the slack on these days. I went for infusions for 6 weeks. At the end my iron levels were one number below the low end of “normal” but they said it should continue to go up over time because of the infusions.

Eight weeks later, I went in for a re-check, and they are low again. The nurse practitioner tells me we need to really buckle down and get to the bottom of the root cause (my bleeding) and that a hysterectomy would be necessary to alleviate this and the anemia. I told her it wasn’t that easy, but I was frustrated with all doctors at the time. How can I just go get body parts removed when there is no good explanation for why this is all happening, and how they all have some relation to one another. Where do you start first?

This led me to the discussions with Dr. Wonderful about weight loss surgery.

JMLLSignature

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