Wow, it’s been a whole month since I last posted here. Did you miss me? 😉
February was very rough, and I’m glad I can now look back on it.
Here are all the latest appointment updates. Beware, this is super long!! If seeing doctors was my full time job, I’d be rich. 😉 For those on facebook who already read my “mito” update, just scroll down to pass that one. 🙂
Mitochondrial medicine (posted Feb. 16th):
1. My hypomagnesemia is related to the mitochondrial disease—a lot of his patients deal with the same thing and need daily IV fluids with magnesium just like me. Still going to be seeing nephrology at OHSU on the 29th.
2. He wants my doctors to aggressively treat the Wilson’s Disease and start me on another chelating drug in addition to the Zinc Acetate I’m taking. Unfortunately, there have been no studies showing that WD causes a mitochondrial depletion (which was found on my muscle biopsy). This means treating WD probably won’t help improve the mitochondrial symptoms, but he’s still interested in how treatment goes!
3. He is going to ask the lab to check my whole exome sequencing analysis (done last year) for Wilson’s Disease gene abnormalities.
4. I will be starting Alpha Lipoic Acid in addition to my other mitochondrial co-factors and antioxidants.
5. He thinks that in the next 2-3 years, I’ll be eligible for a drug trial. So far, one that he’s involved with looks promising.
6. I’m dealing with another painful jejunostomy feeding tube infection… 🙁 Thankfully I didn’t have to go to the ER here! He was able to prescribe antibiotics for me, but he said I need to follow-up with my GI surgeon right when I get back!
7. One more thing, he said he won’t forget me and that I’m very memorable! 😉 😀
I followed up with my GI surgery team the day after I got back from San Diego. To my surprise, I had to have a small unexpected surgery called “incision and drainage” at the site of my j-tube infection. It was very painful, and for several days after that, I had to pack the wound with gauze twice a day. The resident cultured the abscess, and we received results the same day I was in Seattle on the 22nd to see my pain dr. My cultures grew a bacteria called Enterobacter Colacae Complex, so I was switched to a different antibiotic. I was on antibiotics for a total of 11 days. Thankfully, the infection is now gone, but my j-tube site is raw and super painful due to bile leakage. This has been a problem since November, so my GI surgeon referred me to Wound and Ostomy Care. Haven’t seen them yet, but hopefully soon..
The ophthalmoplegia (eye muscle paralysis) in my left eye is stable which is good news. 🙂 The vision in my right eye is continually getting weaker, though. 🙁 My right eye is either working too hard because my left eye doesn’t move well, or this is due to the copper accumulation from Wilson’s Disease..
It was soo good to see my pain dr. at the UW Medical Center on Feb. 22nd. He gave me a big, long hug! For those who don’t know, he’s my favorite doctor out of all. 🙂 He spent over an hour and a half with me. From the appointment and neuro exam, he came to the conclusion that I’m currently not dealing with Complex Regional Pain Syndrome. He thinks I have Small Fiber Polyneuropathy which is very similar to CRPS but also indicates nerve damage. The plan is to try and switch to a different and new medication….similar to the one I’m on, but he’s seen better results. I’ll also be getting another bilateral lumbar sympathetic block, but it will be done here at OHSU. We talked about Spinal Cord Stimulation, and sadly, he doesn’t want to put one in yet because my health isn’t stable, I’m on IV nutrition, and I just got over an infection…all big risks. If I were to get an infection in my spinal cord from the surgery, he would never be able to forgive himself. I trust him completely and understand, but I AM disappointed….hopefully things look up and I can get one down the road!
I had a GI follow-up after we got back from Seattle, and my dr. ordered lots of blood work to be done to check on all my vitamin levels and minerals since I’m on TPN. We should get results on Friday.
My GI dr. spoke with my hepatologist a couple weeks ago. He said that my hepatologist will be calling sometime soon to tell me that he wants to repeat some Wilson’s Disease tests. He wants to see how the Zinc therapy is going and if it’s helping remove copper from my body.
I saw my nephrologist for the first time this past Monday, and she is amazing! So blessed to have her on the team. She ordered lots of lab tests to be done tomorrow to try and get to the bottom of why I’m dealing with Hypomagnesemia. I really want to cut back on my IV fluids with magnesium, but that’s going to be hard to do if my level keeps dropping. Hopefully these tests give us some answers. She’s looking into 2 kidney disorders, and I pray I don’t have either. I don’t think I can take another diagnosis!!
Today I saw my pulmonologist for the first time to assess my weak respiratory muscles. I had another pulmonary function test, and we compared the results with the one done at Cincinnati Children’s. It wasn’t good news. One of my values showing lung strength decreased from 72 to 46. That’s a big decrease, and this level is seen in chronic respiratory failure. 🙁 So I have to get another PFT done in 6 months to keep an eye on this. Taking it one day at a time, and I know I’m in the Lord’s hands. Here is something good—all my other pulmonary tests (including chest x-ray) are normal. 🙂