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Amber (MMA, Mut 0)


MMA, Mut 0

As I approach the five-year anniversary of my transplant, I recall all that I went through in the hospital — people who visited me, workers who went out of their way to get me things I needed, saying beep-beep when coming out of the elevator backwards, communicating by giving a thumbs up or thumbs down with my brother when I couldn’t talk. Signing to my mom (I only knew the alphabet, so I was kind of limited lol). Wow, it has been a long time since my most recent update.

I received the white-cane training that I mentioned in my previous update, as I am legally blind. I do go out using a cab or Uber to familiar places. I visit my grandmother. I tried to volunteer at a senior center visiting residents near my home, but because of my low vision, they thought it would not be a good fit for me. Another accomplishment I recently made is that when I go to follow-up appointments, I make my way in to the doctor’s office while my mom parks the car.

I went to about four different wound treatment centers over a three year period before my surgical wound finally healed. The scar tissue completely formed after a non-invasive skin graft called “Eric Ericson Expansion Theory.” A small amount of skin was scraped from my thigh, and then sprinkled onto the open wound area along with a solution. In about three weeks, the new scar tissue formed.

In the fall of 2016, doctors noticed that my calcium level was critically high…so I was admitted to the hospital and treated with IV saline and an increase in my Sensipar, which brought the calcium level down. However, my calcium level continued to rise and I had to be readmitted on several occasions. In order to solve the hypercalcemia problem, I had to have surgery on November 30, 2016 to remove three and one half of my four parathyroid glands. The surgery took longer than normal because of scar tissue that the surgeon encountered. On December 2nd or 3rd, I was given the antibiotic Linezolid because I had a low-grade fever. This antibiotic caused severe diarrhea. On December 4th at 11:00 p.m., I had a seizure lasting three and a half minutes. I was transferred to SICU. On December 5th at 11:00 a.m., I had another seizure lasting one minute. My mom asked that the Linezolid be stopped since I did not have a fever and my white blood cell count was normal. After researching side effects of Linezolid, we learned that this antibiotic can lead to seizures in people who are predisposed to seizures. We have now added Linezolid as one of my allergy meds. I had no more seizures and was transferred to the transplant unit. I was discharged from the hospital on December 9. My calcium level now seems to be stable.

During my admissions for treatment of the high calcium levels, some medications were skipped for a week — just many different oversights by different people. I am 33 years old, but these oversights would not have been noticed had my mom not been there with me. I am happy to be home now and doing much better.

Peace and love,

Amber, age 27

I am 27 years old; I have been working at BB &T Bank as a wholesale check processor for the past five years.  I have 27% kidney function and have been evaluated for a liver/ kidney transplant (LKT).  I will be the first MMA patient to have this transplant at Johns Hopkins Hospital in Baltimore, Maryland.
I am currently in Dr. Venditti’s research study at NIH in Bethesda, MD.  Out of 100 people in the study, my MMA levels are one of the three highest at 9,000 micromoles.  About two months ago, I developed optic nerve atrophy.  The vision in my left eye is 20/400, and my right eye is 20/50.  The doctors at NIH and Hopkins think this is due to the high MMA levels.
I am on dialysis while waiting for placement on the waitlist for the LKT.  Before dialysis, I was eating 37 grams of protein per day.  I am now eating 60 grams per day.  It is predicted that I will be off all MMA and kidney medications after the double transplant.  I am very nervous about this because I have never had an operation.  Luckily, two of my friends have had the double transplant successfully.                

Best wishes,
Amber, MMA, Mut 0
Bowie, MD

From the October 2011 OAA Newsletter

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