So as some of you may be aware, the specialist who had been following me at Strong Memorial Hospital here in Rochester, NY, Dr. Georgianne Arnold, left for a new job at Children's Hospital in Pittsburgh.
Met her temporary replacement, Dr. Jennifer Kwon, yesterday morning. Appointment went very well. Ammonia was only 55, which for me is good. I know that is not optimal but I also range high. I am not currently anemic and that is something I always struggle with. My amino acids were within the normal range.
So I do not have to go back for another year. In the meantime, I am going to try eating some probiotic yogurt everyday to try and deal with some tummy/intestinal issues I am having. We are also going to try and get my heath insurance to cover citrulline or arginine again since I will be on a new health plan after the 1st of the year.
Only bad part of the appointment was getting my labs done because once again I got a phlebotomist who did not understand the importance of putting the vial of blood for the ammonia level on ice right away.
But knock on wood, I am stable and and the doctor was happy with my labs so I am happy.
Wednesday, December 1, 2010
Wednesday, June 2, 2010
Bone Yard trying to open for Kiss
Please go to this site and vote for Bone Yard to open for KISS at Darien Lake in Darien Center, NY on August 13th.
My hubby, J.J., is the lead singer for Bone Yard and KISS is his favorite band so opening for KISS is his dream of a lifetime.
Please e-mail me or contact me via Facebook if you have any questions regarding voting.
Tuesday, May 18, 2010
ADULT Patient
Why can't the metabolic specialists that I deal with reagrding my OTC remember that I am an adult and as of Memorial Day weekend 2010 will have been diagnosed for 25 years and as a result I am familiar with this disorder and sometimes I know what is best for me....FRUSTRATING!!!!
Friday, April 30, 2010
Food Cravings & Salt Intake
Anyone who has ever been to a National Urea Cycle Disorders may have noticed that every year there are several foods that keep reappearing on the luncheon buffet....this is because there would be outright revolt if you tried to serve UCD patients lunch without these foods available.
The foods in question are:
These are the foods that got me to age 12 without being diagnosed.
As my mother says she could get me to eat my sandwiches if I could have the crust removed and have chips & a pickle or two.
For some reason a lot of UCD patients I have met also crave high sodium foods. For example, after I was initially diagnosed by Dr. Brusilowe he took my salt off my meal trays to see if it would change my eating habits. That did not last long after he saw how much it affected my appetite.
I guess what I am trying to say to the patients and families out there is that I have figured out as a UCD patient that if I am having a food craving it is usually for a reason and I have just learned to go with it. Also, after attending several NUCDF conferences and seeing other UCD patients craving the same things that helps me and my husband realize my cravings are not that insane.
The foods in question are:
- Pop (never diet) and chips (flavor of chips varies from patient to patient...I prefer regular)
- Potatoes (tater tots, french fries, potato salad (my personal favorite - I go through at least 5 lbs. in a week))
- Olives (both green & black) & pickles
- Fruit (strawberries & grapes are my favorite) - my advice for those of you having trouble getting your kids to eat this stuff buy some chocolate dip and up the calorie content
- Italian dressing & mayonnaise or Miracle Whip - we use it up the calorie content of higher protein foods to make them more edible (as my dad says to this day..I like to have a little egg salad with my mayo)
These are the foods that got me to age 12 without being diagnosed.
As my mother says she could get me to eat my sandwiches if I could have the crust removed and have chips & a pickle or two.
For some reason a lot of UCD patients I have met also crave high sodium foods. For example, after I was initially diagnosed by Dr. Brusilowe he took my salt off my meal trays to see if it would change my eating habits. That did not last long after he saw how much it affected my appetite.
I guess what I am trying to say to the patients and families out there is that I have figured out as a UCD patient that if I am having a food craving it is usually for a reason and I have just learned to go with it. Also, after attending several NUCDF conferences and seeing other UCD patients craving the same things that helps me and my husband realize my cravings are not that insane.
Wednesday, April 21, 2010
Tale of my OTC diagnosis
I was diagnosed with OTC (ornithine transcarbamylase deficiency) by Dr. Saul Brusilowe at Johns Hopkins Hospital. What is interesting about my story is how I ended up in front of Dr. Brusilowe.
To start with you have to understand that I grew up in (and still live near) Rochester, NY.
In 1985, when I was 12, my aunt had made plans to fly with my grandmother to Virginia to visit my aunt and uncle. My grandmother backed out of the trip at the last minute because she was afraid to fly. Since the trip was planned for Memorial Day weekend and the plane ticket was non-refundable my aunt asked my parents if I could accompany her to Virginia. They said yes.
Right before we were to leave on the trip I came down with sinusitis but my pediatrician told my parents that as long as I took my antibiotics that it was okay for me to fly. So I took my first plane ride and arrived with my aunt in D.C.. I was so lethargic by the time we landed that from what I understand my uncle had to carry me through the airport.
To make a long story short we spent one night at my aunt & uncle's in Virginia and then drove to their cottage on Chincoteague Island. The morning after we arrived at Chincoteague we all went to the beach as it would be my first time seeing this ocean. I pooped out early as I was still not feeling well so my uncle took me back to the cottage to lay down. When I woke up I had a little bit of my appetite back so my uncle fed me a roast beef sandwich and turkey noodle soup. After I ate I went back to lay down until everyone else returned from the beach. When my aunt from Virginia returned from the beach she found me comatose. She is a retired nurse so they drove me to the island medical center. I was then airlifted to Salisbury, MD. The hospital in Salisbury thought I had Reyes Syndrome as I had been given aspirin to combat the fever I was running due to the sinusitis. Salisbury decided the best place for me if I had Reyes Syndrome was Johns Hopkins Hospital in Baltimore so I was airlifted to Baltimore. Mind you that to this day I remember neither of these flights.
So that is how I ended up in the PICU at Johns Hopkins where I woke up I believe a little less than 24 hrs after I went into the coma. And that is where Dr. Brusilowe found me and after talking to my mother (after she flew to Baltimore from Rochester, NY) about my eating habits and my weight. I was 12 yrs old and I was the shortest girl in my class and weighed about 50-55 lbs. diagnosed me with OTC. I was put on Phenylacetate and Benzoate and spent 3 weeks at Hopkins in the PCRU and flew home just in time to attend my 6th grade graduation. Was there so long because all this medication was experimental at the time so they wanted to track me closely.
So as a result of this I am a huge believer in fate because if I had never gone on that trip my life today would be totally different.
To start with you have to understand that I grew up in (and still live near) Rochester, NY.
In 1985, when I was 12, my aunt had made plans to fly with my grandmother to Virginia to visit my aunt and uncle. My grandmother backed out of the trip at the last minute because she was afraid to fly. Since the trip was planned for Memorial Day weekend and the plane ticket was non-refundable my aunt asked my parents if I could accompany her to Virginia. They said yes.
Right before we were to leave on the trip I came down with sinusitis but my pediatrician told my parents that as long as I took my antibiotics that it was okay for me to fly. So I took my first plane ride and arrived with my aunt in D.C.. I was so lethargic by the time we landed that from what I understand my uncle had to carry me through the airport.
To make a long story short we spent one night at my aunt & uncle's in Virginia and then drove to their cottage on Chincoteague Island. The morning after we arrived at Chincoteague we all went to the beach as it would be my first time seeing this ocean. I pooped out early as I was still not feeling well so my uncle took me back to the cottage to lay down. When I woke up I had a little bit of my appetite back so my uncle fed me a roast beef sandwich and turkey noodle soup. After I ate I went back to lay down until everyone else returned from the beach. When my aunt from Virginia returned from the beach she found me comatose. She is a retired nurse so they drove me to the island medical center. I was then airlifted to Salisbury, MD. The hospital in Salisbury thought I had Reyes Syndrome as I had been given aspirin to combat the fever I was running due to the sinusitis. Salisbury decided the best place for me if I had Reyes Syndrome was Johns Hopkins Hospital in Baltimore so I was airlifted to Baltimore. Mind you that to this day I remember neither of these flights.
So that is how I ended up in the PICU at Johns Hopkins where I woke up I believe a little less than 24 hrs after I went into the coma. And that is where Dr. Brusilowe found me and after talking to my mother (after she flew to Baltimore from Rochester, NY) about my eating habits and my weight. I was 12 yrs old and I was the shortest girl in my class and weighed about 50-55 lbs. diagnosed me with OTC. I was put on Phenylacetate and Benzoate and spent 3 weeks at Hopkins in the PCRU and flew home just in time to attend my 6th grade graduation. Was there so long because all this medication was experimental at the time so they wanted to track me closely.
So as a result of this I am a huge believer in fate because if I had never gone on that trip my life today would be totally different.
Tuesday, April 20, 2010
Hello!
Well, I am really bad at introducing myself but here it goes...my name is Amy and I am an adult patient with a urea cycle disorder known as OTC (ornithine transcarbamylase deficiency).
Some of you may know me from the National Urea Cycle Disorder Foundation conferences. I was the adult patient that spoke at the conference in 2008 (?).
I am writing this blog in hopes of connecting with other adult UCD patients and their families. I say families because as my spouse, J.J., can tell you it is not always easy living with a UCD patient.
I will be posting a photo of myself and my family members (that would be the hubby, 2 cats and 1 dog) later.
I work full-time outside of the home and my side project is taking photos of my hubby's band, Bone Yard, and selling the band merchandise (t-shirts, shot glasses, etc.) when they play out.
My story of my diagnosis is a long one so I will save that for a separate post.
Wishing good health to all my fellow UCD patients!
Some of you may know me from the National Urea Cycle Disorder Foundation conferences. I was the adult patient that spoke at the conference in 2008 (?).
I am writing this blog in hopes of connecting with other adult UCD patients and their families. I say families because as my spouse, J.J., can tell you it is not always easy living with a UCD patient.
I will be posting a photo of myself and my family members (that would be the hubby, 2 cats and 1 dog) later.
I work full-time outside of the home and my side project is taking photos of my hubby's band, Bone Yard, and selling the band merchandise (t-shirts, shot glasses, etc.) when they play out.
My story of my diagnosis is a long one so I will save that for a separate post.
Wishing good health to all my fellow UCD patients!
Subscribe to:
Posts (Atom)
