Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (4)

Sep 23, 2018 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Hi Sue, My son is 44 and also diagnosed with MAC which is being treated by the amazing doctors at Mayo Jax. He has Alpha1 which effects his liver and lungs. In June of 2017 his diseased progressed to end stage liver disease, they could not transplant at that time due to the MAC. They did the same studies you mentioned to see if it reacted to the 3 antibiotics. It did so they started the therapy at the end of July 2017. By December the cultures where negative so we were able to get him on the transplant list in February. He will remain on the three antibiotics at least one year after the first negative culture. In the beginning his white count fell low so they have been giving him Neupogen injections to boost the counts. The low counts are a combination of the antibiotics and liver failure so they lowered the dosage of the antibiotics a little. His eyes are also checked every 6 months to watch for any changes the antibiotics may create but so far no issues there. So about 14 months after starting on the MAC treatment it is under control, no eye issues, continuing the antibiotics and waiting for a liver that is a match.

Sep 15, 2018 · Ostomy: Adapting to life after colostomy, ileostomy or urostomy in Digestive Health

Colostomy crash course for me. In 2013 I had a perf colon, emergency surgery removal of 1/3 of my colon & a temporary colostomy. The hospital in VA setup a bag that attached to a wafer & had to be emptied and cleaned. Initially I developed a blister under the wafer. Thankfully someone else with a colostomy recommended using witch hazel on my skin when I changed the wafer. Wow what a relief, no more blistering. When I got back to Jacksonville I received sample bags from suppliers and found a disposable bag. Another thankful find! Not only did it hold up to the FL heat (I think it was something called an active lifestyle bag) but it didn’t leak and when I was out all I had to do is remove/dispose of the soiled bag and slip on a new one. Definitely made life easier and more livable. I just couldn’t understand once I found the desposible bag why a hospital wouldn’t start with this type of bag instead of dealing with the risk of spreading germs using a reusable bag. Of course the most obvious thing is the inability to “plan” when a bag would become full. Again disposable bag to the rescue. Two other items that I couldn’t do without are the little wipes, one helps remove the sticky to get the wafer off and the other is a skin protector you rub on before applying the wafer.

I also found out my insurance company specifically excluded ostomy supplies. Of course this is totally illogical since it’s not like you can just not use them. I did call the supplier who initially told me it was covered when I ordered my first month of supplies. The supplier told me they have a special phone number and website to use to get the supplies for a lower price if insurance didn’t cover them. So, please do NOT rely on the supplier, contact your insurance company. I also googled and contacted several ostomy manufacturing companies either via their website or toll free number. I received some wonderful samples of different types of bags, carrying pouches (similar to a makeup bag), scissors to trim etc. They were quite generous with the freebies they sent and it helped to see what was available not to mention to have a handy little supply kit to keep in the car.

My ostomy was reversed by the wonderful doctors at Mayo Jax after 6 months. I sure did learn a lot in a short time. In 2017 I was diagnosed with Ulcerative Colitis so either a jpouch or colostomy will probably be in my future.

Sep 2, 2018 · Alpha-1 Antitrypsin Deficiency - just been diagnosed in Lung Health

My son is a 44 y.o. ZZ alpha with liver & lung disease. The smartest thing we did in 2014 when he was diagnosed was established him at Mayo Jax with liver and lung Doctors. Today he is receiving weekly infusions for his lung issues and listed for a liver transplant. This is the testing process suggested for us.
First siblings to be tested, so if you have siblings they should definitely be tested.
Next your husband should be tested to determine if he has an Alpha gene. If he does there is an increased risk for your children having 2 alpha genes.
Since you KNOW you have an S & Z each of your children WILL have an S or Z since you get a gene from each parent. Meaning they are “carriers”
The problems arise from the fact that their is so much unknown about Alpha1 & why some people are more severely effected and others not. The only thing know for sure is if you have it you must protect your lungs from not just any tobacco products but also any airborne substances that could be harmful. And protect your liver from any medication prescribed or over the counter that could damage your liver. Yes no alcohol too.
You can get FREE anonymous testing from the alpha foundation.. they will also assist in getting the infusion meds approved from your insurance company.

Sep 2, 2018 · Alpha-1 Antitrypsin Deficiency - just been diagnosed in Lung Health

This is the contact info for the Jacksonville area alpha1 group. I just recently found this group so I haven’t been to a meeting yet. I think they are targeting October for the next meeting due to Jessica’s upcoming due date. Jessica also just happens to be a genetic counselor at Mayo Clinic.
Jacksonville Alphas At Gmail (sorry the site won’t let me post her email correctly so put the words together in email format)
Jessica Jackson, MS CGC
Board Certified Genetic Counselor
Alpha-1 Foundation
Alpha-1 Support Group Leader
Jacksonville, FL