Ellen

Birth Date
4/26/56

Gender
Female

Heritage
Caucasian,
European

Nationality
American

Alpha type
lung

Alpha gene
ZZ

Alpha Level
17

Diagnosed
October 2004

Last FEV1
60%

Treatment
Advair, Spriva,
Prolastin

Siblings
5

Children
2

Ellen

jrvan@shaw.ca

I live in Vancouver, BC, Canada.

I am an Art Educator.

I have two cats.

3/5/05 I had pneumonia in 2002 and never seemed to regain my lung capacity after that. Lots of trips to family doc complaining of shortness of breath, a few more episodes of respiratory infections that were eventually treated with antibiotics, etc. Doc put me on puffers and said she thought I may have developed a mild case of asthma. After two years of me insisting that something wasn't right I was referred to a doctor specializing in internal medicine who ordered battery of tests and made the AAT diagnosis. Now I am seeing a pulmonary specialist, had a CT, have been diagnosed with moderate emphysema, trying to convince my specialist to get me started on augmentation therapy. He would like to monitor my condition for 1 1/2 years before he recommends the treatment.

Since my diagnosis my siblings have all been tested. Two negative. My older brother is ZZ. He's been on oxygen therapy since he was 45...My younger sister (Nancy) is a ZZ. She was diagnosed with emphysema 2 years ago. Neither one had ever heard of AAT until my diagnosis. They both have started on augmentation therapy within 2 weeks of being diagnosed. Doctors in the States seem to believe in the benefits of the infusions...I hope that I can convince my Canadian doctor to get me started when I see him again next month.

It's been a rough few months for my family with the diagnosis of three of us and all a bit overwhelming. At least we have our own support group!

10/24/05 I started Prolastin infusions in August 2005. It took a lot of persistence on my part to get my pulmonary specialist to agree, but my determination paid off! After 6 weeks of in hospital infusions I am now getting the treatment in my home every week. So much more convenient for everyone! In August I traveled to Michigan for a family reunion. My brother, sister and I all had our infusions at the same time at my brother's house.

4/6/07 My brother Larry, who was ZZ, died on April 1, 2007 at the age of 52. He had liver failure, along with all of the other major organs. The secondary cause of death was listed as Alpha 1 Anti Trypsin Deficiency. It is a great loss to my family and all of his friends. It is also quite frightening for my younger sister Nancy and I who are ZZ. We feel blessed that we were able to get Larry to a beautiful hospice for the last two days of his life and he died peacefully.

Submit or Update your Alpha-1 Story on Spiderspun