Since I was first diagnosed with Alpha-1 Antitrypsin Deficiency in January 1990 my life has been a bit of a roller coaster.
Initially it did not bother me much but as time went on and my pulmonary function results began to go down I started to get concerned. Periodically I was depressed but luckily I was able to shake it off pretty quickly. Now I am almost 66 …twenty years on and I have survived well.
My lung functions are down considerably. I attend Beaumont Hospital for my out-patients check-ups. I am under the care of Dr. James Doody, GP in Balbriggan Medical Centre, and Professor Gerry McElvaney in Beaumont Hospital. Both are brilliant doctors and are very understanding of Alpha-1.
Winters for me are not easy. Over the last New Year, I was hospitalised with pneumonia and pleurisy. I was in for two weeks and on returning home acquired another infection. I was also involved in the hospital in the home care service, which I found extremely beneficial and have participated in various research studies for the Alpha One Foundation. The local health centre in Skerries have been extremely helpful in my care and provided essential support.
Home oxygen was prescribed in April 2005, which I take regularly…16 hours daily, and find very helpful. I am very active mentally, read a bit, write a bit, talk a lot, laugh a lot and watch TV sport a lot. I have suffered from depression from time to time and commenced medication for this a while ago. I have had no dips in my mood for a long period of time. I am still learning to cope with my breathing difficulties. I have a large circle of friends who call in all the time. I love going out for a ‘spin’ with some of my visitors, which I do at least twice a week. The weather has been difficult this summer again and the winter, all too soon upon us, does not excite me much. But it is important to face it one day at a time and not to worry now about December or January. Maintaining a positive outlook, while not easy, is vital!!
I had great time for Larry Warren, former CEO of the Alpha One Foundation, now moved on. Also I am regularly in contact with a Walter Mannhertz in Germany. He is head of the patient support for the whole of Germany. Walter believes that regular communications between patients is important. I do keep in contact with a number of people with various lung disease and talk to them all the time.
Joe Clinton, 3rd September 2009.