I Run for Alpha-1
My name is Chip Trahan, my wife is Jennifer Trahan and this is our
Alpha-1 story.
You can also follow us at: http://www.facebook.com/irunforalpha1
It was February 2008, Jennifer, her mother, stepfather and I were all in the hospital room minutes away from Jennifer going in for a routine surgical procedure when the Anesthesiologist entered the room to introduce himself. After a brief conversation he was on his way out when he asked Jennifer “So has anyone discussed the spot on your lung with you?” We were all somewhat in shock and apparently it showed because the Anesthesiologist turned to make a quick exit and told us that we could discuss it with our OBGYN after surgery. So with tears in her eyes and just before surgery our story begins.
We obviously discussed the spot on Jennifer’s lung with the OBGYN during our post op meeting and he stated he didn’t know what it was but something showed up on her x-ray that he wanted to take a closer look at. A CT Scan was scheduled and her OBGYN reviewed the results but still wasn’t sure what the spot was so he referred us to a Pulmonologist here in Houston. So with the CT Scan in hand we went to visit this doctor. While in his office he viewed the disc we were given by the OBGYN and after about five minutes of some fairly standard questions he calmly and coldly told us we were probably facing “The Big C”. Cancer? Are you kidding me? We just went in for a simple routine surgery and now we have cancer? We were told there would be other tests to confirm but he wanted us to be prepared. The first test, a bronchoscope biopsy, came back negative. A second biopsy was scheduled as was a PET Scan. A couple of days after the PET Scan the doctor called my wife on her cell phone and informed her that the results came back positive for cancer. He still wanted to go through with the second lung biopsy which would yield more information on the cancer itself. This second biopsy used a CT Scan to guide a long needle into the lung to remove a piece of tissue to be tested. An unfortunate side effect of the biopsy was a partially collapsed lung for Jennifer. Good news though! The results came back negative for cancer. However they came back positive for bronchiolitis obliterans with organizing pneumonia (BOOP) which is a rare lung condition usually found in people after they’ve had certain infections, rare disorders or even transplants. Jennifer didn’t fit into any of those categories. This process had been on going for several months and during this time Jennifer was very ill; losing weight and coughing constantly. This pulmonologist told her she had bronchitis this whole time and had her on cough medicine. Finally now with this diagnosis of BOOP Jennifer was given several rounds of steroids and finally began to feel quite a bit better. Her doctor still ordered at least two more CT Scans in the following weeks to make sure the spot on her lung continued to decrease in size.
Needless to say we were less than impressed not only with this doctor’s communication skills and lack of empathy but also the multiple tests, the incorrect diagnoses and lack of answers. So we chose to change doctors and were referred to our current Pulmonologist Dr. Pat Herlihy (WONDERFUL) with the Pulmonary Critical Care & Sleep Medicine Consultants in downtown Houston. Upon the first review of Jennifer’s CT Scans Dr. Herlihy asked if anyone told her that she had emphysema. After some initial medical background questions Dr. Herlihy ordered some blood tests. As I’m sure you have guessed by now Jennifer was positively diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1), a ZZ diagnosis and within a month started treatment of weekly infusions of Prolastin.
Our first treatment was done at a local outpatient infusion center to make sure there weren’t any ill side affects from the medication; other than being in a very intimidating environment it went as well as you could expect. After the first treatment Jennifer began getting weekly infusions at home with her new nurse whom we are glad to say is still with us after nearly three years. Initially Jennifer was getting the treatment intravenously through the veins in her arms. Her veins had always been somewhat weak so this became very painful and messy at times; her veins kept blowing and rolling and sometimes it took several attempts for the process to work. Several times means being poked up to six or seven times in an attempt to get a vein and it even got so bad at times the infusion wasn’t even administered. This continued for nearly a year so with some encouragement from me and her nurse (along with lots of research on Jennifer’s part) we decided to get a port implanted to ease in the process of her treatments. “Portville” as we call it has greatly improved treatment and Jennifer is now in a good routine with minimal distraction to our week. We have very active lives and we even travel several times through the year and are very fortunate that Jennifer’s nurse is very flexible and works around our schedules to ensure Jennifer gets regular treatment.
Jennifer’s biological father, John Larsen, also suffered from lung disease. In his early 30’s John noticed he was getting out of breath fairly often and coughing a lot. He sought help from allergy specialists to no avail. He was finally referred to a pulmonary specialist and after many tests was diagnosed with Alpha-1; it was almost as a side note. The doctors didn’t tell him, or maybe didn’t know at the time (this was the late 1970’s), that it was hereditary. They did not impress upon him the importance of having his daughter tested. Nor did they really relate his severely damaged lungs to Alpha-1. All John and his family really knew was that Alpha-1 is an enzyme deficiency; sounded fairly innocuous at the time. He had a breathing machine that he used several times daily, which metered out dosages of prednisone. For the majority of his adult life John could not walk across a room without being severely winded. Imagine being in the prime of your life, having a young child and not being able to breathe, something so basic that so many people take for granted.
The good news of this entire story is that Jennifer was lucky enough to be diagnosed early and we have a great support team in place. The folks at Apha-1 Foundation & AlphaNet have been extremely helpful, not just after that initial diagnosis but have offered on-going support over the years. Jennifer is taking part in a study sponsored by AlphaNet that analyzes the affects of diet and exercise on those with lung disease. This has been a great motivating force for Jennifer to stay in shape! It also inspired us to come up with our “Commercial Workouts”. We decided that we sat around watching too much TV in the evenings so if that’s what we were going to do then every commercial we had to get up and do some sort of exercise. You can do sit ups, push ups or even yoga. Whatever floats your boat is fine just so you are up and exercising. I know, it sounds pretty easy but don’t laugh until you’ve “sat” through a couple of your favorite series. You don’t realize how many commercials there are until you’ve tried it. All that being said and the reason for this story is that I absolutely support my wife in all that she has gone through and will continue to go through. However I feel that there isn’t a lot I can do for her. Quite ironically I’m a runner and I decided to use what I can do to try to raise money for a cure and at the very least use my running to spread awareness of this disease and the importance of getting tested.
I will be running the Chevron Houston Marathon on January 15, 2012 to do just that. Please help us raise funds by visiting:
http://www.firstgiving.com/fundraiser/irunforalpha1/houstonmarathon
And “like” our Facebook page to help spread the word and to raise money for a cure.
I run for my best friend, “I Run for Alpha-1”