Patient story

Larry Bush

"He told me I had pulmonary hypertension. I had no clue what that meant. Then he explained to me that it was a terminal lung disease with no cure. I asked this doctor if there were any support groups. I was shocked when his response was no, everyone who has this disease is already DEAD! It made me nervous."

Hello, my name is Larry. I've been married for over 35 years and I have two beautiful daughters. They both have their Master’s Degrees in special needs Elementary Education. My oldest daughter is in her 12th year teaching and my youngest daughter is in her 2nd year, and my oldest daughter has two handsome sons.

My story is a lot different than most. I got injured at work on May 10th, 1985. I had seven back operations, have had five trips to ICU with pneumonia- one was a bacterial pneumonia. I have had many operations due to this accident.

On one of my trips to the hospital with pneumonia, the doctor treating me said I had COPD. He put me on oxygen and was treating me for that for about a year. Then the first pulmonary specialist came back from his 13 month vacation where he sailed around the world in his yacht (must be nice). Well he ran some tests and had me in his office several weeks after being released from the hospital Sept. 2008. He told me I had pulmonary hypertension. I had no clue what that meant. Then he explained to me that it was a terminal lung disease with no cure. He put me on Tracleer after six or seven months. It didn't help me at all. I asked this doctor if there were any support groups. I was shocked when his response was no, everyone who has this disease is already DEAD! This really made me nervous. Then he told me they found out too late and there was nothing else he could do. Then he told me, don't worry, you will probably die in your sleep. At that time I was on 22 medications a day. He put me on home hospice. This really made me nervous. I stopped taking all my medications and took an overdose of sleeping pills, but all that did was make me sleep for two days. At that time my weight was 220lbs and in three months my weight went down to 160lbs. Two months later I was showing signs of some improvement, so they took me off of home hospice and put me on home nursing care.

Then my primary doctor put me on the medications I really needed to be on and found another pulmonary hypertension specialist. This doctor was very nice. He tried me on Revatio. After three months he took me off, but I was in and out of the hospital several times and not getting that medication while in the hospital. But after running more tests he saw no improvements, so he tried me on Ventavis. After just five weeks it was making me sick so he stopped it and told my wife that they found it too late and he didn't think any medication would help me at that point, but he explained without medication a person with this disease could live 3-5 years, not as rude as the first doctor was.

Then in the end of 2010 my problems started. I was getting UTIs about once a month and in and out of the hospital about 6-8 times a year. I was getting severe pain in the flank area on the right side of my back. The doctors and my home nurses kept saying it was all from my back operations, but after having seven back operations I knew the pain wasn't the same. That's when my urologist wanted to run some tests and he told me it was just as he expected it to be: my urethra in my right kidney had a pinched section about 3 inches, so he said he wanted to try and put in a stent and a nerphrostomy tube and let it drain into a leg bag. I agreed. But the stent kept getting clogged and instead of changing it every three months they had to change it sometimes after just a week. Then I started getting really sick with these UTIs , that they sent in an infectious disease doctor in Dec 2011. I was put back on home hospice for the second time. My blood pressure kept dropping very low and my O2 was down in the low 70's-high 60's. That's when the infectious disease doctor said I could die from septic poisoning if I didn't get that kidney out. My urologist sent me to see a doctor who could do the operation. I met him in July 2012 and he said he'd do the operation if I got clearance from a pulmonary specialist. So I met with that doctor. The first thing he did was give me a flu shot. Right then I knew he cared about his patients. He first had me do the six minute walk test, so I went for it. I was only able to walk four minutes, 300 feet, and my O2 went down to 87% so he sent me home and had me go back in 3 weeks for a right-heart cath. I have had three before that were all done through my groin. This doctor had this one through my neck, in the ICU and three days after the heart cath he sent me down to have a hickman cath and I was started on Remodulin. When I came home for the first two weeks they had a nurse come to my house to teach me how to mix the medication. After two weeks they told me I was on my own. After just seven weeks on the Remodulin the doctor had me do the six minute walk again. This time I walked six minutes, walked 900 feet and my O2 dropped down to 91%. He was very impressed and added Revatio to my medications . That was in Oct. 2012 and in Jan. 2013, the urologist said he'd do this operation. Now just four weeks after getting my kidney removed, my oxygen went from being on 6 liters down to 2.5 liters, and I haven't felt this good in many, many years. Thank you all and GOD BLESS and keep praying for a cure..



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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.