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I'm Aware That I'm Rare: the phaware® podcast

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Tim Smith Transcript 107

Oct 31, 2017

Pulmonary hypertension patient, Tim Smith was diagnosed in October 2014.  On the third anniversary of his PH diagnosis, Tim shares his thoughts on clinical trials and getting the word out to help doctors and patients be more aware so that PH patients get diagnosed quicker.

I'm Tim Smith for Scottsdale, Arizona. I was diagnosed three years ago with pulmonary arterial hypertension.

Actually, I had a shortness of breath, I felt like someone was suffocating me and choking me. I kept going to the doctors for years and they always said it was asthma or COPD. I finally went to the hospital where they actually said that I needed psychiatric help, there was nothing wrong with me. They did an echocardiogram and noticed that my heart was enlarged and realized that I have pulmonary hypertension.

Actually, I knew something was wrong, I knew what I was capable of and I was having a hard time even just cutting the grass or just normal everyday things. Even working was difficult, so I knew something was up and I wasn't going to give up until they found it. The day the doctor told me I needed psychiatric help, he was in the room when the cardiologist walked in and said, "You have an enlarged heart, we think you have pulmonary hypertension." I was just relieved and of course I told him to tell that guy that.

I started with a different hospital treating me, they do the treatment but they didn't know how to treat it, if that makes sense? They actually had me on the wrong drug and my pressures went up. A few nurses told me to go see my doctor who I'm seeing currently in Phoenix.

Thank God I did and he's actually just changed my life. I'm on three different drugs now and I'm doing excellent. My pressures were 58 now I'm at 28. When I first got diagnosed I just went to some doctor who just treated the illness and I should've went to a specialist. That was my first mistake and anyone I find out, who just gets recently diagnosed, I always tell them, "Go to a specialist, don't go to someone who treats it."

First, I quit smoking the first day that they told me. Actually, I looked at support groups online on Facebook, and that was very helpful because I had no idea. When they told me I had pulmonary hypertension I was like, "Oh, thank God!" Because I thought, "Oh, I can just take a pill for it," not really realizing what it was. Then when I Googled it I was like, "Holy smokes!" I went into a panic mode for about a good six months.

I hadn't felt good for years and I would drink 10 to 15 Diet Cokes every morning because I had no energy and I just felt so horrible. Then at night, I would drink a bottle or two of wine at night because I felt so horrible, even though I was trying to make myself feel better. Then when I got diagnosed I stopped all that. They said about 40 pounds of my weight loss was fluids, I was retaining fluids and masking how I felt with Diet Coke and wine, so there was a lot of fluids on me. 

I started on a trial April in 2016. I found out he did them, my doctor did trial meds. I told him I'd be interested because I'll do anything to stay alive and well, do anything to get the pulmonary hypertension away from everybody and make life a little bit better. This trial drug I'm on actually really improved my life and gave me a lot of energy. They did a lot of tests, they restarted all my tests again with my lung capacity test. Ultrasound, right heart catheterization and a lot of blood work, and then I found out that I was eligible. 

It's an oral pill, you didn't know if you had the placebo or the regular pill for three months but apparently I had it, I got the regular pill. I started losing a lot, like 10 pounds a month. I'm almost to 100, I'm at 96 pounds now. They called me in the office, I'd go in every two to three weeks and they took my blood work and see how I'm doing. Actually, my six-minute walk test used to be around 1600, now, last week I had 2070 feet. I trusted my doctor, that I know he wouldn't give me something that would hurt me.

But yeah, on the first pill I was a little nervous, going, "Oh my God, what's going to happen to me?" Just wondering, "Am I going to drop dead, or what?"  I didn't know what was going to happen because you read all the risks and everything, but it was well worth the risks, best thing I've ever done. What I've learned the most is, I appreciate life more and I don't take it for granted. I actually am much happier than I've ever been since I've been diagnosed. I know that sounds weird but yeah, I've been much happier.

Actually, it's amazing. I wait on tables part-time, I waited on two nurses yesterday. I said, "Oh, I have pulmonary hypertension!" They go, "Oh, just take a pill for it and if you drink Scotch you'll be fine, it's no big deal." I'm like, they didn't even know what it was actually, so I educated them and they were both RNs. They didn't even know what pulmonary hypertension was, they thought I had high blood pressure, which is actually what I thought at first also.

If I was newly diagnosed and I had any advice for a patient it would be see a specialist immediately, don't wait and don't listen to any other doctor but a specialist at first. He will get you on the right track and when you get better, and you feel back to your old self, try a trial med and see what you can do for pulmonary hypertension.

My name is Tim Smith and I'm aware that I'm rare. 

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