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

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Beth Decristofaro - phaware® interview 187

Sep 7, 2018

Beth DeCristofaro is a pulmonary hypertension patient from Virginia. She discusses her diagnosis and involvement in clinical trial research. Beth is a married mother of two, and a former Hospice Chaplain. 

I'm Beth Decristofaro, and I have idiopathic pulmonary arterial hypertension.  I was diagnosed in October of 2017.

I actually was on vacation, had, looking back, what was a crisis because I didn't have many symptoms before that. In hindsight, I recognize now some of them, but I was functioning, working full-time. I was diagnosed after going to an ER short of breath, barely able to walk, feeling horrible, and the ER doctor said, "We've called in the cardiologist because we have no idea what's going on with you." That weekend, I was diagnosed. Within about four weeks, I was on an IV and an oral med. I had originally been put on two orals, but did not respond well, and so my PH specialist said, "The IV is the way to go." I've been on that since and responded very well, so they were right.

I was diagnosed really quickly, and I know that's unusual for this disease. It came out of the blue in many ways. I had noticed about six months before that I was having trouble walking up the stairs, but I figured I was out of shape. So, I did not even really understand when I was first told what it was. I think I just knew that this was pretty serious, and so what do we do next? It was later when I got to an excellent PH specialist cardiologist that it began to sink in. I had been in pretty severe heart failure. Then it began to hit me like a ton of bricks. What does this mean? Do I, in fact, have a real life-limited type of a diagnosis now? My family and I kind of began to look at that and say, "What do we need to do?"

What was interesting is as I was beginning to understand and realize the limitations, I began to also respond quickly to the medicines. It was always a, oh my goodness, I'm living every day with my mortality in a way I had never done before, but on the other hand, I knew I was being helped, and so it was sort of this astounding off balance feeling for a very, very long time. I was put on the IV therapy in end of October, and I think it was probably the end of March, beginning of April, that my own doctor said, "Hey, would you be interested at all in being part of a clinical trial?" Then it was April and May that I got involved in it. It's been better. I've had a better response for me, personally, than I ever expected, which is just amazing.

My background has been in healthcare for many years, so I was always open to that idea, but didn't really realize you could do that as an active patient. I am on a trial that is a small phase one trial, and it's called ABI-009 for Patients with Severe Pulmonary Arterial Hypertension. It is an interesting trial because this drug is already FDA approved. It's an immunosuppressant that's been used for years for transplantation patients. They're looking at what immunosuppressant properties might also be appropriate for PAH. They are finding certain similarities, and this also has to do with inflammation in the arteries, so it's a very small trial. There's no placebo. We all know we're getting this particular drug. I think it's really sort of sped up my positive response. I'm seeing a big difference in my own health.

My overall feeling about clinical trials is that they're absolutely necessary. I had never bothered looking into one very closely. When I received the information, and they give you copious amounts of information and spend a lot of time explaining the process and answering questions, I did really want to hear what the risks were versus the potential outcomes. I was willing to settle for a neutral outcome for me, quite honest, but I also didn't want to put my own health at risk, mainly thinking of my family and my responsibilities. In this case, I felt that the risks absolutely were not so overwhelming. It was worth doing.

And, another big factor for me is not only is my own doctor one of the researchers in this trial, but I live close enough that going once a week, or even multiple times a week, because that has happened, too, was not completely out of possibility for me. In fact, it was a little bit of reward in that I did have to quit my job, due to the PH, and so here I could give back a little bit in a way that I hadn't been able to do since I was no longer working. So, it didn't take a lot for me, but I did research it pretty thoroughly to say, "Absolutely, let's go ahead and let's do this."

This particular trial I'm on is 17 weeks long, which counts pre-tests and post-tests. One of the advantages, in my opinion, is you get to see a doctor every single week. I have had an echo done every four weeks and lab works consistently. In order to start, I did have to have a right heart catheterization and will have one at the end, but that's okay for me if they're showing me what my pressures are doing. Lots of blood sticks, but that's okay. We can handle those. There is a stipend that I get every time I go in and that helps defray costs, parking and what have you.

I will be finishing up now in three weeks. Again, that battery of tests is the very final week, and then I'll be able to also get that wrap up summary from the researcher, who is my own doctor. And so again, I find that to be a real plus for anyone who is able and willing to do clinical trials, is the close monitoring, not only of what's happening positive, but absolutely if there's any side effects or concerns, they ask you about it and monitor those. Any time you want to back out, you can do that, too, but I have not been tempted in the least.

If you're considering thinking about or wondering about clinical trials, I would say start with your own doctor. What does he or she know about it? And help you begin to think about what might be in your best interest, but also what are promising avenues, and then look carefully. Look carefully at the risks, but also look at the benefits. I, personally, have had no complaints and feel like it's a chance to do a little something for the people coming after me, because frankly, I'm where I am doing so well because of the people who came before me.

As you consider, of course, there is the federal website, but also phaware global association now has a matching tool (www.phaware.global/clinicaltrials), that you can plug in where you are and what are some specifics. There are questions that you answer about your own PH situation. Trials will come up in your area that you are probably eligible for, and you can even do some research right on there. Does anything look interesting? Anything look promising? That kind of easy way to get in the process is something you could do today.

I'm Beth Decristofaro, and I'm aware that I'm rare.

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