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

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Monica A. Sanchez - phaware® interview 238

Apr 16, 2019

Pulmonary hypertension patient, Monica A. Sanchez discusses her PH diagnosis, Graves' disease and hypothyroidism and how she advocates for herself.

My name's Monica Sanchez. I'm from La Puenta, California, and my connection with PH is I am a PH patient.

Recently with PH, I developed Graves’ disease and hypothyroidism. Been dealing with that about five years. A year ago it got really bad. We did a radiation pill and we hoped that that would end that. Unfortunately, six months later it all came back at 100% all over again. I did another iodine radiation pill, doubled the dosage, and the side effects were pretty hard this time. [My] throat swelled up, voice went out. I'm hoping that means it's killed the Graves’ disease and lowered the hypothyroidism.

With the hyperthyroidism, I started getting a lot of heart palpitations. At one point, it lasted for two minutes of my heart just having bad palpitations. My daughter could see my chest where it would go up and then it would stop and then it would go and then it would stop. I immediately called UCLA, the hotline, and luckily that night, it was Dr. David Ross who answered my call.

He was really concerned. He put me on a heart monitor. A couple days later, [he] took blood work and he calls me and he said, "It's your thyroid. It has shot up massively. We thought we had it under control. It's not. I need you to come into the hospital and be admitted or I need you to see your specialist right away." So, I went to go see my thyroid specialist two days later. They put me back on medication and everything  (because I had been good, so they had taken me off). I got put back on thyroid meds.

We checked every three months. I was going great, and then it all started again. I was losing my hair, fatigue. I'm 44 and I thought I was going through menopause, because I was having hot sweats. Nobody could talk to me. I would snap, and we realized the thyroid was acting up again. It's a gland in your neck that we need. It also was one of the reasons I was losing so much weight at the same time.

It's been 15 years this month when I was diagnosed in 2004. I was already diagnosed stage IV. My pressures were 125. I was put on two oral medications and a blood thinner, because I was also experiencing TIA, strokes in my brain, which was causing numbness. I was wondering what was going on with me. I was getting lightheaded. I was losing my vision. I was told I was overweight.

Then in 2004, I went in for a procedure. I was going to have a procedure done. I had a cyst on my ovary, and when they did all the exams, the EKG and the chest x-rays all came back abnormal, and that's when they told me I needed to see a cardiologist.

I saw the cardiologist in February of 2004. He turned around and he told me, "Oh," he goes, "you have a terminal illness. It's called pulmonary preliminary hypertension." And I was like, "Okay, what does that mean?" He goes, "You're going to die." He goes, "You got anywhere from three to five years, even with treatment, but I'm sending you to see a specialist at UCLA."

I didn't see Dr. David Ross until June of that year, so not knowing what this illness was, I tried to continue working. I was a preschool teacher. Unfortunately my doctor at the time, my primary doctor, told me I had to quit. There was just no way I could work. And then in June when I saw Dr. Ross and we did the tests, the right heart catheterization, it came back bad. It was idiopathic pulmonary hypertension. He started [me] on the medication, but he did tell me I had no expiration date. He kind of eased me on that. We've been dealing with that.

In 2008, he put me on Ventavis because my pressures were still not going down with the medications. Unfortunately, I didn't do very well on Ventavis. I was getting a lot of sore throats. It was just hard to deal with. My daughter, at the time she was dancing, so we had competitions, practices. To stop and take puffs of a medication, having people stare at you, it just wasn't for me either. I personally stopped, which I never recommend, and then three months later when I went to go see him, he asked me how I was doing. I told him I had stopped and my pressures had went up to 131.

I was put on the list for a transplant, heart and lung at the time. Then he had explained about the lovely Remodulin. He said, "I could put you on a subcutaneous Remodulin, because a pill's going to be coming out in a few months. And once the pill comes out, I'll take you off of that and we'll get you on the pill." And I was like, "Well, I don't know. I don't think so." He goes, "Either that or get your priorities in order and say your goodbyes to your family." He goes, "Because now I don't know how much longer you will have because of your pressures being so high," but at the same time I was feeling fine.

I was at dance competitions, Disneyland. I'm looking at him like, "What do you mean?” I could breathe. Yes, I get tired. And so, I got on subcu and nine years later I'm still on it. All the pills, unfortunately I was not able to get on because I was already in too high of a dosage on Remodulin. Right now, my goal is the implantable pump.

Some of my challenges I've had with PH was trying to deal with home life with the daughter, not working anymore. It was hard. In 2007, I had to move back with my parents. That was the challenging part for my daughter and I. I'm a very independent person and so I had to depend back on my parents, and that's where it was hard.

I had dizzy spells. I had breathing problems, making my bed, doing my laundry, so I understood how to go home, but I felt I'm going backwards instead of forwards with my illness. But then my dad told me, "Just go out there. Live. Don't let anything stop." I continued with my daughter dancing. My Sadie's my reason for living. She keeps me going. As soon as she sees me down, it's like, "Oh, Mom, we got to go shopping." And it's like, even though we don't buy anything, window shopping. Or I'm a big Disney fanatic. We have our passes. That's our getaway. That's a no sick zone. It's just get my walker and just go walk the park. Do a couple of rides and come home and deal with it.

I've learned in these last long years that we have the illness, but the illness doesn't have us. And if I'm going to sit at home thinking about it, then that's when it's going to eat me. But if I get up each day and say, "Hey, I'm breathing. I'm good. I'm going out," even if it's just to walk the dog or just to go in the living room and talk to my parents or meet up with my PH sisters and go out to lunch or to a movie, I know I have the support.

That's one of the main things with this illness is that you have the support of your family and your friends right behind you. Because if you don't, then it plays in your head, and all you're doing is sitting there thinking when's my day? Am I going to wake up tomorrow? It took me 15 years almost to actually accept having this illness. I used to wake up, "Why me? Why me?" Now I wake up and I say, "Why not me?" There's a reason and if I'm here for a reason, to find a cure, to be that test dummy with surveys or testing and all that, then I say bring it on, because I'd rather help somebody in the future know that you can get through this. Each and every day.

But step-by-step, listen to your body. Your body will tell you when you are tired. Your body will tell you when it's had enough. Don't ever push yourself. Because if you push yourself, you're only going to end up taking 10 steps back to try to get back to where you were in the beginning.

I really need to remember that what I'm telling somebody to assure them, to get them through the day is the same thing I live by each and every day, because I can't come and tell you, "Oh, you know what? Tomorrow's going to be a better day," and then I go in my room and I'm crying, saying, "Oh, my gosh, I don't want to see tomorrow."

I believe in when I say you could do this, it's because you can. With the whole thyroid, I learned how many people loved me actually, just my updates where I was getting personal messages of, "Oh, my gosh. You're my inspiration. I look up to you." I was like, "Whoa, me? Little me." And that really touched me that I could touch somebody else and let them know that yes, tomorrow is not guaranteed, but as long as you live your life each day like it is, then you have it. It's there. It's there for you.

You shouldn't give up. It's just another bump in the road. Like the thyroid, it's just another bump in the road. I joked with Sadie and I said, "Oh, it's just God saying I gave you 15 years with your PH. You're doing good, so let me throw a little boulder in the middle of the road and see if you could get around that one." And I'm doing it. It's just day-by-day, step-by-step, and not giving up on my faith.

You're your own advocate. When you go to your doctor's office, they say, "No, this isn't possible." Say, "You know what? It probably is." Because for me, I'm that one odd cookie in the cookie jar. They always say, "Oh, this isn't going to happen," and I'm the one to prove them wrong that it can happen or it can get better. I just say don't lose hope. There's hope out there. And eventually there'll be a cure. If not, just much, much better medications.

My name is Monica Sanchez, and I'm aware that I am rare.

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