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Patient story

Cheryl Guillory

Hello, my name is Cheryl Guillory. I am a 38 year old wife and mother of three. My husband, Michael, and I have been married for almost 12 years. He is the rock and support of my life and I could not do this without him. This is my story.

When I was in the seventh grade over 27 years ago, I had a bout of "walking pneumonia." After that episode I became very prone to upper respiratory infections and was diagnosed with asthma. I was given a multitude of inhalers and pills for asthma and allergies over the years.

I was always a heavy girl. I remember being teased even in grade school because my mother bought me a pair of paints with little blue whales on them. "I loved those pants!" I always cried and my parents always supported me, I guess they felt responsible for my heaviness and weakness with food. I did love my food, almost as much as I loved those pants. My sister and I were always encouraged to clean our plates and not waste food, yet she stayed skinny as a rail. Being eight and a half years older, she was resentful of me because my mother always made her let me tag along. But what she did not realize was that she was my idol. We never were very close, always fighting and acting just like sisters.

As I grew older I also grew bigger, graduating high school at a whopping 250 lbs. in 1989. Then I went to nursing school at our local college here now named University of Louisiana at Lafayette. There, I struggled to stay up with my studies as I was constantly sleepy. My parents blamed it on being lazy. My first year was paid for by my parents, but when I did not perform as they thought I should, my tuition was cut off and I had to pay my own way. I babysat all summer long just to come up with enough money to pay for my third semester. Midway through the semester, a faculty adviser encouraged me to find another degree of study to follow because at my weight she did not see me being able to withstand the long hours on my feet as a nurse. This was the only thing besides babysitting that I had ever wanted to do in my life. So, ashamed that "I was too fat to be a nurse," I caved and dropped out of school. I was too ashamed to tell my parents, and since I had paid the tuition with my own monies, I felt it was none of their business.

So I got another job and saved up more money and was eventually accepted into the Practical Nursing Program at a local Hospital. I was never happier. No one ever made me feel like I could not be a nurse because of my weight, but it came close academically due to my struggles with mathematics. In September, 1992 I graduated from nursing school and by that November I had my first real nursing job, at another of our city’s local hospitals. All the while I was battling with "asthma" and upper respiratory infections and continuing to gain weight.

In March, 1997 I married the love of my life. We were eager to have children, but to no avail. We were constantly let down month after month. I was depressed and even on the verge of suicide on occasion. I was always keeping my feelings on my shoulders waiting for someone to knock it off so I would have a scapegoat for my wrath. Doctor after doctor told me there was no physical reason for me not getting pregnant except for my weight, which by now has topped 300 lbs. Then my dad heard of PCOS (polycystic ovarian syndrome). He had seen a story on it and said it sounded just like me. I was never officially diagnosed, but after multiple failed infertility treatments, we were encouraged to stop because of the cost. We were very young and just starting out and did not have the finances to continue on that route.

In 2002, Michael and I were certified as foster/adoptive parents in the state of Louisiana, and pursued a fostering of our first child, Andrew, in September, 2002 at the age of 13 months. One month later, I had a Roux-en-Y gastric bypass. My weight had topped 372 lbs. I lost a total of 210 lbs in just over nine months. Then I found out that by the grace of God I was not infertile and we conceived our first biological daughter.

Madysen was born in April, 2004. Four months later our second biological daughter Hannah was conceived and then born in April, 2005, exactly one year and 13 days after Madysen. Both pregnancies were relatively uneventful; my blood pressures were good throughout. But I always had to have a rescue inhaler on hand. I had never felt better about myself, losing all that weight, adopting a very special son, and giving birth to two beautiful daughters, but all the while I was still struggling for a breath of air.

In May of 2007, I had an outpatient procedure and was feeling very well. About five weeks after the procedure, I began to retain more and more fluid in my face feet and hands. I was having increasing difficulties breathing. I had been back to the doctor several times and he thought I was having a reaction to the pain medicine, so we changed it. Then I began passing out for no reason, something I had never done before in my life. This scared me and my husband. I went back to the doctor as a last ditch effort and when he got there he was so freaked out that he immediately sent me to my family doctor and cardiologist. They did an EKG and thought that I was having a pulmonary embolism. They did test after test and found nothing. The PE was eventually ruled out and I was given more inhalers and pills. Then they told me that if things got any worse, I should go to the ER immediately.

That Thursday night I didn’t sleep because my heart rate was in the 130-140 range constantly. Friday morning, when the doctor’s office opened, I called and told the nurse what was going on. She told me to go to the ER immediately. I was helping out my sister's oldest daughter, who was at the time 18 years old and seven months pregnant. I was in nursing mode, but not for myself. When we were finished at her appointment, I went home and then Michael and I proceeded to the ER. Once there, they put me through the ringer of tests, but it was Friday afternoon and all of the technicians for the echocardiogram they wanted to do had gone for the weekend. They would have to admit me to the hospital and call the on-call tech. This was about four o'clock in the afternoon. Once I made it to the room, they finally came in to do the Echo. Immediately the tech said, "you are a nurse, right?" I replied that indeed I was a nurse and proceeded to ask what was wrong. He then looked at me and said "you have TVR, and pulmonary hypertension."

I knew what TVR was but had never in almost 15 years as a nurse heard of pulmonary hypertension. Tricuspid valve regurgitation (TVR) was the least of my concerns after the doctor finally came in and said my lung pressures were 90-100, well above the expected 20-35 they usually see. He said that I was in advanced pulmonary hypertension and right heart failure. They gave me a prescription for Revatio and follow-up appointments with my actual cardiologist and pulmonologist, and discharged me on Sunday afternoon May 20, 2007.

We went to the pharmacy on the way home and to our astonishment were told that it would take three to four days to get clearance for them to order the drug because it cost about $2,500 for just 15 pills. I freaked out. How were we supposed to afford medication like this? Our insurance policy would not cover it because they still considered it experimental, even though the FDA had approved it for the treatment of PH. Then on Monday I called the pulmonologist and he said, "We’ll just change the prescription to Viagra, it has the same components that you need in the medication Revatio." Little did we know that the insurance company would not pay for the Viagra either. I guess they thought I was going to give it to my husband!

Well, we finally got the insurance company to pay a portion of the cost, and I finally went to the cardiologist. He looked at all the tests done at the hospital the previous weekend and agreed that it was in fact PH. He then proceeded to tell me and my sister—who had come along for the ride—that he could not treat me. I would have to make either a three hour trip to Houston, Texas or Shreveport, LA, or I could go "just" two and a half hours to New Orleans, LA. Now let’s not forget that New Orleans is still recovering from Hurricane Katrina, and I had not personally been there since 2001. But the horror stories we heard about it did not deter me. I chose Ochsner Hospital's Multi Organ Cardio/Pulmonary Transplant Clinic.

Our first appointment was not very promising. The doctor seemed very eccentric, and had an accent which made it so that we could barely understand him. He was also in an extreme hurry. The prognosis: go home and come back in a month and we will do some more testing and don't forget to take the medication they gave you at home. I proceeded to tell the nurse that the insurance company would not pay for the Revatio, and the Viagra was almost as expensive. She said, "oh don't worry about it, we'll call your insurance company and set everything up." Before we could even get home, I had a prescription waiting for me at the pharmacy, and home oxygen service had been arranged. I started to let my guard down just a bit. But soon my husband and I felt another blow when we found out that none of the doctors here wanted to help us.

In February, 2008, I had a really hard time breathing and walking. They admitted me to the hospital in New Orleans this time. I spent a week there. I then started a new and fabulous PH drug called Ventavis. I started it and thought that was it I would be ok. This was not the case, as I developed mouth sores from the medication being inhaled. I could hardly eat, unless I first took a special mouth wash to numb my tongue.

Then I met all these wonderful people on the PHA website and heard about the 2008 conference. This conference was the turning point in my life when I turned from a PH patient to a PH Advocate. I told my doctor I wanted to try a different approach to the treatment and volunteered to start subcutaneous Remodulin and oral Letairis. The Remodulin was very hard on me because I'm really a scaredy-cat at heart. I might be a nurse by profession, but I'm a horrible patient when it comes to needles. But with the encouragement of my sister, Gayle, who, by the way, quit her job to help me, I built up the courage to go through with the treatment.

She and my husband, Michael, were right there by my side when I started my first site. Things were looking good again. In July I had another setback, when a syncope episode caused me to fall and literally break my face. Oh what a sight to see! I continued the multitude of medications, including the Remodulin, Letairis and Revatio.

In August, I was so fired up that I started the only other support group chapter in the state of Louisiana. I've never experienced the support of so many people, especially my family. But let’s not forget the reps, Sherrie Sterling and the PHA! It was a lot easier than I had expected, yet still one of the hardest things I'd ever had to conquer. Well, we've had two meetings so far and only two members besides me and a multitude of family members. We are scheduled to have another one in February 2009.

On the week of Halloween, I went for a routine check up in New Orleans—you know the drill—a six minute walk, an echo, lab work etc. I could not even finish the walk and was completely dependent on my oxygen. Bam—instant hospitalization again. I developed a staph infection from my Remodulin site and was over-vasodilated. I spent another week in the hospital, with another multitude of tests. I was finally released, and was taken off of the Remodulin, and increased the Letairis.

Now after two years of fighting this battle I finally feel almost human again. I haven't used my oxygen now for over three months, and the medications I currently take are apparently doing their job. I still can't run a marathon, but at least I can still go shopping! Through my faith, my strength and the encouragement of all of my family and friends, I'm going to do all I can do to beat the odds and survive this horrible disease. Good luck and best wishes to all. You can find my support group on the PHA website. Feel free to contact me anytime. I love to talk and I love to help others. If ever there is anything I can do, I will do my best. God Bless!

 

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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.