OUR JOURNEYS

Patient story

Katty Peraza

My name is Katty Peraza and this is my story!

Katty Peraza JourneyI was diagnosed with this rare scary illness back in May 3, 2013 called Idiopathic Primary Arterial Hypertension (IPAH). My first visit to the ER was a Union Hospital. Doctors said to my husband, "We need to transfer her to Salem Hospital."  I lost my life almost twice the night I was transferred, and then again the second night. I was in ICU for one week. The doctors and nurses wore very confused and did not know what was happening to me, all I knew was that they kept talking about the size of my heart. I had never been sick, being a runner, a super mom, and a wife taking care of my Hispanic parents. While in ICU people just prayed for me and went to pay their last respects. But I knew I was not going anywhere-- I was not going to die and give up on my children and my husband who had lost his mother one and a half years ago.

The tests-- oh dear Lord, the torture physical & emotional was unreal. I spent one week in ICU, one week in recovery, and then Salem Hospital was going to send me home on Coumadin and sildenafil. A few doctors just kept pushing for the hospital to transfer me to MGH, and that day of my release home they got a transfer for me to one of the best Pulmonary Teams at MGH. Without them I would have not made it two weeks. Per some doctors they stated I might have been sick for almost three years, as the right side of my heart was 5x larger than the normal.

The symptoms were creeping up on me; by November 2012, I was getting so tired and spent most of my time sleeping. This illness really crept up on me in the spring when I said to my hubby that I was really out of shape and needed his support to start walking then running again. So we started walking our dogs, but it only took my body 2 days before I could not sleep in my bed from a Monday walk. Tuesday I said "OMG Hun I can't go today." Wednesday was when my big dog Daisy helped me finish climbing a hill; I could not do it... the pain in my chest, I almost passed out! That night I left my room and use my recliner but could not sleep. I felt like a fish out of water gasping for air. By Thursday I said to my husband, "I look like I'm almost 6 months pregnant;" he was in shock. I refused to go to the hospital but by Friday morning my feet were like blueberries, they wore huge. I had full blown edema.

I went from 135 lbs the year before to 160 in March 2013 when I had a physical; everything was normal, with great numbers according to my doctor. I addressed my concern of my weight, and that I was not eating, but was gaining weight. I must have put on 30 more pounds by the time I was in the ICU room, as a team came in and said, "We are going to drain some fluid from your lungs!" I was like, "What?" Sure enough on my right side of my lung a liter of fluid was found. It must have been  there for maybe years. Also they had been talking about prior heart attacks? Sadly this was all to much for me to put together. This illness was something they had not seen in that hospital & so nurses & doctors wore puzzled!

I'm a mother of three with a very good supporting husband who is by my side 24/7. He never left my side. I'm currently on so manny medications it's like I have a pharmacy. My pharmacy is called Accredo so my meds come UPS. My primary medication for my PAH is Opsumit, 10mg once a day this is only an $8,300.00 monthly medication.~ Ventavis 6/7 times a day is only $22,000.00 monthly. Since I started working when I was 14, continued my studies and had a great job (and was a good employee), my Medicare benefits kicked in to cover all if these bills and hospital bills. We did have to pay thousands as well on hospital bills out of pocket, plus sidanafil 3x a day, Lasix 20mg once a day, potassium, Claritin, Vicodin 4 x a day, colonapin 2mg 3 x, iron, naproxen, dulcolax 3x a day & oxygen 2 liters at night.

I Just turned 39 in January; I own a two family home and have lived in the city of Lynn for 13 years now. I have three children; my oldest son is 22 and is the the army. For my 17-year-old who I'm so proud of, graphic & designing is her life. She wants to go to Sail University in Florida. She's class of 2016. And my 14-year-old, who is the daredevil of the family like his dad! He loves dirt bikes & thinks of it as a professional sport :) Cute. My doctors are at MGH. It feels like my second home!

I need to bring this to the media as there needs to be more awareness on PAH in this state and across the country. After someone dies of a heart attack due to right heart failure, it's too late! The symptoms are more of a depression, fatigue, and weight gain, & by the time one is diagnosed it is too late. In our state the cases are few; I mean it's so rare they say four or six out of a million will be diagnosed with this rare illness. But world wide we have reached over 30 million early diagnoses by raising awareness. Most diagnosed patients have an underlining condition; mine is Idiopathic (no known reason). I feel as a Hispanic mother and a Salem Native I can be a voice to Hispanics and young mothers out there, that they are not alone. We need to make sure doctors are more aware and Medical Schools teach this more to nursing students. I'm not a shy person; I'll do whatever possible to raise awareness.

One of my biggest concerns is that I don't know how long I'll be here because it could awake any underlying condition that doctors might not be able to treat due to the medications we are on. I've had three heart catheterizations on my neck to measure the pressures of my arteries; it is the only way to tell how your illness is progressing as there is no cure. I have the heart of an 85-year-old so just imagine: my diet sadly is all organic fresh produce nothing from a can as I'm not able to have sodium or have carbs and my liquid intake is a liter a day. You know ~ I would love to know, if PAH has such a huge awareness program my question is, why have we not brought topic to the FDA?! I mean with the food industry! Everything has sodium; at restaurants everything has been marinated or prepared to be served and is hard for families like mine to have dinner! I mean diabetics have their own foods, snacks, everywhere. I feel like we are not being even looked at as a group of individuals who need a diet without sodium. I know there are cookbooks about low sodium but what about when we don't have the energy to cook! Not even natural Kashi products are low in sodium. So sad. I'm determined to let my voice be heard. 

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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.