 |
| From left to right: Alex with her sister Debbie |
After
my ex husband got out of the military we moved to Texas, where I began
passing out. I was just getting out of the shower the first time (that I know of) when I passed out due to
Pulmonary Hypertension. I stepped
out into the hallway, walked towards my bedroom. The next thing I
remember was being woken up by paramedics. Apparently when I fell I
hit my head against a wine fridge that was stored just outside the
bedroom. We were living in my former husband's mother's home at the
time. When I was found I was the paramedics were called. They checked my blood pressure and pulse, and
said that everything was fine but suggested I go to the emergency room just
in case. I did not have insurance and declined because I was afraid of the cost of going to the
E.R, and riding in an ambulance.
I had all but forgotten the fainting spell I had until a few weeks later I passed out again. This time my late sister, Susan, was visiting us from Southern California. We were playing chase around the house with my youngest daughter, Luzy. She was just under two years old, and was having such fun playing and running around the huge yard. I sat on the steps in front of the home and said "I'm tired..." The next sound my family heard from me was head hitting the cement steps, and sliding down several steps from the top. Emergency was called again, and I declined help.
I passed out in total at least 30 times in a three month period. I couldn't bend down to; clean up, tie my shoes, pick up one of my daughters, without getting short of breathe and passing out. I could no longer walk from my from front door to the car, without having to stop at the top of the steps to catch my breathe. Walking to the bathroom or the kitchen from the less than one thousand square foot home, would wear me out nearly completely. My oldest daughter had to take care of her sisters because I certainly couldn't. My daughter's father was working far away, and would come home on the weekends. Even seeing how sick I was, he refused to try to transfer to a prison less than 15 minutes from home. His mother refused to help as well saying it was all in my head, and I that better snap out of it. She had been told about being me diagnosed with postpartum depression and decided that I was just depressed. My family was in Southern California, where I was born and raised.
I had all but forgotten the fainting spell I had until a few weeks later I passed out again. This time my late sister, Susan, was visiting us from Southern California. We were playing chase around the house with my youngest daughter, Luzy. She was just under two years old, and was having such fun playing and running around the huge yard. I sat on the steps in front of the home and said "I'm tired..." The next sound my family heard from me was head hitting the cement steps, and sliding down several steps from the top. Emergency was called again, and I declined help.
I passed out in total at least 30 times in a three month period. I couldn't bend down to; clean up, tie my shoes, pick up one of my daughters, without getting short of breathe and passing out. I could no longer walk from my from front door to the car, without having to stop at the top of the steps to catch my breathe. Walking to the bathroom or the kitchen from the less than one thousand square foot home, would wear me out nearly completely. My oldest daughter had to take care of her sisters because I certainly couldn't. My daughter's father was working far away, and would come home on the weekends. Even seeing how sick I was, he refused to try to transfer to a prison less than 15 minutes from home. His mother refused to help as well saying it was all in my head, and I that better snap out of it. She had been told about being me diagnosed with postpartum depression and decided that I was just depressed. My family was in Southern California, where I was born and raised.
Finally,
my sister Debbie Drell came to visit. She saw me pass out, and have a
grand mal seizure (I had several before the time before I was
diagnosed.) I had told her of all the times I had gone in to see the
doctor after I had passed out. This doctor always
refused to do any testing or blood work. He just kept upping my dose of Prozac. It wasn't until Debbie saw me pass out that she made my former
husband go with my to speak to the doctors. Luckily, the medical
professional I regularly saw wasn't in that day. We saw a
different doctor, who, once listening to my symptoms, listening to my
heart and lungs, said to me, "This is not in your head. This is in your
heart!" I was immediately sent for an echo-cardiogram, a
type of ultrasound test to the heart. The next day I went in to work
and called as soon as the office opened. The conversation that took
place I remember as if it happened yesterday, but in fact, it took place
18 years ago!
"Mrs Flipse, you need to come in right away" said the nurse. "But I'm at work. Can I come in tomorrow?" I asked. "No, the doctor needs to see you today." Knowing the test was of my heart, I had to ask the nurse on the line "Am I ok? What did the test say?" to which her response was: "You're
standing aren't you?" When I hung up, I went to my boss and I said that something was wrong with my heart. I had to go see my doctor right
away. My boss didn't want to let me go until my lunch hour, but I knew I
had to leave right away. I never returned back to work at that place.
I
asked my ex mother-in-law to come with me to the appointment at the
cardiologist. She came certain that she could
chastise me after, expecting that there was nothing wrong with me. We didn't wait
long at all for the cardiologist, they were expecting me. He told me
that I had a terminal disease called Primary Pulmonary Hypertension. My ex
mother-in-law asked him how long I had to live. The doctor stated
that I had less than two years. He said I was pretty severe and my heart
was very enlarged. After that, I had no idea what else was said.
Right before leaving the room, the doctor kneeled beside me, putting
his hand on my knee saying, "if I do one thing, I had to remember the
word prostacyclin." He said it would save my life. I left the hospital
dumbfounded. Sobbing in the car ride back all I could think was what about
my girls? What about my husband? His mother said to me "Buck up. You
can't cry. Grow up." I sat straight up and did not say another word the
rest of the day.
I was
referred to see the Pulmonary Hypertension specialist in Houston Texas,
which was a four hour drive each way. I woke up attached to Flolan after my very first Right Heart
Catheterization. I stayed on Flolan for
four years, and transitioned to Tracleer as soon as it became
available on the market. I was transitioned off of Tracleer and onto
Sildenafil after my latest Right Heart Cath, which showed that I also have
Pulmonary Venous Hypertension.
Over
the years I have learned several things, and I would like to share a
few of them with you, Please. keep in mind, that even though I have
learned these things, it is very very hard to do them!!
1.
Advocate for yourself! I can advocate for anyone else on this planet,
and do it running circles around everyone. However I can still not advocate for myself. Since I know that I cannot, I always have a member of my
family with me when I go to see the doctors, or have an emergency room
visit. If I feel like I won't need to speak up for myself, I go alone
and take notes, or record audio of the visit.
2.
Take notes at your appointments, and always go in with questions or
comments about your condition, or things you don't want to forget. This
is so important for me because I forget so quickly! While
I'm taking notes, I miss out on something important, so after having
asked permission, I record the entire appointment with the doctor.
4.
Keep a list of all your doctors and their phone numbers in a wallet or
purse. I also keep the list in my phone. I keep this information in my
name in my contact list.
5.
Keep a list of diagnoses, who treats that condition, and the
medications, with dosage, in the wallet or purse. This is also on my
phone. I even have my over the counter meds listed as well (like vitamins,
tylenol, etc.)
6. Keep
yourself busy. I don't ever just sit and stare into space, or sleep the
day away, unless my body needs it. If I do, I'm in depression, and know
that I need to do whatever I can to get myself out of depression. I was
diagnosed with clinical depression when I was 18, but have had it since
at least five years of age. I keep busy by doing things I enjoy- like
crafting, cooking, playing with my granddaughter, watching movies on Netflix and listening to music, Facebooking and of course raising
awareness!
and lastly but not least in the bunch:
7.
Exercise. When I was diagnosed back in 1998 I was told not to do any
exercising at all. Cardio was completely out of the question because I
didn't want to overwork my heart. After many years of studies researchers and PH specialists are finding that we do need to exercise! Exercising is something that I rarely do, but I know that I should exercise. Unfortunately, getting out
of the apartment for more than a few minutes is very taxing on me. However, when I do manage to get out and exercise I really enjoy myself!
