Friday, 18 September 2015

PHighter Friday: Alex

From left to right: Alex with her sister Debbie
I had already spent many years sick and in bed by the time I was diagnosed way back in 1998. I had delivered my third and final daughter, Luzy, in 1996. I was always exhausted- sleeping, anywhere from 18 to 22 hours a day. I would get up in the morning, make my kids breakfast, turn on the television, and fall asleep on the couch. I'd get up to make a quick lunch, send the kids outside to play with the neighbors, and fall asleep on the couch. I'd then get up to make dinner, wait for my daughter's father to get home from work, hand him the girls and say "I'm exhausted, I need to sleep," and I would sleep for the rest of the night. This went on for many months until I went to a psychiatrist's office, and told him what was going on. I had no idea where else to go, or what was going on. I explained that I had delivered my gorgeous baby. The first thing out of the doctor's mouth was postpartum depression (of course.) I was pumped full of antidepressants and started doing better, bit by bit, day by day. 

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.
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!  


  1. Thank you so much for sharing my story!!! Hardly feels like 18 years have passed already!

    1. Thank you for sharing :) I could not run this project without the help of other people like you!

  2. So lovely to,read your,story. We all have a story but most relate that nobody really listened till we were so much worse. We totally need doctors to listen to is as we, better than anyone else know our bodies. Thank goodness formrhemgreat ph teams we have, they are truly,amazing and life,saving. ,Thanks for sharing this xx

  3. thank you so much Carole!!! I enjoy telling my story not because I like to relive it, but to help someone who is going through the early stages of Pulmonary Hypertension. Thanks so much!!

    HUGS & Periwinkle Kisses

    1. I am waiting to be diagnosed and am so scared of an unknown future. While I lay here at 1am unable to sleep your stories have have helped more than you know. Thank you Alex and Serena

    2. I am sorry to hear about what you are going through Christine. I wish you nothing but the best of luck with everything. I am glad to hear that this has helped you.

      All the best xo

  4. Hi there! There are many ways to get support , online, on the phone in face to face support groups.
    ! I know waiting to find out if u have this or not is horrible!! Like I said I've had ph for 18 years and honestly with the right specialist on your side and the right treatment(s) doing their job(s) you can begin to feel better soon!! My thoughts and prayers are with you Christine!! U can find me and many other phers in FB.
    Hugs n Periwinkle Kisses