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!  

Wednesday, 9 September 2015

Warrior Wednesday (from PH Positive Vibes)

I was asked by Evelyn (click here to see her previous PHighter Friday entry) to write a bit about myself for a PH Instagram account that she runs called PH_postivevibes.

Her Instagram shares inspirational quotes, stories from other people with PH, along with healthy recipes and tips. I thought I would share the post she asked me to write for a segment she runs called Warrior Wednesday, in which a person with PH shares a little about themselves.

Please follow PH_postivevibes on Instagram to find more Warrior Wednesday posts, along with daily motivation!

Warrior Wednesday

I was diagnosed with stage 3/stage 4 IPAH on Christmas Ev 2013 after a RHC. There was no question about it, I was dying. If I wasn’t diagnosed when I was I probably wouldn’t have survived through the month. Within a matter of 3 months I went from a healthy 25 year old who had started an amazing job managing an office at a university, to someone who was bed ridden.

At the busy bakery I worked
at before I got sick
Before I was diagnosed I was very active. Months prior I worked at the busiest bakery in town lifting heavy boxes of supplies up a big stair case. I traveled to Montreal for work and wondered around the city for hours after my training. I worked out for 30 minutes after work, and walked to the closest coffee shop on my breaks. I could also manage to catch the 5:05 pm bus with some light jogging. Around October I noticed that I started having trouble with all these activities. By December it felt pretty much “game over” for me.

I was sick, disabled, and I was on oxygen 24/7. I could no longer get dressed by myself, make my bed, or shower. My dad would have to carry me up the stairs in our house. My independence and my ability to be active were gone. I was devastated (I guess I still am,) and I was angry. However, I knew that there are exceptions to everything. I also know how flawed statistics are. So I allowed my anger to ignite me in positive ways. I brushed the dust of my Wii Fit and started doing yoga as soon I was able to stand again. I did this everyday for 5 minutes, then 10, then 20. Once it got too easy I would move on to something else. Now I can do those simple yoga moves without oxygen- it’s amazing to think that I used to have to do it on 4 liters of oxygen per minute.

Once I felt brave enough I joined some online PH support groups. I noticed that there were people who have had PH for over 10-20+ years and were still going strong. I thought “Wait a second- my doctors and Google didn’t tell me about these people!” I soon thought that these kind of stories and information should be available. From there I started my blog ‘The PHight or Flight Project.’ There is a segment on my blog called ‘PHighter Friday’ where someone with PH talks about their life after diagnosis. There are over 50+ stories from people with PH who have beaten all sorts of statistical odds, such as being a long term survivor, adopting, returning to work, participating in marathons, and improving dramatically after diagnosis.

Baking for the first time since diagnosis (over a year and half later.)
I now only eat and bake gluten free items.
I receive messages from people that are newly diagnosed with PH who are glad they found the blog. One person said they found the blog while they were in the ICU after they just got diagnosed. They sent me an e-mailing explaining how the stories on the blog helped them to hold onto hope. Receiving messages like that is my main inspiration to try and keep the blog going. I think that so many people with PH are willing and happy to contribute their inspiring story to the blog because they know how important hearing these kind of stories are for hope after diagnosis.