I got diagnosed In July of 2009; by accident. I was under a lot of stress at my job and had developed ulcers. I went in to be scoped at the hospital and the anesthesiologist just happened to be a doctor.
During the procedure my oxygen dropped significantly. The
doctor came to the recovery room and expressed his concern about my
oxygen saturation. He recommended going to see my PCP right set. This set off a
chain of doctors etc.. I was being treated with Adcirca and Tracleer. For the next year that is all I was on and I was not getting any better.
I did some research on PH doctors and found the Cleveland clinic,
where I am from. It is noticed as being one of the best PH clinics in the country. I decided to move
back to Cleveland and seek treatment there. All of my family were there
too, so they could help me out as well.
I saw a specialist there and he wanted to do another ultrasound and right heart cath. I went in on a Thursday
in July for my heart cath. During the procedure the doctor called my PH doctor
to tell him my pressures. My PH doctor told them to immediately
admit me. I was a little nervous at this, but figured they were just
going to do some additional testing. As they were wheeling me to my room
I looked up. The floor I was being admitted too was heart failure ICU.
It was at that moment I knew this was serious and my life was about to
I ended up getting a Hickman line and Remodulin pump. I was in ICU for a week titrating up. A nurse from the drug company came to the hospital to teach me how to
use my pump. Unfortunately, I was too sick from the side effects to even
comprehend a little of what she was saying. I was absolutely devastated that I was going to be hooked up to a pump
for the rest of my life. All I could ever think about was all the things
I could never do again.
For the next six months I was miserable. The pain from the Remodulin was
intense, and no pain killer that was prescribed helped. I was terrified
to drive places in case I was in an accident. It took me forever to
change my bandage and mix my Remodulin. I figured I would be confined to
my house forever.
After many tries of pain killers I was prescribed Tramadol and that took
the pain away. This was the first sign of hope that my life was not
over. After feeling sorry for myself for a few months I decided that I was
not going to give up and that I needed to get my act in gear and stop
acting like a victim. It was hard at first, but everyday I pushed myself to increase my activity level and get out and spend time with other people.
I decided that I was going to enjoy every moment of my life and not look at life as what things I cannot do, but what I can do. I did not want people to look at me and see a sick person, but someone
who is a vibrant person. I used the motto " fake it, 'till you make it".
Today I know I am a miracle. When I was in ICU my PH doctor told me without
the pump I would probably not live more than a few weeks. It has been
almost six years now.When I see him he is continually amazed at how well I am doing. I know I have gotten better because of my attitude. I see the glass as full.
I am unable to work full time, but I went out and got a part time job. It gives me purpose and also gets me out of the house. I will never be able to run, but I can walk, so that's what I do everyday.
The side effects are still there, but they are not as bad as they used to be, so I am grateful. They are manageable.
Life on life's terms is an important mantra for me. I know I will have some days
that I really do not feel good, but I refuse to be depressed about how
my body is failing me. I look at it as this is my new "normal" and try to stay focused on the things I can do. Having PH has definitely changed how I look at life. I used to always look ahead or behind, never staying in the moment. One day at a
time, one moment at a time. Life is as good and as amazing as I let it be.
Today I am actually in the best shape that I have ever been in. I really
take care of my health, something I had always taken for granite. I surround myself will positive people, and people who do not see me as
"the sick girl". They do not coddle me or tell me I am too sick to do
something. They let me decide what I can and cannot do.PH has also taught me how to ask for help. In the beginning I needed
help around the house, cleaning etc...today I do not need any help, but
if I should need it, I can ask for it without making myself feel bad.
The list of all the positive things in my life could go on forever. The
most important one for me though is my positive out look on life.
Without that I am doomed. It is what gets me out of bed in the morning. I
look forward to each day.
I have PH, but I do not let it define me as a person.