View Full Version : My story-life is too short, so smile and enjoy the journey

09-22-2011, 04:41 AM
Hi everyone! I wanted to share my story with you all in hopes to inspire anyone in need or to entertain who ever may be bored! I can't wait to start working with a lean bodies approved coach! Life is too short to not reach your fitness goals.
After having cardiac-related issues and seeing the Chief cardiologist for testing, on August 8th I was diagnosed with Pulmonary Hypertension. After diagnosis, I was told with PH you have 3-4 years to live without treatment. For those of you who don’t know about Pulmonary Hypertension it is an increased pressure in the pulmonary arteries. These arteries carry blood from your heart to your lungs to pick up oxygen. This makes it hard for your heart to push blood through your pulmonary arteries and into your lungs. As a result, the pressure in your arteries rises. Also, because your heart is working harder than normal, your right ventricle becomes strained and weak. Your heart may become so weak that it can't pump enough blood to your lungs. This causes heart failure. Heart failure is the most common cause of death in people who have PH. PH has no cure. As the first week went by after being told I had a terminal illness, many thoughts were going through my head, as you can imagine. I had to drop out of school which crushed me. I started planning my funeral at the young age of 27. I decided I wanted a celebration of my life, not a sad funeral. I wanted happy memories everywhere, with the song by Queen, “Another One Bites the Dust” playing in the background. I also started my will, trying to figure out who gets my awesome possessions such as my leopard carpet. The first week was very hard. I was not physically or emotionally able to get out of bed or put a single morsel of food into my body. I have never experienced such a deep, hopeless feeling before and I didn’t know how to handle it. I could not digest the fact that my life was being ripped from beneath me, what in my mind was decades before it should be. I had many life goals I was working towards, tons of dreams I knew I would one day accomplish. But one of the most difficult things for me was being told I will never be able to workout again or lift over 20 lbs. Now, you must understand, this was being told to a woman whose long time goal and motivation was working towards stepping on stage. It was also hard to leave the house anymore. I noticed the small little things in life that used to make me smile, like the morning dew on the blades of grass, glistening from the rising sun, or the sound of the birds singing in the afternoon shade, or hearing the giggles of little children playing in the parks. These didn’t make me smile anymore, but instead brought on an immense feeling of sadness. To know this is all being stolen from me was too much to bear. I didn’t have any faith or hope to hold onto. All of my friends and family I can’t thank enough. Those guys were always there for me to cheer me up, to remind me I’m not dead yet so I need to live it up, and also to help me do what I had forgotten how to, and that is to smile. It was those guys who would tell me the're praying for me and that God has a plan for me. Now, you have to understand it was so very difficult for me to have any faith as I didn’t grow up with religion in our home. In fact, I failed religion class in school and discovered in 10th grade that God and Jesus were two totally different people. I would sometimes get angry when people would tell me that God has a plan for me. I was thinking, “Yea, God is trying to kill me.” I started questioning my beliefs. I mean, I can’t go 20+ years not believing in anything (but myself) to all of a sudden being
terminally ill and praying to God to save me. If anything, I was mad, very mad.
I was angry that “God” or “Jesus” would do this to me. Did he choose me becauseI don’t believe? I tried praying once but felt silly. I had no idea what I wasdoing. I mean, do you ask questions? How do you greet him? Oh, man what if heresponds; I might crap myself. So, the praying wasn’t quite my gig... Yet. I instead started bargaining with God. I told him if he would heal me, I would follow one of my dreams and go to med school, spend all my time getting into stem cell research and devote all my life to find a cure for PH. As I entered the second week living with my new disease, and going through more medical testing, CT scan, MRI, and Pulmonary Functioning Test, I became part of a PH community. I went to PH meetings and I was part of a PH google group. I met the most amazingly brave people that suffer from this disease. I cannot describe the depth by which they embraced me with open arms, no judgment, but giving me a strong, soft shoulder to vent on, someone to finally understand what I was
going through. These people are one of a kind, and they brought me a sense of calm. It was these people that showed me I had to accept this disease and own it. It was at that point I had decided I could have my life, I just had to give up my old dreams and trade them for my new life, my new “normal”, with my new dream. Just one dream this time, a dream to keep raising money and awareness for Pulmonary Hypertension, a dream I will fight for till the day I die.
On Aug 24th I left for Mayo Clinic to finish up my last tests and get started on a treatment plan. I knew I had one last test, which was the right hearted catheter test. This was the one I was dreading. This is where the shove a catheter into your neck or groin and thread a wire to your heart. This enables them to get an accurate pressure reading and also see what medications you will respond best to. Well it was 7:45 in the morning and I first meet with Nathan, a PH specialist. He is probably the most gorgeous, tall, delicious doctor I’ve seen. In fact, I was sitting there looking him in his eyes as he’s saying something to me and all I was thinking at that moment was, “Eh, well if he tells me today is the day I’m going to die, at least I get to die with him being the last thing I look at.” So Nathan, or Doctor tall dark and handsome pulled up my echo that was done on my heart in St. Paul. He said it shows PH and my artery pressure is at 43. I asked what a normal pressure should be, and he said you want a pressure of 30 or below. He then informed me that since my pressure was on the lower end of PH, they wouldn’t even start treatment yet. “WHAT?!” So, Dr., you are telling me
you don’t start treatment until I’m half dead?? I didn’t say that but I sure was thinking it. He then informed me that he was going to send me for another echo since they do an echo that is more thorough and measures more in depth. He also said I would have it done twice by two different techs to double check the work. Oh, and more blood work. After doing the blood work and getting my two echos done, I met back with Dr. Tall, dark, and handsome, I mean Nathan. He pulled up the echo of my heart and said that there is fluid around my heart. He said it could be something simple like an infection, or it could be something serious such as heart disease and that they will probably want to drain the fluid (with a HUGE long needle) and do lab work on it. As I’m thinking, “Well this is going to be my new life, medical test, after medical test, this is my new norm”, he looked at me with the biggest smile and said, “Oh, and you don’t have Pulmonary Hypertension.” “Huh?!, did I just hear you right?.” He looked at my echo and said, “Yes, there is no sign of PH. Your pressures are 28 and your heart works great. BUT, we have to get you to the cardiologist ASAP for the fluid around the heart.” Alright am I dreaming? I sure hope not because then Dr. Tall, dark and handsome isn’t real and that would just be a shame. So, before I could crack a full smile of relief, I had to plan for the worse and realize, ok, so I am not going to die from PH, but I am going to die from heart disease.
After I gave more blood, got an EKG done, I was able to meet with the cardiologist. She pulled up my echo and said to me, “Everyone has a tiny bit of fluid around their heart.” She showed me my echo and pointed out the fluid. She then said “See, there is the fluid and you have just a tiny bit.” As I’m bracing myself for the bad news, she told me that there is nothing wrong with me! She said my heart works great, perfect, nothing wrong. My tricuspid valve leaks but barely. I was born with a heart murmur and it is so benign, it is nothing to worry about. I’m sitting there in absolute shock. My body is numb. In fact, I knew physically I was there, but mentally I was gone. What was happening was a total out-of-body experience that words cannot describe.
After keeping my calm, I told her my story. I told her how I went to the Chief cardiologist, and after he diagnosed me with Pulmonary Hypertension, his nurse looked at me and said, “Yup, it’s a tough pill to swallow,” and was then given a death sentence. I dropped out of school, became part of PH meetings and groups. She couldn’t believe it. She said she could just cry for me. And that was when I cried. This was real, this wasn’t a dream. I couldn’t believe it. As we all sit there in shock, she told me to come back in six months for another echo just to check up on the fluid around the heart. As I gathered up my jaw that had dropped on the floor, and began to leave her office, she stopped me, shook my hand and said, “Congratulations on getting your life back.”
The drive home was surreal. I have no explanation of why or how things happened the way they did. Everyone has their own beliefs. I have a belief
now, I have hope and I have faith. I pray for every one of you, and I pray for
the cure of Pulmonary Hypertension. I wanted to share my story, not for me, but for everyone else that may not have a hope to hold onto, or a
faith to believe in. I wanted to share this story for my friends&family. To anyone who is having a hard time in their life never give up.

09-22-2011, 12:59 PM
Wow chica! Unbelievable story. So glad to have you here. Welcome to the LBF boards :hug:

09-22-2011, 03:56 PM
Thanks Steph!

09-22-2011, 05:42 PM
Your story is incredible. I'm happy you're here.

09-22-2011, 05:57 PM
i've never liked the mayo clinic.. this just gives me another reason why. Im so glad you have another opinion but more so that you are FINE!