* 23 year old
* Mother of a 2 year old daughter
* Wife of an amazing husband
* Former Medical Student
* Fighting for my life due to a disease that affects 1 out of 1 million people and has no known cause.

I have never voted for a president, based on their political party association, or status. I vote for who I believe truly stands for the most important issue, which to me is health. I voted for Obama, for many reasons, but most importantly because he seems and is proving to be one of the most sincere and genuine presidents I have ever witnessed in my lifetime. My second main reason for voting for President Barack Obama was that he stood for improving health care issues in the United States. It is my opinion, as well as my personal experience that until your health is declining, or is suddenly bad, that most people take their health for granted. Without health, one has nothing. You may have billions of dollars, and the nicest beach side luxurious property imaginable, but it means nothing if you can't enjoy it.

When I graduated high school, I was full of curiosity, excitement, and a little bit of anxiety as far as finding an answer to the big question of "what's next"? I knew that It would be wise of me to attend college, but was unsure of what I wanted to spend the rest of my life doing. I have always known that no matter what I chose, I wanted to be able to go home from work knowing that in some way I had made a difference in the world.

I attended college for 3 semesters, taking general courses that would be needed for any major I might choose in the future. Towards the end of my third semester I found out that I was 3 months pregnant. I attended school for one more semester and by the end of it I was 8 and 1/2 months pregnant.

During my pregnancy, I became very interested in learning as much as I could about taking care of my soon to be daughter, while she was in the womb, and after I gave birth to her. I learned so much medical information, and luckily have only had to apply the best medicine for my daughter thus far, which is loving her with all of my heart and soul.

Ironically, three months after my daughter was born, I started feeling sick on a daily basis, which I was not used to at all. I went to a doctor who I had never met before, because I had not been sick for years, and due to my insurance changes, otherwise not being able to afford it, I had no choice to keep my previous health care provider. The doctor who I went to charged 50 dollars in cash, prior to every visit. Although I wanted to spend as much time with my daughter as possible, and return to school after the first year, I had no choice, but to get a minimum wage part time job to afford my doctor visits.
I was told on numerous visits, that I was depressed and needed to be on antidepressants. Every antidepressant medication prescribed, made me sick, and on one occasion, I felt so bad that I visited the Emergency Room.
Just as my luck would have it, it was the first day on the job for the ER physician who I saw. He took some blood work and a urine sample. He seemed puzzled as to my numerous symptoms, and gave me strong antibiotics, without a diagnosis. Over one year later, I found out that the lab work performed at my ER visit revealed a major thyroid problem, and had been overlooked by the ER staff, as well as my general physician who was sent copies of my ER medical records.

By the time this was found out, by a new physician (on my first visit with him) my thyroid stimulating hormone (TSH) had risen to a level of 394. A healthy TSH should be no more than 5. My doctor told me that he had never heard of a TSH that high and had called about 10 other physicians to see if they had dealt with such an elevated TSH.
No physician that he knew had ever treated a patient with this degree of hypothyroidism.

I was very relieved to finally have a diagnosis, and to know that my condition was treatable. But as a result of having had this for so long, many other conditions started to branch out, such as Paroxysmal Supraventricular tachycardia (PSVT), an abnormally high heart rate brought on by minimal exertion, causing numerous unpleasant symptoms. Eventually I got to a place where I felt like I was used to managing my health and was not going to let it stop me from following my desire and my passion of going to medical school.

I tried to turn my bad into good by learning all that I could in the medical field, so that I could apply my knowledge, and care to those who may possibly be in a similar place that I was in before and after my diagnosis. I wanted to be the nurse that I never had, and one who could be compassionate and understanding to patients, because even though I had support from my loved ones, a part of me couldn't help but to feel so alone and scared. I was making the deans list every quarter at school, and the more I learned, the more my desire increased to keep on learning, and to take my medical knowledge and degree as far as I could.

Each quarter at school I was still experiencing strange symptoms that I had not attributed to any other condition, but rather to the combination of all my already existing conditions and their symptoms mixing. One morning during my first quarter, I woke up, and walked about 15 feet and started having my old PSVT symptoms, and then I remember waking up on the kitchen floor, with a buzzing sound in my ears, and that was the first health experience that brought me to immediate tears out of fear. But as it got worse and started to occur more frequently, I finally admitted to myself that I could not continue my education, until my health was stable.

I had been trying so hard to get health insurance for over a year, and was denied again and again, because I had health issues and likely wasn't going to be paying for a service that I didn't use. In March of this year, which was the best and worst month of my life, I finally received health insurance through Kentucky Access. Their purpose or mission statement was to provide health insurance to those who have been denied due to difficult, or rare and expensive health conditions. I was so happy to finally be able to go see a specialist, and fix the problem so that I could get on with my life, and school, and set a good example for my daughter. The insurance is extremely out of my price range, but luckily I had a family member who agreed to lend me financial support for health insurance, in hopes that I would finally get the answers, and start waking up again and feeling normal, therefore having the ability to lead a normal life. About 3 days after I had received my approval letter in the mail, my husband and I walked into a room together and then, I woke up on the floor to him yelling my name and trying to get a response from me. I asked him if I had fainted. He told me that I did, and I started to cry and then I woke up again. This time I asked him to help me to my bed so that I could rest, because I was terrified of losing consciousness again.

That was the first time anyone had ever seen me lose consciousness, because all of the other times I was either by myself, or with my daughter, who obviously was, and is still young to understand.
The very next day, I had an appointment scheduled with my physician in which we were going to see how my thyroid blood-work results had changed. It was this day that my thyroid had finally gone into a normal range, which was actually March of this year (2009), and had been abnormal since September of 2006. My husband attended this appointment with me, so that he could explain to my doctor what he saw as I had lost consciousness. My doctor knew that it wasn't good, but needed to refer me to a cardiologist for further analysis.

The cardiologist ordered an echocardiogram (ultrasound of the heart). This test let to other tests, which finally have yielded a diagnosis that I never expected, but especially for it to have no known cause.
I was diagnosed with Idiopathic Pulmonary Arterial Hypertension. This is also known as Cor Pulmonale.
I now have to drive over an hour away to see an IPAH specialist. My prognosis, after they performed right heart catheterization, is that I will likely die of right heart failure, as my pulmonary arteries are narrowed, and my pulmonary pressure is high. Due to this my lungs can't receive adequate oxygen, and my blood is backing up into the right side of my heart. The specialist said that 5 years or less is the average survival rate for this disease and the optimal outcome would be that within that time maybe there may be a medical breakthrough in medication.

This disease makes me faint with extremely minimal exertion, causes shortness of breath, swelling, pain, an enlarged right heart and enlarged lungs, which are already present in me, and due to less oxygen going to my brain and body from this condition and from my PSVT, I have short term memory loss. My disease has 4 stages of progression with 4 being the worst. I am in stage 3 and if I would have had insurance, I could have seen a specialist earlier, which would have given me a longer rate of survival, and a better chance at partial recovery from medications. But the most important thing to me is the future of my daughter. I can't think about the future of her life without getting extremely emotional. I am 23 and should not have to go through this, but my daughter is my everything, and sometimes the only reason I smile, or get up. I know that I am everything to her. She is a mommy's girl, and I don't know what to tell her if anything, and I can't even try to imagine her life without me in it. I really can't! I am in tears right now just writing this.

I am in a tough situation, and now my insurance company is trying to find a reason to terminate my coverage. I am on a lung transplant list, and I am in no shape to work, emotionally or physically. When I was strong, I was trying to do the right thing. And now that I am weak, I feel like insurance companies, and the government is doing me wrong. Now that I am weak, I have to fight these corporations for the right to having a chance at life, but they always seem to find a reason to make my battle take longer or to be more challenging, and I don't have much time to wait. It's not fair that my life is in jeopardy just so that these wealthy corporations can save a few bucks. My medications for this disease are the only thing that will slow its progression, and they tell me that I have a good chance of improving with treatment. However, one of the medications I would need, costs over 1 thousand dollars a month. And the other medication that I am later going to be given is between 100- 120 THOUSAND dollars a year.

I thought that this would likely be cause for a compassionate allowance, but just as everyone else is doing, I am being put off by SSI. I qualified for SSD based on my families' household income, which is even worse now, because my husband has been having to stay at home to help take care of me and our daughter. All of this just makes me feel depressed and guilty and generally defeated. I don't know what other option I have. I feel like I am just waiting to die and I don't know what else to do or where to turn.
I really hope that someone responds or reads this. I know I typed a lot, and I seriously doubt Barack Obama will actually read my letter. But I voted for Barack for all of these reasons, and I know that changes are happening in the health care world. I just hope it's not too late for me. If anyone reads this, and knows of anything or has any advice, please let me know, because it's not about me anymore. My life is focused on staying alive to take care of my toddler, she means more to me than any words could ever express.

I REALLY NEED SOME HELP, AND HOPE SOMEONE WHO HAS THE POWER TO MAKE A CHANGE, COULD TAKE 10 MINUTES TO READ THIS, WHICH COULD END UP SAVING MY LIFE.

Many Thanks,
Mallory Edmiston Goggans