Wednesday, September 21, 2016

Singing For Stem Cells Fundraiser

Further event details available here: https://www.facebook.com/events/1797081953839957/

I Am Accepted! - HSCT Update

Since I know this is what you have all been patiently awaiting - after weeks of deliberation between the researching physician, and the head cardiologist, I was approved for the HSCT Clinical Trial in Chicago!

*UPDATE AT BOTTOM 9/23/16* 

I received many emails, and assessment results, since I returned home, not all of which contained pleasant news. What was quoted at two days, ended up being a two week debate about my candidacy for the trial due to some discovered cardiac issues. In my last post I had expressed that my "heart and lungs looked good." Unfortunately, upon further review of the final results, I actually have extensive heart damage. 

I am sure you are wondering how this vast discretion could happen. When I saw the physicians in Chicago not all my tests were completed, and the ones that were only had preliminary results available. This means they honestly didn't have a great picture of my heart at the time of my appointments; however upon further inspection many abnormalities presented. The basis of the findings indicate that I am in Exercise Induced Heart Failure - meaning upon exertion my heart does not pump blood as it should, leading to under oxygenation, fatigue, and irregular heart beats. This was more than likely caused by the my newly discovered Exercise Induced Pulmonary Hypertension - high blood pressure in the lungs causing serious right ventricular strain. This condition has also lead to flattening of my interventricular septum (D-Sign), the wall that separates your chambers. On top of these anatomical abnormalities, my heart has many electrical imbalances, leading to inefficient blood pumping abilities. In a nut shell, my heart sucks doesn't oxygenate my body. It is in really, really rough shape. These conditions put me at serious risk of irregular heart beats, and cardiac arrest at any given moment - which is a terrifying thought. (See Update Below!)
My lungs however were found to contain no fibrosis! This leads my physicians to believe it was never my lungs that have caused my oxygenation issues (like previously believed) leading to my supplemental oxygen use, but my heart not properly able to oxygenate my blood stream. The scary part is I have been on oxygen about a year, meaning I have probably been in heart failure that long - I am honestly extremely lucky to have not had a heart attack yet! I have felt irregular heart beats and chest pain almost daily through out the year but my local cardiologist always told me my heart was fine! Yeah -- he is in for a surprise (and a strong talking to!) If he would have just run the tests I ASKED for we could have caught this so much sooner :( I will be consulting with him later this month to find out what my local plan of action is, and if I will need a defibrillator of not. 

So what does all this mean for the transplant?! Well one of the reasons Chicago's Clinical Trial is so special is became they have three protocols for their HSCT patients:
  1. Standard
  2.  Heart Friendly
  3.  Super Safe Cardiac 
    • Yes those are the actual names! lol
Every other hospital in the country only has one standard protocol. Chicago a few years back realized that all the incidences of patient deaths were caused by heart abnormalities so, they created two protocols for different levels of heart damaged patients. Three years ago there was no "heart friendly" protocols and patients like myself were turned away and told they would have no chance of survival during a transplant. The third option, the "super safe cardiac" protocol, has only been done 11 times out of the hundreds of HSCTs at Chicago. Those patients are extremely sick and have rough transplants due to their failing hearts. Can you guess which protocol I qualified for!? lol Yup the "super safe cardiac" protocol! It is still the exact same procedure I have explained many times before, only I will have a few different drugs that are easier on the heart, and a lower dose of Cytoxan.




For those of you wondering what comes after the approval the answer is: waiting! lol There is literally mounds of paper work that must be done, and different insurance companies to fight with before we can move forward with the actual procedure. I was given a guesstimate by the transplant team that we may be looking at starting around December! In the mean time - let the fundraising begin! Please visit my YouCaring for updates, and a breakdown for the costs of treatment and such! Also, check out my fundraising even on Facebook: Sing a song and save a life at my Singing For Stem Cells Karaoke event October 20th! 

Karaoke Fundraiser Event Details: https://www.facebook.com/events/1797081953839957/

*UPDATE 9/23/16*
I received a personal call from the transplant teams cardio this morning with some big news: I am NOT in heart failure! It turns out there was a very unfortunate typo by a technician that accidentally switched a result from "normal" to "indication of heart failure."  The result displayed an "Exercise Volume Fraction" result of 23% which indicates severe heart failure, but it should have displayed the words "Extracellular Volume Fraction" which is perfectly normal at a value of 23%. So long story short, while yes I do still have heart abnormalities, I am not in heart failure. The team has decided that I will still be on the "Super Safe Cardiac" protocol due to my young age, as well as my overlapping medical conditions including POTS.