Wednesday, September 21, 2016

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!

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 very early diastolic heart failure. 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. These conditions put me at serious risk of irregular heart beats, and cardiac arrest at any given moment - which is a terrifying thought. 

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/


1 comment:

  1. Hooray for progress! It must feel so good to be getting at least some answers now.

    ReplyDelete