My Story begins back in September 4 2015. I wasn't feeling too good that day so after I got off of work I talked myself into going to the ER to see what was going on. I was having a lot of tightness in my chest which was making it hard to breath followed with some pain. On that day 8/4/2015 it changed my life FOREVER! I was diagnosed with Afib and CHF (Congestive Heart Failure) at the age of 31. I spent 9 days in Mary Black hospital down in SC where I lived with my 13 year old son as a single mother with a great job for a company that I had adored. Before leaving that hospital I was told that I would no longer be able to work and that I was being put on disability due to my condition and the severity of my heart. They sent me home in what is called a life vest which I was told if my heart was to stop beating the vest itself would shock me and jump my heart back into rhythm and this life vest would come to be temporary only until I was able to get what was called a pacemaker defibrillator. From that moment on my world had changed in what I believe to be for the better. I quit smoking cigarettes cold turkey, there was no more diet pills or caffeine pills nor drinks. I STOPPED EVERYTHING to do what I had to do in order to fight for my life. I did however loose my apartment I was staying in due to the lack of income from my disability so my amazing boyfriend I have asked us to come stay with him and that he would take care of me here in NC. My son didn't want to move or leave his family there in SC so we made arrangements for him to then live with his Dad. It all worked out for the best of all us. I didn't want My son to see me so sick as it was.
I then began my journey here in NC. I was referred to an EP specialist by the name of Dr. Rhyner. He spoke more in depth with me about getting a pacemaker defibrillator but before he had put the device in me I had a few different echo's, followed by a electrical cardioversion which is when they try to flip my heart back in rhythm. This was the second cardioversion at this time. It ended up being another no go and only lasting that night before my heart flipped right back out of rhythm. October 7 2016 I then had my implant surgery for my pacemaker defibrillator. In hopes that it would control my afib and stabilize more of my hearts arrhythmias. The device was working well and doing exactly what it should have done. Granted I had to come in a few more times to be adjusted to get the device to keep up with my crazy heart. Little did we know there was a much bigger issue happening underneath the service.
After having the pacemaker defibrillator put I had felt brand new. I even joined a gym here in town and lost a total of 31 pounds all by myself with doing nothing but making healthy choices. I stuck to my low sodium diet and took out all the caffeine drinks and BOOM there it was I was back. Needless to say that only lasted 6 months before I took a turn for the worst. My CHF started to catch up with me and quickly. I then began to see Dr. Trichon my CHF doctor for the issues I was having. I started to get extreme tightness back in my chest all over again followed with shortness of breath and dizzy spells which made it hard to do much of anything at all. I had to stop going to my gym all together. I began with a stress test, to more echo's, followed by my 6th heart cath. I had been through the works. I was put on more medication each time I saw my CHF doctor. I am now up to 10 different kinds of medication daily. We found out that my mitral valve was now severely regurgitating as well as having the right side of my heart leaking valves as well. My heart was in stage 3 of CHF and going down quickly. My doctor at the moment put me on a medication called milirione that can only be given by an IV so I have a picc line with milirione pumping through all just to keep my pump function going. We knew that my next step was going to be a heart transplant and that there was nothing else that can be done because my whole heart is just shutting down and loosing the battle all together. So while I was in the hospital they put me through a long process of all types of test to make sure I would be a good candidate to have the transplant. All test came back good to go.
Just last week I went back to my CHF clinic because I am starting to feel weak, tired, dizzy, gaining fluid all over again with dull chest pains, followed with heart palpitations and episodes with stabbing sensations in my heart all over again happening quite frequently. I was told that my milirione they had put me on isn't working the it was in the beginning. We all knew that the milirione wasn't going to last forever but was going to be a bridge to get me to a heart transplant. The milirione is a medication they put me on to help squeeze the function of my heart all together because my ejection fraction is barely anything at all. 17%-32% in pump function. For the past 3 months now I had had a wonderful home health care nurse that comes to see me weekly to change out my milirione medication and changes all my lines too my picc and changes out the dressing to my picc line as well. Anytime I need her she has been here for me and I'm so thankful that she is in my life. For an hour a week not only do I have her to come in to take care of me but she also talks to me and listens to my emotional self just as a friend would. She even cries with me at times when I'm having a harder day. Her heart is just as big as mine and it's nice to feel that I have a friend with in her as well as my care giver.
I Now have an appointment set for Jan. 31 2018 to drive 3 hours and 40 min. away (one way) to the wonderful hospital of Duke in trying to get me in there ASAP to have this transplant and to be put on there heart transplant list. My CHF team is trying to push my appointment in sooner due to my health declining even more.I will continue to decline in my health until we can get that new heart in me. We just don't know the time frame on how much longer I'm going to have before I really take a turn for the worst. I am praying this transplant will come sooner rather then later but all I can do is hold on and listen to my doctors on what's to be done. I am terrified of the NOT KNOWING but I do know one way or another I will get through this and it will all be ok.
I started this account in hopes that it would help with the costly expenses that our family will have to be burdened with while having to drive a total of 8 hours back and fourth in getting me to this wonderful hospital and even so afterwards with weekly doctors appointments that I will have to have to keep up with all my visits. I know after my heart transplant I will be in the ICU for a good week but then I'll be staying in the hospital for 14-30+ days. As well as any medical expense's we may have to pick up along the way from my heart transplant. My boyfriend will not be able to take a whole month off just to stay with me so he will be having to continue to work and taking the time off that he can making this drive back and fourth just to be with me alone. I do have a great family and friends support system that has given me more strength then I ever even knew I had. Yet I know this is going to be hard on our family to bare with. So If you could please help in anyway way through this tragic time weather if its a donation or a simple prayer I would greatly appreciate all we can get. Thank you all for your love and support. I will make it through this heart transplant and I will continue to strengthen my heart in every way knowing that this is my second chance at life. Thank you all greatly for all your kindness, love and support. I couldn't be happier knowing I have such amazing people in my life like your self's thank you all. God bless each and everyone of you.