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jaydeneedsaheart's picture jaydeneedsaheart
Jayde Share's Her Story
Mon, 10/23/2017 - 2:05pm
I am about to tell you a story that still to this moment makes me feel as if I am in surreal dream waiting to be awakened.
It started with a cough. A nagging cough that drove me to the minute clinic. They told me it was just a cough that would work itself out. I left and went about my routines of working, working out, racing a half marathon all feeling a little “off” The following Sunday, I volunteered with my friends to course marshal the 10K cheering runners. Before the race started I was chatting with my good friend. I explained at that very moment I wasn’t feeling well at all and my chest hurt. He then said, “Maybe you should get that checked out. It may be something ominous that needs attention.” I filed that conversation in my mind and went on to cheer the runners and later that day headed a neighborhood Easter Egg Hunt. 
It wasn’t until Tuesday at around 9 am I recalled that file card of the conversation. My heart was racing and I could see it beating through my shirt all very irregular. I called Anne and told her I needed to go to the ER room to address this funny thing going on, I thought it was the inhaler that the doctor prescribed me and that I would be back to work by noon.
From Howard Community Hospital to Washington Adventist, to get a right heart cauterization to reveal that my coronary arteries are in top shape. They sent me home with medications to correct my irregular heartbeats and I was too continuously to wear an external defibrillator under my clothing. I was told it was like having a personal paramedic on my back. I was terrified thinking at any given moment, the alarm would go off and a shock would follow. I went home to continue living life. The next day I was shopping with my two daughters and the vest alarmed and warned all to stand back as a shock was coming. Of course I was conscious and able to turn the shock off but that sent my anxiety over the edge. 
Later that evening, the night before Easter began the stays in the hospital to find out what was going on. There were several visits where I was taken to ER to address the terrible sickness I was having at home. 
That Thursday the cardiologist that was caring for me decided that my illness was out of his scope of practice and referred me to John’s Hopkins and scheduled the appointment for Tuesday. 
From that day until that Tuesday, I felt deathly ill. I couldn’t wait to be seen. Tuesday came and I my husband took me to the appointment. I honestly felt like I was dying. As we were waiting to be seen, I told my husband that if I were to die he is to find a new wife that would treat our children like you treated and raised Samantha, his step child. 
The doctor came in and took one look at me and immediately admitted me. I found out later that if I were to have waited any longer I would have died of congestive heart failure.
Ok, I will spare you of all of the different tests and procedures that were performed to investigate why I was so sick. It was then found that I have Giant Cell Myocarditis. A virus or illness that decided to run its course in my heart. They started the process of getting me listed for a heart transplant and having conversations of placing a pump in my left ventricle of my heart. I just couldn’t wrap my head around any of this. I was devastated. I kept saying to myself, “I am a good person why is this happening to me!” 
I had no other choice but to get this device placed in my heart and wait for the heart to become available. I thought that was the conclusion of my dream and things were going to turn around. 
The very next day, they rushed me back into surgery to address the weakness of the right atria of my heart. Evidently, the virus got into that side too. They placed a central mag (to help circulate the blood through my body.) The plan at that time was for me to be parked in the hospital until the donated heart became available. Oh my God! How long was I going to wait there in the hospital? The sadness crept in. As visitors came to see me I could see the sadness in their empathy in their eyes and I could feel the energy of sadness overwhelm me. I would still continue to tell myself, “What did I do to deserve this; the self-pity took up dwelling in my soul. At times I could keep control of it and times it would completely overtake my being. On a regular basis I would tell myself out loud, ‘I am a positive person and this sadness is not like me.” 
Let’s go back for a moment about running all of the work ups for the heart transplant. Well, one test came back which put me out of reach of a match for a heart. My antibodies were too high and the waiting in the hospital for a heart was no longer on the table.
It was decided that I was to be transported via helicopter to Washington Med Star where my heart would land in the hands of Dr. Boyce, board-certified, internationally renowned cardiothoracic surgeon and Surgical Director of the Advanced Heart Failure Program at MedStar Washington Hospital Center. He is one of the busiest cardiothoracic surgeons in the country, performing over 425 heart surgeries per year, including globally, and over 11,000 in total. It was there that it was decided that another pump was to be placed in my right atria just like my left ventricle. Let me remind you that there are very few people (around 50) that are wearing two pumps. 
As anyone that has gone through regular trauma, surgeries and confined to a bed comes with a price of loss of weight and strength. I looked down at my body one day to exclaim, “This is not me!” I lost a total of about 25 pounds of lean muscle mass. I was frail and weak. I had to start over. Then, after a bout of Pneumonia things began to turn around. 
I was still overwhelmed with frustration, sadness, anger but in order for me to home I had to get a hold of myself to control this. This is where I was completely was dependent upon my friends and family that never left me alone in the hospital. They would sleep in the hospital chair at night. My husband had to hold the balance of being by my side, caring for our daughter and working his full time job. His father came to visit for duration plus 2 weeks of my hospital stay to help out. So many people came to sleep by my side, to hold my hand, cry and help me find comfort. My sister flew countless times from Wisconsin to be by my side at my weakest moments. There is no other love that a sister can give. It is simply unmatched. My daughter came back and forth from Pennsylvania as often as she could to be with me as well. It was then too I came to realize the amount of love and generosity that so many people gave to me. The families at Glenelg Country School’s generosity was so overwhelming. I am at a loss of words to describe the deep gratitude that lies with in my heart; it shall never be forgotten. The members of the community that I live in have been there for me too. There were people that I have never met have donated to my medical expenses.
Well, I am home now under the care of my “super husband!” I am allowed to exercise in small bouts to build back up my strength. I can ride my bike on the trainer and I have specific exercises that are helping me get stronger. I still occasionally join my boot camp friends to do my exercises while they do theirs. I have a home care nurse that comes to check on me three times a week. I believe she is an angel. I still have moments of frustrations, tears and anger. I pick up my boot straps and remember of the past few months of not feeling a night time breeze, the rays of sunshine and the chirping of birds .Those that know me, I have one speed, FAST. It has come to me that it is time to slow down, enjoy those blissful moments that were too often over looked in my past. 
My journey is not over. I have scars; I am not ashamed of them. They tell my story and remind me of how lucky I am to be alive. I am hoping that one day my story can help others. Until then, I will continue to recover as I wait for the angel to deliver the heart. 
To be Continued
RichmondLVAD's picture RichmondLVAD
Welcome!
Tue, 10/24/2017 - 10:22pm

Hi Jayde,
Thank you for sharing your story, I read with great interest. Your incredible story is par for the course at this blog. We are survivors! And it sounds like your energy is returning.

The doctors told me that likely a virus attacked my heart too. I am strong and doing well today with my LVAD. I wish you a speedy recovery and a new heart soon.

Maggie55's picture Maggie55
New to this site
Sun, 10/29/2017 - 7:01pm

Hi everyone I am new to this site . My husband has just had his lvad fitted almost two weeks ago it's been very quick and a bit fighting for us both .

MegaStation's picture MegaStation
S'all good!
Fri, 11/03/2017 - 3:40am

I am 33 and got "sick" in the space of 3 month. They thought I had pneumonia and gave me antibiotics that didn't do shit to help so I went to the ER. They did a bunch of tests and during my EKG I went into cardiac shock. They found my incredibly enlarged heart and drained 40 lbs of fluid from me. They told me my heart would not last much longer (it would stop as soon as I stopped the dobutamine) and told me I needed a heart pump and a transplant.
Next thing I know, I'm waking up with a tube in my throat and blinding pain in my chest back and shoulders. Luckly (lucky for them) they were able to remove the tube and give me a morphine button within 3hrs of me waking up. I was waving my note pad around telling them to move their asses and get the fucking tube out. The rest of my recovery went just as fast. I was out of the hospital 10 days later.
My driveline site freaks me out. I am so a afrade of getting an infection. I had erosion from the cord laying on my wound. I felt like an invalent. The batteries and controller would budge under my shirt making me feel like a spectacle in public. The stomach cramps, trouble sleeping, incisional pain, muscle pain, lots of pain, headaches and weakness left me scared and depressed.

I made sure to communicate this ALL to my LVAD team.
They gave me Trazodon to help me sleep. Adjusted my meds and set me up with a wound care specialist and cardio rehab.
Exercising really made me feel much better and being active improved my head space. They helped me improve my driveline dressing change technique and now I change my own dressing and it's healing up nicely. I got a bunch of ideas on how to wear my LVAD online and am now much more confident in public. The only bullshit is that my team won't give me anything for pain. They are worried about the opium epidemic. Well they are causing it cuz I would totally buy it on the street if I knew how.
My advice: talk to your LVAD team and doctors. Make them give/adjust your meds as nessary and take them on time as directed. Exercise. Don't push yourself. If you can't get into cardiac rehab right away, go on walks. Make sure your team shows you how to care for your drive line exit site and follow instructions to the letter. Follow your diet plan.

Things WILL get better. Stay positive. You're not alone.
-MegaStation

Anita Ross's picture Anita Ross
Thank you for sharing your
Sun, 11/05/2017 - 10:23am

Thank you for sharing your story Jayde. May God continue to bless your journey. Stay Strong <3