I don't get a heart!

NOPE!  

You don't qualify for a heart transplant!  

Those were the words I was expecting from the transplant team so not a huge surprise.
.
On February 19 2020 I went to University of Michigan Medical Center Cardiac Care in Ann Arbor Michigan.  My new Doc is Dr. Scott Hummell MD MS Professor of Advanced Cardiac Transplant and Heart Failure. 

For those of you who do not know, I have a severe Genetic Disorder Called Cardio Megaly, or the enlarging of my heart via muscle growth.  Resulting in Cardiomyopathy.
More than 200,000 US cases per year
Treatable by a medical professional
Requires a medical diagnosis
Lab tests or imaging always required
Chronic: can last for years or be lifelong
Cardiomegaly is usually a sign of another condition such as a heart valve problem or heart disease. It may also signal a prior heart attack. It can also occur from bodily stress caused by pregnancy or certain infections.
Symptoms, if any, may include shortness of breath and swelling (edema).
The underlying condition needs treatment. This may include medications, medical procedures, or surgery in rare cases. (Mayo Clinic)
Symptoms, if any, may include shortness of breath and swelling (edema).
Treatment varies
The underlying condition needs treatment. This may include medications, medical procedures, or surgery in rare cases. 
Medications Diuretic.
Cardiomyopathy (kahr-dee-o-my-OP-uh-thee) is a disease of the heart muscle that makes it harder for your heart to pump blood to the rest of your body. Cardiomyopathy can lead to heart failure.
The main types of cardiomyopathy include dilated, hypertrophic and restrictive cardiomyopathy. Treatment — which might include medications, surgically implanted devices or, in severe cases, a heart transplant — depends on which type of cardiomyopathy you have and how serious it is.

Symptoms

There might be no signs or symptoms in the early stages of cardiomyopathy. But as the condition advances, signs and symptoms usually appear, including:
  • Breathlessness with exertion or even at rest
  • Swelling of the legs, ankles and feet
  • Bloating of the abdomen due to fluid buildup
  • Cough while lying down
  • Fatigue
  • Heartbeats that feel rapid, pounding or fluttering
  • Chest discomfort or pressure
  • Dizziness, lightheadedness and fainting
Signs and symptoms tend to get worse unless treated. In some people, the condition worsens quickly; in others, it might not worsen for a long time.
So this is the result of an underlying disease, I have Systemic Lupus Erythmatosus and Systemic Scleroderma both of which I was born with.  Both effecting the cardiac and skin as well as my lungs. 
Okay so that is the background.  I knew going in I would not get a heart, it would be a waste with my current medical diagnosis.  Why waste one.  
But, there are options today.  Mine is an LVAD (Left ventricular assist device) or VAD for short.

What Is an LVAD?

A left ventricular assist device, or LVAD, is a mechanical pump that is implanted inside a person's chest to help a weakened heart pump blood.
Unlike a total artificial heart, the LVAD doesn't replace the heart. It just helps it do its job. This can mean the difference between life and death for a person whose heart needs a rest after open-heart surgery or for people waiting for a heart transplant. LVADs are often called a "bridge to transplant."
LVADs may also be used as ''destination therapy.'' This means it is used long-term in some terminally ill people whose condition makes it impossible for them to get a heart transplant. (Mayo Clinic).
Like the heart, the LVAD is a pump. It’s surgically implanted just below the heart. One end is attached to the left ventricle -- that's the chamber of the heart that pumps blood out of the heart and into the body. The other end is attached to the aorta, the body's main artery.
Blood flows from the heart into the pump. When sensors indicate that the LVAD is full, the blood in the device is moved into the aorta.
A tube passes from the device through the skin. This tube, called the drive line, connects the pump to the external controller and power source.

The pump and its connections are implanted during open-heart surgery. A computer controller, a power pack, and a reserve power pack remain outside the body. Some models let a person wear these external units on a belt or harness outside.
The power pack has to be recharged at night.
SO!  there you have it.  I will be plugged into an outlet at night to recharge, which my batteries are charging.  I have to get up every morning and change from wall outlet to battery packs (two of them) That I wear.  If I go anywhere there is a back up set and charger that must go with me.  Two family members must be trained on any issues that may arise as well as cleaning the placement site.  I wont be able to drive for a minimum of 3 months, hospital for about 6 weeks for me due to Immunity issues and then home with training etc.
I am not taking this lightly at all, I am doing my research and thinking it through for sure.  More test will tell all if I can even get this done.
Why would I want to do this?  I want a better quality of life, be able to walk across a room without losing my breath, going up and down stairs etc.  I am not a people person, so going out isn't a concern, but I have hobbies and things that are impeded by my current situation and I would like that to get better as well. 
 So we will see.  I go back in three months to see how this new med is doing and see if there are any changes that need to be made.  It can take a year for this process to be completed before the surgery unless major complications arise.
This is the update.

Thanks for all your support, prayers and well wishes they are much appreciated.  

Teddy!


Comments

  1. Best of luck to you, Teddy! You know we’re all rooting for you and hoping for a positive outcome. Prayers and blessings to you both! ❤️

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