It’s over. Four days of testing looking at everything, head to toe, and literally my big toes, is finished. I won’t bury the lede, I heard back this morning, I won’t be listed for a new heart at this time. I am not shocked or saddened by this news. After all I have gone through over the last two weeks, this is the right call for me right now. As I watched the test come back one-by-one I could see the story that was being told in their results. It is a story of someone whose heart is sick, but whose body and mind are strong. I know what you are thinking, “But Mo isn’t the heart kind of important?” it is, and mine is sick but there are others out there in the world that are more sick. And while the sickness of other people’s hearts doesn’t make mine better, I would never want to be listed when it isn’t absolutely my turn, and my time. Everyone deserves their shot at life and right now I am strong enough, and stable enough to live my life without a transplant. They checked, and that is a win. 

In fact, from my first troubling tests, I have lost some weight and improved my test results somewhat. I’m still not going to be running a marathon next week and no one is saying I am going to diet and exercise my way out of heart failure, or heart disease. These things are a fact of my life, but being as heart healthy as possible is as good for me as it is for anyone. Some things are just medical truths, the less body (mass) the heart has to pump to, the less stress on the heart. The more active a person is, the stronger heart muscle stays. It is no one’s favorite thing to hear, but it is the truth of our biology. 

So what is the plan now? Is transplant off the table? Are they just going to let you get more sick? 

The plan now is to do my best to maintain. The plan now is to work carefully but consistently on keeping this heart healthy and making my whole body as healthy as I can. I have lost about ten pounds over the last three months and I have my sights on at least 20 more. I am hoping to slowly add in some cardio and resistance training to challenge myself and my heart. Again, I am not going to change the cards I was dealt, but I am going to do my best to play them a little smarter than I have been. 

As far as transplant goes, it will never be off the table. The odds are high that this road of mine ends up in transplant. Now, both myself and my team know more about that road than we did two weeks ago. I think we are all relieved that I have the option of waiting a little longer before it is my reality. My end goal, has and always will be, more time. Right now, transplant isn’t the answer for that. In fact, transplant could realistically mean less time. Not because it wouldn’t be successful or give me 10-15 years of a better, more “normal” life but because I want more than 10-15 years. And of course there are those out there who get transplanted more than once, or whose transplant lasts 25 years or more. But no one wants to transplant someone before it is time and potentially cut into the years of their life. Not my medical team, not my support team, and certainly not myself. 

Am I going to get sicker? Only time knows the answers to this. There are some tests that were done that show I have become “sicker”, and others that improved. There are new tests that look like they were taken from a perfectly healthy person, and there are others that show the strain on my body. No one is going to actively encourage me to get sicker. Right now, the plan is to get in better shape, try a new med, perhaps adjust some others, and do the next best thing. I might get sicker, I might not. It might be over the next year, it might be over the next five years. Either way, my doctors are going to be following me so closely I will think I see them in my bushes. I will check with them every three months. I will do heart caths every six months, and I will do my best to be aware of the things in my life that change even slightly for the better or the worse. They are all part of the puzzle and they are all part of how we will know when it is time. Heart transplant has not gone away, it has just gone down the road, and that is okay with me. 

If you wonder how they came to this conclusion, allow me to assure you they looked at everything. Here is a quick glimpse at my weeks at Club Med-icine. 

• Heart Cath
• 24 Hour Urine Collection Test
• Chest CT
• Pulmonary Function Test
• Echocardiogram
  • 2 pokes for IV
• Cardio Pulmonary Stress Test
• Labs
  • 2 pokes
  • 22 vials of blood
  • 44 blood tests
• Panorex X-Ray
• Dexa Scan (bone density)
• Mammogram (no biggy at all)
• Carotid Ultrasound
• Ankle Brachial Index
• More labs (I know right?!)
  • 1 poke
  • Two vials
• Bonus Ultrasound Exam at clinic across town to check up on a mammogram finding, all is well!
• 6 minute walk
• Nurse Visit
• PA Visit
• Cardiothoracic Surgeon Consult
• Pharmacist Consult
• Nutritionist Consult
• Social Work Consult 
• Psych Consult
• Two antibiotics for surprise double lung pneumonia

They looked at everything, they even put teeny tiny blood pressure cuffs on my big toes. This is the right call for right now. Thank you for your love and support through all of this. If I learned nothing else, I have learned that my community is large and I have surrounded myself with the best kind of people, and a couple weirdos to keep it interesting. I am thankful for all of you.