Unconditional Love

Here we are again at a cross road in our lives and having to make the decisions on whether too or not too. We have been faced with difficult decisions before but this time it’s different, this time my husbands quality of life is hanging by slivers of thread and no mater what we decide the threads will become weakened.

The phone call came on May 5,2021 at 1:00 p.m., it was our LVAD nurse Allison. As usual they call my phone because I handle all the medical issues and always have, this time she asked that Joe be on speaker phone with us, my heart dropped. Everything stopped and it seemed as if the world paused. She started by saying the Team discussed you today and then she says they decided to list you for transplant. I was relieved, excited, scared and nausea at the same time. Joe was motionless, he sat still and the word okay was all he said. Did he hear her right? Did he not understand? Did he not want to be listed? He should of been excited and he was not. I was confused and everything was a blur after that, the last thing I remembered is at 2:00 p.m. he would be officially on the transplant list and he had an appointment on Monday.

After the call Joe sat there as if he were in a trance. He admitted he was scared and not sure what he should feel or think. He felt like the whole situation was surreal. He wasn’t prepared for this day and now on Monday we would find out just how unprepared we really were.

On Monday we walked the hall of the hospital to the elevator, took it to the 14th floor, signed in, waited to be called back. We sat in silence and patiently waited for the doctor to come in. There were so many thoughts and questions running through our minds. Should we be happy? Should we be celebrating? Nothing about this day seemed good and we were about to find out we were right.

The doctor’s first words were “WELL, JOE”, and I knew right away this was not going to be good. As usual, I was right. Her words pierced my sole like a knife. She said it was a difficult decision to get you listed, we were skeptical but we decided go ahead and list you, BUT and there we have the infamous BUT. That little three letter word changed our whole outlook on this transplant journey.

The word BUT followed these words, you will probably only have about three years with a transplant heart if you make it off the table. IF! What the hell IF … and then more bad news, oh the risk of you going into kidney failure is very high and more than likely you will need a kidney transplant also and if that didn’t blow our minds she proceeds to say you will most likely end up with cancer at some point because of your previous cancer history. With all this being said tell me again why getting a new heart is a good thing. The odds are against him and we were sitting in shock not knowing what the hell just happened.

We wanted the transplant, we did everything they asked, they made it sounds so wonderful, we were ready to start the new journey of life and now we needed to make the most difficult decisions ever, we needed to decide to get the heart or keep the LVAD. The doctor threw a wrench in our plans and now what? This cannot be happening but it is.

We walked through the hospital in silence to the car. As soon as I sat down the tears started to flow and the reality of it all hit me like a ton of bricks. My husband’s time with us was just been cut even shorter and the hope we once had was diminished within minutes of our appointment. I already knew my husband’s decision, he just hadn’t said it out loud.

We wrote down the pros and cons of keeping the LVAD and getting the transplant. The only options for a better quality of life and less risk was to keep the LVAD. My husband didn’t like the odds of the transplant and in his heart he felt he wouldn’t survive the surgery, so HE decided to just keep the LVAD and get himself stronger. As those words came out of his mouth he felt a weight lifted off his shoulders. He was afraid to say them to me, he didn’t want to disappoint me or the kids.

No one truly knows how much time they have on this Earth, but we know Joe’s has been limited from and yet he’s still here. He is a true survivor and his will to live has amazed me from the time he was diagnosed with cancer in 1996. Although He is much weaker now and his fight has emotional, physically and mentally drain every ounce of his being, he is still above ground and willing to live no matter what the doctors throw his way.

For now the transplant will be on hold. For now we will continue to try and live life to the fullest with the cards we were given. For now!!