Friday, May 20, 2011

VERY, VERY BAD NEWS

  My twice-yearly visit with my lung doctor, Dr. K. was Wednesday. I was excited to surprise her with my recent weight loss and hitting the qualifying BMI to being the lung transplant qualifying process. I hoped never to have to have a transplant but I thought it would be smart to get qualified.

She was so surprised to see the weight loss! She sent me for two quick Pulmonary Function Tests, blood tests and an x-ray to be sure the pneumonia was gone from last December. She also wrote the referral to the lung transplant group. So, the 6-month qualifying process of testing every organ of my body will begin. One must be qualified before being on any list to receive lungs.

I was thrilled. I could hold this as long as possible unless I get another disease, which would disqualify me. But, if nothing is wrong with me now, I will qualify.

There was a complication with the transmission of the x-ray into my file. The system was down. Dr. K. asked if I would leave a message for her in the morning to remind her to check my x-ray.

Wednesday night, I called my mom, brother and sister to share the good news. I was now under the BMI of 30 to begin the process of qualifying for lungs, if I would ever need them. It had been my goal. It was a milestone that was reached.

We were so happy.

Yesterday, Dr. K. phone at 4:30PM. The conversation began, “The fibrosis radiography has advanced in both lungs dramatically since the last x-ray in December. I am really sorry to tell you this, as you are such a great patient. The timing of you losing the weight and all of your exercising make you a great receiver for the lung transplants.”

Thunk.

That was my heart sinking. The world swirling. I was alone in the house. Michael was due any minute. It as really hard to hear. I was depleting quickly.

I thought I had more time.

She asked my age and said that it gives us three years to get ready. I don’t know if that means there is an age limit to receive a lung transplant. I didn’t have the sense to ask.

She said again that within 6-months of the surgery, I will have a remarkably improved quality of life. She also said that we need to get my insurance in order and that since she is on the transplant team but also my doctor, she had learned a lot and can walk me through this and offer me unique advice.

Dr. K. also contacted the transplant coordinator to give her a heads up. I should expect to hear from this woman in a few days.

Twenty minutes later Michael drove up. I went out to meet him determined to not break down but to tell him as calmly as possible. He hopped out of the car with his great smile and before I could even get him close, I started to cry.

“I have really bad news.’ He thought it was about one of my rehab boys. “No, it’s me.” We stood out front and both cried in each other’s arms.

I relayed all the information I had and we looked at each other with tears running down our cheeks just stunned.

It is now out of our hands. Did we ever really have control? All the exercise and all the food choices and everything we have done had paid off. I have had a relatively healthy six years. That is now over.

We began to think about my health in the past year and realized that I had lots of infections and needed antibiotics more often than in the past. My lungs were changing and not for the better.

We talked about how we are so grateful that we have traveled so much. That we have appreciated every day together.

We are just not able to share the news with anyone. We can’t look at each other without crying. I want it get it settled in my body before I begin to calmly share it with everyone. It may take a few days.

So you, dear reader, are invited along to follow this whole crazy process with me. It is into unknown territory. We shall to together.

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