Stories Shared - Tears Shed

I was totally selfish when I began to write this blog. I thought it would be a way to tell the story of what happened to me, document the process of the medical, emotional and legal stuff, and to place it somewhere outside of my mind and body. A dumping ground, so to speak.

It worked. It helped me to put one foot in front of the other and to move forward.

Somewhere along the way, I wondered if anyone was reading it. The blog site did not have stats at that time so I just kept writing in hopes that my experiences would help someone just receiving a bad diagnosis. A fatal diagnosis.

In October of last year, I received a comment on my blog. Having never done it before, I offered to meet via e-mail. That is where our friendship began. This amazing woman, Joanne, was trying to find information and help for her ILD diagnosed husband, Jeff. I was just a little further down the road but I was able to offer my experiences and knowledge learned through the ILD Support Group.

Yesterday, I awakened to find this e-mail below. Within seconds, I was in tears and as you know, dear reader, I am not a crier. We plan to meet on our next road trip. We MUST meet.

Grab a tissue. With Joanne's permission, here is the e-mail:

Are you ok? I noticed in reading your blog today you mentioned supplemental O2. I am praying for you tonight. What can I do for you my friend?

Do you realize it is one year ago that Jeff was on 6 liters of O2? These were the really bad times. He was already living in the RV this time last year, I think, or close to this time. How you have helped me in that past year. I am so grateful that you have been my friend. I don't know what I would have done without your support.

How selfish of me to drag you through my emotional turmoil. I am sorry for that but grateful to have you near me. You have been my candle burning warm and bright when I was totally in the dark.  I hope one day soon we will meet. You would think I'm the one suffering like Jeff has with the way that I stroke these letters.

This past year I've learned a lot about strength from what Jeff has been through. I've watched people survive and actually live. Not to linger in the puddles but to move along in the lives that they were dealt. This time last year, I remember crying loud and hard while I drove the mower around the front yard. No neighbors are especially nearby and, with the mower running loudly, I would sob. Tears would run down my cheeks. I was just beginning to recover from my own surgery. Tired. Scared. I had just returned to work. But I felt I was so physically strong to handle what I did.  God allowed me health just when it was needed. I had to be strong. I know Jeff probably doesn't think I was strong but I learned I had to make a choice to survive Jeff's illness so I could save him. It tore my heart out to watch him struggle to breathe.

I will all my life remember the hours I would spend on the phone with my 89-year old mom late into the darkness of night. She walked me through my fears. It was she who would spend her days in prayer for Jeff. It was she who gave me the holy water that I would rub down Jeff's back every single night and I would pray out loud and ask God to heal my husband's lungs.

I found your blog one late night. I poured over your messages to your followers.  You were alive. You held promise. You were going to an ILD center. I had so little knowledge then. But this was a breadcrumb. How could it be that one could possibly be 50 miles from our home?

The next morning was the darkest. Jeff struggled through that night. He refused to let me call for help. He prepared to let go that day. Called his employer to secure what I would be entitled to and told his parents how he wanted them to stay close to me. I remembered the ILD center in Cincinnati and I called. I was desperate. I told them my husband is ready to die today. It is a miracle that they rearranged the entire next days schedule to bring Jeff in. He was going to see a doctor who saved peoples lives.

Jeff was pale that day we went down to UC. I thought they might admit him. The interview process was long and complete. Many, many tubes of blood. CT scan. PFT with an RT. So many things the other hospital had told us incorrectly. His O2 levels were dangerously low. But by the time he left there that day, he was improving. His O2 sat was finally above 87%, which had been his resting O2 saturation percentage. 77% with exertion. He may have been on 6 liters of oxygen but he was pink. And he could think.

The next weeks and months for Jeff would be full of tests and a bronchoscopy, and a VAT’s surgery that, unfortunately, included a collapsed lung. Chest tubes. The day his VAT's surgery occurred it was 104 degrees outside. We were in a big city away from home. I was so tired while Jeff lay in recovery for eight hours that I went to the parking garage and slept for three hours in the car. Oddly that was my turning point. That strange decision made me feel strong about myself. I was proud of myself. I felt empowered.

A diagnosis from the biopsy was made. NP. A treatment began.

In October Jeff would return to work. It was you who told me to walk him to the door that morning and kiss him goodbye. And I did. What a moment.

So it is a year later and Jeff and I, this Wednesday July 25^th, will celebrate our 20th wedding anniversary. We thank God everyday for the time we have been given, for the friends we have made and for the physicians that have given him stability. Life.

Thank you, my friend, for your guidance down this rocky path.

Your sister in life for life

Joanne