This was supposed to be my six month entry. I’m a bit late. It’s now been eight months post transplant. I’ve had a few “adventures” including a hospitalization for pneumonia. I now have a port because my veins can’t handle the high powered antibiotics I have to take when hospitalized.  Not a big deal except its quite ugly. I know, I know. 

When we had our “come to Jesus” talk with the pulmonologist pre transplant one of the things he said was there will be issues, and frequent hospitalizations, I can guarantee that. Ever the optimist, I discounted his warnings and took a “not me” attitude. Frankly, I’ve tried, and succeeded to keep negative thoughts out of my head. Until last week...when I had my last bronchoscopy which included Botox to my esophagus, I still had food in my stomach even though it was well past 12 hours since I ate. They quickly intubated me so I wouldn’t aspirate said food into my lungs. (Operative word here is “quickly”, my throat is still sore from the procedure.) Because of the food the doctor ordered a stomach emptying test. This test involves eating radioactive eggs, toast, and drinking water. An X-ray is taken every hour for four hours to measure how quickly you’re digesting the food. I didn’t pass the test. 

I’ve now been referred to a gastro doctor. The unofficial diagnosis is gastroparesis and a GI motility drug has been prescribed. Hopefully this will be all I need. There are several motility drugs that can be tried before going to the last resort, which is a permanent feeding tube. I wish I could say I’m taking this in my typical stride but I am not. Instead I’m googling ”life with a feeding tube” and spending lots of time wallowing in a real pity party. The cold, double ear infections, and pink eye(s)haven’t helped. On top of all that, I have a really horrible hair cut. 

For the first time in eight months I feel like a transplant patient. Vulnerable and weak. It will pass, but here’s where I am now and at the beginning of this blog I promised to be honest. I’m sure this will pass. I’m eager to see the Gastroenterologist for more information. Knowledge is power, right? 

Tonight we’ll celebrate CC’s 7th birthday. I’ve made an amazing triple layer chocolate cake, laced with just a tad bit of conjunctivitis. I’m in the planning stages for my one year post transplant party which will include a plaque dedicated to my donor and their family in our churches memorial garden. (Letter to my donor family is below.) And while I’m doing my best to look forward, this week has included the dark cloud of “if I make it to a year”. 

PM me and I’ll send you the recipe for the cake. LG

On November 13, 2018, thanks to the generosity of my donor at the very worst moment of their life, my life was saved. I had been in the hospital, probably for the last time, for four weeks. The likelihood that I would make it to the holidays was slim. My oldest son had written my obituary and my husband and I had planned my funeral. We all laughed and joked, as our family has always done, but no one’s eyes were smiling anymore. 

Thanks to my donor and your family, I have my life back. Every day is special. I’m baking and singing and doing all the things I dreamed about doing with my grandchildren. My donor, your loved one, gave me back my family. Please know that I do not take lightly the gift I’ve been given. I am doing everything I can to ensure that my new lungs and I will be around for a long, long time.

And while for me and my family November 13 will always be a day of celebration, I know that for your family it must represent a day of unimaginable sorrow. Your grief is never far from our hearts.

This November 16 we will dedicate a plaque to my donor in a memorial garden. Right now my intention is to dedicate it to ‘My Donor and Their Family” If you are comfortable sharing their name I would be honored to include it on the plaque. If you would prefer to remain anonymous, of course I honor that as well. 

I hope the knowledge that this gift has made such a huge impact on so many lives will in some small way bring you comfort. I will always be grateful.