Clouds, sun, hail, thunder and lightening oh my!

What a whacky day here in Seattle, weather wise that is! This morning was cloudy but Mr. Sunshine came out quickly! After I finished my morning cup of tea, Kerry and I went for a walk downtown. We ended up walking to Pike’s, Market, enjoyed looking at all the fresh flowers , tulips were bright and colorful, and of course, we had to watch the workers throw whole fish back and forth. The were yelling chants and having a good time. I also like walking past all the fresh fruits and veggie stands. Not only do they look delicious the colors are so rich ad vibrant!

After Kerry and I finished our walk, we met up with my mom back at the apartment. The three of us decided to take a taxi to Ballard and explore. We walked around quite a bit, we decided it was time for a pedicure. We picked the right time to take shelter, the sky turned black and the flood gates opened! It started hailing like there was no tomorrow, complete with lightening and thunder. It was crazy!!!!! Glad we were inside! After we finished with pedicures (and yes Kerry got a pedicure too!) we walked next door to a Mexican restaurant called Matador. Very good food! After we finished our meals, it was still pouring buckets so we took a taxi back to our apartment. Good place to be, out of the rain! Now time to relax before I call it a night.

I was asked a great question today, and thought I would share it all of you. The question was “If all goes well and rejection is not an issue, what is the average like expectancy of a person who had a double lung transplant? Also, does the average decrease when the recipient has CF? Also will you always have to take anti rejection meds?”

This past July when we had to take the post transplant class, the average life expectancy they predicted ten years. Although as of right now University of Washington has double lung transplant patients living fifteen years and beyond! With all the new research coming down the pipeline, post transplant patients are living beyond the expectancy rate. Although post transplant lung transplant pool is made up of patients will all pulmonary diseases, not just specifically CF. As far as if the life expectancy decreases in a person with CF, is not really known. It is said that 150-200 CF patients have a double lung transplant every year. Among those who have a double lung transplant with CF 80% survive the first, followed by 50% survive the first five years, and then finally 17% live beyond 10 years post transplant. Although I have read several stories online and have even met fellow CF’ers on Facebook (who have had a double lung transplant) who are twenty plus year post transplant and doing amazing!

Depending on the transplant center some do second double lung transplants where some centers do not. I know University of Washington generally does not do second transplants, simply because the patients will not survive the surgery, or for other reasons left up to Dr. Mulligan and his team. But I know University Medical Center of Pittsburgh will generally accept second lung transplant patients. They have a larger donor pool, and are able to do more transplants per week, then what UW has.

As far as anti rejection medication go, yes I will take them for the rest of my life. No exceptions! Ha ha! I‘ve said this before, I would much rather take handfuls of medications daily then doing eight hours of chest therapy! I am a-okay with that!

I also got asked “which one do I miss more, my hair dresser or my nail tech.” Honestly that is a TOUGH question! Going through surgery I think the amount of gray hair I have, has quadrupled! Thank goodness for hair dye! 🙂 But these “chop shops” up here are killing my nails!!!! So I honestly miss both equally! lol! Can’t wait to get home, so I can see both of them HA HA!

Well tomorrow is clinic day, so an early morning is in my future! Time to fill up my SAMS box, take my nightly meds, and do my nightly routine! Hope everyone stayed dry and warm today!

Until next time……..

~Jen~
“Just Breathe”