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Apr 28-May 04

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I have been home for a full day! Fifteen days post transplant and I’m home... Wow. I keep being told that this is really unheard of and my overall recover has been amazingly good... We were prepared for possible months of being in the hospital with complications. I’m very grateful and incredibly lucky. 

 

I got home the night of 11/28 around 7:00pm. Mom and I sat down and sorted, organized, then sorted again all of my 24 NEW prescriptions I will be taking. I have a week long pill box that holds four slots a day and it gets pretty full... Organization is going to be key, but it should be fine. I also have a new routine of checking my lung function and other vitals I have to do, as well as watch my diet to make sure levels of different things are balanced. 

 

Someone will come to the house to draw my blood twice a week to check all my levels and I will have a few appointments coming up in the next few weeks for now. A nurse is also coming tomorrow to check in and see if I need anything additional like physical therapy or something regularly. Besides that, I am instructed to recover at home for the next 6 weeks or so with very limit contact from others and restricted from going pretty much anywhere not absolutely necessary. This is going to be the hardest time for my body to adjust to being immunosuppressed so that it does not reject the new lungs, so it’s very important I try to stay healthy. My body does not have any defenses to fight off anything. After about 6 weeks, I will still be very limited and at a high risk for the next 6 months to a year, but will be able to do more things if I take precautions by wearing a mask and other things eventually. I will always have restrictions for the rest of my life with being very, very conscientious of germs and those sick around me. 

 

My health may change at any time and it is very common for people to go right back to the hospital after they leave during this process. There are so, so many factors involved. I’m prepared to have to go back, if needed, but hopefully we can hold off for a while though!

 

The staff that took care of me at Froedtert Hospital were all amazing and helped me so much. I have been very lucky in my recovery with it being very fast and a great outcome so far. So many other transplant patients go through so much more than me and that amazes me. It’s hard to describe this process overall unless you experience it... but there is so much to it. 

 

I also think about the family of my donor and hope they are and have been able to grieve healthfully and as well as expected. It is not like the movies where we find out information about each other or meet at the hospital. I have no idea who the person was or even where they lived. They could have been as far as 250 miles away. Any contact between the family and recipient of the organs would be far down the road and would only go through our centers if both parties agree. Either way, they are still in my thoughts and I hope they are able to know that they have saved my life. 

 

Thank you friends and family for caring and checking in. It means a lot to see all of the love. Time to recover and start a new life. Should be exciting. 

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