Journal entry by Michelle Lehmer Chiafulio —
Update by Maria Brooks
55 days!
Never would I have dreamed that when I came to Johns Hopkins in Baltimore on October 20th for my miracle liver transplant, that I would still be here almost 2 months later. God's plans are always different from our own.
When I was diagnosed in 2017 with PSC and placed on the miracle "recipient transplant list" we were told that generally you spend 7-10 days in the hospital once admitted for a liver transplant, before returning home to recover for 3-4 months. God had other plans for our family and boy were we thankful that I hadn't been discharged yet before the liver failed that had been transplanted.
To the glory of God that I was able to be relisted and transplanted AGAIN 2 days later...what a beautiful miracle!! But this time instead of the staple line scar, the doctors had to open up my chest which has left a giant wound requiring weeks and weeks to heal. And a lot more care in the home once I leave the hospital. I will need an eventual skin graft for the stomach/chest which we don't believe will be covered by our insurance.
Today! The doctors have been pleased with my progress and instead of painful daily wound changes and regular trips to the OR to clean the wound, they have replaced it now with a wound vac. It's basically a giant sponge cut to fit the entire wound area and incredibly painful to take out to clean and repack. It applies negative pressure around the wound to promote faster healing.
Here's the great news...THEY ONLY HAVE TO CLEAN IT and change it TWICE/WEEK!!! This will be such a relief.
We are still working on stairs which is my biggest challenge at this point. I cannot go up stairs without assistance. The fluid in my legs has improved dramatically which I am hoping will be the start of gaining more strength in my legs.
What's next???
I am hoping to be home for Christmas!!! My kids are tired of mom not being at home and are struggling with me being gone this long! It has been very hard for them.
We will just have to see how the doctors feel in the coming days with my progression in mobility and nutrition. I am receiving assistance from a feeding tube to get everything my body needs for now as I can only eat a small amount of food in one sitting.
Never would I have dreamed that when I came to Johns Hopkins in Baltimore on October 20th for my miracle liver transplant, that I would still be here almost 2 months later. God's plans are always different from our own.
When I was diagnosed in 2017 with PSC and placed on the miracle "recipient transplant list" we were told that generally you spend 7-10 days in the hospital once admitted for a liver transplant, before returning home to recover for 3-4 months. God had other plans for our family and boy were we thankful that I hadn't been discharged yet before the liver failed that had been transplanted.
To the glory of God that I was able to be relisted and transplanted AGAIN 2 days later...what a beautiful miracle!! But this time instead of the staple line scar, the doctors had to open up my chest which has left a giant wound requiring weeks and weeks to heal. And a lot more care in the home once I leave the hospital. I will need an eventual skin graft for the stomach/chest which we don't believe will be covered by our insurance.
Today! The doctors have been pleased with my progress and instead of painful daily wound changes and regular trips to the OR to clean the wound, they have replaced it now with a wound vac. It's basically a giant sponge cut to fit the entire wound area and incredibly painful to take out to clean and repack. It applies negative pressure around the wound to promote faster healing.
Here's the great news...THEY ONLY HAVE TO CLEAN IT and change it TWICE/WEEK!!! This will be such a relief.
We are still working on stairs which is my biggest challenge at this point. I cannot go up stairs without assistance. The fluid in my legs has improved dramatically which I am hoping will be the start of gaining more strength in my legs.
What's next???
I am hoping to be home for Christmas!!! My kids are tired of mom not being at home and are struggling with me being gone this long! It has been very hard for them.
We will just have to see how the doctors feel in the coming days with my progression in mobility and nutrition. I am receiving assistance from a feeding tube to get everything my body needs for now as I can only eat a small amount of food in one sitting.
Please prayerfully consider giving what you can to our GoFundMe fundraiser as bills start to arrive from the hospital that are not covered by our insurance. You have no idea what a blessing all of the assistance has been so far. Your generous gifts have been overwhelming and significant in helping us prepare for what is yet to come.
God bless you my friends and family! Love you all so very much!
Maria
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