My Heroes are My Kids!
Last updated: August 2022
I developed heart failure and pulmonary arterial hypertension (PAH) during the pandemic. Can you not have the worst luck? I could not get a proper diagnosis due to COVID so I had to wait to get my heart cath until outpatient procedures were again allowed.
My diagnosis: heart failure
In July of 2020 my death sentence was given: go on Remodulin or die within six months. So we started with the normal meds first, but then at the beginning of 2021, I went into heart failure and gained upwards of 35 lbs of fluid in less than two weeks.
I went into Yales ICU and was diueresed heavily losing two liters of fluid a day. I Facebooked the family daily, and all of our lives changed as my Hickman was placed and IV Remodulin was begun. Monthly bills were paid from my ICU bed, and my nurses and doctors cracked jokes when they forgot to replace my potty chair pot and I peed all over the floor by mistake.
Hanging onto life
29 Days is a long time to be in ICU. I didn't get my hair or feet washed. I wasn't happy, but I was alive still. I had a lot of time to think about my mortality every time I heard the code alerts go off and wondered when it was my turn. Would I be next?
I know I am dying. So do my children who are 32 and 23 respectively (the younger is adopted). They don't like speaking about it, but they realize it. Everyone is educated in Remodulin just in case, and even my 4-year-old granddaughter knows that's what keeps Mee Mee alive.
My supportive family
Just recently I had an episode of hypoxia and had to go to the hospital. The most heartbreaking thing is having her come to me when I got home and say, "I did not think you would come home Mee Mee." All three of them are my heroes. They bring stuff to my room, help to get my groceries, drive me to appointments or to the pharmacy or whatever else I may need. I know I am a pain in their ass sometimes, but I also know they love me and worry about me.
I cry a lot worrying about them when I am gone, "Will they do ok?" But then I realize I have taught them all they need to know. They will do fine, especially peanut. She is bright and sassy and she will do just fine.
I love all three of them, but I worry most about my kitties. Olley will grieve for me, and I hope they do not have to put him down. Let's hope it won't be for a very long time. I don't feel horrible anymore so let's think positively!
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