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Different Disease, Same Scary Pattern

Happy Belated New Year to All! 

Most of you who have read my book, “Rowing through Cancer”, know about my horrific journey battling stage 4 cancer, years of going through treatments and the roller coaster ride looking for the right medical facility to help me.

Since November 20, 2018, John and I have been excruciatingly busy helping my very sick father who was diagnosed with Congestive Heart Failure.  His heart was pumping at 10% and his lungs were filled with water to the point of almost drowning.  Being a stubborn 86-year-old Maine farm boy, it took us weeks to get him to the ER.

During November, he was in and out of the local hospital several times until my very smart husband saw that this was the same pattern as mine.  They couldn’t help him after a certain point, and he needed to go elsewhere.

The cardiologist recommended getting a TAVR procedure in Tampa, and we waited for weeks for an appointment to be made, (eerily like my experience when I was first diagnosed) but when it finally came it was a month away for the initial consultation and meanwhile, Dad was quickly deteriorating and getting weaker and weaker and struggling so hard to breathe. 

John found several places in the Orlando area that did this TAVR heart valve replacement and called all of them. He was contacted immediately from Orlando Regional Medical Center Heart Clinic and an appointment was set up fast. Dad was admitted, and it took a month of hospitalization to get him stable and able to get surgery. 

One week before he got out of the hospital, his initial appointment to discuss a TAVR operation in Tampa was coming up.  I called and cancelled and told them he had his TAVR done in Orlando.  He never would have lived to make that appointment.  There was no urgency involved in that appointment.

When you or a loved one gets sick, you must become your own advocate or find someone to help you see through the mirage.  If it doesn’t look like anything is being done on a timely basis, or your gut feels like something is terribly wrong, or the answers aren’t coming—it’s time to get out of there and find a new place!

No hospital will tell you they can’t help you.  They do their best, but if you aren’t getting anywhere with your issue, you need to get out of there and find a facility that can get it done!  Don’t fall into the trusting your doctor game, because this is your life he or she is dealing with!

This road has been a long one and continues.  We took Dad home on Christmas eve and it was the best Christmas present received. He is recovering slowly, but I know he will make it.  They say the acorn doesn’t fall far from the tree, and in this instance, I know it’s true.

Here’s to your Health and Happiness Always,

Alis

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