The Beginning of Life After Diagnosis

To everyone touched by transthyretin (ATTR) amyloidosis; through diagnosis, genetics, or love, come sit with me for a moment.

My father's ATTR diagnosis

So, there we had it. A diagnosis for Dad. I suppose it is true what they say. There was a before V122i hereditary amyloidosis, and there was an after.

Family life did change, but not like one would expect. We had waited months to find out what was wrong with dad.

Experiencing mixed emotions

During that time our family experienced just about every emotion you would expect… most of all anxiety.

Although strange, diagnosis in this case brought an immediate sense of relief. Relief from the unknown. Relief from what felt heavy. The ability to finally exhale.

“We could do something about this. Dad, could receive medication and hopefully feel better.”

Beginning treatment

And early on, treatment did make him feel better. In 2014, Diflunisal, that acts as a stabilizer, was considered the standard of care for his type of amyloidosis. The transthyretin amyloidosis world in the US was still years away from the approval of the drugs we now have, except what was available through clinical trial participation.

And stable he was. Back to work. He could breathe. He did not seem as bloated. A bit tired, maybe. But his otherwise normal comedic self.

And if we had just been through a valley, the peak was coming as I was expecting again. We were all looking forward to the second grandchild, this time a boy amongst a family of mostly girls. A distraction to some extent? Possibly.

The new normal didn’t barge in, it sort of just crept so much so I don’t know that we really fully digested the fact that we were changing in spite of the laughter, smiles, and joy over an expanding family.

But changing we were:

• How’s his weight?
• Is his fluid down?
• He can’t eat that, can he?
• When does he go back to the doctor?
• Lizbeth, (his nickname for me), should I participate in this clinical trial?

Identity and illness

I was reminded of a friend that passed a year prior to Dad’s diagnosis, lost to cancer. She used to tell me. “I have cancer. I am not cancer. No one wants to be looked at and treated with pity all of the time, and I am glad you treat me as you always have, Erin.”

What a powerful truth, that I did not know I was going to come back to so often during Dad’s six-year battle. It was hard to adhere to her words when it came to my dad, but I did my best.

Caregiving for loved ones

Caring for and supporting our ill loved ones is so important. But respecting their autonomy where possible in my opinion is that much more. What I have learned in my journey with Dad is that when you or a loved one has become seriously ill, there is a loss of control. You do not know what to make of the body you once trusted. You do not know the potential outcome.

Autonomy and a sense of normalcy

There is comfort in still making the decisions you are able to make, to do the tasks your body will allow, to tell the silly jokes you always did. Why? Identity. A sense of normalcy. So that the mirror their loved ones hold up to them is the person that they have always been. Not constantly met with eyes that reflect what has been lost.

That reflection eventually came for dad with his grandson, Taran Jessie. Jessie in honor of him and life went on.

Let’s continue the journey together.