Mentally preparing for BAD NEWS . . .

I think in general I am an optimist. 

I jump at opportunities.

I try new things.

I always figure that I can emerge at the other end of an opportunity relatively unscathed . . . or affected in a way I can deal with. And recover from.

Putting my optimistic nature aside for a moment. Sometimes I think it’s necessary to be pragmatic.

(Indulge me.)

Some moments demand a realistic analysis. I am approaching one of those moments.

July is a HUGE month for me. This July I will find out if I’m allowed to get back on the transplant list to receive a second kidney transplant.

This is a HUGE DEAL for me.

A little backstory. For clarification purposes . . .

In July of 2011 I was diagnosed with Thyroid Cancer. It was small (2mm), detected early, removed and there was no need for radiation or chemotherapy. (Thank God (!!!!) because it happened only four months after my cardiac arrest and I was too depleted – mentally and physically – to deal with any more medical “stuff”.)

When someone on the transplant list has cancer my particular transplant program takes you off of the list for two years. If at the end of those two years you are deemed, “cancer-free” you are able to get back on the list.

The good thing about the situation is that even off the list, or in an “inactive status”, your spot on the transplant list continues to rise toward the top. I have been told that because I’ve been on the list for around five years I am quite close to the top and a candidate for something happening soon-ish. Hence, my one year plan.

So, next month I hope to get the clear to be “active status” on the transplant list again!! But because I’m a pragmatist I want to entertain the idea of things going differently than that – just to prepare myself for any outcome.


“Hope for the best but (mentally) prepare for the worst.”

If I see the doctor (an Ear, Nose and Throat specialist) and she does not give me an all-clear that I’m cancer free there are a few possible outcomes:

1. I will deal with the cancer situation first. Continue doing dialysis for another two years. Get tested again in July of 2015 and hope for an “all-clear” then.

2. The diagnosis of cancer, again, could void me as an candidate for transplant. Period.

I will take a moment to clarify that last point . . .

There are people who live happy, productive lives with kidney failure knowing that they must do dialysis forever with no hope of a transplant – for whatever reason. These people have medical circumstances that make the option of transplant not possible for them.

So . . .

Either of these prospect SCARE the crap out of me but being honest, they are prospects that I should consider. Just to be safe.

Should either of these scenarios happen I will have a lot to think about.

For one I have continued this exhausting aggressive dialysis schedule with an end-date in mind. Believing that I would not have to keep it up forever. That notion would change. I would have to make peace with maintaining this schedule up permanently. I believe if I revert back to a 12 hour a week schedule I will feel unwell, I will not be able to maintain my fitness and professional schedule and I will possibly undo the benefit I gained to my heart function and physiology. Not good outcomes. 😦

In July I could face the possibility of either doing two more years or life. (This is sounding suspiciously like jail time, huh??)

Like any time of lost or deferred dreams I would need a little time to mourn. I could anticipate going through all of the emotions associated with grief and loss. And eventually . . . when I’d be ready to . . . I would accept my fate.

Worst-case, I think I’ve give myself a time-line. I would decide to live with an aggressive dialysis schedule for a finite number of years. Maybe 10 years? I could wrap my mind around keeping this schedule up for 10 years. My life would have to change between now and then though.

  • I would have to begin traveling with hemodialysis. This is something I’ve chosen not to do because of my concern for safety.
  • I would research places in the world with the best quality of life while on dialysis and consider moving? I hear that Japan and Singapore are amazing options. The United Kingdom seems like a great place? (BTW, I am considering advancements in dialysis technology, support for patients, health-care, general quality of life factors here.)
  • I would keep a very close eye on the innovations in dialysis. Wearable dialysis machine. Artificial implantable kidney – that uses high-tech filters and blood pressure to replicate the function of the kidney. Whatever science and research has to offer I am interested in learning about and possibly trying. (Optimist!!)

Today’s post has been a peak down a dark and terrifying corridor, for me. In all honesty I PRAY I don’t have to entertain any of these options. At all.

Thinking about this stuff can almost make me sick to my stomach but I think I have to consider and accept these possibilities in order to move forward.

Again, I am ultimately an optimist who believes that I’m going to be cancer-free this July. Then I’m going to get the call for a new kidney. Then I will get a perfectly matched kidney that begins working on the operating table. And after that I will have no less then 25 dialysis free years to live and travel and pursue my goals.

In the meantime, all prayers and positive energy are greatly appreciated. (Don’t worry, I am praying for myself too.)

Keep you posted. July will be here in no time.

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2 Responses to Mentally preparing for BAD NEWS . . .

  1. says:

    Karen, you simply amaze me! You are a very strong person, you truly are and I really respect that you share your life with everyone on here. My thoughts and prays are with you every day.

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