Stuff

Just pausing in my day to think about things.  I am still on hold on the transplant list, because (drum roll), I cannot afford the future co-pays on the future drugs that I will need to maintain my future kidney.

I went through my paperwork for setting up to be on the transplant list and one of the first things it mentions is that I need to have "adequate insurance."  This was before I even started dialysis, and at the time, I had more than adequate insurance - in fact, I had excellent insurance.

But six weeks after I started dialysis, I was let go from my job.  And that meant I would lose my excellent insurance and eventually I qualified for the state health insurance pool (I qualified because other insurance companies rejected me) and it does NOT have prescription coverage.

So - I applied for Part D insurance for drugs I **might** take maybe two-three years down the road, and paying a monthly premium for a policy to cover drugs that I don't take now but might if I have a transplant but then if I have a transplant, I will not be able to pay the co-pays of the various drugs to the tune of about $550 a month (this is from a printout I have of what my Part D will cover).  And that does not include one drug that my insurance does not cover at all that is about $1,500 a month.  However, that drug's manufacturer will give me a discount and a grant once I pay the cost and then reimburse me.  But I have to apply for the grant every month.  It's not like these drugs might give me a "trip" or "high" or something.  They simply fool my body into thinking that the new kidney is not an impostor.

I am thinking that maybe a transplant is not in my future.

On to something else.  I am always reminded, ALWAYS, that being on dialysis is not the end of the world.  Other things could happen.  Other things HAVE happened.  Just because I have one thing, doesn't mean the mean medical gods won't pile on other ailments on my already full plate.  And then I'll learn that someone else has something way worse than a simple little trip to the dialysis center three days a week.  My 36-year-old niece, Jaime (the daughter of my ex-husband's sister and the first cousin to my two sons) had an asthma attack four weeks ago that left her without oxygen for eight minutes.  Long enough to cause unknown damage to her brain.  She has been in a coma for the past 31 days and we, her family and friends, have been praying hard for her.  She has a very sweet spirit and optimistic outlook - she too has had several different medical problems including MS and lately this issue with her breathing.  In and out of the hospital. Always maintaining a sunny disposition.  And now unconscious.  We don't know the damage yet.  We wait impatiently for her to wake up.

So, I am praying that you will pray as you read this.  That God's hands are embracing Jaime all the time, that His Angels are watching over Jaime and are her comfort in this ordeal.  That God's embrace is around her Mom and Dad and sister, Katie.  That we are all in His care and under His wing.  May God heal Jaime totally back to her sweet self.

Attitude Schmattitude

It really is all in the attitude. How you look at things reflects back to you and “becomes.” It’s like what The Secret tells you – that you attract what you think about.

See, I’ve been going through a whole lot of soul searching and introspection about my progressing illness with kidney disease.

Now – I am a strong believer in positive thinking and in the tenants of The Secret. But then I get all muddled up with 1) thinking positive thoughts and 2) being realistic about what is happening to me. So – if I think about my kidney disease and my failing kidneys and start visualizing me on dialysis and then go further into the type of dialysis (tube in stomach, solution feeds through at night for eight hours) or (surgically installed fistula (extra strong vein) in my arm and going to a center every other day for four hours a day), then according to The Secret I will fulfill my “wish” and be on one of those two types of dialysis.

If I DON’T think about that and visualize me staying fit and healthy just like I am now on less than 10% kidney function (which is hardly noticeable at all!), then am I sticking my head in the sand and not being realistic???

I’m damned if I do and damned if I don’t. Oh, what to do, what to do, what to do.

I’ve got little tapes in my head of Dad’s experience on dialysis (horrible at best), Mom’s viewpoint of Dad’s dialysis (worse than horrible and probably why it WAS horrible), my sister’s experience of passing on dialysis and going directly into a living donor kidney (not great experience if you count the bi-monthly trips to the hospital because of this infection and that infection, losing her house because she couldn’t afford the anti-rejection drugs after the three-year Medicare period was done for), and then my brother’s experience of both dialysis and cadaver kidney transplant (both successful – the dialysis being an annoying inconvenience and dealing with impersonal stoic staff and the continuous, never-ending, always going on, needles.

I’ve been playing these tapes over and over repeatedly (too much) in the last six weeks. I have dreaded dialysis because of my Dad’s experience and I’ve worried about a kidney transplant because of my sister’s experience.

Then I spent the day with my brother on Sunday. What a difference a positive person makes!!

It’s in the attitude. Always. It goes back to that very simple concept – attitude. As my sister-in-law said, dialysis is just another little thing you do in your life, like getting up, brushing your teeth, eating breakfast, hooking up to dialysis, going to work, relaxing and watching TV. It just slips in there and becomes a routine deal. For sure, not a small deal but not a BIG deal either. And one day, you will get “the call” and a new kidney and it will be a perfect match because I’m way more like my brother than I am like my Dad or my sister. And I especially am not like my mother, who seemed to drill into all of us the doom and gloom and death-to-all attitude.

I can do this. I just have to burn those tapes.

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