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.

My Grace

I was reading an interview with writer Anne Lamott in the November 24, 2012 Spokesman-Review,  regarding her book, Help. Thanks. Wow. (http://www.spokesman.com/stories/2012/nov/24/divine-connections/)

I haven’t even read her book, however, I immediately realized that Help, Thanks, Wow is the way I got through this past summer.  It's how I prayed.

I learned to ask God for help, to let Him help me, to thank Him over and over, again and again, and in the end, exclaimed at the Wow that had happened to me.

This summer was a medical roller coaster of overwhelmingly emotional stress, where I started out in June with maybe the flu, then a kidney infection, then more seriously, a staph infection of the blood and heart, to maybe Open Heart Surgery. 

Then, I had internal bleeding from a tear in my esophagus that required a repair and seven units of blood.

I thought I was going to die.  (Especially when a chaplain showed up.) 

In July I had both kidneys removed (which were about 16 pounds total and not working one whit).

Late in September, I experienced the return of the same staph infection of the blood and the heart, which now showed damage to the heart,

October 5, I had Open Heart Surgery. 

I pretty much spent most of the summer crying for help.  And I mean, I was sobbing to God to help me! Please help me!  And then I would be grateful that God was embracing me and thankful to great doctors and great care.  And finally I would whisper “Wow!” because I was better.

I approached my kidney surgery with an attitude of peace and gratitude.  I knew I had taken my hands off the controls, for a change, and left it all with God.  I sailed through.  And said “Wow!”

I was blindsided in late September (I wanted to write “sideblinded”) by a second bout of staph infection of the blood and heart – and the ultimate pronouncement that I needed to have Open Heart Surgery.  That phrase fills me with trepidation, panic, and fear.  Mentally I am digging in my heels and saying No! No! No!  I immediately went into my prayer mode.  I cried out for help.  I wept.  I told God I just couldn’t handle it any more.  And He said, “Good – I’ll take care of it.”  And I was thankful for such a miraculous recovery from such a miraculous surgery. 

Wow!

~Humbly yours,  Jeanie~