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 Left Kidney

After reading several stories recently about individuals on dialysis and their different methods of seeking a kidney transplant, I have decided to join the growing crowd.  So I am modifying my blog, which I started as a series of stories about my kids when they were little.  Then, over the last three years, my blog has drifted to focus entirely on me.  And my kidneys.

I have gone through three years of transplant testing and during that process, it was discovered that I had a tiny spot of cancer in my left kidney.  Eventually, I had both kidneys removed because they were so large (18 pounds total).

I have been on dialysis for three and a half years, starting in September of 2009.  I lost my job as a result two months later.  Since then, it has been almost a full-time job just to balance my weight, the fluid I consume, my blood pressure medications.  It's a rollercoaster.  I will have a couple weeks, where everything is just right.  And then something will tilt and I'll have extra weight or higher blood pressure or my blood pressure will crash.  Then I'll spend a few weeks adjusting my weight again, adjusting how much fluid is removed during dialysis, and how low my blood pressure is when I end my session.  And finally, again, I'll reach a point where I think, this is just right.  But Murphy's Law prevails.  And none of us (my seatmates) is exempt.

So - this blog is slightly revamped now.  We'll see how this goes.

To Be, Or Not

Yesterday, my seatmate at dialysis talked to his doctor about planning on NOT coming back to dialysis because the site in his arm is so pitiful and they spend about an hour trying to get it to work and the blood flow to be adequate enough to dialyze.  I instantly went back to when my Dad had the same conversation.  On the 10th of December, 1993, the docs told him they had fixed all they could fix and this was the last spot on his body that could be stuck with the two needles required in dialysis.  That was a Friday and it was my older Army son's 21st birthday, stationed in South Korea.

Dad announced to us on that Friday that he wasn't going back to dialysis.  Nine days later, he died, after spending a little over a week indulging in everything the center said he should avoid.  Coffee.  Nuts.  Strawberries.  Orange juice.  All the liquid he wanted to consume.  He was happy and actually the healthiest I had ever seen him.  Whenever Hospice came in to do his vitals, I wondered if he was making the right decision - but in the end, yes.  I think it was the right decision.  He had little quality left to his life.  Sleeping most of the day.  Being confused when he was awake - thinking that whatever was on television was happening in reality.  Using a walker.  Wetting himself.  Not being able to eat much of anything and then throwing up when he did.

So - I related to my neighbor but was sad about it too.  This one decision (to not come back because our sites quit working) is one we all face eventually.  So far for me - I'm doing great.  It's been three years (thirteen for my neighbor).  Transplant is the only saving grace and for my friend that is not an option.  He is too ill, veins too wrecked, to handle a transplant.

Then today I got a letter from the transplant center stating that I was **back** on hold because my finances will not be able to handle one of the non-covered anti-rejection drugs I am required to take.  With my insurance, that one particular drug is still $550 out-of-my-pocket a month.

It's daunting to think that maybe I'll have to make this same decision some day.  To not go back to dialysis.

Writing About Nothing

Sheesh - I've written nothing in the new year.  Bet you think I fell off the earth or something.

I cannot believe how time flies when I have nothing but mundane things to do with my day - all boiling down to dialysis.  I really, really try not to make it a priority in my life but on the other hand, it is a necessary evil to make it my number one focus.  There's all that food to NOT eat.  There's the blood pressure.  The heart rate.  Will the sites work TODAY.  And then, after having my kidneys removed, there's all that water to NOT drink.  The rule of thumb for my little food diary is, "if you like it, you can't have it."  Foods with potassium (think any citrus fruit, chocolate, dairy).  Foods with phosphorous (meat, eggs, dairy, actually anything you can think of).  I am limited to 20 oz of fluid a day (including soup, jello, ice cream, ice, alcohol).

I am my own bobblehead.

I plan out my food and liquid.  So - if I have dinner with the girls on Wednesday - I won't eat all day but I'll enjoy a steak and salad with my friends AND a coveted cocktail.  Lemon Drops are only 4 oz.  Woo Hoo.

In the meantime, I'm not writing.  Why is that?  Things have shifted so much in my life and the creativity gene just isn't functioning.

Just know that I am plugging along and actually feeling darned healthy!  If I could just have a second brain to worry about all that icky potassium and phosphorous and sodium stuff.