Cheaters

Death is all around us.  Sometimes it hits us in the face.

In March, my dog Pugsy died.  Less than a week ago,  my dog Elvis died. Elvis was originally my mom's dog that I inherited when she died from pancreatic cancer five years ago next month. Tomorrow is the six-year anniversary of my dad passing. Next week is the anniversary of the death of my boyfriend's mom. 

To top it off,  Monday,  the man beside me at dialysis died during treatment.  I have known him for a while,  even though I don't know his name. Some called him "Slim". We exchanged pleasantries for the most part.

Monday,  he arrived in a wheelchair,  instead of his usual walker. His beautiful smile and hello were replaced with a blank stare. I noticed his super-skinny leg sticking out of his pant leg.  The normally spry fellow seemed frail.

About an hour into treatment, there was a great commotion next to me.  Chest compressions.  Defibrillator attempts. Emergency personnel. It all happened so quickly. He was out the door on a stretcher in a manner of minutes.

Death tends to be an uncomfortable subject. It conjures up feelings of grief.  It makes us face our own mortality. We all know death is coming for everything and everyone. Dogs die.  Parents die. The commonality of it doesn't make it any less difficult.

Those of us on dialysis are cheating death. For whatever reason, our kidneys turned against us. In another time or place,  that would have meant death. Through every treatment,  we steal another day. Eventually, cheaters get caught. But until then, I'll keep cheating three days a week.

My ugly arm

So I went to Publix Saturday, and I think about 1000 people stared at my arm.  I hate being stared at.  I hate any negative attention.  Of course my arm looks like some freak accident.  For those of you unfamiliar with a fistula in an arm,  it begins to bulge after some years of use. I have two large swollen humps on my upper arm.  They are discolored and strange-looking compared to a regular arm. I usually wear sleeveless shirts because they are more comfortable.  Tight clothing can also restrict bloodflow and cause clots. I realize that this can make people uncomfortable. My fat, ugly arm sticking out of my sleeveless shirt makes people uncomfortable. Well,  my arm makes me uncomfortable, physically and emotionally. You staring at my arm makes me uncomfortable.  Someone sticking giant needles in it three days a week is uncomfortable. Ripping tape off of it over and over again is uncomfortable. I'm sorry that you have to look at me.  I'm sorry that I'm making you wonder what the fuck is wrong with me. Unfortunately, it is the way I stay alive. I wish you understood. Maybe then you wouldn't stare. I know you can't help but notice,  but you don't have to stare. I'm uncomfortable enough.

Oh, I Found the Statistics I Thought I'd Lost

According to the National Kidney Foundation at www.kidney.org:

• There are currently 121,678 people waiting for lifesaving organ transplants in the U.S. Of these, 100,791 await kidney transplants. (as of 1/11/16) 1
• The median wait time for an individual’s first kidney transplant is 3.6 years and can vary depending on health, compatibility and availability of organs.2
• In 2014, 17,107 kidney transplants took place in the US. Of these, 11,570 came from deceased donors and 5,537 came from living donors.1

On average:

• Over 3,000 new patients are added to the kidney waiting list each month.1
• 13 people die each day while waiting for a life-saving kidney transplant.1
• Every 14 minutes someone is added to the kidney transplant list. 1
• In 2014, 4,761 patients died while waiting for a kidney transplant. Another, 3,668 people became too sick to receive a kidney transplant.1

CITATIONS

1. http://optn.transplant.hrsa.gov/

2. http://www.usrds.org/2015/view/v2_07.aspx

Facts and statistics provided by the United States Renal Data System, UNOS, and the U.S. Department of Health & Human Services Organ Procurement and Transplantation Network (OPTN) and Scientific Registry of Transplant Recipients (SRTR) Annual Report.

These statistics do not take into account the number of dialysis patients, like me, who do not qualify to get a transplant. According to the US Dept of Health and Human Services, at the end of 2009, 398,861 ESRD patients were being treated with some form of dialysis. So, only about a fourth of people on dialysis are eligible for transplant.

Penny for Your Kidney?

I just lost what I'd been writing to a Windows update restart.  Well, it was kind of boring anyway. I was writing about transplant statistics and such. Basically, about a fourth of people on dialysis are eligible for transplant. I am in the 3/4 who aren't. Also, there is a 65% mortality rate for people on dialysis for five years. This September will be my five year anniversary, and I hope to beat the statistics.

I stopped writing a while back after someone named Igor, I think, offered to sell me his kidney. Thanks, but I'm not in the market.

1. Who knows if we'd be a match, Igor.
2. I'd have to go to some country in which they'll do transplant surgery on people who buy kidneys off random guys on the internet.
3. I don't have the money to buy your kidney.
4. I don't have the money to pay for the surgery. Medicare doesn't cover medical costs outside of the US.

There are many more reasons I'm not listing having to do with moral objections to buying organs, etc. It was just sort of off-putting to receive the offer. I'm not writing this blog to solicit organs.

I'll write more soon.

Anemia!

Well, if I didn't have enough going on, I have to have a blood transfusion on Monday.  Yay, me!  I was told Friday that my hemoglobin dropped to 7.6, from 8.3 the week before.  Both are super low; however, below 8 usually means transfusion.  What I don't understand is how I got to this point.  I don't think it's from missing two treatments.  I plan on asking the doctor when I see her Wednesday.  I'm supposed to be getting the meds during dialysis to keep my hemoglobin in the 10-12 range.  Plus, they are making me do a "stool card" to make sure I'm not passing blood.  Ewww.  I should make them do a stool card for not giving me my meds.

My Mom, Update

Most of you know that my mom passed away on May 11th.  I just wanted to update the blog.  I've also been working on something to say about my mom.  Nothing quite captures what I'm feeling, so I thought I'd make it more about her.  :)

Things I wish I could've said at my mom's funeral:

My mom was beautiful and smart, and she thought she was neither.
My mom loved animals, especially her dogs.  She never turned away a stray.
She always wanted to help sea turtles hatch and get to the ocean.
My mom was deathly afraid of bees.
My mom loved Florida State football and would yell at the TV over it.
My mom's purse always matched her shoes.  She once bought a multi-colored purse, so she wouldn't have to change it all of the time.  She hated it.
My mom loved word games, crossword puzzles, Wheel of Fortune and computer Mahjong.
She hated math.
She loved the beach and storms.
She would cry when she saw an ambulance or a car accident, because she knew someone was hurt.
She loved her children deeply, and we always knew it.
She was very affectionate.  We never lacked hugs and kisses.

When she was in her last days, she asked me, "Can you imagine going through this together if we hated each other?".  No, Mama, I couldn't imagine it at all.

As she was there when I came into this life, I had the difficult honor of being with her as she left.  I'd do anything to have her back.  I still can't believe she's gone.


On a dialysis note, I know my mom would've been mad at me for skipping two treatments during the time around her funeral.  I've skipped one before, but never two.  It's amazing how quickly I began to feel like crap physically, on top of all of the emotional hurt.  While it's inconvenient to go to dialysis at times like this, it's not the best idea to skip.  This is a do as I say, not as I do, message.

My Mom

Stage Four Metastatic Pancreatic Adenosquamous Carcinoma.  Quite a mouthful, and quite a lot to digest.  My mom started feeling bad around the end of January.  At the end of March, we were told she had pancreatic cancer which had spread to her liver.  The first of April, we were at Mayo Clinic, hearing those dreaded words.  There is no cure.  There is some palliative treatment, which we are now pursuing.  If you pray, please pray for her.  If you don't pray, please send good vibes our way.

She has always been so strong; it's difficult to see her so weak.  I'm fortunate that I am able to spend every day with her now and help her during this time.  If there's one good thing about being on dialysis, this is it.  My aunt is also here helping, and I couldn't do it without her.

My selfless mom told me that she's not asking ,"Why me?".  She's asking, "Why now?".  She says she's supposed to be taking care of me and her 90-year-old mother now, not the other way around.  She has taken such good care of me over the years; now it's my turn.

On another note, today would've been my dad's 89th birthday.  He died April 20th last year.  We're still grieving Daddy, and now this.  Our family is having a rough time to say the very least.