Learning Dialysis on a day to day basis

Spoiler alert: if you don't want to hear about the bathroom stuff....skip this entry.

John has gone to get me an enema. This is going to be fun.

For the past 2 days, it has taken 2 hours each time that I exchange fluids. Exchanging fluids, draining my belly and refilling it, are the essential procedures of the Peretenal Dialysis. It should take 20 minutes. Everyone seems to think it is the lack of bathroom time - so I'm going for the drastic action as suggested by my very nice nurse. Really, this is nothing, some of my friends do this for fun.

So I'm doing the exchanges four times a day now (starting yesterday) and the time it is taking is testing teaching and showing me patience. I don't know why I said that because if I'm getting tested - I am failing right now.

Ok, I am going to need visitors during these exchanges, I think.

Kim took me on my first walk yesterday with a belly full. I really am unable to put into words how beautiful it was. Kim, the best Safari tracker ever, saw a buck by the water. The sparkling off the water almost hurt my eyes. He was a hunk. I've never seen a buck inside Radnor. And I've got new appreciation for the girl friends that have been pregnant. I'd say my waddle represents about a 4 month pregancy gait. I'm working on the grace that I've seen Tania and others have. I got better-less waddly- halfway around the lake; the pain subsided. But I looked like a duck.

Today I have been hooked up to the pole and drain bags since 7:30am. It is 10:48. I'm a little shocked by the time. I fell asleep for awhile, John went to get me a paper. The drug store run as well. He's the solvenator, he says.

An old friend walked in during a low point yesterday. I was just at the very bottom of a crashing blood sugar and I was particularly uncharming at the moment she walked in. A little private pity party with tears and all - you should of seen her glide in and comfort me. "God draws straight lines sometimes with a crooked stick, " she said. But the thing that stuck with me is what her husband taught her: TRUST ACTIVATES GOD.

It is so true. My very belief in John has helped me be open to his crazy ways. Same with someone working for me or in a friend. A fabo saying, I need to learn embroidery while I'm stuck here on the couch!

Come see me.

First Dialysis Training: one month ago.

Just found out that my FOURTH blood work test came back worse. They rechecked 2x last week at the endo's and we were hoping that flushing liquids and basically drinking water like a freaking fish would lower the creatine. Oh well My parents rushed in from the 'burbs to go to prepretraining: We saw a predictable but informative film on the many choices for dialysis with a q and a following. I've got to give it a thumbs down, just for the depressing content. Though they managed to be upbeat and loaded me up w/some info.

My sweet mother asked some of the questions over again; it is all confusing. And she asked lots of questions about traveling....finally, I interupted and attacked my biggest supporter and said like a horrible spoiled child: "Let me just get this out on the table (to the nurse teacher): my mother doesn't want me to travel and it is the love of my life" She cringed, then I cringed myself. How can i be so mean to her!!!! I went on...defending myself, even though she wasn't even attacking me!

Later things were better though I felt like we were driving to a funeral on the way to the doctor's office and coming home w/my parents. Today I'm great because Felipe came to visit (pure humor) and Kitty came by (pure sympathy). I actually cannot believe that I am sick, except for the out of breath when hiking and biking!!! Lordy Need to talk to someone on PD (is it Pera.dailysis? there are 2 kinds) and/or Home Hemo....those are my choices...

Meanwhile, my brilliant and beautiful pro-cheerleader niece, who is also in an elite nursing school and working another job full time (i appreciate her efforts, my god)...is upset because they are only featuring her in a small photograph on some marketing material, and not a full page!!! If she only knew how well she is doing in life....she is amazing. Her brother is the super stealth smarty, he is not the showoff like me, he slides under the radar and is beloved. I stalked him on Facebook (like a crazy old aunt would) and he has 1million cute friends on there, mostly girls.

Neprhologist office day

Last thursday I went in with the expectation of having blood drawn (for me and for UNOS transplant list). I also had asked Kim - Dr's R's nurse, to help me get home hemo education for home dialysis. Dr. R told me that she would do that 2 weeks ago. When I followed up, she seemed to understand and promised me she would get the 3 other things done. (this was 8 days before my visit)


The shot nurse was surly; she stomped out of the room when I told her (I didn't ask) that I would be pricking my own finger (my needle is sharper than theirs). She was surly when I asked her about the things Kim had promised a week before. She was surly when I told her I didn't think I would take the shot. because my hematacrit (sp?) was 11.6, I didn't feel any low oxygen or red blood cell symptons. I had discussed this w/the dr earlier in the year. She gave me the shot.

By the time she retrieved Kim at my request ("sorry, she's with a patient, you can call later." "i can wait, " i said) I was crying. How can I make a decision about which dialysis w/out the promised "education" and w/out the bloodwork?

I asked her to have Dr. R call me. She made some excuses and told me that I was just upset because I had to go on dialysis....I was, but I was also upset because she hadn't done 3 of the 4 things that I had asked for....twice.

Here is the kicker: Kim handed me a letter from the Procrit (EPO) people and said, "you've had the shot, right? Well, you are supposed to read this, but you'd better not read it today because you are so upset." Frustrated, I said, "Is this the warning about heart attack and sudden death that was all over the paper 6 months ago? That is why I had a meeting w/Dr. R about lowering my own criteria for this shot..."

Sure enough, the letter was dreadful with proven dire consequences for users of ProCrit.

It is enought to make you think: class action. uuuuugh. I need to read a little more Anne Lamott later today...

here is a quote from Ms Lamott, one of my favorites: "Laughter is carbonated holiness. It is chemo. So do whatever it takes to keep your sense of humor. Rent Christopher Guest movies, read books by Roz Chast and Maira Kalman....Reread everything Molly Ivins and Jim Hightower ever wrote. Write down that great line of Molly's, that "freedom fighters don't always win, but they're always right." Tape it next to your phone. Call the loneliest person you know. Go flirt with the oldest person at the bookstore. Fill up a box with really cool clothes that you haven't worn in a year, and take it to a thrift shop. Take gray water outside and water whatever is growing on your deck. This is not a bad metaphor to live by. I think it is why we are here. Drink more fluids. And take very gentle care of yourself and the people you most love."

She was talking about the state of affairs for the country and the election, but as usual, her words seem to apply to me today.

Many thanks to Kat for the beautiful Lamott essay, which led to another one and another...

Pushing through the systems: transplant & dialysis

OK OK

i heard from Vanderbilt. Note to self: make food to carry to the nurses over there. I've started off with a bonding experience...my nurse coordinator goes to Percy Warner like me!!! They want me to see 2 doctors and get more tests. here is a list of what I am waiting to be scheduled:

See Surgeon for Dialysis catheter implant surgery

• Dialysis center pre pre training on Hemo at Home (so I can make ed decision)
  renew the stress test
  
• Dual transplant surgeon - never had a meeting, so that is my next meeting.
  "Red top" vial of blood w/in a few more days...must get a deadline
  
• Kidney doctor again for EPO test and shot
  guess I've had about 25 doctor's meetings and clinic visits in the last 2 months...over 20 vials of blood and about 30 total tests...not so bad. i can do this!
  

what i've learned. yesterday, when i felt bad and sorry for myself, Amy listened patiently to my list above and said, "all education is good" and I didn't listen to her. I was still hurt and brooding and frustrated! But today I am strong and happy and I know I have to get these meetings scheduled just for the education. I must remember to listen when I feel poorly and if it doesn't sound good to me, which it didn't yesterday! I must remember these words from friends for later encouragement. I have faith that I will feel better and I can handle difficult ideas later.
What else I've learned: a dose of good comedy and better yet, a dear friend stopping by, is the best medicine. Pete came over with Sag Paneer and Arrested Development. Manna from heaven.

Other best gifts: Kim called, Amy,Erica & Kitty, 2 long lost friend....all called today. Wonders, they all are

Dialysis: More Education Today

Just got back from a Davita education - it was so much better than the last co that we went to. Felipe went with mom dad and me. John is out of town, but this was such a good meeting. I got a bit sad that he wasn't there, because he sees things very simply and w/out emotion.

Mom, Dad & Felipe were great: every question that they asked was something I would've never thought of. I was floored by the passion of the nurse Toni. She kept saying how much she loved education; how much she loved her job. Her supporting staff were great too; they handed props around and brought in other patients just flat off the floor for me to quiz.

UNFORTUNATELY, noone pushed me toward one kind of dialysis over another. I'm a little more confused about which type to go with: PD or home hemo. Big differences and big pros and cons for each. I"m leaning toward the PD, since I can direct my own schedule. It is crazy that such a small thing can throw me over, cause i can control the schedule somewhat on home hemo...I just have to have a "care partner" here with me during the 2 hours..... PD is NINE hours though....boy.

PD has 4 in or 8in catheter coming out of belly; Home hemo has big lumpy button accesses in the arm. PD has big gallon bags of glucose and dialysate to pump into stomach everyday, thus screwing up the blood sugar and forced weight gain. (everyone says, think 5 months pregnant) I don't want to be vain about this, but my mom is right to help me think about the restrictive feelings during exercise with a really big stomach.

Hemo deals with blood; apparently there are lots of blood supplies to throw away, bloody messes occasionally etc. Home hemo machine is 70 lbs, plus has a big machine under it about the size of a wine fridge.

Both can travel, but not that easily....

PD: everyday, 9 hrs per day (while sleeping, ideally). good for work life.
Home hemo: 2 hrs -3 hrs, 6 days /week (but a trained person has to be there)

PD: training is 5 days
Home hemo: required minimum 15 days. my nephrologist says that you practically have to become a dailysis nurse to operate.

someone help me decide!