Video of Peritoneal dialysis

Here is a link to a video on the type of dialysis I am trying to get ok'd for, overnight PD. The video is 6 min long and boring, but shows what I will be doing at night before bed and in the mornings. http://www.youtube.com/watch?v=Evg0K2hhSx0

Currently I am doing the exchanges manually 4x a day with the same big bags of fluid that you see in the video. The time needed still feels like alot, but I feel loads better and am working and catching up on personal things while I wait.

thanks to everyone for the favors and visits, it sure has made the time pass and gets my mind off these exchanges. I am so lucky. What funny stories I've heard....love you all

Updates on progress....slow going

Yesterday was not so good, but it wasn't horrible. After spending 3 hours dialysising in the morning I started trying to clean up the staging area. What a mess. I'm missing several things and the way the house looks is an indicator for future lost things.

I don't even remember why, but I ended up in tears in the shower trying to get ready for my noon clinic visits. My insulin pump was alarming, I had a nephrologist's apt after the clincic visit, I wanted more than anything to get in my bookclub meeting and some real estate work! John told me that he couldn't go with me so I started crying, I suppose to make him feel bad, though I hadn't thought about that at the time. I usually don't want him to witness the pity parties, but I didn't care one bit yesterday. Besides, some good crying is supposed to be cleansing or something, and I was taking a shower for goodness sake. And afterwards I had trouble with the pump. But just as I finished refilling it, I realized that I needed to dialysis again. How would I get it in if I didn't do it quickly - before I left for clinic. And if I didn't get it in, I might not get to go to the gym or later night, the bookclub. OH these 4 exchanges are taking too long.

Sure enough, the ladies at the clinic and my nephrologist all say that this is taking too long That the point is for me to have a life. This 8 hours a day is too much. So they sent me to the Xray.

Results don't say anything except maybe try some more laxitives..... Anyhoo, they added 2 more prescriptions, so yippee, I get $60 of free grociers.

I wanted so badly to be the organizer for the Dean & Debby show next Tuesday for a few of the bookclub women. Plus, my mom would love it, Andrea's mom would love it....I just cannot commit until I get these times down on my exchanges.

I must be patient.

The visits sure do help and I had some of the best last night and today. The prayers work. It is amazing. Nick Thompson's mom has some heart issues, so we must pray for her.

Random thought

I was just thinking today what a daggum shame it is to the woman of Nashville that Tom Amaranti is gay.

Time onDialsis: Working on Patience

I realize that my optimistic personality tends to want to write here. Sometimes my fearful one. I am coming to understand that this dialysis is going to be a day by day, moment by moment thing. The days are not all good, and the dialysis is maddeningly slow. The importance of the bowl movement, the pain, the diet & the continued sudden tiredness ...everything can be overwhelming. (and the stocking and the set up and the sterilization....)

To maintain a normal day, to continue to work, which I have chosen to do, I have to make plans: meetings & appointments. But this afternoon, I had scheduled a friend visit after our work and my workout. But my dialysis got in the way. After a fast drain -out, the fill bag is just hanging there, taunting me. ARRRRGH. I want off this couch! I got up at 6:30 this morning just to try to get them all in today. I worked faithfully on my real estate by computer here on the couch - now I'm ready to go to the gym! But alas, my bowels must still be blocking the fill bag. Barely any of the dialysiate is going int!!!!! OH MY.

And my friend is taking the time to come sit with me for my 3rd exchange, which will now be delayed another 2 hours. What a pain. well, i'm blessed to have company.

Great Day and Packing List

This is going to be my wardrobe for the winter: Jeans, sweats & party dresses that I can wear boots with! (my fat ankles or "cankles" will fit!).

The painting to the right is one of Latte's latest.

Ok - I just felt fantastic today! So I'm hoping I get invited to parties again! I think I was 90% of myself today. Highlight of the day was seeing little boy Robert Harrell who broke my heart with his constant grin. Little beetle was divine. I wanted to hold him so much, but his mom Michelle "Hussein" Harrell spilled the beans about a runny nose. I cannot get a cold right now. Let me tell you, not holding that boy took the same discipline as dialysis care. Another thrill was seeing Jeff, who has been an intimate, instigator, invigliator, interloper & an inspiration for over 25 years (gasp).

Someone asked me today how often do I do this and how often do I do that, so I thought I'd write it all down. I never have, even with just the diabetes part. And John wants me to go on trip - so here is the packing list too:

Change Out List and Supply List for Dialysis & Diabetic Care

TO DO
Exchange Fluids - every 4 to 6 hours (this is the biggy - takes 1-2 hours each time)
Sanitize area - 3x a day Glucose check - 8 x day plus more as needed
Adjust insulin - 5-6 x a day
Renegel - every meal and snack
Sodium BiCarb - 3x a day
Enalapril- 2X a day
Norvasc - 1 x a day Restock bags of dialysate, masks, supplies for exchange Record weight -1x a day take blood pressure & record-1x a day take temperature 1x a day
Stool softener - 1X a day or more as needed
Laxative - as needed but impt EPO or Procrit shot - every 2 weeks
Blood draw for transplant - 1X a month
Blood draw for dialysis - every week (currently)
Kinetics test - don't know - once a month? Iron infusion - as needed (had one this week)
PET Test - don't know - just one time, i think.
24 hour urine -1x quarter?
Insulin - changed in pump every 10 days
Batteries - in pump every 2-3 weeks
Batteries - glucose monitor 3-4 weeks Work out or walk or go to YMCA - everyday! Eat good meal.

TO PACK
Insulin pump supplies including: test strips , catheter sets, alcohol swabs, backup batteries, injector, refill cartridges(insurance is very strict about refills and very expensive. I find myself constantly out of these supplies! ugh)
Glucose monitor: test strips and backup batteries (it is a fortune for test strips, yet the technology hasn't really changed in years)
Dialysis supplies: dialysiate, 4 four pound bags for each day and backup, extra bag, blood pressure cuff, thermometer, mini scales for bags, iv pole, masks, gloves, dressing, tape Glucose tablets & Back up meter

Ok, not so bad! Honestly, writing it down helps. Now I have a list for when I go to the hospital for the transplant. Supposedly I am to bring all meds & Never let the hospital staff touch your stomach catheter, according to my training. My old friend Christy is surgical nurse and she says that dialysis patients that are in for other surgeries indeed refuse to let anyone near their cath. Ha.

So I'm tired from a big day of feeling good and working and seeing friends. I'm almost done with my last exchange and I have 1 more work email to do! Caio!

Long hours for now....

Thank you to so many friends reaching out! I have been delighted by the phone calls and love and hope to return it all.

Dialysis is going a little better everyday. My lord, it takes 8-9 hours a day!!!! Truly unbelievable. Hope to be able to convert to 9 hours overnight by Christmas, but I have to pass a PET & kinetcis tests. The waking hours not on the drain/fill bags are severly limited. And some of that time is prep: cleaning, sterlizing with bleach, restocking & heating fluids, disposal. And the insulin pump/diabetic care continues throughout the day! I now understand why people don't work when on dialysis. Of course, I think I am an expert on time managment so I'm learning do my computer work and work calls, etc, while I am draining/filling. Yesterday was the first day that I sat at my desk during the process. I forecast that I will be doing that from now on. I have a better understanding that my work does make me happy.

The symptoms of kidney failure are so weird and encompass so many systems of my body. I've mentioned ad naseum some of them. They are starting to go away very slowly(John is especially happy that some of the GI symptoms are subsiding), and the best thing I've noticed is a better sense of well-being most of the day.

I was reading in "The Curious Incident of the Dog in the Night" about animals vs. people. Since I am stuck on the couch right now, I'm going to paraphrase; the narrator is describing the difference between dogs that are wounded and people: If a dog breaks his leg and he has surgery and pins in the bone sticking out afterward, he will still happily chase a cat when he sees it, but a person with the same surgery thinks about the pain in his head. The human imagines the bones crushed, the pins in his leg, the days of pain ahead, etc. And this fretting can be a great part of my day. When my stomach hurts or my legs cramp up, I suffer through the pain, yes, but I am worse for the worrying. The stomach aches torment me with thoughts of hospitalization for Peritonitus (common for my type of dialysis) and a canceled transplant. The severe leg cramps that start with wierd vibrations in my leg (like the warnings of an earthquake) threaten to keep me up throughout the night.

I have recently gotten better about relaxing through all of this. I'm letting the fear and worrying go. Luckily, I've had some practice with insulin overdose throughout the years. (I'm one of the only type I's my age that I know that has never completely lost conscienceness.) Tara Brach says that any worrying about the future compromises today. John Lott himself is a perfect example of living in the moment and envied for this by some. I truly want to stab him sometime when he won't partner with me in my occasional anguish over some business something or other. ( I have argued that worrying equals action...! Safety!....what do you think?)

So I actually feel relief this morning and really good and especially nice: No Worries....well maybe just a sqeeky little voice.

Messages from friends

This came in just now from my friend India, who is traveling in India for a month:

"Salaam from the new Indian Elephant Polo team!!! India is amazing!Just heard you were waiting again - thinking of you and sending love and the blessings of the Hindu god, Ganesh, the remover of obstacles!"

I hope to post the picture she sent!

Studies and research

Tuesday morning: I am sitting on the couch doing the big switcheroo. Draining the bag and filling the bag. I'm getting the time down to 1 hour for each exchange and am work done while sitting here. I'm returning calls and emails, setting my schedule for the rest of the day. I do want to make this time useful.



I've done more research on the Peritoneal Dialysis, and reading these papers often leaves me more confused than before. For instance, I was trying to find out how much glucose is going into my body and is absorbed, so I can get my insulin dosage correct. This is the third article I read: (skip to the highlighted parts):





Background: Diabetic patients often have reduced insulin requirements when they progress to renal failure. Since peritoneal dialysis (PD) solution contains glucose, the insulin requirement of these patients often increases after commenced on PD. However, the change in insulin requirement has not been studied systematically.


Methods. We study 60 consecutive patients (32 male) with diabetic nephropathy newly started on PD. Their insulin requirement before and 6 months after initiation of dialysis is compared. Clinical factors affecting insulin requirement are explored.
Results. All patients received a standard 6 l/day dialysis exchange. ... The average dosages of insulin 6 months before and after PD were 0.27 ± 0.28 and 0.37 ± 0.29 unit/kg/day, respectively (paired t-test, P < r =" –0.307," p =" 0.017)" r =" 0.284," p =" 0.028)," r =" 0.433," p =" 0.001),">the dosage of insulin increased by 1.5 ± 11.1 unit/day. Each extra 2.5% 2 l exchange results in a 7.5 unit/day (95%CI 3.2–11.8, P = 0.001) increase in insulin requirement.
Conclusion. Diabetic patients have a minimal increase in insulin requirement after initiation of PD per se, but the dosage of insulin increased markedly after exposure to hypertonic glucose solution. Our result provides a basis for the dosage adjustment of insulin in diabetic patients newly commenced on PD.



Did anyone get that? Is there a math babe out there that can help me with that calculation?



The difference between 1 unit and 11.1 units/day is enormous for me. One extra unit can give me severe hypoglocemia. So does a scientific study of this nature really help? Hmmmm



I found another article that demonstrates weight game from 10% to 30%. That is quite a range.

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.

FalseSo Alarm

To Pier & Everyone:

It was a false alarm. Up all night - more about the calls later.

Call for a Kidney

I was eating a grapefruit, so happy with my little dinner. You'll never know how much you love grapefruit until you know you can never eat one again. I'm not to eat one after transplant.

The call came.

It was 8pm. I was getting ready to watch The Office. The caller said "This is Dr David Schaefer" and I dropped my grapefruit. They have a potential kidney-pancreas for me.

I am to be there at 6am....The emergency room that is.

I was going to relate the long and exhausting week of training to you. I was going to tell you all about the wonderful training nurses and the amazing ways that John and my parents helped me. I wanted to discribe dialysis and the new understanding I have about the process. And that I was more relaxed about the whole transplant thing.

But here I am, about to tell you, my dear friends about how wonderful you are! These past 2 weeks have been full of dinners, debates, tv-watching and lots of love. One dear friend massaged my foot for an hour, then the other friend tried to outdo her. The next day, Pete called to try to get me to say that he had messaged better. I loved the competition.

Even now, my hands are shaking; I'm so excited. But my house is suddenly filled with Kim, Bruce, Amy, Bill & Lorrie. They are cleaning my kitchen and helping me file in a hurry....I am so lucky and blessed.

Second Day of Dialysis

Well - they sure do pump me full of fluid. My stomach is so full, I labor at breathing. John tried to tempt me with a walk (I usually BEG) him, but I'm afraid I cannot do it. They say I will get used to this feeling....

The dialysis nurse said to John today: "Don't let her lay there on the bed and you do everything!" we got a real big laugh out of that!!! John would be a fantastic high school coach.

First Real Day of Dialysis

This morning, I'm anxious to take my first shower in six weeks - I cried a little wimpy whimper when I remembered this morning at 5am! I woke without the flu like symptoms that I have had every morning of the last week. Neither my stomach nor my legs hurt! I'm tired; I'm a little froggy (foggy) still - but I feel something like excitement at the new energy I'm going to have. Yesterday was my first day of dialysis. After many many years of dread and self-imposed ignorance, I have learned about this daily procedure and faced the future. I can do it...I know it is not going to be easy (four times a day for the next six weeks...) but I can do it. (even as I write this, I am so emotional because I really am so tired) They pulled EIGHT pounds of fluid off of me yesterday. My kidneys had reached the very end. My BP was so high for the last week; I was sleeping only one sweaty hour at a time. The GI tract symptoms covered every realm of misery. The itch has left me scarred on the back and stomach. And the leg cramps are exhausting! The leg cramps started at 8pm sharp and continued until my little kiddy bath at 8 am. Talk about sharp. Poor John was often woken with a scream, not kidding, when the REMs were extra deep and the cramp was extra strong. (I began to try very hard not to wake Latte man up. I'm such a drama queen, even when I chanted over and over: do not make a noise for John...I prayed that I wouldn't wake him...I still moaned or cried out when struck during sleep) Anyhow, yesterday, the IV bag was about to burst after draining from my periteneal cavity for 10 minutes. John said that my face went from Pumpkin looking to back to sagging - and beautiful. We all laughed, but the nurse said, yes, your face doesn't look swollen! So I was happy. ....EIGHT POUNDS... The wait for the transplant continues. John and I thought I'd go to Vandy over the Halloween weekend. My nephrologist says that the call will come only after this week of training and I get the supplies delivered: "You will take the whole week off for training, rearrange your entire house for the supplies and then you will get the call from Vandy!" Well, TWENTY-SIX boxes of supplies are going to be delivered on Thursday. Hmmm I've had some very nice calls and emails over the last 48 hours. I am again humbled by the prayers and help from others. One friend wrote this morning at the end of her email: "I"d love to spend time with you if you want some company during any of your trips. Just email or call -- I'm around all week and weekend and the weeks after and on and on too." That last part got me. And so it is with my family of friends. And my parents. The hours and hours of listening, especially from those brave enough to be "trapped" on a walk with me, are the greatest gifts to me. The sheer stamina of my friends throughout this past summer - it is amazing to me. The people that continue to call me and send little notes - it kills me. Thank you. You really make my life. So I'm off to the shower. Pictures posted later!