Surprised to learn so many donors

One thing that has really moved me during this experience is the number of people who have called and visited who have had a family member that has had a transplant. The stories are amazing and impressive.

Some very old friends and acquaintences tell me that their own mother had dialysis for years and they truly know what it is like. Others reveal that they gave a kidney to their brother or mother. Unbelievable. It is very very humbling to know someone like Bruce K or Doug S who both gave their kidneys to family members.

I am without words when someone offers to be tested. And ask Latte man, I'm rarely without words.

One story I heard involved a transplant at Vanderbilt. A woman my age was in tears by the elevators at the Vanderbilt clinic when she ran into an old boyfriend from high school. The boyfriend always had admired her but they had never been serious. The woman told him her story: her mother was very sick from dialysis and her own kidney wasn't a match for her mother's body. On the spot the man offered to be tested and within a week he was the donor. Two years later, they began to date. Soon after, he proposed at a trip to Disney World.

Comments?

Sirens Make Me Think

Yesterday was dark and wet. Cold and icy. I kept hearing sirens on West End and Phil called a few times to tell me about all of the wrecks and a death on I-65. I told Tom H about it all and my sick feeling in my stomach that I was going to get the call for the organs.

He said in his funny pretend voice, "Maybe you should go to the scenes of the accidents and ride with the victim to the emergency room. Just to make it all easier."

It is all awful and strange and now that Christmas is so close I find myself making plans with so many friends and family that I am planning in my head that the surgery won't happen until after the holiday. After everyone opens the neat gifts that I got them! After I've gotten to go to the Thompsons' and the Watkin's - Rice's, etc etc. After MamaLott and PapaLott's house and after the Fennell gathering on Christmas day!

But You-Know-Who has His own plan. I've got to remember that. And keep my kitchen clean.

Holiday parties

Does it count when someone offers you their kidney while tipsy at a Holiday party?

The Movie Sounded Funny This Morning...spoiler alert: bathroom talk

I think I want Amy Sedaris or Drew Barrymore to play me in the film. I just cannot see Drew with diarrhea for 5 days straight. I'm not sure how that is going to play. Fortunately, I can see Ms. Sedaris making the most of the GI situation. Maybe Drew will be able to make it cute when she has to change her pants twice at the gym. Or the reaction of cute men at the gym to the smell could be a chuckle.

In the movie, Phil, I see as played by Will Smith, though Phil is not black. Cordell is black and Cordell must play Cordell (he has some experience and I must insist that he be cast as a stand in. Dallas ticket sales will pay for the movie alone) Lynnette from Despareate Housewives will be Carlyon, of course. Holly Hunter, Johnna. or Karen. Sally Field could be my mother but must be played more angelic and less neutrotic than the mother she currently plays. Latte, the whole man, the Renaissance wonder, the miracle nurse and sometimes a pain in my tush, could only be played by Steve Martin. I know through his autobiography and short stories that he is a true sensitive.

So this morning my sense of humor mislead me to believe that I could write that screenplay about my life. The long hours of dialysis, the nurses calling daily to make me describe my poop: for some reason I could just see Drew Barrymore sitting on a toilet trying to schedule a house showing for the next day. Yes, it was funny then. But 2 hours later, when I had to change clothes due to the severely strong dose of SORBITOL, my humorous feeling eroded some. When the doctor said I had to DOUBLE UP on the Sorbitol for 5 days straight....Well, I guess I am going to have to get some diapers. Fun.

There was one scene that I replay that is very funny to me. My nurses were all gathered in the little room and fussing over me. I'd broken down a little bit and cried to them for the first time. The 8 hours/day needed for the exchange was too much. The diarreah was getting old. The dietician and the social worker both were trying to talk to me to check it off their list. The dietician had to tell me all about pottasium and calcium and make me sign a sheet that she had gone over it with me. Lucky for me, no potassium flash cards this time. Meanwhile, the social worker had a big whig in the insurance department driving in to meet with me next week about Medicare. What was my schedule? she asked. Through my tears they were all trying to comfort me as well - there were 4 of them, and Toni was preparing to draw my blood. Everyone was talking at once, but when Toni leaned down with the needle and stuck my bare arm, everyone in the room leaned back and gasped, like a Disney cartoon. Really it was funny and I started laughing. I've had my blood drawn there at least 10X but I've never seen this kind of reaction.... They are all lovely women. It makes me feel good that they care that much.

Even though I think some of this is funny, I don't think this will play as a movie. Just to let you know, I had too busy a day to have to run to the potty every 10 minutes. I'm trying to finish my second dose of dialysis now, get my bloodsugar right (it is spiking) and get to a funeral visitation for someoen that I admired and was so fond of. I usually worry about crying at a funereal, but today I will be worried about another kind of leaking.

I told Phil that I had on 2 pairs of underwear to try and get me by. He said that my vagina must be in shock since I usually don't wear underwear. Shame on me for ever telling my biznes.

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!

Ballooning in Size: Get this Urea off of me!

Ah Oh

While I was somewhat prepared for the weight gain and swelling, I had no idea that my shoes would quit fitting. My most comfortable ones don't work today.

I did squash myself into some old jeans and sqeezed the pump into my pocket. You should see me walking.

The leg cramps were fascinating and made me so mad last night. My legs twitch twitch until they cramp like lightening. Drink water, they say. i'm drinking, I'm drinking!

First Day of Real 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!

Ballooning in size...get this urea off of me

Ah Oh

The biggest shoes I have don't really fit today. I've been preparing for larger clothes and all, but I had no idea my feet would swell to another size. I squashed myself into some old jeans and squeezed my insulin pump into the pocket. You should see me walking.


A note about John as a nurse: He's a dark horse and winning.

Ballooning in size...get this urea off me

Ah Oh
The biggest shoes I have don't really fit today. I've been thinking about the clothes and all, but I had no idea my feet would swell to another size.

I squashed myself into some old jeans and squeezed my insulin pump into the pocket. You should see me walking.

A note about John as a nurse: He's a dark horse and winning.

Getting Older

I told my friend, let's call him Rick, about my transplant and dialysis stuff. I love this guy; used to have a bible-study with him in my 20s, the kind of Bible study where sometimes the participants were half-drunk and always laughing quite a lot. We were so poor, there were challenges about how low we'd go for money at that time in our lives. So even though we didn't end up talking about the Bible (except for the first meeting), we at least discussed some great moral questions (was using a fake Krystal coupon a sin?)

So "Rick" says to me: "Now Kim, I know that this is nothing compared to what you are going through. Nothing! Getting old sucks. Yesterday I had my very first (and he paused, then lowered his voice) hemorrhoid surgery. I'm sitting here at the bank (and he whispered this with great emphasis) in a diaper!"

I'm sorry, but I just loved that he shared this. I laughed for two days. Especially when I think about what a snappy dresser he is and that bulky diaper.

Implant surgery, Titans, Halloween

I'm off to the Y and the Vandy Lab, my second home, it seems. My face looks very unfamiliar, but an hour on the eliptical or whatever that knee-eater is will help. Too bad I still cannot take a shower or I'd def save time and get ready there.

The Titans game was just like I liked it. Tail-gate at the stadium, game time at home with friends. As a fair=weather fan, I am suddenly delighted with the Titan's record. Shawn, my brother ("The Commissioner" or "The Mayor" or "Rooster") assembled a grill the size of John's Prius. He and Tony got to the parking lot at 1:30 to secure great space. The grill had a muffler man on the front, completely welded by my brother, the muffler man. John pointed out later that it was anatomically correct. Above and to the right is Shawn and Vicki - my mom invited us to their party!

John and I showed up in time for a walk over the bridge at sunset - NASHVILLE IS GORGEOUS. There were blue lights everywhere and the Shelby Street bridge sparkled. We stayed long enough to stop by a few parties, eat some delicious food and brag about going home to watch with hot chocolate. There is nothing like picnic food eaten with gloves and a muffler over your face. But home with mom and dad and Bruce and the Pattersons was even better! Bill introduced us to Snyder's jalapeno pretzel sandwiches and PoP Secret Homestyle. I had a stomach later, but worth it.

Saturday night the the Mertz's had a Halloween party. I was on the couch from about 3pm on (after some work) and around 7pm I got up to wash my face and go to the party. I did NOT feel like going... But once in my closet, I realized that I hadn't worn my mother's dress from the 60s in years..or my feather hat. I jumped into it and I immediately felt good. Funny how that happens. As soon as I got my Bubba Teeth in, I knew that this kidney thing is just in my head - I felt great! John was convinced to dress as well and the whole production took 15 minutes. We had a great time: Elvis was there and the Dairy Queen and Burger King. Pac Man came and for some reason (maybe part of the Pac Man thing) there was a large solemn man at the door checking names off a list. He stayed there all night though there were only about 15 people present. A patio man thing? (David Brooks in the NYT) Guard at the door of fancy party? Leftover "excesses" of the early 200s?

Heard a some terrifying stories at the party. A certain realtor there said that he wasn't sleeping: in July he got in a bidding war on a short sale house. He outbid 5 others and now couldn't sell his other personal house. No money coming in. The bidding war had ended at $900. I had seen this house when it was on the market at $1.2. Ah, but for the grace of God, go I. John and I were so lucky to sell our house last July.

There was a "retired" doctor at the party with a free mammogram box on his head. The idea was too place your chest in the opening at his face. The women didn't seem to laugh unless they had liquor on the breath. In my buck teeth and countriest of accents, I was telling stories about which children were in which prison and that I was 36 with 14 grandchildren and that the 7 year old was home babysitting and that John was my fourth babydaddy, etc.

Mr Mammogram was saying that he was a surgeon and could give me implants and I said if my lawsuit worked out that I might come to him.....He then took off his box and told this awful story: It seems when he was bored, his friend the vet convinced him to give his castrated German Shephard silicone implanted testicles. He said "I knew I would never show him; but he was a show dog, and I wanted him to have every opportunity." He proceeded to set up a surgery center in his garage (gated community) and implanted the extra large balls. Everyone laughed but I was a little nauseated. Then he says that the dog developed a reaction to the silicone and he had to remove the balls. Perfect story for 2008.

Answer to "How Are You today?"

To Mark:

I am doing good. My life is very very full, as my super positive friend says. I always am jealous when she says that, cause mine is full too, and I am so freaking comparative and competitive. (I think this is funny about me and useful, but also limiting!) Well, full is a good way to put it. I have reevaluated real estate and I still love it; I need a nap most every day; I am spending more time than ever with good friends. I especially love helping the nice people with real estate. Help & a positive attitude is what most people need right now and that mostly means pro-bono work. Everything is overpriced; I constantly marvel at Nashvillians who think their house is not affected by the economy. Everyone should lower their prices if they need to sell! I don’t push it…I just try to help. (At the Y: "Hey Kim, my house is ok isn't it, cuz its on Jackson Bvd?" -I've never even been in this nice man's house)

The kidney disease is challenging, but mostly, I feel good. Really.

I have one more week to wait on dialysis – I should’ve started 2 weeks ago, but I have to wait til they have trainers available. They are all booked up. My symptoms are a pain, but I can live. But tell that to my very loving (republican) neighbor who says that we have the best health care in the world. Last night we tried not to talk about it, but he couldn’t help but tell me how other people wait forever in other countries for medical care. And that America has the best care. I also had to wait 2 extra weeks for the surgery to put in the catheter! And now it is six weeks since the catheter implant – and I’m getting sicker in the meantime. My kidney function is at 6% today. And….the transplant center at Vandy got EIGHTY EIGHT applications for dual organ transplant (both kidney and pancreas) just before me, so it took from March until July just to get onto the list. The average wait for just a kidney is 4 years. ( I am trying the riskier dual organ transplant and luckily and high on the list for my blood type. It could be any day. For some heart-warming reason, the south has more organ donors than the north) So tell me about waiting.

But as for the American Health Care system: I don’t know what to think. I don’t want to study it because it is so much info….
Don’t even ask me about Stem Cell research.

My friends working in other countries in health care swear that other countries’ research is starting to outdo America. I need some stats on that.

Ok, enough of my ranting. GoBama

I’m trying to write a blog, but so far have kept it private. It is mostly just thinking & rambling and some of the older posts are more fearful and bitter than I now feel. In fact, I do love life more than ever…I am having a big time between napping, scratching, leg cramping and pooting. (nice)

Nashville is awesome and I only wish I could spend more time with all of the different people I love. I’d love for you and Tom to come over for election night. I have one or two friends that will be here and you’d like each other. Wonder if we could get Holly/Jan over….Anyway, Nashville has so much going on –Recently, I got to go to Robin Williams, a Predator’s game, David Sedaris, a lecture at Vandy and Halloween parties. I get tired, but there is time for a nap beforehand, and I love it.

Today I saw the dialysis doc and the OB/GYN. My blood pressure is very very high and everyone is concerned....but next week's dialysis should help. Latte man stopped by the center and asked that they start earlier. I think my stomach and groaning might've kept him up last night, but he'd never complain.

Tomorrow i go for more blood work at Vandy for the transplant center. I'd rather be selling....get it? I'd rather be sailing, selling? ok, never mind

Hope you are still singing and meditating and eating at Margo’s every Friday. If I get called to the hospital for transplant, I’ll put you on the email list. Tom might even come see me after a few days (since he is there at Vandy…ha!)

Forrest Gump and Obama

2 weeks ago:

John was on the front row of the debate. Therefore he was on "the TV" about 1000 times. We got calls from Dallas (in the morning paper), NY - Terri Collins told us about the NYTimes, San Fran - he was apparently on "The View" and 100s of calls from Nashville.

Dearest pals came over and Kat stood next to the jumbo screen jumping up and down everytime she saw Latte man. She did finally sit down after an hour. Pete and Karen were just hilarious. We had so much fun! But John was there, trying to get a pic with McCain - but succeeding with Obama. On C-Span we could see him actually following Obama around and wrapping his arms around his shoulder for the picture. Of course, the secret service had strictly told them all not to step onto the stage and definitely not to ask for a picture. John Lott was the first and the rest followed.

He is just like Forrest Gump. Often, I am enjoying myself at the Ryman and John disappears. A few minutes later, you can count on a phone call from backstage. I am in the cheap seats. Same with VIP sections and good parking: Latte man always gets the best.

Waiting for a Transplant; Starting Dialysis

I am the Bionic Woman.

But I itch. I itch especially on my back, where I cannot reach. I itch around my neck and my chest and the real claw marks are found around my catheter tape. The tape to secure the one foot catheter to my belly is getting old. I want to take it off, like you do a new bra at night or too-tight shoes. The shoes may look good, but you just want to take them off. The truth about how permanent the catheter is is setting in.....But it's not permanent if I get the transplant. Ah the wait. And the composure I need. One day at a time...right?

I've tried not to talk about the itch. Or the GI problems (poor John). Or the other symptoms. I've tried to meditate (it works), busy myself with anything else(it works) But the itch comes back. Now I'm trying to talk about it to beat it. The medications are helping with the GI problems, but the kidney doctor proffered nothing for the itch or the leg cramps. In fact, he says he has no idea why I have leg cramps - maybe dehydration. (On every website about kidney failure, leg cramps are listed as a sympton. The dialysis center staff said to eat salt.)

So I am Bionic - I am strong! I just had the most delightful walk with Laura (great therapy) and I will do the 5.8 with Amy tomorrow. But I am Bionic with an insulin IV coming out of one side of my stomach, and a dialysis catheter coming out of the other. ( I guess I should really be self-involved and take a picture....oh yuck.) The catheter goes all the way through my peritenal cavity and apparently is touching my....get ready for this one...rectum. It feels very very unusual and not in a good way.

My other symptoms include some balance issues (I can handle that so far!) and wanting to nap. I've missed a few dinner parties and great events due to the napping. I wanted to catalog my aches and pains here...for good reason. Though I do complain to John and a few friends, I know it is tiresome and unproductive. So I am pretending like I'm not sick. I want to look back at this, after this risky surgery, and know that I'm better off after the transplant.

Sometimes I think: Why am I risking this surgery - the kidney and the pancreas? These symptoms are not so bad. I can live with gas pain, gas smell, itching, other not so nice GI issues.... But as dialysis gets closer (one week to go) I know that my life is going to change even more. The bandage changes everyday and the saline soaking are nothing probably compared to Peritenal Dialysis four times a day (for the first six weeks - then 9 hours a night).

update on dialysis

Here is the update I wrote to AG, Peter, India...last week

I’ve had the dialysis surgery 2 weeks ago and have to heal another 2 weeks before I can start. It looked like something I could do while sleeping (9hours every night) but I just found out that I will have to do it during the day for the first 6 weeks. Those will be tough weeks because they will take my entire day almost! (I’ll bet I don’t have to cook this thanksgiving! )

I’ve always loved playing dress up but the mask and gloves required are getting on my nerves.
I am also number 1 on the transplant list. Luckily, I feel great. They cannot believe it, my creatine is so high. They keep asking me if I am dizzy or nauseated….etc, etc. I still want to eat, etc. just a few symptoms that I can live with. (really fun things like itching and leg cramps) I really do think my measly little walk everyday is what helps. My good friends say that I don’t know how tired I am (I must look awful, the way they talk) I do take a nap everyday, and it is usually a necessity.

It is weird to go through the day with customers, etc and wonder when the call is going to come. At any moment, I may need to step out of my life for a month or six. Wild, but I think I’m ready.

food critic

To my friend the food critic:

OMG
Did we eat a Mexican-Japanese meal or what? Sopapillas, "fish" tacos, tamales AND sushi? "Deconstructed" sushi, no less. Thanks so much from the bottom of my still full GI tract.

You know that eating with a reknown food critic was one of my life goals.

Don’t mean to be too gushy – but what a great Nashville night in "Little Dubai" and you are the funniest. My senses were dulled in the end with the deadly combination of time schedule and fried dough, yet I still had to laugh with you. I loved the freaking weather and time of day too….I”m too tired to go at 8:30 when John is ready! ha The sun started setting and the father daughter team started singing...and it was soooo pretty. It is true; the crappiest band in all of Nashville, TN is equal to the Best Barband in Dallas.

We made a commitment to try and write in our "blog journals."

So go write some private journal that you can publish later on. You should be a writer for a larger audience. It's not fair to deprive the people of Missouri of your humor and so on.

Thanks for thinking of me as the faux food reviewer for one night. The food was awesome. And you can use that in your column. ha

Coco

Humbling Friendships

What an amazing group of people in my life.

Snickers, the beloved dog next door, is so readily shared with me by my favorite family the Trotmans. This is seriously the best way to own a dog...let it love next door.

Other friends today:

Lorrie took me walking today; afterwards we saw the bench she had made and placed for her father.

He passed away almost 1 year ago. The inscription says:

"He has achieved success who has lived well, laughed often and loved much; who has gained the respect of intelligent men and the love of little children; who has filled his niche and accomplished his task; who has left the world better than he found it, whether by an improved poppy, a perfect poem, or a rescued soul; who has never lacked appreciation of earth’s beauty or failed to express it; who has always looked for the best in others and given them the best he had; whose life was an inspiration; whose memory a benediction."
(Bessie Smith apparently wrote it; but it is often attributed to Emerson because it was published alongside his own essay in a newpaper.)

The bench is raw cut limestone; its dimensions are heavy and organic, chunky modern & strong. On the front in the most simple font that explains how the bench is given to the neighborhood beloved by their father from his children. What a pretty little spot with azaleas and a dogwood.

Lorrie is like him, I'm sure, though I didn't know him. If I could ever have touched someone the way her father touched so many, that is what I hope to accomplish. It is enough to hear Lorrie talk about him and it is an honor to hear her mention him. I love that Lorrie could show it to me. I'm humbled by her offer to help with my dailysis in the future.

Pete spent an hour today fixing my television; Phil came to entertain us at lunch and offered to help me with all the things I keep whining about! He also listened endlessly and with actual interest to my silly ramblings. Doug came to check on me. Mom and Dad called to check in - they my most solid support in life.

Susan & Drew spent hours feeding and entertaining me...and again, listening. What a wonder it is that I have such friends. I have to say it again: it is so humbling.

Pete talked to me about EMDR therapy and spoke in brilliant lay terms for me. He's amazing at describing the usefulness, the physical act of the treatment, the brain function, the way you use dual attraction to focus and many theories about why it worked. Just the explanation and examples of "dual attention" - by using eye movement or tapping - anything to left and right and back again, while focusing on the cause of the anxiety was so simple and brilliant. I encouraged him to write for the average interested person, like Oliver Sachs, but he laughed. Anyhow, it's not the same, I'm sure, but the dual attention reminds me of the intense focus of meditation and prayer in the woods....You are in the quietest setting, relaxed and able to think about being present and acceptance.

ahhh i am blessed

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.

Real Estate in this market....

Saturday night a few weeks ago:

Kendall told me that he was quitting real estate. After a 20 year successful career, he's had enough. In front of 10 gay men and Leslie, relaxed by the most beautiful $2.8 m spec house in the Nashville hills, he regaled a summary list of being exploited as a realtor...

He didn't want to be treated like that anymore! With minimal words (I admire that) he summed it all up: it is not worth it...."If you care about your clients at all, then your life is miserable if you also need to support yourself....fine if you have someone else supporting you, but life for a successful realtor is horrible."

He meant that it is more rigorous, less rewarding, and looked down upon more than any other profession. Listen, I know: I come from a long line of car dealers....Realtors are treated like urchin children by many...in some crazy self-flagaration way I must like it.

I love my friend Felipe's comment: "quit complaining, Coco. You've made more money at this than anything else you could do!" He's right; I was "downsized" from so many careers! I mean, we went to real estate school for 3 weeks. (there were however, over 400 hours of continuing ed.)

Mr Wonderful, in a rare frustrated moment said, "you are expected to be an expert on everything." Here are some of my areas of "expertise" in real estate:

• All aspects of construction, framing, roofing, drainage, codes administration...* i mean I have had to go referee w/an inspector vs an engineer over Joist Spans. and then I have to explain the calculus to the client...I barely passed calculus
• 
  Liability and lawsuits
  
• Marketing & how to get buyers to buy
  
• How to bribe other realtors into seeing your listing
  
• FSBOs - also called "realtor-haters" - how to work successfully w/them
  
• Human nature and subtle implications
  
• Writing protective contracts
  
• There is a whole category for dealing with big egos: country music artists, lawyers & doctors, not nec in that order
  
• managment of staff
  
• latest decorating trends
  
• database managment
  
• contracting repairs in a very very short time period
  
• working on worse deadlines than a daily newspaper (I've been there)
  emotional counseling, including, but not limited to: fighting spouses, crying first time buyers,
• anger over equity loss, and manic spending (over spending)
  
• babysitting
  
• entertaining including but not limited to knowing who is playing at the Bluebird and what they are famous for
  
• foreclosures: both taking advantage of a good deal for my buyer, and helping a seller with future credit and stop loss
  
• rental markets
  

Amy Says to me about a friend; this friend Annie had a liver transplant and quit being a lawyer: "Annie B. is just a cool chick. I always meant to send her a note when all that happened but was too caught up in myself... It was awesome to hear someone much smarter and better in Court to say, 'I just couldn’t do it anymore'. Egotistically, it’s always hard for me to admit that. I told her I came to terms with it when cousin Cathy said,

'Who do you think is going to change your diapers, the law firm, or Catherine?'"

Apparently, the woman is thriving as a teacher at the boy's school here and is very healthy and happy....

The reason I mention all of this is because I got the news that I definitely have to go on Dialysis Soon. Looking at all of the options. I feel pressure to decide which way I want to go before I meet with the surgeon. Very upset over the weekend and felt bad. Didn't know which caused which. Was unable to complete anything on Sunday. Computer crashed. My computer guy says i may have lost everything (contracts, photos and most importantly database of 20 years...) i have some backups somewhere, but the very expensive backups system does not seem to be working yet....they are still checking it out...yet really noone is here.
Have lots of work to do for the clients that are grateful. Unfortunately have decided to do more free work for the clinets that not so grateful. I really think that I work just as hard for either type of client.

The "Horse People" decided to go FSBO. This is after the 3 hour consulting I did with them to get the house ready and to price the listing. Another reminder from God to focus on work-life balance.

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

Rilke poem

LET EVERYTHING HAPPEN
by Rainer Maria Rilke (1875-1926)

God speaks to each of us as he makes us,then walks with us silently out of the night.

These are the words we dimly hear:

You, sent out beyond your recall,go to the limits of your longing.Embody me.

Flare up like flameand make big shadows I can move in.

Let everything happen to you: beauty and terror.

Just keep going. No feeling is final.Don't let yourself lose me.

Nearby is the country they call life.You will know it by its seriousness.Give me your hand.

(from Rilke's Book of Hours: Love Poems to God,translated by Anita Barrows and Joanna Macy)

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!