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.