Recap

Helllooooo my friends. It is Saturday afternoon, Valentine's Day and I'm sitting in the dialysis clinic on White Bridge Road. Everyone is very receptive to my chipper mood; the nurse Jason got my wireless hooked up and Dawn hooked me up to the dialysis machine. All in about 15 minutes. Apparently I am on my own for the next 3 and a quarter hours. I have phone, books, computer, NYT and pillow/blanket from home. I think that I will describe the scene some other time. I think it best to focus only on my nurses and not the atmosphere here. There are some very sick people within a few feet of me.




The photos are of a) Bruce makes a heart shape with red vest and body for Valentine's day, b) a friend's Valentine's Day shirt at the "Peep Show" this morning (breakfast at LePeep), c) some very dear visitors post-sushi at the hospital. Had a very nice social call or two lately. You know how I love the visitors.

Got out of the Centennial Hospital Lux Hotel on Thursday afternoon. I've had a bit of amnesia, a little pain and mostly feeling wobbly when I walk. But I'm good. They took 20 pounds off of me in the 2 days that I was there.

Here is a recap of my situation:

*March 2008 - warned that my kidneys were about to go. Frantically try to keep them going!
*June 2008 - got accepted into Dual Transplant program at Vandy after many educational visits and competing programs. This means I am in line for a Pancreas AND Kidney Transplant. Personal nephrologists does not agree with my decision. He wants me to get living donor NOW, not the Dual surgery. Very hard decision. Vandy has me do over 30 tests to qualify, including visit to my favorite dentist, TB tests, everything!
*August 2008 - Begin to feel tired, gaining water weight
*Late September 2008 (?), had surgery to place PD catherter into my paretineal cavity.
Healing time & waiting for the clinic to have time to train me. No shower for 6 weeks.
*Nov 3 started PD training for that week.
*Nov 7 First day to have dialysis on my own at home. Vandy calls with potential donor for pancreas & kidney. Up all night getting ready for big transplant
*Nov 8 transplant falls through. (good dry run)
*Nov 8 - Jan 15, 2009- Peritoneal Dialysis goes very slow. Spending 5-8 hrs per day on the "exchanges" at home. Sell a few homes! Feeling Better! Very good actually; go to gym or walk everyday! Real estate "consulting" is mostly pro-bono, but I'm happy to do it!
*Jan 26 - Unorganized dialysis nurse finally says, "something is wrong" ordered xrays & ultimately exploratory surgery
*Jan 29- Surgeon finds falopian tube sucked up against catheter. Visit with all friends that work at Centennial, including 2 surgeons, 1 nurse, & 1 anesthesiologist.
*Jan 30 - PD goes oh so fast. We cry with joy! I see the light
*Jan 31 - Ah Oh. The exchanges are fast, but then they stop. Not enough fluid comes out. I begin to grow, gaining pounds everyday.
*Feb 2 - in 2 days I gain 8 or 9 lbs. Another surgery scheduled, then canceled. Never talk to surgeon because he is calling home line instead of cell. I go a few days w/o checking home line.
*Feb 9- lots of visits to doctors. finally at a face to face with surgeon (i've now gained 15 lbs) he thinks that the peritoneal cavity is leaking into surrounding tissue. Most of my weight gain is squishy fluid in groin, legs & chest. On alert to go to emergency room. The only thing to do is another surgery with emergency catheter installed in jugular to do hemo dialysis.
*Feb 11 - weigh 128 lbs on way to hospital at 5am. Hard to sit, walk, breath, ect. very uncomfortable. Shoes do not fit, nor does clothing. Am admitted for 2 days. After the surgery, I have 2 hemo dialysis rounds, then back home the next day. Scales say 108 lbs - they took 20 lbs off of me!
*Feb 14 - Happy Valentines day! Am currently having hemo dialysis "in center"....3 hours to go!

So the last few days have been full of emotions: john has kept me laughing, we were laughing the whole time the morning of the surgery. We had the whole pre-op room coming down to see what was up because everyone was making so much noise. One of the nurses even said that we were the fun room. After surgery friends brought sushi for the whole room and you know I love my friends so much because apparently i fell asleep and snored in front of all of them. John & mother fought over who was going to stay with me, John bragging about his air mattress. John stayed, flirted with the nurses, then told them not to wake us up all night! Unfortunately the alarms in other rooms kept him up. I was too drugged to be awake and I thought the bed was very nice.

I feel good and a few friends were concerned when I told them that I did real estate most of Friday - putting up signs, showing a few houses, dragging branches to the street at my rental property. I had a very nice walk with Kim & Lorrie. Dr Wolf has made a few house calls over the last few days. Luckily I am playing scrabble - 10 or 11 games on Facebook right now, and I'm still managing some leads over Bruce & John. My mental acuity continues to challenge them! ha Love all the notes and the visits and feel honestly quite lucky. The dialysis centers are a reminder of how good I have it. I think I will spare you the descriptions of the other patients and the scene here.

February 11, 2009

Substitute blogger for the day: Karen Silien

Update on Kim:  Kim successfully had surgery this morning at Centennial Hospital to move the site of her port for dialysis, due to all the complications she was experiencing.  I just spoke with Kim's Mom, Gayle, and the news is positive and hopeful.  The first dialysis in the new site 0f her jugular vein, will take place in the next hour.  And of course, in only Coco style, I had a text from Kim after the surgery that she was feeling well,  so well in fact that visitors and well wishers should not be discouraged from checking in.  She did ask that flowers not be sent as she hopes to be back home by Thursday morning.   

Our thoughts and love are with you Kim.

Update: surgery tomorrow. Contraband suggestions needed

Update: surgery tomorrow. Overnight at Centennial hospital. Call me call my mom call John! or dad. This surgery should fix everything. Apparently the dialysate has been seeping into surrounding tissue. My fear exactly. They will put a catheter in my neck and do hemo dialysis for 1 week to get the 12 lbs of fluid off. Not happy about it. But what can I do? Making jokes has been helpful.

I am trying to figure out how to get a contraband house flyer upstairs to the anesthesia doctor. I have the perfect house for him. When I get there tomorrow morning, they strip me of phone and books and laptop and jewelry and reading glasses. Then I get the pretty hospital gown on. Any suggestions would be helpful about how to sneak some photos up to the doc. (i also have a picture of a friend I want to fix the doctor up with!) Wonder if I tattoo the info on my stomach...oh never mind.

thanks!

Tuesday update

I am reading Dr Peerman's book "Blessed Relief: What Christians Can Learn From Buddhists About Suffering." I dare not say I am suffering at this time, but so far every bit of the book speaks to me in a practical way about living. I am thinking about the way Dr Peerman speaks about always wanting the other: even when I am in bliss, hiking at Radnor, for instance, I might think, this would be perfect if only so and so friend was here to see the eagle. Or anytime that I long for the other: my parents to be here, a certain friend to join in the current joke or laughter. If I am thinking about anything else in the future, or how a good situation could be better, I am compromising the PRESENT situation! So I am learning to enjoy the moment for what it is. And be in that thing. Longing not to be in the waiting room at the doctor's office does not help the time pass. So I am working on that. I see it as a lifelong goal.

It only feels daunting this morning as I think about missing what has become our annual ski trip. Ha! I'm not one for lingering in longing thoughts, but I couldn't help myself this morning when my exchange went bad. I'm swollen beyond comfort; many things hurt with the extra fluid. For awhile I could only think of Luke and Brad and Cordell and Floyd eating breakfast in their pajamas and Cordell finishing up the cooking and griping about Latte "not eating breakfast" and eating up all of the eggs even as he makes the claim. John wishes he was gambling with Floyd and I am missing my annual photo-in-a-bush with Gene S and all of the humor from Gene D and some instructions, jokes, stories & showmanship from Cordell. I miss all of the little comforts that Floyd provides, patting on me, etc, and I'm wondering if he can even ski with his foot like that --but I think Floyd goes for the love of his friends, not necessarily the skiing. So this is a maudlin sentimental indulgence to think about them and pander to them because I think Gene reads this sometimes: Hi there guys. What project is Cordell working on now?
Well, I think I need to get back to the present. My 1099 to my former worker is overdue! And I've got a couple of houses to sell! The best listings in Nashville; I'm lucky in that.
And I've got to give this surgeon a pep talk! He can fix me...he can fix me.

Monday morning notes...

Hi Karyn
Thanks for the note. I feel funny writing in a blog when you don't really know who is reading it! I meant it to be a journal of this time in life, but not sure what I'd call it. I'm so glad that you liked the part about John's painting...I didn't know howto convey what felt like hysteria. John continues to be amazing and happy and a good sport. He is hanging in for the long haul I hope. The fun is not so much today as I got up at 5 to try an exchange and very little is coming out. They were concerned that I had gained 10lbs of fluid last weekend in 2 days and I was trying to take that off. I woke up Saturday with 4 more pounds....ugh. I kinda hurt all over esp my left leg which is huge.

this morning I sat on the toilet for an hour playing Facebook scrabble trying to help the situation. The nurse says that it may be hospitalization today and I don't want to go. they would do emergency catheter (I think it is in the neck) and emergency hemo dialysis. People get it all the time, but I"m afraid of infection and I cannot get an infection and maintain status on the transplant list. It is 7:30 and I'm waiting for the nurse to call back as I refill my Peritoneal cavity with even more fluid (the fluid should pull more fluid off, but hasn't been working!)

Karyn-
what is going on with real estate in Knoxville. Are there closings? How is your business and how does it compare to last year?

I would really love an ADPi get together this summer. I'm happy to host any part of it if my transplant thing goes...
Lovin you Karyn. enjoy this great weather in February! xoxoxo Kim

additional note on blog:
This weekend was so nice with a small party for Kat's birthday - Her request to play games at our house resulted in Balderdash laughter and abuse. So nice to have it at my house so that I could do an exchange when I felt like it. Phil was a champ with the hook up of Italian food from Pranza, a little cafe open only for lunch in Berry Hill. And Karen made a very special and much loved Chocolate birthday cake.

Last night we were invited to Brenda Lee's daughter's house for the grammys. She was given the Lifetime Achievement Award on the day before and her daughter had a small party to watch the ceremony. I bragged to a few friends about my proximity to celebrity so I had to go. The nurse wanted to call the doctor about my fluid gain, but I got her to put it off (so i could go to the party). I found the celebrity kids just like all the others: very gracious & generous (Julie forced me to take her lambskin slippers though they kept falling off of me and I couldn't even walk in them). I imagined that the two sisters were a little stunned by the harshness of life when I heard about their circumstances, but then again, aren't we all? Nice family, so nice that the star herself didn't show, which was the smart idea, watching the Grammys on her own couch with her own Snuggle blanket(look it up). She got a lame mention on the show from Nashvillians Leanne Rimes & Sheryl Crow. I of course volunteered to have a kidney foundation fundraiser later in the month if Leanne & Sheryl will come properly present Ms Brenda Lee with the award.

So now it is Monday morning. OK, I canceled the dinner party with Linus, something better happen today with this fluid....I had some very propitious real estate showings yesterday. Cross your fingers.

Saturday Morning

Well, the week wound on and I found myself in the neurologist's office for 1 hour with John at my side on Thursday. I've never spent this much time with this Doctor. It was a come-to-Jesus affair with me bawling and saying I didn't sign on for 6 months of diareah when i went with this type of dialysis (CAPD)and an outpouring of all other symptoms including complaints about unorganized dialysis nurse. I didn't tell him that I was fully booked for a time-share sales meeting at the Vandy Dialysis center. It felt like sorority rush the way they were courting me on the phone. Looking forward to the all the perks on the tour Monday. (coffee?!)

Anyhoo, doc looked me squarely in the eye and said that all dialysis sux and that so does diabetes and kidney disease by the way. And post-transplant will, too. This is probably just what i needed to hear but the tears that gushed out and my fighting to control them racked my whole body so the meeting wasn't as efficient as it could've been. but john discussed the future and the option of going on with the vascular surgery for the port in the arm so i will have options. I remember spasming in my gut through tears and saying, "it is good to have options!" with a big fake smile. Dr. said to John, "Are you keeping her from the edge?" and John said, "oh, I've pulled her back from the edge a few times but you are here to do it now! " or some sort of joking thing. Really, it was good, and the doc wants me to get this 10 lbs of fluid off, God, do I want that and he gave me some tips. Basically, i can gain it in 2 days of bad dialysis, but it will take about 8 days to come off. Meanwhile, it is hard to walk.

We went to the elevator and I couldn't stop crying. As crazy as it sounds, the doctor had shot down my goals and made me face mortality once again when I was so good at pretending. I wanted to get onto the nighttime machine so badly and it looked very grim. I wanted to be able to travel again to work full time to sit to hike as far as usual. It wasn't like I hadn't realized it all before, but it somehow all came together with this failing PD and bowel movements and threat of constant hospitalization or infection which could thwart a transplant.

I was shaking and crying in the elevator and John was doing his best to soothe. We stepped out into the sunshine and it was very quiet in the parking lot and suddenly springlike. My head was spinning with the doctor's words and the long meeting. John looked over to me and said, "I painted an orange today." and again I was wracked with laughter through tears but bitter hard laughing. He couldn't stop me. An Orange! He painted a beautiful orange. It was ridiculously wonderful that he painted what I was eating on that morning. Emily had sent me oranges in the mail. My friends' gifts to help me. And my kidneys quit working and my huge blood vessels that I was so proud of the surgeon loved had suddenly disappeared. and my nails were splitting and my hair falling out and my skin is gone and there is a body part that is 10x it's normal size, but the world is still very good because John Painted an Orange.

I guess it sounds so silly and very Guidepost, but sure enough, the orange is in my den and I love it. And it is 69 degrees outside and it is Feb 7, 2009.

Game night tonight which might mean another foot rub and lots of love from friends.

bad night last night....wednesday post

To India & Peter, now in Sydney! The surgerywas called off today. but there is still trouble with the drain line. i do understand some things better now about my body and about how bad my nurse is. about her: it has all been revealed: she is terrible.

anyhooooo, last night was the dark night of the soul if you know what i mean. i went to bed giggling about john and something but i lay there and my heart raced and my fluid was soooo uncomfortable - especially my 8 pound labias (vagina has swollen to pumpkin size) I had had a long talk with Rebecca Bell who has stepped in wih interest as a long time nurse to help me figure this out. and she was called in a panic when I grew between my legs on Saturday. She gave me some options that I hadn't thought of and introduced the idea of switching to hemo dialysis (the blood one, with a port in my arm)
I couldn't stop crying thinking about how i was robbed and never told about the downside of PD. That silly nurse candy said with PD you only have weight gain. I thought I was doing something so good to overcome vanity - to have conquered vanity to go on and choose this kind of dialysis. anyhow, I never heard about the constant diareah or the 35% dropout rate in PD or especially the slow drains and the 8 hours a day! I t has been 13+ weeks and still not on the nighttime process.
anyhow, it all sounds managable this morning but i couldn't stop crying. I think i recognised that it was partially the urea in my blood that was making me not sleep (i slept like 2 hours the night before) and think too much. I called john downstairs by phone and asked him to come talk to me. He came onto bed and settled in with his back close to me. this made me ball harder. he was saying all of the john thngs like making jokes which made me gag on tears and laugh then start crying again. I was heaving...and I started this, i need you to pat on me, i need you to say something kind, i need you to not joke right now. we are both so good at joking I'm scared here. I'm ashamed to say this, but I said: you need to pretend you are someone else like BILL CAMP and be nice to me. oh, it does make me cringe this morning.

John was just gorgeous and finally got me calm. but then i was awash with all the guilt of how much I've put on him in the last year. and then i couldn't stop again. i kept saying, I've been so good. I haven't been crying much. I never do this. I've been sick all my life....boooooooo hooooo. and then, unbelievably, i could see how ridiculous it all sounded and started laughing. I told him that I was sorry I was so positive to everyone else and that I had to tell someone every ache and pain. he heard it all. so i tried to be quiet for his sake and he finally went to sleep. At 3 i decided to quit trying. He is amazing.

my thoughts went to my closest frineds and my endless outpouring of complaints to them. I am constantly just giving out my symptoms, my feelingsmy ups and downs. the crazy thing is, they hear all of the manic happiness too. My latest thing is a complete brag list that I posted on my website and on Facebook yesterday. total exploration & expoitation of who and i am, and trying to reassure myself! I got what I wanted, some funny notes, ie, attention. I like it way too much, the attention.

so last night things spiraled on and on for what seemed like hours but I could see it would get me nowhere. I wrote an essay in my head about "Living with an Unexamined Life Person" in praise of John Lott and his ways. I wrote a letter to you. I wrote a letter to phil and bruce and kim and Tom Wofford thanking them for loving me even though I cannot ShUT UP right now. And Kat for everything lately. And Amy. I couldn't help but think about legions and legions of prayers sent my way. God is up there thinking, she has fooled EVERONE in the south. India, there are people at churches that are praying for me. There are reports of churches that I've never heard of that have me on a prayer list. I have over 300 prayer letters ina bowl here at the house.

and the crazy thing is I know that it is working.

I love y'all and thanks for listening!


PS I just reread this and it sounds so dramatic. i was mad upset last night but the sun is out and it is 15 degrees outside. I find it very nice. I'm going to be good and it really is going to be a good day. I barely have any symptoms. I must be much stronger for when the real pain comes! ha LOVE YOU