Surgeon says FAT!

The question was:

WHAT IS BLOCKING THE CATHETER SO THAT THE FLOW IS RESTRICTED?

I am having another simple procedure on Thursday at Centennial Hospital (outpatient)…They are doing an exploratory lap to see what is wrong with the catheter. After over 12 weeks of trying and trying to get the dialysis “flow” to go better!(which includes standing on my head, hand over fist of daily laxatives, impulsive runs to the potty at all hours, and 8 hours/day of dialysis.) I am really excited that he has done this before. He predicts that some fat has overlapped the openings of the catheter and are sticking to it. When I asked him if I was having mini liposuction, he didn’’t really laugh but I almost got a smile out of him. My weight has dropped some due to the aforementioned laxatives, despite gorging of food! So he said No, not really a liposuction, but close.

So I will miss the book club! So sad!

But I will back in full force Friday and Saturday to show property and order contractors & hope for a transplant!!!!!! With your help, I am so happy these days! Please call John if you get a chance and give him a good joke or kudos. He has been a saint and a tireless helper & best friend.

Call me/praise Him!

Update...nighttime dialysis eludes me

HI Laura! Well, welcome to Nashville. I'm glad we found you a house.

I'm afraid I'm not a very good friend lately. Dialysis is like having a very needy baby. I am up all hours, sometimes rocking my body until the drain works better. i have been at the clinic so many days, then still doing dialysis for 4-8 hrs per day. I feel pretty darned good, my biggest problem is sitting still and canceling plans. Luckily, i have an extraordinary group of friends & family that put up with me and work around my horrible schedule.


and I still need to work and still love it, even though I am working mostly with hurt sellers. I just try to help.


I would love a visit anytime, esp in the evening because you can usually count on my having to do exchanges then. However, John and I go out to eat tons, mostly in our sweats after the gym....so there aren't too many places to go like that! ha We would love for you to join us for a big steaming bowl of Mexican pollo soupa at our little place. My goal is to see the last of the good movies in the next few weeks, so i will try and call you before we head out. The problem is, we never plan ahead, which is a pain for friends.

I committed to walk in the half marathon with Kim, who understands my fear and more importantly, my schedule.

This past week was incredibly long and Kat and Kim said the same thing. It must've been the inauguration and the absorption of so much energy and excitement. I was also very entertained by the entire event. However, it was a very disappointing week as the dialysis night time cycler failed to work for me. I cannot even go there now, because I tried it again last night and it alarmed every 5-15 minutes. I abandoned it around 10 and was up til late finishing a manual exchange. Latte further encourages me, even as he is bleary eyed and achy from lack of sleep.

I may be having procedure on Wed to explore my gut area - they need to see what is wrong and why this is so slow. Simple lap but it still will "slow" me down. it has been over 13 weeks of this!
i see the surgeon tomorrow & he will schedule. I also have a rescheduled nephrology appointment because for the 2nd time, the doc canceled our meeting (and they didn't call me! I'm afraid i have built a case against him and his nurse!) I also have some great new listings and some dear families I am helping. Most importantly, my hair needs color and my nails (as usual) look ragged. Since that is not important it gets pushed on. Oh, yes, my tags have expired now for 2 months. I've had offers of help; just trying to figure it all out. Sooo. all that is to say, this week seems kinda full!

Update on Monday...Showing Houses & Clinic Visits

To many dearest friends:

I got a nice email from you about 2 weeks ago. I am doing well. I pretend like I am not doing dialysis 4 to 8 hours a day (Unbelievable to me!) but I am. I switch to nighttime soon so that my days will be free again. I have to go to the clinic right now once or twice a week for a blood draw, but soon that will be less as well. So I’ve gotten behind. I know you understand. I have been so incredibly blessed in ways I’ve never expected, and in ways that I’m sure I don’t understand.

This slow time has been good for me to really look at my life and my work. I’ve remembered that I love my life and the work. Nice to step back and take a break, so this economy has really been good for me in many ways. I still work on the fear of poverty and lots of other things like patience. I try to work on not running John off, because as the challenges get greater, He has more and more to be frustrated about. His remarkable attitude helps me. My parents are amazing and it is sometimes hard to talk to them as much as they’d like because, well, you know, they just love me so much.

I am constantly working on the balance between being absolutely so social, which is my natural state, and taking it easy and slow to do things like sort my laxatives, stool softeners and monitor my insulin pump. FUN CHOICES! Fortunately I have one or two friends that hear from me 10 times a day to get updates on the extremes: how hard I laughed at somebody’s joke last night and how long I stayed in the bathroom from 5am. (read: diaherreah or constipation! Fun) Another blessing: I am not in pain, well, almost never. I mostly feel swell.

....The next two weeks I will be dealing with the nighttime exchange and trying to pass the test to do that. (I failed it last week!) I have new listings that I am excited about and some really great clients. I actually think that it will be fun!

Night time dialysis soon...countdown

This Thursday and Friday I am to complete all day classes on night-time dialysis. This will allow my days to be free from exchanges.

I cannot believe that this is finally happening. For 10 weeks I have been doing 4 exchanges a day, sometimes to the tune of 8 hours per day. But lately, the time has come down and my attitude is better. Now I don't get angry when the fluid doesn't flow quickly, I just get more laxatives. And I cancel appointments. (Oh how I missed so many parties this past holiday). I still get very disappointed but I am trying to match Latte's adaptable nature and good will.

I've tried not to allow myself any excitement about this new night-time machine, because I know we are going to be up all night messing with the alarms, etc (apparently the machine alarms when there is a slow flow) But I know it is for a short time! Soon we will be sleeping through it all, just like i sleep through the insulin pump alarms now! ha Sleep is totally overrated. You can get by with less. A recent NYTimes article says that your mental attitude toward little sleep affects how you feel the next day. I have adopted new attitudes toward not sleeping. (ask me in a month how i feel)

I've really enjoyed the company of my friends the last few days. I've many impressions and a little delight at hearing stories. Dinner last night and lunch today was the greatest therapy in the world. It takes some extra planning to get it in right now, but it just seems like so much more of a reward than real therapy. (that probably sounds like sacrilege!)

In the same gatherings we've talked about the movie "Doubt" and is gossip a mortal sin or venial sin? Then we proceed to tell the story about the fantastic hilarious Nashville woman that, returning home from Las Vegas with her husband, she thinks she's unexpectedly pregnant. They get an ultra-sound and I'm sure she was completely stressed out. When the tech says, "There is a baby in there!" The mother said, "Are you sure it's not a bottle of vodka?" I do love that woman!

Then I heard about the covert meetings my artist friend is having with a Belle Meade woman. He's building a table for her. She meets to give him money in the Sperry's parking lot. She doesn't want her husband to know about the table and the money she's spending. "Well I told her that it was going behind her sofa in the den, he's bound to SEE it."

very few things delight me as much as a darn good story. The real thing is so much more fun than fiction.

I was thinking about how much I wanted to get drunk last night. This is a very rare feeling for me and most of my friends know that I don't drink. I realized sometime in my 20's that I had never had a whole beer. While I admit and am proud to say that I was dancing more and crazier than any other person at the frat house, I remained sober. There were aprox 3 times that I got very drunk and those were the only times that I drank while in college. I never even sipped the rest of the time. It was either a shot or three or nothing. And in my 30s I realized that I didn't like the wine slurping that everyone else was doing. I bought my first condo on the money saved at the bars. I used to walk into The Trace and Billy would wave at me and pass me an ice water. I became proud of keeping my wits and my balance, esp on the tables.

I was wondering why I felt like getting drunk and I'm sure it is just the physical escape when I'm tired. I resolve to keep my record though because it just doesn't seem worth the drag it causes on my diabetes.

Well, the UPS just delivered my new copy of "Light Bread" - ordered from Amazon, written by my amazing friend Cordell. I suggest you buy it, of course. I carried my dialysis bags to the door to sign for it. One was dragging on the floor, half full of yellow fluid. Niiiiice. He was kinda cute.

trying to share the calendar: experiment

John is kind enough to help me with my google calendar. The "solvenator" as he likes to call himself, suggested that I make my own calendar for the dialysis nurses. I have voiced many complaints, here and otherwise, about their disorganization. (they lose my fax number each week, they lose my pharmacy number, they don't call in the scripts like they say they will, they take don't keep individual calendars, they answer cell calls at all hours, they don't have a receptionist, the list goes on and on...)

Today, unbelievably, Candy called and asked me on what day had she given me iron? This has been over a month ago and she didn't seem to have it in her file. She also mentioned last week that she "forgot" to take my aluminum levels, after drawing 4 vials of blood. (I got a quick lesson on high levels of aluminum, which has never been mentioned before. No more aluminum canned drinks or apparently, deodorant, though I'm just not sure because ....they've never checked my aluminum! )

So the Solvenator's idea that I start keeping my "health calendar" and that I send it to Candy the nurse is probably a good one. I can put my daily input /output of fluids, weight, BP and temperature (what I keep up with daily). The problem is: Isn't she getting paid to keep up with my blood draws and my schedule? Why is the further burden on me? After the big mess up last week (I was supposed to bring my PET test in. I called her and she told me no. Not to bring anything in.)I guess it is better that i keep up with our schedule. I sure am hard on her about her inability to keep a calendar. I haven't voiced this to her. I'm just harping here. Thanks for indulging me.

Who Deserves This?

I heard that someone in someone else's bookclub said that I was on a church's prayer list. I got a message that I am being prayed for in Knoxville. I have gotten over 300 prayer cards from First Baptist in Hendersonville.

I cannot write about this now.

Those closest to me continue to bring me dinner and order special rice for me and listen to me detail my day to the most boring extreme. John is sick for the first time in years and he hasn't complained once; he still insisted on cleaning up my bags last night though he had a fever.

I continue to make such remarkable progress. I have come to a new level of calm: not panicking when the exchanges do not go well. I am not so disappointed when I feel terrible. I am more often upset by grace and its meaning than having to arrange my schedule around my healthcare. Trying to understand what someone deserves and doesn't deserve is on my mind this morning as I work freely and happily.

I am energized by my work. I can help others. I really do love it and all of its challenges. It continues to teach me more about myself and beat me up once in awhile. Since I have so much to learn about how I react with others, I want to keep doing it for along time.

Let me know if you are there!

Thanks for letting me know if you are reading this! I need encouragement!

Thoughts on Waiting....Uncertainty

So many things are in my head - the last 2 weeks have been very full and I have so much to think about (it is so much easier NOT to think about it all and just play Scramble on line).

The things I've seen and heard over the last few days are almost too much to put here. And maybe because most things are removed from me, they are not necessarily life-shattering. But everything is effecting me strangely.

Acquaintances from high school lost their only daughter; another Goodpasture good man is having more cancer surgery; mom's best friend had her brain tumor removed and suffered horribly from the fear and confusion that the tumor caused. This is everyday news for a 44 year-old gal in her hometown. But I cannot help but have these incredible feelings of deep humility and gratitude for where I am now....and 5 hours later be perfectly furious and in tears that I haven't had a bowel movement. Really, after 8 weeks of dialysis - 4X a day, I am being so gentle with myself. But this morning was a challenge and again showed me how volatile and fragile one's mind can be.

A seriously low blood sugar got me downstairs into the fridge. at 5:30am. I had been dreaming about trying to get some grapes from the neighborhood association but they were all spoken for. The numerous adjustments made for the dialysate (sugar water) I'll save for my Nurse Practitioner Insulin Pump Specialist. (God, I love Angel) The dialysis fluid impacts my blood sugar significantly and I have to remember that....every minute.

Since I had to go into the clinic for my blood draw at 8.30 - I thought I'd go ahead and exchange. Nothing doing. I had run out of stool softeners the night before but thought i could double up on the laxatives. I never knew there was a difference before now.

Long story short, It is noon and I still cannot get the dialysate out of my body. I have tried more drastic measures, that I need not describe here.

In between the blood draw and the couch time, I have gone to look at some foreclosed property for a local bank. I was soooo excited to see that the property was in a neighborhood we will call "Fieldstone" and did some quick research on it yesterday. What a great area in Brentwood! No problem on getting the bank its money. In consideration of time and working on my bathroom visits, I sent Latte out to p/u the key and meet me at "Feildstone." Well, after a drive to Franklin, my researching team back at the office let me know that the house was off of I-24, basically in gangland! It was another "Fieldstone" in the Nashville area!

The real nice part of the story is that I did get a laugh out of everything that followed. The train tracks the house sat on, the 3500 sq foot deck and above-ground pool, the toilet in the closet. I laughed when I got on the interstate going the wrong way back to West End and realized that I was almost to Hermitage (how embarrassing to admit that here) I also laughed out loud when my phone died, but just before I got a call from Vanderbilt.....(OMG THIS IS IT. THEY HAVE THE PANCREAS!) But it was my client instead!

I was sad for the bank (is that possible?) and the appraiser that might get deposed! And filled with all kinds of inspiration to write some real estate articles about the market, etc.

I have projects I want to work on for future investment, some clients that need help, some great houses that really need to be sold.....I have much to do, I enjoy it and I am grateful. My challenge is to remain grateful and not resentful when there is pain.

(there is an arc of pain and weakness that can be directly proportional to my need/love/anger of Latte. Poor guy. This morning when I was hurting and sweating at a certain point, I only wanted his company. When it became more annoying and less painful, I was mad that he wasn't making me breakfast. Or rushed off to buy me another enema. What a brat I am. Yet I know that he is just ....here, so that he is really a true reflection of myself. And I am so lucky that I haven't chased him off yet)

The NYT (thank you from the bottom of my heart Phillipe) had a great article this Sunday about uncertainty. Apparently it can cause more stress in your life than anything. Our entire country is dealing with this now, so it is fitting that I have my own brand of uncertainty. Waiting for 2 organs, trying to get dialysis running on a schedule, etc.

The article, one of the most popular this week, states that uncertainty can be worse for you than bad news. The studies were adjusted for the overly anxious and covered several years. The wonderful thing is: "people underestimate their ability to cope with a bad situation." I knew it! I cling to this!

http://www.nytimes.com/2009/01/03/your-money/03shortcuts.html?partner=permalink&exprod=permalink

Holiday to the Baird's: "ChangeinPlans.net"

Happy Birthday India! I did try to call on your birthday but I must've had the wrong number again (upgraded the blackberry to curve, not storm). I love you lots and cannot wait to read posts. I have quit writing on mine because my patience and good humor have eroded. (dialysis is still taking 5-8 hours per day) My dear old friends Angie and Emily (married David T an authentic NYorker) are visiting which is lots of fun and keeps me very busy. I was thrilled to learn that Angie follows your blog as well and she is also delighted by your writing.

We've had many out of town visiters with game nights and pot luck dinners and lots of laughter. Tom and Rob came from San Fran -- Tom with an excel spread sheet of all the Meat and Threes in Nashville with hours open, whether they served catfish or homemade biscuits and other critical info. If i suggested a place that wasn't "on the grid" it started a whole flurry of research and phone calls, even a drive-by on off hours to see if we could peak at the menu. You can imagine that in between the long hours of dialysis, I was eating stuff that I never eat. On the first day that theywere to arrive, I drove home at 4:30pm in the complete dark. I believe it was the shortest day in the year). Tom & Rob's plane was to land and I was to pick up the first installment of food at Sylvan pak, specific orders of course. I panicked when I drove home and all the lights were out in Green Hills and on West End! What if the electricity was out at Sylvan Park? No food or cold food for Tommy! so i rushed over to Sylvan park (1 mile away) and was pleased to see the lights on, the only ones on the whole street. Tom Wofford came as well and it just feels more complete with him here. I feed off of his IQ - I cannot get enough of him. We laughed for 3 days but my mind was calculating the entire time.

I'm trying to get all 3 to move here. Rob & Tom are thinking of Savannah for retirement- Rob says it gets too cold here. I took them to Radnor which I think really impressed Rob. He took a dozen pictures and made one his screen saver. It was smoggy and cold and goregous. Evidence of beavers everywhere. Took them on a tour of the "star's" homes. Gene taught us how to make up the owner's of the houses as we drove past the giant estates. "That is Donna Summer's house" or "That is Michael McDonald's house" That is Dolly Parton's and so on... we did know where Donna and Dolly lived, but we didn't necessarily drive down to that neighborhood.. We played games with the Baker Family (in from all over) and Johnna even came to dinner one night. Instead of our usual party, we've had a dinner party or two with friends bringing food. I'm afraid Johnna left too early with the real "dish" going on after 10 while I sat on the couch doing dialysis. Seems like every dinner party now finishes with me doing another exchange while someone else cleans the kitchen. I am so blessed. Someone else has helped with the cooking. Kim And Bruce have become more than family to me. and my family are saints, including John.

So it has been a beautiful busymonth of lots of visitors. I am sending Rob weather reports of freezes in Savannah and lots of gay-interest art and events here in Nashville. Tom H and Tom W are both pulling to move here. One night we played Balderdash and got so tickled when David (big Italian, old downtowner from NYC) used the definition "a beautiful flower that grows above the treeline and is a harbinger of spring" Tom said, "I don't think the dictionary is so romantic" and we laughed about how each player thought differently but consistantly. The next day he wrote a thank you that said "I want to live in a place where people talk about the NYTimes OpEd piece and laugh at things like the 'harbinger of spring'" It made me feel so good! I think I may get them here in the end.

The other big change this holiday is all the dinners & parties I had to miss. John and I have been getting away with 2 parties a night during this season for year- Nashville is so small and since we are sober, we can go from place to place easily. This year we've had to stay home, which has been mostly fine. I still have a lot of calls to make about why I said I was attending their party and then didn't. But the visitors to my home have been nice.. oh, and John had a last minute Holiday Open house and Art Show. Sold 5 paintings!Also cousins came and other friends to the Musci City Bowl and today Christine from Hawaii arrives. I am on my 2nd hour of my first exchange today(i do four) and you'd think I could accomplish alot here on the couch. but i am feeling stuck and fighting the anger and tired of waiting. Tara Brach has some quote about pain being multiplied by resistance and I do understand that. I just have to keep occupied! Anyhoo, thanks for reading my long notes and rambling. Let me know what the plans are. Don't forget more pictures...you are an amazing photographer India. I'm so glad you were born and that you are my friend. LOVE PEACE