Losing Momentum.

I am slowing down. My body can no longer keep up. The first few months of Dialysis were not that difficult, compared to most you could say that in the beginning it was easy. I am running out of steam. Losing gumption? I have straight run out of STAMINA. I now sleep, most of the day. I can no longer do anything remotely physical on my D-days. It's really bummin me, to think that I am now feeling EVEN WORSE.

And as conditions continue to decline, so does the sympathy. It seems as I start feeling shitty-er, people are expecting more from me and cuttin' me a lot less slack. I don't like to use my illness as an excuse, but unfortunately a lot of people forget I am sick. My entire life I have gotten shit, because I don't "look sick." Sometimes I think my own Dad even forgets that I am not well. He is frequently frustrated when he comes home and I have spent most of the day writhing in pain on the couch, almost as if he doesn't remember the 'writhing in pain' part.

I. Am. Grumpy. Another side effect of this disease! When you feel like a 20 year old stuck inside a 97 year old woman's body, irritability is sure to in sue. If I snap at you, that's why. I'm not angry and I don't enjoy treating people poorly, I am just sick and fucking tired of feeling this BAD all the fucking time. Does the cursing help to demonstrate my point? Because me being grumpy is NOT about YOU, it's about ME. And I do not care, anymore, if you had a bad day at work, or you broke a nail. All I care about is not throwing up at any particular time of the day. (okay, that's kinda a lie, I really do care about the individual hardships of those around me, I'd just appreciate having some thought put into what you are complaining about)

Another factor in me slowing down, is the news that they are kinda sorta forcing me to make a decision as to what I'm going to do from here as far as my access is concerned. I have made up my mind, but wont get my way. I don't have enough in me to work as hard as Peritoneal Dialysis is requesting, but the most awful thing I could imagine would have to be a FISTULA. boo. But, this catheter is just a walking infection risk, and I gotta get it out of me, sooo this afternoon I go in to see a vascular access surgeon to figure the best arm to use and schedule the operation, talk about bummed! but at leeast I'll be able to shower in, like, three months!

There's no such thing as a Dialysis vacation.

Last week I decided to get away. With one week left before school starts, and a general hate for my small suburban town, and most of it's occupants, Southern California was the place to be. A sweet family that has part way adopted me in the kindest way possible, informed me that if I were to get a dialysis transfer to San Diego they would buy my plane ticket. THEY ARE PAYING FOR MY VACATION AND WE ARE NOT EVEN RELATED. These people have already opened their hearts and their home and their lives to me, I am already like a daughter to them. They are so kind, and I am thankful every day that I have Carol, Paul, Daniel and William in my life.

After filing the necessary paperwork, and doing another TB test, I received the OK to dialize down south, and Carol bought my ticket! That Tuesday morning I left Oakland airport, knowing I would not have to worry about my medical troubles for at least another 30 hours, and for that I was thankful as well.

The weather was beautiful and my days were spent with old friends I hadn't seen for years, new friends that I became quite fond of, generous hosts, lounging by the pool, shopping in La Jolla, gourmet cookies shaped like whales and kittens, delicious sushi, and last but CERTAINLY NOT LEAST, debatably one of my favorite days of the year, SEA WORLD. Where Carol and I got to experience the "soak zone," coo over perty baby sea life, and I almost pee'd myself like a thousand times out of pure excitement.



That entire week there were only two times I experienced any kind of stress or dysfunction, save the obvious overload of family togetherness, Wednesday and Friday. Yep! Go figure Dialysis would worm it's way in and fuck everything up.

WEDNESDAY: The family had a Padres game, and I had Dialysis, I wasn't too hurt, most baseball games are pretty much the same and I can go to those here, but boy was it inconvenient. After having the whole car yell and grumble as we tried to locate the San Ysidro Dialysis facility on 30th street, downtown, it became more and more apparent that I may be looking for a facility that didn't exist. So, I called Davita, lo and behold! there are two 30th streets in San Diego. Aaaand the mix up was not even our fault! Imagine that. They have the wrong address plotted on the map and it shows that San Ysidro is downtown and closest to La Jolla. AWESOME. after driving another 40 minutes, I arrived at San Ysidro. Right at the Border, below Chula Vista. Really? This kind of luck is special, and I am the only one "blessed" with it, because I'm probably the only one that can handle it.

Fortunately, we managed to get there ALMOST on time and although Carol was about to kick ass and take names, and I was mostly just nervous about being in a different facility at a different time of day, they were nice and apologized, and then they hooked me up to the machine and sent Carol and the fam on their way to the baseball game! I was only terrified and alone for a short time before a handsome young gentleman friend of mine who lives in San Diego, came to my rescue and protected me from the crazies in San Ysidro. We asked them nicely to transfer us to the other dialysis facility for our last day in SD and they called over and imidiately obliged!

The second facility was closer, and seemingly less stressful to drive to and it was all planned out who would drive, and when we would leave. Until I went to take a nap and left three young "adult" males in-charge of making sure I woke up on time to leave! Needless to say we left 20 minutes late, didn't know where we were going (to drop someone off and pick up actual directions) and I was still half in nap-state. Well, shit.

Eventually, we found our way and I was only fashionably late. Dializing until 10:30pm was pretty unfortunate, but most things related to Dialysis are unfortunate.

We belong here, together, none of us deserve to be sick.

Always leave enough time in your life to do something that makes you happy, satisfied, even joyous. That has more of an effect on well-being than any other single factor.

Why is it all worth it?

Since starting this blog, my oh-so small support system has grown. I depend heavily on those that are close to me to get me to appointments, drive me to dialysis, take me in for the occasional broken arm or other various non-kidney injury. I literally am living for those that help to take care of me. It's not hard to notice that as I get more sick, or the longer I remain sick, the 'bandwagon friends' start dropping like flies. This is a turbulant disease that really helps me to see who my number one fans are. Just as I stared to feel like I no longer had support from some of the most important people in my life, I got the most excellent dose of faith, hope, luck, and love.


From 2002-2008, every summer I had the most wonderful experiences that were, hands down, my 'saving grace,' if you will. Every July, Saint Dorothy's Rest opens it's doors to the 'critically ill' (although I don't agree with the term, it's somewhat accurate) and allows Transplant patients just like me to attend an entire week of summer camp with little-to-no cost to the children/families. Being at Health Camp is almost like being in another state or on another planet. For 5 days I got to live in a place where we look at you funny if you AREN'T sick. A place where, reguardless of your 'boob tubes,' gnarly scars, or medication side effects, you can be yourself and everybody understands more than anyone at home ever will.

Unfortunately, as I'm continuing to find out little by little as I "grow up," all good things must come to an end. In 2008 I had to say goodbye to the redwoods, and the Farmer Lodge, and my friends from all over California and out of state. Not just friends, but family. Empathy is one thing, but you will never be able to understand my attitude or feelings until you are right there with me, taking the meds, taking the scars, and managing to deal. I still have not made it back to the redwoods, but once in a blue moon, I get to see my friends.

Tuesday night, Molly the Heart transplant drove down to Livermore from Roseville, Wednesday we drove to SFO to pick up Annie the Kidney who flew in from Nebraska and Raven the liver from Oregon. Today Amanda the Liver is driving in from Fresno, Saturday we are all going to Stanford to pick up Trista the Heart as she gets home from her last year at Saint Dot's, and Sunday Lexi the Kidney from Los Gatos and Jimmy the Kidney from Union City are coming out as well and we're all having a big barbeque. I feel at peace. I belong. I am confident and happy.

It almost makes me forget I'm sick. It almost makes me forget the people staring at me. It almost makes me forget all this crap. Almost.

Lefty's Revenge

In my "Dialysis bl0g" I wrote about some days being better than other.
"With dialysis there are good days and bad days. The bad aren't too bad, and the good aren't great."
I don't think that was as true when I first wrote it as it is now.
(oh great I'm already quoting myself)

On an emotional level, the big D has got me a little.. frazzled, to say the least. It is something I have to do every Monday, Wednesday, and Friday. I can't call in sick, reschedule, or make up an excuse to not go in the Monday after a holiday. No long weekends in Tahoe with friends, no watching the fireworks on rooftops in Oakland, and no sunday quests for an adventure in San Francisco. Reguardless of my physical limitations, missing these big events just for Dialysis is getting tough. Instead I sit there, struggling to feel stong enough to get up off the couch and move to my bed. Dialysis and I could use a vacation. Some time apart from this life-sucking husband would be just peachy. But that can't happen. We're joined at the hip, unfortunately.

Each day at Dialysis I weigh myself on their fancy huge scale, and they see how much fluid I have gained (real talk: I pee one time a day, and that's it) based on comparing that to my 'dry weight.' (how much I usually weigh when I leave D) My time on the machine is not only made to filter all of my blood through my small plastic kidney, but they also take off the extra water weight. Taking off 2-5 pounds of water weight over the course of 3.5 hours is NOT as easy on your body as it sounds.


The physical effects on my body are becoming more and more difficult to adjust to. It's like the fatigue is building up, I am finding it impossible to not sleep through Dialysis, (why my blogs have been trickling through slowly) and on my off-duty days, I am finding it impossible to wake up before 3pm. Currently, my head is POUNDING and it wont stop for hours, my legs are already starting to ache and probably wont stop all week. I am constantly uncomfortable, sitting, standing, sleeping. And on days where I am free to go on an adventure or enjoy nature, I'm too exauseted to walk ten feet and sit on a fucking bench.

This is especially difficult, because no matter how sick I have gotten, I have always had my same positive affect and smile, and you can't exactly tell by looking at a Kidney that they are sick. The validity of my illness is questioned everyday. From asshole Mr. Wooten in middle school P.E. class, to JUDGES in COURTS, to every single person that has ever employed me, to friends that "don't understand why I cant just do it."

I'm sorry. I'm trying the best I can, there is just a lot less of me to go around these days. I want to do everything my friends do, and I want go camping, I want to take a break, I want to call in sick to Dialysis, I want to go swimming, and I want to be able to take care of everyone that depends on me. But I'm weak, and I know it.

Stop reminding me, it sucks.

peritoneal vs. hemo with a fistula

The tunnel catheter I currently have placed in my juggular is apparently somewhat of a high risk for blood infections. Go figure. the "tunnel" part of my spiffy cath is for more long-term dialysis care, as it is thought to make infection less likely. There are very few catheders at my dialysis center, because catheders are for new patients that had no warning, and needed dialysis right away. I had no warning, I needed sialysis right away. On my very first day of "D" I started hearing the question P.D. or Fistula? In all honesty I didnt even really know what that meant, but I knew I did not want a fistula. Because the tunnel cath IS temporary, I am being forced with making a quick decision.

A fistula would be the "easiest" way to go. But it is most unsightly.

This is a very nice fistula, they can get a lot uglier. To create a fistula, a vascular surgeon joins an artery and a vein together through anastomosis. Since this bypasses the capillaries, blood flows rapidly through the fistula. It is usually placed on the non-dominant arm. This for me means my left, and although I would prefer to have it on my upper arm, I have a tattoo on my upper left that I am quite proud of and do not want to destroy. This is really what I would like to do, but I have enough unsightly scars, and I dont think I could handle a fistula, too.

My next option, gives me a TON more freedom, but with freedom comes an influx of responsibilty, as always. The P.d. tube is much more hidden than my current cath and a fistula.

Peritoneal dialysis uses a natural filter inside your body—the lining of your belly, called the peritoneal membrane—to remove wastes and extra fluid from your body. The dialysis fluid fills the belly and pulls out extra minerals and fluids from the bloodstream, these wastes then drain out of the body along with the dialysis fluid into a collection bag. P.d. is done at home, so they send you a months worth of supplies (tons of shit) and you have to store it and you take classes and you learn what to do. it's done by hand so I can pack up a car load of "the shit" anytime and go wherever I'd like, and they will ship supplies pretty much anywhere I want to travel. With this I am also allowed to eat or drink more, and might FINALLY be able to shower (I have not showered since March 17th, and counting.) after mastering the art of P.d. I may be a candidate for a night time "cycler", which dializes overnight, and grants me even more freedom.

Sounds like an easy choice, but my reason is more complex than which is "easier." I like hemo dialysis, I enjoy the people here, techs and patients alike. And I like that I pack up in the morning, dialize, pack up again, and I get to leave all the medical stuff there and still have one place I can kindof "escape." I barely even take pills now so I dont have much medical shit at home. I like it that way. With a fistula that can continue, and with P.d. it's in my room, it's in my closet, it's in my car. It's all over my life.

And it seems even writing this all out has not gotten me any closer to a decision :/

"It's all part of the process"

On May 28th I had my extremely stressful, and extremely confusing "assessment" for UC Davis Transplant services. This was big. Big enough for me to show early to Dialysis and only run for one out of my three hours, scheduled to finish at noon the next day with a two hour Saturday sesh. I was running late. I was doing my make up and changing in the car, and we didn't really know where we were going. UCdavis has a satelite site in Walnut Creek that I was lucky enough to wait two months for an appointment at, at an inconvineint time. As my mom and I rushed to a medical offfice we weren't familiar with, we argued and bitched, because thats what we do when we're stressed, and lately we're always stressed. We got there at exactly 11:15, exactly 15 minutes late. These appointments are similar to job interviews, only instead of making money I'm being paid in Kidney. My first interview was with the Social Worker, who was compelled by my story and assumingly loved me from the start. Next we filled out paperwork with the Nurse, then went in to see the Doctor. He was rude, and pushy, and didn't think I knew anything about my first transplant or my medical history. I did. I knew everything. Through the appointment there was limited (but not less upsetting) bad news, and aside from the RN calling my Mom fat and telling her to quit smoking (Bitch) and informing Dad of his high blood pressure, we were content and left hopeful that soon I would start testing donors at our new hospital.

Precisely two weeks later we got a letter from UCdavis, THE letter. When Mom informed me of the news, we were at a family shindig, and she had decided not to bring it along. All I could think about was what the contents of that letter would show. After the longest car ride home EVER from San Ramon, I rushed to the mail box, and tore open my letter. I skimmed ahead and read the very last word I wanted to read.

UNFORTUNATELY

I was rejected. We had lost our best option. I no longer have hope, and I'm no longer excited. I no longer have something to keep my spirits up while I moan through the leg cramps, nothing to keep me smiling through the nausea, and nothing to keep me from crying when my body aches so bad I cant walk. So what do we do now? We visit UCSF in October-as planned. I'm just going to try and be less disappointed when they turn me down too.

Dialysis, a whole new ball game.

On March 19th I had my first morning of Dialysis. I got there at 7am. I didn't know what to expect. I had heard the horror stories from fellow "kidneys,"(when you have other transplant friends you just call 'em by their organ of chioce) including but not limited to leg cramps, nausea, headaches. I was also told by some that it made them useless for the rest of the day, long naps are a must, and eating in restaurants would be a thing of the past thanks to the dietary restrictions. Most of this is true, some days. With dialysis there are good days and bad days. The bad aren't too bad, and the good aren't great. The "good" part about the big D is the Support system that goes along with it, I have a Dialysis family. Leslie is my most favorite RN, she greeted me on my very first day with a smile and something to laugh about, we enjoy talking about restaurants, and oysters, her ipad and gossiping. Alice, the other RN is a close second. My first Day, the Dialysis tech that helped me giggle through it all, was Scotty. He was a knucklehead with the best intentions. Goofing around was only part of his schtick, we had long conversations (that sometimes got him in trouble) about all kinds of things. It was nice not being alone, it was nice being able to laugh during one of the hardest times in my life. After Scotty came Jasmine, a fabulous german that also helped make me smile. Now i'm on the complete opposite side of the room with Oscar. Oscar and I get along famously and we always have something to talk about, he get's bonus points for complementing my hair all the time, and commenting on me losing weight :p did I mention weight loss is another part of dialysis? first I lost the water weight I had been storing up for the last year, and with the changes in my diet and loss of appetite, my body is looking 23 pounds lighter than it was in March, and I'm not complaining. I've also got Laura, who is oh-so sweet. Jamilla, who would go to the moon to help solve my issue with adhesives. Connie, she runs the joint, who is fabulously tan, has perfect pony-tail hair and works her ass off. (like evryone at DaVita Livermore) Rita at the front desk, always has a smile for me. Cynthia the dietician is highly qualified, very helpful, and very cute. Anne, the social worker would help me with just about anything I asked. These people help to get me through it. I'm so thankful that I was admitted into this Dialysis center, in my home town, with these great people taking care of me. It's little things, like having them in my life, that make giving up that much more impossible.

Boob Tubes

On March 17th of this year, I showed up to general surgery at Walnut Creek Kaiser, nervous as hell, to have a tunnel catheter installed in my Juggular for Dialysis acess. Right on my chest. Two tubes coming right out of my cleavage. Awesome. After getting past the idea that I would soon have a "boob tube," I started thinking that getting over the aesthetics may only be a small part of the recovery. Boy was I right. My dad and I sat there waiting for an hour when someone came up and told us that it would be about another hour, someone sicker than me needed my surgeon in the OR, we didn't mind, we never do.. It was another three hours, and finally they wheeled me downstairs. My heart started racing. I was very obviously anxoius as I discussed the various drugs they would use to dope me up, it was a conscious sedation- that's right folks, I was going to be conscious while the doctor dug a hole in my chest and shoved a tube down into my heart. And my anxiety was not curbed when I was wheeled into the cold sterile room, as they dowsed me in iodine and covered my face with a medical "sheet" of sorts. Not being able to see a procedure being performed is something I have a real problem with. When I can see what doctors and nurses and other medical staff are doing to me, I have a sense of control. I watched and listened carefully to what I could on the cold table in that cold room, with my face all covered. And slowly my speech started to slur and I drifted into a nap, a drug-enduced, plesant dream, lovely nap.(which I was later told required more than three times the "normal" amount of medication) And then I woke up.
FUCKING OUCH. I felt like a torn up rag doll that just lost an arm. It was some of the most excruciating pain I have felt, and I have felt a lot of excruciating pain. I would now lose my right arm, and most basic movements of my body for about three weeks, and I am not allowed to shower due to risk of infection, things we're going to get worse before they got any better, but I could finally feel alive again. I was ready for my first Dialysis treatment. I was ready to feel better.

I was born with one kidney... part two.

I woke up about thirteen hours later, with a 7 inch insicion and 37 staples in my abdomen, a crazy IV in my NECK, and a wicked bad case of dry mouth. Some of the Nurses I had that week in ICU and two weeks in 3W literally saved my life with their compassion, tricks, and tips. One of my fondest hospital memories involves my dad sneaking me Mike and Ikes to suck on during the week I was prescribed not to eat anything for fear of nausea. Our family and friends made survival possible that month, with rides to school for my younger brother, house and pet sitting, and an unbelievable Chirstmas set up to keep us believing in Santa, because my parents did not have the time and money to do it themselves.

We were ordered to stay closer to stanford than our house was, so we were set up at the Ronald McDonald house for a month and a half or so. Another home away from home, we had beds, and a kitchen with a pantry, a helpful staff, shuttle service, and tons of prizes and presents to keep me happy, we went to stanford for blood tests daily. I built some solid friendships with other "sick kids" and my family somehow survived the worst thing that could happen.

I had to have frequent blood tests and biopsys, but as the scars started to fade, and I started getting to a heathy weight, the crazy things I had to do each day (including taking my blood pressure, drinking 3.5 liters of water daily, and consuming a plethera of immunosuppressive pills) started to become our normal and we got used to it. It was what we had to do, what I had to do.

Everything went smoothly and there were little-to-no complications for nine years. Until last July when we got a bad call. Again. Another call that would throw our lives into a similar panic. My cratinine was high (which means kidney fuction is low) and we were facing our first case of rejection. That panic has become the last year of my life, and has included the entirety of my summer being spent in the hospital, (and part of my fall as well) some emergency room visits at odd hours of the night, headaches so bad I was throwing up, 6 rejection treatments that all included a slough of unbearable side effects, over a thousand bajillion IVs, (my veins aren't what they used to be) some rough moments in Isolation, and a couple of blood transfusions. That doesn't even begin to cover it, but I don't feel like writing seven more pages right now.

In February this year, I was given news that is still hard for me to swallow. After completing one of my terrible immunosuppressive treatments, Rituximab, and being sedated for yet another biopsy, I was ready for the final report, and to be released from the hospital. Again. I was never really alone in the hospital, I always had dad, mom, brother, friend, uncle, grandma, someone. When the doctors walked in I was all alone and just as upbeat as I always am, excited that I would probably go home! Dr. Steven Alexander came in and shared that he had "good news, and bad news." and asked which I would like to hear first. I quickly responded with "Uh good, duh" and he responded "The good news is, there is no longer any sign of rejection" i was overcome with joy. THIS WAS WHAT I HAD BEEN BATTLING FOR ALMOST A YEAR NOW. oh. my .gosh. Was pretty close to my reaction, until he started in again, with the bad news. "The bad news is, your kidney has retained too much damage and scarring, and cannot be saved. you are going to need another transplant." what. the. fuck. is more like it, this time.

I was born with one kidney... part one.

bear with me. these first few are going to be long, but condensing twenty years of medical struggles into a few paragraphs is not so easy as I thought.

Well, it's more complicated than that. I arrived on this Earth on April 3, 1990, supposedly around 5:14 PM, but the details are a little fuzzy for me. From day one, I was complicated. The doctors discovered I was born with one normal, heathy kidney and Prickly Pete, the name that my non-functioning, peanut-sized kidney would eventually pick up. The doctors were not concerned and said I would live a mostly normal and healthy life, little did my parents know it would be anything but.

At the ripe old age of 18 months, I had my first operation. I was experiencing frequent Urinary Tract Infections which led to reflux (Urine backing up my ureters, back into my kidney) which led to scarring and damage done to my only working kidney. At age nine came more bad news, the doctors office I was previously associated with but had not had follow up with for years called and asked me to go get some simple renal (kidney) function blood tests. When we were called in for an exam and office visit they informed us that the frequent scarring was causing major irreparable damage and I had about 50% kidney function. in December of 2009 I underwent a ureter re-implant to try and prevent further scarring.

In April of 2010 we we're told the surgery was unsuccessful and that I would need a life saving kidney transplant. We immediately met with the renal team at Lucille Packard Childrens Hospital, and got things moving. After testing my mother and father, we were all quite pleased to hear that I had not one unbelieveable match, but two. From April-November that year, life was a blur. It was a situation I do not wish on any nine year old. Daily blood tests, and a completely restricted diet, that I didn't really understand, but I knew I couldn't have chocolate or salt.

Even at such a young age, I could comprehend my parents grief. It's tough being a kid with a problem, I'd imagine it's even worse being the worrysome parent of a kid with a problem. It was a great relief when we learned that either one of my parents could deliver the life-saving kidney I so desperately needed. And, although I was not invited to some of the adult discussions about who it would be, I knew my mother had to do it. I knew she wouldn't let anyone else.

On December 6th, 2000 I went into the Operating Room at LPCH where my mother was admitted just 5 hours previously. I had the support of my father, brother, uncle Dan, and Joe Bondad&Anne Marie, friends of my fathers. I remember starting to feel loopy, and I remeber my brother and dad walking along side my gurney down an unbelieveably long hallway. I remember crying, saying I wasn't ready. I remember going into the OR and hearing the noise of various metal instruments clanking together. I dont remember much else..