TRANSPLANTED

CooCoo For CoCo...

2010-01-18T22:55:00.007-06:00

... Coconut Rice Pudding, that is!
Here's the recipe for tonight's yummy dessert. This is a great way to use up leftover rice, have a tasty protein-rich treat, and it's so easy to make!

3 cups cooked rice
1 1/2 cups coconut milk
1/4 - 1/2 cup brown sugar (or honey, to your taste)
2/3 cup raisins (optional)
1 teaspoon vanilla
1 egg, beaten (or egg replacer; this is optional)
1/2 teaspoon cinnamon
optional toppings: toasted coconut, nutmeg

Cook the rice, coconut milk and sugar at medium heat for about 20 minutes until thick. (If the rice is extremely dry you may need to add more liquid) Add the raisins and vanilla; continue to thicken until desired consistency. If you choose to add the egg, lower the heat and do so now, whisking it in until throughly mixed (about 2 minutes) Stir in the cinnamon. Serve hot or cold. Watch Conan and Enjoy!

The inspiration for this delightful dessert comes from my new resolution (which just happens to coincide with the beginning of a new year) to improve my energy and vitality. My eating habits are pretty healthy to begin with, but I've gotten into a few bad habits. (Hey, can I help it if I've gotten addicted to cheese while living in the freakin' dairy belt?) Unfortunately, even this kinder gentler Hep C treatment that I'll be taking is known to cause fatigue. So embarking on this journey will require as much of a foundation as I can build, right from the get go. So... who ya gonna call? Fatbusters? No, silly, call a food guru!

So last week I asked my good friend Mark Powell to stop by for a visit. Mark is not only an amazing nutritionist, he's a comic book geek (Marvel only, please! except for when Jack Kirby was at DC) and I'm selling his childhood collection on eBay. I originally met Mark through a few mutual friends. I was having a lot of back pain at the time; the chiropractor I'd been seeing was unable to help. I'd been told that Mark might be able to do something; he's a rolfer as well as a nutritional counselor. Long story short, Mark did what he could and encouraged me to get an x-ray, which eventually led to the discovery of a diseased bone. Some of you know that I'm a real bionic woman now, with a titanium hip. But that's not the point of this particular post. The point is, I spent several months working with Mark and his Super Healthy Eating program. It made perfect sense for me to ask his advice, and stand-up guy that he is, he immediately offered to give me as much counseling as I need. How lucky am I?

Mark and I had a good, long talk to refresh my memory on some of the basic principles of his program. Rather than try to paraphrase, I'll just direct you to his blog, which is informative, funny, and a darn good read. You'll find it here: http://superhealthyeatingsystem.com/
This morning I started to ease my way into things with a couple of juicy oranges, then about an hour later my favorite brekkie treat of pancakes made from Pamela's Gluten-Free Baking Mix. (note: this is a bit of a splurge and a sidetrack from the "plan" but way better than having bacon and eggs, yo) Those carbs kept me going through a morning of phone calls: to the pharmacy to order my meds, to the clinic to schedule my class session (I could just call this my Injection Refresher Course), to my pal Misti to line up tickets for a girls' b-ball game... and then some time spent taking photos for eBay, sorting through comics, and then... a nap.

Maybe you can tell by now that I really like talking about food, almost as much as I like eating it. Lunch was a huge salad of baby spinach greens, topped with chopped avocado and celery, a sprinkling of raw hemp seeds, and a super-delish lemon/tahini dressing (easy to make: 1 T tahini, 1/4 lemon juiced, a small amount of honey to sweeten) Sprouts would've been a great addition, but I didn't have any in the house. Oh well. I managed to finish putting it all together just in time to watch Jeopardy, then packed up some boxes to ship out tomorrow and cleaned up around the house. Maybe it doesn't sound like much for a normal person, but for me, one day of no dairy, being strictly gluten-free (yeah I cheated over the holidays, dammit) and getting a good amount of "clean" protein, and I've already noticed an increase in my energy.

This is good. Not perfect... maybe tomorrow I'll try to take advantage of the slight thaw we're having and take a short walk. Meds will be delivered on Wednesday, Thursday I'll head over to the clinic for that class and figure out how to schedule these injections so the fatigue won't be so bad. And I'll keep on finding foods that'll give me the most bang for the buck. I'll keep y'all posted on that. Thanks for listening.

peace out,
Laura

It's a Long Story...

2010-01-17T17:33:00.018-06:00

Last night I hung out with my old friend Eileen, who's passing through town on her way to Montana. We hadn't seen each other in years, and there was a lot of catching up to do. Of course I've followed her career somewhat, and she's known about my struggles with health issues, but it's hard to know anyone's real story from a distance. And we all have REAL stories, don't we? What's struck me lately, whenever I see an old friend, is how tough and resilient and fucking awesome we are. Us New York City kids from the eighties, often transplanted from other cities, other countries, occasionally other planets (take a wild guess who I'm talking about) - we've kicked ass. We've taken names, too - and a good many of us have not only lived to tell, but are rockin' the telling and rollin' the living in a way that's inspirational. In a way, frankly, that underscores a salient point about this whole "eighties revival" we've seen. It just seems to keep on going, and going, and going... it's the energizer bunny of retro revivals.

That, to me, is a testament to our sheer awesomeness. Whenever an old pal passes through, it's the BEST! Seems like, regardless of how long it's been, or how little we've kept in touch, the connection is still so close it's rightthere. And I believe it's got a lot to do with having lived through the 1980's together and, as Eileen pointed out, having lost so many of our friends at a young age. We've survived, and mostly we've thrived. Whether it's Eileen with her poetry and teaching, or Kiki and James and Michelle and Zoe and Linda and a whole bunch of others with their art, or Barbara with her jewelry, Tamera with her handmade shoes, or Ann or Marga with their performances, or Richard and Jimmy, or Sally or Adele, James and Dee with their music, Richard with his writing and producing and uh... whew, Lydia of course and wow... we keep going, and going and going. I defy you to tell me that all of us weren't defined by that moment in time that we shared. This has been apparent to me for a while, but more so now that we're a decade into the oughts. We were blessed to come together in this life at a time that defined the End of a Century.

But getting back to last night... man, it seems like every time I try to answer a question lately, I end up sighing... "it's a long story..." Moving out here? That's a long story. Do I ever play music, or what have I been doing, what kind of work? Looong story there. Going back to school at 46? That's another one. And the long slow progression of my Measure of End Stage Liver Disease? Holy Encyclopedia, Batman, that is one long-ass story. At a little more than one year since my liver transplant, it's a good time to reflect. And as I prepare to start treatment for Hepatitis C, I'm leveling up on my knowledge of the disease yet again. The support that I've gotten from family and friends has literally kept me alive, and I'll continue to rely on that for strength. Keeping you all informed as I embark on this stage is a pretty vital component of my strategy. In case you didn't know, I have every intention of beating this motherfucker and keeping this liver for a long, long time. Word.

WARNING: This part of the story may contain details of a graphic nature:

A little background on my history with this scourge of an illness. Contracted it in the 80's, no surprise there. Most likely from a brief dalliance with substance abuse, but hell... could also have been from an unsafe sexual encounter (yes, dear readers, I like boys too... maybe not as much as I like girls, but I like 'em just fine) and maybe even from my first tattoo. Remember how those used to be illegal in NYC, and you went to somebody's apartment, and who knows whether or not they replaced those needles? Damn. Those were the good old days.

So then I got clean and sober, and after that I saw a doctor, and blah blah blah and AIDS was happening and so I was checked for HIV and told that I was negative. I did, however, have some weird "non-A, non-B" hepatitis that was so new it wasn't even named yet. With a great doctor I kept pretty good tabs on my health. Through friends I learned a lot about nutrition and other types of healing. Stayed good and healthy while others were not so fortunate.

One day the doc tells me that he's about to embark on a study - a new treatment plan for what's finally being called Hepatitis C. Because of my awesome good health I'd make an excellent subject for the study, with a chance of clearing the virus from my bloodstream. Hmm, interesting opportunity. Get an expensive treatment, totally free of charge, and remove a potentially life-threatening illness. Risky, but other than a slight case of anemia (we couldn't ever pin down the cause) it seemed like a no-brainer. I said yes, and Dr. James Braun sent me to his partner Dr. Douglas Deitrich, who was heading up the study and managing the treatment.

At that time, the experimental treatment plan consisted of twice-weekly injections of Interferon and a daily dose of Ribavirin. Sorry I don't remember the dosage, but it was higher than what's currently in use, and it was a bitch. Loss of appetite was so severe that the doc would remark (off-the-record) that I could benefit from smoking marijuana if I was so inclined. I wasn't so inclined, because I honestly didn't like it. Lord knows I'd smoked plenty of it over the years, especially as a teenager, but probably because that's what everyone else was doing. Anyway, if it were only the weight loss and the fatigue, I might have gotten through. Depression was also a side effect, but anti-depressants seemed to take care of that.

Throughout all this I was still able to make it to my job selling real estate; my boss was wonderfully forgiving and understanding. At about two months, the drug combo was kicking the virus' ass. The level of HCV in my system had started out at 16,000,000 and was already way down in the 1,000's. There was no doubt that a complete span of treatment would clear the virus. But what really started to kick my ass was anemia. Not just the anemia I'd started out with, but such devastating loss of blood-cells that I began to look and feel like walking death. The drug pro-crit was prescribed; I was taken out of the study, but advised to remain on pro-crit, which eventually turned out to be ineffective and probably shouldn't have been prescribed.

Now, let me tell you something that many of you may not realize. When you enroll in an experimental drug treatment you sign a form stating that you understand the nature of any risks involved; that you will not hold the doctor or the hospital responsible for any potential negative outcome; and that, should you be unable to complete the treatment, your results will not be included in any on-going study. Yeah, that all makes sense. But here's the kicker... somewhere in the fine print... and what you really didn't pay attention to when you signed, was the proviso that you yourself would have to take full responsibility for any medical costs that may be incurred, in the event that you withdrew. Hmm... remember that drug, pro-crit? The one that the hematologist prescribed to "fix" the anemia? The one that ended up not working, but that I was told to keep taking anyway? That stuff had to be injected... daily... and it cost about $100 a pop. My insurance at the time covered about 60%, with 40% coming out of pocket. Yeah... that's right... I'd been clean and sober for over ten years and suddenly had a $40 a day legal drug habit.

Okay, as you ponder that, let me interject a thought. While it totally sucks that this illness has defined me, sometimes for years at a time, I've somehow managed to grow through it. I'm not going to call it a spiritual awakening, because there's always been a relationship with a higher power in my life. But there's a strong sense that the universe will provide. That what is meant to happen will happen. And that regardless of what happens, it's going to be just fine. In fact, to paraphrase a lyric, better than fine.

So... long story short, in the aftermath of this, a casual acquaintance appeared... a friendship blossomed into a relationship... A long-distance affair ensued, and being more than ready to leave the big apple, I headed to the mini-apple. I've never really looked back and I've certainly never regretted that decision. This city has been good to me. My partner's support was, of course, invaluable. There was time to heal, and then there was time to embark on a different way of life that fit me like a glove. Parks and bicycles and lakes and gardening. Farmer's markets and lots of music and interesting new people. Time to heal and figure out who I might be now, and what I might do. A big house and filling it with art. Music and more music... not playing much, but listening a lot. Not being very ambitious, to be honest. Just being.

Somewhere along the way I began to trust the medical profession again, at least enough to get back on the horse. I found a terrific doctor named Craig Peine at Hennepin County Medical Center, who correctly diagnosed me as having celiac disease, which turned out to have been the cause of my anemia. Thank you, Dr. Peine, and that dreaded procedure known as an upper endoscopy. In case you've never heard of it, it's where a little tube with a camera goes down your esophogus and photographs your intestinal tract. Yes, this does involve being sedated to relax the gag-reflex, but you're awake during this procedure. Pretty weird watching a camera go down your throat... and could be really cool to watch if you weren't being choked to death at the same time.

Now, a gluten-free diet is the only cure for celiac disease, and being gluten-free pretty much guarantees a 500% improvement in health immediately. Anemia? Gone. Asthma? Allergies? Pretty much gone, except for animal dander and dust. Flash forward... gluten-free girl, that's me. And, as I said last night to my friends, Minneapolis is probably the best city in the world to live with this particular disease. We have great food co-ops and gluten-free bakeries and restaurants that serve gluten-free meals. Sheesh, as most of my friends know by now, we have gluten-free pizza in compostable boxes, delivered to our door by guys and gals wearing super-hero costumes and driving electric cars.

This is a pretty roundabout way of saying that I'm not scared about the new and improved Hep-C treatment. In fact, I'm pretty excited about it, ready to kick the virus once and for all. I know that I'll need your unconditional love and patience when I bitch about being tired. I'll need your emotional support and I know that you'll be there for me. Every time you make me laugh or inspire me with your music and your art or share your favorite recipes, you keep me going. Your triumphs, your failures, your loves and your losses, that's the good stuff that nourishes me. Thank you for that, my friends. I love you, and I love your stories, every one of them. And thanks for being interested in mine. It's a privilege to share with you.

xoxoxxo - Laura

Liver & Onions

2009-10-28T11:15:00.004-05:00

Sometimes we all need a good cry. It can be such a relief when those tears start flowing and there's no way to control them. It's like a sprinkling of rain watering the garden of the spirit... even when it comes from a gloomy storm cloud. Don't know about you, but my spirit is always thirsty and takes it in - which proves to me that I'm alive. Of course, I'm not really fond of the uncontrollable sobbing that signals a deep break in the flow of that spirit. That's just painful, and in my book no pain means NO PAIN!

Last month I received a letter from my donor's family, albeit anonymously. We're able to contact each other through an intermediary and I'd thought about writing for months but had trouble finding the words. Most of you who know me would find that surprising, right? But what HASN'T been surprising about this past year? Anyway, when I opened that letter and started to read, the tears flowed like the Mississippi. I read over and over again before I was able to take in the information and process it. I had just found out my donor's name from her adult daughter.

Now it's always been clear to me that I was pretty damn fortunate to receive that liver when I did. Often I thought about how difficult that time had to have been for the family who lost their loved one. Now I was actually hearing about K from someone who loved her and missed her. And what a lovely woman she was. Somewhat older than me, full of life and love, still a daughter, and a mother, and a grandmother when she died rather suddenly. I'm reluctant to divulge more details than that, because this letter felt just about as personal as the act of making love.

K had indicated on her driver's license that she was an organ donor. This gave her family no doubt at all as to her intentions, which made their loss somewhat easier to bear. Her daughter tells me that in the first months after their loss, they were actually comforted to know that somewhere, someone was benefiting from their mother's gift. She also told me that when it recently came time to renew her license, she listed herself as an organ donor.

This has been a pretty intense couple of years, friends. No matter how well we think we know ourselves, there's always more to be revealed (sorry to lift a slogan - but it's proven true.) Despite my best intentions, blogging about my recovery has fallen far short of my own expectations. That's partly a good thing - I've been pretty busy living my new life.

Now I can laugh and joke and carry on more than I have in years, for real. In fact, some of you saw me in the hospital and know that I'm basically a big old ham who loves attention. Even during the most dire crisis I could crack a few jokes, right? Even when coming out of a coma... Q: "Do you know your name? What year is it? Who's the President?" A: "groan... it's still the Idiot, isn't it? But not for long!" Now you know that I know that there's a part of me that's still deeply wounded by this whole experience. And it's a little frightening for me to let myself be too vulnerable. I have no idea how long that healing process will take, but at least for today I'm in no particular hurry. And I don't have a snappy ending either, y'all.

peace to all,
Laura

Catch Up (plus burger, mustard, and fries)

2009-08-24T18:08:00.004-05:00

Hello friends,

and thanks for being there. I've taken most of the summer off from thinking OR writing about my health, at least here. I haven't been absent, just visiting another planet. After some initial resistance to the Facebook phenomena I dove in, friending like a maniac. I even started a farm, joined the mafia, and toyed with being a pirate. So far I've been able to resist vampire wars - too much blood, sorry. But never say never.

Now I return to the blog. I'm hoping that it'll get me back into a writer-friendly, reader-challenging frame of mind.

Here's a quick update of what I've been up to since June, and my move:

I did a lot of purging of old stuff, got rid of junk in the attic, and felt relieved to have it done. Got settled into my new place. Had a nice long visit and then a yard sale with Kim - then said goodbye as she headed east for her new life.

I spent a lot of time finding the right roommate, but finally did - and she moves in soon. In the meantime I've enjoyed the freedom of living alone, answering to no one, and being a slob. Last month there was a super-awesome visit with Zoe, including a couple of great shows. Of course I was sad when she left, but we'll see each other again soon.

I've had a million and five ideas for what to do next - with my life, with work, with anything and everything. Occasionally I get anxious. But so far I've been guided to the next thing, and the next. So I continue to have faith that it's all going to be just fine.

And my health is good. Yes, there are still medication changes and it's annoying. It affects my sleep and my energy and sometimes my mood. So I do have the occasional sad day, or bad day. But when I remember where I was a year ago... my gratitude returns. I'm alive and kicking, yee-haw!

Now I'm off to have a cheese-burger with fries and a chocolate malt.

Laura

Ch...Ch...Ch...Changes

2009-05-13T13:45:00.002-05:00

Hey y'all, this has been a really busy month so far, leading up to the 6 month anniversary of my liver transplant. The big day is May 18th, which is just 2 days before my birthday, so there will be a lot for me to celebrate this year. That's even more true now that I've had all of the tests and procedures that are done to make sure that everything is continuing to work the way it should.

There's also been the joy of finally taking care of a few things that I haven't been able to do since way before the transplant. The fun part was finding a groovy new pair of glasses after a thorough eye exam. The not so fun part was a root canal, although I must say that my dentist has been incredible. Everyone continues to impress me all over Fairview Hospital. They've just opened a brand-new dental clinic at the Riverside location that provides special care for individuals who have complex medical issues, including transplant recipients. It really makes life a lot easier for those of us who've grown weary explaining the same basic information over and over.

There's a whole lot more going on, but I'll save some for later. For now I'll just mention that the rest of this month will continue to be busy. I'm packing up to move into the downstairs apartment of this big house where I reside. It'll be an interesting change to look out the window and not look down on everyone who walks by. Is that a metaphor for something?

peace and love,

Laura

Spring Has Sprung

2009-04-29T22:41:00.003-05:00

Well... first of all, a big shout out to Giovani for saying that he misses my posts. (And by the way, my friend - your English is far superior to my Portuguese!)

At least there is a good reason for my absence. This month has been SO busy that I didn't realize how many days had gone by. In my last update I was focusing on the fractures in my vertebrae. I'm not taking any pain meds now, and it feels like it's getting better. Tomorrow I'll have more x-rays and talk to the neurosurgeon to see if there is progress with the healing.

So here's why I've been so busy: I am getting near the six month anniversary of my transplant and now there are lots of tests to check the liver. And of course I've also started therapy to get my head a bit looser. Yes, I worry too much.

One problem with immuno-suppressant medications is that they can cause transplant patients to become diabetic. Last week I had blood tests for diabetes; thankfully the tests were negative, so it's one less thing to worry about. Whew.

And so far the liver seems to be doing fine. I had an ultrasound to see my organs and it looked good. I've also had another biopsy but I won't know the results until Friday. Gosh. I'm getting tired just thinking about it all, so I guess that's why I've taken some time off from writing. There's also the fact that Minnesota is quite beautiful in the spring. Since the only exercise that's safe for me right now is walking, I've been taking lots of walks (except for rainy days.)

This weekend I'll try to walk all the way around my favorite lake. Wish me luck!

xoxo

Laura

I'm a Lazy Sod

2009-04-05T22:52:00.003-05:00

I had a great weekend, with good friends, good food, (mostly) good weather, and good laughs. It was pointed out to me, though, that I haven't been writing here as often as I'd planned. I guess I'm more motivated to write when I'm down than when I'm up. Do other writers ever experience that? ;)

I guess I could give you some dining reviews (Culver's, mmm) or tell you all about Ms. Cho and her trannie warm-up act. But that's not really the focus of this particular blog... yet. So let me bring y'all up to date on my latest project:

"Bones"

Last week I saw the neuro-surgeon who had seen me in the hospital. I had been on morphine at the time so she wanted to make sure I remembered our previous conversation! I had actually remembered it so well that I checked out the Mayo Clinic website before seeing her again and I had lots of questions. (That site is an excellent resource, by the way.)

Long story short, since I'm in the 'high risk' category for loss of bone mass, I'm going to be starting on a different med called Pamidronate, which replaces the Fosamex. They've had good results with this for transplant patients. Starting Tuesday I'll be going into the Transplant Clinic for an IV infusion (a four-hour procedure) once every three months, starting Tuesday.

I also discovered that there's an even newer drug that doesn't just slow the bone loss, it actually builds bone mass. Unfortunately there isn't quite the long track record yet as there is with Pamidronate. But I have a good feeling about at least having choices.

We also further discussed the vertebroplasty, which is starting to look like a good option. Basically, I'm optimistic about one of these being successful. And just when the girls were all ready to come over & pimp out my faux torso!

Hopefully in the next few days I'll post my inside look at ambulance rides, EMT's and hot x-ray techs. I guarantee it will rival the series finale of "ER."

peace,

Laura

More Breaking News

2009-03-23T12:34:00.002-05:00

Hi all,

I'm really worn out and not much in the mood for writing or reading or sitting or standing or talking or... actually, walking does help a bit. And I do want to keep this site up to date. Besides which, I am actually finding it therapeutic to write about these events as they occur. It seems to help my memory stay awake.

So here's a quick update on my condition:

For the second time in two weeks, I suffered a fracture (this time one of my lower vertebrae) while doing not much more than bending. I was taken to Fairview hospital late last Monday night and stayed until the pain was "under control" Wednesday evening.

The specialists say that I am at risk for more "stress fractures" like this to occur. The main culprit is lack of bone mass. Muscle weakness may also play a factor. After all, I was in hospital beds for most of the past several months. So exercise is important, but also dangerous. How's that for a conundrum?

I have been fitted for a special brace, which I am wearing now. It's made from rigid plastic from a plaster cast of my torso. Comfy! This is meant to prevent certain kinds of movement that might compromise my other vertebrae and ribs. I'm also taking Calcitonin now in addition to Fosamex. Other people have had great results with Fosamex improving their bone density, but that's really all I know about it at this point. In a few weeks I'll have another scan to see if the fractures are healing. Then they'll consider doing a "plasty" procedure: the fractures are injected with a type of cement to strengthen the bones. Unfortunately there is a risk (there usually is!) of making the upper vertebrae weaken and become more susceptible to fracture as well.

By the way, the hospital staff remembered me and were great, as they usually are. But I still never want to see them again. EVER!

peace,

Laura

Breaking News

2009-03-19T20:25:00.002-05:00

Hi - I have to interrupt the next installment of the description of my last injury with the news of another injury. Again, a stress fracture. Again, the only apparent cause a sudden movement or bending or turning the wrong way. So the next installment will include more, more, more!

Love y'all, LK

Going Up The Down Escalator pt.1

2009-03-14T22:05:00.005-05:00

You may wonder what keeps transplant girl busy all day. Does she spend most of her time reclining on a Barcalounger, sipping a smoothie, idly perusing the latest issue of Bust? Or does Lady Laura of the Lucky Liver luxuriate in a foamy tub? (Too many alliterations? I'm just giving the gray matter a workout.)

Which reminds me, working out hasn't fit into the daily routine these past 2 weeks. I'm supposed to stretch my scrawny muscles to make up for months of being tied to the hospital bed. (Seriously, I WAS tied to the bed for awhile... don't ask, okay? And if you know, don't tell me yet, I'm not quite ready. And don't mention the word encephalopathy please. EVER.

Changing the subject, the Medic Alert package finally arrived. Gosh, that online shopping really pays off when the postman knocks. It's like Christmas, especially when the gift is a lovely charm bracelet. Mine's lavender, by the way.

Anyway, I HAD been making excellent progress with the stretching until one morning last week. Woke up, leaned over to pick up my slippers, and... crack! No, not the kind that's smoked, and not the sound your breakfast cereal makes in between the snap and the pop. It was the sound of a sad little rib breaking free from it's home. A scary intake of breath and... owww... Pretty lucky for me that the cel phone was on the nightstand, not in the charger where it usually sleeps. Because I...COULD... NOT... MOVE... Thinking that I might have punctured a lung... speed dialing... friend calls 911... says they're on the way... keep trying to breathe... hear the ambulance... firemen yelling, banging the door... someone says "Get the Axe!"... (yeah, that's what they do) and a burst of adrenaline gets me off the bed, staggering into the arms of a paramedic as he says, "Lady, you just saved yourself a door."

Well, that's a relief.

Stay tuned for the next installment...

peace out,

Laura

FREAKY FRIDAY

2009-03-13T12:39:00.002-05:00

Just a quick note today for those of you who follow this dramady.

I REALLY DO want to keep this spot updated but the past 2 weeks have given a whole new meaning to the word "aaarrrggghhh"!

I'll post more later, but for now just allow yourself to be flummoxed by the fact that it is indeed possible to dislocate a rib while reaching for your slippers. Seriously.

more to be revealed...

I Have Not Been Playing Hockey, or Hookie

2009-02-28T12:40:00.003-06:00

As anyone can see, I have not posted here for several weeks. After the benefit, there were visits from family and getting prepared to be home on my own.

I'm still receiving A LOT of help from friends, but I am starting to feel a bit overwhelmed by the amount of work involved in my recovery. Managing medications alone takes up a lot of time. I'll soon start to attend counseling sessions to help me reconstruct events of the past many months. Thankfully Kim will be reading my medical records and translating them for me - I'm just not ready to do it myself.

At some point we may even post photos from the many hospital stays. I've seen similar photos on other websites, and it's been very helpful, making it more real for me. There's just so much that I don't remember at all. That's not necessarily a bad thing, I guess. Apparently there were times when it looked like I might not make it. Not sure I'm ready to think about that.

Again, thanks to everyone who has followed this crazy trip. I hope to thank you all personally when time allows.

xoxo

Laura

Season of Firsts?

2009-01-29T18:11:00.003-06:00

It's very exciting to report that I have gotten excellent 'grades' from the visiting nurse/therapists and that I'll be able to go on MORE and LONGER field trips. In fact my escort extraordinaire Kim will be making her first visit to Red Wing MN when we go to see Margaret Cho in April! Yay! Super duper tenth row tickets, baby. "Beautiful" is the name of Ms. Cho's new performance.

Of slightly more mundane excitement is the fact that I was able to get in & out of the shower for the very first time since leaving the hospital rehab. I will never again take for granted the simple things like hot water & shampoo. Seriously. Some of you may know what I mean.

I'd like to write more but I think it's time for dinner!

xo - Laura

OOPS!

2009-01-23T22:53:00.002-06:00

and the winners are...

ALT Bike & Board Tune-up $65 value Steve Faust
Brian Graham Salon Gift Certificate #1 Adela Peskorz
Brian Graham Salon Gift Certificate #2 Laurel Vasileradis
Bryant Lake Bowl Gift Certificate Steve Rood
Café Maude Gift Certificate #1 Liberty Lucken
Café Maude Gift Certificate #2 Ronald Hewitt
Center for Happiness Class Pass Adam Hall
Cheapo Gift Certificate $50 Elaine Wedel
Chindian Gift Certificate #1 Pat Woods
Chindian Gift Certificate #2 Liberty Lucken
Ecopolitan Gift Certificate Nichole Weiner
Electric Fetus Gift Certificate #1 Caroline Kelly
“ “ Gift Certificate #2 Jen Sandquist
“ “ Gift Certificate #3 Kathy Daugherty
“ “ Gift Certificate #4 Jen Sandquist
“ “ Prize Pack #1 John Pervola
“ “ Prize Pack #2 Richard Ellioff
Fontana Distribution Kissology Box Set Mary DuCharme
Galactic Pizza Gift Certificate Robin Rife
Minnesota Twins Tickets Pat Woods
Mr. Chan Presents Tickets Nevanka G.
Moxie Salon Prize Pack #1/GC Sage Holben
Moxie Salon Prixe Pack #2/GC Randy Nordquist
Moxie Salon Prixe Pack #3/GC Cyn Collins
Moxie Salon Prixe Pack #4/GC Paul Larson
Namaste Gift Certificate #1 Jon Copeland
Namaste Gift Certificate #2 Amy Myrbo
Nash Frame Gift Certificate Richard Ellioff
Nick & Eddie Gift Certificate #1 Jeremy Fisher
Nick & Eddie Gift Certificate #2 Beth Wakefield
Purity Facial Gift Certificate Adam Hall
Red Stag Gift Certificate Eric Neese
Revolver USA Prize Pack #1 Ronald Hewitt
Revolver USA Prize Pack #2 Jody Wahl
Revolver USA Prize Pack #3 Helen T.
Roadrunner Records Gift Certificate John Ziegler
Robot Love Prize Pack Max Duckler
Robot Love Gift Certificate Jill Jacobson
Scott Seekins Print “Have you seen …” Tim Holmes
Scott Seekins Print “Trashy Jokes” Nichole Neuman
Scott Seekins Print “… Brittany” Kate Maillette
Sebastian Joe’s Gift Certificate John Pervola
Smitten Kitten Prize Pack Heidi Kalweit
Spot Spa Boutique Gift Certificate #1 Jennifer DeJonghe
Spot Spa Boutique Gift Certificate #2 Lissa Kleven
Spot Spa Boutique Gift Certificate #3 Max Duckler
Spot Spa Boutique Gift Certificate #4 Holly Besinger
Spot Spa Boutique Gift Certificate #5 Jess Matelski
Spot Spa Boutique Gift Certificate #6 Jim Bradt
Walker Art Center Prize Pack Elaine Wedel
Warner Music Group Prize Pack #1 Pat Woods
Warner Music Group Prize Pack #2 “ “

GRAND PRIZE! Zune Music Player #1 Randy Nordquist
GRAND PRIZE! Zune Music Player #2 David Barton

SPECIAL BONUS1 Bush Tetras Gift Pack #1 Nell Ruckler
SPECIAL BONUS1 Bush Tetras Gift Pack #2 Jon Wurm
SPECIAL BONUS1 Bush Tetras Gift Pack #3 Tiffany Durkee
SPECIAL BONUS1 Bush Tetras Gift Pack #4 Jessica Wiger
SPECIAL BONUS1 Bush Tetras Gift Pack #5 Dave Campbell
SPECIAL BONUS! Poster/Laura’s Collection Jon Copeland
SPECIAL BONUS1 Poster/Laura’s Collection Tommy (on Ticonderoga)

Better Late Than Never!

2009-01-23T22:30:00.002-06:00

Hello again. So... somewhere between having a visiting nurse, a visiting therapist, two visiting furnace repair people, meds, one visiting pastry-laden Aureliano, meals, naps, more meals, more meds, visiting humor-laden Sarah H and Liberty L, and a late-night calorie-laden snack... I did finish organizing the list of raffle-ticket winners! Yay! Sorry it took so long, folks. We struggled with reading the names scrawled on those tiny ticket stubs. Winners are posted here, but of course will also be notified personally by telephone. If we cannot reach you immediately we will mail your prize sometime during the next week. Thanks again to all of you for participating.

xo - Laura

Riff Raffle

2009-01-21T13:23:00.002-06:00

Yes it was a great weekend but it's Wednesday and I'm still feeling it in my bones. This morning the visiting nurse (physical therapy) taught me some gentle stretches for my back. I keep trying to remind myself that I've only been home from hospital/phys. rehab for a little over a week! There is a long slow road ahead. Of course I'm really anxious to get back to my old self, but it will be a long and slow process. Thanks again to all of you for your patience and understanding.

BTW, the raffle did take place on Sunday afternoon, a bit later than planned, but oh well. Everyone is tired and stressed out from putting on the event and I love/thank them all. Raffle prize winners will indeed be notified soon, hopefully by the end of the week. We have to make a lot of phone calls! I did also start to type up a list of winners, but my capacity is limited so that list is not yet complete. Maybe tonight or tomorrow. Thanks for your patience. I'm so lucky to have such a tremendous support system. This whole plan was Vicky's idea and she is taking a much needed day or two to recharge batteries. Other friends are pitching in to help. I'm not going to mention them all by name right now, they know who they are.

xoxo - Laura

Wow! What a Weekend

2009-01-19T14:07:00.003-06:00

Only home from the hospital a week, but with Dr’s permission I did leave the house on Saturday and Sunday.
Having my former band mates (Bush Tetras) fly in to the mini apple to support me was a real homecoming. We hadn’t seen each in years (yes, I love mpls and have no desire to return to nyc!) so this visit boosted my energy. I probably overdid it, going out to the benefit concert for 3 hrs on Saturday night and then meeting everyone for brunch at Nick & Eddie on Sunday: Wow! Who needs sex drugs and rock and roll when you have Jessica’s butterscotch pudding?
While Doug drove the band off to the airport, we threw raffle tickets into a big vase and picked out some winners. It seems as though quite a few people bought large quantities of tickets, and when you see the list of winners you’ll notice that a few got very lucky. On the flip side, I’m sure there are also those that missed out, the law of averages being whatever – but a huge thank you to those of you who participated. The proceeds have gone into the fund that was created for me to help with all my expenses during the crucial first year post-transplant.
I do want to thank all of you individually as well for your contributions and your positive energy, but there has been so much response that it may take me several months to get those thank-yous done. Please know that I’m grateful for your support & encouragement.
XOXO – Laura
P.S. List of raffle prize winners will follow soon, I promise!

Shout Out to My Angels

2009-01-17T12:38:00.002-06:00

I've just started to read the comments on this blog. You may not know this, but soon after it was created (with help from some angels) I became quite sick and unable to participate. The news has been spread by other angels, and angels have been at my side for the past six months of this long journey.
Now I find myself at a loss for words, completely awed by all the love and good wishes coming my way. I so want to write each of you personally and I promise to do that some time in the coming months. There are hundreds of people who have contributed or sent greetings. Some are long lost friends, others may have seen the band back in the day, but rest assured that each and every one of you have contributed to raising my spirits and given me the will to keep fighting. Bless you all.
xoxo
Laura

Extra! Extra!

2009-01-16T10:59:00.002-06:00

An excellent piece written by Jim Walsh in the Minneapolis Star-Trib today hyping the show and Laura. Leave it to Laura to be bleeped out in a newspaper article...

BEWARE OF OLD PUNKS WITH CANES

2009-01-14T16:14:00.002-06:00

I'm home! The recent past is a blur. My friends have been telling me what happened over the past 4 or 5 months. It's what I imagine it must be like to wake up from a coma.
I'll write more later (it's supposed to be therapeutic) but for now just a shout out to all of my beautiful friends and supporters. Your good wishes and prayers did get through to me.
Much love,
Laura
ps - For now I have Dr's permission to attend the benefit! If you are on the dance floor beware, I have a weapon at my disposal.

Minneapolis Benefit for Laura Kennedy Update

2009-01-07T09:52:00.002-06:00

All---

Hard to believe that nearly a month has passed since my last post. Some news regarding the Minneapolis Benefit for Laura on January 17th...David Thomas from Pere Ubu will be joining the festivities. My hope is that he will recreating birdcalls and doing his most modern dance. Of course there is a Bush Tetras/Pere Ubu connection as Laura and Cynthia were deemed the "Nerve Gas Dancers" many years ago. Hopefully their story will be told the night of the benefit.

Laura is being released from the transitional care facility on Friday (!) and as we prepare for her return home I can hardly believe the events of the last 2 months. To everyone who has offered help here in the Twin Cities and to those of you who have sent words of encouragement and financial support we cannot thank-you enough.

BUSH TETRAS*DAVID THOMAS*SUICIDE COMMANDOS*SKOAL KODIAK

NICK & EDDIE
JANUARY 17TH @ 9:00
1612 Harmon Place
612-486-5800

Tickets are available on-line at: www.first-avenue.com

and at Nick & Eddie, Treehouse Records, The Electric Fetus and Eclipse Records.

See you at the show...it should be quite a night.

respect,

vicky

New Year, New Challenges

2009-01-03T09:58:00.002-06:00

Hello and a huge thank you to all who have been so supportive with thoughts, prayers, and donations. I promise that once I am back home and better recovered, I will respond to your cards, letters, and emails.

So yes, I have gotten a liver through a very sudden sequence of events. Getter sicker and potentially losing the chance of a live donor (part of a liver) I was again admitted to the hospital where apparently I had a bad fall. Not long after my position on the transplant list went higher, and suddenly a liver was available. Surgery was done quickly, though I was pretty out of touch before, during and after.
Chances for recovery are better, though, with the whole (deceased) liver option.

Goddess blessings to all of you who have healthy organs and note youself willing to be an organ donor. You have no idea how it can change so many lives.

The work seems to be ongoing, though. I'm receiving an education here from the Transplant Clinic staff. The patients who make the best recovery are the ones who are able to manage large amounts of information. I've also had to cempletely adjust my thinking. I've spent years looking after my health and finding ways to boost my immune system. Now I've got to be on medicantions that suppress my immune functions, so the new liver won't be rejected. After a period of time feeling overwhelmed, I'm trying to embrace this opportunity, take whatever time I have left, and challenge myself to visit some new territories.

Blessings to you all.

Laura

Minneapolis Benefit for Laura Kennedy

2008-12-13T17:00:00.000-06:00

All---

NICK & EDDIE
1612 HARMON PLACE
MINNEAPOLIS, MN 55405
612-486-5800
SATURDAY JANUARY 17TH
DOORS @ 9:00

*BUSH TETRAS*SUICIDE COMMANDOS*SKOAL KODIAK

ADVANCE TICKETS ($25) ARE ON SALE NOW AT THE FOLLOWING:

NICK & EDDIE, TREEHOUSE RECORDS, THE ELECTRIC FETUS, ECLIPSE RECORDS AND ON-LINE AT:

www.first-avenue.com

Laura turned a small corner within the last few days, and there is a good possibility that she will be transferred to a rehabilitation facility sometime next week. Our hope is that she will be well enough to attend the show. Keep sending those
positive thoughts and spread the word. We've barely started and tickets are selling fast. Hard to say if there will be availability at the door ($35 day of show). if you are interested in selling raffle tickets please let me know. We'll have close to 100 prizes when all is said and done.

big respect,

vicky

Version: thanks and praises

2008-12-07T10:34:00.000-06:00

All---

Laura was moved from the ICU this past Tuesday and it appears that the doctors are finally getting a handle on her drug "cocktail." Although she is still experiencing some mental confusion, last night she was responding to questions and more alert than in previous days.

Her new liver is working overtime to heal her body and the hope is that her mind will catch up in good time. For locals she is able to receive visitors if only for short periods. But mental stimulation is a good thing right now, so if you have any questions please feel free to contact either Kim or myself if you would like to stop by to see her.

Today our friends Mary & Adam will host a thanksgiving dinner for her close circle here in the Twin Cities. We have so much to be grateful for...an understatement really.

Benefit plans are falling into place rapidly and I'll update very soon but tickets can be purchased at:

www.first-avenue.com

Keep spreading the word on behalf of Laura and thanks to everyone for your on-going interest and support.

respect,

vicky

Frustration

2008-11-30T22:16:00.001-06:00

All---

Laura was readmitted to the ICU yesterday. She is sedated and back on a respirator to hopefully stabilize a slide which began on Thursday. Again her condition is incredibly fragile/weak. I am hoping to speak to the doctors tomorrow to get a better handle on the situation.

I saw a "glimpse" of Laura just a few days ago which makes this even more difficult to accept. Yes there will be peaks and valleys over the coming months, but please continue to keep her in your thoughts and meditations. I told her tonight that there are so many people sending positive energy, and I feel sure that by all of us focusing on helping her heal that she will pull from deep down and get over this hurdle.

More to come very soon.

respect,

vicky

Thanksgiving Realized

2008-11-27T15:18:00.001-06:00

Everyone---

Once again I find myself at a loss for words. Reflecting on the last few weeks it seemed that Laura was faced with insurmountable odds of having a transplant come through. Yet it happened, and to the family that made the sacrifice so that she might have a 2nd chance saying thank-you on this day especially hardly seems enough.

Laura is still very weak, and we are looking at a very long recovery. But her new liver is working and her wounds healing. The pain medication tends to send her to the moon and then back for a brief check-in. She is catching up from a struggle that began in July and it will take time. It is still about baby steps for awhile but she is moving in the right direction.

All the best to so many that have kept Laura close in thought and to her posse (her word!) of friends here in Minneapolis that have done so much.

And yes the January 17th Benefit Big News...The Suicide Commandos have committed their support and will make a rare appearance along with the Bush Tetras and Skoal Kodiac. What a celebration it will be. Nick & Eddie's is the venue and please continue to check back for updates.

respect,

vicky

The Prettiest Star-Laura Kennedy

2008-11-24T18:34:00.000-06:00

Everyone---

Spent the afternoon with Laura today, and she was laughing at me for fretting over various paperwork that I am attempting to fill out for her. Social Security and Hennepin County, good times.

She is still recoving from nearly 6 days of the invasive nature/ramifications of being hooked up to a respirator, and the havoc it reaked on her throat. A Speech Therapist is working with her to help regain strength just so that she can swallow again; we are hoping that tomorrow she might be rewarded with a sip or two of her favorite apple/carrot juice. Everything is still via IV.

So extremely weak yes but healing slowly. Everyday brings a slight improvement. Her speaking voice is just above a whisper right now and we are probably looking at another 2-3 days before she will be transferred out of Intensive Care.

But Laura's sense of humor remains intact. There is a show of amusement towards the various doctors and staff that are constantly in and out to check on her.

Bright Moments! Laura Kennedy Benefit Information

2008-11-20T10:43:00.000-06:00

It is now nearly 2 days since Laura received her new liver; she is stable and still emerging from the anesthesia. Laura has no idea that this happened as she has been sedated since Sunday. Hard to even comprehend what will follow as emotions are pretty difficult to contain right now.

A meeting was held last night and a January 17th date confirmed at Nick & Eddie's for the Minneapolis Benefit show, which will surely prove to be a celebration to remember. On December 19th an LK Happy Hour from 5:00 until whenever will take place, again at Nick & Eddie's to raise awareness and get the excitement going for the show featuring the Bush Tetras and Skoal Kodiac.

More details to come. Again thanks to everyone for the overwhelming support, both with donations and words of encouragement. Please continue to keep Laura in your thoughts/meditations as she faces a lengthy recovery...

respect,

vicky

speechless

2008-11-18T23:57:00.001-06:00

All of Laura's friends--

I am writing this from the waiting room of the U of M surgery floor.

We have just been notified that Laura has received a new liver. They are wrapping her up now. The surgery was supposed to take anywhere from six to twelve hours, and the it barely took six. I'm not a doctor, but you couldn't ask for a smoother ride.

Thank you for all your thoughts and prayers. We are not out of the woods yet, but this is nothing short of a miracle.

--Adam

Status Update

2008-11-05T10:27:00.000-06:00

After a week which can very accurately be called a roller coaster, Laura is now resting comfortably at a care facility connected to her hospital. Her condition is stable for the time being, and she has been moved up near the top of the list for a liver transplant.

The outpouring of support--financial and otherwise--has continued unabated. We did not know what to expect when we set up this fund, this blog, when first we sent out those first calls for help in the NYC and Twin Cities music scenes. We are incredibly gratified to discover that Laura is just as important to you all as she is to us and that you all are rallying behind her. Reading some of the notes of support she's received, they seem more like thank-you notes: "Thank you, Laura, for the music you've helped create," "Thank you, Laura, for being such a good friend," "Thank you, Laura, for the inspiration of your example." Not direct quotes, but paraphrases of letters and emails that have helped Laura weather this very trying time. Seeing her and the impact your letters have on her as she reads them brings smiles to all of our faces and makes us appreciate her all the more.

Please keep sending whatever you can--money, compassion, prayers. They are giving Laura the will she needs to continue this fight.

Thank you.

--Adam

Mpls Concert date change, housekeeping, and thanks

2008-10-14T12:46:00.005-05:00

Many, many heartfelt thanks to everyone who has donated through the PayPal link. The outpouring has been overwhelming. We are all beside ourselves with gratitude. Keep it coming--every little bit helps.

Please note that the Minneapolis concert is being rescheduled. A new date will be posted on this blog shortly.

If you want regular status updates on Laura's condition, the concert, or things Laura in general, we've added a subscribe link on the left-hand side of the blog. Now that we're more organized (and are getting better at deciphering Google's word verification when we post), expect more frequent contributions from me and all of Laura's circle of support.

Again, thank you for all you've done so far. Please keep Laura in your hearts and minds in the coming months.

--Adam

Welcome!

2008-09-24T15:55:00.009-05:00

Dear Friends and Concerned Folks,

My friends in Minneapolis and I have set up this blog to help keep you informed of what is going on with my journey towards a liver transplant, communicate electronically with me, and to enable people to help out if they can. And we need your help, so please consider making a donation, big or small. This is a work in progress.

We are planning a benefit concert for ~~Saturday November 8th~~ in Minneapolis, featuring the Bush Tetras and others TBA. (The Minneapolis benefit concert is being rescheduled. Details to come shortly...)

The venue will be announced shortly. More information as it becomes available.