Living in trying times with all this hanging over your head....

Living with kidney failure is a hard thing.  I'm not going to lie; I'm also not going to lie and say that it doesn't lead to some kind of depression, either.  I'd venture to say that most people out there with ESRD (and on dialysis) suffer from some kind of depression - I'd venture to say that a lot of people out there suffer from crippling depression.

I know I do - or I can have bouts of it, for sure.  It's hard to keep your head above water about life when you feel so awful all the time.  The mental weight of feeling "bad" can really bring you down, even when other things in your life are great.  In my case, my life outside of my disease is great - I've a great wife, family, hobbies and job opportunities.  I've got a lot to be thankful for, especially in these trying times.   But the sense of futility about my condition, and the level of exhaustion, frustration and devestation I feel from day to day will just put me in the crapper. 

You just have to do the best you can - and really make efforts to keep your head above water.  I think a little amount of depression about the condition is normal - and good!  You'd have to be inhuman to not be sad or upset about not having kidney function and feeling bad all the time.  There's just nothing good about that.  But I don't think sitting around and having a giant pity party is a good thing, either.  I know some patients who just wallow in the misery, and succumb to the darkness totally - cursing the disease, cursing everyone around them for not understanding the disease, cursing the doctors who try to treat them, cursing the nurses who care for them.   I'm glad I'm not like that - I don't know how anyone considers that living, let alone surviving.  They probably don't, which is why they're so angry and sad.  The truth is, though, you're still in charge of how you live, even if everything isn't working right, and everything sucks. 

So, yeah, I know I'm going to have days, hell I'll have weeks, where I'm a grumpy gus and kind of a downer.  But I look at the big picture, and I think that overall, I handle it all pretty well.  I've got hope for the future, and that's what keeps me going.  My family is amazingly supportive, and I'm lucky as hell for that.

~Steve

Finding a Center

I'm currently enrolled in the Transplant Program at University Hospital in the Upstate Medical Center here in Syracuse, NY.   I live in Syracuse, and all of my family does too.  So, I thought it was important to get enrolled in a transplant program here, in my hometown. 


However, after almost four years on the waiting list, I've been looking into going to a larger, out of state center.  My wife has been gung-ho about the idea, researching all kinds of transplant centers all over the country.  We've been mostly looking at places on the East Coast, so we can stay relatively close to home - but there's some centers out there doing amazing work.  And I'm excited about the prospect of working with one of them - my chances of getting a transplant are much greater at some of these places, and I've been waiting so long - too long, I feel, and I really, really want to try another transplant so I can move forward with my life.

Traveling for health care is a scary prospect, though.  So much to consider - travel expenses, living in another city for a short period of time - my wife has a career here in town, all our family is here.  But people do this all the time - I'm excited, because I think I can put those fears under a blanket, finally, and go for it.  I've got this fire burning in my soul - a passion for life that just can't be quenched, and even though it's severely stifled by the dialysis, I'm still burning to be a better person, a healthier person.... and it's that passion for life that makes one face their fears, put them aside, and do what's right by them.  I haven't always been the best at facing up to what scares me - an ostrich with his head in the sand, perhaps.  But I've gotten better because of my illness - I've learned how to face what I once thought was the unfaceable.  But, man, I couldn't do this alone. 

People often attribute "strength" to their mate in times of trouble - and in the past, I admit the cynical part of me would scoff at this at times.  I just didn't believe that some people were sincere about it.  I felt like "I owe it all to my love...." was bandied about, like a bottle of ketchup at a Fourth of July Barbecue.... but I can honestly say, for me, now - that I don't think I'd have to courage to try and leave home for treatment if I didn't have Jordan.   I'm so unbelievably lucky - having someone not only stand by you during something as maddening as all this, but to be encouraging, supportive and loving... that doesn't come around often enough in this life.  I'm so glad she clung to me when she found me, and I'm glad I bonded to her.  She helps me find my center.... and now, heh, she's helping me find A center....

So, we're still looking now, and trying to decide - but I'm excited about the prospect of working with some other doctors and centers - many of them are very excited to work with a patient like me.  Which makes you feel good, because as a chronic patient, sometimes you feel more like you're a number and somebody's meal ticket than a sick person.

So, here's to the holidays - and the hope and joy that come with them.  I know I'm filled with a new hope this season, and here's to hoping that your holidays are filled with, well, at least good tidings.  I know sometimes that third helping of mashed potatoes is never the "awesome" idea it seemed to be when you scooped them.


~Steve

Wondering who I'll be....

One way they measure kidney function is your output of Creatinine.  In a nutshell, creatinine is a waste product produced by your muscles from any activity.  It's filtered out through your kidneys - it's one of the wastes that you produce and pee out.  So, when you're in End Stage Renal Failure, you don't pee it out and it builds up in your system.  The typical human ranges for serum creatinine are 0.5 to 1.0 mg/dL  for women and 0.7 to 1.2 mg/dL for men. While a baseline serum creatinine of 2.0 mg/dL may indicate normal kidney function in a male body builder, a serum creatinine of 1.2 mg/dL can indicate several renal impairement in an elderly woman. 

So, I often read stories on the net, at other transplant blogs/forums/sites, where recent transplant recipients talk about having a creatinine of 1.1 and how great they feel.  I get a bit wistful; my creatine was around there with my first transplant, and I remember feeling great.  After the procedure that damaged my transplant, my creatine in my damaged kidney hovered between 3 and 3.5.  Not great, but enough to keep me off dialysis.  They say that ever number you go up with creatinine is 100x worse than the last.  (4 is 100 times worse than 3, etc.)  Basically, what one person would clear out of their system in an hour of filtration at 1.1, I'd take 3 to clear out at three.  So, I was still a little rough around the edges, suffering from kidney impairment, but at least I wasn't on dialysis.

My creatinine, normally, has been hovering between 11-13 since I've been on dialysis.  Everyday.  I live with an 11 creatinine.  It's no wonder I feel like crap most of the time.  I dream of the day I have a 1.1 creatinine.  To not feel so tired and rundown....ah.... it's a dream.  I dream of my transplant. 

I think about what kind of person I'd be with a 1.1 creatinine..... how much stuff I'd get done!  I get upset, because I feel like I don't get much done... but I look back on my year, and all I've done despite being on dialysis and having a creatinine level of 11.....
    -  I shot a commercial
    -  I produced a video for the VA Nurses Week
    -  I performed with my band at the Taste of Syracuse
    -  I wrote, directed, shot, and edited a short movie with the help of my family
    -  I managed to get away to camp a couple of times in the summer
    -  I helped my wife remodel the kitchen.

I mean, these are just a few great things I got to do this year.  I can only imagine.... and hope, that I'm still some kind of go-getter when I'm feeling better.

So, I'm gonna keep dreaming of that transplant, and that creatinine level of 1.1..... it seems like such a sweet dream.  Oh, and don't worry friends, I'm still dreaming of peeing all over the great white northern woods when I get my new kidney.  Don't worry about that dream!


~Steve

Shoving a camera up my rear.... or, "My Colonoscopy, Part II".

So, last week, I had another colonoscopy.

I've been having digestive and elimination troubles ever since I went back on dialysis; the first time I was on dialysis in 2003, I had these problems too - but after I got a transplant, they went away.

However, this time, being on dialysis for almost four years has complicated things, and I've developed some kind of irritable bowel disease. It's rather unpleasent; it makes me feel awful all the time, and it's really begun to affect my life in the past six months.  Add the complications from this condition in with being on dialysis and you've got one worn out and useless Steve.

So, a few months back, I got myself a GI doctor - who's just awesome.  I really dig this guy's morbid sense of humor and his clinical work is second to none.  So, a while back, we had a colonoscopy, which I've talked about before - the anesthesiologist messed up, and Steve almost ended up a pile of goo on the table, if not for the intervention of his quick thinking and beautiful wife, Jordan.  Jordan used her super-keen senses of nursing power to determine that my Oxygen saturations were less than optimal, and basically saved my life.  Make sure you buy her a lollipop if you ever meet her.  Anyway, during that colonoscopy, we took a biopsy of the mass he found and thankfully, it wasn't cancer.  But it was still huge, bleeding, and blocking..... just an awful confusing mess.  So, we put me on some medicine to try and shrink it - and I went on my way for a few months.

So cue last week, when I had a follow up colonoscopy.  The mass was only 12 cm inside my old butticus, so we decided I didn't need sedation this time.  That's right folks.  I went, prison style, into my own colonoscopy - watching on screen as a camera invaded my holiest of holeys.  It was an.... experience for sure.  I was glad they used lube, even though it was a little cold.  Anyway, the doc determined that the mass hadn't shrunk or gotten any better from the prednisone and asacol treatment we'd been giving it.  So, it looks like I might have to go in for some colo-rectal surgery to have this removed.

AWESOME.

I mean, great... I just want this resolved.  I don't want this complicating my chances on getting a transplant.

And speaking of that.... ever get the feeling that people are plotting against you?  Sometimes, I feel like the transplant department I'm registered with doesn't have my back.   But that's a rant for another time.

Anyway, I've got pictures of my colonoscopy!   The first two are pictures of above and below the mass.... clean, healthy colon.  In fact, the doc called in Pristine.  But, man.... the rest.... that's what makes me so logy, tired and awful.  This thing gets inflamed, bleeds, makes me tired.... blocks me up.... ugh.

Fun.  I always love trips to the doctor that comes with photos!  Especially ones that look like a weird cave....

Anyway, I'm just glad that we're getting this taken care of.  One more thing to get me on the road to recovery.  Now, after this, we get me a kidney and.... man.... I think I can finally start to take on the world again.

I daydream a lot about being healthy.  It's the dreams that keep me sane in these hard times.   It's the laughs that keep me focused, and it's the friends that keep me from sinking.

Whew

So, the procedure went fine yesterday.  Whew.  No complication.  Gotta admit, I was psyching myself out on this one. 


I'll post more of an update later - just a note to let you know I'm fine!


~Steve

Keeping it light....

A salesman walking along the beach found a bottle. When he rubbed it, lo and behold, a genie appeared.

“I will grant you three wishes,” announced the genie. “But since Satan still hates me, for every wish you make, your rival gets the wish as well — only double.”

The salesman thought about this for a while. “For my first wish, I would like ten million dollars,” he announced.

Instantly the genie gave him a Swiss bank account number and assured the man that $10,000,000 had been deposited. “But your rival has just received $20,000,000,” the genie said.

“I’ve always wanted a Ferrari,” the salesman said.

Instantly a Ferrari appeared. “But your rival has just received two Ferrari's,” the genie said. “And what is your last wish?”

“Well,” said the salesman, “I’ve always wanted to donate a kidney for transplant.”

---------------------------------------

This made me chuckle.  I'm a bundle of nerves today.  Procedure tomorrow.  Just have a weird feeling.

~Steve

Fears

I have to go to the hospital in couple days for a minor procedure.  It's no big deal, really; I've had it done before - though last time I did, it was performed in an outpatient center and something went horribly wrong and I ended up being rushed to the hospital in an ambulance.  If it wasn't for the quick thinking of my wife, who's a nurse and asked to be in the room, I would have coded out.  Instead, I woke up from the procedure coughing out massive amounts of frothy blood.  When asked how I felt, in the midst of throwing blood all over the room, I calmly said "I think I can feel the effects of the medicine starting to abate."  Always trying to impress, I am.

So, this time, my doctor is doing the procedure in the hospital to ensure that if anything goes wrong, I'm in the best place for emergency treatment.  That's what it's like with me; I have so many co-morbidity's, that simple procedures can become life-threatening situations.  I'm used to that feeling now; the first time I really encountered it was back when I had my first transplant, and I had to go in for a "minor procedure" that I would "be out for the weekend."  I spent almost two months in the hospital after that one and almost completely lost my transplanted kidney.

So, since then, I have always been a little scared when I have to have something done.  It's normal for anyone to feel nervous about medical procedures.  Medicine and surgery is a pretty amazing thing; it's come so far in the last 100 years - it used to be such a barbarous practice.  It's amazing what they can do now - and it's amazing what the body can endure.  But it's funny; sometimes people endure the most horrific and difficult situations and they come through clean, and other times it's just a slight, little mistake that kills them.

I've survived some pretty crazy and intense situations.  I used to feel so bad all the time, I thought I was just some kind of weakling.  Turns out, I'm actually pretty strong - I kept myself going through things that either slowed down or killed other people.  So, on one hand - I'm pretty proud of the constitution I've had for a long time. 

Still,  I get scared.   I'm not the most afraid of the procedure going wrong; sometimes shit happens, they say.  What I'm scared about is what I won't get a chance to accomplish.  There's always something more to do in life - and the thought of not being able to achieve goals that I dream about, still, scares me more than anything else.  I'm scared of leaving people behind - leaving them behind without letting them know, honestly, how much they meant to me.  And it's not just "saying" it - it's the things I do for them.  I still have a lot to do for people to show them how much I love them and how much they mean to me.  The fear of not being able to do that is palpable for me.  And, in the days before the "procedure", these thoughts consume me.

It's not enough that we say we love each other - although that's an amazing thing, and a good start - we have to live that way as well.  Our actions must speak as loud as our words - and this is often the hardest maxim to live up to in life.  But it's wanting that - wanting the better - that keeps me going and keeps me strong in the face of these hard times.

So, I'm waiting for the date - trying not to let the fear wash over me, but also keeping in focus what's important to me. 

~Steve

Frustration....

I can't speak for everyone on dialysis, but I know for me a big part of being a dialysis patient is dealing with frustration.

Life, in general, is full of frustration but you add in the complexities of living with ESRD and being on dialysis and you've got a giant heaping bowl of frustration that you have to swallow every day. 

Sometimes, what people don't understand about the disease is what's really frustrating.  When I talk to people, a lot of times they say "What did you do?" when I tell them I have kidney failure.  Or they imply that I drank and drugged my way to lost kidneys.  Sometimes, there's a lot of judgement.  Or people will often come up to you with some kind of holistic miracle cure - I've been offered so many snake oil pills and teas that will make you "feel better" but they don't realize that my kidneys are DEAD and unless you have some kind of medicine made from the blood of Jesus, you're not going to revive my dead kidneys.  In fact, because I have no kidneys to filter out anything from my blood, if I took these herbal supplements or drank this strange tea, it would just stay in my blood and toxify me.  Yay. 

Or, my favorite, is when I say I'm still on dialysis and people say "Oh, you still have to do that?"   Dialysis is rarely a temporary thing.  In extreme cases, it can be - when people have some kind of acute renal shut down, but when your kidneys have atrophied and died, you're having some kind of renal replacement therapy for the rest of your life.  It's dialysis or die, baby!

Or, of course, there is the transplant.  But, again, highly misunderstood.  A transplant isn't a miracle cure, but rather another form of treatment.  When I had my first transplant, I often heard this...."Oh, but you're better now, right?"

"Oh, but your better now right?"  is the nails on the chalkboard that ESRD patients have to deal with.  People have this innate need for people to fully recover when they get sick.  I can't blame them - part of it's love and concern for the patient, and part of it's concern for their own health and mortality.  I suppose when you're "healthy", the thought of being "sick" is one the most mortifying concepts.  I know it was for me before I got diagnosed.  But seriously, in my chats with dialysis patients, a phrase we hate to hear is "Oh, but you're better now, right??"

Yes, frustration and being misunderstood.  Also, frustration at the waiting.  Sometimes being on dialysis feels like waiting to die.  You're attached to this giant friggin machine, it spins your blood and fluids and pumps it back into you.  Basically, you're this cyborg who can't move for hours on end, and you feel useless as shit when you're done.  That's frustrating, especially when you're trying to live a life!  And it's never ending.... you don't get a break.  You don't get to say.... "Ah!  A week off!  I'm going to go dancing!"  It's relentless, it's monotonous and it never changes. 

I feel like I wait by the phone, too - though I honestly don't look for the "call" any more.  But part of me hopes that every time my phone rings, it's someone to say "we've got a kidney.... get to the hospital...."  It reminds me of the Greek Myth of Tantalus.... always sitting neck deep in a pool of water, but when I try to reach out to get a drink of water - it all recedes.


How do I deal with frustration?  Heh.  Writing helps.  Telling jokes.  Playing my guitar.  Listening to my wife.  I'm lucky - I have the most amazing partner in this.  Not everyone's so lucky. 

~Steve

Vacation

One of the reasons my wife and I decided to switch to doing home hemodialysis was that we could, potentially, take the machine out of the house and on vacation with us.  With our wedding and honeymoon looming, we thought this would be a great option.  Normally, traveling on dialysis includes setting up dialysis at another dialysis center, local to the location of your vacation - and going to a strange center is always a little weird.  But if we could do it ourselves, in the comfort of our own room, we'd have more time together and a bit more freedom.

So, as I wrote about earlier, we set off and trained to use the NxStage System One.  It's been pretty awesome - but one of the best things was we took it on our honeymoon.

We were lucky enough to have our honeymoon out on Lake George, NY - at this glorious hotel called "The Sagamore".  It's one of those old-time revival hotels that's on a huge sprawling manor.... it's quite amazing.  The Today Show was actually up broadcasting live from there the day we checked in.  The Hotel had just been renovated, and it was beautiful.  We were actually one of the first people to stay in the new rooms in the new wing.  The hotel was very accommodating to our needs - storing all my dialysis supplies in a little closet in the hall.  There was quite a few boxes of Dialysate Fluid needed for treatment -  I used 25 Liters a treatment, and they came in 5L bags, so I'd need three every treatment.  Two came in a box and the company sent WAY more than we needed!  But, we had a little table in our room to hold the machine, and I was able to lie on the bed, and get diaylized.  We'd spend the time watching TV, hanging out and ordering room service.  All things considered, if you have to do dialysis, it wasn't a bad way to spend it.

Now, the previous fall, I had a chance to co-produce and co-direct a Public Service Announcement for Reel Productions of Albany, NY.  I worked with a great guy named Joe Bashant, who had come up with an anti-drinking and driving spot.  We spent two days filming - one in Albany and one in a morgue in Pittsfield, MA - and had a good time doing it.  We finished the commercial, Joe edited it, and worked on getting it shown nationally!  My first national commercial.  I was very excited, and a few weeks prior, Joe told me it would start airing.  I was constantly searching for it on TV, but I never found it.  Then, on my honeymoon, we were watching TV - the FX network as I recall, and suddenly - it came on!  Jordan said, "Look!  It's your commercial!"  It was a fun and surreal moment, for sure - one I'd probably have missed if we didn't have to stay in the room and do dialysis.  So, I always look at that as a good thing.

We had an amazing time on our trip.  Lake George is gorgeous in the summer, and it's nestled right in the Adirondack Mountains of New York, which is one of my favorite places on Earth.  My family has a bit of land on the Western Border - and at the end of the week of our Honeymoon, my family's annual "Clambake" was to take place.  So, we loaded up our car, bid adieu to the Sagamore - and drove across the Adirondack Park to get to camp.  We hopped on Rt. 28, and had a great trip.  In fact, I recommend that anyone take a trip across 28 from around Lake George to Old Forge.  It's just amazing.

We got to camp, and celebrated not only our recent marriage with the family, but just the general old good times of the Clambake.  We even did a session of dialysis in my parents cabin in the woods.  My father had built a solar powered battery system (with a backup generator) that allowed us to power the NxStage Machine.  Jordan and I did dialysis in the woods.  It was pretty surreal!

All in all, I'd say the NxStage Machine is pretty awesome.  Doing dialysis at home does require a lot of work on your behalf, but I like the feeling of being active in my own care.  I at least feel like I have something to do with keeping myself alive, rather than just showing up at a center saying "take care of me!!!".

The NxStage System One

The Sagamore Hotel

Jordan and I, riding in a horse carriage on our honeymoon.