What a long strange trip its been.

So, I've been maintaining this blog for several years now and I guess its finally time to end the journey.

Last Saturday my phone kept ringing. Unusual for me but I kept peeking at the numbers... mostly from Massachusetts but none recognizable. I don't answer phone calls if I don't recognize the number. If its important they'll leave a message. No messages were left.

Meg commented, "are you expecting an important phone call?" Well, I'm waiting on a kidney. She said "oh, right."

Sunday morning I awoke to the sound of what I thought was a leaf blower. But as it got louder and louder I recognized it as a helicopter. I thought... The Coast Guard and ran out onto our back deck to see if they were circling an area of the river, which isn't uncommon here in the port. But it was instead a medical copter heading north towards Portsmouth.  Still dark, I looked up into the sky and found myself staring straight into the big dipper hovering above my deck. I went back in to start my normal routine of tea, toast and CNN. The news was annoying so I opted to watch a show on demand instead. About 15 minutes into my show, at approx 6:35 am, my phone rang. Another Massachusetts number. I silenced it and continued to watch the show. About two minutes later the phone let me know there was a message. Who would call at this hour and leave a message. I listened to the message immediately, it was a representative from MGH, explaining that they had a kidney for me and needed me to call back ASAP.

I called back and spoke with the woman for about 15 minutes. It was all good news. A non risk kidney from a person in their 30's. She asked when I could get in and I said by 10:00 am, she said "make it earlier if you can." I rallied the house and we got to MGH for 9:30. They ran some quick tests and decided I should dialyze for two hours first because my potassium was high (darn, why did I allow myself to eat those mashed potatoes last night).

I was on dialysis by 1:40 and into the OR prep room by 4:20. About thirty minutes later I was in the OR and three minutes later I was out and don't recall a thing until much later that night when they woke me up so I could wave to Meg and Annie as it was time for them to leave.

Back in my room I was struggling with the need to pee, but all my pee was coming through the catheter they had put in me. I guess it was flowing out slow enough so what was hanging behind was putting pressure on my bladder. Eventually they understood what I was saying and they started manually helping the fluid move along by shifting the hose to accommodate the flow. Relieved I finally fell asleep. Unfortunately I was awoken almost every hour for some kind of poke or prod.

Monday morning I awoke to some slight discomfort but as the day went on the discomfort had become pretty real and it took a while to get that settled down. After that Monday went mostly well.

On Tuesday morning Meg visited and I could tell I was irritable and she just wanted to leave and I didn't blame her. Later in the day my heart started to race. it took about 5 hours to settle that down, but once settled I fell into a deep sleep and they actually let me sleep for about three whole hours. Still feeling a level of pain they jacked me up on pain killers and that got me through the night into Wednesday morning.

Wednesday started off well but then my heart began racing again... about two more hours of that before they got it settled and I got another two to three hours of solid sleep.

All the while I was being texted by well wishers and folks on Facebook with their messages of getting well and congratulations. None of which I had the focus to reply to.

Since Wednesday afternoon I've actually felt mostly great with an awareness of my surgery, but no real excessive pain worthy of whining about. I began to settle in nicely and order some food and watch some TV and listen to some music and nap... it was almost a dreamy experience.

Based on all of our conversations I was led to believe that I should expect to go home on Friday, but Thursday morning they decided they would send me home Thursday instead.

So Meg and Annie came and got me. We got a few lessons on proper care and my medication list and we departed for the port. With a short pit-stop it was a much longer ride than normal and when we got home I felt like hell so I climbed immediately into bed, where about 25 minutes later I was back to normal... well... relative normal.

This morning while Annie was in school and Meg was too busy on her computer to notice... I secretly broke down crying. I'm not even sure what those tears were for. Perhaps the joy of this long strange trip finally coming to an end. Perhaps the sadness that another persons life was lost so I could try to get back to a more normal life. Perhaps its just the natural expression of being so overwhelmed about everything and just feeling a sense of relief. Idunno... no shame here for these tears. I've earned the right to cry for any reason after these past eight years and particularly the last four and a half that I've been on dialysis.

Thanks Laura Debesse Faherty for giving me the best blog name to track my story. And thanks to all whom have read these stories and encouraged me to continue. The trip isn't officially over yet. There a few battles ahead, but unless something significant comes up I'll end this now the way I always have

My name is Bil... and I have kidney disease... but I also just got a new kidney and the outlook is good.

Tar Balls and Blades of Grass

Three months since I posted that I was approx. 5th on the list to receive a kidney and back then I suggested that perhaps as soon as late June I could expect a transplant. Well here it is mid to late August and I'm still on the D, but I did in fact get my first offer for a kidney earlier this week. Unfortunately 20 minutes later they rescinded the offer when they discovered some calcification, making the kidney less than great for anyone.

As the eternal ponderer of all things I had to wonder about what it meant that I got that call. Does it mean that there's no one similar to me on the list between my position and number one on the list? Or does it mean that they offered that kidney to another prior to me and that person turned it down and so it was then offered to me. Or was it offered to two three or even four people before me and they all turned it down.

I know two things to be true. One is that they usually ask you to dialyze first if the call comes on a dialysis day, but in this instance they would have wanted me to skip dialysis. The other is that when I asked if I could have 30 minutes to decide if I wanted the kidney (I wanted to get advice from my Nephrologist) they said they would give me 20 minutes.

So what does all of that mean? For some reason they wanted to get that kidney into somebody fast. Had it been scheduled for someone else and at the last minute something wasn't right and so they went to the next guy on the list?

Have you ever been in the drive through line at your local coffee shop, watched them hand a drink to the guy in front of you, then watched as he hands it back and they hand him something else instead? When you pulled up to the window... did you wonder if you got the drink that was just handed to the other guy? Did he sip it and that's how he knew it wasn't his? Did he sneeze into his hand just before grabbing that cup and handing it back?

I kinda feel like that was my kidney. The one unwanted by another. Its not like he sniffed it and said, "oh man, that's not mine." Still... it was somebody else's reject before becoming mine. I'm thankful they discovered that it had issues before I drove all the way to Boston, or worse before it ended up inside of me. Which brings up the question, why didn't they know this before they even called me?

Of course all of this is speculation surrounding some of the worse case scenarios of the who, what, when, where and hows regarding this kidney. for all I know this person's kidney may have literally popped out of their body when they died in some horrific accident and but for a few bit's of tar and blades of grass, was perfectly good so long as it got put in someone in a couple of hours. I'm being silly of course but conceptually something like that could have happened, yes?

So the question is: Next time the call comes in do I take the kidney no matter what? Or do I wait for the kidney that isn't all rush rush? Do I wait for the kidney where I have several hours to decide and to get myself to the hospital? It's been a long 4 plus years of dialysis. The transplant can't happen soon enough for me... so I'm not sure I trust myself to make a good decision.

My name is Bil... and I have Kidney Disease

Here's to the potential for new normals

In case you had not heard... this week I heard from my transplant coordinator that there's about 5 or 6 people in front of me on the list. While you can't assume anything I did do some simple math and MGH does approx. 120 kidney transplants annually so if I assume they do approx. 10 per month then it's not a ridiculous idea to assume that I might actually get the call as early as late June.

On one hand this is great news. On the other hand no one should have told me this because it's infiltrating my every thought. I awake each day with a little too much excitement over the idea that I'm one day closer. I spend the day thinking about how my life will be different, better, more amazing post transplant. I imagine myself drinking a 24 ounce glass of cold chocolate milk, or orange juice, or heck even water and I don't mean just drinking it, I'm talking about glugging it all down in one fell swoop and maybe going back for more. I imagine myself buying and eating an entire musk melon (resembles cantaloupe) maybe even two. I can't wait to just eat a banana.

I dream of hikes, of actually getting this flabby body into some kind of shape resembling healthy. I imagine nights without waking up coughing due to the fluid that's moved into my lungs while I lie in my bed. I dream of going on a vacation and not having to schedule two or three dialysis treatments. I want to know what it feels like to not have dialysis again, to gain back the hours that were mine to do whatever I wanted and not have to worry about that whole dying without it thing.

Then I start to fantasize about the possibilities... in a way its like a second chance, a do over. Maybe it's time to get back to papier-mâché, I've put off that kind of thing for 14 years... I had reasons and excuses but now I kind of want to tell the world to get the F outta my way... I'm doing what I want to do this time and not always "the right thing" or "the expected thing". I used to have a "love me love my way" attitude about life but I sort of gave that up as responsibilities crept in to my world. Now nine years of less than great health has taken over the parts of my life that should have been my down time to do what I want to do. Sure my kids still need me, but not in the ways they did 10 years ago. There's plenty of time for me to be selfish and still be present for the people who need me.

Of course I'm getting ahead of myself... there's still at least a few more weeks of dialysis, possibly several. There's the few weeks of recovery, there's the first six months that apparently tend to be a bit of a rollercoaster ride as they try to sort out the medication regiment you need to be on. They tell me the prednisone will do a number on me.

I'm trying to maintain a calm sense of reality, but throughout the day these thoughts creep in and I just can't help feeling a little antsy about the idea of being done with the version of life I've been living for the past decade and taking the reins of my new normal and making it as extraordinary as I can.

My name is Bil... and I have kidney disease.

Wait, Weight, What?

I don't know about you, but my weight can be a little bit fickle. Every spring I seem to drop a few pounds and every fall I seem to gain them back. In between the fall and spring I can fluctuate as well but usually in smaller increments. That was of course my M.O. prior to end stage renal disease and dialysis.

Those patterns continue now that I'm on dialysis, but now I also have to contend with my day to day weight changes. On dialysis its all about weight. We start with what we presume is our "dry weight", which is the weight we would theoretically be if our kidneys were working normally. As an example my current dry weight is considered 87Kg, or approx. 192 Lbs. Most days when I show up for dialysis lately my weight is between 88.5 and 89.5 Kg (195 - 197 Lbs). So I typically have to pull 2Kgs of fluid/toxins off during my treatments.

But sometime in September or October my weight will drift up to be about 89 or 90 Kgs. I don't usually notice the increase, but suddenly as the scale at dialysis reveals my weight as 90.5-91.5 Kgs it looks like we need to pull 3-5Kgs (7 - 11 Lbs). And as we attempt to get those fluids off of me we drop below my actual dry weight and I start cramping up during the treatment and have even passed out on a few occasions.

On the other hand the same thing could happen on any given weekend. Where I don't dialyze Saturdays and Sundays as a general rule, if I consume too many fluids over any weekend I can also gain a few extra pounds and then I really do need to get that extra fluid weight off of me.

Eventually spring comes back around and my weight drops again. And this is where I really get into trouble. As my weight drops it appears to me that I need to have less fluid pulled off, and not wanting to pass out I shoot for less... say 1Kg instead of 2Kgs. Well this leaves an extra Kg just hanging out in my body which finds its way into my lungs as I try to sleep at night and wakes me with coughing and shortness of breath. If this happens on a Friday night treatment and then I have one of those weekends where I consume a little too much fluid, I can find myself at the E.R. on a Sunday looking for an extra treatment, which can take 10-18 hours to arrange, while all I can do is wait.

All this talk about weight... I can't wait to get a transplant so I can stop constantly thinking about my weight.

My name is Bil... And I have kidney disease.

Where are all the sunshine girls

I typically go to dialysis around 3:30 in the afternoon. Yesterday I was struggling after a weekend of dealing with fluid issues and so I asked if I could come in earlier than usual and they got me in around 11:15.

As I looked around the dialysis clinic yesterday I noticed how many people I didn't recognize. I noticed that there were very few there who's faces matched those of the people that filled those same chairs four years ago, even two years ago.

When I arrived four years ago I would see several elderly women who were coming off the machines or out in the waiting room awaiting their rides. We would chat and while no deep friendships formed we certainly engaged in many conversations. These women referred to themselves as the sunshine girls. They would meet up once every other month or so for a lunch on a Sunday.

About a year ago I moved my start time to about an hour later than it used to be and I really haven't seen the sunshine girls very much. Yesterday I assumed I'd see several of them based on my early start time, but there was only one sunshine girl there.

I knew one of the sunshine girls had passed away last year and another maybe 6 months before her, but there were about a dozen sunshine girls when I started... could it really be down to just one?

It's possible that some of the sunshine girls moved to first shift, but I know I've heard rumors of several deaths at our clinic in recent months, I just haven't been specifically aware of who had passed.

This also got me thinking about the ever changing staff at my clinic. Other than the manager, the receptionist, the social worker and two technicians, the staff is not the same as when I started. Since I began dialysis five nurses have left,  three or four regular technicians have left, we've gone through about a half dozen temporary technicians, our dietician has left and we've had at least three financial aid coordinators.

I don't know that I have any deep or meaningful point, but certainly we lose people along the way... doesn't matter what we're involved in and it's not always death that takes these folks away from us, but we do lose people along  the way.

Maybe soon I'll get a new kidney and I'll no longer need dialysis myself. Maybe some other guy or gal who only just recently started dialysis will wonder what ever happened to that guy with the really cool blanket. Did I ever mention my cool blanket? Maybe that's a good topic for next time.

My name is Bil... And I have kidney disease.

I miss who I used to be

I used to do things. I used to ponder over fantastic ideas. I made sculptures, papier-mâché monsters, wrote poetry and silly songs. I used to go out at night. I used to ride my bike for miles. I used to walk across states through trails in the woods. I used to write. I used to be somebody else.

I remember a day in my youth when I walked through Golden Gate Park with my friend Kyle Linehan. I was pretty much broke, but I fearlessly let life deliver me into situations and I took them on and that day life left a $5.00 dollar bill in the grass and I picked it up and it felt like a fortune.

I remember eating fried fish with my fingers out of a cardboard bowl as I sat on a board walk by the water in the Ghirardelli Square area of San Francisco.

I remember playing cribbage at John Barleycorn's while "Peg Leg Eddie" and "Three Finger Pete" played chess. We all drank good beer and ate Chinese pizza.

I remember walking my dog to the park in the Seattle rain and then hiding from him behind trees as I whistled for him, waiting for him to come find me. He always did.

I remember dressing in an AstroTurf grass skirt as I marched on a hot day in the gay pride parade, not because of my pride of being gay, I'm not, but because of an event I was promoting to raise money for the Northwest Aides Foundation.

I once built a 30 foot long coral reef with fish that swam in and out courtesy of a few old record players. I built an 8 foot tall waterfall and volcano that released "smoke" and appeared to have minor eruptions.

I made hats out of paper bags and sold them to the Berkeley Hat Company. And others were displayed in an art show.

These are just some of the highlights of my years as a man who loved to live life. Today I spend so much energy just being part of the day to day and staying alive that I have no energy for living. My life is pathetic.

Oh, you'll want to remind me of how special my children are to me and they are but life was not meant to be a sacrifice of one's own joy and to substitute instead the joy of one's children. Both should be part and parcel of the process, yes? The greatest gift I could give my children is to be an example of how to enjoy life even while I struggle to keep us all afloat. But the struggle has become greater than just keeping us afloat. Just being part of the normal day to day is actually an effort now and that effort robs me of the energy and now I've settled into this rut, but I hate it. I hate who I am now. I miss who I used to be.

My name is Bil... and I have kidney disease.

Who Face & Cankles

It's been 10 months since I posted an entry into this blog. Not that I haven't had a at least a few interesting stories to share, but I just don't seem to get around to sharing these days. But as I sat here at work today with little to do I decided to make a long over due entry.

As you know, the honeymoon is over and my health has been clearly declining. I can still trick people most days into thinking there's nothing wrong with me, but I deal with unwanted fluids on a daily basis. At night they move from the little pockets they hang out in while I'm upright into my chest and even my face. This causes me to have frequent coughing fits in the middle of the night and to occasionally wake up with a face like a who.

 

 

 

 

On the other hand, while I'm standing upright for several hours or even sitting I often find that my ankles have swollen and the elasticity of my socks leave semi permanent indentations into my legs about 3-4 inches above my ankles.

 

I've had several instances of ER visits due to excessive fluids and have had a few extra dialysis visits here and there on a random Saturday or Thursday to help remove fluids.

 

In January I had my "readiness" visits at MGH in preparation for the impending transplant that will theoretically happen sometime this upcoming year. I had to meet with the whole team again, although they're not all the same people I met with three to four years ago. Several of these people had never met me before and upon meeting me they had to review their records because they believed I had been on dialysis for about four years, but I looked more like I was just about to start dialysis. When in fact I confirmed I was coming up on my fourth year they were surprised to see such a healthy patient. Also they were surprised to hear that I was still working 40 hours per week. they expect someone like me to be working 20 hours per week or less and quite frankly they expect someone like me to look sickly and weak... and usually old.

 

While I often feel pretty good for a guy on dialysis I do have good days and bad days, good moments and bad moments and sometimes even struggle with the idea of bothering to keep it all up. Recently I had a week where I was ready to just die... I no longer had the will to fight. Its tiring. Its hard. And actually there are times when its just downright lonely.

 

I've become so aware of my lack of joie de vivre. I used to do things. I used to have energy. I'd wake up in the morning ready to solve any problem thrown at me. I would create little projects to do, some of them things that needed to be done around the house others that were just fun, creative things to do. Now I get up in the morning and pee, which is urgent but minimal and a trickle at best. I see myself in the mirror and I know that's not what I used to look like. I make my way downstairs for tea and toast and sometimes in the middle of the preparation I break out into a coughing fit so severe I vomit. Sometimes I vomit so severe I have to sit on the toilet or risk crapping in my pants. While drinking my tea and eating my toast I rest frozen peas on my face to get the swelling to go down.

 

There was a time when I pondered if dialysis wasn't the better option than getting a new kidney. These days.... I can't get a new kidney soon enough. realistically its probably 6-10 months away, but I secretly wish it would happen today... or tomorrow... or the next day... I'm running out of patience.

 

My name is Bil... and I have kidney disease

The Honeymoon is Over

As I hit my third year anniversary of being on dialysis this week I also can claim that I've had a month of some of the best sleep of the last 8 years of my life. It has not been a perfect month by any stretch of the imagination. I still vomit stomach acid more mornings than I don't and the mornings following a treatment tend to be the more severe occurrences of that, though no one seems bothered by this other than myself.

For my first two years and up to about 6 weeks ago, having a half a kilogram to one kilogram of fluid taken off during a treatment was typical and just two treatments per week were plenty to keep me running. But since about 6 weeks ago, I've needed 2 to 4 kilograms per treatment and three treatments per week to keep me running. This is a clear sign that my health officially is declining.

With end stage renal disease there's often a "honeymoon" period where the disease is present but not having any significant impact on the overall health of the patient. This typically is a 3 to 6 month period. I've been lucky to get almost three full years of said honeymoon period. But the honeymoon is over.

These days my treatments are for three hours. Last week a technician had accidentally put me on for three and a half hours, and I called them out on it at 3 hours and five minutes. Unfortunately that meant that I officially didn't have the full amount taken off. So I went into my next treatment a little heavier than normal. I asked them to take off a little more than normal but didn't want to push for too much... the more they take... the more intense my head ache experience can be (although my recent headaches have been quite manageable compared to those I was having prior to the increased treatments). Then the weekend came, where I go one day longer without a treatment... and man did I feel it.

I woke up Monday morning with very short breaths as my lungs had filled with fluid. I recognized the feeling from when I had spent the night in the hospital last month. As I tried to do anything active I became weak and incapable of getting much done at all... including a simple walk downtown (three blocks from my house) and a little work in the yard as we attempted to plant some tomatoes. I could watch... but the actual work made me weak and forced me to sit. And on my walk downtown I had to be picked up by car... I couldn't make it home.

I walked across Massachusetts in 2008 and today if my fluid builds up I can't walk 6 blocks.

On Monday they took 4 kilograms off of me. That's almost 9 lbs of fluid and that's after having a treatment only three days earlier. Clearly the honeymoon is over.

My name is Bil... and I have kidney disease.

An Ode to Sleep

Sleep. In 2008 you began your departure from my world. It was slow at first with your once a week visits of head aches and vomiting, but gradually you visited upon me countless nights of torturous hours of these headaches and an ever increasing need to pee, sometimes 5 times a night, draining me of my energy, my vibrance, my joie de vivre.

I remember you though. I recall the joy of a full night of sleep and the rewards of having the energy to do anything, including 80 hour work weeks and 10 day hikes through the woods of Massachusetts. Sleep has always come easy to me, even in the bad years but a full night of sleep is a long ago memory.

Two weeks ago I developed a cough. I also noticed I couldn't breath as deeply as I usually can. I mentioned it at a dialysis session and they set me up for a chest x-ray. That was a Wednesday night, Thursday my nephrologist called to let me know that I had some fluid in my lungs and that she wanted to increase the amount of fluid they pull off of me from a half KG to two KGs. Meanwhile I was coughing and she asked about the cough and I mentioned that was the reason I even started discussing my symptoms with the dialysis clinic and she said it almost sounded like pneumonia.

The seed of pneumonia planted I called my PCP and scheduled an appointment for Friday prior to my dialysis treatment. My PCP couldn't specifically say that I had pneumonia but she was more worried that as a kidney disease patient I might have congestive heart failure. She said the only way to know was to send me immediately to the ER. She called ahead to let them know I was coming and what she expected them to do.

ER visits being what they are, never quick and simple, meant that for the next few hours when I should have been receiving me dialysis treatment I was instead being hooked to electrodes and having blood samples drawn, nitroglycerin patches on my shoulder and oxygen in my nose. Ultimately they determined that I had neither pneumonia or congestive heart failure, but just had excessive fluid. And of course since I still needed to dialize, they decided to keep me over night and dialize me in the hospital.

The nitroglycerin gave me a serious headache which ultimately led to vomiting. The hospital didn't dialize me until 10:00 PM... all I wanted was to sleep but couldn't for the headache not to mention the constant visits from nurses wanting to check my blood pressure or my breathing or some other vital sign. Turning on the lights making noises keeping me awake until finally 10:00 pm came and they brought me to the dialysis room.

Within 10 minutes of being hooked to the machine I fell asleep from pure exhaustion. I awoke as they were pulling me off the machine three hours and three and half KGs later. No headache. Breathing normal. Feeling somewhat rested. They brought me back to my room and I peed just once all night. It was an amazing night of sleep.

All of my treatments since that night have including taking a minimum of two KGs off of me, and up to three KGs. No more head aches and vomiting. No more peeing 5 times per night... just once or twice. Just nights of sleep.

Sleep. You have returned to me. For eight long years I have been missing you. I do hope you've returned for good. I so appreciate your night long embrace. If you leave me again.. these days will certainly be cherished and remembered as the days you came back... at least for a short while. And while I have you I will sleep you long and deep for as many nights as I can hold you.

My name is Bil... and I have kidney disease

A quandry

As I approach the end of my third year on dialysis I face a quality of life conundrum. The typical end stage renal disease patient dialyzes three times per week, but my general good health has allowed me to dialyze only twice a week and maintain my numbers. Sometimes I hover on the dangerous edge of the numbers, but I generally keep things in check. In recent weeks I've seen a few of my numbers climb a bit, a sign that perhaps my twice a week treatments are no longer enough to truly keep me safe. What does that mean exactly? In the worse case scenario it means I run the risk of a stroke and death, on the lesser side it means perhaps if I keep this up for a long time I could do damage to my body that will have future impacts on my overall health.

A month or so ago I had received a letter from MGH informing me that as a resident of Massachusetts with type A blood on average I can expect a transplant sometime between the end of my third year and the end of my fourth year. Now there's no guarantee that this will be true... it's just an average scenario. Still I think it's fair to assume that my time on dialysis is winding down and hopefully I have less time ahead of me than behind me.

I've always had issues following a treatment. About two hours after every treatment I get a headache. I usually just go to bed and do my best to sleep it off. Then I awake on the following day feeling like I'm made of straw... I feel dry and brittle. I feel hungry in a way that I can't seem to satisfy, but simultaneously most foods don't sound very appealing to me. In the last 6 to 8 weeks there's been a change in my post treatment issues. The headaches have moved to a new extreme and I'm vomiting in the middle of the night. I don't sleep well and I struggle to get up the next day.

My dialysis center team has been suggesting that perhaps I ought to try going back to three times per week. I've been stubborn about the suggestion and quite frankly haven't been willing to believe that adding back a treatment each week would resolve the problem. In my mind it would mean one more night of getting sick and one more day of feeling like straw. Who in their right mind would want that?

But in an effort to prove to my center that the additional treatment each week isn't the solution I agreed to have an extra treatment last week. Then prepared for a miserable Wednesday evening and less than wonderful Thursday. But my Wednesday came and went with minimal issue and my Thursday was not as difficult as my recent Tuesdays and Saturdays. This was unexpected. I assumed it was a fluke and that Friday I would return to business as usual. But again Friday's treatment was my first in weeks with minimal issue.

So I'm finding it hard to argue with my center and my doctor that three treatments per week would be better all around. But this creates a new concern. Leaving early from work on Mondays and Fridays impacts my weekly income. Adding Wednesdays will hurt financially. Also that I'm not vomiting doesn't mean I'm not still dealing with headaches and the straw feeling.... so I'll be adding a day each week of feeling less than great in place of two nights of pure misery... neither is acceptable but those are my choices.

People will say, "well, can't you work longer hours on the days that you don't leave early?" To which I reply... why should I be required to? Am I not working hard enough by attempting to put in as many hours as I can while also trying to maintain my 8 hours of treatment (and would be 12 hours) each week. Or perhaps they would suggest that I dialyze later on my treatment days so I can work more hours... and that means I get home later at night and don't eat diner with my family. You see it's a quality of life thing. What part of my life am I willing to give up so I can live long enough to get a transplant?

And even as I type this I have no idea what to expect on Monday night. The two days between Friday and Monday will still be there if I go three times per week... will I still get the extreme headache on Monday nights? So now my weeks will include one night of misery and two less than great nights and three days of feeling like straw?

Folks, I haven't even begun to talk about the financial stress of having recently been forced onto medicare as my primary health care. But that sounds like a topic for another day.

My name is Bil... and I have kidney disease.

Trial & Error... Still Learning.

 All in all dialysis is not a bad gig when you think about the alternative. You give up 12 hours of your week (in my case 8 hours) and in return you get to live. Who wouldn't choose life? I choose life every time.

I've been on the machine now for a little over two years and along with the 8 hours I give up each week I also have come to accept that following each session I will have a terrible head ache and will wake up the following morning with the sensation of having a mild hangover. Not fun, but still... life. I always choose life.

Recently I was on vacation. We took a little road trip through Connecticut and New York. I scheduled two sessions throughout my vacation so as to not risk feeling sick. I probably could have skipped and been fine, but why risk it, right?

For the most part these visit went swimmingly. In CT they were unaware of my special dialyser... oh wait... I forgot to tell you about my special dialyser. Let me back step for a minute:

When I first went on dialysis I was experiencing this sensation of losing my breath (imagine stepping into a freezing cold shower) every time the process started. After a few minutes it would go away. I had mentioned it to the staff and my nephrologist and they thought that was unusual so they tried a different dialyser (A dialyser is just a filter and it looks like the same kind of filter you might have in your house if you have a water purifier system). The new dialyser prevented that sensation so it was decided that I was allergic to the "normal" dialyser. Back to CT.

So as I inquired about their use of the special dialyser they didn't seem to know anything about it. I called back to my center and the manager there told the center I was at the name of the dialyser and so they reset the machine with that dialyser and I was off and dialysing... 45 minutes later than planned, but no harm no foul.

In upstate NY I asked the same thing... "You have my special dialyser, right?" They didn't seem to know anything about it. Again I called my center and they gave the name of the dialyser. This time the center in NY said "oh, well that's what we use on every machine." I looked around the room and could see that every dialyser was exactly the same as every dialyser back in Newburyport but mine. I know mine because it has a blue top and the "normal" dialyser has a dark grey top. I was unwilling to argue with them, I decided to just suck it up and let them use the normal dialyser.

I asked them to only take 0.5KG off of me and they were fine with that, my numbers suggested I could actually afford to have less. The session went fine until the very end as they were about to take me off the machine and I started cramping. This is very unusual for me unless they take too much off me. Turns out the woman messed up and somehow set the machine to take 3KG off of me instead of 0.5KG. Yikes!

Usually this would have had me pass out, I can't even explain why I wasn't half dead in the chair. But more importantly... I wasn't even slightly headachey. what was that all about? I always get a headache and the more they take off of me the more headachey I get... WTF is going on here?

I've been pondering this since it all went down. the only difference was the dialyser and the fact that they took too much off me. Taking too much off of me should have made me exceptionally headachey. why didn't it? It had to be the farquing dialyser.

I mentioned it to my center when I got home and the manager told me it couldn't be the dialyser.. the only difference between them was the method of sterilizing, otherwise they are exactly the same. They continued to use the special dialyser and I continued to get headaches.

Last week I saw my Nephrologist for the first time since returning from vacation. I told her the story and she agreed that we should at least test the theory. Last night for the first time we tried the "normal" dialyser. I came home headache free. I slept like a baby.

I can't call it science yet, but I suspect that this will be true on Friday of this week too. I'll keep you informed on how it all turns out.

My name is Bil... and I have kidney disease.

2 years and 137 days

Mass General Hospital has taken a very hands off approach to my kidney disease. When I was with Lahey Clinic I would get regular phone calls from my coordinator. MGH never calls me, unless I call them or email them first. I'm not saying this is a bad thing... I'm just mentioning it.

When I first moved my care over to MGH they did a full work up on me. Based on what I had heard from the coordinator at Lahey and from my nephrologist I should have expected one of these work ups annually. When I hadn't heard from them by fall of 2014 I had decided to contact them in December to ask if I should be coming in for my annual visit. I was told at that time that MGH had changed their process relative to the typical transplant centers and only asked their clients to come in every two years. So I was to expect an appointment sometime in the summer of 2015 to re-evaluate my condition.

All summer I've been anticipating a phone call or letter from MGH asking me to come in for a full work up and re-evaluation. This week I decided it was time for me to make the first move and contact them. I sent an email to my coordinator and she called back about 20 minutes later.

MGH has once again changed their process. Now they estimate your transplant and don't have you come in until approx one year before estimated time of transplant. In my case being of blood type A in Massachusetts the average wait time is approx 4 years. I've been on the wait list for 2 years and 137 days (2 years and 139 days on the day I'm writing this). So in about 6 to 8 months I should be called in for the workup (assuming the average wait time doesn't change to 5 years).

This is actually the first time I've really had any inkling of an idea about when to expect a transplant. In a little over a year and a half I should be somewhere near the top of the list. Its kind of nice to know that. I can now work out how many more times I'll be able to enjoy eating sushi... an important thing to know when you love to eat sushi and know that after a transplant you aren't supposed to eat it.

I'm also not a guy who likes exercise... I'm just too darn lazy to make time for it. Hey! At least I'm owning that. But having recently turned 50 and knowing that surviving an operation like a kidney transplant can often depend on your physical health, I often ponder when I should start taking my lack of exercise a little more seriously so I'm prepared for the operation. I mean why exercise for a year and a half if I really only need about 6 months to get my 190 Lbs of twisted steel and sex appeal back into shape? Clearly I'm putting off the inevitable.

Knowing that I've been on the list for 2 years and 137 days allowed me to also estimate the number of needles I've had poked into my arm. I'm somewhere up in the vicinity of  520 and there's a path of tiny needle scars from my wrist to halfway to my elbow as evidence. A sort of history of my days on dialysis. A calendar if you will. Notches in my lipstick case... only its my skin.

Somehow this knowing about the approx 4 years has given me a sense of direction and purpose. A goal to actually aim for. Being over the half way mark upon finding this out is also a favorable place to be. I theoretically have less time left than the amount I've invested. That is a good feeling. Like taking a loan out on a car and being more than halfway to having it paid off.

That's pretty much all I have for today.

My name is Bil... and I have kidney disease.

For Veronica Wherever She May Be

How easy it is for a year to fly by and without a blog post in almost 11 months. As dialysis has become such a normal part of my world and my kidney disease about as scary as clipping my fingernails, I have less and less to say about it and the overall experience. I suppose I wish there was some great news to share like I'm on my way to the hospital for a new kidney, but realistically its only been two years on dialysis. Here in Massachusetts it takes three to six years before you receive a cadaver kidney so I've got a minimum of one year and more like two to four more years of dialysis before my name creeps to the top of the list.

I remain generally healthy. I am now a full year in on my twice a week treatments as opposed to three times per week. My quality of life greatly improved with only going twice per week and my general health seemed to increase as well. dialysis is wearying. Who wouldn't want to go less than three times per week. In fact I recently asked my nephrologist if we could try something else new.

I asked her if we could try three times per two weeks on a schedule of Monday, Friday of week one and Wednesday of week two. She had to sit down and wipe the sweat from her brow at the very thought. In her mind like most humans time passes by in seven day cycles. To her the second week would mean only one dialysis session in a week. The thought made her nervous. For me time is linear and continuously moving forward. So I only see a pattern of dialysis, then three days off, then dialysis, then four days off, then dialysis, then four days off and the pattern repeats. In her version, one dialysis session in week two sounds like a big deal, but in the end its still only 4 days between sessions as opposed to the three days I go through now.

I'm still working on that with her, but there's a bigger problem than just convincing her. The dialysis clinic in the end is in the business to make money. That I don't go on Wednesdays anymore is already costing them money. It's not like they can fill my spot on Wednesday, nobody goes once a week. imagine if I threw this wacky schedule into the mix of not showing up on Wednesdays of week one and then only showing up Wednesdays of week two. They would essentially be earning the income of minus one patient each month relative to their full capacity. So they will never allow this. Perhaps they would have a year ago when I was only one of two or three regular patients on the third shift, but over the past year another local clinic closed and our clinic picked up many new patients and has a full plate of regulars. So I would almost need to find a struggling center and start going there.

Then there's the whole insurance industry to deal with. I've been told they would never pay for my dialysis unless I went at least twice a week. This sounds a little odd to me since my schedule of three times every two weeks would mean less cost to them. But that is a bridge I'll need to cross if and when I convince my nephrologist to go along with this new schedule and then also find a local enough clinic to take me on as a patient.

My name is Bil... and I have kidney disease (not that you care)

updates from the trooper

So in June I went to Florida for a short trip on a random Friday through the following Tuesday. During this trip I should have scheduled a dialysis treatment for Monday... but being the stubborn person I am I decided to skip the Monday treatment and just wait until Wednesday. I never felt worse for skipping that treatment and since starting dialysis that was the longest I had ever gone without a treatment. I had always suspected that while the standard dialysis schedule includes three visits per week that I could probably get by fine on only two visits per week. Upon return from my trip I asked my nephrologist to allow me to run a trial of only two visits per week and she reluctantly agreed to let me.

I've since run on two visits per week for several weeks. Every month I have blood drawn and a report card based on that blood work to let me know how my health is. My first report has been for all intents and purposes exactly the same as it has been over the past year. So I now have the blessing of my nephrologist to continue with the twice a week visits.

While I've only gained back one day without dialysis its amazing how much better I feel all around for the change. I generally feel a little crappy about two hours after a treatment and I always find it harder to get out of bed on the mornings following a treatment... but now having removed a night of feeling crappy and a morning of the struggle to get out of bed I've given myself a little bit of my life back... and that in itself feeds my appreciation of the good life that I have.

I also have to mention that I've pondered the possibility of NOT getting a kidney transplant. I haven't spoken about this to anyone until just this week. There's a social worker at the dialysis center and once every few months she along with the various members of the staff are required to sit with me to discuss my health from every aspect. It was supposed to happen this week but due to someone forgetting to tell my nephrologist it didn't happen, but my social worker was there and decided to chat with me anyway. While we were talking I had for the first time revealed this thought of not getting a transplant.

You've heard it said that sometimes you need to be thankful for the things you didn't get. When this all started I only wanted to avoid dialysis and to receive a donor kidney as soon as possible. Upon starting dialysis I had hoped that a donor would be found before I had a chance to come off the catheter and start using the fistula. Alas very few donors actually made it far enough to even seriously be considered and the ones that were, were all ultimately eliminated for various reasons.

Initially this was a somewhat depressing reality... not that I'm one to ever really get down and feel woeful for my situation, still when you have a goal and fail to realize that goal it can get you down a bit. But I'm a trooper, right? "I never complain" as my wife will often say. Complain about what I think to myself... that I'm lucky enough to have a disease that won't kill me quickly or painfully... that I'm lucky enough to live in a time when I can simply receive dialysis treatments to keep myself alive considerably longer than I would have had their been no such thing? Should I complain that I'm one of the healthiest people on dialysis... so healthy in fact that I can get away with two visits per week instead of three. Should I complain about the procedures that have installed the catheter and the one that set up my fistula? I know a gal who had real problems with her fistula and had a catheter much longer than I did... I have nothing to complain about (Reezie you're the trooper... hang in there my friend).

But here I am a little over a year after starting dialysis, I feel healthy... all things considered, and I don't feel as though I really have any restrictions on life so long as I keep up my treatments, which of course I will do because if I don't I'll have about three weeks to live. So do I have anything to complain about? Yes!

I can complain about the fact that getting a transplant is going to disrupt my life. First there's just the recovery... about 6-8 weeks. Then there's the countless meds I'll be on... most of which will be the wrong med or the wrong dosage at first and only trial and error will resolve the issues along with a few potential hospitalizations as we deal with the process of figuring out the right med treatment for my personal situation. Ultimately I'll wean off of certain meds and find a regular regimen of prescriptions to keep me alive and to prevent my body from rejecting the transplanted kidney. But these will also leave me in a constant state of immunodeficiency not to mention that my diet will have restrictions including not eating sushi, which just happens to be my favorite food to eat.

So... do I really want a transplant? Yes... but I'm in no rush to get one because my life is pretty good right now without all of that trouble. And while dialysis itself is only good for so long and will have its own effect on my body... I am somewhat thankful that being on the donor list means I'll probably get three to five more years of this version of life before I have to give it all up for the one described above.

My name is Bil... and I have kidney disease

Anniversaryization of a thing

So I don't know why humans anniversaryize everything but we do, and I do too I guess.


Today/tomorrow is the year anniversary since I started dialysis. To be honest I was pretty darned scared about the whole thing... the procedure to install the catheter... the first treatment a year ago this morning... the first week of dialysis at  the center in Newburyport... the procedure a week later to create the fistula in my left arm... and the multiple trips to the emergency rooms in the middle of the night over those first few months as I had multiple bleeding issues.

Today its all routine. Almost too routine. Should I be this comfortable with leaving work early three days per week? Should I be this comfortable with two size 15 needles being poked through my ever toughening and scarred skin each session? Should I be this comfortable with my blood being pumped out of my body through a machine that filters the toxins that my kidneys no longer remove? Should I be this comfortable with essentially living life always approximately three weeks away from death?

I maintain a love hate relationship with dialysis. Life is life and I can't argue that dialysis makes this all possible for me. But I know too that dialysis is not a permanent solution and will eventually contribute to the ultimate decline of my health.

I don't mean to sound like a conspiracy theorist but I also struggle with the true intentions of the company that runs the dialysis center. I'm not convinced that they always have my personal interests in mind as they focus on their profits. As a relatively healthy 48 year old man I often wonder if I would be better served from fewer treatments than the traditional 3 days per week. But two treatments per week would cost the company 20 to 30 thousand dollars a year of lost revenue.

A final thought on this anniversary is all of the time I've wasted this past year. Time spent sleeping, watching movies, listening to old 80's music and playing bad computer games like pyramid solitaire. I would like to be more productive with this time and turn it into a gift.. but I'm so lazy... so I can't commit to doing any better in year two than I have done in year one.

Well.. raise your ice teas with me as I drink to another year on dialysis.

My name is Bil... and I still have kidney disease and no prospects for a living donor.

Be my Valentine... its Valentines day afterall

Valentines Day 2014.

Just over a month ago I asked you to "have a heart... donate a kidney" complete with cute photography work showing me holding the same red heart in the location of my own heart and the approx location of where your kidney will end up inside of me if I get your kidney. This was a call to action post meant to move you... inspire you... make you laugh a little... make you think a little... make you want to give up one of your kidneys so I can see another 20 years of life.

I failed.

In the month that has passed only two new inquiries have come in and I happen to know that one of those came by way of word of mouth through high school friends and not through my call to action email. I know several of my closest friends and family have rallied on my behalf and spread the word and some have even attempted to be that person whose kidney keeps me living. It isn't an easy process and the chances are that you are more likely to be disqualified for a handful of reasons including age, weight, smoking, and a slew of other more unique situations that I won't talk about here as they would be considered private.

You don't know that my goal on that day was to shake out 6 people who would be willing candidates because I'm usually not that specific about my intentions... I like to keep it vague. But today I'm coming at you all from a different angle. I want you to know what's going on in my mind. You see it takes about 2 months for the transplant center to run the course with each new potential candidate. So six new candidates means I don't have to bug you all for about a year while they slowly eliminate everyone from this group of six. Unless of course one of these six happens to be a match... in which case hooray for me... I get a new kidney and another shot at living a full life.

Did you know that if it wasn't for my kidney disease I would be a perfectly healthy 48 year old man? I'm very unlike most kidney disease patients in that respect. Most of the folks I see with kidney disease have it as a secondary ailment. Usually they had diabetes first. Several of them are in their 70's and 80's and have already seen their children grow up and go through college and start careers and get married and have children... and that is really all we can truly hope for in life isn't it? The rest is all gravy. The vacations, the toys, the celebrations... they're all part of the fun but none of it compares to the joy of watching our children succeeding in their own ways.

Now I don't mean to suggest that those folks with other disease or who have already had relatively full lives don't deserve new kidneys as much as I do... but I do have so much to live for and so many years ahead of me and quite honestly I'm not going to make it without you.

That's what I want you to think about today. I'm not going to make it without you.

I'm not going to make it with out you.

Without you I won't see Amber marry the man of her dreams and have children.

Without you I won't see Charly graduate from high school and become the famous rap star that he thinks he wants to be (yes my 14 year old son fancies himself a rapper and I have to admit he's pretty good at it).

Without you I won't see my little princess attend her high school prom (does it help you to know that I just burst into tears as I wrote that). I won't witness her experience a broken heart. I won't see her go off to college and eventually meet the man of her dreams and marry and have children.

Without you I am nothing more than a human pin cushion (thanks for that visual Rita Stone) sitting in a dialysis chair for four hours, three days a week so I can stay alive long enough to hopefully find a donor and receive the kidney that buys me another chance.

I know its a selfish request that I make of you. I am selfish. I do want to see all of those things I mentioned come to pass... and I want to get off dialysis... because quite honestly it sucks.

So help me find just 4 more people today to fill out this year... and I'll be back in another year to ask this of you all again if I need to... in fact I'll be back next month if I don't see four new people.

And know this too... I am so very thankful to all of you who attempt to be a donor and to those of you who just simply help spread the word.

And a final note... if you do step up and contact MGH on my behalf... please don't forget or delay to follow through on the steps they ask of you because once you're in their sites they will delay on looking at others until you have been eliminated... the longer it takes you the longer it takes for me to eventually find my kidney.

The number to call is 617-726-6631 or you can call toll free at 1877-644-2860.

Thank you all.

My name is Bil... and I have kidney disease.

New Year... New Kidney?

It hasn't quite been a year since I started my search for a new kidney... you know... the organ that will keep me alive long enough to see my children all get through college (assuming they even go to college) and get married (if that's even something they want to do) and have children (again... if that's even something they want).

This past year has brought many adventures my way.... most of which were not part of the big plan that I had for myself but they are part of the plan now.

The biggies include... the catheter... the fistula... dialysis as a whole... removal of the catheter (thank goodness)... several bleeding episodes... passing out in dialysis and of course that time I farted under the covers and it was so bad that even I had to evacuate the room. (heh heh... I love a good fart joke).

But on a more serious note... several folks stepped up and volunteered to donate a kidney on my behalf. Unfortunately every one of them has either been knocked off the list or for some reason has stopped contacting MGH to continue the process. So now I'm at ground zero.

It's time for me to reach out again and ask all of you who think you could spare a kidney to contact MGH and let them know you're interested in being a potential donor. I would be so grateful for the chance to pee like a real man again. (I kid.. I still pee... my pee just doesn't have the toxins in it that yours does because my kidneys don't remove said toxins... hence the reason I'm on dialysis).

I do make light of this situation but in all seriousness... I need a kidney... I need your kidney... yes you... so if you meet the qualifications then get on the horn and call MGH.

Here is some small print by way of my coordinator at MGH (its actually normal sized print so don't get confused... I'm just calling it small print because that sounds cool)

We did receive a call from 3 other people in the Fall but at this time we are still waiting for these people to send us records or to call us back.    So at this time I am sorry to have to share there are no other potential living donors being actively evaluated for you.  I think it would be appropriate at this time to send out another blast email to friends/ relatives etc.  If you have not shared with all that you are now listed you could include this information.  You have been listed since July 2013 and are ready for your kidney transplant anytime.

Also if you want to be more specific for what would be a good donor candidate for you include in your email that they need to be of a healthy weight, have medical insurance ( even though your insurance will cover the donor expenses) and not have kidney disease such as diabetes.  When they call they will be asked to provide us with a copy of their medical records from a recent (within the year) routine physical.  So they may need to see their PCP as well. 
The number they can call is 617-726-6631 or toll free 1877-644-2860 to begin the donor evaluation process.

I have attached a flyer with more information that you can share with others as needed about being a living donor.

From the flyer:

Answering your questions about Living Kidney Donation at

Massachusetts General Hospital

When someone you know is in need of a kidney transplant, you have the unique opportunity to consider being a living organ donor. Thank you for taking the time to consider such an incredible act of generosity. This handout is meant to answer a few of the most common questions you may have at this time. For more information or to start your donor evaluation please contact us at anytime.

How to contact us: 617-726-6631 or 1-877- 644-2860

http://www.massgeneral.org/transplant/services/living_donor_kidney_ evaluation.aspx

Who can donate?

Live kidney donation is an opportunity for anyone in good health over the age of 18. Family members as well as friends, co-workers, and neighbors are examples of potential donors.

Living kidney donors:

• Have excellent general health
• Do not have Diabetes or Kidney Disease
• Have their own Health Insurance
• Are non- smokers for 3 months pre- donation
• Are of a healthy weight

How long will I be in the hospital and how long will it take to recover?

Most living kidney donors are in the hospital 2-3 days. You will need to plan for 4-6 weeks after hospital discharge to recover from surgery. For part of this time you will not be able to drive or work.

How do they take out the kidney?

The majority of the time the kidney is removed by laparoscopy surgery. This is a minimally invasive procedure with small incisions in your abdomen (one of which is in your belly button).

What if my blood does not “Match” the recipient’s blood - can I still be a donor?

Yes, even if you are not a blood match you can still help others through donation. We could offer you an opportunity to be part of a paired exchange program (swap). This is when you would donate your kidney to someone else so that your friend or family member could receive a transplant from another person who matches best. Additionally, some recipients could undergo special therapy to overcome the blood mismatch so that you could still donate a kidney to them.

What is the long term impact of donation on my health and lifestyle?

If you qualify to be a donor that means the doctors and nurses of the MGH Transplant Team have determined that it is safe and healthy for you to donate one of your kidneys. There are no long term restrictions on your activities or lifestyle after kidney donation.

What are some risks and complications?

Donation of a kidney is overall safe but the common risks that can occur with any surgery are possible in living kidney donation. There is also the rare possibility that the donated kidney will not work in the recipient or in some cases the recipient’s kidney disease may come back. All of the potential risks and complications will be discussed in detail with you as part of your donor evaluation.

What are the financial factors to consider in being a donor?

All of the general costs associated with the evaluation, surgery and hospital stay is covered by the recipient’s insurance. The recipients insurance does not cover transportation, lodging or lost wages. There are programs that can help with lodging and/or transportation.

What if I change my mind?

At anytime in the process if you decide you no longer want to proceed with kidney donation that is your right. Please know that your decision will be fully respected and supported by the entire transplant team.

To contact us at anytime: 617-726-6631 or 1-877- 644-2860

http://www.massgeneral.org/transplant/services/living_donor_kidney_ evaluation.aspx

My name is Bil... and I have kidney disease.

Did you miss me?

I know...  I know... its been a while since you've heard from me, right? Well its not like I've been too lazy to write or anything. Its been more or less by design that we haven't had an entry into my little wimpy kidney blog. You see over the last two months there's really been nothing to report... I wake up every day and go about my business like anyone else except that on Mondays, Wednesdays and Fridays I spend four hours in a dialysis chair with a couple of needles in my arm. Oh there's an occasional issue like a needle that hits a nerve on the way in or an infiltrate (that's when they miss the target and my arm swells up and bruises) but you guys don't really want to hear about all that do you?

I suppose I could tell you about how anything that gets me excited or passionate like a conversation at work or even typing a blog entry seems to kick my uremia into effect and turns me into a Michael J. Fox. More than one person at works has worried that something was wrong with me during a heated conversation. This used to get me a little sympathy as it must be unsettling to watch someone vibrate as they're standing their ground on an issue, but now that everyone has caught on that its just a symptom of the uremia its business as usual.

But the real reason I'm writing an entry today is that I'm on the recovering end of a procedure that I had earlier this morning on my fistula arm. For those just catching up here.. a fistula was added to my arm in June of this year to create a sort of super vein in my arm that is used by my dialysis center for access to my blood which literally gets removed and replaced after passing through a filter. I suppose its a little more complicated than that but that will do for now, right?

So this morning's procedure is the result of some recent issues at dialysis. When I first started dialysis I was using a catheter in my chest while the fistula was maturing (turning my normal vein into that super vein I had mentioned). Then they started using the fistula with size 17 needles eventually increasing the size to 16 and with the intention of of increasing them to size 15. This takes time but by now they should have been able to get me on 15s, which would increase the flow at which they could run the machine that pulls my blood.

As mentioned in an earlier post I'm allergic to heparin, which is a product they use to help prevent the blood from clotting while its out of the body. Since they can't use heparin with me they need that blood flow to be as fast as possible.

More recently they felt the super vein just wasn't doing as good a job as they were expecting, especially considering that its so straight and pulses quite nicely (enter dirty joke here). So they asked me to have it looked at. Last week I saw my fistula-ologist... (there is no such thing.. I just made that word up) and he noticed two things. One was a pinch point near the fistula which reduced my generally 8 mm vein to 3 mm. The other was a tangential vein that was riding the coat tails of my super vein... this tends to happen with veins in the area of the fistula... they all take advantage of the increased flow of blood and start growing to support that flow.

Between the pinch point and the secondary super vein being formed the flow was being prevented and stolen from the access vein and this was preventing them from increasing those needles and getting more flow. So this morning my doctor cut open my arm and removed the section of vein that wasn't necessary and while he had my arm open he discovered a third and removed it as well. Then he opened up my arm above the fistula and sliced it open, then sliced a piece of my own vein that had been removed and stitched it onto the super vein. This will allow the pinch point to open up and provide better flow and will prevent the two coat tail riding veins from stealing flow from the access vein.

The whole process took about 2-3 hours and another hour or so of recovery and we were out the door and on our way home. I may have lied a little when I told the nurse that I was feeling fine... I was feeling hungry and wanted to leave so we could go eat. I was craving oatmeal but it was approaching noon and no one was going to have oatmeal so we decided to go with Meg's craving for a french dip sandwich and we ended up at Joe's American Bar & Grill.

Meg ordered the French dip style prime rib sandwich and I ordered the overpriced meatloaf and we ordered a couple of Arnold Palmers. The drinks came and I had a few sips.. it wasn't particularly great... but it was at least something in my stomach, having not been able to eat since dinner last night. Alas.. a strange sensation followed those few sips. I stepped outside for a breath of fresh air. I came back in a few minutes later and could tell I wasn't going to last much longer. It probably didn't help that I had taken a pain killer just before leaving the hospital. I was going down and there was nothing that I could do about it. I tried to play it off as if it would be okay but Meg saw right through my thin veil.

My phone rang. It was a work colleague calling with an issue. I stepped out again to talk to him and by the time I came back in Meg was walking out... she had cancelled our order and decided to get me home. Thank goodness the nurse had set us up with a special bag... just in case... because two minutes later "in case" happened right there in the car.

At home I was making my way to bed and the phone rang again. I was talking to my colleague again as round two hit... "sorry Steve I'll have to call you BAAAAAAAAAAAAAAAAAAAA." Thank goodness I had that bucket handy.

My name is Bil... and I have kidney disease

Day 153

When I first started this blog I suspected that I would only be maintaining it for a short period of time. Somehow I imagined that I would find and receive a new kidney in just a few months. Here it is five months later and I'm really not any closer than I was back in April. There have been a few people who have been eliminated from consideration since then and there currently always seems to be someone in the process of being considered as the donor and I could hear good news any day... but you can't spend your days waiting for that phone to ring... it would drive you crazy every time it didn't.

When dialysis started up in late May it was a new and interesting experience. Sometimes scary... but generally painless and there was entertainment in the form of a television/computer screen. When I started dialysis it was via the catheter in my chest. Eventually they switched me over to the fistula, but that hasn't been without issues. I've had to switch back to the catheter twice during recovery periods for issues I've had.

So much for generally painless... now that I use the fistula I have to endure the sting of two needles each dialysis session and on occasion... like last night... one of the needles wasn't flowing right so they added a third needle. Ouch. It's not fun being a human pin cushion.

The novelty of dialysis is wearing off. Computer solitaire and reruns of Friends or Seinfeld gets old real fast. I wonder how people do this for years. I wonder how many years it takes before you just want to give up.

The good news... I'm getting this catheter out on Tuesday. I'll need to wait 48 hours after that before I can take a real shower... but to know that a real shower is less than a week away... and that a swim in the ocean is possibly just around the corner... well its the small things that keep me going.

My name is Bil... and I have kidney disease

HIT & Run

So for over two months I've been on dialysis and have had at least four different episodes of unstoppable bleeding. These events have all fallen on the evenings following dialysis. To me it was obvious right away that there was a connection between dialysis and the bleeding. The most recent event happened almost two weeks ago on a Monday following dialysis. Now that they're using my fistula for dialysis it means that each session leaves me with two new puncture wounds to my left arm. On that night one of the two would not stop bleeding and I spent 12 hours in two different emergency rooms trying to get it to stop.

I've really only had 5 sessions where they've used the fistula because the blowout on my second day caused me to lose a week of use and then the episode of bleeding almost two weeks ago has again forced me to lose a couple weeks of use.

On the Wednesday following the last bleeding event my nephrologist, the manager of the dialysis unit and I sat down and discussed the problem. They finally were hearing me and believing me that there was a connection between my dialysis and the bleeding events.

I had suspected that some of the technicians were not paying attention to the special instructions for my case that included no heparin. I assumed on the evenings where I had bleeding events that someone had accidentally given me some heparin. Heparin is an anti-coagulant and I'm not sure why but its often used in the dialysis process. After my first couple of bleeding events it was decided that I would not get heparin during my dialysis sessions.

However... there is a need to fill the chambers of my catheter between sessions with a solution that prevents the catheter from getting blocked and they do this by adding saline with 5000 parts per million of heparin. The amount they add is based on the volume my catheter holds when not in use, which turns out to be 22 Ml & 24 Ml (there's an inny and an outty, two chambers). They also make a solution that is 1000 parts per million of heparin and at first it was decided that my catheter would be filled with that solution instead of the 5000 parts per million version.

But it was also decided that they needed to do a special blood test that they don't normally do. An order was placed and on the Friday following the bleeding event they took the blood sample and ran the test. On the following Monday, this past Monday, they let me know that there suspicions were confirmed. I had Heparin-induced thrombocytopenia (HIT). Basically its like being allergic to heparin... for lack of a better way to describe it.

For me... heparin not only helps reduce clotting it drops my platelet counts to ridiculously low levels. So even though I was only getting 5000 parts per million added to the chamber of my catheter, if the technician was over by even half a milliliter then that half a milliliter got into my system and wiped out my ability to scab over and stop the bleeding.

I'm officially off the heparin now even in the chambers of my catheter. They'll take another sample of my blood this Monday and test it to make sure my platelet count is back up to at least 140, then they'll put me back on the fistula. Nothing is ever simple... but its certainly always interesting.

My name is Bil... and I have kidney disease.

Another Day

It's been a couple of weeks since I sat down to write a post. Not for lack of anything to write about, but more because I've just found it hard to find time to sit and write. Life feels very busy at the moment. My project at work has been demanding of my time and with dialysis eating into my weekdays its harder to hit my schedules.

So what has gone down over the last couple of weeks in the world of my kidney disease?

1. Finally was officially added to the list at MGH.

2. My fistula blow out recovered and we started using that instead of my catheter.

3. This past week I had a bleeding issue after one of my dialysis sessions and I ended up spending 12 hours in two different E.R.s resolving the issue.

4. My body bruises now so easily that I'm covered 3" diameter bruises on my arms and legs.

5. MGH has started the process of working up the next potential donor.

6. My dialysis center is trying to figure out why I keep having these bleeding episodes.

So which of these are worthy of writing about? I could use this opportunity to remind anyone who wants to volunteer to be a kidney donor on my behalf that they will need to contact MGH directly to get that process started. If you contacted Lahey while I was under their care that no longer counts... it has to be through MGH. The number if you are interested is 617-643-7193.

I could tell you all about the person being worked up by MGH... but I'd prefer to just let that all run through until they find an actual donor... and then at that point, if I had that persons permission I would write about him or her. For now it should be enough to know that I'm so appreciative of those who have stepped up. I know this is no small favor I ask and that you would be willing to do this for me... well no words could ever truly capture what it means to me.

I could tell you about my bleeding episode but really I've told that story before... haven't I? Do you really want to hear it again? And until my dialysis center resolves the problem with the bleeding episodes I can't say much about that.

What more can I say about the bruising... it happens. I have to wear a blood pressure cuff throughout my dialysis treatments and I believe even just wearing that cuff has caused bruising.

Well that's all I've got really.

My name is Bil... and I have kidney disease.

Dentally Speaking

Sorry now if this post is kinda gross... please don't read if you're easily skived out.

So I'm anemic as a result of my kidney disease... fairly common. Early on in my catheter days I had a few bleeding episodes that landed me in the emergency room over night. One thing I noticed is that it seemed to happen after dialysis sessions when they gave me heparin... an anti coagulant. So I mentioned it and we dropped the heparin from my routine.

Yesterday I had a long overdue dental cleaning prior to my dialysis. Although there was plenty of bleeding during the cleaning, I left there without any kind of significant bleeding. An hour later I was in dialysis and I'm not certain but I believe someone may have given me heparin yesterday.

Last night I brushed my teeth before going to bed. As you might expect following an intense dental cleaning... the brushing caused a little followup bleeding. Unfortunately the bleeding just never stopped. I tried to just ignore it and hope it would go away before waking up this morning... but instead it got so bad that I awoke around midnight with my pillow and face covered in blood.

I got up and cleaned up. Looked at my mouth and the blood was trying to clot. This led to little gelatinous blood pillows all over my mouth and wrapped around my teeth. It was.. gross.

I brushed my teeth again to try and clean it up but that started the bleeding again. I went back to bed but kept waking up every hour or so and returned to the bathroom to do a little more cleaning of blood pillows from my mouth.

This morning it appears to finally be returning to normal but I still had some follow up cleaning to do in some hard to reach places. Hopefully this will be the last of it... tough night when you can't get a full night of sleep and have to keep cleaning up blood from your face and mouth.

My name is Bil... and I have some weird shit that happens to me due to this kidney disease.

Bump in the road

The first fistula session went pretty well. Only one relatively small needle used in the arm. It really didn't hurt at all so my nervousness was unwarranted. I need three consecutive successful uses of my fistula with two needles before I can have the catheter removed.

My second fistula session didn't go quite as well as the first. The first needle went in pretty much the same as the first session... but the second needle missed its mark. Initially this led to the need to "adjust" it and that was less than fun. Then as they started to dialyze my blood the machine kept beeping. Something wasn't right. They kept trying to adjust the position of that needle and my arm to get a better result. Nothing worked. Then the technician touch my arm and asked me if that hurt? It did and I said yes. Then she started moving quickly and not speaking at all. She just went into serious mode and I could tell something wasn't right although I could only just sit there and wait to see what was going down. I knew better than to ask.. I was better off being dumb.

Within three to four minutes it was all over. I was no longer being dialyzed via the needles... but through my catheter instead. The needles were still there and an ice pack was resting over my arm and the technician said... "Let me explain what happened".

Basically a lump started to form adjacent to the second needle and the technician recognized this as some kind of problem and so she made the command decision to stop the process via the needles and get ice on it as soon as possible to prevent the lump from getting worse and to reduce the bruising that would follow.

So we'll try again on Monday and see how it goes. Meanwhile I've got this lovely bruised lump in my arm that I need to keep icing through the day.

Nervous

Monday of this week I was given the thumbs up on switching from my catheter to my fistula at dialysis. Today will be the first time we try the fistula. Now the way this stuff works is that there are two ports... one outty and one inny. Until now both of my ports are via the catheter, which has been surgically connected to the base of my neck or upper chest if you will. When the fistula is fully functioning it will mean that two needles will enter my arm on each dialysis day, but as we start the process today they will use just one needle as the outty and keep the catheter as the inny.

These needles are not as tiny as the needle used to draw blood at the blood lab. In fact they're quite large as you can see in this photo.

(click here to listen to the song running through my head today)

Today they'll use one of the "smaller" needles to start me out because we need to work up to the larger size and we're using just one for the same reason... we need to work up to two. I've been told these needles hurt. I've been given three options.

1. apply a cream to my arm about an hour before dialysis that will numb the area they insert the needle. For some reason they require you to then wrap your arm in plastic wrap afterwards... perhaps to prevent it from getting onto other parts of your skin and numbing those areas.
2. use a spray that numbs the area just before getting the needle. I'm told this hurts more than the needle.
3. suck it up... grin and bear it.

I'm not too keen on any of these solutions but for today I'm trying option three so I can judge the kind of pain we're talking about. 

I hate needles. I can't watch the needles being inserted when I have blood drawn. The idea of something entering my body just freaks me right out. Now knowing that I'm going to have a large diameter needle pierce my skin, I have to admit, has me a bit scared.

They tell me it will be about two more weeks at least before they can remove the catheter. The short term goal here is to do whatever needs to be done to get this catheter out of me. This is what I will focus on as I feel the pain of that needle puncturing my arm today and for the next few visits as they increase the size and the number of needles to two. Not sure I'll be able to use the grin and bear it method beyond today... the cream may be my eventual solution. But who in their right mind would choose the spray after they've been told it hurts more than the needles.

My name is Bil... and I'm nervous for the first time since this whole thing started.