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