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.

parting will be such sweet fishy sorrow

So this week included my work up at MGH. Initially I thought it would include all the same testing I had on my full day work up at Lahey a few months ago. Most of which was nothing all that difficult, but for that darn stress test... that was not fun. As it turned out I only had to do half the blood work (11 vials) and none of the other tests. So the rest of the day was all listening to a lecture about kidney transplant and then meeting with the team at MGH one at a time, interview style.

It will be two weeks before I hear back as to whether or not I will be accepted as a patient at MGH. I have no reason to believe I won't be, after all... if Lahey would have me why wouldn't MGH, but there are formalities to it all and so I must wait for them to meet and discuss me as a patient.

I did learn a few new things at MGH. For example that they are doing some cutting edge stuff there that few others are doing. This includes an interesting approach to certain qualifying transplants involving half match siblings. Half match means that at least three of six antigens are identical. We all get six antigens from our parents, three from each parent. Siblings have something like a one in four chance of being a half match, but the likely hood that two non related people will be a half match is pretty low as there are literally thousands of antigens out there.

If your donor is a half match sibling MGH offers an option where they would not only transplant the kidney but would also transplant a small amount of the donors bone marrow. This some how eliminates the need for certain rejection medications. I don't know that my donor will be a sibling or that my sibling would be a willing participant in such an option, but just that they are doing this kind of cutting edge stuff makes me excited about the fact that I've chosen MGH over Lahey.

There was another new piece of information I learned at MGH... this one is actually a bit of bad news and I've spent the last few days pondering how exactly I should deal with this unfortunate bit of information. It turns out that following my transplant I won't be able to eat my favorite food ever again. Sushi. Yep... no more sushi after the transplant. I think sometime between now and the transplant I'll have to have a big sushi party. Maybe an all day sushi affair. I can not tell you how sad this makes me... nothing can ever replace the full on food joy I receive from eating sushi. People try to comfort me by saying things like: "Well you can still eat California rolls" but come on.. that shit's not real sushi.

My name is Bil... and I have kidney disease and a hankerin for some sushi.

Layman's Terms

Folks in the medical industry have a different way of talking than the rest of us. In recent months as my doctor visits increased substantially I found that each doctor, nurse or medical technician that I would deal with in regards to my kidney disease would ask a similar variation on a single question. usually it came out something like this:

"What brought on your kidney disease?"

Now to me, the simple layman, the question I heard was "what caused your kidney disease" to which I would look at them with my face half screwed and say (in my head) "your the fucking doctor... you tell me." What really would come out of my mouth was something to the effect of "Life" or "I don't really know."

At some point during the appointment with them they would be reading through something on a computer screen and say "Oh, you have IGA Nephropathy." Again I'm thinking to myself... "dude ya.. why the F do you think I'm even here right now?" But of course my politer side would actually just say yes.

One dude even printed out this whole report on IGA Nephropathy and handed it to me as if I had no idea about the type of kidney disease I had. And therein lies the difference between medical folks and laypeople. While we hear that first question as what caused your kidney disease... to the medical person it really means "what kind of kidney disease do you have?"

It was frustrating for the first few weeks while I got used to this... but now that I know better and have learned to speak at least a little mediceese... I always answer that question with a confident IGA Nephropathy. Not that I know much about it or how I got it.. but at least I look less like an idiot than I did in those first few weeks.

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

Bruite and Thrill

I arrived at my sister's house the other night to join two of my sister's (Tricia & Kathy) for dinner before Kathy makes the great escape to Florida next week along with every other member of our family except Tricia and myself. I hadn't seen Tricia's kids in quite some time and as the goofball uncle I decided to play a little trick on them. When I arrived I went into the room they were all sitting in and told them I learned a new trick. I grabbed the chord to the lamp and told them all I could pull electricity out of the chord. I put my fistulated (ya I just coined that word) wrist out for them to touch and had each of them rest their hand directly on the area of the fistula. The reactions weren't as great as I had hoped although the girls did giggle a bit. I guess they're a little immune to my silliness after all of these years or perhaps as they're all growing up.

So what is it that is happening at the point on my wrist where the fistula has been added? Well I'm no expert and in an earlier post I suggested that a piece of vein was added in that area but I have done a tad bit of research and I have a bit more of an understanding of what is going.

So I believe fistulas occur naturally within our body, particularly in diseased areas and an abnormal passage forms between two organs or parts of the body. I'm guessing that doctors, upon discovering fistulas, realized they could create their own and that they could be useful... as an example in the case of dialysis.

What they do is they split a vein in the arm and then attach it to a deeper artery. What happens naturally as this heals is that the vein takes on characteristics of the artery and becomes a sort of super vein. As we all recall from 7th grade science class (ya right) an artery carries blood from the heart out to various parts of the body and veins carry the blood back to the heart. When the vein is tied to that artery the turbulence created by the opposite direction of flow (or so I believe) is causing a vibration that almost feels electric. This is called in medical terms the thrill.

When I sleep at night my arm often finds its way onto my pillow and typically I have an ear on that same pillow. Whenever this happens I hear the pumping of my blood through my body by way of the fistula. When I visit the doctor who performed the procedure that created the fistula he always listens with a stethoscope. The sound he is listening to is similar to what I hear through my pillow. The medical term for this is called a bruite (pronounced broo-ee... it must be french).

After visiting with Tricia's kids I made my way to the kitchen to see Tricia and Kathy. They both felt it too. I won't tell you about the conversation that followed but I will tell you that Kathy mentioned if she got a fistula she would ask them to amp it up a bit. Think about it.

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

the big switch

Dear friends, family, acquaintances and strangers (and Larry the toll booth operator)

Today, June 14th, 2013, I made a decision to change my transplant health care from Lahey Clinic to Mass General Hospital. Although the people at Lahey could not have been kinder to me, I was less than happy with their ultimate care. There were a few incidences where they sorta dropped the ball a bit and that was a few too many for me. I have a serious health issue and I need a serious team... I need the best possible team on my side.

This decision like all that I make relative to my kidney disease was not an easy one to make. I wasn't sure that I wanted to ask everyone who already volunteered to have to start the process all over again. But in the end this is about the best possible care I can receive.

If you are still interested in volunteering to donate a kidney on my behalf please call  617-643-7193 and ask for Jobanna. If you've already been turned down by Lahey that's not a reason to not try again, MGH has their own guidelines and though in some ways they'll be tougher they are also a cutting edge facility and some of what I've heard about the things they're doing are blowing me away. They actually have been involved in a 30 pair match... imagine 30 different kidneys being transplanted around the country at one time... fricken amazing.

I know this is a pain in the butt... but its important to me that I receive the greatest care possible. Thank you for your support and for volunteering to give a little bit of you to help extend my life.

My name is Bil... and I have great friends for doing this for me.

Crazy Week

Last week included the addition of a fistula placed into my left wrist... which when you place your hand on it... feels like a kitten purring. Then Monday towards the end of dialysis I started bleeding from the catheter wound. This would be the second time this has happened and the first time had me spending several hours in the emergency room at Lahey Clinic. On this second occasion I spent the first half of the night at the emergency room at Anna Jacques... hoping they could stop the bleeding. After laying there with a ten pound sandbag on my chest for an hour the bleeding still hadn't stopped so we opted to wrap my upper body in gauze and ace bandages. Turning me into a mummy for the next few hours while I attempted to sleep. I had two appointments in the morning at Lahey Clinic so we were thinking that this mummy wrap would get me through the night to those appointments where the local surgeon could take a look at the issue and resolve it.

I got about 2 hours of sleep before waking up to a bloodied shirt and pillow. the wrap kept the blood from seeping down, but the blood eventually soaked the gauze and the gravity took it over my shoulders and down to the bed. I got up and added more gauze and ace bandages to the mummy wrap, then drove myself to Lahey Clinic's emergency room where they stitched me back up. Second time in less than a week.

By the time I got home Tuesday morning I was so exhausted I slept Tuesday away and awoke Wednesday to feeling better than I have felt in years. Was it all that sleep, was it the dialysis starting to work its magic, was it the loss of all that blood, which is by the way tainted blood as my kidneys no longer clean the toxins from my body, and the new blood my body made while resting all day Tuesday was cleaner and so all of that combined with the dialysis magic lead to a general feeling of semi wellness relative to my last three to four years? I don't know... but I'll take it... it felt good to feel good (just call me captain obvious).

I decided to skip dialysis on Wednesday. This is not a decision I made lightly. My chest is quite raw right now. All the bandages being put on and pulled of. All of the cleaning that goes on in the general area of my catheter. All of the tugging at my catheter to hook me up to dialysis and remove me from dialysis. And all of the stitching that has gone on in the area of my catheter. Not to mention that I believe I'm allergic to all the adhesives on those bandages that keep getting added and removed. I really felt like I needed a break. An extra day to heal between dialysis sessions. The center was adamant that I not miss my session, but I talked to the Nephrologist for the center and she backed me up. She agreed that it would not hurt for me to miss a day and try to heal.

I also mentioned to the Nephrologist that I had a theory about why I keep bleeding. You see at the end of each dialysis treatment they shoot a little heparin into the catheter to prevent clotting. Well I'm anemic as a result of the kidney disease and I already have a hard time clotting and now they're adding something to make clotting that much harder... all while tugging at an area on my chest that could use some time to heal. I asked if we could skip the heparin for a few treatments and she agreed.

This afternoon will be my first treatment since Monday. Lets see if I end up in the emergency room again tonight. I'm not really superstitious... but my fingers are figuratively crossed.

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

the long day

5:30 am Thursday... standing in front of the bathroom mirror I see a giant red dot in the middle of my tee shirt. My immediate thought was that somehow my catheter is draining blood and I'm going to bleed out. But then reality suggests that bleeding out would have meant that I'd still be laying in bed... and probably dead.

I called my dialysis center and they told me to come right in. I waited there for about an hour as they got all of their first shift patients setup into their chairs for treatments. Then they inspected my bleeding chest, removed all of the old blood soaked bandages and redressed the wound. I was home just about 7:00, but as I tried to clean up some of the dried blood on my chest I noticed I started dripping again. Back to the center again... this time they said there's really not much they can do about it and it might just need some time to clot. They told me if it happened again.. just go to the emergency room.

Knowing I was heading down to Lahey Clinic I opted to just add some taped up paper towels to my chest to help absorb any blood flow. By the time I got to Lahey at 9:45 that towel had soaked through too and my newly designated dialysis shirt... a faded yellow Hawaiian shirt, was now sporting a few lovely red dots above my chest wound. I pointed out to the woman in the waiting room my issue and she had me brought into the ambulatory surgery pre surgery area to again remove the blood soaked bandages and attempt to repair the leak. They left me laying there because it seemed to bleed more if I was sitting up or standing.

Two hours later I was in surgery having my fistula added. I awoke from this procedure to a handful of medical personal standing around me and letting me know that they were going to get me a number to call to file an official complaint. I was completely confused.. had no idea what they were referring to. I asked them why and they said because of all of the issues I've been experiencing at Lahey over the last two months. Apparently the drugs they gave me to knock me out made me chatty and quite honest. I guess I told them all about how I've been really disappointed at the poor level of care I've received. I have no idea what I said... but they were all very concerned on my behalf. I felt pretty stupid sitting there guilty of having given them all a little "what for" but having no idea what I said.

Back in recovery I was given the run down of the things I would probably feel and things I would need to do to care for my new fistula and how my chest wound had been attended to and should be fine now as well. Meg and Annie showed up between 3:30 and 4:00 to pick me up. We left and started traveling north on 95 towards Newburyport when we decided to stop for burgers at Five Guys... none of us had eaten there yet. On our way there on Route 1 in Saugus I discovered the wound was bleeding again.. this time leaving a big red patch on my dialysis shirt. We stopped in to a CVS... bought our own gauze and patch materials and swapped out the bloody dressing for a new clean one. Went to Five Guys, ate our burgers.... those tasted how I want every cheeseburger to taste. Then headed back to Lahey in Burlington to get this bleeding catheter area fixed once and for all.

In the emergency room until 9:00 pm... they finally had decided to stitch it up and not just keep applying bandages to help the spot attempt to clot. Home at 10:00 pm... it was a long day.

My name is Bil... and I have kidney disease... and think I'll take the day off from work today.

23 Hours

So the decision was made on Tuesday of this past week that it was time to start dialysis. I was scheduled for a 23 hour observation on Thursday into Friday. My day on Thursday started with a 1:00 arrival at Lahey Clinic and a 2:00 procedure to install a catheter into my upper right chest, just below the neck. This is my new port to my robotic kidneys... A.K.A. the dialysis machine.

I have no memory of the procedure... the drugs had me off in sleepy land. I awoke to the most incredibly itchy scalp... insatiably itchy... back and forth my hand traveled from one side to the other but nothing satisfied that itch. Turned out i'm allergic to one of the drugs they gave me. My head was covered in hives. Still in a semi state of hallucination I felt like what I imagine is how it feels to be a caterpillar exiting the cocoon. At first my entire body was covered in blankets. I think I asked the doctors if my head was under blankets... I couldn't quite grasp where I was or why or how... I only knew I was covered in blankets or at least suspected as much and knew that my head was itchy beyond the ability to scratch it to satisfaction.

I remember being asked not to do something that I was doing.... but I have no memory of what it was that I was doing. I noticed too that I had the most incredible case of jimmy leg I've ever had. There must have been something to that because they strapped what looked like inflatable swimming devices to my legs and then hooked them into a little machine that would blow them up and then release the air, essentially massaging my legs through a series of  pressure applied in various chambers of the inflatable devices.

Eventually I returned to reality and was brought to a room where I would spend the night so I could receive my initial dialysis treatment in the morning. Having gone without food since dinner the night before I was incredibly hungry. I ordered up some dinner, ate, watched an episode or two of Arrested Development on my laptop and then attempted to sleep the night away. Unfortunately the nurses were in and out of my room all night... poking, prodding, inspecting, talking to me, changing my bandages and generally annoying the heck outta me.

Breakfast at 7:30 while watching another episode of Arrested Development, it wasn't long before they moved me down into the dialysis room for my first treatment. As they wheeled me down the aisle towards the room I could hear the faint cries of a person in distress as it rose in a crescendo of desperation before tapering off to a faint moan. This pattern repeated for the next two and half hours. My entire first dialysis session was played out to the sound of Mr. Flynn crying for help. I mostly tried to ignore it while I watched a few more episodes of Arrested Development.

Back in my room I had hoped to be released almost immediately. The nurse told me that was highly unlikely... so I ordered up some lunch and watched another episode of AD. while eating, the nurse came in and said "I lied, it looks like they're releasing you." Alas... this news came 15 minutes too late... Meg couldn't leave Newburyport and get to Burlington to get me and get back in time to get Annie at the bus stop... so it was decided I would have to wait until after Annie was out of school before I would be picked up.

Tired of all that AD I just closed my laptop and my eyes and slept the next couple of hours away. Meg arrived to pick me up around 4:30... just in time for the evening commute. So we trekked over to the Burlington Mall and had some dinner at the Cheesecake Factory.

And so goes the day in the life of a regular guy with kidney disease.

My name is Bil... and you know what I normally say here. (wink)

It aint all pretty

I generally don't let all this kidney disease stuff bother me... I'm too busy living to be worried about being sick or even the likelihood of dying young, which I don't really expect to happen anytime soon. People call me brave, but I suspect I'm more likely just oblivious most of the time... too dumb to realize I should be nervous or worried about anything. Ignorance is bliss they say, right?

Today I go in to Lahey Clinic for my catheter, which will be used to hook me up to the dialysis machine as I receive treatments... which will start tomorrow. I found out yesterday that I can't get the catheter wet... that there's a risk of infection... the kind of infection that will make you real sick real fast. The doctor I met with inquired about why I was choosing a catheter over a fistula... as if someone had even asked me previously which I preferred or explained to me the real difference and the risks associated with either.

For those like me who are oblivious and have no idea what a fistula is... its essentially a vein they add to your arm and it takes about 6-8 weeks to mature (to be ready for use). It is used as a connection to the body through which the dialysis machine can be connected... so you don't need a catheter. Unlike the catheter... once its established it has practically zero risk of infection and its okay to get it wet.

WTF?!

You mean to tell me that three months ago when you were all telling me that I'll probably need to go on dialysis soon... you could have set me up with a fistula and starting tomorrow I could already use it for dialysis and I'd still be able to take showers during this upcoming stretch of 90 degree weather and I'd also be able to take a refreshing dip into the ocean... but now I need to wait 6-8 weeks because no one thought of this sooner?

I repeat WTF?!

So I'm not completely oblivious. I get it... you fucked up... the kind of fuck up that if it were me at my job I might find my ass out on the street looking for a new job. Some shit just bothers the heck outta me.. and Lahey Clinic has been on a roll with me recently and its getting under my skin... and that's not good... you won't like me when I get mad... it aint pretty.

My name is Bil... and I have fucking kidney disease... (now pardon me while I try to go calm down)

Donor One

Not all things will go as planned... in a perfect world donor one's blood and mine would be swimming around in a petri dish right now... riding the waves... maybe with drinks in hand with little umbrellas in them... but by the time donor one's day was over on wednesday there was a concern. Nothing we can do about it. It is what it is.

Donor one, thank you for your generosity. Thank you for the herculean efforts you've gone through on my behalf. I know the reason you made the choice to try and be a donor, and I'm touched by your selflessness. I  like to think that I would be a better person for having a little bit of you in me. There is nothing I could say to truly express my appreciation.

Now on to donor two and maybe three or four.... there's no guarantees... just another day on the quest for a new kidney.

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

P.S.

Added this little snippet from Donor One:

For anyone that has filled out the form, but put off phase one or phase two, please please follow through! I made it through to phase four, and it was a breeze. The donor coordinators are extremely helpful and organized, and there is nothing invasive involved in the testing portion. Thank you to everyone who has already taken action, you are all so brave. And for those of you considering, you will be surprised at how any fears you may have are completely addressed and relieved. Did you know that if we donate, and heaven forbid ever need one, we shoot to the top of the priority list! And there is NO increase in risk of renal failure, no medications to change in diet. You will live just as normal of a life post-donation. Heck, may people only have one kidney at birth and never know. and after all, this geek is worth saving!
xo 
j. 

Symptomatic

This has been the first real rough week in the history of my kidney disease. I've been noticing more and more a general feeling of not being well, but most of it has been kinda like that third or fourth day after you've been sick.. and you're feeling mostly well, but still feel worn out at the end of the day... but you carry on anyway.

Three of the last four nights have come with headaches, two with vomiting, one with a few hours in the hospital. I'm more tired and need to sleep longer. I've been late to work a couple times this week. At my doctor's appointment yesterday my nephrologist said she's willing to work with me for as long as she can on keeping me off of dialysis, but if it were up to her she would put me on dialysis today. officially my kidneys are now at 8% functionality.

We did a simple little test of holding my hands out in front of me with my palms facing out and we watched my fingers twitch. Apparently this is a sign of my nerves tweaking over the uremia (an illness that accompanies kidney disease). Anemia is another problem that comes from kidney disease and that has been robbing my muscles of oxygen for probably more than two years. Those who know me on FB might recall an incident while out bike riding and geocaching where I just had to stop and lay down and rest... I believe that to be the first real anemic episode related to my kidney disease. I also did a hike in February of 2012 up Mt. Chocorua and can recall as we approached the lean to where we were spending the night that I had an overwhelming desire to quit because my legs just couldn't go on. I think it took me 20 minutes to make it that last 500 feet.

But over the last four years of having kidney disease I never really felt any significant symptoms until this week. I'm not sure how I will proceed over the next two weeks... but I'm thinking my goal of not going on dialysis prior to my transplant may be a goal I no longer can afford to maintain. One unusual benefit of being symptomatic... once asleep, I tend to have better sleep than I have over the last four years... unfortunately this is due to a lack of getting up to urinate... yet another symptom of late stage kidney disease... reduced urination. oh boy... I gotta make a decision here.

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