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.