Brad Pitt is an Alien & Jen is Nervous

I got this comment from Jen:

I’ve tried to sort out your blog, jumping from 2009, to 2010, to present day. You’re on peritoneal dialysis now, after having been on hemo? Am I understanding that correctly? I’ve just visited the hospital today, to set up an appointment for a peritoneal catheter surgery. Will peri dialysis steal the good days and the normalcy and urine production I still have? I’m overwhelmed and thinking that if I feel “ok” now, why would I ruin that by putting the catheter in now? I’m at about 13%. I’m tired.. years and years of being tired.. but tired and normal feel pretty good considering what might be in store for me. I’m scared. Any advice would be helpful.
Thanks a lot,
Jen

And this one, later, because I lazily write a blog post each decade and I’ve kept her waiting unneccessarily:

I’ve been hoping you’d post again. I’m just starting on PD and I’ve heard so many horror stories that even though I have my catheter in place, I’m putting it off. Could you talk on the subject of whether or not you’ve had pain with your exchanges, if you do manual vs. machine, etc.. I’d like another perspective. Thanks so much, your blog is important.

Yes, Jen, you have sorted out my travels in Dialysisland correctly. Thank you for commenting and complimenting, I’m humbled.

I’m sorry you’re going through all of this, I understand most of what you are feeling. We’ve all been through this stage, us kidney disease folk. That “okay” feeling you have, it’s not real. I direct you to, almost 25 years ago, the first time I dialyzed. Back then, they put in my temporary access (j-cath) and monitored progress by having me lie in a hospital bed for each treatment until my fistula healed! Can you imagine? It all seems primitive now, since the current m.o. is “kick ‘em out quick!” Anyway, I digress.

My memory is I was very into crossword puzzles back then. I was also into the final year of college, in a program that required a thesis not unlike a Masters program. And I was failing. At both. I needed dialysis, but didn’t know it. I could ride my bike to school, I could go to class, I could even go to parties and still make it to school the next morning. So I thought I was fine. When I finally got onto dialysis I remember sitting in this hospital bed doing crossword puzzles. My brain had lost its power … until I dialyzed. After dialysis began, I was way more “okay” than I had previously been. There was an improvement. I graduated with straight A’s that year. My crossword skills, well, they still need work.

As for urine production. I don’t believe that having an access placed will affect your output (which I guess by now you’ve probably figured out for yourself, Jen). If I understand correctly, it’s the dialysis that ruins your pee-ability. The kidneys shut down because hormones present pre-dialysis cease to operate post-dialysis – the brain doesn’t think it needs kidneys, so it takes a break. But that’s not true for everyone. There are plenty of people who make urine while on dialysis, lucky bastards. I do not know the official chemistry/biology of this process, so you should ask your doctor. Frankly, you’ll probably lose some output eventually and you’ll have to watch how much fluid you take in. This process is much less arduous on PD, so you’re headed in the right direction. I drink basically what I crave in any given day, remove that small amount each night and move on. As with most things in life, gradual gains are gentler than forced progress. Which is true for your kidney failure: if you had lost all your kidney function in one day, you would have noticed, but you’re losing it slowly. I point to aging as another example. I look just as good in the mirror as I did at 17.

Then there’s the PD itself. I doesn’t hurt me. It never did, even in the beginning, when they told me: it’s going to hurt. I do my PD on the machine and I do manual exchanges; I feel nothing. At the very end of a drain, the catheter inside the belly can often come to rest on tissue, instead of floating in solution. For some folks, this hurts. For me, it’s the built-in signal that my drain is complete – a mild pinch. The only place I have regular pain is at the exit site for the catheter. For some reason, I cannot get the irritation under control. Some days this is very, very annoying. (Also note that I have either always had, or have built up some kind of hyper-human pain resistance. What hurts most people, vaguely bothers me. It’s a gift. Not enough of a gift to make any money from, naturally, but for a dialysis patient, a gift. I’ll take what I can get.)

Now. About these horror stories. I’m pausing here, in my mind, thinking of why anyone in their right mind would tell someone something scary about a procedure or treatment. What’s that all about?

I think I know. I go on Yelp and review businesses fairly often. When a place is truly, truly exceptional I might write them up. But if a place is remotely bad, I’m all over it. We complain as humans. We like it. It’s my opinion we ought not to live this way, instead finding the good in everything. (Yes, I have some work to do in that department. Back off, my loyal readers. These things take time.) Look, Jen, you’ll not find any shortage of people who have heard about some sister’s dad’s aunt who got wrapped up in a PD tube during an ill-concocted bunjee jumping attempt, and died. There are also stories about Brad Pitt’s true identity as an alien life form. There’s no evidence of a PD strangling. I’m not going to get into the Brad Pitt thing. But someone told me …

Here’s a success story for you, Jen, may it help balance your perspective about PD. It’s mine. You know, my family very much wanted me to start PD. So much so, they felt an intervention was necessary. I didn’t want to go to PD–everything I’d heard (yep, same deal) was negative. Patients get peritonitis; a “clean room” is required for any feeling of safety. If the patient isn’t at a 34.5 degree angle while exchanging, the left ear will turn blue. Blah blah blah. Eventually, I agreed to “try” PD, totally committed to not succeeding. It snuck up on me, but before I knew it I was preaching PD to everyone I knew. May this be your experience, Jen. And yours, fearless reader.

Jen is suffering from kidney failure. Kidney failure sucks. So there’s no rosy picture I can paint for her, or for you. My best advice is to seek the help of a professional therapist. Because they’re professionals. A dialysis patient probably has a primary care physician, a dietician, a nephrologist, a surgeon, a social worker, a vascular surgeon, a transplant coordinator and a dialysis nurse. Why on earth people shun the help of a psychologist or psychiatrist is well beyond me. So don’t shun it. Fears about the unknown future (is there another kind?) are totally normal, unraveling them is difficult – get some help. Most places have therapy available for little-to-no cost. Best value, by the hour, you’ll find in healthcare today. In my humble opinion.

I’m new to this. Answering questions from other patients is never how I envisioned this blog. Luckily, life has its own path – following the path has rewards. Keep following.

Back to the Beginning, A Mental Reunion

Today I did something vaguely out of character, I wrote something online which I may regret. I haven’t been able to get it off my mind–and I haven’t written a post for a while–so, I land here. With you. To write a blog post. Because I haven’t written for a while. Subsequently, you will be subjected to a longer than usual post. It has a good ending.

My 25th high school reunion has reared its ugly head my direction. I know, right? Now you’re on board. Nice. While the sentiment of this event is sweet and certainly has its “pay-back” potential … I won’t be going. Number one, I am an urban city-slicker-type and my final two years of high school were spent in rural New Hampshire. Very pretty. Kinda boring. Just for me, mind you. It is certainly a place with merit: clean air, fall leaves (they are just leaves, you know) and wicked-good laws for the same-sex-marrying-type. Anyway, it’s nice. I was there this decade once already, so I feel like going on this trip might’ve been overdoing it a bit. Number two, it’s two freaking days after Christmas (a young woman complimented me on my blog, but pointed out my language can get a little rough–and so the previous “freaking” is for her). There are four of us, we familial travelers. Transcontinental flight. Let the cash registers rejoice the sound of the holidays: ca-ching! Plus, even though the young lady organizing the event is quite nice, she announced the event date well behind the 60 day, save-a-lot-of-money-airline-rule. So, in summary: Christmas, debit card, family, uh, no. I could go by myself on the cheap, but what’s the point of going when the hot wife with tattoos and spectacular progeny are the real show?

Number three: high school sucked eggs. Ostrich eggs. Big, hairy Ostrich eggs dipped in lemon juice, served on toast with Vegemite (apologies to Australia, but yeast paste?). Let me give you a brief synopsis:

In California, during my Sophomore year, I was freaking (2!) awesome. Best year of my life, maybe. I went to school on the infamous Melrose Avenue. I wore vintage blue suits with blue suede creepers. I had orange hair, was on the track team and was class president. Two terms, biatch. orangeI dated private school girls, for crying out loud! I’m still dating one today (no, not that way, she was a private school girl back then, sheesh).

Then, without having the sense to see what I was about to put myself through, I landed in NH to complete my under-under-graduate work. My mother took me to the world’s worst hair-dresser, on the way home from the airport, no less, and had me shorn of my “ridiculous hair.” Looking back, I realize the irony; my mother was living, let’s just say, an alternative lifestyle at the time, yet still found a way to strip me of mine. I pause having really just realized this for myself … jeez, mom. (I love you, mom. It’s grandma’s fault.)

That was before I rested even a toe on the soil of Merrimack Vally High School. Recall for a moment the scenes from “Dazed and Confused” wherein pick-up trucks are donut-ing in the parking lot and freshmen are running from shit-kickers worn by trucker-hat-wearing-country-thugs You’re close to the idea. (Please understand, these were not the “ironic” trucker hats meant for Ashton Kutcher’s noggin.) The guys, really except for two exceptional friends, either bumped me in the halls with their shoulders or hazed me. The girls, well, of course there were a couple of nice girls who gave a shit about me, but on the whole it was more than 3,000 miles between me and the free-wheeling days of California.

Back to the reunion. 25 years later, in front of the world on Facebook, a reunion group request is made:

Who is coming and how many will you be?

I want you to know I asked my hot, tattooed L.A. wife if it was okay if I responded in the following way and she said it was. So I’m absolved, at least around here. Here’s what I wrote:

Thanks very much for the invite, my family and I will not be able to make it this year. I never really liked going to high school anyway.

Yup. Right there on the reunion’s campaign headquarters. And here, finally, is the part that’s really bothering me: I still feel guilty for my milquetoast RSVP/dig. I mean, who gives a crap if I didn’t like going to high school? Nobody. That’s who. Because most people didn’t. And it’s just a half-hearted comment on Facebook, how many of those do you suppose exist in a day? Still the guilt persists–I’m a nice boy under it all. I have my wife’s approval, so let’s get to global absolution, because I think I deserve it.

Put aside all the crap I had to change about myself just to survive in remarkably hostile territory. I still lost my kidneys. That’s right. For those of you out there who join me in that living hell, we have a bond that transcends all social barriers and I welcome you with open arms. High school is hard, high school with a disability is soul-crushing.

At the time, some hack physician who is long, long gone by now decided between my Junior and Senior years, while I was in L.A., would be a good time for me to take Prednisone. It would save my renal function! Lots and lots of Prednisone. If you’re in the know, I took 60mg three times a day for almost half a year–yes, three times a day. For those of you unaware of the numbers, that dosage is outrageously high. The thought of it, were I to have to take it today, terrifying. I don’t know what it compares to, frankly, there is no greater medical evil than Prednisone. I’ve overheard nurses at the transplant clinic apologize to patients who have to take 5mg once a day:

I’m sooo sorry, we just can’t figure out how to get you off of the last five milligrams, you’re going to have to take this sliver of a pill … I hope it doesn’t effect your life in a negative way. Really, we’re soooo sorry.

By the time I arrived back in NH, every side effect that miserable drug offerred, I accepted. My face had ballooned into comical proportions. I had acne everywhere, my back was like a battlefield rife with craters. My mood was completely nutty. I had fits of anger and lonely bouts of sadness. Yet, Merrimack Valley, you were not kind to me, at least not in memory. Your students made fun of me, your teachers offered no solace. Your lunchroom, Jesus, your lunchroom–what level of darkness it accessed. There were no celebrities on dialysis back then, you see. No George Lopez kidney transplants. Nobody knew what the fuck I was going through. Probably not even me.

I missed the “professional” senior class photo-shoot everyone else went to, I couldn’t face a camera. My class picture, set into eternity in the yearbook, was taken the last possible day a photo could be turned in. One of my two friends took it, just outside the Senior locker area (don’t get me started, if the lunchroom was hell, the Senior Locker Area ate hell for breakfast and spat it out next to the puddles of chaw on the sidewalks); I stood in front of some wall and tried to make my face look normal. Yeah, good luck, young me.

I don’t know if this post falls under the definitely-kidney-related column or … some other column. I’m not sure how to even end this post, I find myself weeping at the keyboard again. What can I say? I’m half-apologizing for a Facebook post which turns out to not be all that rude, if you think about it, and half-devastated at the renal revelations it has afforded me. I created a thin-skinned insult and was rewarded with a deluge of devastating recollections.  I mean, I could’ve said:

You can count us as a negative four, and by the way, you rat bastards, there was barely anything good about my high school years with you monsters (you know who you are) and certainly nothing happy happy happy about losing my kidneys, so of course I’m not fucking coming across the country for those memories to be stirred up like mental muck in a witch’s cauldron. Have fun without me … you always did before.

But I didn’t. I’ve got more important things to do. Like recover.

The Weight of Peritoneal Dialysis

Okay, so I got an intriguing question from a reader (yes, it turns out I have some). It goes …

Do you think someone 87 years old could handle peritoneal dialysis? The 36 year old doctor thinks so but I think it sounds like it’s a bit much for someone that age to handle.

-Jane

First of all, Jane, thank you for trusting my opinion enough to write – that’s cool. Secondly, please do remember, devoted fans, that I am not a doctor. Or a nurse. Come to think of it, I have never worked at all in any medical profession. I’m better than all of those people. I’m a patient. Everything in this entire blog is opinion-based on experience – not on schooling.

I don’t know the physical and biological aspects of our 87 year old patient (let’s call him “87″). There’s a bunch of scientific discussions for why a patient should or should not attempt peritoneal dialysis, none of which I have any authority, really, to expound upon. So if 87 has trouble healing, for instance, maybe the catheter site would cause trouble. Then there’s efficiency, PD may be more or less efficient depending on the patient’s physical make-up. Hemodialysis, though evil it may be, can offer different solutions for different people. The doctor will know.

Okay, let’s assume 87 is performing his own peritoneal dialysis treatments. There is daily set-up and tear-down of the machine – this takes 30 minutes, more or less. If 87 only dialyzes during the night, then he’ll only have to hook up once before bed and then upon wake up to unhook: the hand-washing and other prep for these procedures can steal a bit more time, but is easy. What concerns me about 87 is the boxes of dialysate solution. Each box contains two bags of solution; each bag is six liters. For those of you stuck in the dark ages of measurement, six liters/kilos equals 13.2 pounds. Anyway, the boxes have 12 liter’s worth of solution, or just under six gallons of milk - if 87 has to carry the box any distance, he’ll need to have the upper body strength. Even carrying one of the bags could be difficult.

Then there’s the number of boxes 87′ll have to store. At my home, my stash of boxes is in our front hallway. It’s the first thing guests see when they walk into the house, which is totally awesome. In my case, I receive 10-30 boxes every two weeks. I could ask my delivery driver to use his fancy mechanical hand truck to bring the boxes upstairs to our bedroom. But then they’re in our bedroom. So I carry my supplies up to my machine each night. I have gotten used to it. Some nights, those boxes seem extra heavy even to me, a young, strongish man. Plus, I’m handsome. But a guy can only write so much in one blog post, so we can talk about me later. For relevance’s sake, let’s just say being handsome has almost zero effect on any kind of dialysis. So far. But I’ve been writing my congressperson, so look out.

And then (back to PD) … there’s the waste bag. The machine fills a waste bag with solution that has passed through the peritoneum each night. Do the math and realize: two solution bags + fluid removed from the body = one waste bag. This waste bag is huge, has no handles and must be carried to a bathtub to empty. It is possible to run the machine’s waste line directly to a toilet or a tub, instead of to this large bag. Current scuttlebutt suggests that it may be all-around safer to do it this way anyway. There are even new products (of course there are) for locking the waste line tubing into place under the toilet seat. If 87 has no access to a drainage receptacle, please do consider the weight of the waste bag.

Peritoneal dialysis is less bothersome than hemodialysis, in my opinion. For instance, if your home is in a rural area, driving three times a week to an HD facility takes a lot of time away from life – by contrast, PD supplies would be driven to you. But PD is not without its difficulties. The problem is: this is still goddamn dialysis. Whatever modality we choose, we still kinda lose.

(Nice, right? With the rhyming and stuff? That’s quality blogging right there.)

Now, if 87 has a reliable partner who is able and trained to do PD, why not? I understand your under-the-breath comment about the young doctor. What the heck does he know, right? Strapping adolescent Porsche driver? Well, young doctors, thank our stars, are becoming more versed and comfortable with PD. They weigh the performance of PD against HD, and likely find that it is overall gentler to the body. There is no blood exchange, nor needles – this not only avoids six 14-gauge needle sticks a week (that’s right, a common size for HD needles is similar to speaker wire) but also lessens the need for plasma and Epo, aka blood replacement therapy. Excess fluid in the body is removed daily instead of, uh, bi-daily. This is a miracle for those of us who have trouble with fluid gain – taking fluid off each night in four or five gentle exchanges almost makes fluid removal unnoticeable. 

I want to emphasize that I don’t know anything about your 87 – your 87 could be quite physically capable, maybe this is what that young doctor is thinking. Just remember: if you and 87 decide to go forward with PD, with a partner, the partner will need to be trained and always available during treatments. If 87 decides to take on PD solo, awesome! Keep those hands clean and don’t ignore training – following the rules set down by a PD nurse will eliminate those pesky hospital visits.

Seriously, Jane, thank you for asking my opinion. I hope my thoughts give you direction. 

Virgin America – Best Airline?

I’m flying for the first time since I began peritoneal dialysis. I have flown before to other places with hemodialysis clinics, but not this. It’s an adventure – the case for my machine is three or four times larger than the machine itself. It is literally the largest piece of luggage I have ever used. And it’s just for one thing. I was concerned about the process for bringing my machine onboard – it is considered in the same category as a wheelchair, a life-support device – it is supposed to go just behind the cockpit so that it doesn’t get sent to FLA while I go to BOS. I “chatted” with a Virgin America employee this morning just to clear things up. It speaks for itself (informative and complementary):

Please wait while we find an agent to assist you…
Hi, this is Cinquenta, how may I help you today?
Jason Hamlin:  Good morning. I have a question about checked bags
Cinquenta:  Sure. What can I help with?
Jason Hamlin:  I have one bag with my personal items and a second bag which is my peritoneal dialysis machine. By law, I am not supposed to pay for that second bag with my life support machine – it is supposed to go on board with me. I want to make sure I fill out the check in information here online, how many bags should I say I am checking?
Cinquenta:  Let me get some clarification on the matter, Jason.
Jason Hamlin:  of course
Cinquenta:  http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions Thanks for your patience, Jason. Since you will not be paying a checked baggage fee for your machine, and all you have left is personal items that will count towards your carry-on, then you won’t need to select that you have any checked bags.
Cinquenta:  Also, you may want to check out the link. I bet it would help you out a bunch.
Jason Hamlin:  You are very kind – this is my first time flying with dialysis and I’m feeling overwhelmed. I will check out the link. I spoke incorrectly when I said just one bag. I will be “checking” one suitcase, and then a small carry-on. I will check one bag and pay the $25 for that.
Cinquenta:  That’s absolutely right. I’m glad I could be of some help to you. My uncle has dialysis and I know the difficulties a person, or a family can face. Just take it easy and breathe when you get a little overwhelmed. We’ll be here to help with what we can. =) Is there anything else?
Jason Hamlin:  Not yet! Thanks very much. This is the best “chat” I have ever had with a business.
 
Seriously, that’s pretty awesome, particularly so from the perspective of a “disabled” person. Rock on, Richard Branson, rock on.