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Ain't That a Kick in the Kidneys

One Family's Life with Peritoneal Dialysis

UPDATE: 9/3/18

cryinganglehalfThis is a tough update to make. Keith is currently in the Mental Health Ward on an involuntary 5-day commitment. Some of you have asked or mentioned to me that his behavior has out of character for him, and you’re not wrong. It’s been gradually getting worse since early spring and came to a bit of a head last week. Emergency services were called two separate times and he was kept in the hospital for observation voluntarily for 72 hours. During that time it was decided that need to stay another 5 days.

Since he went into the hospital, they have changed a variety of meds – everything from his anti-depressant to his blood pressure meds. There has been a difference in the last few days, his eyes are clearer and he’s better able to have a conversation. Which says to me that he was having a reaction to something or a combination of the meds he’s on. His blood pressure has been lower in the last 24 hours than it has been in a long time, and again he seems better.

Right now he is really mad that he is being held against his will. He’s saying he is being incarcerated without due process and really wants me to find him a lawyer to take the case and get him out. So this is partially a request from him to ask for help. He’s known a lot of the legal profession and hopes someone will help him. From the research I’ve done, the 302 hold (what the involuntary hold) doesn’t have a lot of wiggle room. I believe that the hold is kind of ironclad and can’t be broken. If there is someone out there who can answer any of our questions I would love to hear from you.

It has been a long week, and honestly a long summer, for the girls and I. Because they are more involved in this I’m going to respect their rights to privacy. I will say that for me, it’s been hard in a lot of ways and for a long time.

I want him home, we all do. But we realize that something had to give. More than him being home, we want him to be as well as possible – and that hasn’t been happening with the out-patient care he was receiving. I think it’s fair to say that we’ve all be anxious for some time and we can’t keep going the way things are. While this isn’t ideal for anyone, at least they are addressing some of the issues and meds adjustments that I haven’t been able to do.

He’s bored (no cell phones, no TV in your room, visiting hours once a day for 2 hours, no pencils, no snacks) and has said he’s going to do the best he can to make notes. He thinks that this experience is going to make one great (and scathing) blog post. He’s angry, and I get that. I am a defeatist because I’m not trying hard enough to find him a lawyer that will get him out immediately over the long Labor Day weekend.

So, here is the plea….if you are familiar with Mental Health Laws, are a lawyer or know a lawyer who is willing to work with someone with no money to pay them (though Keith seems certain that he will sue and win millions for being kept there), I would really like to hear from you.

Thank you in advance for your support.

 

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Waiting in Rooms

Screen with numbers giving patient status.
The patient status board in the waiting room.

One of the things I’ve spent a lot of time doing the last few years is sitting in waiting rooms. Keith has had multiple procedures for inserting catheters, removing catheters, graphing nerves so create his fistula (which is probably another blog post). Then there’s time waiting in the emergency rooms and doctors offices and hallways. You’d think I would be really good at waiting at this point. But honestly, not so much.

I mean, I’m better than some other people I’ve been around. I don’t get nasty with the nurses or staff (or the doctors). I don’t get nasty with other people waiting (I’ve come close, but I’ve managed to keep my mouth shut). I mind my own business. I people watch (but try not to be obvious because nothing says creepy like staring at people in a waiting room). Sometimes I crochet. Sometimes I work on my writing. Sometimes, like today, I work on updating the blog or try to work ahead so that some of the more generic posts can go up automatically).

Chicken, bacon, cheese, spinach and tomato.
Grilled chicken piece is usually cheap and filling. Splurged on spinach and bacon today.

I may know the cheapest things to get in the cafeteria and which parking lot is less likely to be filled depending on the time of day, but it doesn’t mean I’m good at waiting. I think I’ve gotten used to it. I check the status board every 90 seconds or so. I hold conversations with myself about focusing on whatever is in front of me and not pacing.

I get anxious and nervous and try not to freak out. Sometimes it’s easier than others. Last procedure I was really chill. Today is not a chill day.

Quick Update 7/24/18

Man on a hospital gurney in elevator
On his way to get his hemodialysis catheter removed.

I’m sorry I haven’t updated…but…life…and things…and now it’s July. We’ve had some ups and downs. Keith has been in the hospital a couple of times since the beginning of the year, and there have been multiple trips to the ER that usually ended up in him needed to go for hemo (some of us seem to have trouble understanding the no salt/sodium thing). We did have his initial transplant consultation – which is a post itself. But for now a quick update.

Keith is going for a heart catheterization on Thursday (7/26). His last stress test was abnormal but that was right after he started hemo and were changing meds and it wasn’t something the cardiologist was stressed about, so we held off. When we went to his transplant meeting they said a “heart cath” was a requirement (I believe it is for anyone over 50) as well as few tests before he can get on the transplant list. So we went to the cardiologist yesterday and they decided to do it this week. They aren’t really expecting to find anything given the stress test, but we’ll know for sure and it will be one thing checked off of our To-Do list.

We’ve been having some trouble with Keith’s meds. Some of them have side effects that cause changes in mood. We’ve also noticed changes in personality (so of you on Facebook may have noticed). We are aware of these things and we’ve talked to two doctors and see another soon. It’s the kind of thing where you go to the doctor and they say that someone needs to do something but it’s not them so try someone else. We’re working on it and hopefully, things start getting better soon.

Man and teenage girl on airport moving walkway
Keith and Rebecca on riding the moving walkway at the airport after getting Kayleigh there are 4 AM.

On the positive side, Kayleigh is in Canada on a research trip for school. Rebecca will be heading to summer camp too. Other than that things haven’t changed much. A lot of the same challenges, a few new ones, very few have gone away.

First things first, a hopefully uneventful procedure on Thursday. Say a prayer and cross your fingers.

What Now or January Sucks Part Duex

20180115_122630Those of you who read my last post know that I am of the strong (and well-founded) opinion that January Sucks. I present further proof.

I went to start my car this morning and it didn’t. Not unusual for this time of year, but I was surprised that it was so dead it kept my key. We eventually called my mother-in-law for reinforcements/jump and thought all would be well. But the jump didn’t work. The car would start powering-up but as soon as I tried to start it the dang thing would totally shut down. Obviously, we needed a new battery and a tow. But of course, January Sucks.

20180115_105848We are broke. I mean BROKE right now, but I found someone who would give me credit to get a new battery and our insurance would pay for a tow, so I thought I could make it work. I call in Dead Car to work, get the car towed, no problems. Only January Sucks.

The car gets towed, the garage works on it, it all goes smoothly and takes less time than we thought it would. I charge the battery, get in the car, turn it on and it starts. Huzzah. I put the vehicle in reverse and I have no steering. None. I go back inside and they said they thought maybe it came in that way. Um…No. I tell them the last time I was in the car I could turn the wheel the whole way and now not so much. Someone goes out with the hand-held computer while Rebecca and I go inside (awesome MLK Jr. Day Family Outing). The car goes back in the garage and we wait some more. Eventually, the guy and comes out and tells us they can’t fix it. January Sucks.

20180115_105755Garage Guy says he’s never seen anything like it and isn’t sure what the problem is. The error message he’s getting is a sensor by the tires near where they hook the chain to pull the car on the truck. But when he looked up the car, this model car history of several electrical steering issues. They don’t do electrical there. They can’t fix it. The car can’t be driven. It will need to be towed somewhere else that does electrical. Of course, because January Sucks.

So now I need to take the vehicle somewhere that does fix electrical issues and I don’t have credit. Oh, and the insurance company only pays for one tow. And the towing company – who did not jump the car enough to put it in Neutral and drug it up the ramp in Park by the way – is calling the garage a bunch of liers, but a manager or owner will call me back at some point. They’ll probably be able to tow it to the mythical Somewhere Else, and most likely charge me for it. Because January Sucks.20180115_122633

I don’t know what to do. I have no vehicle. I have no way to pay for the tow to get the car towed Somewhere Else to get fixed. I have no way to pay for it when it gets Somewhere Else. I have no way to get to work, which is the only way I would be able to afford to get it fixed. I literally cannot pay my light bill, so I’m not sure how Somewhere Else is going to take to me asking me to pay them…Someday for a car, I need today. Just because February sucks less than January, it doesn’t mean Somewhere Else will accept it as a possible time payment.

I have no Fairy Godmother to come to the rescue. I have no one at a garage who would be willing to work with me. I have no one with a tow truck. Basically, I have no hope of fixing this situation.

Say it with me…January Sucks.

 

Januarys Sucks

20171230_111748I, personally, have a long and not great history with January. Every December 31st I get my hopes up that may this year, this January, will be better than the last. And every year by mid-January I am reminded I shouldn’t have. January 2018 has been no exception.

I’ll leave the Dark Januarys of the Past to themselves, just know there is a long history of illness, destruction, death and general unpleasantness. This year, like last January, we were hit with unexpected bills and weather colder than I budgeted for which means the coffers are empty. Since some of the benefits we were getting have been cut by the county because I make a whopping $200 a week things are getting scary fast. Keith and the girls have some idea, but I usually try not to worry them. But they know that January sucks.

Then I get a text from Kayleigh about how much we need to come up with for books for her Spring Semester and I lose it a little bit.

I’m potentially doing some grant writing, and I do have that “big” check I get every 2 weeks. And come the beginning of February we’ll get another disability deposit. I’ll figure out a way through. I just can’t promise I’ll keep the lights on, literally.

20171230_104456But that’s really same old same old, isn’t it? Me posting on the blog about how bleak things look. You’re probably all immune to it now. I probably should be too. But it’s January, and January Sucks.

It’s not all about us (in the grand scheme of things nothing is really about us). Keith found out yesterday at one of his “Dialysis Neighbors” passed away. He was one of the people Keith chatted and laughed with 3 days a week for the last few months. Needless to say, it is hitting Keith pretty hard. He keeps saying things like, “At least he doesn’t have to go through this bullshit anymore.” It’s one of the things we say when someone has been sick, but for Keith, it is also a reminder of what the foreseeable future looks like. I’m trying to be positive for him, but it’s rough because January just sucks.

Not that February is a lot better. Usually the bad of January oozes itself into February and clings around until March. I should be used to it. I know it’s coming. But I never seem to be prepared. January sucks and it still gets to me every year.

And no, it’s not the winter blues. It’s not the post-holiday blahs. I have quantifiable data as to the magnitude of suckage from Januarys past. Since I was a kid family members have died, or gone through surgery and or had strokes in the month of January. The space shuttle Challenger blew up on my birthday at the end of January. Last January I had to decide between buying a gallon of milk or putting gas in the car. If we’re careful we’ll be able to get the milk and gas, just not pay the electric bill this year – so major improvement.

Sorry for being such a downer. People don’t want to hear this. People want to hear that things are going better. They want to hear that Keith is doing great and everything is going to be ok. The thing is, it’s not going great and despite telling myself that everything is going to be ok, I really have my doubts. Then I remember it’s January and things won’t come close to OK until the crowds start to gather at Gobblers Knob.

January sucks. We just have to hang on until the calendar changes.

Update 12/11/2017

20171010_220414.jpgWe’ve had a rough couple of weeks. Long story short, they had to change Keith’s hemodialysis to remove more fluids. Too much fluid means a lot more effort to breathe and stress on his heart. We received official word that he is in heart failure. It’s common for those on dialysis. It’s also part of the reason he was in the hospital in October (but no one put it in those words for us). It’s not good. But, like so many things in our lives, it could be worse.

As a few of you know, I started working part-time since Keith doesn’t need me to do his dialysis multiple times a day and is doing a little better (there was a bit of a set back last week, but he’s starting to perk up again). It’s just a few hours a week, but I’m making enough money that we no longer qualify for food stamp. Which is good. And not so good. I mean it’s nice to not have one more thing for people look down on us for (I mean, who has ever said something nice when they see someone using food stamps?)

Of course, a small paycheck (and no more help with food) doesn’t mean we really make ends meet. There are still things like heating oil, uncovered medical bills, and a million little things on the never-ending list of items we can’t pay for. Well, we can pay for some of it but we’ll have to do things like not pay for rent or utilities (or now food).

I’m not complaining, I paid the rent this month without having to ask local charities for help (unlike last year). Christmas just makes it that much harder to deal with the situation we’re in. It is better than last year, the girls aren’t getting presents from Everything is a Dollar (new toothbrushes and nail polish remover for everyone!) or $5 Below (in case you aren’t familiar with this store everything is $5…or below…it’s a step above the Dollar Store and the stuff last a week instead of a day). This year they’re getting a present on sale from Wal-Mart too, so you know…life is better. It makes us feel awful that they are so patient, understanding, and don’t ask for things and we can’t get them the things we know they want and deserve.

20161209_163401Don’t get me wrong, I grateful for everything we have, and how much better things are looking than they were this time last year. It can get a little depressing watching folks take their families on trips and talk about the great surprises under the tree for the kids and knowing that my girls are getting heavy blankets and space heaters for the next time we run out oil. I am thrilled that most of my friends and family are doing so well and not facing the struggle we do, I would never begrudge their success. But that doesn’t mean I don’t wish that Santa could somehow put a miracle under the tree and make our lives better.

We have a lot to be thankful for, and that’s what we’re going to focus on. Things always work out – they just try to give me a nervous breakdown first.

Keith has a stress test next week, so we’ll have a more complete picture of the condition of his heart for Christmas. Hopefully we get a miracle.

Update on Keith 11/16/17

At last, the long overdue update on Keith! I apologize for taking so long, but things have been a little…hectic. As I mentioned, Keith has started hemodialysis, and I have great news – it’s working!

Keith is doing much better than he had on Peritoneal Dialysis. His numbers are better, he is more alert and he’s back to making really bad jokes. We’ve teased the staff and asked if there is a way to clean those out of this system, but there is no treatment for bad puns. His blood pressure is still not awesome, but we’re making adjustments and it’s improving.

20171011_124451.jpg
Hamming it up before surgery.

His blood pressure has been a problem. It spiked so high I had to take him to the E.R. the day before his surgery for his fistula. I gave him his emergency BP med and by the time we got to the ER it was back down to a really good number. They ran some tests that showed his heart enzymes were high, which is a sign of a possible heart attack. It’s also pretty common for dialysis patients to have higher than normal enzymes. They kept him overnight so cardiology could clear him for the surgery. Which pushed his surgery from first thing in the AM to late afternoon. Which meant another night in hospital and dialysis there.

20171017_123420.jpg
He decided to pretend he was sleeping for the photo.

His BP hit another crazy high on the way to dialysis one day. Turns out that his sugar was really low (someone from the clinic figured it out – it was the last thing I was thinking). A couple of mini cupcakes later and he was ready for dialysis. For some reason, that was the day Keith decided he needed a picture taken in his dialysis chair. He usually looks better than this. Things have run fairly smoothly since then, but that was a crazy few weeks. For some

One of the biggest things, and one that I’ll give more information on when I get it is Keith is starting the process to get on the kidney transplant list. Being a hemo patient makes him more eligible than being a PD patient – I guess they expect you to be sicker if you’re on hemo. So far, the process hasn’t really involved us. His information has been passed on to…whoever it gets passed to. I’m sure we’ll hear something soon enough, and there will be a ton of hoops to jump through. Getting on the list and to the point where you start looking for a kidney (even if you’re thinking about a living relative donor) takes a long time, especially if it isn’t an immediate/emergency need. The good news is that the process is starting.

It’s a new long and winding room, but at least we’re moving forward.

2 Sides of a Story

Inside of a medical office
Prodigy Dialysis, Johnstown, PA

There are two sides to every story, and even though I owe a long overdue update on Keith, I need to share another side to a story aired by WJAC-TV6 in October. Yes, that’s Keith’s former employer. He and I both know how the news game is played and for the most part stay out of commenting on any news for a lot of reason. But when they reported on Prodigy Dialysis I knew I had to say something, it just took a little longer than I planned to find the words.

As most of you know, Keith was diagnosed with End Stage Renal Disease (ESRD) in 2016. He was already a patient of Dr. George Frem, and then became a patient of Prodigy Dialysis – a Peritoneal Dialysis Clinic located on Osborne Street (Johnstown, PA) in the same building (the Kidney Center) as Dr. Frem’s practice and St. George’s Lab. As I have written before on the blog, we could not have been treated better by the staff at Prodigy and it was sad leaving them when Keith moved to Hemodialysis.

Recently, WJAC reported on the results of a survey done by a local representative of the Center for Medicare and Medicaid Services (CMS). This was a surprise, but routine survey (or inspection) of the Peritoneal Dialysis Clinic. Yes, deficiencies (infractions, failures – whatever you want to call them, but technically they are deficiencies) were found. Some were corrected before the surveyor left the building, but were never acknowledged in the final report. I have read the final report from CMS. I have read Prodigy’s response and Plan of Correction. Frankly I was baffled.

I was most surprised to see them written-up for several things that were basically hemodialysis (or hemo) infractions. The Osborne Street location of Prodigy Dialysis doesn’t do hemo, it doesn’t have hemo equipment, and subsequently doesn’t treat hemo patients. As I’ve discussed before, Keith was doing Peritoneal Dialysis (PD), and therefore went to a PD clinic – Prodigy Dialysis on Osborne Street.  We liked the idea that their focus is solely on PD patients but are able to get patients placed in a hemo clinic quickly if needed. One of the infractions that the Prodigy location that only does PD received for insufficient cleaning/separation of hemodialysis machines for hepatitis positive patients…they don’t have hemodialysis machines…at all…but they were cited any way.

20170607_213536The big thing with PD is that it is done in the patient’s home by the patient. There may be a machine involved if the patient qualifies for that form of PD, but the patient is the only one who uses the machine that’s only used for Peritoneal Dialysis. It’s not shared or used by anyone but the patient. In their own home. Not in the clinic. I just don’t understand how the infraction they received is possible when they don’t have the patients or equipment they were written up for.

And yes, they were written up for not having a separate treatment area for hepatitis patients. But the thing is, they don’t treat hepatitis patients at the Osborne Street location. Prodigy has an agreement with another facility that has the appropriate isolation facilities. This is not only allowed but encouraged under the state regulations they were measured against in the survey. They have the ability to isolate someone if they walk through the door, but as a rule hepatitis patients aren’t seen on site- not for the clinic’s sake or because they don’t want to, but because that’s what’s best for the patients.

And no (as was pointed out in the survey), not everyone on staff is not trained on advanced life saving techniques. They’re trained in CPR and how to to use an automated external defibrillator, but they aren’t certified in administering drugs. Mostly because they don’t need to be. Any doctor’s office or hospital has employees that are considered part of the administrative staff and not part of the clinical or treatment personnel. Prodigy’s PD clinic received deficiencies because not everyone on staff was certified to provide suction or medication to someone in cardiac distress. But, whenever the clinic is open there is someone who is trained and certified is in the building. The people mentioned in the survey are not required to be certified in advanced life saving. Not all of them are employees of Prodigy Dialysis – there are three separate organizations in the Kidney Center on Osborne Street, so not everyone you see is employed by Prodigy and not really part of the requirements for Prodigy. And yet, Prodigy was found deficient.

files-1614223_1280What does it all mean? Basically what it boils down to is paperwork and politics. In the near future, Prodigy Dialysis’s Peritoneal Dialysis Clinic will not be able to bill Medicare and Medicaid for patient treatment. They are allowed to treat PD patients, they just aren’t allowed to bill Medicare or Medicaid for it. Prodigy has submitted an appeal to the CMS report, and as of right now things proceed as usual. Patients will received the same professional and personalized care they’ve always received.

Prodigy Dialysis’ Osborne Street location is the only independent PD clinic in the Johnstown area. They don’t have a large staff at multiple facilities like some organizations. They have a handful of staff that handle patient care and the paperwork associated with it. The day the surveyor came was a patient care day where the focus was on seeing and treating PD patients, not running reports. Prodigy’s nursing staff visit’s patients in the hospital and call to check in when someone hasn’t been well, not because a corporate office in another state told them to. They do it because they care.

My question is this – if Prodigy Dialysis has been received deficiencies for things aren’t applicable, what is happening with other facilities in our area? Are other clinics being cited for things that are not applicable? If something as big as not treating hemodialysis patients is being overlooked, are things being overlooked that really are life-threatening at other facilities? Can we really trust what the surveyors are finding if they don’t know the actual regulations for the kind of facility they visit?

Woman in black dress and hills hooking up her husband for Peritoneal Dialysis
Peritoneal Dialysis is done at home, not a clinic, and not with machines. Photo by Rebecca.

In all fairness, I am the Patient Advocate at Prodigy Dialysis Peritoneal Dialysis Clinic. I meet with staff and patients on a daily basis. One of my responsibilities is to work with patents when they have concerns about the facility or the staff. I have yet to hear one negative comment about either.

While WJAC did report facts, they didn’t explain them. Prodigy Dialysis Peritoneal Dialysis Clinic was not found unsafe or a threat to patient care. Prodigy didn’t met requirements by Medicare and Medicaid which are not legal requirements for the clinic to operate, they are billing requirements. They are allowed to treat all patients, including Medicare and Medicaid, they just can’t bill Medicare or Medicaid for treatment. The PD Clinic is in fact in the appeals process and will be treating Medicare and Medicaid patients for free until the situation is resolved. They’re doing this because transferring patients to another facility, just because of money, isn’t good patient care.

I never worried about my husband’s treatment or safety at Prodigy Dialysis. I would recommend them to anyone in need of Peritoneal Dialysis for End Stage Renal Failure. I wish I could say the same of the individuals in charge of certifying the facility.

A Very Not Awesome Update

20170307_130353Sorry about the lack of updates, things have a been a little chaotic. The big news is that Keith’s hemoglobin numbers have come up, but his numbers overall have not improved. We’ve tried every combination of dialysis solution and exchange schedules. So it’s time to try a different modality. In other words, it’s time to switch to hemodialysis.

Hemodialysis is the kind of dialysis most people think of…a patient going to a dialysis clinic several days a week to be hooked up to a machine that cleans their blood. It can be hard on the body and generally taxing on the patient and their family. It’s not the first choice for someone Keith’s age and medical background. But in this case, there isn’t another option.

As for why PD didn’t work for Keith, there’s not necessarily a reason. Sometimes PD just doesn’t work for some people. We knew from early on that his peritoneal membrane seemed to work slower than average, and therefore not a well as the medical staff would like. It’s just one of those things, and considering how well things have gone all along for us, probably not all that surprising.

In the next few weeks, Keith will have minor surgery to put in an arteriovenous fistula and a catheter, as well as to remove the PD catheter. He’ll probably start hemo in 2-3 weeks. In the meantime, we keep doing the PD  and start to adjust.

Keith will likely go 3 days a week for a few hours (4 or less) here in town. We’ll be at the mercy of the center to some extent as far as when, but he’ll be able to nap or watch TV or whatever while he’s there. I’ll probably be dropping him off most of the time while I run errands, do some of the freelance work I’m lining up, and get a few minutes to myself (a rare occurrence right now).

20170412_130444It’ll also mean that we won’t have to deal with hooking him up for exchanges three times a day, or ordering and receiving dialysis solution. Or gloves and masks, or caps, or making sure the house is closed up tight and the heat isn’t blowing when it’s time to hook him up. So, there are trade-offs.

Hemodialysis also means we change care teams. A few of the folks will be the same since the clinics are associated, but we’ll be leaving the PD team. They have been amazing to us and while I know we’ll still see them around (I’ll be staying at the clinic volunteering as the Patient Representative), it’s sad and anxiety-inducing to think we’re leaving the people we know. They’re going to help us through the transition, and I know that we won’t be going through this alone.

To be honest, I knew this was coming. The team has been discussing it for a while, and I’ve done enough research to know that was the next option. The good news is that he should start improving pretty quickly. Is there a chance he could improve enough that a kidney transplant is back on the table? It’s possible, but that’s still a long way off.

There are a bunch of other things going on…Kayleigh is at college…I’m working on getting some freelance writing work…we opened an Etsy store…I have a metric crapton of paperwork to do…but at the moment they seem a little less important.

But like a wise woman use to say, “This is just another bump in the road.”

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