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Ain't That a Kick in the Kidneys

One Family's Life with Peritoneal Dialysis

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.

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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.”

Overdue Update

20170815_114203First, thank you to everyone who sent prayers and good wishes. They were greatly appreciated. Keith is doing better after the transfusion – not great but better. We went to his monthly clinic appointment a few days after the transfusion and we’re happy to hear his numbers had improved. One of them had to be at least a 10.0 to keep him out of the hospital and he was at 10.1. So yes, better, but not great.

They’re changing his dialysis solution again, and are going to be adding meds in a couple weeks to try to keep his red blood counts up. There will be more blood tests and an adequacy test this week, and most likely more changes after that.

There’s a lot more going on that’s more family related than medical related. I hope to be able to update again soon.

Thanks again for the prayers and good wishes.

Well…Crap

Our regular followers know that I took Keith to the clinic last week because he wasn’t doing well – turned out his hemoglobin numbers had dropped. A lot. They gave him a shot and some fluids that seemed to help for a bit. He went for his regularly scheduled blood tests today and we just got the call that his numbers dropped a little more. Not good. Very Not Good.

We’re expecting a call in the morning that he needs a blood transfusion. This is a first for him. It’s not necessarily unheard of, but it’s not good. We don’t know why his numbers have dropped, so once we get him a little more stable we’ve got to get that figured out. He’s not showing signs of the most common problems, and I’m not sure if that’s good or bad.

To make matters worse (those who are friends on Facebook know) I got some sort of stomach virus last week and ended up in urgent care getting fluids. Normally this kind of virus a day or two – but as I understand it there is a strain out right now that can last 2 weeks. Guess which one I have? I’m much better than I was this time last week, but I still get pretty nauseous whenever I get up and walk around and totally exhausted.

When you add in that I have a pile of freelance writing to do, the usual paperwork that needs to be done, a kid who leaves for college in two weeks with a host of things that need to be done (from physical to refrigerator) and a rising 7th grader who starts next week…things are complicated. And overwhelming. Honestly, I’m at a bit of a loss at the moment.

I’ll post updates as I can. Please subscribe to keep up-to-date on the latest.

Well That’s Really UnGood

We’ve had a long week. Well, that’s putting it mildly. Late Tuesday/early Wednesday, Keith was talking to Kayleigh and suddenly started to feel off. She took his blood pressures and it was…low…like consider calling an ambulance low. I went into emergency mode and got it up to a respectable level pretty quickly, but it was still low. We ended up having kind of a party with everyone in the house up – including the 12-year-old who can and has, slept through fire alarms. I stayed up with him and was pleased to see that everything seemed fine by early afternoon.

Only it wasn’t. Basically, we rinsed and repeated at various times to varying degrees for the next few days. Both Keith and I were having some stomach problems, so I thought maybe we had some sort of bug and kicked into “So You May Have a Stomach Bug while on Dialysis” mode, and things were…Stable. Ish.

Slowly he got worse and worse. He was sleeping more and more, zoning out, and generally not being at all helpful answering questions about how he was feeling or doing the things he does himself (like test his blood).

Inside of a medical office
An afternoon at the clinic

Flash forward to today and a sudden trip to the clinic. Blood tests were had and we learned that his hemoglobin levels dropped by a little more than 3 points (not .3,  more like -3.4 or something) since the middle of last month when his number was excellent. Much lower and he would have gotten to have his first blood transfusion. Instead, he a shot of Procrit – a man-made protein that helps the body produce red blood cells, and a bag of fluids just to be sure he wasn’t dehydrated.

Low hemoglobin is extremely common in kidney dialysis patients. This isn’t the first time his has been low, but it is the first time that it’s been this low or dropped like a rock. The question is why it dropped the way it did. He didn’t have any injuries, so he hasn’t been bleeding visibly. Could he have something going on internally? Yes, but he doesn’t really have any other symptoms for a serious internal bleed. Could he have an ulcer or something we don’t know about? Sure, but we need to do some more tests to know. Could it just be a strange thing that we can’t explain and in the end chalk up to strange kidney dialysis crap? Yep, it could be that.

20170807_154148Keith should be feeling a little better soon, but it’s mostly a wait and see. For now, he’s going to have to have someone with him most (more like all) of the time until we know he’s a little more stable and stands up without falling down. We’ll have to find a “Keith-sitter” when we have to go out. Kayleigh and I will probably be splitting sleeping out in the living room with him until we know he’s not going to have a problem in the middle of the night that someone needs to be awake for. (Rebecca is using her sleep away camp scholarship this week, but even if she were home there would be no keeping her awake or waking her up).

We’ve gotten a lot of comments on the message I posted to Facebook that something was going on, so as soon as I know more or have an update I’ll update. Thanks for the prayers and good wishes everyone!

Looks Like Divorce is in the Air

Shame (from the series A Love) by Max Klinger (German, Leipzig 1857–1920 Großjena)As promised last week, here’s a quick update on being told that we need to get a divorce so that I can take of my husband. It’s true. I cannot be his paid caregiver while being married to him or his power or attorney.

Which leaves me with all kinds of questions and mixed feelings. Part of me knows that logically I have to do what’s right for my family, and that being married or not being married won’t really change anything for us as a family unit. But it still hurts. The last 20 years haven’t been easy but we’ve managed to stay together. Now I have to break our vows to keep our vows.

The thing is, there are other legal protections for us because we’re married. As his wife, I can make decisions about his health care, file his paperwork for assistance and other things he cannot do himself. If I’m not his wife or power of attorney I can’t do those things anymore.

There’s also the fact that if I’m living in the house my income counts against the income limits for getting assistance. Meaning, if I am working to take care of him my income for taking care of him may put us over the limit for the program paying me to take care of him. And that of course completely defeats the purpose of what we’re trying to do in the first place.

office-1209640_1920I’m trying to find someone with professional experience who can give me some advice or suggestions…I can’t make any decisions without information, and I’m hitting dead ends trying to get that information. If you know anyone who may be able to help would you please let me know? At this point, I need to widen my network to try to find some help. I’m on the clock to have a meeting and start getting the support he’s been approved for in place – the 3 months they were supposed to take to get approved took a little over 4 months and I’ve managed to get myself a week to get information before I have to set an appointment to start making decisions.

We’ve been trying to stay upbeat, making jokes about Keith finding a girlfriend who can file the paperwork. Or maybe we could get married again later on and we can get new stuff because what we got 20 years ago is wearing out. But it’s not funny. Nothing about the last 14 months has been funny.

To say I’m stressed and anxious is an understatement. Again. There is no good way for this to end. There is no happy ending. I’m tired of being a grown-up. Anyone else want a turn?

We May Be Getting a Divorce

StoneKidThe good news is that Keith is finally all approved for the WAIVER Program. Awesome! We got a call from a care provider (before we got a call from the care management people which is a little suspect, but I’m reserving judgment until I get more information). I asked about the possibility of becoming Keith’s paid caregiver and was told that’s not possible in Pennsylvania through this program. She then said that she knows people have gone so far as to get a divorce so that they could care for their spouse.

There are a few other questions I need to be answered, and some more information to collect. But as of right this moment I can have someone we don’t know come in and take care of Keith while I look for a job (which I haven’t stopped doing) or we get a divorce so that I can make $11 an hour (with potential for overtime depending on how many hours he’s been approved for) and paid time-off ….. which I would have to bring a stranger into the home to take care of Keith to be able to use it.

Not to mention that it could mess up his qualification for the program in the first place (it’s household income based so even if we did get a divorce it would still cause problems in qualifying for assistance).

How messed up is it that the only way I can take care of my husband, basically a full-time job, and have an income in the state of Pennsylvania is if he is no longer my husband? All this talk by people about the sanctity of marriage and I’m faced with the very real possibility of having to get a divorce so that I can care for the man I promised to be with in sickness and in health until death us do part.

The money we had from our tax return and long-term disability is quickly running out. As much as I cringe thinking about it, a divorce may be our next desperate option to keep our family together. I’ll update as soon as know more.

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