Sorry 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).
It’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.”
First, 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.
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.
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).
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.
Keith 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!
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.
I’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?
The 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.
As I mentioned in an earlier post, we took the girls away for a couple of days to celebrate our daughter’s graduation and surviving the last year. It was our first overnight trip since Keith started Peritoneal Dialysis (PD). I was a bit of a nervous wreck about it. I’m proud to say all the stress and anxiety was worth it! We had a great time, and I don’t think things could have gone any better from the PD side. If you’re a PD patient or has a family member who is, I would love to hear from you about your experiences.
We chose Hershey, PA because it was far enough away from home to get us away from our day-to-day, but close enough to get home fairly quickly if things went south. We could have saved money by staying somewhere else but decided to stay at Hershey Lodge for several reasons. The two biggest are because we got a great deal and because they had a free shuttle running to and from the park all day. We reasoned that if Keith got over-tired or had a problem I could get him back to the hotel and the girls could stay at the park and enjoy themselves. I’m happy to report that the only time we needed to take the shuttle was over to the park in the morning and returning that evening.
When I booked the package I mentioned that my husband is PD patient and that we would need to do dialysis in the room. This was the first of several times I mentioned. I talked about it the first time when I ensured that we would have a refrigerator in the room. I also asked if there was anything they needed to know in advance to make sure that there wouldn’t be any problems. I believe that it’s better to be safe than sorry – so mentioning it as often as I did would have allowed me to deal with any issues as soon as they came up. And, if there was an issue later I could say, “But I spoke to SO-and-SO.” Maybe it’s overkill, but I like to have as many bases covered as possible.
My biggest fear was forgetting something. I started packing Keith’s PD supplies days ahead of time so I could check and recheck that I had everything. His dialysis team gave us an alternative dialysis schedule for the day at the park so we only had to do two exchanges instead of three, which means I didn’t need to pack as much solution. I used one of larger suitcases (thankfully with wheels) and loaded it with six bags of solution that easily weighed between 20 and 30 pounds – pulling it in a suitcase was much better than trying to carry the boxes into a hotel. That pretty much filled the bag but I was also able to squeeze in the warming pad, BP cuff, thermometer. I also filled a gallon zip lock bag with all of the gloves, masks, caps, band-aids and medical tape we’d need, and a few extra for good measure. His diabetes supplies either went in our little cooler or in the “miscellaneous” bag which held everything from the extra large bottle of hand sanitizer to medicine to sunscreen and of course extra phone chargers (can’t leave home without them).
The drive to Hershey went well, we got caught in traffic in Harrisburg, but everyone did just fine (Kayleigh even drove through tunnels for the first time with no issues). When we got to Hershey Lodge we decided to let the nice guys at the doors help with getting everything out of the car. It took both Kayleigh and me to lift the PD into the car (we packed light and only took one large bag for clothes, but it was packed tight). I figured that the strapping young man standing beside the car could probably do what it Kayleigh and I to do without even breaking a sweat. I was right.
When I checked in I again mentioned that my husband was a dialysis patient. I also told the valet it was the reason I needed to park the car someplace close to our room and where I could get to it in an emergency. Later that night I saw a cleaning guy in the hall and asked for a large garbage bag for my husband’s medical supplies. No one I talked to seemed overly concerned, other than to make sure that we had what we needed.
Once we were in the room I set up to do his afternoon exchange. At home, we have an IV pole to hang the dialysis solution on, but the pole doesn’t travel well. Fortunately, there was a lamp I could use a wire hanger I brought with me to hang the bag from. I used the space on top of the air conditioner for all the other supplies (antibacterial hand gel, gloves, masks, caps, etc.). It wasn’t pretty, but it worked.
One of my big concerns was what would happen when/if housekeeping came in. When we do everything right we can put everything in the regular garbage without any issues. But I could only imagine what someone would think if they came into medical gloves and masks and empty dialysis bags in the garbage. Maybe I’m just paranoid. Just to be safe, I put everything from each exchange into a plastic shopping bag, tied it shut, and put it in a bigger bag (which I tied shut before we checked out). We also put the “Do Not Disturb” sign on the door so they wouldn’t come in while we were in the park. I had visions of someone deciding there was a major bio hazard in the room and it causing …. issues …. so I did what I could to make sure that didn’t happen.
Before the trip, we talked to his PD Care Team about what we should do the day we were in the park. Because they changed his exchanges for that day we could spend the whole day at the park. The compromise with the exchanges was that he had to walk at least part of the time we were at the park. He rode in the motorized cart most of the time but did hike up the ramps to the rides. If you’re traveling with someone who has mobility issues having a motorized cart is a must. I just wish they were less expensive to rent. We’ve talked about buying one (I think we can get one through one of the programs he’s enrolled in), but the issue would be getting it in and out of the car (none of us are really strong enough to get it in and out of the car).
Overall it was a great trip. It also proved that we can go away as a family while Keith is doing PD. Everyone at The Hershey Lodge, Hershey Park, and Chocolate World was great! The young man who helped us get on and off the ride in Chocolate World was awesome – he made sure we were safe and having a great experience. He even made sure that Keith got sugar free treats at the end!
I recommend Hershey to any PD patient and their family for a place to visit!
It’s been an incredible and busy few week for us (hence the lack of weekly posts) and believe it or not, it was all good (don’t worry, we won’t get used to it). There are several topics I’ll be going into more detail on in later posts, but I thought I would share our good news first.
Our oldest daughter, Kayleigh, graduated from high school at the beginning of June! This is huge for anyone, but it is really special for us. We’ve moved a lot over the years so Kayleigh has attended 6 schools over the course of her elementary and high school education. She had her own health scare and spent most of her freshman and sophomore years at home in cyber school. Thankfully we were able put the last couple of years and she graduated with a great group of friends that I know will part of our lives for years to come.
Seeing her graduate was kind of surreal. She was in the front row so we could watch all of the emotions play across her face. She’s said repeatedly that she was more excited about starting college than she was sad was about leaving high school. She has good friends, but she doesn’t have the attachment to high school like a lot of kids do. Sitting in the auditorium I could see when her thoughts drifted to the grandmother she never met and a friend from junior high who left us far too soon as she touched the necklace that once belonged to my mother.
We have so many reasons to be proud of Kayleigh.
Ken Lantzy All-Star Band
Another reason to be proud was Kayleigh’s performance with the 1st Ken Lantzy All-Star Band. I first mentioned the event earlier this year when Kayleigh was notified that she was selected to be part of the honor band. The game was held last week and despite a heavy downpour and flash flooding, was a really great time for everyone. The game was really close and came down to one point with a possible go-ahead touchdown at the goal line with seconds to go.
The band was amazing, especially considering they only had one day of practice. They were to go back over the show before the game but the aforementioned storm forced them inside without having a run through of half-time. Kayleigh had a great time and was featured in a picture accompanying an article about the band in the local newspaper.
A Few Days Away
Thanks to some tax return money and some great folks we were able to get away for a few days. We took the girls to Hershey, PA and stayed at Hershey Lodge for a couple days so that we could go to the park without having to worry too much about Keith’s treatments or getting him over-tired. This was the first time we tried going anywhere overnight since our lives took a dramatic turn last year.
Things went surprisingly smoothly. I’m working on a post now about the experience. We learned a few things and came up with a few clever ideas before we left that other PD patients might find helpful before they hit the road this summer. Look for that soon.
The important part was that we got to take the girls away and celebrate Kayleigh’s graduation and the fact that we’ve made it through the last year. We had the opportunity to be together without having to focus on the day-to-day medical drama that our lives have become. We complained about the weather (it was rainy, windy and cold when we got to the park but the sky cleared by the end of the day), we rode some rides, ate stuff we didn’t normally eat, and basically acted like any other family for the day. It was a pretty special day for all of us.
Now that the fun is over it’s back to the grind, and paperwork, and advocating to get what we need. We’re waiting to hear on some things, trying to straighten out a few others and generally trying to make the most of the situation we’re in.
For those of you who follow the continuing Singer Saga on Facebook, you know that things didn’t exactly go the way I had hoped at the 2nd home visit. They went fine, it does look like he qualifies for the program, but we have a slight hitch. We were told that I cannot be his paid caregiver because we’re married.
It turns out that there is a rule in Pennsylvania about not paying people to take care of someone that they could profit from upon the patient’s death. I believe it’s supposed to cut down on the number of people trying to off someone who is sick so they can collect insurance. It’s a little scary to think that there were enough people willing to neglect or straight up kill someone they were supposed to love to get money that the state had to make a law/rule to stop them. At this point, Keith is worth more alive than dead, so I don’t really see a bonus to getting rid of him.
In theory, there are several ways around this particular rule. The spouse part is not written into one of the qualifications for one part of the program – so there is nothing in black and white there saying I can’t do it. There is also the possibility of getting hired by an agency that does home healthcare to work for them for Keith. Then there’s something about Keith technically becoming a business and hiring anyone he wants to work for him (the state requires that someone else handle the “business” side of it and has an organization that does things like taxes and so on). Both of these are possible options, we just don’t have enough information to move forward right now.
The other option is to have someone come in the house and have them take care of him. Someone who would have to be trained to do his dialysis and administer meds – an added expense most companies are not going to want to take on. But, allegedly, I would be able to leave the house and hold a full-time job while someone else takes care of him with the time between the actual caregiving moments billed to “respite” care (personally I’ve never thought of work as a respite, but ok). Neither Keith or I are very fond of this idea, for many reasons, and would really rather not go this route. Keith has said he would rather not do the program at all than have someone come in and look at him all day. Frankly, he’s just not that interesting.
As I’ve stated before, without the paid caregiver money we are in deep doo doo. Someone really needs to be around him all the time. So either I have to do it or we have to bring someone in. Either I get paid to take care or Keith or I find a job that lets me do both, and the options that let me do both are limited. I’ve been trying to make doing both turn into enough money to support us for about a year now, but so far it hasn’t worked. I’ve got a few irons in the fire, but I’m a long way from full-time money during the times I’m not working with him. There are down times (like as I’m writing this while he naps), so doing things like freelance writing works best if I’m trying to stay within earshot.
Where do we go from here? I’m still trying to figure it out. There are still options, I just need to figure exactly what they are and how to do them. I’m waiting to hear from the social worker and a few others with suggestions. All of it is theoretical until we hear from the Waiver Program and local services with all the official paperwork, but with everything we’ve been through I find a certain comfort in planning ahead as much as possible.
So we are still in a holding pattern. We’re okay for another month or so after that thing get…complicated. Again. We’re still hopeful, but nervous.