Battling CIDP: David Watts Talks Hospital Woes and Treatment Struggles
In short
A short update from David Watts after a weekend hospital admission for his next PolyGam treatment for CIDP. He recounts five attempts to get the drip in, being moved wards at 8pm, being woken repeatedly to straighten his arm, and an inconclusive muscle biopsy result. Days lost to sleep afterwards, and a closing plea for ordinary kindness.
Why was David in hospital this time?
He went in on the Friday for his next PolyGam treatment for CIDP. Unusually he was placed in the cardiac ward rather than his normal oncology and urology ward, or the surgical ward he sometimes lands in depending on bed availability.
What went wrong with getting the drip in?
It took five attempts before the line went in, eventually sited in the crook of his arm and pointing upwards. He was told that was simply how it would have to be for now, and instructed not to bend his arm.
What did the muscle biopsy on his leg show?
The result came back inconclusive, despite the scar left behind. As David put it to his doctor, he had essentially paid a lot of money for a scar in his leg that means nothing. Further blood tests have been ordered, with results still outstanding.
Why did the nursing staff move him wards at night?
At around eight in the evening a nursing assistant told him he had to move, because the chief nursing sister wanted the ward ready in case surgical patients arrived the next day. The three remaining patients were shifted into another room.
How did being moved affect his OCD?
It unsettled him badly. He needs to be in a corner by the window, and in the new room he was in the wrong bed, in the wrong place, with the bathroom on the opposite side. He describes it as freaking him out.
What happened once he tried to sleep?
He was given more medication around half past nine, then woken repeatedly by staff tapping and pushing him to straighten his arm. When he bent it in his sleep the machine alarmed, which interrupted the night staff, making him, in his words, a massive inconvenience.
How did the change in treatment days affect his recovery?
Normally he goes in on a Thursday and returns on a Friday, which suits his OCD. This time it ran Friday to Saturday, and he has no clear recollection of the weekend. Sunday felt better, then Monday he was wiped out and slept through.
What do the shirts he wears mean?
They carry a message he and a group of friends settled on: 100% all in. Whatever they do, they do it fully. He notes he ought to have been clearer that it wasn't meant to apply on the disease front, though at the time he wasn't.
What does he ask of listeners at the end?
To be kind, whether or not they have one of these diseases. He argues the world needs more kind people, that we have forgotten what it is to be human, and that it comes down to simple things like asking someone if they are okay and genuinely caring.
In their words
Five tries it took them to get the drip in. Eventually, they did it sort of in the in the crook of my arm.
So does that essentially mean that I paid a whole lot of money for a scar in my leg, which means nothing?
Suddenly I was in the wrong bed, in the wrong place because I needed to be in a corner by the window, and the bathroom was on the opposite side. So that freaked me out.
At the moment, unknown disease 1, David, 0. We'll keep on going.
This world needs more kind people in it. Okay? We've forgotten what it is to be human. Start being human. It's the simple things, man.
Key takeaways
- Five attempts were needed to site the IV drip, and the resulting position meant David was told not to bend his arm.
- The biopsy testing for polymyositis came back inconclusive, so more blood tests are being run and the diagnosis remains unknown.
- Being moved to a different room late in the evening disrupted the spatial routine David relies on to manage his OCD.
- He was repeatedly woken through the night to straighten his arm because the bent arm set off the machine.
- Shifting treatment from Thursday–Friday to Friday–Saturday left him with no clear memory of the weekend and a day lost to sleep.
- David frames the current position as unknown disease 1, David 0, and intends to keep going until there is a diagnosis and a plan.
Show notes
Welcome back to another episode of "Watts Involved." In Episode 253, our host David Watts shares an update from a turbulent weekend that started with an unexpected stay in the cardiac ward for treatment of his CIDP. David recounts the various challenges he faced during his hospital stay – from the struggle of multiple attempts to insert an IV drip to being shuffled around by the nursing staff late into the night, exacerbating his OCD and disrupting his recovery routine. Despite these hurdles, David remains resilient, sharing his reflections on the importance of kindness in dealing with everyday challenges and chronic illnesses. In this candid episode, David not only updates us on his health but continues to spark meaningful conversations around the realities of living with autoimmune diseases. Join us as we delve into another heartfelt and engaging talk with David Watts.
Frequently asked questions
Why did he have to take medication from the nurses rather than his own?
He says the hospital treats patients like children: if you bring your own medication in, they take it away and dispense it to you themselves. He had to ask for it when he wanted to sleep.
How did he feel about the previous episode he published?
He watched it back and was horrified, saying it showed what ADD can do to someone who is tired, in pain and unmedicated. He resolved to make notes next time, then recorded without any.
What does he say about the hospital food?
That it is not the greatest, and he would rather state that plainly and move on than dwell on it.
What is he hoping happens next with his health?
That at some stage he will know what is wrong, that there will be a plan to start fixing it, and that he can then examine the other things he thinks might help.
Transcript
David Watts — Recording in progress. Alright. Well, another episode of what's involved. Let me just give you some of the background. I went into hospital on Friday for my next, polygram treatment for the CIDP, and, well, stuff happened. But first and foremost, let me tell you, the previous episode, I watched back. And even though I published it, I was horrified. It shows just what ADD can do to a person, particularly somebody who's tired, in pain, and not medicated.
David Watts — So, yeah, I resolved then and there to at least make some notes about what I was gonna talk about and then promptly switched on my microphone this morning and made no notes. So, yeah, just a quick update. So I went in on on Friday, ended up going into a different ward. So normally, what we do or what happens is I either go into the the oncology and urology ward, sometimes surgical ward depending on beds. This time was the cardiac ward, which isn't too bad except for the fact that, it took them well, you probably you probably can't really see too much here, but 5 tries. Five tries it took them to get, the drip in. Eventually, they did it sort of in the in the crook of my arm. It was sort of there but pointing up.
David Watts — So then, I was told, that's just the way it is for now, son. Don't bend your arm. And being the, you know, people pleasing person that I pretend to be, I said, okay. No problem. So they got that done. Julie started off with, the PolyGAM, and then, test results came back. Remember, we talked about the dirty, great gas in my leg where they were testing for polymyositis. It came back as inconclusive.
David Watts — So as I said to my, my doctor, so does that essentially mean that, I paid a whole lot of money for a scar in my leg, which means nothing. So they did they're doing more blood tests. I don't know what the results are gonna be, but, back to back to, the night in hospital. Hospital food's not the greatest, Let's let's just be honest so we can get past that. But here's the thing, and it's never happened to me my life before, like, at night. In walks, one of the nursing assistants and says, you need to move. I'm like, okay. How would you like me to move? Is this some new form of physio that I must do? No.
David Watts — No. You guys and there were 3 of us left in in the ward by that stage. The others had all gone home. Just let me make that clear. They didn't just go yeah. They went home. And we said, okay. Why? No.
David Watts — No. Because the the the chief nurse nursing sister, she wants to get the ward ready for in case there's surgical patients tomorrow. So I said, they gotta do this at 8 tonight. Anyway, they then proceeded to move the 3 of us into another room. Now I've mentioned to you before my OCD and stuff like that. So suddenly I was in the wrong bed, in the wrong place because I needed to be in a corner by the window, and the bathroom was on the opposite side. So that freaked me out. So then I said, listen.
David Watts — Okay. Well, I'd like to go to sleep now. So can I please get that my medication? Because they treat you like children there, and they take away your medication if you bring your own in, and then they give it to you. Anyway, round about half past 9, they decided to give me more medication, took that, went to sleep, and then proceeded to get woken up every, I don't know, however often, with them sort of tapping me and, you know, pushing on me going, wake up. Straighten your arm. Because, obviously, I was a massive inconvenience because when I fell asleep, I bent my arm. And then the machine would go off and that would interrupt the night staff's sleep, and we can't have that. So I made it through.
David Watts — But I gotta tell you, this treatment was weird because, normally, I go in on Thursday, come back on a Friday. Works for my OCD. I've dealt with it. This time I went in on a Friday, came back on a Saturday. I have no clear recollection of the weekend. Sunday, I thought maybe I'm I'm I'm getting, you know, getting over the side effects and I'm feeling better. And yesterday, I was wiped out. Slept.
David Watts — Slept. Slept. Slept. Slept. Slept. Slept. Slept. And then last night as well.
David Watts — So I thought I would give you, just a little bit of an update. So, at the moment, unknown disease 1, David, 0. We'll keep on going. And, the idea is that at some stage, I'm gonna know what's wrong. We're gonna have a plan to start fixing it, and then I'm gonna be able to examine all the other bits and pieces that I think might help. Oh, somebody mentioned, to me the other day, gave me a chat and they said, tell us about your shirts. This is it. Can you if I go back and move to the side there we go.
David Watts — So if if you can see it, it needs to be mirrored. But, essentially, it's something that, a group of friends and I have decided is it's a 100% all in. So whatever we do, we're doing it a 100%, going all in on it. I thought I needed to be a bit clearer and say I wasn't on the disease front, but sadly, I wasn't at the time. Anyway, so, that wraps it up for me. That's where we are. That's the story. It is now I'd love to say Monday morning, but it's a Tuesday morning, and onwards onwards and sideways is what I say.
David Watts — Each and every one of you look after yourselves. Take care. Be kind. And, specifically, as I mentioned before, even if you're not suffering from any of these weird diseases or whatever, This world needs more kind people in it. Okay? We've forgotten what it is to be human. Start being human. It's the simple things, man. Just caring for people, asking somebody if if they're okay and really really caring about it.
David Watts — Talking about really caring, do me a favor. If you haven't, please like and subscribe down there. Apparently, it makes this new face tube thing. It it it does wonders for the, algorithm. So, hopefully, more people need to see it than the people that need to see it can see it. I'd love to hear from you. Please, you know, drop me a comment in the comments. Let's talk.
David Watts — It's all about discussing. It's all about, you know, and even if there's, like, a group of of people who have autoimmune stuff, let's talk about it. Love to love to hear what you have to say. And so until next time, you keep well. Cheers.
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