Starting home training soon

My neph’s team finally talked me into it. I’ve been on the fence about PD vs HD, driving myself crazy for months now. I’ve known for a while that HD would be a better choice for me, but have been worried about the needles and my non-cooperative fistula. Well, I’ve been reassured that I can start the training using my catheter until we get my fistula going (might need a revision), and the nurse is going to start buttonholes for me and then teach me how to use them. Dull needles should be easier for me psychologically.

This is a brand new program for the FMC group in my area. There’s only one training nurse covering a lot of territory. Her first patient was a comatose man on a ventilator being cared for by his son. So I’ll be her first awake patient, her first noctural patient, the first patient she’s ever trained to self-stick, and the first patient she’s ever done buttonholes on. If I make it through this, I want a plaque AND a cookie!

The up side is that since FMC has hired this nurse and set up a training room in a new facility, they are eager to get patients into the program. And the up side for me personally is that I’ll have this nurse’s undivided attention, being her only patient in training at the time, and she’s both willing and able to be flexible in every respect. We’ll keeping trying everything until we come up with what works. She’s even said she’d sleep over at my house that first night at home, if that’s what it takes!

I really feel it’s her positive optimisim that’s going to get me through this, and I can’t wait to feel better! Do you know, when we got our monthly labs back the other day I was shocked to see that my creatinine is actually higher now than when I started dialysis? That’s what I get for using a catheter only 3.5 hours a session! It was 6.something in October and is now 8.something! (unless of course I’m misunderstanding the lab report :oops: )

Ooo, and the neat thing is my parents run an antique store and they’ve got an old medical cabinet for me. When you open the doors a light comes on and shines through the glass shelves! Doesn’t take much to tickle me pink!!

Karen

Congratulations!

You know, I don’t think that creatinine itself is really that useful as a measure of dialysis adequacy for conventional dialysis, but it does give at least a good comparison.

When I was on hemo 3 times per week for 3.5 hours, my pre-tx serum creatinine was about 600 umol/L (6.8 in US terms), and about 325 (3.5 or so in US) post.

On daily nocturnal, it’s about 325 (3.5) pre and an astounding 85 post (that’s 0.96 in the US)! That’s like a person who doesn’t even have kidney disease, let alone kidney failure.

And the same goes for phosphorus, which for me isn’t even out of the normal range pre-treatment despite eating a lot of cheese and other dairy - and everything else.

So, you can expect dialysis which is as good as it can get.

Good luck. If you find it hard the first week of training, just persevere through it. It’s easy once you know what you are doing. At first, you are trying to just follow the check-list as you close and open various clamps, but once you understand what’s actually going on, you know why this clamp is open and that one is closed, and it just becomes second nature.

Pierre

Hi Karen
Congrats on your decisions. I, like you was going to do PD and then decided on hemo (mainly because of swimming and lots of sweaty exercising, but I guess also body image issues came into it as well and also our climate). It is nice to know it is still there if and/or when we need it. What is great about hemo is after you have finished treatment and packed it all away, you don’t have many reminders apart from the “vampire marks” on your fistula.

The mind plays funny things when you start to needle yourself. I didn’t have more than a couple of days to think about it which for me was a definite advantage. I think if I had focused on a big sucker of a needle piercing through the skin into the vein too much I would kept fainting. I did the first time I dialysed a couple of days earlier as the new and inexperienced nurse missed my little fresh fistula and you can see the resulting bruising. Not a great introduction!

Buttonholing is WONDERFUL, what a relief! You will love it!

I have included this pic of my first attempt at putting a cannula in (complete with the bruising). I was amazed how easy the needle slipped in and how calm I was. It really doesn’t hurt as much as you would expect, most of it is just “the mind thing”.

PS Before anyone asks, my wonderful home training nurse has VERY clean hands and is not actually touching my sterile arm at this point. Gloves are just about to be put on after photo shoot.

Cheers 8)

Beachy, nice photo!..I noticed you use glasses when inserting your buttonholes…funny thing is that I do to!..

Thanks Sherri!..(my training nurse) :stuck_out_tongue: …actually, on my training day didn’t realize i needed glasses! Then Sherri comes to the rescue with an extra pair she had as backup…dang, I still owe her a pair!

Hiya Gus
Specs for needles, definitely, not good to see double there. Hmmm, also noticing starting to see double on the roads, could be dangerous! :lol:

Must add, these aren’t buttonholes I am creating, this is the first of several months of literally “stabbing in the dark” to find the best spots on a new fistula arm. :roll:

Beachy, you look like a pro, you really do :slight_smile:

Funny, I had to buy some cheap magnifying glasses when I started buttonholing. I wear glasses anyway, but they were useless for that. Buttonholes too close, and the little holes were too blurred.

I wasn’t too sure about how I would react that first morning I went in for training either. It becomes old hat after a while, but I think we sometimes need to remind ourselves what a huge accomplishment this is!

Pierre

Well it’s only 4 days away and I have to do my first stick at starting a buttonhole. Hope I end up as accomplished as you guys are. Beachy, I kind of worry about fainting myself. By the way nice pic.

Thanks guys! I’ll only be running every other night, not nightly, so I’ll only be getting 2 extra treatments a month (3 days one week, 4 days the next). According to my neph, insurance doesn’t cover these two extra treatments, but FMC feels so strongly about this program that they will be picking up the tab for the extra days.

I’ll be counting on you all to teach me (and my inexperienced nurse) the tricks of home hemo. Pierre, do I remember you saying once a long time ago on your board that you used a BP cuff as a one-handed tourniquet?

And speaking of BP, my nurse said we could probably “get away with” checking my BP every 30 minutes instead of every 15 minutes during the night - what? Do any of you wear the BP cuff to bed? Don’t remember where I got the idea, but I thought it wasn’t necessary.

Beachy, I’ll try to keep that picture in my head of you looking so calm and confident when I do my first stick. I cried while learning to give myself an epo shot!

The home inspection to tell us what we need to do to the house is on the 4th and we might start training as early as the 10th, not sure yet.

Karen

We don’t check BP during the night. It’s turned off. I only do it manually before treatment and as part of the first “round” shortly after starting. As long as BP isn’t too low before starting, nocturnal is gentle enough that you don’t get hypotension - typically, anyway. You’re just not taking enough fluid off per hour. By Ok at the start, I like to see mine no lower than about 120/70, but I’ve dialyzed starting at 115/65 without any problem. When it starts getting low like that, it’s because I’ve gained real weight and I need to raise my dry weight a bit.

I think you’re referring to when I said I had a tourniquet that can be operated with one hand. It’s just one that’s easily available on the market. The hospital supplied mine, so I don’t know exactly where they get them. The brand is “Propper”. You’re going to need one if you use a tourniquet, unless you’ve always got a helper. It’s just to firm up the buttonhole a bit. You don’t tighten enough to cut off blood flow. It makes insertion of the needle a lot easier.

I’m sure I can speak for everyone when I say that any way we can help, don’t hesitate to ask. There are little tricks for doing it alone that even an experienced dialysis nurse might not realize.

When they inspect your house, see if there’s some way you can have the RO in an adjoining room or maybe a closet that closes. The RO is the noisiest part of the whole system, and if you can have it outside of your bedroom, so much the better. If so, they can run the hoses through a wall or something. Also, make sure that the dialysis machine ends up on the side of the bed where your fistula arm is when lying on your back. That’s the best arrangement if you can do it. The techs who install these don’t necessarily think of that.

Pierre

If you have to mix your own bicarb, I would recommend going to a home depot or someplace and buying one of those $25.00 plastic sinks. We put a drain in the floor and just have the sink sitting over the drain so it can be removed. It’s a lot easier to fill the jugs this way and saves on the mess.