Starting dialysis

[Lucinda]

Hi Guys.  I am jumping on to catch up when I can.  Thrilled about Gail and very sad about Glitter's husband.  Sorry I am not posting much at the moment.  I have been in hospital a lot lately.  Blood pressure dropped the other day, got dizzy, fell down the stairs and broke my foot.  Have been a real cow and not answered the phone because I am trying to finish off the magazine before I start dialysis on Thursday.  Sorry RichardM....I know you have been trying to contact me.  I look really comical.  Sitting here with my foot up on the desk, black and blue with bruises and surrounded by proof pages of copy up to the top of the computer.  To those of you who have suffered gout.....just as a measure for you, a broken bone is not nearly as painful!!  Those who haven't had gout, I hope you never get it!!

Anyhow, I am all ready for Thursday thanks to everyone here.  The dialysis training will go for eight weeks and I am well set up here at home now.  I have really struggled with the magazine because I constantly seem to be in a bit of a haze or fog.  Brain isn't working as well as it should be.  I've been lucky to get so much extra bonus time but now I think I can only surely feel better once I start.  I have elected for the six nights/eight hours.  Starting off slower than that but eventually I will be on that run.  Mind you that will all depend on my access.  I couldn't have a fistula and I had a false start with my graft four times so that will really dictate whether it is viable to go poking around in it nearly every day.

Once the magazine has gone to production, I will have a bit more time to get back and catch up.  I hope everyone is looking after themselves!!  Love to you all. xxx 

[swramsay]

Good luck to you Lucinda! I think you'll discover some time to focus on a few things during your treatments once you get the hang of it.
I began using my fistula about 3 weeks ago in-center. I started training for home dialysis this past Monday. I did my own needles on Wednesday. That was the biggest thing for me. I was able to take them out on my own as well. Love that numbing cream! As I've heard from so many others, doing my own needles is a very good thing. It's only been a week of training so far and the goal is to be at home in another week. Seems fast but I know a lot already and I think I'll be fine.

You'll be fine. Sorry about your foot. Low blood pressure is something I need to be careful of also - especially now that I will be at home should my pressure plummet while on dialysis. If  you ever begin to get dizzy again, sit down or bend over IMMEDIATELY upon the first sign no matter where you are.

[del]

Sorry about the foot lucinda!!   That fog and haze will start to clear once you start dialysis and things will become much more clearer once you start doing nocturnal!!!  Hubby left changing from pd to hemo too long and he got really sick from it. A few days on hemo and he felt a whole lot better.  Now on nocturnal he feels super!!!  In a couple of months you will wonder why you put off starting hemo for so long because you will fel so much better.

swramsay will you be using NXstage at home?  Will you be doing nocturnal or short daily?  Hubby does buttonholes and he says there is no pain at all. 

[swramsay]

swramsay will you be using NXstage at home? Will you be doing nocturnal or short daily? Hubby does buttonholes and he says there is no pain at all.

Yes, I'll be using NxStage. Starting out on short daily but my goal is to do nocturnal as soon as I'm comfortable with the short daily. If Davita won't work with me on the nocturnal, I'll have to switch to Northwest Kidney. My want my fistula needs to mature a bit before I start the buttonholes. I have no pain using the cream on my arm.

[RichardMEL]

Lucinda it's cool don't worry about me! I can handle you not answering the phone or not being up to it Just know you've been in my (our) thoughts and that was all. It's more important that you're OK and I definitely think once the dialysis starts to work for you that fog should lift a bit and you should feel more normal and able to tackle things.. Certainly hope so and your graft holds up. It's had a long time to mature so fingers crossed it will be OK. I'll be thinking of you come Thursday!

Oh and yes I've suffered gout I can but imagine foot breaking pain is less! GOUT SUCKS!!!!

 

looking forward to post Thursday updates when you can let us know how it is going, and my phone is always on if you need to talk (well ok not when I'm at the opera house Friday night lol ).

I hope the magazine is coming along OK. You are amazing with everything you take on!!! I am sure it will be stressful, but fine! Thanks for the update

[pelagia]

I don't know why I think this, other that what I've absorbed here, but I do...  I think you are going to feel 100x better when you get the toxins out of your system and when you have the routine of your dialysis down.  You'll get the hang of it and be able to do your work.  I am praying that you are going to feel better and that the fog will lift. 

[G-Ma]

Do watch that low BP feeling...any kind of falling is too dangerous...I've been there and still am sometimes...I am sorry about your foot and that gout.  I hope you get on track with dialysis and feel better.  Have a good week.   

[Wattle]

Ohh Cindy you love a bit of drama don't you! 

Starting a magazine and starting dialysis wasn't enough for you ...... you had to go and break your foot!  OMG girl stop moving for just a minute and catch your breath.  Maybe I should come up there and strap you to a wheelchair, that is bound to slow you down!

I wish I could be a fly on the wall when you hobble into training! I will be thinking of you on thursday. I hope everything goes smoothly and your introduction to dialysis is uneventful.   

[Lucinda]

Thanks everyone. Strange thing is that I am feeling better today than I have for weeks and in my latest bloods my creatinine had gone down again.  It is all too weird but definitely not putting off the start again.  Besides I have run out of excuses!!  Probably a good thing I am feeling a bit better before I start.  I did feel so "foggy" when I was exercising but since the fall I haven't been able to exercise and that is when I really noticed the fog.  I need a good run to clear my head!  I am having fun at the moment with this story about a haunted house that is on the market for sale.  It is a little farmhouse from the 1870's in a country town in New South Wales.  Really cute.  As soon as the mag is on the web I will give you the link.  I've certainly been driving you crazy about it for months now.  Anyhow, better get back to Casper!!!  Love to you all. xxx

[okarol]

You are still managing to juggle it all! I hope everything goes well with the magazine - can't wait to see it!
Take care of that foot - doesn't sound like it will slow you down too much.
Sending you lots of LOVE Cindy!

[pelagia]

You haven't been driving me crazy. 

Except that I really want to see a picture of those boots you bought in Italy!

[RichardMEL]

I will be in Sydney on Friday attending a concert at the Opera House so if Lucinda needs tying down or anything like that I will be close by!!!! 

 

[paddbear0000]

I'm sorry to hear about your foot Lucinda. But  I am happy to hear that dialysis starts soon. trust me, you will feel better soon. I've only been on dialysis for 3 weeks now and am already feeling much better. I actually started feeling better about 2 weeks in. I'm sleeping the rest of the day afterward, but everyone is different.

[Lucinda]

Well, that is day one out of the way.  Not bad at all but Wattle will love this.  I arrived at 9.00am for two hours of dialysis for the first day.  I left at 3.30pm.  Had a power outage 10 minutes after I arrrived and power didn't come back on for two hours.  First poke with the needles and straight through the wall of my graft!  Two hours of dialysis starting at 12.00noon and off at 2.00pm.  Clotting problems until 3.15 and then left at 3.30.  Can't wait to go back tomorrow!! All in all though, not a bad start.  Bit of a headache this afternoon and heading to bed but not such a shock to the system as I expected.  More reports tomorrow.  Hope everyone is well.  Much love. xxx

[paddbear0000]

I'm glad to hear it wasn't too much of a shock to your system. It sure was to mine! That stinks they went all the way through though. I haven't started using my graft yet. Next week hopefully. What happens when they go through?

[Joe Paul]

Sorry about the foot Lucinda, but glad your first treatment went OK. Hoping everything continues to go well, good luck 

[Lucinda]

It wasn't much of a drama Paddbear and evidently it is unusual for it to happen.  They just shifted the needle around a bit and they had to reset the machine and start over but it wasn't too bad just a little unnerving on the first day.  Headache is not good tonight but I think that is a bit of everything.  Nervous energy as well as change to the system but certainly a lot better than I was expecting.  Hope all is going well with you.  I am sure you will be feeling better once they start using you graft rather than your temporary access.  The needles are a bit of a breeze.  As a comparison, if you are having Epo or aranesp shots, they hurt more than the dialysis needles. 

[paddbear0000]

They are giving me my epo through the lines to my machine. I used to give myself epo shots a few years back, but I don't remember them hurting at all. I used super fine gauge insulin syringes to do it and injected into the fat in my stomach. Maybe that had something to do with it?

[monrein]

Hey Cindy girl.  I'm thinking of you a lot these days as you start the whole getting-used-to-dialysis business while you also hobble around AND do the mag start up.  I do believe that the expression "brute for punishment" might have been uttered specifically for you.  Keep up your attitude as I know you can and will and I hope you'll eventually take charge of your own cannulating too.   

[RichardMEL]

So glad the first session went... well.. okay... Of course how could your intro go without something happening?! Power outages, graft fun.... yep, that's Lucinda!!  just kidding... I am sure that things will settle for you soon enough - hopefully so! At least you coped with it OK and that's the important thing. And yeah no more aranesp needles - it can be done through the lines one minor MINOR advantage to dialysis!

Hope the headache goes away soon (Since I'm getting on a plane soon it may happen!!! hehehehe)

Hang in there and look forward to hearing more

[Wattle]

Hey Cindy,

Well thank God that day has come and gone. Not without the bit of drama you love so much    I would have been a little angry at the "through the graft incident", I think they could have been a bit more careful. I am also a little concerned over your statement "the needles hurt less than an Aranesp shot". WTF were you doing with the Aranesp injection? I inject mine into my stomach and I can hardly feel it. OK maybe its the amount of "padding" I have on my stomach.  Still, I think a 15gauge bears NO resemblance to the tiny needle on an Aransep injection.

Are you sure you didn't "self medicate" with a little drink or two before you arrived at the clinic?? Hhmmm     

[Sluff]

Lucinda, glad you are doing well with the whole dialysis idea. I remember how you struggled with just the thought of it, you have come a long way.  Sorry to hear about the foot, hope it heals quick.  Oh and about the tyeing you to a chair.. thats too harsh, but I can think of a better place to tie you down, if you want a volunteer, I would be willing    Just kidding dear.. I do hope things get easier for you. 

[Lucinda]

Wattle...I did my aranesp shots in my leg and I had the sureclick rather than the injection so maybe that had something to do with it.  Anyhow, second day went well.  I have another lady training and she is not keen on keeping up the home training.  She is having a real battle with the needles - she has been there a week longer and she has already asked to be transferred to a clinic because she is finding it all a bit overwhelming.  I think the training when you start is good because you have to keep your mind on something else all the time rather than what is happening to your body.  I have named my machine Merlin and he is the same one that will be coming home with me. First day I didn't watch the needles going in the second day I did and hopefully by the end of next week I will be doing my own needles.  The staff at the training clinic are all terrific.  Aside from a headache, everything else has been fine but they haven't started taking much fluid off yet so I won't speak too soon.  They told me my first day was a bit of a nightmare but if that is as bad as it is going to get then it should all be OK.  I think the time allocation is going to be the biggest huddle to get use to.  Can't say I hate it yet but give me time!!!  

[G-Ma]

       You are my hero L .........everything you are going through and still smiling.       

[Wattle]

   Cindy you are doing a great job. Starting dialysis is overwhelming and emotionally draining. I agree with Sluff saying you have come a long way and I am sooo happy you have.   

The time factor is a nightmare at first but it will soon become part of your daily routine. (I am doing an exchange as I type.) If you swap to nocturnal it will give your days back.

Good luck with the needles. They will be my biggest hurdle if/when I have to switch to haemo. Do you use the Elma cream first?