I am starting HemoDialysis tomorrow 29Mar

[Bajanne]

I am glad that things have kind of stabilized for you.  They tend to after a while.  I did some knitting on dialysis some years back - a fancy toilet tissue cover!  I must think about doing some more knitting.  Keep on keeping on and keep us posted. 

[RightSide]

For me, it's no big deal at all.

In fact, sometimes I'll forget to put the EMLA cream on--but even without it, the pain is no big deal.  It's a momentary sharp twinge that lasts a second or two, and that's it.

For any type of pain, meditation can help put your mind in a different place.  I've used it effectively even for surgeries where I was sedated but awake, and the pain broke through the inadequate anesthesia I had been given.

[MooseMom]

I think it's a great idea to knit!  It's great that your body is responding well, so now you have to work on getting your mind to cooperate.  Four hours is a long time to sit there doing nothing, so if you can find something productive to do, then you will be well ahead of the game.  I know myself well enough to know that I would spend the whole time blubbing and whining, and then I'd get utterly bored with myself, and only THEN would I find something interesting to do to occupy my time.  I joined the library in anticipation of having plenty of time to read.  Maybe you could knit a vuvuzela....

[Des]

Knitting worked ok for a while but the arm  with the fistula can not be bent too much so I got a cramp.... but  I knit for the first hour or so.

I am really battling being away from the family.... we do alot of nice things together in the evenings and now WE don't but they still do it without me.

I missed out on the action netbal final that my daughter played on Monday night. They got gold medals and I wasn't there   I missed out on her "flipping" her first pancake. and lots of other good stuff..... I feel left out.

They are now bonding with hubby and I am jealous!
I cried during dialysis last night....... This is really a raw deal. 

[carla13]

That's horrible. I feel for you. This disease takes so much away from us and it is really cruel. I'm sending you a hug ( one of many) and my thoughts are with you.

carla
xx

[Des]

Thanks a mil for the hug.... I just wish this transplant thing would happen soon.
That is the only thing "forcing" me to go. I am scared that my hope on a transplant will never be realised and what then?

aaaah crap.... crying again.

[MooseMom]

Listen, I think this feeling of missing out on family stuff because of D is a very serious matter and really needs to be addressed.  The emotional impact of chronic illness is so overlooked, and NOW is the time to figure this out.

I have a suggestion.  First, speak to your husband about this.  Enlist his help.  While I think it can be a really good thing for your DH to have the chance to bond with the kids (so many dads either are too tired or don't have the time or don't have the inclination), I think it might be a good idea for you and him to create some sort of special post D activity for all of you, something that is reserved ONLY for ALL of you.  When you get home from D, what do you usually do?  Do you usually have some free family time in which you can do something special?  Even if it is only, say, making TV snacks and watching a show together?  Or if you go to bed, maybe a mom's bedtime story?  Regarding your daughter's gold medal, perhaps they could re-enact the award ceremony for you!  That would be a laugh!  I know that you will still miss family stuff, and it sucks, but I also KNOW that with some creativity, the family can adapt and can do special things for you with a view to make you feel included.

And I understand the fear that transplantation may never happen.  I feel the same fear and also ask, "what then?"

[Des]

Thanks for the nice reply, I will try to use the other nights and to do some fun stuff... as I get home only at 21h45 at  night - they are mostly asleep already by then.  But on the off D nights I have to catch up on cooking for the next two nights or do some mending or working on schoolprojects.

Time is something you can never get back, and I am "wasting" lots of it to gain some at the end .... ")

[Des]

Our unit is going over from HD to HDF machines soon. I have had only bad stuff happening on HDF so I discussed this with my doc and I am very happy to say I don't have to go over to HDF as my potassium is low - this HDF is too efficient and removes lots more than normal HD so it leaves me with very little potassium and my heart goes into a wacky rythm.

Yeah!

[Bajanne]

I have never heard of HD and HDF machines.  CAn someone explain them to me.  How do I know which kind my unit is using?

[kitkatz]

Can you find a nocturnal unit.  That way you could do it at night.  I have my evenings at home until 6:45 or 7pm then do dialysis 7:30 to 3:30. You might find later times wherever you live.

[Des]

I have never heard of HD and HDF machines.  CAn someone explain them to me.  How do I know which kind my unit is using?

I can try to take pictures of it for you.... you must ask your unit's manager.

I think Okarol can get us some info.

I believe it is 40% better and it is the absolute bomb! but it takes out more good stuff too. (in my case too much potassium is taken out)