What would your reaction be to being told...

[Chris]

If the temp could have been changed, I would have done that years ago when I was on D. Tobad there isn't a portable electric blanket, could have used that then and now at doctor offices.

[Sugarlump]

Here they don't even supply blankets anymore (infection risk!!!!!)
You have to bring your own in

[natnnnat]

not only did I have a suitable elbow vein in my left arm, that both main veins under my clavicles are fine too for future work. And that my situation wasn't as dire as I had been told.
So I am home. New temporary tunneled femoral line whilst elbow fistula hopefully matures. Back to dialysis unit today.
And my potassium down to 3.9

Apart from all the other frustrations and annoyances expressed in this thread, I am really happy to read about these good turns of events 

[Sugarlump]

not only did I have a suitable elbow vein in my left arm, that both main veins under my clavicles are fine too for future work. And that my situation wasn't as dire as I had been told.
So I am home. New temporary tunneled femoral line whilst elbow fistula hopefully matures. Back to dialysis unit today.
And my potassium down to 3.9

Apart from all the other frustrations and annoyances expressed in this thread, I am really happy to read about these good turns of events 

I have to say, now I have recovered from the shock and drama of it all, after EIGHT years of poor access and being told unsuitable for fistulas, to feel this strong buzzing in my elbow where the fistula has been created really does give me quite a thrill. I am imagining (once it matures and I can have temporary line removed) the luxury of a bath once more!!! and maybe a swim! And the thought of decent access, allowing me to have home haemo could change my entire life...
The pot of gold at the end of the rainbow, after some very tough storms!!!
         

[Emerson Burick]

I have to say, now I have recovered from the shock and drama of it all, after EIGHT years of poor access and being told unsuitable for fistulas, to feel this strong buzzing in my elbow where the fistula has been created really does give me quite a thrill. I am imagining (once it matures and I can have temporary line removed) the luxury of a bath once more!!! and maybe a swim! And the thought of decent access, allowing me to have home haemo could change my entire life...
The pot of gold at the end of the rainbow, after some very tough storms!!!

Dialysis really changes one's perspective, doesn't it?

"They stopped twisting my ear while smacking me in the face! Now they're just smacking me in the face! Wahoo! Life is great!"

[Sugarlump]

Indeed
Not only do you learn what is truly important in life...
It gives you a kick up the backside to make sure all your paperwork is in order and stuff sorted...

My hb dropped terribly again after my surgery. 6.5
So I had three units of blood in a transfusion on Monday.
Now my bp has gone scatty from 176/120 to 99/50 and my pulse rate jumping from 70 to 120 beats a minute. At rest.
Making me feel most peculiar 
I feel like my heart is going to leap out of my throat at times.

they did blood tests and chest xray but can find nothing wring. But it scares me. 

[Grumpy-1]

Sugarlump   When you BP dropped, did you find other side-effects?   Mine took a big drop last week due to internal bleeding in the perennial cavity. I was in the hospital a couple days and they gave me two units of blood.  After that I discovered that my eyes won't focus as well as before and I'm seeing a white spot where ever I look.  Not sure this will clear up on it's own or I going to have to go see the eye folks.  Grumpy

[obsidianom]

i would agree that 1 possibility is slow internal blood leak at surgical site . The other would be late transfusion reaction such as a delayed immune response to antigens in the blood. Keep your doctors informed of ANY changes or worsening symptoms. Dont mess around with this.

[Sugarlump]

Sugarlump   When you BP dropped, did you find other side-effects?   Mine took a big drop last week due to internal bleeding in the perennial cavity. I was in the hospital a couple days and they gave me two units of blood.  After that I discovered that my eyes won't focus as well as before and I'm seeing a white spot where ever I look.  Not sure this will clear up on it's own or I going to have to go see the eye folks.  Grumpy

Actually Grumpy, I have been complaining that I can't read my laptop very well at the moment. Seems out of focus!!!! 

[Riki]

Sugarlump   When you BP dropped, did you find other side-effects?   Mine took a big drop last week due to internal bleeding in the perennial cavity. I was in the hospital a couple days and they gave me two units of blood.  After that I discovered that my eyes won't focus as well as before and I'm seeing a white spot where ever I look.  Not sure this will clear up on it's own or I going to have to go see the eye folks.  Grumpy

Actually Grumpy, I have been complaining that I can't read my laptop very well at the moment. Seems out of focus!!!! 

I was like that after my surgery too, but I blamed it on the pain meds.  I keep a magnifying glass next to the computer to help me read things sometimes, but I've been doing that for a long time

[Grumpy-1]

I've decided that is wasn't the meds, but the drop in BP that cause my eyes to change.  Now that the BP is back up and stable, the eyes haven't changed, so i guess it to the eye doctors to see what is wrong. Grumpy

[Sugarlump]

I recently spent £208 on new glasses yet I can't see the laptop well with them. They are supposed to be varifocal but I find myself looking over the rim a lot to figure out small print! 

[thegrammalady]

If they want to waste staff time weighing me fine. As long as they don't try to tell me haw much to take off.

[Sugarlump]

The latest is our critline machine has been at the menders for a month so no-one can check their dry weight.
As I have had surgery and put on weight from high dose steroids, I really have no idea what my dry weight is anymore, so when I fill in the form I always put a question mark!
They don't like that much!!! 
So get it mended then!!!

[Riki]

I lost weight after my surgery, and I don't appear to be putting it back on.  I know that the nurses are allowed to go up or down half a kilo without doctor's approval, so they've been bringing it down, but I think it needs to be made official, because I think it needs to go lower

[Sugarlump]

Still no critline 
Doc has decided to take entire August off!!!! 

My line is slightly red and sore today, not good news. But they have done linelock blood tests, ordinary blood tests and swabs and put me on IV antibiotics for 2 weeks in a pre-emptive strike.
So fingers crossed that sorts it! 

Last thing I need now is to get another line infection.

[cassandra]

Oh buggerdy, I'm keeping all fingers crossed here, and I hope the antibiotics nip the whatever it is in the bud. 

Good luck honey, and lots of love, Cas

     

[Krisna]

My center has a scale that allows us to print our weight out.  Although it doesn't always have paper in it so we have to write it down.  The staff helps/supervises certain people with pre and post weights to verify them but not everyone!  Making everyone do it would irritate me.  I don't think they should be making you do it if your weights have been fine.

[Krisna]

I stopped griping about the cold temperature when the director of the facility pulled a chair next to me and had a long talk with me about the reasons for keeping it cold (preventing BP falling and people getting sick).

This is probably obvious, but you can adjust the temperature at which blood is returned. I suppose you could ask them to turn it up a bit.

I've discovered that I like to have it returned a lot cooler than most people (possibly because I'm on tx drugs, which have kept my temp lower for the last 9 years). If I don't adjust it down, I'm usually sweating up a storm by the time my session is over.

We have heat panels above each chair and heat in the back of each chair.  Plus I bring a blanket.  A thin one in the summer and a sherpa wool comforter in the winter!

[Sugarlump]

Still no critline....
On two weeks of antibiotics iv at end of dialysis
Line is okay but still quite red/pink around it.
No results back from line locks or swabs as yet.

Fingers, toes and everything else crossed.
My fistula is four weeks old today 

[cassandra]

Every thing is crossed, and remember your fistula exercises, they work.

Love, Cas

[Sugarlump]

All swabs and linelock tests came back clear!!!! 
Keeping me on antibiotic course just to be sure
Fistula is still buzzing along happily (I have a stress ball for exercises)

[cassandra]

Glad to hear all that good news

     


Love, Cas

[Sugarlump]

Lousy dialysis session today.
45 minute wait in the corridor as machine not ready.
Get put on machine and the arterial line sensor not working.... they tried a flush and reversing lines (I kept saying it's not me it's the machine)
Eventually they came to same conclusion so had to take me off, reline another machine and set it up...
Two hours later, less than 5 minutes dialysis.
Because our centre closes at 6pm!!!! they cut short my time and the amount of fluid i could take off. Not a happy bunny for this to happen on a Monday.
Start the week off badly and play catch up all week...

I hate it when machines break down GGGRRRRRRRR 

[obsidianom]

Lousy dialysis session today.
45 minute wait in the corridor as machine not ready.
Get put on machine and the arterial line sensor not working.... they tried a flush and reversing lines (I kept saying it's not me it's the machine)
Eventually they came to same conclusion so had to take me off, reline another machine and set it up...
Two hours later, less than 5 minutes dialysis.
Because our centre closes at 6pm!!!! they cut short my time and the amount of fluid i could take off. Not a happy bunny for this to happen on a Monday.
Start the week off badly and play catch up all week...

I hate it when machines break down GGGRRRRRRRR 

Thats really lousy. They should have other back up machines ready and able to be on line in 15 minutes . Not good on a Monday after missing 2 days . Any chance you could go tommorow to make up for it? Its probably too late in England as you are 6 hours ahead of eastern US time.
Be careful of your fluids the next 2 days.
Really sorry this happened. Hang in there.