I feel like giving up

[KICKSTART]

but i will probably end up kicking a***.In plain english and to save you trawling through other threads of mine . Yesterday was my dialysis day , im doing tues/thurs/sat. I went in very fluid overloaded (to me im 8 kg over my steady 'normal' weight.)
They put me on the machine for four and half hours, so i asked the staff nurse to explain a bit more about things to me while it was quiet. I told him i was very overloaded and for the past two nights had had to sit bolt upright on the sofa and hadnt had any sleep, im also coughing like crazy and can hardly make it up the stairs.
He came back to me with they would only be pulling off 1500, which to me seemed nothing ( i used to clear up to 2200 on PD , 1500 was a minimum)
He also said that all my symptoms were NOT fluid overload but my very low hemoglobin 6.1
So they gave me a blood transfusion/iron/epo as well, while i was there.
Anyway towards the end of the dialysis i had only pulled off around 1440 and the nurse told me the machine was saying there was no more fluid , so i deffo wasnt overloaded and it was more than likely the low HB.
But i only i had to take one look at my body to see fluid , my face is puffy , my hands are puffy , my legs are well up ,even the top of my feet, yet he said the machine was saying there was nothing left to pull off me.
So i took his word for it, my weight was exactly the same as before i went on the machine as well.
Anyway home and guess what ..had to sit up all night as i still CANT get my breath, i feel just the same in that respect. My biggest concern now is WHAT the hell is going on ? Im not due anymore dialysis now till tues , but cant see me getting that far with no sleep and cant breathe. I cant ring them they are shut , so it means phoning the hellhole and all they will say is go to A&E (they did last time) Ok so i will probably chance doing a PD today but bloody hell , my life has to be better than this? I am living to do dialysis and not doing dialysis to live right now , i feel fragile enough with the horrible way i was treated and the change over to hemo , but for gods sake its got to be better than this ? why cant things go right ? What happening to me ?

[pointyup]

I am new here,  but I will watch out to see how you go.   I will start Dialysis by NOV and feel very sick right now.  I hope it is better than I am reading.   Good luck Mate       Pointyup.

[Jean]

KS, I feel so bad for you, but can't offer any help or explanations. You ahve had such a bad time of it lately, no wonder you get depressed. Every body says, it is hard at first, so dont even think thought of giving up, just please, hang in there and wait to see what happens.

[pamster42000]

This seems strange to me that a unit would let you go home that way. If I was your caregiver I would be taking you to the emergency room to get checked out.

[twirl]

I think you should go to the ER now --

[billybags]

kICKSTART,oh my love I know what you are going through, we are in England and are going through the same thing as you at this moment in time. There is light at the end of the tunnel, I think we are just reaching it. Well after all these weeks I hope so. As I said to you on my other postings HB is a big factor. my husband asked to see the neph on his last Hemo session, we were both scared because like you, he had to sit up all night to get his breath, I thought he was dying. The neph tried to take a cardiogram, because of his coughing it took her 3 goes , and apparently he has fluid on his lungs caused by to much fluid or as they say "the balance is not right" They have given him 2 blood transfusions and iron injections. Have you checked your dry weight from when you was on PD. It should be the same on Hemo.or near as dame it. They will get it right eventually, keep pushing. Ask for chest x-rays. I really feel for you, it is a bloo**y nightmare.

[Rerun]

Can you call your Neph and tell him/her what is going on?  You need some fluid off.  Here in the U.S. we can ask for a PUFF.  You go in and they just pull fluid for 4 hour and no cleaning.  Stupid not to do both while you are there but they don't.

You need some fluid off.  NOW!

[del]

Get yourself to the ER you are fluid overloaded.  You need to get some help, now!!!  Demand to see your neph or a neph!!!  Can't believe a dialysis unit is letting you go through this!!  Demand a chest x ray. Fluid around your heart and lungs is VERY dangerous!! Your dry weight should be the same if you are on hemo or PD.

[tyefly]

        Like what Del said... and others.....   go to ER.....  fluid can hurt......... and you dont want to have something happen and then  say I should of........be safe..... insist on getting more fluid off.....  NOW

[Bajanne]

I am really sorry to hear what a wretched time you have been having.  I can only reiterate what others have been saying - go to Casualty/Emergency right away!

[KICKSTART]

  Hi guys ..guess who has just got back from the hospital  and boy oh boy do i feel a lot better ! I ended up ringing the 'hellhole' this morning and telling them about yesterday, so they said if i could get in this morning they had a free machine they could put me on ..so off i went !  They have just pulled off 3500 in 2 hours !!!! and i feel fine for them doing it ! Now they only pulled off fluid , no cleaning today and guess what ..no blinding headache or anything ..so now thats got me thinking ??

[tyefly]

   Good for you ......     

[RichardMEL]

wow a UFR of 1750/hr is pretty high. In general our lot will only ever take a max of 5l off in 5 hours.. I hard heard trying to pull too much at once could be dangerous, but I guess if you have a heap of excess fluid then you'd have no problem taking it off - indeed I am glad you DIDN"T have any problem and feel better!! woohoo!!

[okarol]

KS - I am glad you got some help but I too do not understand why they don't listen to the patient! Who knows your body better than anyone?!?
Take care! 

[Brightsky69]

Kickstart - I am glad to hear your feeling better. Everyone was right you needed some serious help there. Fluid on the lungs is nothing to play with. That's what it sounded like you had.

Now that your feeling better maybe hemo won't be so bad. You'll get on a regular schedule and kind of level out and you should be ok.

Is the only reason your not going for a transplant is because you have no support? Is there no one that could be there for you if you got on the transplant list??

Best wishes!!

[CCStan]

KS, So glad you got relief !! Just wish wish the know it alls, will listen to the person !!  YOU knew best what was right for your body !!

Keep up the good work and insist on good treatment. 

[KICKSTART]

wow a UFR of 1750/hr is pretty high. In general our lot will only ever take a max of 5l off in 5 hours.. I hard heard trying to pull too much at once could be dangerous, but I guess if you have a heap of excess fluid then you'd have no problem taking it off - indeed I am glad you DIDN"T have any problem and feel better!! woohoo!!

Hi Richardmel yes i know what you are saying , the nice unit im on will only do 1l per hour , this is why i was in so much trouble , nothing 'extra was getting pulled off . I had 4 and a half hours yesterday and by the time i had my transfusion and iron my weight was exactly the same as before i had dialysis !  I still have about 3kg i want to get off so im going to ask them for 3 hours on tues and remove 1l per hour , i dont see why it should be a problem ? 

[Slywalker]

Glad to hear you are finally feeling better. Doctors and nurses not listening to a patient about their own body is such a common complaint and one of my total big time rants and annoyances with the medical world.

Hang in there Kickstart


 

[pamster42000]

I'm so glad you got some help...been thinking about you all day at work. If this happens again and the unit says they don't have room for you just go to the emergency room and dialysis can be done at the hospital. Again very happy you are doing better! 

[KICKSTART]

Thanks everyone for your good wishes 

[del]

Hi guys ..guess who has just got back from the hospital  and boy oh boy do i feel a lot better ! I ended up ringing the 'hellhole' this morning and telling them about yesterday, so they said if i could get in this morning they had a free machine they could put me on ..so off i went !  They have just pulled off 3500 in 2 hours !!!! and i feel fine for them doing it ! Now they only pulled off fluid , no cleaning today and guess what ..no blinding headache or anything ..so now thats got me thinking ??

Great that you are feeling better. I know how awful my husband felt when he was fluid overloaded.  Hopefuly hemo won't be so bad from now on!!

[Deanne]

I've been very worried about you. I'm glad to hear things might finally be turning around. 

[willowtreewren]

Good news, Kickstart! I hope that you will continue to feel better and start reaping the benefits of hemo now.

Best wishes.

 

[Jean]

Wonderful !!!!!!!

[billybags]

Kickstart, Thank God you have done something about this, I am so glad you are feeling a bit better. Please keep on top of this, get them to check out your HB at every session, once this goes up to a good level you will feel much better. Did you get a good sleep last night. My husband did the same as you, he went in for 2 hours on Saturday night,  just get fluid off and wow what a difference.They also keep giving him blood transfusions and iron injections. He actually walked to the shop yesterday to get a newspaper, first time for weeks.We are thinking of you.