No sleep for 2 days !

[KICKSTART]

Dialysis day yesterday , went in could hardly breathe , been sat upright for 2 nights , to full to eat for 2 days . Did my dialysis tuesday , came off ok , morphine big improvement .Got home and by 10.30 my stomach was visibly bloated and i couldnt breathe, certainly couldnt lie down. So sat up all night , next day monitored my fluids to 600ml, i was thirsty as hell ! By the time yesterday morning came round i was gasping, so i rang unit , told them i couldnt go on like this please will someone help me ! Sister came on phone, said not convinced it was all fluid , thinks my other problems with breathing are adding to it , because in fluid terms im not carrying that much, so was there any chance i could go see my GP ? Rang and got an appt for half hour later (rare as hell). My GP examined me , said it was fluid on my diaphram  pressing upwards , my slightly dodgy ticker and my copd. I told him it seemed i didnt have copd and had been for a scan and had to wait now 3 months for another. He said why did they want a scan anyway and what where they looking for ? i said i hadnt a clue ! Anyway he said he really couldnt help me out...great. Get to unit and sister waiting for me , with several suggestions. First one is do an isolated fluid pull for half hour, so at least i could breathe again .Pulled of 1400 in half hour !!!!. Doubled my morphine and gave me extra time on the machine but pulling at a lot slower rate . Did 5 hours came off at my dry weight , breathing good. SLEPT like a log last night ! Had 2 x 150ml drinks after dialysis yesterday , today have had 3x 150ml drinks so far and its coming up to t-time and im back to really bloated , cant lie down (have tried this afternoon)  I GIVE UP!

[Rerun]

Wow, sounds like something is going on.  You got down to your dry weight but are bloated again today?  Hmmmmmm.  Watch your fluid and try to challenge your dry weight by 500mls at a time.  Gosh, honey, I'm sorry for all you have to go through.  I'm glad the morphine is working.

Don't give up.           

[MooseMom]

There is nothing like insomnia to make the world look so much blacker.  I went through a period of about a week one time without sleeping much, and I really thought I was going mad, truly.

I just can't understand what is up with you.  It's such a mystery.  I just don't understand how you could get so bloated so quickly.  At least one strategy seemed to help for a short period of time...maybe they could extrapolate from there?

I can't begin to imagine the frustration you must be feeling.

[RichardMEL]

wow that is really wrong! I've never heard of anything like that I'm so sorry

[paris]

Oh, Kickstart, I hate that you are going through such a tough time.   It is good that the morphine is helping, but the breathing has me worried.  Something is going on and they need to find an answer for you.    I am sorry, sweetie.   Keep us posted.   

[KICKSTART]

I cant win ! did my session yesterday now the bloody morphine didnt work . 3Hours in and my head exploded , but stuck it out because i knew it was my 2 day break. Didnt acheive anything like the amount of fluid they wanted me to pull off either. The graph was well below the 'crit line' for the last 2 hours. Anyway came home had one drink of all night of 150ml and slept like a log. Watching my fluid like a hawk today. Everyone is convinced there is something else going on though , so that brings me back to the CT scan, so im going to see if we can push for some results and find out what exactly they did find, sod waiting 3 months for another one. One thought that did cross my mind , sat up in the early hours of the morning was ...i did pd for years and carried 1500mls or more around in my stomach , and it never stopped me sleeping or lying down. Yet the amount of fluid im going in with on hemo , isnt much different.

[RightSide]

KICKSTART,
what's your daily sodium intake?

I used to have problems myself, until (by sheer effort of will) I cut my sodium intake to about 800 mg/day.

Also, are you on sodium modeling (sodium profile)?  My neph is not a big fan of sodium modeling/profile; he agrees with me that it leads to a vicious cycle of more thirst causing you to drink more fluid.

So once we agreed to dispense with the sodium modeling in exchange for my cutting my daily sodium intake to 800 mg/day, I've done much better.

Perhaps you could try that.

[calypso]

You mentioned a "slightly dodgy ticker". Do you have congestive heart failure? That could account for your symptoms. Sorry you're going through this.

[billybags]

KS, I am really feeling for you. Keep pushing them, you should not feel like this.Hope you are ok to-day.

[KICKSTART]

Another night of no sleep last night despite having nothing to drink from 5pm onwards and very little during the day .
Calypso; I have a very small leak , but was told it was nothing to be concerned about !
Rightside; Im not sure what a sodium profile/modeling is?  But as for salt , i know its in most food, but i never have used salt either on my food or in cooking (even before renal failure!) you will also note im monitoring my fluids carefully , so i know i am not drinking more, in fact its less than half my allowance (1500.)
I just think there must be other factors making things so bad .

[Nephrologista]

So it sounds as though you're developing breathing problems with pretty small changes in your fluid status.  Have they done an echocardiogram on you?  If you have a pericardial effusion (fluid in the sac around your heart) then your heart can't expand as your blood volume changes.  It's not a common problem but it does happen.  That would be one thought I'd have in a patient who suddenly develops this level of distress with relatively small fluctuations of fluid.

[KICKSTART]

I had one over 12 months ago , that was when they discovered my small leak !  I have had an x-ray since which came back clear ..its this recent scan thats bothering me and the fact they are waiting 3 months to do another , when they have stated there is something there. Im going to approach the senior nurse tomorrow and ask her if she can explain whats going on the the Thoracic team and maybe get me back asap for that second scan. Im now at the stage where in order to eat or drink i have to make myself sick from the last lot , to have the next drink or food, otherwise i cant manage to eat , not brilliant i know , but it takes a small amount of pressure off my stomach for a short time.

[MooseMom]

Ricky G, I'm now getting really worried about you.  There seems to be something very wrong here; I am not liking this business of waiting for another scan in 3 months' time. 

[RichardMEL]

I don't know if this is at all possible, but I was thinking about your fluids. You're taking in absolutely next to nothing(I don't know how you do it!!  ) yet have breathing problems too which SOUNDS like it could be fluid related, yet your BVM suggests, if anything, you're a bit dry. Could it be that you have fluid "trapped" in your body that isn't refilling from those compartments into the blood stream, and thus able to be taken out via D? Could there be some other underlying cause for your breathing problems?

I sure hope they find out whatever it is soon - I can't imagine how this must be for you.

[pdpatty]

What type kidney disease do you have? I have PKD  and sometimes I feel my kidneys filling up my whole abdomen.

[texasstyle]

awww man, do I feel for you honey. It just sounds like such an awful time your going through. I'm so having to agree that if you are also having heart problems, that may very well be part of the culprit. Just the darned kindney condition is enough let alone having extra problems. I'm a little confused on what you mean by a 'small leak". I'm sure you are too. It's all so confusing isn't it? One thing I do know is that if you do have CHF (congestive heart failure), like it was metioned you can build up fluid in the heart sac. (pericardium) Most organs have a very thin membrane around them. With something like CHF your heart's ability to properly pump blood through it is compromised causing you to get "congested". Edema in the legs/feet are very common with this condition. I am anxious to hear what further testing shows. COPD is diificult too. Of course they're are varying stages of al these diseases. The little tiny sacs in your lungs called the "aveloi" do not properly expand or retratct with COPD. Has your DR. ever brought up oxygen to you? That may help with a lung condition but natrually keeping fluid build up down is going play a big part. I am so frustrated for you! Hna gin there. I know, easier said than done. We'll all be thinking of you