They said it would all be ok ..(long post)

[KICKSTART]

Phew where to start ? except i feel like i have come to the end now. As you know i was due to have a blood transfusion on friday for my low hemoglobin. At this time i had been having terrible trouble with my breathing as well , which they said was due to my hemoglobin levels. On Wednesday morning after spending the night sat up i could hardly breath at all so i called the ambulance. They took me into hospital (not the one my renal unit is at , but the one nearest to me) I explained i was coming in for my transfusion on friday and how i had been feeling, so they contacted my renal unit. Then i had to have loads of tests done ..x-ray,egc etc but all came back clear , so they agreed my breathing was probably down to my levels. I spent all day there from 8am to 3pm and didnt even get a drink of water!. They then decided to ship me over to the hospital that my renal units at. When i got there i had to go through the whole story again and no one was bothered i hadnt done any pd that day either. They then decided to keep me in for observation and i said NO im going home . I hadnt eaten , drank or done pd all day so decided i would be better off at home if they werent going to do anything.
Anyway till friday i had to sit upright every night or i couldnt breathe , So i had my transfusion on friday and they said give it a day or two to notice a difference.
Well my breathing didnt settle down so i spent the night sat up again till this morning when i really couldnt get my breath again badly, so i rang the emergency doctor. He has been out and checked me over and still cant find anything wrong , my chest is clear and my lungs. So all he has said is go back to the hospital if it gets worse.
I have now spent since last wednesday sat upright at night and have had no sleep and im at my wits end, if i try to lie down its like im suffocating , if i sit up its like im gasping for air. I dont have any fluid overload or fluid on my lungs. I am so worn out now.

[kimcanada]

oh Kick I am so sorry to hear this...  I have been having no sleep nights also and can totally understand where you are at now, it feels hopeless, specially with not or little sleep.  I hope they find out what is the matter soon, please keep us posted.

Kim

[paris]

Kickstart, it is so easy for the doctors to say "it will be ok" when they have no idea how it really fells.  I am sorry this keeps going on. Hopefully, your hemoglobin will start to go up and you find some level of improvement.  It becomes such a vicious cycle; pain, no sleep, no relief, no comfort.   I really hope somethings changes soon and you can get a really good nights sleep.  Sending you hugs 

[Joe Paul]

Good luck, I hope it gets easier soon!

[2_DallasCowboys]

So, so sorry you are going thru this, will pray
it will be all better really soon!  Please take care!

Anne

[Romona]

 

[jbeany]

 
Hope they fix this mess soon!

[Rerun]

Wow, I would have thought it was fluid overload, but if you have ruled that out....  Well, don't lay down for a while.  It just panics you.  Sit up where you can breath (a little) and wait the few days.  Then see how it is and keep at them.

[okarol]

Tubes was having the same symptoms and they ended up removing fluid that had collected around his heart - but I imagine they have checked for that?

[RichardMEL]

The breathing thing really sends up alarm bells about fluid SOMEWHERE.... sheesh poor KS you can't seem to take a trick can you?

You are in our thoughts! 

[flip]

It sounds a lot like anxiety attacks to me. Shortness of breath is a primary symptom. I've had them in the past and take Ativan (lorazepam) before bedtime. Haven't had one in ages.

[twirl]

I would listen to Dr Flipbob
he was right about these attacks I was having as anxiety
now that I see it that way, it hardly ever happens
I took no different meds just advice from the "DOC"

[circleNthedrain]

Like okarol says, have them check for fluid around your heart.  I think they use ultrasound or echo, i really can't remember.  I had this problem last year and it was due to a virus I never knew I had.  I hope they can sort it out VERY soon.

[Ken Shelmerdine]

Kickstart what you are going through sounds awful. Are you having to cope with this on your own? Are you getting help and support from any of your family. Rita and I are only a few miles down the motorway so if there's anything we can do just ask.

[RobinM]

Hi Kickstart,

Maybe you still have fluid on you.   A few weeks ago, my blood pressure shot up.  I was sure that I was at my dry weight.  My ankles were skinny and I didn't have any fluid in my lungs.  However, I started taking off extra fluid during dialysis and over a kilo later, my blood pressure dropped back down to normal.  Oops!  Guess, I wasn't as heavy as I thought I was.   My doctor told me that fluid hides on me.

Hope your doctors figure out what is wrong and that you feel better soon.

Robin