Be Aware when you go into the hospital

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Regular Member

Date Joined Jun 2004
Total Posts : 42
   Posted 8/1/2004 11:55 AM (GMT -6)   
Which yes, if you have cf or have a child with cf, may be alot.
Well, I tried to go on vacation. First one in over a year....Made it one daym before I ended up in the ER with 3 partial blockages. Sharp Memorial Hospital in San Diego is a wonderful place to be, but it is not the place that people with CF should go. They are very caring, but they just don't know what to do with you.
I was placed on the liquid diet immediately and put on a saline drip. 6,000 ml in less than 48 hours. Plus the liquid diet (so jello, lots of juice, italion ices (yum) and broth). Yes, they were measuring the amount of pee (about 100 to 200 cc's every 2 to 3 hours) that came out, but only after I went several times and the thing was almost full, because they were too busy each time I rang for them to look, so they thought everything was fine. Nope. Stomach started to grow to look like I was 6 to 7 months pregnant with fluid. (visual 5'2 h and normally around 105 lbs) I called their attention to this and they said they would tell the doctor, but would not stop the drip until talking to him. Who was from Greece and looked like a Greek God, thank you.
While my friend was visiting with me, I started to have chest pains, which increased and increased and increased, until I was in full congested heart failure due to over hydration. This is a real thing. And it can happen to anyone CF or not. It can cause kidney damage, lung damage, and heartattacks and other issues.
So if you or child are in the hospital, PLEASE make that nurse looks at that measuring thing (annoying as it is) and for squirrelly children, make sure they aim for that and not around it.
For the final confirmation though, I had to get two doctor opinions. The Greek God, who was not there at the time, said, oh, it must have been a mucus plug (thank you I've dealt my whole life with those. NOT A MUCUS PLUG), but the doctor that came rushing in said it was congested heart failure the next day.
As for my friend, he was fine through it all. Wanted to charge the nurses admission for the whole show.....he's just silly like that.
And one more things. If you are on vacation, do not get mad at your child for "ruining" the vacation. They have no control over it. I haven't had stomach problems in 10 years and had no clue until it hit me.

New Member

Date Joined Jun 2004
Total Posts : 9
   Posted 10/18/2004 6:32 PM (GMT -6)   


Thank God you're ok.  I have heard of this happening to someone at my same cf center.  But he did not make it.  What happened to you can be a very serious situation, as I'm sure you know.  It is very important that all CF patients know their bodies and when they think something is wrong they need to know it is ok to speak up.  I'm 25 and always just did what I was told to do, but in the last couple of years I have really took charge of my health care and listened to my body.  Only you can stick up and speak out for you.  Also it's important to know at any point you can refuse any medical treatment, if you're over 18.  Even though they wouldn't stop that drip, you knew it was the problem.  You could've taken it out yourself.  You're in my prayars.  Good luck with everything.  And know that you didn't ruin the vacation, atleast you had a good friend there with you.  Take care.


Regular Member

Date Joined Jun 2004
Total Posts : 42
   Posted 11/11/2004 1:05 AM (GMT -6)   
Sorry, it took so long to reply. System issues. Normally when I go to the hospital I go to the same hospital that I was born in. I know just about everyone on the 2nd, 8th, and 10th floors and they all know me on sight. In fact they bring all the newbie nurses in to get trained by me, since I'm not the kind to lay there and be the meek, 'okay, whatever you think is best." Okay, yeah, and because i have so many allergies, it's unbelievable, but I totally draw the line at the time they brought in their pizza to eat in my room when I was in pre op mode......Still need to get them back for that. But anyways, like you said, we get to know our bodies VERY well and when something is wrong, we do and say something about it.

But I was in a different hospital and different surroundings, and I got careless. They should have been watching, but I should also have pressed harder when the shorts suddenly decided to be 3 sizes too small.....which is a very interesting feeling.....

I'm not trying to scare people about going to hospitals, I just want you to be aware, these things happen and if you feel something isn't right, Even if the nurses and doctors tell you you are imagining it....then go with what you feel. They aren't feeling what you are feeling. You need to take charge of your care. If something isn't right, push it on them until they take notice and whether run some tests or whatever.

If they hadn't stopped it, then I would have turned the pump off, well, had my mother turned it off, I was a little busy.....:D

But for now, the heart is going strong. Getting over the FLU!!! and the 2ndary infection that has invaded the lungs. Blah. But I have started my own business (side for now) so life is good!

So. yeah. Take care of yourself.
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