another bout in the hospital, but I learned something this time, as usual

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Regular Member

Date Joined Jun 2004
Total Posts : 42
   Posted 2/5/2005 11:04 PM (GMT -7)   
Well, I got another two week trip to the hospital. First time I went with my partially collapsed lung, yes, after waiting the 4 hours of excrutiating pain, it didn't reinflate, so Off I went. They sent me home about 5 hours later. Coughing continued, until I was coughing up blood. (Always fun). So I called PCH(Phoenix Childrens hospital), they told me to go back. Back I went. Sent home again I went.....
Let's put this is real perspective. lung collapsed...coughing so hard breaking blood vessels and severe chest pain. Doing back to back to back to back machines which make me cough even more. And the hospital keeps sending me home......
Well, I'm not fine. And after 2 more days went back to the hospital with another collapsed lung, PFT's at 45% (norm 90%) and horrible spasmic coughing. They tried to send me home AGAIN!!!! NO, I put my foot down and I personally called the president of the hospital (as I had his number due to another incident that took place a year ago with a non-licensed, non-certified therapist giving me the wrong medication and putting me in respitory distress for 18 hours) He told them to give me the workup. They took an x-ray again (they did it the 2nd time I was there)..showed, they did a cat scan. Both lungs are entirely engulfed in Pneumonia and I have a blood clot really close to the heart. And they were going to send me home.......... We learned that due to all my scarring, that from now on, x-rays just really are not going to cut it any more.....sigh
So, they finally admitted me. Placed me on major blood thinners, IV Levaquin and Cefepime (does the trick, but also have some pretty fun hillucinations on it.) and 80 mg of prednisone which sent the blood sugars raging. Plus all the meds and saline were in dextrose, so my blood sugars remained above 500 until I finally made a bet with the doctor. You put me on meds and saline that does not have dextrose for one night, and if my blood sugars go down you have to pay my bill. (hey, it was worth a shot ;-) ) They went down to 200, so if any doctor says dextrose (sugar water) won't make them rise, laugh in his face and demand non dextrose stuff. Still waiting for him to pay my bill ;-) No, not holding my breath.
So, they released me breathing at 62% to do IV meds at home. Fine and dandy, food is better, and there are not nurses coming at you with needles at 4 in the morning ;-) And I have my babies (timmy and Lily) to cuddle with :D
Well, after being home for about 7 days, I now have a major double kidney infection caused by the antibiotics (which also are what doctors would normally put you on to treat a kidney infection. Another stuck between a rock and hard place). Sigh again.
I now have a nice dose of vicadin though :D to take for the pain, but until my lung functions are back up to at least 85% they are not going to take me off the IV meds. (breathing at 72%) I'm getting there!
So, what did I learn. I learned that docs are idiots that believe dextrose (again sugar water) do not affect blood sugars.
I learned I am allergic to injection insulin....(I'm allergic to everything under the sun, not that big of a surprise)
I learned x-rays are not going to cut it from now on due to all the scar tissue, but as my norm is 95% and you have to be 30% to be on the transplant list, this may prove to be interesting.
I learned (which I already new just relearned) if you are sick and they just want to send you home from the Er, refuse. That blood clot could have killed me if I had just went back home.
For the first time in 24 almost 25 years they wanted to do blood gasses on me. FYI, blood gasses in CF patients will not give you accurate or useful info. It is the very last result thing to do. Ask your doc about them :D
I learned that when you call the president, the docs all of a sudden jump to your attention :) and if you have a port, make them use it. I have explosive veins and they refused to use my port the 2nd time I went in. After 5 tries for blood my arms and my ankle were so black and blue, they didn't want to touch me, but still refused to take the blood from my port. 3rd time I went in, (before the call), Oh sure, that's not a problem. I'll just get the nurse to put a needle in.....Yeah, put your foot down on that too.
I'm basically writing this a little to vent (thank you for letting me, it needed to come out) but also once again make you aware of the stupidity that you may come across in life. If you or your child says something is wrong, believe them. Not what is on paper, not what the doc says, believe your child. We get to know our bodies very well, every pain, every wheeze, every aching muscle, everything. So, when something changes we know right away. It may take time to find it, but I would say about 98% of the time there is something wrong. And always don't be shy about putting your foot down about your own and their care. If they have a port, make them use it. Contrast (for cat scans) can not go through the port, but blood draws and antibiotics can.
Like I said, the Er was just going to send me home with that blood clot and pneumonia. I don't want to think about if they had and that blood clot moved into the heart. I have already had two heart attacks, I don't need another one, thank you.
Thank you for letting me vent and ramble. Hopefully something useful did come out of this too. :D

Regular Member

Date Joined Sep 2005
Total Posts : 318
   Posted 12/3/2005 7:33 PM (GMT -7)   
This post is helpful info and would like to bump it up to the top!
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough" would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.

Regular Member

Date Joined Nov 2005
Total Posts : 40
   Posted 12/4/2005 12:46 AM (GMT -7)   
Hi Just want to confirm - doctors who believe sugar water doesn't bump up sugars are nuts. We had this fight with the nurses in my small town hospital - after showing them the pre and post sugar tests they finaly believed me and put me on saline instead. But I really wish we didn't have to fight so much to get good care! Interesting about the scar tissue - my xrays never show anything - even when I'm sick with a heavy staph infection and coughing my lungs up. Stachybotryis mould causes lung bleeds - yet that didn't show up on xrays either (CT scan not an option for that hospital). I've since moved and there is a CT Scanner here but a huge waiting list so dunno if its a viable option for the future but I will remember to ask my doctor next time she says I'm fine when I'm really not. Thanks for the post - and thanks for the bump!

Lauren Michelle
New Member

Date Joined Jan 2006
Total Posts : 19
   Posted 1/6/2006 4:54 PM (GMT -7)   

i hate art sticks.  its so painful.  im glad that you stood up for yourself!


good luck and stay healthy!

Lauren M Kelly
Proverbs 3:5-6
Trust in the Lord with ALL of your heart and rely not on yourself, in all times, acknowledge him. And he will make your paths straight.
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New Member

Date Joined Mar 2006
Total Posts : 5
   Posted 3/14/2006 3:44 AM (GMT -7)   
You REALLY should consider getting a different doctor, and going to a different hospital. I don't know where you live, but I live about 30 mins. away from charlotte, nc, and I have NEVER had ANY problems like what you had with any doctors or hospitals. UNC Chapel Hill is the largest and most advanced CF clinic in the country, people come from all over the world to go to that hospital, and I went regularly for the first half of my life. I don't know how feasable it would be, and I know it's a radical suggestion, but with problems as severe as your's you might want to consider moving close to Chapel Hill and going to that hospital. I have heard and experienced NOTHING but good things from there. If you can't move that far, you should at least try your very best to see a doctor there once a year or so. I think it would do you a WORLD of good.

New Member

Date Joined Mar 2006
Total Posts : 11
   Posted 3/14/2006 9:16 AM (GMT -7)   
I kind kinda relate  what u went through, I had really severe Phnemonia and kinda waited till the last minute to go to the hospital..when i got there i could barely breath..i went to emerge at the hospital and I got sent home and was told that I would get a call when they had time to give me an apointment...but i didn't go home..i stayed at a hotel and I went to see my doctor who admitted me emediately. The doctor who tried to send me home got in crap..and my doctor told me that I could have died in the night i was that bad...but i learned the same lesson...u can't always trust the doctors...u have to trust yourself.
Missy tongue
HI Everyone

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