Anyone else have these problems?

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New Member

Date Joined May 2009
Total Posts : 2
   Posted 3/20/2010 10:30 PM (GMT -7)   
I am a 20 year old CF patient, diagnosed at the age of 3. For years as a patient in the pediatric clinic, I had no problems. Between the ages of 10 to 19 I was only hospitalized twice, and one of the times was later determined unnecessary (I was hospitalized for pneumonia, and after they determined it had not gotten any better I was sent to a clinic in another province and was informed I had asthma and a deflated lobe which could have been fixed had they gotten to it sooner)
It seems that as soon as I had been admitted to the Adult Clinic, that things spiraled out of control. I had no problem with my doctor at first, as seemed find with them. But, after awhile I started getting very ill. After a major battle and much testing I was hospitalized twice, months apart, for pneumonia. Once I was released I was forced to quit my job (I was to sick for my boss to handle, apparently) and had to go onto welfare.
So, after taking work related stress out of the picture, I got sick yet again. I went to clinic for a follow up and it was dismissed as a winter cold. They then informed me they could not locate any of my blood tests or sputum records from the past 6 months. They claimed it was due to their computer systems being upgraded. So they had no idea what my last test results had shown, since they didn't have them. Also, the doctor never even listened to my chest. He had sent in intern in an hour before, who listened to me. The only thing he did was walk in, shake my hand and ask how I was feeling. I said at that moment, I was which he replied "Great! I'll see you in 6 months", then left.
So I left, slightly angered, and kept going for another few months until I got so sick I could not take it anymore. 5 visits to my local Emergency Room, as clinic is held here on only one day and my doctor was out of town for a few months. I was placed on multiple oral antibiotics for pneumonia for several weeks and on my final ER visit they had informed me they spoke with my CF doctor who told them to place me back on the meds and call the next day to make a follow up appointment.
So the next day I call, and get clinics voicemail. I leave a message explaining what I was told in the ER, and asked them to please call me back with an appointment. Well, I wait. And I wait. Finally clinic day actually rolls around and I have still received no telephone call.
I then get a text message from my mother who informed me that they had called her house asking why I had not gone to my appointment. We informed them we never received a call telling us a date or time, and they claimed that their secretary had written down that I was completely aware of the appointment and time...even though no one had ever contacted me.
They also inform me that there is no available appointments for another month as my doctor will not be around. We had to demand a referral for another clinic in another province (he is the only doctor for our province), before they "suddenly" had an opening a week later.
It was unbearable. I was coughing to the point that I would vomit, and I could not walk from my couch to the bathroom (2 feet) without running out of breath and falling into a coughing spasm.
I could not even laugh.
We finally got into the appointment where they decided to place me on home IV treatment for pneumonia and see how things go.
I -never- had this many issues with my old doctor.
Test results are being lost, we have to yell at nurses and doctors just to get anywhere (which I highly dislike doing).
What hurt the most, I found, was when I was waiting to have my PICC line put in a week ago and where told that my medicine hadn't been mixed yet, I would have to wait hours and hours to have my first dose, etc, my mother was explaining to the nurse how she felt. She then said "Look, I know you guys don't care if my daughter lives or dies, but I do" to which the reply was "Well...unfortunately sometimes it happens".

This is really more of a rant than anything, but it's getting frustrating. I'm attached to two IV pumps, and I seem to be getting worse.

And yes, I do still take my mother to clinic with me. I'm still her baby girl.

New Member

Date Joined May 2009
Total Posts : 2
   Posted 3/21/2010 9:14 AM (GMT -7)   
I'm sorry to hear you had to go through so much :(
Sadly, we only have one CF doctor in our entire province, meaning finding another one really isn't possible. Although I have contemplated the almost 4-5 hour drive every few weeks just to see the CF doctor in the next province.
Your friendly neighborhood hippie

New Member

Date Joined Mar 2010
Total Posts : 2
   Posted 3/21/2010 7:23 PM (GMT -7)   
I find that the change from the friendly environment of the child's to Adult's can have a massively negative affect on us CF. It's also the attitudes of the Doctors as well.

When I first went from Child's to Adults I got really ill and by the time I was twenty there were talks of a lung transplant. I switched doctors to someone who really cares and she got me better and gave me an extra two years that I might not have had.

Alot of it really depends on how much your doctor cares. If the doctor shows no concern then the patient doesn't show concern and if neither care then your health drops. It's a messed up cycle.

Veteran Member

Date Joined Aug 2006
Total Posts : 9657
   Posted 3/22/2010 11:29 AM (GMT -7)   
This also happens in other areas of medicine, my daughter is 19yrs old and wants to see an adult cardiologist and we've been told to keep with the pediatric cardiologist as they know more.
My suggestion would be to go back to your pediatric CF doctor...sure would be nice if pediatric and adult care doctors all had the same training...
So sorry you've had to go through all this...
wish this could help, hugz...
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...


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