insensative doctors

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anonymous

New member
i was told when my daughter was diagnosed that someone with cf with only live till they r 31.
Well after being on the site its givin me hope that thats not the case.
We were at the hospital yesterday for her month check up .....i said to the doc what iv been readin and he totaly crashed my hopes, saying that its not likley, that these people on the sites arent livin normaly lifes, thay r at home on the net for a reason........cause thay r not well and they r the few who r still livin!
This is the second time he has anoyed me and think that was pritty hard and he should be givin us hope.
Just now my daughter is fine and she always has bein doin well, she never got diagnosed till she was 3 and that was me pushin for an answer bacause she had colds all the time other than that you wouldnt know she had cf.
I dont know what to think now......he has done my nut in!
 
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arabeth

Guest
I would have to say, with no hesitation, find a new dr. Whether it means you drive 2 or 3 hours or whatever it takes, I wouldn't see this dr again for any reason. I hope this isn't a CF Center you're at. I can't imagine that it is. I would be horrified if that were the case. This dr needs some education for sure. Your daughter (and you for that matter) deserves someone who knows about CF and will encourage her to live a very long life. The power of the mind is very strong and if this dr is telling your daughter she won't live to be 32, there's a good chance she won't. I have had some pretty insensitive comments from drs before, but this one I'd probably have had to smack. Is your daughter going to a CF Center for care? I am assuming that this dr is her regular dr, not her CF dr. Just curious. I'm sorry you had your hopes crashed by this ignorant dr, but I can assure you that he is wrong.
 
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EmilysMom

New member
FIND A NEW DOCTOR IMMEDIATELY! This guy sounds like a nut! Or uneducated as far as CF goes. He seems to have it backwards. More and more CF patients are living longer. Don't let his cavalier attitude get you down. This board is FULL of patients that are doing well and living great, full, fun, interesting lives. They are not the EXCEPTIONS! <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/rose.gif" border="0">
 
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anonymous

New member
Hi,

I was shocked to read your post. You doctor seems really insensitive and I strongly urge you to find another doctor with better bed side manners! Especially at a time like this, your doctor should be supportive!

Perhaps you should educate your doctor by showing him/her the following:

I have CF. I am 36 years old and do require daily treatments. I am a mother of a 2 1/2 year old daughter, have a professional career, and manage a household. I DO LEAD A VERY NORMAL ACTIVE LIFE.

I hope that this provides you with some hope.

Dxat35
 
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CollinsMom

New member
Yes find a new Dr. Ihave to drive 1 hour and 15 minutes to get my 3 year old son to his Dr. I am going to take him for a 2nd opinion and that dr office is 2-1/2 hours away. But for his health it is worth it. Yess your daughter may live until 33 or 54. But what matters is today and tomorrow. Love her today spend time with her give her her meds as she needs them and don't worry about the future. B/c all you can control is now. I know if I am taking the best care for my son and I am doing all I can for him than that all any parent can do.
I will tell you like I told another mom. You do the research and take it to them and educate them if you have to or find a different doc.
You may be able to call or go to CFF.org and see were there is another dr near you.
 
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anonymous

New member
This sounds like my doctor. Always pessimistic.
I just blow him off when he says things like that. If you feel that he's not giving 100% towards your child's care, then what others have said is correct--there are other Dr's out there.
 
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anonymous

New member
FIND A NEW DOCTOR. You really don't need negativity in your life like that.

I don't have CF but I am on the internet as much as I can (on this site). I have a full time job plus-feed your doctor that. My husband is also at home, but he is a full time student and took 20 credits last semester, 18 the semester before, 18 the credit before that... He was a full time student at a university in WA, but since we moved on my military orders to San Diego, he decided to finish his last 2 years online instead of having to repeat some classes. Other than that, he is a very active man. He plays soccer during the week with some of our military activities, he walks our dogs at least once a day, he goes to the gym and lifts weights 3 times a week but since he is "off" of school for the summer he is working out every day and on M, W, F he works out twice-he lifts weights. We have an active sex life (not really relevant at this point but may be a curiosity point) and he still does his vest twice a day and his pulmozyme once a day and the tobi twice a day every other month.

I just can't believe that the doctor would tell you something like that!!! With all the advancements in medications, treatments, therapies and such for CF people are living long and productive lives. Especially if you daughter wasn't diagnosed until 3 and she has been fairly healthy, that is a good indication that her CF may remain a very small part of her life and will probably not limit many of her activities. I want to strangle your daughter's daughter. It is medical personnel like this that should have their license revoked for just being idiots.

If you want to talk, feel free to email me at division902@hotmail.com.


Julie (wife to Mark 24 w/CF)
 
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anonymous

New member
That makes me mad that he assumes such a thing. That's awful. He has no idea what we do. I have a full time job working 40- 52 hrs a week until last yearto which I'm still employed I'm just on long term leave. Hoping to go back someday. I do the housework, shoppng, cooking. etc... Now I volunteer at 3 different places and do all the rest except work. I am 35. Don't let him say things like that to you it's not true. She can do anything she sets her mind too. She just needs to take care of herself. Thier are people on a site called cystic-l. Much older 40-74. Yes 74. His name is Hal he's great personality. So don't let a number hold you back. Becky

PS. I drive 1 hour and 15 min to go to the CF dr. She's fabulous.
 
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anonymous

New member
im from scotland and he is a cf doctor......he does look after my daughter well........i just think he could be more sensitive and a bit more positive insted of facts and figures u know what i mean....................
And as i said he has annoyed me before with his comments hes Mr no it all.
Thanx for all your your feed back im gald i found this site
 
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anonymous

New member
Most doctors have that "God complex." They think they know and can control when people will go. I had a doctor like that and it really affected my mental state. I really started believing what she said. So, I got to the point of whats the point of doing my treatments if I'm gonna die anyways. Then she took a medical leave of absence and I got this guy doctor who was in the clinic. He was awesome! He didn't chastize me for not doing my treatments regularly and actually inspired me to take better care of myself. My PFTs are in the 120s and i've managed to not be hospitalized thanks to him. The most important thing a doctor can give is not a medicene, but HOPE! The body itself isn't the only thing that needs to be treated. Talk to your social worker about switching CF drs if there are others in your clinic. My social worker was awesome! Good luck

Dave
 
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Teesh

New member
Hi,

I have lived in many different countries, and seen about 5 specialists around the world, many of them are like this... it is very hard... I am an adult with CF I am 32, I work full time in an office. my sister is 43, she has a more severe case then me, she works full time too, but has IV treatments every 8 weeks for 10 days. We were diagnosed later in life, but the point is these specialists can be out of touch in they way they put you in a box, you have cf so that's how it is...... there is so many manifestations of cf now... but the diagnosis or treatment doesn't seem to go past a lung function breathing test, a tap on your back, and chest, x ray and sputum sample...

When I was 25 and really really well.... back then 1 specialist told me in Sydney I could never have children... so disinterested in actually looking into each case...

All I can say is I am presently pregnant and again have had such negative feedback from the specialist that for my own sanity I will not be seeing him every week to be depressed.. that will stress me out...

Find yourself another Specialist if you can.. but don't expect too much... I am sorry to say you will probably find more compassion and feedback from these forums.

Good luck.
 
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anonymous

New member
Teesh, congratulations on the pregnancy! Have you visited hollycatheryn's website on CF and female fertility? If not, it is a wonderful site and I would recommend you check it out if you are curious about anything. I know you didn't post a question or anything but I thought I would mention it. IF you are interested in the link, let me know and I'll find it.

Julie (wife to Mark 24 w/CF)
 
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thefrogprincess

New member
I agree with what everyone said, just thought I'd add my two cents. I think there is someone on this site who wasn't even diagnosed until she/he was 36! Yeah, that's rare, but CFers are living longer all the time. Your doc is a jerk.
 
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