Pulmonary doctors---What should I expect?

Dana · #1 10-01-2008, 10:35 PM

My name is Dana I'm new here. I have a four year old Laneah on a vent with unknown MD.

We have a pulmonary doctor who we see every three months. If we get sick or I call with any worries they tell me to take her to the ER.

THey meaning the nurses. I never get to talk to our doctor---he relays the messages. I can only see him other than the normal clinic visit if we have been admitted and then discharged from the hospital. I am told they tell him when we are admitted. He never calls, comes by, or even has a voice in what happens to us once we are inpatient unless he happens to be on (only happened once or twice).

We have changed doctors within this department but I'm told this is how Pulmonary does things and that this is what I should expect.

I am not expecting a phone diagnosis. I am not expecting him to risk his license. I am just wanting to talk to him. THis is her most important doctor. I would also understand if I had less access to him in the winter, but it's year round.

What kind of service to you have from your PULM. doctors? Is this normal? Should I fight the department? HELP?

Ann · #2 10-01-2008, 10:49 PM

Dana- I experienced the same thing with the first pulmonary group we had when we moved to Phoenix. I'd call when Jack was sick and they wouldn't even try to fit him in -- even when I told them it didn't have to be that day, if they'd just see him that week. Like you, they just told me to go to the ER. I can tell you that I DO NOT do ERs.

I asked my pediatrician if he knew of another pulmonologist and he gave me the name of pulmonologist who used to be with the same group, but went out on his own. He is very good and always fits Jack into his schedule. The only bad part is that more people have found their way to him, so it's not as easy to get in as it used to be, but I've never been told to take Jack to the ER.

I think it's time to find a new pulmonologist. Sometimes we have to look beyond the "best" institution or the "best" group to truly find a physician who is the "best" for us. Those of us who have chronic kids need a physician who cares more than we need one who is the "best" (not that one necessarily excludes the other). The other option is to get your pediatrician more involved in Leneah's care. Jack's pediatrician can (and will) handle most of Jack's respiratory issues.

You and Laneah both deserve better and have every right to expect your pulmonologist to see your child when she is sick and to talk with you on the telephone.

drct1245 · #3 10-01-2008, 11:32 PM

Our pulm experience is completely opposite of what you have described. Especially b/c Ayden too was on a vent and they let us call the pulm directly. She has her own practice and has a PA that we talk to as well. They are always willing to talk to us and tell us if they would like to see us or if we should wait.

They fit us in when ever, if necessary, and we usually spend at least an hour there every routine visit.

hope that helps....

kshell · #4 10-02-2008, 10:36 AM

Natalie is also on a vent. The pulmonologist we go to is also in charge of the technology dependence center. We call and talk to NP's weekly with updates, weights, all the normal stuff. We have seen the dr. every two months since coming home. The pulm nurse practitioners have prescribed antibiotics over the phone already. I would say it may be time to look else where, even if the doc is associated with another hospital. So sorry you are having such a hard time, its not right!

Good Luck,
Karen

lil' G's mom · #5 10-02-2008, 11:57 PM

We pretty much have the same experience as Ann, Dawn and Karen, I can call anytime, May not take directly to the doctor, but I have NP's direct number and she always talks to me, no matter how lame the question, and then will call back the same day after talking with doctor with the answer solution or whatever it was about..... the two times I felt he should be seen they squeezed us in within the hour, don't always expect that.... and the Doctor always calls me directly with lab results, ect., and and makes sure he has enough time set away, in case I have any
questions at that time...... I would start looking around like the others have said for someone that more fits your needs..... good luck.

Vicki Rocha · #6 10-03-2008, 04:15 AM

I have always been able to talk to my pulmonologist, he's actually my favorite of all my son's Drs. I usually leave a message with the nurses and the Dr. calls me back as soon as he can, which is always soon after. You should be able to call with questions and concerns and talk to your Dr. since he is a very important part of your child's care. Maybe you should look into another pulmonologist if your not totally comfortable with the one you have now

Dana · #7 10-04-2008, 12:52 AM

Your messages really helped. My Ped. feels she can only handle normal illnesses and cannot do x-rays in her office. She will do anything within her power for me. She will call me back about in a matter of hours.

I am feeling like I need to look elsewhere. I have a reccomendation of another doctor. I'm going to try this next.

Glad to know I can expect better. Do you all depend on your Pulm. doctors often? Are you all so good at handling all this you know what your doing? I know I need them way to often.

Thanks again.