pulmonologists

[cindi o'h]

Every once in awhile I read someone's post regarding how much they like their pulmonologist.

Mine saved my butt once when I was in a bad state of radiation pneumonitis.

Other than that, there is nothing too impressive to report.

I have asthma along with allergies. My allergist was amazingly thorough and I think extraordinarily good. However, now that I have lung cancer, he wants me to be with a pulmonologist.

Mine has me run back and do the LFT and every now and then sends me down for another chest Xray. But, if I want to know what the chest Xray says, then I am supposed to make another app't with him to review it with me. He always runs behind. I am not exaggerating when I say that I need to wait from 1-31/2 hours. Then he shakes my hand and says that things are fine and he can't believe how well I am doing and see you next time.

I see where some people get some therapeutic breathing exercises or something from their docs....?

He refills my steroid inhaler and that's about it.

What is a "good" pulmonologist? What do they do? What does one look like?

Help me out here, gang.

The reason I am asking is because my "affected" lung doesn't seem to be inflating very well and I want to know what the scoop is. I have what seems to be either a cold or the end of Fall allergy season.

Any ideas are welcome.

Thanks.

Cindi o'h

[luvmydog2]

Hey Cindi. Your Pulm doctor sounds like mine except I don't get any refills from him. I am courious to see how the rest of the board feels about this. I see no sense in going to my Pulm doctor just to have him tell me this except maybe a check up once a year. But there again, there is no disease in my only lung. For those of you that have not had any surgery on the lungs, you might need to see a Pulm doctor often.

[SDianneB]

Man, oh man. Where do I start. The Pulmonologist I go to literally saved my skin when I was first diagnosed. My PCP was out of town (Memorial Day holiday) and the ER doc hooked me up with this Pulmonologist who knew that something other than "just pneumonia" was going on given my low sodium, lack of symptoms, no fever, etc.

All through this, he has been spectacular. If I'm ever confused about something, I just call him. I can talk to his nurse just as well as I can talk to him, and she intervenes for me if needed. When the oncologist was going to withhold chest radiation because he thought I was a goner, I told the Pulmonologist my concerns, so he just gave the guy a call and told him we'd like to have the radiation, and to be treated as if I was limited stage. Of course, I was limited stage, had been from the start, but the oncologist (Dr. Gloom & Doom) thought that he somehow had a higher vision than any other doctor, or what showed on the tests, because he was putting cancer where there was none.

With this latest go-round of equivocation and run around that I'm accustomed to from these oncologists, the Pulmonologist again makes sense of it all, and actually tells me what he thinks is going on. He doesn't sit around wringing his hands and ordering scan after scan, waiting for something to pop out and smack him in the face. He actually looks at the films and doesn't just rely on a written report. I didn't realize how significant that was until I found out that the oncologists weren't ever looking at them.

I know that if I ever have a problem, he's there, and will always come to the rescue if needed. The best thing so far has been his willingness to just pick up the phone to another doc and tell them what he thinks. He doesn't just sit there and try to defend/justify what is clearly wrong. He'll either get it clarified from the other doc, or he'll say what he'd like to have done, and if that doesn't work, we'll go somewhere else.

He told me right off that he would make me feel much better while I was in the hospital, and he did. He told me he wants to be seeing me for a LONG time, and believes we can work for a cure. He looks me in the eye and tells me exactly what's happening -- good or bad. Of the 3 specialists I've seen this all started, he and the Rad. Oncologist are the only 2 who have even mentioned anything long term -- rather telling about the Oncologists, I'd say. This Pulmonologist talks to me with reference to the future. When we talked about PCI, he wanted me to make sure that I knew what the potential side effects might be 10-20 years down the line. THUD. 20 years? Yes, he said, 20 years. He says he doesn't do what he does to lose patients, so he assumes we'll all be around for a long, long time.

And besides all that, he's a nice guy.

Di

[cindi o'h]

yeah! Di! You're the one! Does he travel?

Cindi o'h

[Amy P]

My Mom's pulmonologist is the one who insisted she have the ct and pet scans back in March and actually found that her cancer was back, suprising to us because she had just seen her oncologist 6 wks prior and there was nothing on the chest x-ray. He is a good guy and I trust him but I had a really bad experience with another one in the same office, so I think it is really a matter of whether you get one who wants to understand what is going on vs. treating current symptoms etc. I have gotten the best care ever from an immunologist who calls me every week that I don't see him to see how my breathing is - I guess it is in the luck of the draw.

If you change, I hope you find a good one!

Much Love,

Amy

[SDianneB]

Cindi, I think it's WAY too cold up there for us southerners!

He should be cloned so that everyone can have a doc like him, IMO. I realize we all have different experiences, but I think my initial mistake was that I didn't ask enough questions of the oncologists, and failed to find out their knowledge/expertise with lung cancer. Since then, I think this practice is more geared toward breast cancer and research, and even though they have lung cancer patients, I'm not convinced they are as up-to-date with LC as they are breast cancer.

I suspect that when I see the lung cancer specialist (Oncologist) on the 30th, what he will have to say will more closely align with the Pulmonologist than the other Oncologists. We'll see.

Di

[close to the edge]

my pulmo is also a critical care specialist

he is very personable and does all his patient interview himself

all his notes on my chart are from his hand writing

he is very thero

i also see him every three months

for the same thing your ok do you need refills see you in 3

i keep these appointments over my GP & onc because he knows lungs

thats his specialty

my onc treats mostly brest cancer she treats all cancers but not a whole lot of lung cancer

so knowing i have a lung specialist on board for second oppinions is nice to know

[Don Wood]

Well, Lucie has one and he is terrific. He saved her life twice during the two years battling lung cancer. Two months after diagnosis and at the beginning of her treatment, her port got infected with staph and went systemic. He got her through that and was the primary doctor. August a year ago, she came down with bilateral pneumonia, and he was again johnny-on-the-spot, and took her through that. The last time we saw him, which was last month, he couldn't get over how great Lucie looked and acted, knowing she has lung cancer. He's a jewel. He takes care of the non-cancer problems, such as lung congestion. We also have a regular doctor who is on the team and takes care of normal everyday problems, such as allergies, colds, etc. And he gives Lucie plenty of TLC. Don

[Debi]

Cindi,

My Pulmonologist was great, but I had to get through a real bad one before I found him. I say, shop around until you are happy. I am sorry, and at the risk of sounding cocky, no one makes me wait up to 3 1/2 hours for an appointment. I can see some sort of emergency and it happening once, but no way on a regular basis..I have changed doctors for making me wait consistently. And then he sucks besides???

My Pulmonologist was about 4 feet tall and very dour looking. He had absolutely no sense of humor whatsoever and when I made a joke he would look at me all puzzled. But he took his time with me and explained things and I KNEW he was good. I haven't seen my Pulmonologist since my post-op, but that is only because he is 4 hours away. If he was closer, I would be going to him for my 3 month checkups.. he had told me that he would check each scan against the previous personally. Instead, I go to my Onc from hell who gets the results faxed to him and I don't even think the hospital radiologist compares it with the last one.

Anyway, good luck in your search.....

[Kaffie]

My Pulmonologist is supposed to be among the best in Portland. he is a very nice man but totally missed my dx. He was positive for 2 months, right up until I went into the operating room that the spot on my lung was not cancer. He almost had me believing it wasn't but I was too afraid of the shock of cancer to let myself fully believe I had a benign mass considering I was a 30 year smoker. So, all in all, I really don't know where he would fit into the picture for my future care.

Kathy

[chloesmom]

I've never had a pulmonologist???????? My chest surgeon does the chest x-ray and follow-up visits, and my onc does the blood work and follow-up visits. So far, so good. I am not anxious to add another "ologist" to an already too long, too puzzling list.

Cindy