Pulmonary Doctor

[handinhand]

Can anyone tell me what to expect from a first visit with a pulmonary Doctor?

 

[GlenBrittle]

You will be performing a number of breathing tests while being monitored. Lung capacity, in and out strength , cough force etc. The first time will be the baseline for future visits.

No , you will not be wired up like frankenstein. Its all pretty easy.

Your results are right in front of you , so you should not have to wait from the stats. ie: no followup appointment.

Glen

 

[handinhand]

Thanks Glen... For the information.... How are you feeling ? Hope you are still doing real good? Linda

 

[GlenBrittle]

I am still feeling with my hands. And getting in trouble for "improper" feeling.

I am doing very well.

Glen

 

[BethU]

With my pulmo doctor, he just usually thumps me around a bit, listens in and watches me try to breath. Every so often I get a chest X-ray.

He schedules breathing tests separately with a technician. They are simple but annoying, and as are Glen describes. They put a plastic mouthpiece in your mouth and you huff and puff away. I have learned to ask for a print-out of the results. As Glen says, they have the results instantly. Usually mine does three attempts at each test, and they keep the best result.

 

[Senegal]

handinhand and moderators please bear with me.

I cannot think through how to start my own question.
I've just had my 4th breathing test and I'm trying not to panic...results have been 79/77/61/ and as of yesterday 51%. I started using a BI-PAP at night in July.

I'm really concerned about what seems like a rapid decline in my percentages. Neither my neurologists or the pulmonary NP has expressed "concern". I'd appreciate feedback from those with ALS

Thank you.

 

[GlenBrittle]

Don't freak out ! Its a waste of energy.

I dropped from 97% to 81% to 57% to 59%. Each at three month intervals.

I was on CPAP until I hit 57% , then switched over to BiPAP. As you can see , it was a good change.

Did they give you one of those , whats the real name for it, bags that push air into you. This is for breath stacking - expanding your lungs. Makes for a good exercise of the lungs.

ALS is going to go as fast or as slow as it wants, and does not tell you which one.

Glen

 

[BarryG]

My breathing test results have been decreasing also but are still about 87. The biggest problem I have with the tests which are done every three month before my clinic visit is getting any kind of lip seal. I hold my lips closed around the mouthpiece with my fingers but there is still a huge amount of leakage. So how much is decreased pulmonary capacity and how much is decreased lip ability? Nobody talks about this.

 

[kelly]

Barry...I agree about the lip seal. It is such an important test...and so nerve wracking when the number is not accurate due to lip seal. Let's invent something to help with the seal. I know we have some very creative folks on this site.

 

[Senegal]

Thank you for the feedback on dropping breath test numbers. I starting using BiPap in July with the drop to 61%. The further drop to 51% caused my concern. My lip seal seems good on two different types of devices. I do have the cough assist machine (for exercise). I need to use it more. It's recommended 3-4x per day...sometimes I only do 2x. I have more incentive now.

Hope everyone has the best day possible.

 

[coolhandluke]

Hi my name is Michael, I think that all of you, especially the ones fighting ALS are remarkably strong people i am in awe of you... my father has als for past two years and is stable we have a great relationship... Im 25 m, and think ive been having symptoms of Pals, I have a little bit of excess saliva, when i read sentences aloud i have to stop after every other sentence and there is a pretty loud audible gasp for air... when I jog outside I spit aLoT of saliva up, and dont have alot of stamina like i used to a few months back.. also during the babinski s test my mom administered shes a PA my big toe did not go up kinda goes down but my other toes twitch a little bit some times up, sometimes to the side, Ive been under alot of stress lately and sometimes my toes on my left foot will start twitching and my legs as well, also my let rib cage sticks out more than my right, and my right stomachmuscles when flexed are strong and tight and my left side of stomach not as firm, I have a history of head trauma, bad falls, injuring of the back, because of sports and drunken foolish escapades.... so am pretty worried,, I see people like AL respond all of the time, you are the man by the way i pray for you and cindy, carol and everyoneone ALOT, i feel silly posting this almost selfish but would appreciate any feedback, thank all of you so much from bottom of my heart, hope to hear back, ty alot

 

[rose]

RE: the lip seal, Last clinic visit, when I couldn't get a good grip on the tube, the RT substituted a full face mask, (like for bipap or oxygen) so the seal was complete. Unfortunately it didn't bring my score up, but then again, at that point I'd already huffed and puffed how many times? I don't enjoy that test.

Coolhandluke, maybe you should talk to your gp about this, a lot of it could be stress related. There are tests that can show if your dad has a familial type of ALS, but I don't know much about how testing is done. Good luck to you and your family.

 

[BarryG]

Rose, I know what you mean about not enjoying the pulmonary tests and am always really tired after them. And they are always at the start of my clinic (which makes sense) but I am bagged afterward so my energy for the rest of the visit is lower than I would like. They have never offered me the face mask but that does sound like a good idea rather than the nose clip and me holding my leaky lips with my fingers.

 

[hopingforcure]

I have the same problem with the seal. I am going to try the mask idea Rose, that sounds much more helpful. Barry I agree that is a big thing for the beginning part of the visit. I have mine scheduled earlier for my next appt. I can get it a couple days before my visit for that reason. I will let you know how it work's out when I go in January. Although I remember most of you are not as close as I am to my doc. only 15 minutes. But he even said I could use the prescription at another location and have it faxed to him.

 

[handinhand]

Deborah, I had a ox test in Feb. I was at 82 . It was 52 two weeks ago. I was also very worried. My Nero didn't seemed very concerned either. He did make me an app with the Pulmonary Dr. Did some other tests and now the ox is 48... They have ordered a Bipap for me . I hope it comes soon. I think it is very scary to see that happening. Seems very fast to me.... Linda