Appt with Pulmonologist

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Jackfishem

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I have been waiting for weeks to get mom in to see a local pulmonologist. I spoke with his scheduler today and she says, "Can y'all come in tomorrow at 1:30?" Duh, of course we can!

Now I'm freaking out because I have no clue what kind of questions to ask. I gave the scheduler mom's history plus they have her records from her hometown pulmonologist. Mom had a CT scan of her chest in November, so they will also have access to that scan and report.

I suppose with the FTD-ALS diagnosis, I'll need to ask him what signs of deterioration to look for (mom is already short of breath with minimal exertion and she already uses a CPAP at night). I'll ask if there are any medications we need to start or stop. I'll ask if there are any other treatments we need to look into. I'll find out if he has any experience with ALS or with the combination of FTD and ALS.

What am I missing? Please help! Thanks!
 

Nikki J

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Cpap? ALS needs bipap. First and foremost get that changed.
 

gooseberry

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If you pull up the als rating scale you will see a couple areas addressing breathing. Those are things to wat h for...
 

affected

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Firstly you need a pulmonologist that understands ALS as PALS have issues with CO2 retention primarily rather than low O2 (although as CO2 levels rise O2 levels will drop).

Secondly, for this very reason CPap should never be used for PALS only BPap as CPap is a continuous pressure and will force more air in, but it's getting the CO2 out that is the issue.
BPap uses 2 pressure levels to help breathe out as well.

Any testing they do on her breathing should be done laying down as well because PALS have more trouble breathing then. Quite often early breathing problems are only when laying down so if they are not tested this way they can be told they are breathing fine.

Strategies are breath stacking exercises, cough assist machine and BPap.

Medications are normally more around mucous and saliva problems.

Let us know how things go
 

Atsugi

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Bring a pad of paper and a pen. Ask about every number and every big word, until you understand them. Then write it down so you don't forget. I think pulmonology is the most important thing to understand in ALS.
 

Jackfishem

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I appreciate all the insight! I'm sure there will be something I miss tomorrow, but it won't be because of a lack of preparation, thanks to y'all!
 

lgelb

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Agree that top priority is getting the CPAP switched out for a BiPAP. Meanwhile, if the CPAP has any kind of EPR setting, make sure that setting is at the max. If you tell me what model it is, I can tell you how to set it.

If they try the "she needs a[nother?] sleep study" approach to do the swap, just say no. If they know anything about ALS, they would set the BiPAP inspiratory pressure ("IPAP") at least 4 cm above her current CPAP pressure, which would be set as the EPAP. Over time you would adjust both.

Did she have apnea before ALS? Or was the CPAP ordered post-ALS? If you are not sure, ask the pulmo if she has pre-existing sleep apnea. If so, the kind of BiPAP she will need is either an ASV if the apnea she started with is "central" or "mixed," or if it was "obstructive," she will need variable pressure control (where the machine varies the pressure to match her needs but keeps the same breath size throughout), such as with a machine called the S9 VPAP Auto.

If someone [that I would not return to] just fell asleep and ordered her a CPAP for ALS, especially as her condition is worsening, she should start BiPAP with an IPAP of 10 or so, EPAP of 4 and go from there. You will want to re-titrate her at home (adjust ranges and options for how the machine responds to her breathing) to keep her comfortable from here on in. Unfortunately, in ALS, these are not "set and forget" machines. If she needs the machine during the day or will soon, ask for BiPAP with an internal battery (usually a Trilogy or Astral) so she will be able to go out with it.

It is not as critical that the pulmo have FTD experience per se, as it is that s/he knows ALS. Also, this is like shopping, so be aware of how you and your mom are treated; it seldom gets better and often gets worse. Try to determine if the doc and/or an RT will do things like e-mail and chats by phone.

Best,
Laurie
 

Jackfishem

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Thanks again for all the advice!

Mom and I went to the pulmo this afternoon. He is a young whippersnapper and looks like he's fresh out of school. Turns out that his grandmother lives in the same assisted living facility as my mom. He does have some experience with ALS and was very discreet in our discussions. I haven't told mom about the ALS because I don't believe there is any good to come of it. The doctor was careful in his choice of words and said things like "neuromuscular damage" and "motor neuron disease."

Mom had a lot of trouble doing the breathing tests. I'm not sure if it is because she has a hard time following directions due to the FTD or if it's because her lungs are restricted. The doctor thinks it's a combination. In any case, the treatment is the same. He is immediately switching out her CPAP for a BiPAP and said we aren't doing another sleep study before I even asked. He said that the ALS diagnosis gets you a lot of equipment easily and he doesn't think there will be a problem getting that equipment. He said to make sure mom's home health nurse was tracking mom's O2 at every visit and that the problems to keep an eye out for are infections (bronchitis, pneumonia, etc.) or mucus build up. That's pretty much it.

On a related subject, mom had a modified barium swallowing test this morning. Her results couldn't have been more perfect. At least we had some positivity today!

Again, I truly appreciate the input I've gained consulting with all of you. Have a wonderful evening!
 

gooseberry

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I am so glad you found a pulmo with als experience. It will be priceless as time goes on
 

affected

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That's great, and you should feel confident now in further contacts with this guy.

It is great that so far swallow study is good, every victory is to be celebrated!
 

KatieNBoyd

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Hi there, Thank you Jack Fishem for starting this thread. My PALS and I head to the Pulmonologist's tomorrow. Laurie and everyone thank you for spelling things out. I now have a better idea of what I need to ask. We are still having issues with our insurance (I have been writing appeals and letters).
 

BlueandGold

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Praying for good results at your pulmo tomorrow. Let us know how it goes

Vince
 

KatieNBoyd

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Hi there, our visit with the Pulmonologist. Great guy works and Knows ALS well, (we have not met him as he was working in ICU the day of ALS Clinic).

He talked to my PALS about the Sleep study and explained the results and concerns. Particularly the A+H Index my PALS had 3 Apneas and 53 hypopneas = and index of 29.9 per hour his O2 desaturations as low as 69%

He is very aware of our difficulties with our Insurance and is making every effort to hook us up with a Triology machine within the week. He is also very concerned about my PALS continued weight loss (155 in June and 129 today) and the FVC of 63% (his ALS clinic December #) He discussed the PEG procedure as well. and we move on ... Looking forward to our trip in a week to South Carolina to visit his family.
Katie
 

affected

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Katie how did your PALS take these results and the suggested strategies?

I hope they can get the trilogy and peg organised asap for you both!
 

KatieNBoyd

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Tillie, He had a continued stare off into space as the Doctor spoke. He nodded and said Yes or uh huh.

The dr asked if we had a Handicap thing we said no then he asked if we wanted one. My PALS said "no we don't need one I am still walking and talking". As we left he said to me "it is a good thing you don't have to push me around in a wheelchair, that would be terrible" I told him if it made things easier for him it would be a good thing. He became short and upset with the conversation and said "No it wouldn't"
He still wants nothing to do with a PEG. I just continue to hug him and make little things and suggestions to eat. He becomes upset with that as well. Hoping that upon using the Trilogy that he will be able to get some good sleep and feel better in that sense.
Katie
 
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