New pvc

[chally]

Just back from va and pulmonary test which dropped from
82 down to 60 I knew something had changed!
I got a new pulinologist dr and really don't like him as the first
thing he says is unless PVC is @ 50 then you don't need trilogy.
I got up and walked( pwc) out . He later puts on report and the nurse showed me " ALS ??? Questionable"
If my hands worked I'd punch his light out and send him back to the foriegn country him came from. Either that or hug him and say I love you for telling me I don't have this f**king nightmare. I hate dr that condensed and think they know it all.
He's lucky to have a job here and thinks blowing smoke up a vets a$$ is gonna earn him some va brownie points.
Thanks for letting me vent here, and besides this bad dr I still got to face the news up lower PVC and now do I start thinking about feeding tube as I have read here on the forum?
Anyways I love ya all. Chally

 

[gooseberry]

Chally, Donald higgins is in charge of the als program for vets. If you are having issues, I would touch base with him. Donald dot higgins @ va dot gov

 

[ShiftKicker]

I have nothing to add except my outrage. It says a whole bunch about that guy's professionalism to question a pretty clear diagnosis. I sincerely hope you gain some satisfaction in making a complaint to whatever governing body is in charge of employing such a terrible person. Boo. BOO!

Sorry you have to deal with that on top of your disease.

 

[faithandlove]

I've always shown the up most respect for doctors, but sometimes you get one or more that are complete a$$es. I know what you mean, Chally, about wanting to punch their lights out. Just like any profession, you have your good one and not so good ones.

My PVC was in the low 70's, and they put me on a trilogy. Because I use it every night, I don't feel a need to sleep as much during the day.

Also, I am get the peg before I get worse because I read if you wait too long, they may be able to do it. My neurologist is scheduling one for me even though I may not use. I'm just getting it in case I change my mind. I really don't want to prolong this shi&&y disease, but who knows how I will feel later on.

Hugs to you Chally,
Deb

 

[gooseberry]

Not the threshhold va uses. I would ask uour neuro

 

[affected]

I so want to punch him in the throat for you Chally!!!

 

[Atsugi]

You are allowed to use non-VA doctors and charge Medicare. It's best to ensure both doctors are kept informed.

Also, you can request a different doctor. You just request the team leader to change your assignment to a different doctor on the team. Very easy.

 

[ehd42]

Hi chally

You have every reason to be angry when you go to a physician to whom you entrust your life and welfare and he or she does not listen to you or assist you to the best of their ability. The ability for a physician to relate well with understanding to patients, to be compassionate, to be committed and supportive is not a requirement for graduating from medical school or completing a residency program, even though it should be.
Fortunately, you can usually find a better physician because they are out there. I think it's worth considering that a pulmonologist has no expertise in diagnosing ALS, and so I wouldn't get bent out of shape regarding his actions even though I feel your frustration. A decline of a FVC by 20% is significant, however, the accuracy of pulmonary function values depend on the calibration of the equipment and the expertise of the pulmonary function technician in getting the best study possible out of you.
In this situation I think it best to be your own advocate and ask your ALS center’s neurologist to have the pulmonary function technician repeat your spirometry in a month or so and to help assist you to you in qualifying for a trilogy. By the way, I was on BiPAP until my FVC fell below 50%, when I switch to a trilogy in order to get true mouthpiece ventilation.
I have found that I have been able to find allies among the Center’s physicians and staff, perhaps because I am a persistent self-advocate and I lucked with my center. If I weren’t happy with things, I would just find another center, no matter the effort required because I need a good partner in dealing with this illness.
I wouldn't worry about a feeding tube with a FVC of 60% unless your losing weight or have bulbar symptoms. Nevertheless, you should learn about it and discuss it with your center's neurologist so that you will be prepared to make that decision in a timely manner.

Best wishes

Eliot

 

[Nuts]

Oh Chally, I'm sooooo angry!!!

Demand a different pulmonologist or go downtown. Period. The guy knows nothing about ALS, clearly.

I would, however, demand that he explain why he questions ALS. He's not a neurologist. It's not his diagnosis. He's just making trouble and he needs to be straightened out right now.
Seriously, contact Donald Higgens unless you have a good contact at your hospital who you know will handle this guy. Make them get that little seed of doubt out of your records unless he can make your day by giving you a different diagnosis.

Becky

 

[gooseberry]

Becky is right. You need to get it straight so your benefits arent affected long term.

 

[chally]

Thanks family,
Regarding feeding tube, I am not losing wt. do not have bulbar
issues, swallow & speak good now. Know I do have to consider this now and down the line.
My situation is that I am not in any clinic any more , I dropped UVA clinic when they started billing me instead of va because of a 5 day difference in the choice first illigabiliy. Plus didn't get much out of clinic there except dx.
No clinic @ my va as I am on hospice. And although dr bedlack
second opinioned my dx and invited me to his clinic I declined as it's to far and like I said I am done with clinic.
The pulinary tech was very good did lots of test and even duplicated some and even gave me a breathing treatment then test again to see if anything had changed.
This dr is new to Beckly va and I can tell the staff are not to happy with him. So am not to worried about him but don't like him and if things don't change in his attitude then I act accordingly thru va channels. The old me would knock his running lights out in a heart beat but hey I am not that guy any more
so not gonna sweat the small stuff and it's all small stuff now.
I am already on the trilogy all night and some in the day so whatever he think don't mean $hit to me!
I treat all va personal with the highest respect as most of them that I use are vet also. We never talk trash about va and stop anyone we hear doing it. Only when in rare cases when someone acts condensending do I get this pissed off.
This to shall pass! A good attitude is my meds and keeps me on the plateau, getting worked up only cuts my own throat.
So thanks again ya all for listening and I love ya all chally

 

[gooseberry]

In suggesting Don Higgins, I wanted to give you a way to provide good feedback. When I spoke with him, he was surprised at the differences in care for vets with als, between regions. He was to be putting a group together to address this. I have not heard from him lately but he was quite interested in establishing centers of excellence for als care.

 

[Nuts]

CHally, this process changes us all, doesn't it? I'm glad that you were able to vent and are ok. We also love the VA and don't trash talk in general. Sometimes an individual brings it out in us, but not often.

So, keep running that Trilogy my friend. If you ever want to make a trip to Duke you know you have a place to stay! Every three months would be too much, but even one round might be worth a trip to lovely Lake Gaston

You inspire me, my friend.
Becky

 

[chally]

Ha ha ha even though I missed typed PVC for FVC you all knew what I was talking about, what a hoot!
Thanks gooseberry I will get in touch with this guy espically for future quality for the next vets. Love ya all chally

 

[KimT]

Chally, Just letting you know I get it. This disease is bad enough without doctors acting inappropriately.
Keep on living life, my friend. You inspire me.