Pulmonology Visit

[notme]

Not good.

FCV is low. O2 sats are in the 80's. They sent me home with an order for oxygen use at home.

He said he's sticking with the c-pap for now with added oxygen--pending results of AGBs and CT of chest. Will change it to bi-pap if the ABGs suggest I need it.

The walking for 6 minutes test was fun--not. I don't do exercise well. I wasn't surprised my sats dropped to mid 80's.

Saw the sleep study results--they still dropped even with the c-pap--hence, the oxygen addition he requested at night, I suppose. Also noted my heart is doing wonky stuff at night--lots of PAC's and PVC's. Might be time to re-evaluate my cardiac meds.

Got the results from the exam by the ALS neuro, too. I thought I had only UMN stuff going on--she said in her notes that I have both. Also said I had a spastic gait--I didn't realize that. Apparently I have abnormal reflexes everywhere--some absent and other areas where they are very brisk. Strange. Babinski was positive. The ONLY thing she put in her notes is MND -- I'm still hoping the MRI or other tests show some other reason for the junk going on. She did mention other possibilities to me--such as MS and something else I've forgotten now.

Still wondering--do I really want to know? We're treating my breathing issues, my scooter and walker are keeping me from falling--I'm back to not really being sure I want to know what's wrong. Just treat what comes up. MRI to rule out some nasty brain tumor or something makes sense...but not too sure I want to do a crap load of other tests at this point.

I only have to use the portable oxygen with any physical activity and at night--not 24/7.

He wants to see me in two months--or if my symptoms worsen.

Now we wait to see if the insurance will allow the oxygen--cuz I sure can't afford it otherwise. The company said they were delivering both tomorrow--but we'll see.

A major problem I'm noticing, besides the killer headaches--is a lot of confusion and forgetfulness. I feel like I'm losing a lot of my cognitive abilities. Will the O2 help that?

My body is going--i've accepted that--but I can't lose my brain power, too. I have trouble concentrating on a book. I read a post I want to reply to and can't remember the name of the person I'm replying to. I feel disconnected--and no, I don't think it's the meds I'm on--I've been on them for a very long time and am well adjusted to them. I have absolutely no patience. I'm short with everyone and don't even WANT to interact with people. The littlest things set me off. Not being able to use the toaster was the big issue today.

I drove myself to the appt. What a nightmare. I got lost--twice--with a freaking GPS. My leg kept jumping, I was terrified I was going to kill myself or someone else. I just have to give up driving--I'm not safe anymore. Whatever this is--it's affecting everything including my mind.

On a side note--my daughter was playing with my o2 sat monitor...my sats dropped--of course, I've known that. My pulse goes up to 140's with exercise--normal for me. But my daughters pulse? 160 from walking up 15 steps. Her O2 sats were in high 90s. We were horsing around--but her heart rate is going up way too much for minimal exertion for a 'healthy' 28 year old that isn't overweight.

I'm going to browbeat her to going to the doctor.

It's very strange--my sleep study shows I don't reach stage 4 sleep. Wonder if that could have something to do with waking up still exhausted?

 

[Alyoop]

Patty, I am sorry that all the results have been poor. I get what you are saying about, maybe not knowing. It's a personal thing I think. I don't know how the complicated insurance system in USA works, but don't you need a diagnosis to get all the benefits, equipment etc? It also helps knowing so that you can do some planning for family etc.

You should definitely get your daughter checked out. Hope she is ok.

Keep us posted.
Aly

 

[trfogey]

Sorry, notme, I've been busy with other things. The advantage of getting an official ALS diagnosis is accelerated eligibility for Medicare and Social Security Disability Income, if you are eligible . The normal wait for disabled status is usually two years. If you have an ALS diagnosis in hand, the wait is only five months for Medicare and 6 months for SSDI.

 

[notme]

Already on disability due to my other health problems--have been for several years.

 

[trfogey]

Patty,

Ultimately, it's up to you. An official diagnosis brings the resources of the support organizations into play -- MDA and ALSA. It gives you leverage with the insurance companies -- get them to pay for a $6000 BiPAP versus a $1000 CPAP, rather than arguing the DME provisions of your insurance six or eight months from now.

Believe me, every PALS here, every CALS, and a lot of the undiagnosed understand your desire for kicking the can down the road. Maybe you'll be one of the fortunate ones and not have ALS. I hope and pray that you are. But the kicked can may come back and pop you between the eyes at a much more inconvenient time, not just for you, but for your daughter.

Our old friend Joelc, rest his soul, used to say "ALS does not have to be Fatal." This community is a reflection of that statement. It lives because we live. And we live in spite of this monster and spit in its face every day. When one of us moves on, another picks up where the first left off. So, Joelc and BethU and MtPockets and all the others who've gone on still live here. Their wisdom lives in the archives, on a hard disk somewhere in cyberspace. Their spirits live on in each of us knuckleheads that they mentored through the early days.

Joel was right -- ALS is not fatal -- as long as you choose to live with it.

 

[js58]

Patty, so sorry to hear this. I have an idea of part of what you're going through. During my last 6 min. walk, my O2 dropped to 83% and I walk a lot at work. Rheumatologist I saw last Friday said I have to go back to national Jewish (pulmonologists) and see about oxygen. Well I would, but after my insurance paid what they would to NJ, I was left with a bill of $2100. for me, that's a lot. So I called and said I could pay $50 a month and was told "no". They want $120 a month. I know I need to be on oxygen. But I can't afford owing more to National Jewish.
Hang in there. I would think O2 would help that feeling of confusion and disconnection. Take care.

 

[rose]

Patty,

How discouraged you must feel! I agree with what others have already said.

If you continue to pursue a diagnosis, and it turns out to be ALS, it will open doors for you as far as resources, as well as get rid of the uncertainty, which can be a beast in its own right.

About the added oxygen. That is still concerning to me (coupling it with cpap ventilation) generally speaking, headaches are caused by build up of Co2, so, even though your oxygen sats are low, if you're adding oxygen, but are having to fight against the continuous pressure during expiration part of breathing, its not going to address the problem of getting rid of the Co2.

If the pulmonologist caring for you does not regularly see neuromuscular patients, I cannot emphasize enough how helpful it would be to be referred to a pulmonogist who is more familiar with this type of disease. Really.

Do everything possible to get on the optimal regime for your breathing, no matter what other parts of your body are affected by the suspected MND and other conditions you may have, absolutely EVERYTHING will be better or worse, depending on how well your respiratory system is functioning.

 

[notme]

Thanks rose, aly and trfogey. I guess I do need to find out--for some very good reasons. I just am kind of feeling like the windows are narrowing on other possibilities.

The pulmonary doc will change to bi-pap if the blood gases show anything, I'd guess--he's forwarding the results to the neuro for me.

Jp, there absolutely has to be a way for you to get oxygen even if you can't afford it. Has to be. If I find that I have to pay $120 a month for it--I won't be getting it either--I can't afford that kind of money either.

oxygen is like any prescribed med--worse case scenario--look on CL and find one you can buy on your own!

Question: Do I go do the blood gases now or should I wait til I've used the c-pap and oxygen?

 

[CoachMeg]

Patty - I am so sorry to hear the results were not what you had hoped. At least you have a few more answers although also more questions. :sad: I think it is wise to continue seeking an official diagnosis. As has been mentioned, it will open up doors for greater support and assistance.

Love and light
Meg

 

[notme]

I give up. I called the respiratory company The Insurance denied. I don't stop breathing often enough (has to be 15 times an hour) and i don't stay de-sated long enough or some such crap. No way in hell I can pay for them on my own. But at least I know WHY I feel like crap most days.

 

[Alyoop]

The crap USA health system strikes again! So sorry Patty. It's all just stupid. If you need help with respiration you should have it, and it should be free.

 

[momofsixkids60]

Patty, So sorru 4 the health caer snafu's. It tickls me offd whjen thisn happens. Aly's rihgt agaim our hjealthj caern system is all scerewed up. I will b prauing a nbettre soliution is fuond 4 U.

 

[notme]

The company just called me back. Apparently, the RT that did the PFT should have put me on oxygen after the 6 minute walk--and he didn't--which makes it not low enough. They also told me that he shouldn't have had me take a double dose of breathing medicine and treatment before doing the 6 minute walk--

I don't puff 4 times on an inhaler and nebulize each time I walk anywhere--so the test 'conditions' weren't really a 'normal' walking around test with my normal ability.

The double dose (4 puffs) of albuterol let me get enough air to not stay low long enough--he did the albuterol almost first thing--because my sats were low and he wanted a good baseline on the PFT.

Sigh. Well as annoyed as I am-- it's not going to kill me, so guess it really doesn't matter.

 

[Alyoop]

Yes it does matter. You matter, don't give up or I will come over and give you a shove, gentle of course cause I don't want you to fall.......or me to fall on top of you. Seems like a lot of incompetent people about, no wonder you are just plain sick of it.

 

[notme]

Sorry Aly, but it just doesn't. I'm done. What will be will be. This is just ridiculous. There is no way I can afford the machines. The c-pap I could buy given a few weeks to save--the O2--which is what I need the worst--I just can't afford in any way shape or form.

Eventually, my lungs will get worse--so they'll approve it most likely when they do. Hell, even on the c-pap, my O2 sats were 86.

I wouldn't have bothered having the tests if I'd known it wouldn't and couldn't be approved because of them using the double dose of abuterol. The insurance would have covered it all but 20%--oh, and the kicker--apparently this is a new change to medicare. Medical conditions of a previous stroke, heart attack and blood clots and high blood pressure don't matter anymore--they used to. It's called PREVENTION.

When I collapse--and I will--maybe they will give a damn. but, hey, right now, i don't care--so really can't expect them to.