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CarolSue

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120
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PALS
Diagnosis
01/2016
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US
State
Kansas
City
Middle America
I went for my clinic visit a couple weeks ago and the neurologist suggested hospice. I've lost 18 lbs in 3 months. I knew I lost some weight but not that much. My FVC was 39, down from 41 three months ago. Both my husband question the accuracy of this reading as we've both noticed a breathing decline since last visit. We've always had the same respiratory guy until this visit so different person and different machine...I guess the point I'm trying to make is that I suspect my fvc is lower. They also did a test where you try to draw air in thru a little contraption that I couldn't seem to budge and that reading was 19. They didn't tell me the name of that test. Can someone tell me the name of the test and how is it different from FVC?

Second question is about the drug Dilaudid or Hydromorphone. I tried Morphine twice (liquid under the tongue) and both times it caused so much stomach pain I would have suspected a gallbladder attack if I still had my gallbladder. It hurt all the way through to my back and also seemed to radiate. Both times it lasted about 45 mins to an hour before going away. They have stopped the morphine and switched me to dilaudid. Will the dilaudid be as effective as morphine?

I know I will have a lot more questions but this will do for now. :wink:

CarolSue
 

tripete

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Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
CarolSue,

I cannot help you with the drug but the other breathing test is the MIP/MEP. My understanding is that it measures essentially the strength of the diaphragm. I have also had a special x-ray done two years ago when I was looking into a device called a diaphragm pacer (it is an electronic device that stimulates the diaphragm much like a heart pace maker) but it was found that my diaphragm was to far gone to be of any use. I am certain that the test numbers are almost always wrong. The best you can go by is how you feel and then adjust things in your surroundings the best you can.

My Hospice group offers a misuse so I get a message once a week as part of my treatment it has helped with my shoulders and lower back pain. She does the massage while I sit in the pwc and knows not to do deep tissue. It is a great service if it is offered.

One other thing, I am going on two years now with numbers at or lower than yours. I use my Trilogy BiPap about 20 hours a day and still manage to go out to breakfast with my wife and do other small things. I paint, write some, and just try to encourage my family. All of it is difficult because I can barely eat, talk, or use my hands, but I keep pushing. Decide what is important to you than throw all you have into it.

-Peter
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
Carol sue, my experience with morphine was it slow bowels and made it hard to poo.

I now use mmj oil and it helps calm me down,increase appetite, mood changer.

Like others have said about the # I don’t go by them but by how I feel.
Good luck
Chally
 

lgelb

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CarolSue, Pete and Chally are right -- don't worry about numbers and don't feel that you need to be on opiates if you're not experiencing air hunger, which you didn't mention (and if you are, I'd adjust BiPAP first before considering drugs). But many people here, including my husband, have lived for years with numbers lower than yours.

Calling in hospice is entirely at your discretion as well, not your neuro's. You and your husband can interview them and see what you think about whether they would be helpful at this stage, but it's your call.

The MIP/MEP (maximum inspiratory/expiratory pressure) can be as good or better an indicator of where breathing stands as compared with FVC/SVC, but everything should be considered together and even then are not really predictive of anything. How you feel, your nutrition and what you do besides ALS, if you will, are far more suggestive of where you go from here.

Best,
Laurie
 
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KW1234

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Joined
Sep 28, 2016
Messages
269
Reason
PALS
Diagnosis
10/2016
Country
US
State
OR
City
Hillsboro
Carol Sue, I am starting hospice today. When I saw the pulmonologist last week they didn't bother to measure fvc, I was in full air hunger mode and it was obvious my ability to breathe had clearly declined. My progression has been very fast. They made several changes to my AVAP and prescribed a giant bottle of morphine. The morphine helped the air hungerr but suppressed any ability to cough up mucus with thr cough assist so I use it sparingly. Anxious to hear more about hospice services when they come today.
 

KimT

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Joined
Nov 18, 2014
Messages
3,683
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I've not had trouble breathing but I had horrible pain and still have it off and on. I put a 1/4 tablet of Oxycodone (a close cousin to morphine) under my tongue. The first several times it made me itch, which is a common reaction, then it took hold and broke the pain cycle. I do think that medical cannabis is great for pain, appetite, and sleep but it won't help breathing except you will be more relaxed. Adjusting your BiPap might be the best thing you can do. Gentle massage will also help you relax and you should try that.

My FVC has been all over the place for three years. I got so frustrated I bought my own equipment after selling my condo so now I can test FVC, MVV, SNIP, and MIP/MEP. Numbers are just numbers and I'm not convinced of FVC numbers that come out of clinics. My FVC is better lying flat than sitting up and I think that's because I have belly weight or maybe some other anatomy issue. So forget the numbers and just focus on how you feel and what you can do each day.

Warm thoughts coming your way.
 

Herdaughter

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Joined
Sep 15, 2017
Messages
50
Reason
Loved one DX
Diagnosis
08/2017
Country
US
State
Oregon
City
Portland
Carol Sue,
Oh the numbers. I swear after hearing them my mom (pals) gets even worse before her fighting spirit kicks back in and then she seems to rebound. I can’t explain it. She went from an overall functional rating of 43 in September to a 28 this month and I thought for sure this would be her last Christmas. Her greatest weakness is in her respiratory function. She quit smoking over 10 years ago but the damage had already been done. With that info - The device that has helped my mom the most is an inhaler that specifically targets the damage done by her years of smoking. She has a wonderful pulmonologist at the clinic in addition to the respiratory therapist and this has helped a lot. We saw him for the first time in two weeks and he helped a lot. Probably more than anyone else as far as moms comfort is concerned.

I don’t know if any of this is applicable to your situation but I thought I’d share it just in case you find it helpful. We’ve found that sometimes the als treatment team forgets there are other medical issues aside from als that get worse as als progresses. And sometimes treating those symptoms goes a long way in providing comfort for my mom.

Sending you a lot of love.
 

Herdaughter

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Joined
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Messages
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Reason
Loved one DX
Diagnosis
08/2017
Country
US
State
Oregon
City
Portland
I forgot to add that my mom is doing so much better with the new inhaler and we are no longer thinking in terms of last anything’s.

Sending you lots of love and heaps of hope.
 

CarolSue

Distinguished member
Joined
Dec 16, 2015
Messages
120
Reason
PALS
Diagnosis
01/2016
Country
US
State
Kansas
City
Middle America
Thank you all for your comments.

CarolSue
 
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