Need help understanding results?

[JennyC]

My mom had an appointment at the clinic today and I wasn't able to go. My Aunt sent me the page with her stats on it but I don't understand some of the results and mom won't be strong enough to fill me in until tomorrow. So if anyone can interpret I would appreciate it.

The results of her Pulmonary Function Tests
Upright 84% (that doesn't seem good)
MIP 47 (not a clue)

Resting O2 Sat 95 (again, doesn't seem so good)

Resting pulse 109, I'm guessing due to dehydration

but then in the pulse area there is a spot for pulse during walking which obviously she can't do and then there is a spot that says FRS and there is a 17 written next to a /48 thats already typed on the form. So 17/48, I have no clue what that means.

BP 130/88 which is a tad bit high,

Its mainly the FRS and the PFT stuff I don't quite understand

 

[KimT]

If her FVC is 84% that is considered in the normal range (80 - 100) and is very good.

MIP is the strength of her inhalation. If is is a percent, that means her inspiratory muscles (mainly the diaphragm) shows weakness.

Resting O2 Sat doesn't mean much by itself. Mine varies from 96 to 99. It's the CO2 that is of concern in ALS. Did they do an arterial blood gas on her? There should be other numbers on her PFT that, taken together, would paint a better picture of the results. One or two isolated numbers, especially without past comparison, really isn't much to go on.

 

[lgelb]

FRS is the scale used to measure disability in ALS. It's not a test -- it's just a summary of what she can do/not do. It's based on several items so I don't know which ones drove the score. It's mainly used to judge eligibility/progress in clinical trials -- not much to worry about.

The MIP means more than the FVC but less than MEP. If you tell me her age, I can tell you what % 47 cm (if that's the absolute measurement and not a percentile; if it's a measurement, it would have a minus sign in front of it -- does it? if not, it's a percentile) is of where "low normal" would be. 95 for the sats is OK. Does she have any deficit in terms of breathing?

 

[JennyC]

FRS is the scale used to measure disability in ALS. It's not a test -- it's just a summary of what she can do/not do. It's based on several items so I don't know which ones drove the score. It's mainly used to judge eligibility/progress in clinical trials -- not much to worry about.

The MIP means more than the FVC but less than MEP. If you tell me her age, I can tell you what % 47 cm (if that's the absolute measurement and not a percentile; if it's a measurement, it would have a minus sign in front of it -- does it? if not, it's a percentile) is of where "low normal" would be. 95 for the sats is OK. Does she have any deficit in terms of breathing?

She just turned 61. I've noticed that her breathing, while not necessarily labored, is audible now and she has to breathe through her mouth. She can't get enough air to blow her own noise anymore. She drinks very little because she can't really suck through a straw, even with a one way valve. Trying to talk, which she still does even though we really can't understand her, takes a lot of energy and leaves her out of breath.

 

[JennyC]

There was not a negative symbol in front of the 47

 

[soonerwife]

You have been missed Jenny!

 

[JennyC]

You have been missed Jenny!

Awe, thanks. My Uncle died the week before Christmas and then one of my Aunts and I got into a huge fight and she brought her daughter into it who told me I was a horrible, selfish daughter. Basically they were heaping all work that they didn't want to do or have time for on me, despite that I live nearly an hour away, have so many health conditions that I am unable to work and I can no longer lift my mom. I set. Boundaries, they had a hissy fit. I broke down and checked myself into a lovely,privately owned psychiatric hospital for a week. It was such a good week, I want to go back!

They adjusted my depression meds, during the day we had classes on DBT skills which is a type of therapy, we learned about aroma therapy and we meditated at night.....they had a massage chair that I made my biatch while I was there too lol.

 

[soonerwife]

Sounds like a great place to regroup. I hope things get better soon.

 

[scaredwifetx]

I am so glad to see you post Jenny. I have thought of you often. I sure hope things get better for you. Your strength is amazing.

 

[JimInVA]

As has already been said, you were missed. Sorry for the challenges that are placed in front of you... but glad that you continue to move forward, regardless. You are NOT alone!

My best!

Jim

 

[Erika]

Sorry you had to go through that family drama. I don't know much about results reading, so can't help you there, but I am glad to "see" you're OK after some me-time. Big hug to you and your mom.
-Erika

 

[IbisPibis]

She drinks very little because she can't really suck through a straw, even with a one way valve.

While this doesn't answer your original post.... it sounds like our moms are in similar condition. Luckily my mom has a peg tube to keep her hydrated. But sometimes when she wants to drink by mouth I give her odwalla smoothies slowly with a syringe. Maybe that would help your mom stay hydrated?

 

[JennyC]

That's a good idea with the syringe and Odwalla. Mom doesn't want any type of artificial anything, so no tubes, no trach, nothing. I think we are at the beginning of the end.

 

[lgelb]

Jenny, if that "47" means cm/Hg, then her MIP is still 1.47x the "lower limit of normal" for her age.

Coupled with her FVC, that suggests that she can breathe quickly better than she can breathe deeply, which in turn suggests she might benefit from some focused breathing (not to fatigue)--meditation-type breathing that does not trigger coughing.

Unfortunately, many clinics are not yet doing the "nasal sniff" test (SNIP) that in a lot of people, including your mom, makes more sense to show how the breathing is compromised. To test the idea that her nose could be clearer, apart from muscle weakness, you might consider a drop of saline spray or a nasal steroid (not a decongestant spray), or even more humidification near her. Dehydration certainly doesn't help so go for the smoothies, soups that you control the thickness of, pudding, applesauce, etc.

She would probably benefit from BiPAP but her clinic probably won't write it nor her plan reimburse it at this stage. If you get adventurous, her internist might, and you could get a relatively inexpensive ($399 is what I'm seeing) gently used machine. But from what you say, she's not interested, so this is more a note for others.

Thanks for hanging in with her given all your issues.

Best,
Laurie

 

[Narrowminded]

Jenny - I'm so happy to see you, but so sorry to hear of the drama surrounding you. I am thrilled that you were wise enough to get yourself some help when you needed it. That's huge.

We do miss you around here.

Hugs,

Sue