Re: Severe Pulmonary Hypertension

[Guest guest]

Hi

I know this subject has appeared quite often - yet now that it applies to my mother :-p am wondering if there is any treatment modality to keep it from getting worse. Just received the echo back today - her fibrosis hasn't worsened too much in the past year, but feel she is not getting enough oxygen - we keep it on 2L yet when she walks, it all changes..

My father believes to keep it at 2 when walking - he is difficult - I know her sats drop to about 84 when walking with the pulse oxymeter - she is uncomfortable using a continuous flow portable

Any feedback would be much appreciated..

for Dee IPF 10/06 Mpls.

Kim/Caro

KIM... Hey I like that 'retail therapy' : )

Works for me! Tell me about your pain patches, what brand are you on? I may need to go on the patch if I continue to have allergies/side-effects to my pain meds. We took our little Doxie (Lola) to the Vet yesterday. Wow! $165 for a blood test, meds and visit. She has a severe gastro/upset but the meds are already helping. My granddaughter gave her ice cream and that may be the culprit. I give her a lick off the end of my spoon but she gave her the whole bottom of her cone....out with grandpa.

CARO... you were tired and only walked a mile?! Good for you girl! Glad the heart is ok and sorry about the Sjogren's. I don't know much about it and will look it up online.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

[Guest guest]

Hi

Many of us have different O2 requirements at rest to what we need on exersion. Mine is currently 1L at rest and anything up to 6L on exersion. Your mother should have a 6 min walking test which will assertain what she needs when walking.>> Hi > > I know this subject has appeared quite often - yet now that it applies to my mother :-p am wondering if there is any treatment modality to keep it from getting worse. Just received the echo back today - her fibrosis hasn't worsened too much in the past year, but feel she is not getting enough oxygen - we keep it on 2L yet when she walks, it all changes.. > > My father believes to keep it at 2 when walking - he is difficult - I know her sats drop to about 84 when walking with the pulse oxymeter - she is uncomfortable using a continuous flow portable > > Any feedback would be much appreciated.. > > for Dee IPF 10/06 Mpls.> Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are you on? I may need to go on the patch if I continue to have allergies/side-effects to my pain meds. We took our little Doxie (Lola) to the Vet yesterday. Wow! $165 for a blood test, meds and visit. She has a severe gastro/upset but the meds are already helping. My granddaughter gave her ice cream and that may be the culprit. I give her a lick off the end of my spoon but she gave her the whole bottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for you girl! Glad the heart is ok and sorry about the Sjogren's. I don't know much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

[Guest guest]

, I'm no expert, but if her SATS drop to 84 while walking WITH

oxygen on, she needs more oxygen! Our SATS should never be allowed to

drop below 88 or 90. Less than that and you're depriving your organs

of oxygen.

Her Doc needs to administer the 6 minute walk test and see exactly

what her O2 needs are. And, unless your Dad is a physician he's not

qualified to judge the settings. My hubby is forever telling me

where to set mine and I just tell him to produce the diploma that

states MD on it...LOL!

Hugs!

Babs in Texas

>

> Hi

>

> I know this subject has appeared quite often - yet now that it

applies to my mother :-p am wondering if there is any treatment

modality to keep it from getting worse. Just received the echo back

today - her fibrosis hasn't worsened too much in the past year, but

feel she is not getting enough oxygen - we keep it on 2L yet when she

walks, it all changes..

>

> My father believes to keep it at 2 when walking - he is difficult -

I know her sats drop to about 84 when walking with the pulse oxymeter

- she is uncomfortable using a continuous flow portable

>

> Any feedback would be much appreciated..

>

> for Dee IPF 10/06 Mpls.

> Kim/Caro

>

>

>

> KIM... Hey I like that 'retail therapy' : )

> Works for me! Tell me about your pain patches, what brand are you

on? I may need to go on the patch if I continue to have

allergies/side-effects to my pain meds. We took our little Doxie

(Lola) to the Vet yesterday. Wow! $165 for a blood test, meds and

visit. She has a severe gastro/upset but the meds are already helping.

My granddaughter gave her ice cream and that may be the culprit. I

give her a lick off the end of my spoon but she gave her the whole

bottom of her cone....out with grandpa.

>

> CARO... you were tired and only walked a mile?! Good for you

girl! Glad the heart is ok and sorry about the Sjogren's. I don't

know much about it and will look it up online.

>

> MamaSher, age 69. IPF 3-06, OR./ Nasturtiums

> Don't fret about tomorrow, God is already there!

>

[Guest guest]

Hi ,

The level of O2 changes relative to activity. I have PH along with

other things. When I am at peace, rested, and just working on the

computer or looking at TV, I may not use any. Sat levels are good.

Get upset about something and the need for O2 increases. When I am

doing laundry up and down the stairs, I use it on 2L plus a bit. When

I am walking from the car to a building (shopping or doctors,

whatever), I have it on 4L. When I work out, I use a mask and max the

concentrator to 6L.

This is not a medical opinion, it's the way I have to live and be

comfortable. When my sats drop, I get uncomfortable physically and

immediately pull the pulse ox. Sometimes I have to increase the O2. I

don't keep it turned up all of the time but monitor it for a minute

then I will turn it down or remove it slowly.

Hope this helps.

ette PH/PF/SLE/MS/AH w/PBC/MI/SPINAL

STENOSIS/OSTEOARTHRITIS...whatever else they can throw my way!

>

> Hi

>

> I know this subject has appeared quite often - yet now that it

applies to my mother :-p am wondering if there is any treatment

modality to keep it from getting worse. Just received the echo back

today - her fibrosis hasn't worsened too much in the past year, but

feel she is not getting enough oxygen - we keep it on 2L yet when she

walks, it all changes..

>

> My father believes to keep it at 2 when walking - he is difficult -

I know her sats drop to about 84 when walking with the pulse

oxymeter - she is uncomfortable using a continuous flow portable

>

> Any feedback would be much appreciated..

>

> for Dee IPF 10/06 Mpls.

[Guest guest]

,

As you probably know, I have severe Pulmonary Hypertension. There are several forms of treatment which will stabalize the progression. I use Flolan, which is a continuous infusion and a big pain. But, it seems to be working.

You tell your dad that if she feels like she is not getting enough oxygen, she is not getting enough oxygen! With Pulmonary Hypertension, the minute that you move, the saturation drops. It can cause gripping chest pain and fainting. My 02 needs shot up when the PH came along. She should never let her 02 drop below 89, even 93 is miserable for me. My 02 needs have gotten so high that I keep a cannister nearby with a mask to slap on when my sats drop. Tonight, in order to take a shower, I had my 02 on 10 and my mask strapped on over that on 15. It worked!

Turning the 02 up for a while to get through a chore or a shower does not mean that you are stuck with that from then on.

Thanks for looking after your mom. You will never regret it.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> Hi > > I know this subject has appeared quite often - yet now that it applies to my mother :-p am wondering if there is any treatment modality to keep it from getting worse. Just received the echo back today - her fibrosis hasn't worsened too much in the past year, but feel she is not getting enough oxygen - we keep it on 2L yet when she walks, it all changes.. > > My father believes to keep it at 2 when walking - he is difficult - I know her sats drop to about 84 when walking with the pulse oxymeter - she is uncomfortable using a continuous flow portable > > Any feedback would be much appreciated.. > > for Dee IPF 10/06 Mpls.> Kim/Caro> > > > KIM... Hey I like that 'retail therapy' : )> Works for me! Tell me about your pain patches, what brand are you on? I may need to go on the patch if I continue to have allergies/side-effects to my pain meds. We took our little Doxie (Lola) to the Vet yesterday. Wow! $165 for a blood test, meds and visit. She has a severe gastro/upset but the meds are already helping. My granddaughter gave her ice cream and that may be the culprit. I give her a lick off the end of my spoon but she gave her the whole bottom of her cone....out with grandpa.> > CARO... you were tired and only walked a mile?! Good for you girl! Glad the heart is ok and sorry about the Sjogren's. I don't know much about it and will look it up online.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> Don't fret about tomorrow, God is already there!>

[Guest guest]

,

The 6 minute walk test is the best thing to request. One should have

been done. They walk you in the same small area. There is no going

out of doors as far as I know. They do increase the amount of oxygen.

If she can not walk 6 minutes they will not push it (hopefull).

You hang in there. You are a wonderful daughter! Wish I had someone

like you looking out for me! Lots of love to you my dear.

ette PH/PF/...

> >

> > Hi

> >

> > I know this subject has appeared quite often - yet now that it

> applies to my mother :-p am wondering if there is any treatment

> modality to keep it from getting worse. Just received the echo

back

> today - her fibrosis hasn't worsened too much in the past year,

but

> feel she is not getting enough oxygen - we keep it on 2L yet when

she

> walks, it all changes..

> >

> > My father believes to keep it at 2 when walking - he is

difficult -

> I know her sats drop to about 84 when walking with the pulse

oxymeter

> - she is uncomfortable using a continuous flow portable

> >

> > Any feedback would be much appreciated..

> >

> > for Dee IPF 10/06 Mpls.