Thoughts & Prayers for Laura and Lou(Herk)

[Frank-VA]

Herk Thanks for the update Y'all are in our Prayers.

[dcheatwood]

Glad to hear it.

[Oaklevel]

Great News, Thanks for the update, Ours Prayers are with you as always....

[Herk7769]

Final loading for the Rally this weekend is in progress.
We can not wait...

[F.R.O.G.]

Originally Posted by Herk7769

... We discovered a new Mod for the cycler when traveling and the PD nurses are going to spread the word through their channels.

Also invented a way for her to use a hot tub and swim with it...

Now THAT sounds like Herk! Tinkering, improving, documenting, and getting the word out. Watch for details at a Herk-brary near you.

[Herk7769]

Originally Posted by F.R.O.G.

Now THAT sounds like Herk! Tinkering, improving, documenting, and getting the word out. Watch for details at a Herk-brary near you.

YOU da man!

Thanks for holding her Goshen supplies till we get there. Will be ordering them today (after her month order gets here - no sense confusing them).

Was more like "re-purposing" items to solve problems.

Since when staying at a beach condo (planned in late August) and at our friend's house involve bedrooms too far from the bath to use as a drain, we found we can use a 24 hour urine collection bag as a sealed drain and it holds her drain contents perfectly so she can travel to places she could not before (or with "25 feet of extension hoses" that run along the floor all over the house!).

The other "re-purposed" idea involved using a colostomy stoma seal used for patients with that system for showering, to completely cover her portal, hose and valve so she can swim in a pool or even use a hot tub (normally prohibited). The seal is completely waterproof and disposable.

[Herk7769]

So, our first trip with the dialysis machine (starting Friday) is off to a rocky start:

Storms went through and we lost power to the house about 9PM.

Gave them an hour to get it back on, but with the DW on home dialysis, I could not wait much longer to get her and all her (pre-set up ) equipment moved to the camper; get the generator powered up and connected; open it up and set it up as we would be camping (thus weekend! ) all the while in 90 degree 100% humidity and the dog freaked out from the heavy thunder. Been a while since she was this bad and we could not find her medicine!

Plans for today completely shot as we did not get much sleep while trying to work the bugs out of the dialysis set up I had planned to do in daylight! Turns out the rubber seal on the shower door compresses the drain tube enough to turn on the "slow drain" alarm every 15 minutes till I figured it out.

The unit, plus TWO 5 liter bags of dialysate, and all the filled connecting hoses are heavy!

The PD nurse trainer's advice for this situation (yes, I did ask during training - which shocked them as no one had ever asked before) turned out to be wrong.

They said the machine had a battery that would hold everything for two hours in the event of power failure was incorrect. Turns out no battery and I had to re-run the entire setup checklist to get the machine caught up to the point where she gets connected (when the power failed). Had she been connected, I have no clue as to what would have happened. Call to the manufacturer going out today.

Can't wait for Friday. Luckily, one of our PD nurses and her husband will be camping at the campground just down the road from us this weekend.

[TURBS]

Originally Posted by Herk7769

So, our first trip with the dialysis machine (starting Friday) is off to a rocky start:

Storms went through and we lost power to the house about 9PM.

Gave them an hour to get it back on, but with the DW on home dialysis, I could not wait much longer to get her and all her (pre-set up ) equipment moved to the camper; get the generator powered up and connected; open it up and set it up as we would be camping (thus weekend! ) all the while in 90 degree 100% humidity and the dog freaked out from the heavy thunder. Been a while since she was this bad and we could not find her medicine!

Plans for today completely shot as we did not get much sleep while trying to work the bugs out of the dialysis set up I had planned to do in daylight! Turns out the rubber seal on the shower door compresses the drain tube enough to turn on the "slow drain" alarm every 15 minutes till I figured it out.

The unit, plus TWO 5 liter bags of dialysate, and all the filled connecting hoses are heavy!

The PD nurse trainer's advice for this situation (yes, I did ask during training - which shocked them as no one had ever asked before) turned out to be wrong.

They said the machine had a battery that would hold everything for two hours in the event of power failure was incorrect. Turns out no battery and I had to re-run the entire setup checklist to get the machine caught up to the point where she gets connected (when the power failed). Had she been connected, I have no clue as to what would have happened. Call to the manufacturer going out today.

Can't wait for Friday. Luckily, one of our PD nurses and her husband will be camping at the campground just down the road from us this weekend.

Lou your a man of steel buddy!
Takes a lot of heart soul and dedication!
You keep up the good work and reassure Laura you've got it handled!
We're thinking about you!

[Herk7769]

Should be much better by the weekend.

[DDC]

Good luck this weekend you are having a lot of issues and managing them well, I can't imagine the emotional stress you must be under.

[BamaBob]

Originally Posted by Herk7769

So, our first trip with the dialysis machine (starting Friday) is off to a rocky start:

Storms went through and we lost power to the house about 9PM.

Gave them an hour to get it back on, but with the DW on home dialysis, I could not wait much longer to get her and all her (pre-set up ) equipment moved to the camper; get the generator powered up and connected; open it up and set it up as we would be camping (thus weekend! ) all the while in 90 degree 100% humidity and the dog freaked out from the heavy thunder. Been a while since she was this bad and we could not find her medicine!

Plans for today completely shot as we did not get much sleep while trying to work the bugs out of the dialysis set up I had planned to do in daylight! Turns out the rubber seal on the shower door compresses the drain tube enough to turn on the "slow drain" alarm every 15 minutes till I figured it out.

The unit, plus TWO 5 liter bags of dialysate, and all the filled connecting hoses are heavy!

The PD nurse trainer's advice for this situation (yes, I did ask during training - which shocked them as no one had ever asked before) turned out to be wrong.

They said the machine had a battery that would hold everything for two hours in the event of power failure was incorrect. Turns out no battery and I had to re-run the entire setup checklist to get the machine caught up to the point where she gets connected (when the power failed). Had she been connected, I have no clue as to what would have happened. Call to the manufacturer going out today.

Can't wait for Friday. Luckily, one of our PD nurses and her husband will be camping at the campground just down the road from us this weekend.

Lou,

Really sad to hear about all the difficulties. Perhaps I can help in one area. We have friends who have a dog that freaks when thunder is on TV They got this item and no more drugs and poochie is fine:
Thundershirt | The Best Dog Anxiety Treatment

You and Laura are in our thoughts and prayers daily - looking forward to seeing you at Goshen in 3 weeks!

[Weezer]

Herk,

Not sure if you have it in your state, but here in LA there is a registry for those with health/medical issues that depend on power (oxygen, etc.). This registry is maintained by our power company and these customers are considered "priority response" when there are power outages.

Edited to add: of course this would only be relevant when you and Ms. Laura are at home base, not camping.

[RPAspey]

Originally Posted by Weezer

Herk,

Not sure if you have it in your state, but here in LA there is a registry for those with health/medical issues that depend on power (oxygen, etc.). This registry is maintained by our power company and these customers are considered "priority response" when there are power outages.

Edited to add: of course this would only be relevant when you and Ms. Laura are at home base, not camping.

Yes, in PA there is such a "list" but Herk will have to call his utility, either PECO OR PPL, as they maintain it for their region.

[Weezer]

Yes, the patient or patient's family makes the call. I think it helps expedite matters if a doctor or medical facility letter is provided.

[Herk7769]

Originally Posted by HSVBamaBob

Lou,

Really sad to hear about all the difficulties. Perhaps I can help in one area. We have friends who have a dog that freaks when thunder is on TV They got this item and no more drugs and poochie is fine:
Thundershirt | The Best Dog Anxiety Treatment

You and Laura are in our thoughts and prayers daily - looking forward to seeing you at Goshen in 3 weeks!

Have a tight field vest that seems to help normally, but between the thunder and mom and dad running like chickens really did her in. Good news; found her meds so we should be ready if we have a repeat tonight.

[Witch Doctor]

Your a good man Herk, and may God bless you and Laura, I'm hoping to see you in Goshen, May you have safe journeys together. Your quite a man my friend and she is quite the lady. Best wishes to both of you.

[Herk7769]

Originally Posted by RPAspey

Yes, in PA there is such a "list" but Herk will have to call his utility, either PECO OR PPL, as they maintain it for their region.

OK, I checked this out and here is the PA "skinny"

Yes, there is such a list.

The person must submit an application to get on the list.

The paperwork must be signed by a medical professional (a nurse will do).

The application is only good for 30 days and must be re-submitted every month.

Since nearly every street in PA has at least one person on the list, the only real priority is given to patients on respirators (who get bumped to the top).

In reality, no one else gets priority restoration services.

Power is restored by the maximum amount of customers that can be restored in order of actionable failure.

Transformers off public access roads are served dead last after all transformers/poles on public byways have been restored unless a respirator dependent person is off that private road.

Another great idea ruined.

[Weezer]

Is a whole house generator an option for y'all?

Mom was on oxygen for the last three years of her life, and while we got them on the "first fixed" list, Dad has the whole house generator for "insurance" (as he's approaching that situation quickly now).

Or maybe solar panel for part of the house....there were HUGE rebates for installation of solar for a few years...not sure those are still in effect.

[RPAspey]

Originally Posted by Herk7769

OK, I checked this out and here is the PA "skinny"

Yes, there is such a list.

The person must submit an application to get on the list.

The paperwork must be signed by a medical professional (a nurse will do).

The application is only good for 30 days and must be re-submitted every month.

Since nearly every street in PA has at least one person on the list, the only real priority is given to patients on respirators (who get bumped to the top).

In reality, no one else gets priority restoration services.

Power is restored by the maximum amount of customers that can be restored in order of actionable failure.

Transformers off public access roads are served dead last after all transformers/poles on public byways have been restored unless a respirator dependent person is off that private road.

Another great idea ruined.

Ok. I learned something there. I had no idea it was a 30 day cycle. That isn't know by the average employee where I work.

My company usually does restore as you have stated, precisely. Biggest number of customers with minimal effort first. Then restore the main feeders. Finally connect the single customers.

I know though that there have been expedited restorations due to medical conditions. Today we had one in which a person was on oxygen, but not a tank, it was a generator. This person called to report the outage, and just mentioned her condition. The crew was sent to restored her power as soon as that particular circuit was restored. Her neighbors won't get power until possibly Saturday afternoon. Was it priority or could it could have been that that crew's dispatcher has a soft heart too.

BTW, another 16+ hours on the clock. Another day tomorrow. I'm tired and going to bed. Gotta be back in the office in 6 hours.

[ResQfrog]

Herk,
Good luck this weekend. Can't wait to see you both at Goshen.