We spent the better part of five hours in the emergency room overnight Saturday into Sunday. Not sure of the cause but inability to urinate was the symptom and emergency catheterization was the result. My PALS has been fighting a pulmonary infection and it may have been related to to the meds for that. Any trip to the ER is an ordeal, but , when you are fearful of involuntary intubation (vent), infection and other risks the trepidation increases.
So here's the rant. The "beds" in the ER are designed for stretcher to bed transfers. They aren't height adjustable so I had to do a risky lift rather than a simple pivot transfer. After a struggle to get the bipap in place(breathing is an ordeal in that position without it) the procedure went smoothly. I know I hurt my back then...and I REALLY knew it as I crab crawled to the bathroom this morning.
More rant...
The anxiety of the pulmonary infection, compounded by the stress of the urinary problem and subsequent catheterization had my PALS in low spirits. At four am, who's thinking clearly? We were so eager to get out of there that we didn't even notice that they changed the collection bag from the larger, hanging variety to a strap to the thigh thing that probably works just fine if you're walking about with gravity on your side and not confined to a chair. About one quarter full and the thing starts to back up. What were they thinking?
So, we were told to speak with our doc at the ALS clinic for follow up. I started calling and e mailing at 8:45 am and it's now almost four. NO CALL BACK. Meanwhile, I left a message for my own primary care guy for some help with my heavy duty back pain. He called me back within the hour and prescribed the appropriate meds for my back. Great! What I really want is to get the call back for my PALS from the "team" coordinator...or the neurologist...or the pulmonologist...or SOMEONE who can guide the care of the person who needs it most. If nothing else, an e mail advising which Urologist to call. We hardly ever call these folks so it's not as if we are a bother. Nor are we crying wolf. What's wrong with the system? We just visited the clinic a couple of weeks ago ! I can get a response for my run of the mill sprained back in under an hour, yet this PALS of mine (who has been living a full life despite complete motor function loss for over ten years has to wait over eight hours to get someone to pay attention...and still waiting
Rant
There is something very wrong with the system!
Thanks...I guess many of you know it feels better just getting it out there.
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I Don't Understand...A Rant
- By rodger
- Posted May 21, 2007 at 4:00 pm · 5 replies
- In Children and families
- Shared with the public
5 replies
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- Newest first
- By Oldchuck
- Posted May 22, 2007 at 2:44 pm
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Rodger,
My goodness you have cause to more than rant. A little rage is appropriate for this Mickey Mouse treatment all around.
You are the strongest advocate for your PALS whenever and wherever. That means being more assertive and even a PITA if necessary to get the proper care. A follow up with the hospital in which the ER is located to point out the shortcomings in their ER for handling an ALS patient is a must. You may have been the first one to live through such an ordeal. (Pun intended.) I suspect you may be going back there one day, and wouldn't be nice if they knew of their shortcomings and had fixed them by your next visit.
You should not be straining your back lifting and shifting a patient while in the hospital. The nursing and aide staff should be sufficient to give quality care. If you felt that you had to help lift to get a safe transfer, then that is a major safety defect for the ER and must be brought to their attention.
Finally, there is no, NO, excuse for an ALS clinic being as unresponsive as the one that you are using. If they are, then the clinic director needs a visit and the sponsoring organization (MDA or ALSA) should be brought in to cure that deficiency on the part of the clinic. Or, I hate to say it, find another clinic or team that is responsive.
Do not let this rest. It is sometimes easy after an incident such as this when things begin to back into some sort of normalcy to say, "Oh forget about it." You cannot afford to do that because the next time you have to depend on the ER and clinic in an emergency you surely do not want to run into the same issues. Let your rant and rage be productive and follow through with both the hospital and the clinic.
We only get good service when we insist on good service and in this case it could be a matter of life and death.
Ole Chuckles
- By RochesterBarb
- Posted February 26, 2008 at 11:50 pm
- Report post
Gee, I'm glad you said all of that. Glad I'm not crazy. The longer my sister has ALS, the more "professionals" I meet who are so unaware of ALS and who are just so used to patronizingly dismissing anyone who tries to say, "but patients with THIS disease need...(insert current need here)". The few people I meet who are not burned out keep my hopes up that somehow, somewhere, I'll find solutions to all of the needs.
Today I had the MOST bizarre discussion with a representative of our utility company. My sister lives alone and has moved to a one-floor condo. She is in end-stage ALS and wants to stay at home until the end. She has aide service 24/7 and uses a bipap 24 hours a day, except when she eats two quick meals a day. She can't be off the bipap for more than 15 minutes or so. Our utility company has a list whereby people who are on life-sustaining equipment can be served more quickly when the electricity goes off unexpectedly (we live in a high wind and snow area). They denied her a place on the list telling me "oh, bipaps are only used to let people get a better night's sleep; they're not life-sustaining". If my sister were not using the bipap, she would have died last summer. Despite the doctor's statement, despite sending them info to the contrary, they are acting like they know more than the ALS specialist! And that type of scenario seems to happen all the time.
I know there are many wonderful people who work in the ALS clinic, but if a worker is not in that field, I have felt since the beginning that no matter how hard I try to communicate clearly and politely, it's like I am speaking a language from outer-space to anyone in the medical field who is ignorant of ALS. Even (or should I say especially) hospitals! My sister had to sit on one of those terrible, hard gurneys for 12 hours with no way to go to the bathroom and no way to change position and no gel mattress or anything. It was sheer torture. Even in her room they couldn't get her a gel pad or anything. The week there was SO difficult! We hired aides to come in, since I had 2 other close relatives in two other hospitals at the same time, and then the nurses were offended, but they just didn't understand that when you can't move (my sister has quadriplegia now) you can't buzz the bell! And you can't swish a fly off your face or wipe your nose, or anything else. I am only one person and even without those other ill relatives, I can't be her hands 24 hours a day.
Thanks for listenin'.
- By AmberW
- Posted March 11, 2008 at 11:38 am
- Report post
Rodger,
After reading this discussion, I wanted to look into this particular situation, specifically in regards to the ALS clinic not calling you back, even though I understand it happened quite some time ago, as it was very concerning. It sounds like this was a terrible experience for you and the PALS you care for. I called your local ALS Association Chapter at 301-978-9855, and it appears as if the situation was eventually resolved, and that you were connected with an ALS clinic not affiliated with the Association. I hope this is the case, and that you and your PALS are able to get the assistance you require, especially in times of need. Please feel free to contact The ALS Association if you have any other problems, concerns, or questions or just need help. You can reach us at the National Office by calling the Patient Services Department at 800-782-4747, or via email at alsinfo@alsa-national.org .
Amber
- By RochesterBarb
- Posted March 12, 2008 at 9:11 am
- Report post
Dear Amber,
I am one of the other repliers, talking about the bi-pap machine. In my situation, what I did wrong was not realize that the entire system is not called a bi-pap. I didn't know the larger machine is called an "oxygen concentrator", and that also, I could have been using a marine battery with an inverter for temporary utility outages. I don't want to go off ranting at someone when the mistake was my own. I HAD talked to the oxygen company who provided the equipment, and they are who told me "she's on a Res-Med bi-pap", but my question to you is this:
It seems as though even seasoned professional have probably never dealt with someone with ALS, since in my city of close to a million, only around 100 people are alive at any one time with this disease. I am told by our local ALS clinic that more people are diagnosed with ALS than MS, but the PALS just die sooner. SO, am I right in coming to the conclusion that I need to always ask 2 or more people every question I have and not rely only on the professionals to whom I've been referred? In this situation (how to handle power outages) I had asked the nurse at our ALS clinic and she had told me about the utility company's "fix first" list, but then when I filled out the form and marked "bi-pap" the utility company replied that the national guidelines from the PSC lists bi-pap as NON life sustaining. Well, I called the PSC and they couldn't even find any guidelines, and also assumed and continued to assume I was talking about not being able to pay the bill. I mean, that was all he could find on the issue. To make a long story shorter, it is solved now, but it took around 40 or more hours of time in emails, phone calls, trips to the store and searching on the internet for a "pure sine wave" inverter. The medical equipment company told me that Sears and WalMart carry them, but they only had "modified sine".
Is this par for the course? I have attended our local ALS support group, but everyone there has a spouse and my PALS (my sister) doesn't. So everything my husband and I set up for her needs to be with the idea that an aide will have to use it, based on reading written directions I compose. Am I the only person who seems to be asking the wrong questions or the wrong people? Or is it like this for everyone purely because most of the professionals don't know about ALS? (A note: we live about a half-hour away, so in a blizzard, we wouldn't be able to get to her in time to start the generator. The marine battery/inverter system is with the idea that it's a short outage; the generator we got would be for longer outages, and we have three friends closer by who have agreed to come start it in an emergency. None of the emergency services such as fire dept, ambulance, or police can deal with generators, for insurance reasons. We cannot install an automatic household generator because she rents her condo. She uses the breathing system 24/7 except when she is eating for two 20 minute meals a day.)
Just wondering.... I THINK I'm a good communicator because my trade was interpreting before I had to take a leave to coordinate my sister's care... but it seems to always take 3 or 4 or more tries to solve any one problem...
Thanks :)
- By AmberW
- Posted March 24, 2008 at 5:42 pm
- Report post
Dear Barb,
It sounds like you have been through quite a frustrating ordeal. Unfortunately, you are probably not alone in that many others have probably experienced similar circumstances. It was heartening to read that after many trials and tribulations you were able to find a solution to this important problem for your sister. It is great that she has such an advocate and support person on her side.
Hopefully you won’t come across such difficulties in the future, but if perchance you do, perhaps you could consider giving the Upstate New York Chapter a call at 315-689-3388 to see if they could be of assistance or encouragement with any problems that arise.
Thanks for sharing your thoughts and feelings about this challenging situation with me.
Amber
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