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Many of us stopped going to clinic at some point. If you are wondering about hospice, morphine and the like, a primary care doc or other community doc can write those things.

If the process exhausts your husband and does not add value, why do it?

I hope you get whatever you are aiming for with the faxing. Many institutions can't or don't want to deal with HIPAA-compliant email (essentially, either using secure credentialed portals or coloring outside the lines) so they cling to faxes. You will find smaller practices often more willing to do email.

Best,
Laurie
 
If you're all set with equipment or have other good docs maybe even closer nearby I completely understand not wanting to go to clinic. I'm thinking of suggesting it to my PALS at some point but maybe it'll be good for us to go there once more to get prescriptions for backup breathing equipment as his local neuro knows nothing about this.

Glad you could have a little breather. Stay strong for the task to track down help!
 
Yes, I think we probably need one more visited the clinic for the backup breathing, bless the can prescribe it without seeing him. and then I will probably have him reconnect with his primary care doctor who we can make an appt with and not sit all day. He has been on clinical trials until he progressed too much so we were at the clinic quite a bit, it isn't very far, just a long wait. I hadn't thought about the HIPPA requirements, Laurie, that is probably why they are faxing. I will make more phone calls today.
 
We seem to be at a similar point. The backup breathing is the only thing he'll need prescribed at some point and therefore we need someone to measure breathing function in the context of ALS.
Questioning everything you do in intervals, like clinic, therapy, anything really, can hugely help to get the best care and reduce stress. My PALS decided that he won't prolong speech therapy. Guess he learned what he could and now it just seems like one more thing to do.
 
Another night when I can't sleep, which is ironic because my husband took a turn for the worse this week and we had very little sleep. He is doing better now, after adding some new medicine and systems to help with his congestion and breathing. But he couldn't eat any solid food for a couple days so I know he lost weight. He is back to eating again, but we are going into the clinic to talk about a feeding tube next week. He is having some difficulty swallowing and I don't want to wait. He seems weaker after this week. He had a chest X-ray and no pneumonia, thank goodness.

I also had a local ALS agency suggest I start looking into hospice palliative care. So will start that soon. I am trying to get some nursing help, but the paperwork keeps getting messed up between the clinic and the agency. You can't make this stuff up, Hopefully, it is on track again, at least that's what they told me Friday. This week scared me, it was hard to know what was going on, as he has been relatively stable for a while and went downhill fast. The nurse at the clinic says that happens sometimes. I don't know how I am going to handle this next phase. I asked the clinic for anti anxiety medicine for him as he was very stressed and they just told me to have him use the triology more during the day (he usually just uses it at night) which didn't help. He is willing to do the feeding tube, but doesn't want a tracheotomy. The medicine they gave him for his cramps doesn't help, either.

And regular demands of life goes on, I have to spend time over the foreseeable future helping one of my children who needs me, not sure how I can do it without getting some help in here.
 
It's awful, that feeling of no control isn't it? You would do anything, but you often seem to be running in circles.

I'm surprised the clinic didn't give you something for the anxiety. Does he still see his PCP at all, as he can prescribed Ativan or some clonazepam in tiny doses that can be put under the tongue and work immediately.

Hospice are likely to prescribe this if you can register with them quickly too.

I hope you an get these helps in place quickly. Often we sleep worst when we seem to need it most :neutral:
 
ARCG, My brother stopped going to clinic as well. It was a 2 1/2 hour drive each way on top of numerous people in the medical field doing whatever they did to him. It was simply too exhausting and where he had chosen to let nature takes it course he felt that all they could really do for him was to tell him how much he had or had not progressed. He knew that better than anyone.

Hopefully soon you will get some help/relief. At least somebody to give you a break now and then. Now that your foot is healing you need to be able to take that walk for your mind. A little nature walk with some fresh air and sunshine does wonders.
 
Still waiting on the help, but they said they are making progress getting it approved. Everything takes so long.

Going for a PEG consultation tomorrow. Don't know what to expect and then to the clinic again next week, maybe for the last time, it is getting to hard to go up there and my husband is always so exhausted by these trips, he wonders if it's worth it and I wonder too. We are at the point where quality of life and comfort is so much more important to him, than all the poking and prodding they do at the doctor's offices.

He isn't sure if he wants to do the PEG, but has agreed to the consultation. What happens then, in your experience? I have modified his diet already, but does that mean just a liquid diet? And what happens after he can't swallow liquids and smoothies?

Annie
 
Anne, he can continue to eat by mouth with the peg---just as long as it is safe. When he can't drink the smoothies or when he starts aspirating (it took three cases of pneumonia to convince my husband that he was aspirating), then you either put formula in the tube or blend food for him.

You will also need the tube for medications at some point (we grind them and dissolve them in water and put them in the tube).

I understand the choice on the vent, but think that the feeding tube is a kindness to both the PALS and the caregiver.

Becky
 
EVERYTHING takes so long! Much luck with the help.

I second Becky on the tube. If your PALS doesn't actively want to "keep it short" and declines all interference with nature's way the feeding tube is a lifesaver.

My PALS got his tube this winter and would be dead without it even though he got is before losing weight drastically. It's little maintenance/care, much less work than keeping hydrated. Fluids were a real problem quickly after that. He ate with great appetite for two more month until he had two choking episodes and basically gave it up. I'm so glad there never had to be a choice between survival and safety. No pneumonia so far, hope I can keep him out of the hospital forever.

And it's not like he's being hijacked.
As long as the patient is able-minded he can always turn down nutrition. I made it clear to my boyfriend that he's the only person controlling when and how much he'd eat.
 
Thanks for the insight. I am dreading going for our consult tomorrow. My husband gets so stressed when we go anywhere near a medical facility, I can't wait until the day is over and we are back home. I made a list of questions, so I don't forget what to ask them. No one ever seems familiar with the needs of patients with ALS. It surprises me every time.
 
Went for PEG consult, P.A. Said it only takes 5 minutes, but the will use general anesthesia and no trilogy. They will keep him overnight for observation but then he will be good to go, no pain, no nausea., We don't get to meet the surgeon, as he is too busy, they said. She said they would explain how to use it it to him after the procedure. I reminded her that he has ALS and can't do it himself, so I will need to be with him when that happens.

She didn't seem to know much about what happens afterwards, so my husband told her he would wait to make the decision until after he talks to his Neuro and nutritionist next week. In spite of this, when we got home they had scheduled the procedure for next week without our knowkedge. They gave us no surgery prep instructions and as far as I know have not gotten it approved by our insurance company. When I have had general anesthesia in the last, I as at least told not to eat the day of the procedure. My husband told me to call and cancel it as he feels he needs more info and he is eating ok now and his breathing is obove the levels they need so there is no rush.

She said it is just like going to the dentist. Is it that easy?
 
We advise having the procedure done in radiology (where it's done by an interventional radiologist) so that a general is not needed and he can use the Trilogy. That is often considered the standard for ALS, esp. where there is respiratory impairment and there is no GI reason that it has to be done in surgery (e.g. if your husband had a pre-existing stomach issue).

Since you guys were funneled to GI instead, I will assume that wherever you are going, the surgeons rule the roost on this one. It is often a matter of territory. That they scheduled on spec is not surprising, either. But you have the option to call the ALS clinic and ask for an interventional radiology referral.

General anesthesia is more of a risk than not for anyone, let alone a PALS. I would ask them to justify this one, Anne, and even if you agree with the reasoning, you have the absolute right to meet the surgeon, and should. You should know the experience with neuromuscular disease of anyone who does anything interventional on your husband, ever.

For some people here, to answer your question, it has been a cakewalk and for others, the exact opposite. To get the best odds on that definitely takes more planning and forethought than you have described, and you need a more ALS-specific discussion.

Where in Houston are you getting this done? There are definitely IR departments there! Also remember, you have multiple choices in the TMC and elsewhere, depending on your network. You do not have to get this done at the same place as your clinic.

Best,
Laurie
 
I wouldn't let any surgeon who was 'too busy to meet me' touch me, let alone my PALS.

It really is a simple procedure - but our PALS are not the average patient and deserve a little extra thought and consultation.

Definitely bring it up with your neuro and request to be set up for a RIG which is the way they insert the same feeding tube. Do try to keep him thinking of earlier than later as you want to do this while he is still strong and doing well so recovery is likely to be the best possible.
 
My PALS got a PEG and because of ALS general anesthesia was a no go for the neurologist setting things up at the clinic. They put him in twilight sleep with Propvol, for a couple minutes he remembers nothing and came to very quickly after the placement. I got to pick him up right where it happend and he was quite exuberant because of the drug and because he was still alive. He was quite concerned beforehand and people keep reassuring us that it's indeed more like getting a piercing than a proper operation.

He didn't meet the gastro docs who did it beforehand, they get shuttled in by taxi cab from the building on the other side of the street every Monday to poke holes in PALS, real busy rockstars. ;)

Should
 
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