50 ways to leave your clinic

[Tomswife]

Slip out the back. Make a new plan.
We are done.
With the clinic that is.
Too many balls dropped. Too much effort on my part pushing for care. Too many delays of weeks and weeks. Screw ups.
If they really have 500 patients. They now have 499.
- made virtual appt with the neurologist who helped us during dx time. He actually said bulbar onset ALS correct dx. And sent us to columbia for care.
- asking internist to care for Tom.
- will need pulmonary specialist? The one at the clinic only measures. No advice or therapy.
- will need GI specialist. Due to peg tube and current condition of loose stools.

Thoughts? Other specialists?

Thanks.

 

[ShiftKicker]

I don't have any advice, except to say, good for you. ALS clinics are supposed to make things easier- coordinate care, respond to questions, provide information and medical support. If they aren't doing it, and are in fact making it more complicated by delaying response or not responding at all, then creating your own care team is absolutely appropriate. I do know there are people on this forum who have made the same choice (or were forced to) because their local ALS clinic was actually a barrier to adequate care, so I am sure folk will weigh in with lots of advice.

 

[Nikki J]

Good luck. If you have an internist and a neurologist willing to work with you that is helpful. what do you still need for equipment?

re the gi changing out the tube is pretty easy. Make sure the new one isn’t fussy about taking someone else’s case and when you go tht they will have the right replacement on hand.

if he has new loose stools have you evaluated possible causes - meds and diet?

hoping for a less stressful situation for you

 

[Tomswife]

Since i have no medical support. I dont know solution for loose stools
I will ask internist.

 

[Nikki J]

You know if he is taking meds especially relatively new ones or different doses and if he has had a diet change. Those should be the first thing a doctor asks is he on relyvrio? Diet change because of swallow or now on formula?

 

[KimT]

I have a "home team." The 2.5 hour drive is just too much for me. I was very fortunate when I suffered from a traumatic brain injury in 2013 that my neurologist from a previous car accident ordered tests. My neurologist specializes in pain management and he will write or renew any meds I'm taking or will need. He has had other ALS patients who were very happy with him. He has a six month wait but I have a standing appointment every three months. Short drive (15 min.). My primary care is an MD but very "integrative" in her approach. She respects my knowledge and education in nutrition and we work together. She will also write Rx in place of my gastro (GERD) and cardiologist (benign arrhythmia) so I only need to see them when it's absolutely necessary. I've known both of these doctors for over 20 years.

I decided to switch pulmonologists. My old one was okay but there is a new guy three miles from me and he is taking new patients. I have all my own testing equipment but will no doubt need him in the future.

I've also had the same gastro for over 20 years and they have their own surgery center. For a feeding tube, I'd probably go the radiologist route. Advent Health is only five miles from me and they are a full-service hospital.

I can still go to Mayo or University of Florida, if needed. You don't need a clinic to get durable medical equipment orders. My local pulmonologist got me a Trilogy, no problem.

Get your team in order and make sure each doctor understands ALS. I only work with doctors who understand it or are willing to learn.

 

[affected]

We only did 2 clinic visits, first for diagnosis and then went back once more. Very different situation in Oz, but still just to say that our clinic was in another state as I am rural and near a state border. So 3 hour drive to that clinic or fly to Sydney. But this meant they could not order services or other help for us due to health departments being separate.
So we found a physician who was interested in ALS, we did a lot through our GP, and saw a pulmonologist separately, Gastro, Speechie, Dietician, OT, Massage and PT. I became the link between them all but it meant most were 15-30 minutes away and it was easier to do things separately for us than the 3 hour drive that could turn into 4-5 if clinic times put us in peak hour traffic.
You don't need to discuss much - don't burn your bridges with the clinic. Then if you have a need later and it turns out they can help or whatever...

 

[Buglaw]

I dropped a clinic too. I actually really really like the neuro and speech therapist I worked with there, but they just didn’t have the back office infrastructure to work with insurance. It took the nurse there 30 days to submit my Relyvrio and Radicava prior approvals and at least 3 days for all my questions. I went to a larger clinic and they get the paperwork out in 1-2 days max. I’m fortunate to be in a big city with several excellent ALS clinics to choose from.

 

[Tomswife]

Buglaw. May i ask what city?

 

[Tomswife]

Nikki.
We do both isosource and food. Typical is isosource 8am, then food rest of day. With water in tube at least 2 more times.
Just started benefiber gummies.
The only newish drug is Relyvrio. But this is week 3.

 

[Tomswife]

Today and yesterday have been difficult. Sling over bedpan not ideal. He cant go.

 

[Nikki J]

If isosource is newish or he is taking more could be that. It could be the relyvrio catching up with him too. If it were me I would pause the relyvrio for up to a week to see. I would say call your neuro np but…..

 

[Buglaw]

Yeah! Im in Chicago.

 

[affected]

That isosource could have a lot to do with loose stools or the relyvrio.

 

[Mary2]

Tomswife...when Tom is in the hoyer lyft is he in a sitting position? It is easier for my Pals if he is in the sitting position. We have one hoyer mat where PALS is sometimes sitting, but other times is laying back more. I have yet to figure out what causes this, but I think it is something to do with the position of the hoyer mat split legs on the backs of his upper thighs.