Mark is tied up in red tape.

[Andes]

Actually, this is probably for the best. They obviously are not licensed nor competent nor staffed adaquately to do dialysis for inpatients. This is common in small rural hospitals...often they cannot do it for outpatients either. Would you really want them to do a potentially risky procedure like hemodialysis on an unstable patient without adaquately trained staff in sufficient numbers? Unlikely your insurance (including Medicare) would cover it if they are not certified for this procedure anyway. Although it is not convenient, it sounds like this is safer for him.



I assume you mean his INR (a measure of how anticoagulated his blood is with the blood thinners he is on). Dialysis can really mess up these levels, and is a much more risky procedure on someone who is anticoagulated...it takes special expertise to manage it properly.

(KLD)

Thank you for your opinion, but this is entirely a financial Catch-22 at this hospital. The Dialysis unit is owned by the hospital in Missoula. The staff is trained by them. Insurance will not pay if he is an inpatient. Mark has dialysis in this hospital 3 times a week, and the staff is extremely competent, well trained and licensed, and I certainly would not let them touch my brother if they were not. We may not be a big metropolitan hospital, but the facility and staff are top notch. This is not a decision of the doctors , but the administration, and it has everything to do with the bottom line.

So I made a mistake with the ampersand. I'm sorry. If it is perfectly safe to treat him as a patient with a blood clot on T-T-S and S, and a dialysis patient on M-W and F, why should they risk moving him 100 miles in an ambulance?

I could care less about convenience, I would take him anywhere if it would help, but I dont think his safety is the main focus here.

[lynnifer]

Hope he's better soon. Take care of yourself too.

[Le Todd]

Anne,

Help me understand the situation a bit more, as I'm curious about the dynamics of the body with ALS because I'm ignorant of some of the details.

I assume Mark is getting dialysis because the ALS prevents his kidneys from functioning properly? If this be so, what other organs in his vital system isn't functioning properly? I know he needs a vent for lungs, too. Do some organs just naturally work without much help regardless of a spinal cord injury or ALS or is it just a matter of timing?

[Le Todd]

Now I'm recalling Mark telling me he inherited his kidney problem along with the ALS, I believe, but I'm sure you can clarify for me, Anne.

[RAFS]

Anne,
Glad you came here to be w/us on Care Cure. WELCOME!! Ann, I admire you for doing all that you do for your brothers & for your family. Make sure that you also take care of yourself because if something puts you off your feet because you don't feel well there will no one to care for Mark & Mike. Sorry you had to find this site but glad that you did. You've come to the right place as you've learned this already as I've read some of your other posts since joining Care Cure. I hope that Mike will decide to join us here. He will be welcomed with open arms.
Please encourage him to get his system working so he can use the computer himself.

I'm so sorry to hear that Mark has a blood clot in his leg. Now I know the reason that I have not heard from him. Please tell him for me that I'm wishing him the best & hope that he gets to go home soon & be with Mike & the other members of your household. Please say HELLO! to him for me.

Take Care Anne & be well my Care Cure Friend !

BOB S.
Oldsmar, Fl.
Care Cure Member & Your Brothers Fellow Wheeler & Ventilator Buddy !
Trached 2/98 Vent 12/98 Power Wheelchair 12/98 Suprapubic Catheter 2/05 Colostomy 12/09

[Andes]

Mark was the big winner of our parents legacy Todd. We figure he got the ALS from our dad, but none of us have been tested for the gene that can predict the disease. Dad was adopted, and we have no medical history for him. Our mom had Caroli's disease, and that is what affects Mark's kidneys. He isnt a candidate for transplant.

ALS affects the neurons that send the messages to the brain. My guys have bulbar onset which usually starts in the mouth, throat and hands. Limb onset usually starts in the arms and legs. The first symptom for the guys was facilitations under the skin that kind of look like worms crawling under the skin. When they stop the neuron is usually dead. Mark started slurring his words, and his fingers and hands went next. His progression was a little slower than Mikes.
"They" say that it does not affect bowel and bladder, but without the use of legs and hands, a cath becomes a necessity, and the ability to push makes bowel care difficult. Mark has a supra pubic, and colostomy. I don't know what Mike will choose.

Swallowing becomes impossible, and speech goes to hell. The diaphram stops working, and death usually occurs from respiratory failure. The mind is not usually affected, but there are some cases of frontal lobe dementia.(I'm not sure if that is the correct term) Vision is not usually affected, but in Mark's case, the muscle that lifts his right eye lid has stopped working, so we keep that eye patched to avoid corneal abrasions.

Choosing to go on the vent is not encouraged by a lot of doctors. It is a very personal choice, and having a good support team is essential , but the vent is not a lot of work and should not be feared. Suctioning has to be done some, but both guys have had their saliva glands radiated, and that helps the excess saliva.

Another side effect is emotional lability. Tears come easily and laughter does too. Couple that with being Irish, and you buy Kleenex in bulk.


The quality of life of a PALS depends entirely on attitude. Mark never has a bad day according to him. He finds the craziest things to keep his mind busy, and he has friends all over the world. I hope Mike will adapt as well as Mark has. Mark takes care of the families accounts and pays the bills. He does our taxes, and is the family bulletin board. He keeps us all informed on what is going on with all the fam.
I hope that answers some of your questions, but if you have more, please ask.

[Le Todd]

Thank you, Anne, and I echo the members here who adore you, because I'm one of them.