Worried about Steve

[Nikki J]

I am so sorry you are dealing with this. You are trying so hard and doing so well and encountering unfair roadblocks.

Will Steve look at links?
Someone posted this one recently from Mass General that supports what you are telling him Feeding Tubes for Patients with ALS - Massachusetts General Hospital, Boston, MA

this is what my sister was told and her choice to delay against medical advice almost killed her in spite of her having a RIG she had severe respiratory complications

If you think more links and studies would help I know they are out there and I will look for them if he will read them.

But of course you can only do so much. Do not blame yourself

 

[affected]

Oh Deb,
Sadly you don't know more than his doctors in the full sense of everything medical, but you do know Steve and his issues better than his doctors.

You can only do so much, at the end of the day it is his choice, whether he takes advantage of all the information you can supply or not, and whether he is fully able to put cause and effect together to make good decisions.

Please just never blame yourself that you should have done better. If it were your body, yep you could make all the decisions and argue your own case out with doctors. But it's not, it's his at the end of the day and us CALS are there watching.

I hope you can be kind to yourself. It may be worth just going back to Steve and telling him you are really stressed and did not mean to lash out at him, and though you can't take your words back, you did not mean to take things the way they went.

huge sister hugs to you xxx

 

[scaredwifetx]

Thanks Nikki, I am going to read your link to him. I am beyond angry at this point. To tell us that if Steve's breathing gets to low for the peg that its not the stomach fault and that his breathing will require a trachea. This disease is hard enough without not being able to trust your doctors. Steve has not researched or looked up his disease one time, so that means I have to. I am his wife and cant even imagine watching him starve or has breathing failure because he waited to long.

 

[scaredwifetx]

Thanks for the hugs Tillie. This day will haunt my memories almost as bad as the day of diagnosis. Steve will have the procedure to make me happy but if anything goes wrong.... I will be blamed. I also know... that I no longer trust the doctor. I will need to take the time to find a doctor to do the rig. He has Aetna Medicare Choice PPO so if he decides that he should get the rig, I hope we can get in soon.

 

[affected]

Remember Laurie very kindly offered to do the background research for you for an IR ... take that up, she has all the knowledge to sit and do that calmly while you just get over such an awful day.

I know there were too many times I would bring something up and a stupid health professional would disagree and since Chris didn't like what I was saying that would just clinch it for him and it was all over.

 

[scaredwifetx]

hi Laurie...we all talked and agree that we should consult for a rig. His plan has both Baylor and UT hospital in Dallas as approved hospitals.

 

[soonerwife]

Oh Deb, I hate this so much for you.... If ALS isn't bad enough, you have doctors that clearly don't get it that you have to deal with. This makes it even more difficult when you have a PALS that is hesitant to take things or have medical interventions and you have doctors telling him he doesn't need things. Beyond frustrating! I am so sorry you are going through so much. Hopefully Laurie can help find someone to perform the PRG procedure and Steve will reconsider. UGH! He had agreed. Makes me so mad! I wish I could help in some way. We are here for you! HUGS!

 

[scaredwifetx]

Thanks Soonerwife. You are a friend and it makes me feel better getting your virtual hug. Hugs back. It certainly has not been easy for you either. I am so amazed by everyone here. The strength and love on this forum could certainly be used to shiw the world what really matters.

I have calmed down a little. Steve read the link Nikki sent and us going to do a rig once we get an appointment. He listened to my ranting and understands that this doctor is saying this when he didnt do any tests or take into consideration the issues hes having. I told him how sorry I was for coming unglued. He already knows my heart .

I am so sorry for my rants on this thread when we are all dealing with so much. I am so thankful for everyone here.

 

[affected]

I'm so glad you got to sit and talk again after all had calmed down a little and I'm sure he knows your heart.

Huge thanks to Nikki for providing the right article to bring things back around!

Never apologise for your posts, that is what this place is here for! Imagine if you just sat back alone and cried and decided you had been defeated, and told no one? You would live with that the rest of your life and blame yourself!

Just like Steve needs you to research and advocate for him, you need support to get through it all xx

 

[scaredwifetx]

You are so right Tillie. I wish we didn't have limited thank you clicks. To many to thank tonight. Huge thanks to Nikki!

Now I hope we can get an appointment before he changes his mind.

 

[lgelb]

So I started with UT. The GI subspecialist in interventional radiology there is Dr. Kalva, 214-645-8300, so he would be a good place to start. But then I got confused. Why are you guys not using the ALS clinic there? They normally would refer their pts to IR at Southwestern, do you see what I mean?

 

[KatieNBoyd]

Hi Deb, Sending you hugs. I am forwarding the link Nikki sent you to my PALS for him to read over. But ultimately I know it is up to him as to what he want to do or not do. These forums and wonderful men and women that are helping all of us together get through this just one more day is truly a blessing.

 

[Nikki J]

I could not remember when I posted who had first found the link. It was vw-fi who did. Thank you vw-fi

Deb I am happy Steve is willing to pursue a RIG

 

[scaredwifetx]

The first Neurologist we seen told us it would take months to get an appointment UT and told us to call the Texas Neurology Group. They were able to get us in for the tests and final diagnosis/second opinion in a couple of weeks. Our first Neuro did not treat ALS. The set us up with Dr. Phillips and the clinic there. We would have loved to get in with UT but they could not see us for months.

Now we are trying to figure out how to get around the private doctors to get a rig? You don't know how many times they have dropped the ball with equipment, and referrals for bi-pap.

 

[lgelb]

1) Did you call UT yourself about the first appointment or did you take the first neuro's word? All docs have friends or relationships with certain practices, just as with any business.
2) Have you called them since, if you are not satisfied w/ your current clinic? People change clinics all the time.
3) Whether you want to do (2) or not, you can still ask them who they use in IR at UTSW. ALS is a fraternity. Ideally. Or you can just contact Kalva.
4) You don't have to go around anyone. All you need is a qualified IR who wants to get paid for doing a procedure. Which is to say, anyone who's qualified. Once again, people mix and match institutions and practices continuously.
(5) The AAN (American Assoc of Neurology) guidelines say 50% FVC is a threshold. So do the VA's.