Worried about Steve

[pittsburghgal]

A gastroenterologist does not do the rig procedure. That is done by an interventional radiologist in the radiology department of a hospital.
So glad Steve has decided to go for the feeding tube.

Sharon

 

[Nikki J]

A GI would do a PEG. An interventional radiologist would do a RIG ( PRG)

 

[scaredwifetx]

So our referral was to a GI so can I talk with him and be referred to an interventional radiologist? With Steves breathing I think the rig is better from researching but we were not referred to one.

 

[lgelb]

Sorry if I was unclear. As others have said, this is the wrong kind of doc if you want a RIG. You can hear his take on it, or ask the clinic about IR referral (interventional radiology). Or find what you consider the best hospital for Steve and look into their IR dept. (probably on a Web page). Don't expect a gastro to refer you to radiology -- like the Hatfields and McCoys.

 

[scaredwifetx]

Thank you Laurie.

 

[scaredwifetx]

I am so worried that I am not making the right decisions. I have to be at work today and our doctor doesnt seem to be very helpful with all of this. My gut tells me he needs to get a rig with all of his breathing issues and anxiety. Will email the clinic and see if they will contact me. Good Lord, I am trying to work and keep my job but I really want to be home taking care of making sure he gets the procedure that will not make things worse.

 

[lgelb]

No one has to sign on for anything today. It's just a consult. But I'm sure UT or Baylor has an IR that can do this. Do you have access to both?

 

[scaredwifetx]

You are right Laurie. I will go with him to the appointments and ask questions. We can make the decisions later. I need to look at his Aetna/ medicare plan to see if either is in network. We put a message in with his clinic to call us to see if they can recommend someone.

Thanks Laurie and sorry for all the posts. I am a worry wart.

 

[affected]

You have every right to be a worry wort - if the CALS doesn't do all this, who the hell would???

 

[scaredwifetx]

Thank you Tillie. I have been trying to do my best the past few days. We do have to worry about their health. I have has a nurse in my house that asked my husband what ALS is, A Trilogy company that has never provided one for an ALS patient, messed up his settings
and Doctors who know very little if anything about ALS. S

I called Dr. Heitzman this morning. I asked about the blood pressure issues, Steve FVC and the peg vs. the rig. He told me that he has been working with ALS patients for over 25 years and does not feel that the PEG surgery should have any issues at Steve's FVC. He also told Steve that he should not be getting a peg now just because of breathing issues. He even told me he had patients who did not get them until their breathing was in the teens. I am sorry but I disagree. Steve weighs 150 pounds, is visibly having breathing issues and anxiety. Dr Heitzman referred the Peg doctor and did not give me a name for a interventional radiologist. We will need to find one on our own or have the peg. The appointment is tomorrow.

We did see his GP today and he was put on a low dose of diltiazem ER. He is also going to start taking a very low dose of clonazepam at night for the anxiety and to relax him so he can sleep.

 

[affected]

It is so very hard when you feel you have to not only advocate, but work it all out for yourself and then fight! He is probably right, that over the past 25 years he has sent PALS for pegs with low FVC because the RIG is becoming increasingly the first option for PALS. But it hasn't always been that way.

Some doctors will continue what they have always done because they have always done it, while others will try to keep up to date with the latest research and findings and practice continuous improvement.

Amidst it all you need to remember that you are the best wife in the world, but you are not god and are battling uphill in these situations and cannot produce miracles every time. I know you, like our other CALS have actually produced some miracles at times, but you can only do so much. Believe me I tried to produce all amount of miracles too.

I hope you can find someone to refer you to an IR so you can make the best informed choice.

Chris's MIP and MEP was at 30 about 4 months before his peg procedure and he never had a bipap. We do know that there is a far higher success rate being reported on the RIG, so if I had Chris here now and a choice I would suggest he try a RIG. At the time, only 3 years ago I didn't even know about such thing as a RIG!

 

[scaredwifetx]

Thank you Tillie for always being in my corner and for putting things into perspective.

We will go to the PEG consult and afterwards I will do some research and find a IR to give us a consult. I hope to fins one under our plan.
So very tired tonight.

 

[lgelb]

Deb,
Let me know what hospitals are in network for you and I can research IR options. The neuro sounds like he is not up on the latest research -- not uncommon. Hope Steve does better tonight!

 

[scaredwifetx]

Thanks Laurie. I will get the info for you and get back to you in the morning. Took meds for allergies and am fading quick.

 

[scaredwifetx]

I hate this disease and what its doing to us but most of all what its now doing to me.

We went for the peg consult with the doctor that we were referred to. Steve seen this same doctor a few months ago. At that time he told Steve he doesn't need the peg yet.

Today we were told the same thing. I explained Steves breathing issues and that his FVC was down to 47%. I told him that I have been told and have read research that it should be done before the breathing got to bad.

He proceeded to tell Steve and I that since Steve is still able to talk and eat without losing weight that he didnt need a feeding tube yet. He even asked where I was getting my info.

Both his Neuro and the PEG doctor agree that he can wait until his FVC is lower and that he shouldnt be getting a tube just because of his breathing. Of course he said he would it if Steve said so but he was on the fence. All he did as an exam was have Steve cough and listened to his lungs. He told Steve that if his breathing got to low before his need for a peg, than its the breathing thats the problem. He then mentioned a trache. I told him we werent doing a trache and the doctor just looked at me.

I got very upset and started crying before we even made it to the car. Steve thinks the doctor knows what he is talking about and even said I am always jumping to his being worse then he is.

I am upset because I have to make decisions and its so confusing when what you read and being told is so different. Its so dang confusing.

I ended up in a huge fight with Steve. He told me that there wasnt anything I could do and that his breathing was going to take him out. That basically, he didnt feel the need for clinic or any of the measures I am taking.

So...what he is saying is that I over exaggerate how bad he is. I told him that he buries his head in the sand, lives on the couch. You can see how this turned out. I feel terrible for losing it. We have had very few arguments in our marriage but I completely lashed out and said things I can't take back.

I guess his disease and if he should call the shots. I am so angry and confused. Steve thinks I am saying I know more than his doctors.