Andy's Swallowing & Pulmonary Function test

[awieleba]

Lori

you and your family are in my prayers to have the peace that surpasses all understanding.....

Your husband is blessed to have such a caring and wonderful wife!

april

 

[L4dybugg]

Thanks Ladies,

Boy are your stories really touching. Hard not to keep from crying.

We are still trying to remain hopeful. I do know that Andy's first cousin Ronald did not live very long, but I know that does not mean Andy wont. I think Ronald only lived a year later.
But I do have this on a positive note, Ronald's mother was a nurse for over 14 yrs, and she was his care giver, so she knows all too well about it, she does live in another state, but she did say she would be there to help when the time came or 'if' it comes. Andy also has a sister and she does in home nursing. So I will get educated. Plus I have all of you guys ;-).

 

[rose]

Lori, if there is one common thread that runs through the progression of this type of illness, is that there is no way to anticipate the speed of progression. Many neurologists will not speculate either.

Although your hubby did not get such great test results, you were not expecting him to, really, and if nothing had shown up, not only would you have had frustrations (and questioned those in charge of the tests), but you would not have had guidance with what to do now. as far as safe eating practices, etc.

The change in seasons might make this a little easier on you to get him accustomed, as its a time when almost everyone is eating more soups and less corn on the cob and grilled meats, etc.

I think it was good news that they did not feel liquids were a concern for him at present time. Not only is that good for safety and his health, but for him to get a change to become more acclimated to other changes.

It sounds like you're going to get lots of support on here for the meal planning ~ C J, all I can say is "yum!" to the cornbread and pot liquor, I grew up in the south, well Florida is not south, but with "Southern" relatives, and southern style cooking , I hadn't thought of that in so long

Another positive impact following this kind of diet early is that it will save his energy in those muscles. He won't tire them needlessly, whether or not he would be choking. Not tiring is good.

I hope you learn more about the pulmonary function, its a good sign that they didn't suggest that he needed special support or medications before his next doctor visit.

Andy is a lucky man to have someoine that so clearly loves him and is willing to make the effort to learn about what is needed to help keep him safe and healthy as possible.

good luck to you and your family.

 

[L4dybugg]

About Andy's breathing:

I am not really sure to the fullest about his breathing yet. What I posted above was just some of what the guy told us that did the function test. The dr. has not went over the results with us yet on that.

Andy has another appt. with a pulmonoligst on the 30th of this month. He will be going over Andy's chest x-ray, and also looking into his cpap to see if he needs any adjustments there, plus anything else that he may want to do. I will be taking a copy of that report that I posted above to let him see as well, which they may have already faxed that to him. I will give an update on that when I get better info.

I want to thank all of you for your thoughts and your prayers, we 'are' going to get through this. ;-)

Love you guys

Lori

 

[brendapals]

way to go pat!

I agree with the theory that positive mental attitude helps everyone! I'm going to my second ALS clinic visit this tuesday, and I am happy to send them a report that says I'm no different than 4 months ago!

I think the feeding tube question comes into play when there is more choking, weight loss, but it's good to know all you can about it before it's needed.

You know how they always say the rate is cheaper, the longer you take out the loan, or warranty, or whatever. Well, being the queen of bargains, I truly think I have the ALS with the 30yr warranty, Lord knows I had to get a bargain!

Never give up,
Never let up,
Never lose faith,
brenda

 

[L4dybugg]

A Little Update

Andy went to the Pulmonoligst yesterday, but we don't really know anything new, the Neuro forgot to give us back the chest x-ray cd. And the Neuro did not send it to the Pulmonoligst. :roll: From what we can tell so far, his lungs seems to be ok right now.

Andy has to go back to the Pulmonoligst in a few weeks to do another test, I forgot the name of it. Also, the dr. wants to do a CT scan of his lungs to get a better look there. Andy has to bring in his cpap to see if it needs to be adjusted.

We mostly spent the visit just giving him info that he did not have. :roll:

Andy's swallowing is getting worse. He had a real bad time today, he is getting alot more phlegm in his throat. He was constantly trying to clear his throat. This has been getting worse over the last couple of days.

He has been drinking Cola to try to help with that, but it is not doing any good. I don't know what else to do to help him.

I don't know when the Neuro is going to make that appointment to the ALS Center in Nashville, she has not done it yet. :neutral:

 

[rose]

Lori, keep on top of the neuro about getting Andy the appointment... I'd call and pester every day, leave messages, be a polite pleasant nuisance. You could also try calling the center in Nashville and explain that you're waiting on the referral and ask if they can do anything to speed things along. I'd try both approaches.

CT scans are good in that they show detail, but if there isn't a problem in his lungs themselves it probably won't gain you that much more information. which is OK. For example. they found when I was given a CT scan last year that I had some nodules in my lungs (3) and lesions on my liver, so now that is something that is being monitored too just to watch for changes. None of my doctors seem concerned beyond wanting to keep an eye on these places and that's fine by me.

Maybe while you're waiting to get the ALS Center appointment you can work on obtaining the actual films from any x-rays & actual mri films if that has been done rather than just the reports from them. Same thing from the swallow study. Often times the medical centers such as the one you're attempting to be seen at prefer to have their own doctors interpret what is shown by the tests rather than relying on another facilities personnel. Sometimes you can just go sign for the films, pathology slides, (if there was a biopsy done) etc, other times you can arrange for these things to be sent via fedex. The trouble with this is you don't have the appointment yet, but if you have them in your possession, then that isn't a concern.

How is he adjusting to the dietary changes?

 

[L4dybugg]

Thanks Rose for your reply.

Yes I am going to have to call them again, we've called several times already. I'm getting tired of the waiting. I know things take time, but he keeps getting worse, and no appointment yet. No telling how much longer it will be.

Andy did have a muscle biopsy done, and it came back as "chronic denervation and reinnervation". The neuro sent the biopsy to New York. I think this is one of the hold ups, they are trying to get the slides from that biopsy from there. They should have had enough time to get it by now.

I will see what I can do about getting his x-rays & his films.

He is not sticking to the diet. I told him if he did, it would help.


Lori

 

[hboyajian]

Lori, I'm sorry Andy is having difficulty with swallowing and clearing his throat. Those were both disturbing problems for my dad also. He did not have bulbar onset, but developed swallowing issues in the last year of his illness. In his case, he adjusted by eating soft foods for about a year. We used a small, had held baby food grinder so he could have meals at other people's homes or restaurants. We mixed sauces with food that was too dry.

Then, rather suddenly, he was unable to swallow solid foods at all and had to have everything liquefied in a blender to be able to get it down in small sips. I was glad my folks already had a good blender, or this would have been hard to deal with. He also could not drink thin liquids. It was much easier to swallow thicker liquids, juices like apricot nectar and milkshakes. It surprised me that your doctor recommended thin liquids, or maybe I didn't understand something.

I agree with folks who have suggested getting the PEG tube before breathing problems have become a more serious issue. My dad was not able to do this because he was diagnosed very late in the disease progression, and the anesthesia for the surgery was very hard on him.

I have not posted in quite a while, so you may not know me. I do come read now and then to see how people are doing. I am glad to see many hanging in there, and am also saddened about those who have passed on. It seems it is so variable how the progression goes. I hope Andy and others have the good fortune of progressing as slowly as possible.

Sincerely, Holly

 

[L4dybugg]

Holly,

So sorry about your dad. It is so heartbreaking to hear of anyone having to go through this.

It has not yet been confirmed if it is Bulbar onset. I did ask the Therapist if it could be, and she said it very well could be, and that he needed to get to an ALS center as soon as possible. She even noticed the way he was walking, when we were walking down the hall with her, as she was going over his diet. She made a comment about it. We have not yet talked to his neuro since the swallowing test was done. I'm going to call them Monday.

Andy's symptoms first started in his hands, then went to his arms, then his neck, it stayed like that for several years. Then it went to his legs. (all of that slowly progressing over time) And now it is his swallowing & choking.

I keep talking to Andy about making the changes with his diet, without being pushy about it, he is beginning to come around. We do have a good blender, so that will come in handy. I have also talked to him about the peg, that the drs will be bringing that up to him. He did say if it comes to that, he wants it in his stomach, and not through the nose.

Lori

 

[L4dybugg]

Sorry peg is in the stomach, you can tell I'm tired.

Have a good night everyone.

 

[brooksea]

Lori,

Where is the nearest ALS Clinic for y'all? This is too sad. The MDA will pay for an exam if insurance won't.

Please contact the ALS Clinic if things get more drawn out.

 

[L4dybugg]

The nearest is:

MDA/ALS Center at Vanderbilt University Medical Center

Jane Howard, M.D., Codirector
1301 22nd Avenue, South #3603
Nashville, TN 37212

He is to see: Dr. Peter D. Donofrio, M.D., Codirector

This is I'm guessing, about a 41/2 to 5 hr. drive for us. And no, it is not on our insurance plan. It's out of network. But we talked to our insurance co, and they said they would give us a better rate since it is the only one near us.

Just can't get the Neuro on the ball to make the appointment. I'm afraid something might happen to him before I can get him there. Because of his swallowing and choking, it is progressing fast.

I thought before we can go through the MDA, does'nt he have to be diagnosed first? He has not been diagnosed yet.

Lori

 

[rose]

CJ, I brought the MDA up as an avenue earlier, but was not sure if they would cover it if there is not an official diagnosis yet. I'd thought perhaps they would as it is an ALS clinic that they're attempting to be seen at, but BethU said they don't pay until after the diagnosed. I honestly don't know.

Maybe if they contacted the local MDA, explained the situation and asked what they could suggest as the next approach. I think some sort of advocate to get the ball rolling is what is needed more than anything. Even if the MDA can't offer financial help until after the diagnosed, getting him an appointment to be seen could be something this organization has clout with.

The other thing about the MDA is they will only give out so much (is it $2,000?) so keeping that lump sum intact could be a good thing to have for a large purchase in the future.

Lori, if he has a 401K, you can also make a hardship withdrawal from it for uninsured medical expenses. The hardship withdrawal would be done after the fact, so it would be after the bill from clinic arrives as you'd have to show documentation.

If his pathology slide of muscle biopsy was sent to NYC , maybe see if you can track down who physically has it in their possession, and get that sent back to you. If you already had an appointment in Nashville, then it would make sense to have in fedexed to them instead - but you don't....

 

[L4dybugg]

Ok. I'm going to call Monday both places and see when they can get him in. I'm tired of waiting around on them.