Worried about Steve

[scaredwifetx]

Oh and he actually gained a few pounds. Mike does a very good job at making the shakes high calorie.

 

[pittsburghgal]

I find the same thing when we go to the ALS clinic. We just went 2 weeks ago and everyone is very upbeat and positive and I think this is what Frank wants to hear, so maybe it is good. But for me, I would rather hear the truth. His doctor said that he was about the same since his last visit 3 months ago but I see him everyday and know that just isn't true, as much as I wish it was.

I also urge you to get the PEG as soon as possible even if you don't need to use it right away.

Sharon

 

[soonerwife]

My PALS respiratory has declined at about 10% a month since diagnosis. They didn't give me a percentage from the last pft although the one three months earlier was lower than Steves. He doesn't use the Trilogy and says he has no problem breathing. I asked his neurologist about how that could be. He said that because his lungs are healthy, they are functioning well even though the muscles aren't. Seems weird but something is making him not feel labored to breath with a very low #.

PALS had feeding tube placed 3 weeks ago. He didn't have problems with surgery at all although we took his Trilogy in case they needed to use it during the procedure or in recovery but they didn't.

I hope Steve will just go ahead and get his soon though. Why wait if he plans to get it, right? Especially if his eating is compromised.

HUGS, Deb!

 

[ehd42]

Hi Soonerwife
I think it's wonderful that your husband does not feel short of breath in spite of his decrease in pulmonary function values. However, should his FVC fall below 50% of predicted, all the ALS research on this subject recommends that PALS begin using noninvasive ventilation by that point. Those that have done this seem to have a significantly longer survival time as well as an improved quality of life. PALS don't suffer from lung disease as a result of ALS but once their diaphragm becomes very weak they will begin to develop shortness of breath unless they begin using noninvasive ventilation because they will not be able to take a deep enough breath to breathe normally.
Therefore, I would suggest asking your neurologist give you your husband's exact FVC %. Once it gets close to 50% of predicted I would then strongly encourage him use his trilogy regularly, beginning with nightly use.

Best wishes

Eliot

 

[vltsra]

Deb, just wanted to reach out and tell you that this disease is so hard and so unfair on all counts. I think every CALS here is doing the best they can in the face of unbelievable adversity and sorrow. I understand too how difficult it must be psychologically for a PALS to admit they need breathing support more often, a PEG, or other support aids. I'm glad he gained a few lbs and hopefully he will feel better if he uses the trilogy more. Just remember you are doing your best for him.

V

 

[soonerwife]

Eliot, his FVC is below 50% and he has the Trilogy. I just can't get him to use it... I have encouraged him to as has the respiratory therapist. He will use it for an hour here and there but not on a regular basis and he can't get used to sleeping with it. I am sure at some point he will require it, until then it is up to him. He has been given all the information and that's the best we can do at this point. Thanks for the info! You can lead them to water but you can't make them drink, lol!

 

[scaredwifetx]

Thanks everyone for the support. Steve has no problem using the trilogy now that the settings are correct. He actually will not sleep without it now that he is used to it.

Soonerwife, I wish you could get your PAL to use the trilogy.
If he could understand it will help him. Look at what his body has done with the peg. I wish Steve would realize the oeg will help him.

Steves FVC is low and his MIP is also under 50 so that's most likely why he is struggling more Soonerwife.

Like so many have said, we do our best. I am dreading whats to come but knowing what to try and do makes it easier. I am so glad we all have each other here. Its about the only place I feel normal anymore.

 

[ehd42]

Dear scaredwifetx,

Your husband’s reluctance to use his trilogy may be due to denial or depression. It may also be related to the use of an uncomfortable mask. These issues need to be explored in order to determine the root cause of his refusal to use his trilogy. Discussion, psychological counseling and/or medication may help deal with this issue. He definitely needs to use his trilogy every night. The main issue with the use of noninvasive ventilation is that it allows the diaphragm to rest and recuperate. There is good evidence that your husband survival time will be increased because a rested diaphragm will deteriorate at a slower rate. It is no wonder that your husband does not feel short of breath with an FVC 47% while breathing at rest, since he has enough vital capacity to still allow him to breathe in an adequate volume of air while sitting at rest. I think it would be a good idea to buy an oximeter (less than $50 on line) to measure your husband’s oxygen saturation level. If it remains at or above 95% and does not feel short of breath then he is getting enough air. Nevertheless, his diaphragm must be working awfully hard to accomplish this, and he would be still benefit from using his trilogy as much as he can tolerate during the day. If his oxygen saturation level is less than 95, then he absolutely needs to use his trilogy regularly during the day in order to raise the level to or above 95% if he wishes to maximize his survival time.
I think it would be a good idea to have a long conversation with Steve regarding survival time and the use of his trilogy and find out his reasons for not using it. If he is in denial or depressed than he needs treatment for that. If it's due to discomfort from the mask, then ask the respiratory therapist to bring in a number of samples until Steve can find a mask that is tolerated.
It seems that in ALS all things are related. As the FVC falls below 50%, the diaphragm begins to move up in the chest and as a consequence so will the stomach, which lies just beneath the diaphragm. When this happens, the stomach may move so high that it moves into the rib cage, which will make it very difficult or impossible to place a PEG. Therefore, if Steve wants a PEG, this is the time to do it. Unnecessary delays risk complications or limit your options.

Best wishes

Eliot

 

[scaredwifetx]

Hi Elliot, thanks for the response but think one aspect was misunderstood by you. Steve doesnt have a problem using his trilogy. As a matter of fact, he uses it every night and sometimes takes a nap and uses it. He has neen using it for several months.

The peg is the issue and my concern was getting it before his FVC got any worse. It's already at 47%.
I also find it interesting that you mentioned the diaphram and the stomach. We have noticed that his stomach is now where his weight is. He is and has always been thin with absolutely no belly. Now he is thin woth a bukdging belly.

I am going to have a long talk with him this weekend and repeat everything said here. I am going to make sure we set up an appointment for a peg. This time I am going. The last time the doctor told him he wasn't ready. I am not sure the doctor knew where is FVC was. If this doctor still feels he doesnt need it, I will find another.

 

[scaredwifetx]

Sorry. Using phone again. Thin with a buldging belly. Correction.

 

[affected]

If there is any FTD involvement of course they cannot follow cause and effect logic, let alone what-if scenarios.

I think scared and sooner have very easily confused usernames when they both get woven through a single thread lololol

 

[scaredwifetx]

I wanted to thank everyone who posted on this thread. I used everyones posts and put together the logic for Steve.

I am to report that we are setting up an appointment on Monday for a peg consult and going to the doctors for his blood pressure. His blood pressure was at 134 over 96.

I called a family meeting between Steve, Mike and I. He listened to me and agreed. Happywifetx not scaredwifetx today! Bless you all!

 

[Nikki J]

Good job! And good for Steve for going for a tube! PEG or RIG?

He should be proud for taking control of his health and you should be proud of facilitating that. We are proud of all of you- he is lucky too to have Mike on his team

 

[scaredwifetx]

Thank you Nikki. Steve and Mike both know that I invest a lot of time making sure we do what we can to help him. I told Steve that its my job to make sure we do what we can to insure his quality of life. He knows that and trusts me. Mike is great at taking care of his day to day needs as I am not as good at that. Steve has also come to trust everyone on here. He cant be part of the forum because of dealing with the reality of it all but he does respect the advice. He does know that everyone here wants to help and in most cases know more than the medical community. I am so thankful I found this forum right after his diagnosis.

He even knows who a lot of you are by name. He relly appreciates the support. Thank you!

 

[affected]

Wow that is an amazing achievement, I hope the consult goes well and you get that extra quality of life for him, and ease of dealing with symptoms.

Tell Steve that Tillie sends a hug