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Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
:( MY DH hasn't been himself the last few day...lots of coughing, more weakness than normal and general malaise.

Since my husband is slow progression, I get very use to the level he is at, and it almost seems like he is "normal", as in his changes are so slow I don't always notice them and have plenty of time to prepare. My heart always hurts for those of you facing this rapidly--I cannot imagine the extra emotional toll it takes on you. So when my husband has a decline or a bad week, I get scared easily because I am not use to it.

the last couple of weeks he has been coughing more, but nothing too hard on him. but starting on Tues. he was really coughing crazy. Last night it went on for 2-3 hours. He is weaker than normal and it could be from the exhaustion of coughing as we all know that takes its toll on a pals. he hasn't been eating much either. everything makes him cough. He was also complaining last night of being hot. he did not feel feverish, so I thought it was his BP was raised from the coughing and choking. today, he barely ate breakfast or lunch and just had a general weak and ill air to him. usually he is in good spirits and enjoys getting up and starting his day. He actually told me he just didn't feel good. Now that is a huge statement coming from him--Mr. strong and silent. He asked to lay down at 12 and then again at 4:30. totally out of character. usually only one nap and not because he is deathly tired. I had trouble transferring him to bed because he was so tired and weak.

I went out a bought a ear thermometer and a oximeter today while he slept. he has not been running a temp any of the times I checked. after his first nap his O2 was 97 and his Heart rate was 95. when I laid him down for the next nap his O2 was 93 and his HR was 105. both times he was laying down.

probably nothing but I get scared...
 
Oh Barbie I am sorry. It sounds like he is sick even without a fever. Sounds like you should call and get him seen somehow?
 
I hope he starts feeling better. I am thinking of you.
Trina
 
Thoughts and prayers are with you both
 
>probably nothing but I get scared...

do you have an ALS pulmo? otherwise a pcp? ime for a quick checkup?
 
I told him we would watch and see how he feels on Monday. we do not have a pulmo but we do have a new doc who makes house calls. Ate dinner with no coughing! just didn't eat much. we will see how the rest of the evening goes...

With my hubby, he is so thin that I worry any virus or cold could kill him. luckily he has overall good health, but really his thinness is the thing that worries me most. He asked me to lay with him during his nap today, and I tried to snuggle up to his back and spoon him but he is all bony and frail so it is difficult to get close. my poor baby.
 
Barbie, sorry to hear your DH is not feeling well. I understand how scary it can be for both of you given he doesn't have a feeding tube or use a bipap. Thinking of you....
 
That increase in coughing and decrease in stamina, and loss of appetite adds up to a big red flag. The numbers are OK but still something is wrong. He needs a chest x-ray ASAP. ALS and respiratory changes can go south quickly. It is easy to think it is probably nothing and we all dance with that idea, but wouldn't it be better to know?
 
Prayers for you and family Barbie.

Janie
 
Barbie, I am sorry that hubby is going through a difficult time. He is showing by his sats and heart rate that he is working harder. Most people that have a fever actually complain about being cold, not hot. I would be interested in what his heart rate and respiratory rate is as well. I realize that you are worried that he is so thin but he needs fluids more than anything when unwell. Would he tolerate gatorade as that would give him calories as well as fluids. I know how frightening coughing can be with our PALS, and they just don't have the oomph to get anything up. A mister near him might help.
You will both be in my prayers.
Paulette
 
Thinking of you, Barbie. Praying you both are having a better night. That coughing can really exhaust a PALS....
 
>I know how frightening coughing can be with our PALS, and they just don't have the oomph to get anything up. A mister near him might help

that's what they had me use + a nebulizer w/ Albuterol (yuck) ...
 
Hell Barbie, it is a worry even without a temperature.

I hope you can get him checked by a doctor just to be sure if he needs any tests/chest xrays etc. I know that you normally have a fairly steady time just slowly downwards, and any sudden change must be strange and unexpected.

Please let us know as you can, some good suggestions from people here to help manage him, lots of fluids.
 
I hesitate to post this but feel I should. A few years ago my son had a similar set of issues as your husband and the doctors swore it couldnt be pneumonia because he didnt have a fever. But when he was breathing his nostrils flared and his chest was rapidly rising and falling. His oxygen sats would come up with a nebulizer treatment but drop back down to 91/92. I wouldnt leave the emergency room until they did a chest xray. He had atypical double pneumonia. Atypical because he didnt run a fever. He felt crappy. Barbie, if you dont like how he is presenting, get him in for a chest xray to be sure. You know him best!
 
Oh Barbie, the progression of ALS is so difficult. Our doctor was able to find someone to come to the house to do x-rays for Joe. Is he coughing up any phlegm? If so is it dis colored ? I had to watch that carefully. Call his doctor he might have an infection. Holding your hand as you ride on the emotional roller coaster.

Debbie
 
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