It Just Doesn't Get Better, Does It!

[DeansWife]

We have the nebulizer, suction machine and cough assist for Dean and he just doesn't seem to be getting any better. I'm so torn on what to do. I called the pulmonologist for a appointment, waiting to hear back. I'm probably over reacting but he's coughing all night and all day. A good friend gave me a stethoscope and showed me how to use it. I'm hearing some rattling on the left side. Pneumonia scares the he** out of me. He's not running fever so that's a good thing, I think. His b/p was a little on the high side this a.m. but could be from all the coughing. He's sleeping now, in his recliner. He seems to be doing a whole lot more of that as well (sleeping). I'm so concerned.

 

[momap53]

I've had a rough month with coughing too and it really does wear you out. It can be frightening.

We've had such a warm winter that the pollen has really been bad this year. Mine was related to post nasal drip and seems to be getting a bit better. I recall that you had posted that Dean has been having a problem with this too. I had been using Chlorampheneramine maleate (Chlortrimaton), Loratadine and or Musinex. Protracted coughing could definately raise his BP.

Do you notice any difference in the lung sounds before and after he uses the cough assist? I hope you get a callback from the pulmonologist soon.

 

[vlcare]

My husband developed an upper respiratory infection about a month ago. The coughing was terrifying. Our call to the pulmonologist (via his medical assistant) went unanswered. After 4 hours we called the ALS Clinic--they told us they had no advice to give. Finally, I located a family practice nearby. They told us to come right in (Friday afternoon). The doctor understood our concerns about the infection morphing into pneumonia. He arranged for my husband to have a heavy duty injection of antibiotic and issued a prescription for a 10-day course of a different antibiotic. My husband never developed pneumonia. Eventually the coughing subsided and disappeared. Psychologically that doctor's intervention was critically important.

FYI: The pulmonolgist's office never did return our call. The following week our neurologist referred us to a new pulmonologist/critical care physician. We met with him and he told us to call him no matter how trivial a question might seem.

Coughing does not necessarily portend a devastating outcome. Sometimes the non "expert" doctor can be the first line of defense. But failure to return a patient's call timely is indefensible, no matter what.

Good luck.
VL

 

[rachelg]

I dont know if this will help but I will tell you what happened with us. My Mark went through a stage of coughing that was beyond belief. It was constant. It was distressing and awful. Each day he was exhausted from the constant cycle of coughing, suctioning, nebulising, cough assist - it got to the point where the sheer exhaustion made him want to give up. All he needed was a break from the coughing.

We discussed this with a specialist ALS nurse and this is what we did. He was prescribed Codeine Linctus - prescription form (not the simple linctus available over the counter).

Only with the promise on our part of nebulise 3 x a day and cough assist 3 x a day was he allowed to have this medecine. It is specifically designed to supress a cough.

We were told that coughing is important for lung protection, but this was to give Mark a break, a rest from the relentless coughing. It worked really really well - kind of broke the dreadful cycle and gave Mark some relief. We used it for 7 days and that seemed enough time for him to get rest from it. It may be worth mentioning this to your GP.

One other thing - we found that nebulising with the prescribed saline solution was irritating Marks cough so he switched to nebulising with vials of water used for injections. Something to do with the saltiness of the saline solution.

Others may say that this is defo not the thing to do but it was the only way for Mark to get relief from the constant coughing.

 

[DeansWife]

Got a call back from the pulmonologists nurse. I told her what was happening and she talked to the doc. He recommended taking him to the ER since they can go ahead and get x-rays etc done on the spot. So, guess we're off to the ER. Not looking forward to having to deal with people who don't understand ALS and Bulbar Palsy!

 

[momap53]

Glad you got the callback. The X-ray will help. I know you dread the ER, we all do. Just put on your educator/advocate hat and stand up for your dear PALS and keep the Pulmonary doc and Clinic numbers at hand if you need back up. We'll keep you guys in our prayers.

 

[rachelg]

Hope all goes well, just like Deb said be their educator - you know your man better than anyone. Will be thinking of you.

 

[DeansWife]

Back from the ER. God was surely looking down on us today. The ER doc was all to familiar with ALS/Bulbar Palsy - he father died 6 years ago from it! Dean's lungs where clear, b/p was normal, no temp and blood ox level was 97. Diagnosed with bronchitis but we're on antibiotics already so hopefully will begin to clear up. It was so nice not having to explain everything! They gave me a laxative for him to take for the constipation as well. Will do it tomorrow morning so he can hopefully sleep tonight. Thank you all for being here. Don't know what I'd do without this forum. Especially when I'm at my wits end and don't know where to turn. Hugs, Janice

 

[momap53]

Oh, Janice! I'm so happy that the ER visit went well and that it's only bronchitis.

 

[panguinjen]

Janice,
This may go to mod land, I'm sorrry. I'm so glad you were able to gt Dean seen and with someone who had knowledge of ALS. I've been thinking about you and wondering how things were going! Rog is tired a lot, too. He's sleeping now as I sit on the verandah in San Diego.

Hope Dean feels better soon!

Jen

 

[Barbie]

Janice--What good luck with the ER visit. Hope everything clears up quickly.

 

[pmbenb83]

I'm so relieved for you to finally get someone who knows exactly what you're both going through and what to do for Dean. I'm very glad it was not pneumonia. Hoping you both have a peaceful night.

 

[HelenL]

So glad that your ER trip was uneventful, and that he's resting... hope he feels better soon, so that you can sleep better yourself!

 

[cervus]

What a relief, Janice. How reassuring it is when you actually end up with a doctor that is familiar with ALS. Whew! I hope you both get some rest tonight. Yasmin

 

[DeansWife]

Thanks again everyone. This certainly isn't a easy road. I sometimes think I'm paranoid about every cough, sound etc. that Dean makes. Sure wish I could relax and enjoy the days we have. Maybe after our upcoming move to Montgomery is behind us, I'll be able to relax some. I'll be close to my son and living with my daughter. Hoping that will give me a little relief. Ya'll are the best! Hugs, Janice