I am getting worried...

[mike b]

Hi,

Lynn has PBP and was diagnosed in June 2008. She became symptomatic in May 2007. She had her PEG inserted 11 months ago and has been very stable and strong until this week. Yesterday she told me her ankles were getting a bit wobbly, her arms and shoulders were getting weaker, and she was feeling more tired. She has gradually lost weight in the past few weeks and is now rather skinny and a bit bony. She constantly coughs to dislodge the mucous that builds up in her throat. Her ability to cough it out is getting weaker and more labored. Today I was home from work because of Veterans' Day and she complained of nausea. We were outside enjoying the lovely day when she had to vomit. This was tough to take. She said she felt better and we shrugged it off and continued on. We had dinner and she again complained about nausea. She just vomited again. She says it is a "bug". I wonder. She doesn't have a fever to speak of. She has not been vaccinated against the H1N1 since there aren't enough doses to go around her in NM. She says she definitely does not want to end up in the hospital. She doesn't want a trach nor does she want a CPAP or BIPAP. She wants to spend her last days at home with hospice care.

So here's my question: I don't know how the disease ultimately progresses but I do have a sense she is reaching the end in the near future. Is the nausea a normal stage of PDP progression? If she continues to not be able to keep food down, I don't see much choice but hospitalization and giving her IVs to keep her hydrated. I understand the final stages of PBP are extremely unpleasant. I guess I'd like to hear from others who have been down this road for your advice and suggestions. I don't really know what to do - just that her progression seems to have speeded up. My main concern is to provide comfort and support.


Mike

[Al]

Hi Mike. I haven't been down that road yet but others here have. Hope they see your post and can offer advice. Have you called hospice yet?

AL.

[mike b]

Not yet. How much time does it take to line this up?

[asantiago]

I'm not real clear on the difference between PBP and Bulbar ALS, but my mom had Bulbar onset ALS and got the stomach flu when she had it. Other than the course of that bug, she never experienced any nausea. I would say it is very possible she had just contracted a bug of some sort.

It was very scary when she got it because we feared she would vomit and choke but she never actually threw up, I think she probably lacked the muscular capacity to throw up but I don't really know. We are certain she had a bug because our whole family had it before she got it despite our best efforts to stay away from her.

Does she have a suction machine? That would really really help her with the mucous she coughs up and she should also get some meds to assist with that. There are medications that will both diminish and thin the secretions.

Additionally, does she understand the function of the bipap? Wearing it for even short periods will help her feel less tired. I recommend making a list of all her troublesome sypmtoms and reviewing it her doctor. There are likely many little things that will help keep her more comfortable

[sesl]

Mike, I don't want to ask anything obvious, but has she had any changes in her medications? My mother felt nauseous last night, but she had her meds changed in the past few days, we at this point we are putting her nausea down to that.

Otherwise, yes it could be a bug. It could also be dehydration or even salmonella poisoning.

I'm sorry she's not doing well at this point. It is probably a good idea to get some advice from alternative sources such as a hospice.

Good luck figuring it out.

sesl

[mike b]

She continued to feel nauseous yesterday so we went to the ER. They prescribed an anti-nausea medicine which worked wonderfully. She got it IV and then we got the pills today. So all is well for now. Apparently she is experiencing some serious acid reflux that is reacting with the mucous in her throat and causing the vomiting. Thanks for everyone's concern.

[Anastasia]

Hope things are a bit better Mike and Lynn.
No wonder you have been concerned. I dont have much experience yet, but would have gone to the same conclusion as you saw what was happening.
Take care, Anastasia.