Recent content by vltsra

Robin, sounds like you had a great week. Hope your time at the cabin was a good break for you. My PALS told me this week that he really doesn't see the point of going to all of these doctor visits. Given that his progression is slow, I tend to agree. He has all of his equipment needs met...

Love the tequila shot and Queen. It's a blessing that he was able to go on his own terms, and a blessing for you that you were able to support him. Wishing you comfort and serenity going forward. V

Wow! I'm impressed that you were able to do this trip. Good for you both!

Jessie, I read your post with a combination of sadness and humility. You have been traveling this road without a CALS which must be tremendously difficult. I have appreciated your courage and grace. Wishing you peace and love. V

Thanks all for the suggestions. We do have 2 machines; we also have 3 different settings but after trying them he just prefers the same setting (which makes it easier). I talked with him about his position in bed and he tells me he just likes having his head elevated. He isn't really...

Steve, so glad you were able to do this trip! I always look forward to your posts about your adventures. Yellowstone was the last place we were able to travel together. V

Thx Laurie, I will send a note to his pulmonologist, if I don't hear back will be in touch. Could be he prefers sitting up.

Thanks Jim. He is on bipap 24/7. We've had face to face meetings with the pulmonologist and RT and they haven't made any changes to his settings. I will ask them though. He tells me he is only comfortable sitting up.

Lots of rough nights lately, I suppose I'll have to get used to it... Jim, do you think the alternating air mattress would work for someone who sleeps in a sitting position? My PALS can't lie flat. I bought an overlay but it is problematic because it doesn't fit over the mattress firmly and...

Checking in after a rough night. About 1 am I was awakened by the BiPap alarm. When I got up to check it, the electricity in the bedroom had gone out. It kept cycling on and off; after checking the breaker, unplugging everything in the room, plugging the BiPap into a different outlet with...

Hi HReal, my husband started on BiPap more than 2 years ago. He had the same symptoms as your dad; lost his appetite, shortness of breath and unable to sleep. Before we got him on the BiPap he actually started to show symptoms of CO2 buildup. Once he started BiPap at night, he was so much...

Glad to hear the feeding tube is working out for you, Robin. We do use our own food along with Real Food Blends. Good for you to do a getaway. I was talking to my PALS last night and not sure we would be able to do anything like that any longer. While he was still able, we did a number of...

I will echo Jim's post. We started out with a twice daily regimen of cough assist. Now I find it is necessary more often. It keeps my PALS lungs clear.

Robin, I'm so glad your husband is doing well on the feeding tube. It makes it easier for us although he still wants to eat by mouth. My PALS really hasn't seemed to lose much weight aside from muscle wasting. Glad you had a good week. V

Mary, I'm sorry you missed your mother's birthday. It is OK if you cry, I certainly do it enough. It does help to get out of the house. I try and take my PALS somewhere every Thursday if possible. Even though sometimes he doesn't feel like it and sometimes I don't, it helps both of us. RMT...

Brucker, when my PALS started having breathing issues he lost his appetite and dropped about 20 lbs very quickly. Once he went on bipap at night he felt better and with high calorie food he gained back most of the weight. Now we are mainly feeding through the feeding tube. Mornings we make a...