Dear friends,

My mom passed away peacefully on the afternoon of october 8th. I have been in this forum for only a short while but I appreciate all the support and experience many of you shared.

My mom was only 71 years, she could have lived longer. She was not alone and she was surrounded by all of us as she took her last breath. I am… Read more

Hi all,

I am looking to see if anybody has the following accompanying conditions that my mom has been doing through. I understand that I have to check with her doctor for medical advice but I am only looking to gain insights from you experience.

My mom has never developed a fever in any of her flare ups before but in this week she has had… Read more

@reshma
Dear Reshma

I find a lot of similarity between our moms. She says the same thing about milk too.

Steroids doesn’t cure any condition, it only gives them some relief. My mom and I resisted taking steroids until she could hold out. Then we agreed to 5 mg per day, it was then increased to 10 mg if we needed to travel or do something… Read more

Reshma,

When my mother was diagnosed in 2015, she was 125 lbs, now she is 95 lbs. She eats very little. She says she can’t taste or smell anything, sweet is the only taste she has retained. Thanks to heavy dose of steroids and cellcept, it leaves them with all these side effects.

I agree with Charlene, I give her ensure also, it gives them… Read more

Charlene and Susan

Thank you for your response. Charlene, I appreciate all the extra information you have provided. I will call the oxygen company and have them come. Due to Covid, they haven’t shown up and it has been 4 months. I think I will also call my township and put my mom in the emergency list – I didn’t know these options existed.… Read more

Susan,

Thank you for your kind words. I appreciate your feedback and I was thinking the same. I am sending some prayers and positive thoughts your way too.

 

I have a question on oxygen concentrator. My mom is on oxygen 24/7 and is dependent on this machine now. My questions are:

• Does this like other appliances get overheated? Should we be turning it off for sometime?
• Do most of you have a back up generator in the house in case of power failure?
• My mom’s POC hardly helps. Are all POCs on…

Read more

Thank you all for your responses. I understand your shock. My mother is set up a bit differently than most people who live here in America. My mother lives with our family in the same house. I am her caregiver. After my dad passed away, she moved in with us. I take care of all her needs and she doesn’t want any responsibility. I take her to… Read more

Thank you Mark. It is devastating for sure. I will try to find out about the option of a social worker. Are they associated with hospitals or with doctor’s office too? I am sorry, I am quite ignorant in this whole process.

My mother is 71 years old. She was diagnosed with IPF in 2015. She is taking 2g of Cellcept and 20 mg of prednisone. She is on 4L of supplemental oxygen 24/7. She is able to get off the bed, use the bathroom, shower and do things on her own as of now. I was on a call with her pulmonologist this week and he told me that I have start thinking… Read more

I am thankful for finding this site. I have already found many answers to my questions. My mom (71 years) was diagnosed in 2015 with PF. She had a the worst breathlessness back then and was put on 40 mg of prednisone for a month. She basically got so much better after that, we were given supplementary oxygen in 2016 to use when needed. 2017,… Read more