[Reshma Joshi]

Thank you dear @reglois I will definitely decrease the amount of salt in my mom’s meal.

Stay safe and take care

Reshma

[Reshma Joshi]

Hello!

My mom now has a complete loss of appetite since few weeks. She says she feels full all the time and doesn’t want to eat. She feels bloated all the time and whenever she eats she has pain in the upper stomach. We have talked to her doctor and they recommended medicine for Gastric twice a day but it doesn’t seem to help her. Can anyone please recommend anything? ?

Best regards

Reshma

 

[Reshma Joshi]

Hi @susan

Thank you for the info.

Take care. Sending you a warm hug.

Reshma

[Reshma Joshi]

Hello!

My mom has swollen feet since few days. Is it a normal side effects from steroids or is there anything to worry about? Does anyone have such experience with swelling?

Best regards

Reshma

[Reshma Joshi]

Hi Susan

It’s nice to hear that your daughter is visiting you frequently. It is very very important to have good times with your family. After all family is everything ❤️?

Warm regards always,

Reshma

[Reshma Joshi]

Hi @charlene
Good to know about your experience with humidifier and vicks vapor rub. I’ll try to contact my mom’s physician about humidifier and whether it may help or not. Thank you.

Warm regards,

Reshma

[Reshma Joshi]

Hi @susan

Thank you for your reply. It’s getting harder for my mom because of too much cough esp during night and morning time. Oxygen concentrator doesn’t help her anymore so we have 3 big oxygen cylinders and 2 small. She needs 6-7 Lpm while sitting and up to 12-15 Lpm when she goes to bathroom. She’s not been able to brush her teeth lately because she can’t take off her oxygen mask so we are giving her mouthwash . She’s using high concentration mask all the time which has limited her to take care of her body.

It’s very very hard for us to see our mother suffering like this ??

[Reshma Joshi]

Hello!

I have a question does humidifier help to reduce cough to some extent? My mom’s coughing has increased a lot lately so someone suggested me to put a humidifier in her room, may be this will decrease some coughs. Can anyone suggest me if it’s a good idea?

Best regards

Reshma Joshi

[Reshma Joshi]

Hello @reglois

Nice to hear from you and happy that you’re daughter is coming to visit you. I have came to Nepal last week for my mother. I’m taking full care of my mother which I couldn’t do before. My sister who is a caregiver can relax a bit now since I’m here for the family. Have a good time with your daughter and enjoy your time.

Warm wishes

Reshma

[Reshma Joshi]

Hello Susan and Charlene
My mom got hospitalized again today. This is the second time she got hospitalized in 2 months. She was not getting enough oxygen since yesterday so we had to take her to hospital. Fingers crossed ?

Susan, you wrote about doubling up the concentrator. What does that mean? How does it work? We’re having a hard time finding a concentrator which has more than 5LPM. The provider was saying they haven’t imported such high level concentrators yet in Nepal. So this doubling up concentrators might be an option for us. Also if anyone has such experience please share ?

Reshma

[Reshma Joshi]

Hi @reglois and charlene
Thank you both for sharing your experience. About the oxygen concentrator, we’re only using stationery home concentrator which has the highest level of 5LPM. So I was wondering if there are other better stationery concentrator with higher level (higher than 5LPM) ? Also she’s wearing an oxygen mask these days instead of nasal cannula because a nurse had recommended to do so for a better effect. Is it safe or okay to wear mask all the time?

[Reshma Joshi]

Hello everyone!

My mother has been using O2 supplement 24/7 from last 8 months and then we bought a Oxygen concentrator called Oxy-Med, Model MAOXY 05 and we have 2 small cylinders for back up. Previously the amount of oxygen flow was enough from the concentrator through nasal cannula but these days (after almost 8 months of using) she’s not getting enough flow of oxygen from the concentrator even with the highest level which is 5L. We have to put at the highest level even while she’s sitting but her O2 is hardly above 90 which is equivalent to 5L-6L in the cylinder (the highest on the cylinder is 15L). Even with the highest level on the concentrator now through oxygen mask, my mom’s O2 fluctuates alot. So my questions are:

1. What is the highest level in oxygen concentrator?

2. Should we change the oxygen concentrator with a better quality one or it’s more or less same with all oxygen concentrators? My mom’s doctor had suggested to purchase an American one which is apparently a better quality. Have anyone of you have used this american one?  Can you guys suggest which is a good quality oxygen concentrator?

3. Is anyone using oxygen mask?

We’re very confused so please feel free to suggest anything ?

Best regards,

Reshma

[Reshma Joshi]

Hello @Randy and @reglois

Thank you for sharing your every day struggle with low oxygen level and heart racing problem. My mom has IPF and she has this heart racing like “asthma” quite often. Sometimes even while seating her heart is pounding and her breathing becomes very heavy like having asthma. Do you guys have any solution or recommendation while having such heart racing? Any tricks or hacks?

Have a good day both of you 🙂

 

Best wishes,

Reshma Joshi

[Reshma Joshi]

Okay got it. Thank you Susan ❤️

[Reshma Joshi]

Hi Susan

The things you suggested are household things which we can find easily around us. We’ll definitely try it for our mom. Thank you so much for the great tips ?

Warm regards,

Reshma

 

[Reshma Joshi]

Hi @steve-dragoo

I will check what we can do. Thank you for your advice and concern ?

 

Warm wishes,

Reshma

[Reshma Joshi]

Hi Steve

Thank you so much for your advices and for all the information. My mom lives in Nepal and they have very limited resources and medications for the IPF patients. It’s not like US or Canada where they have pulmonary rehabs and lot of options for medications. My mom has her follow up in a week so I’ll them to talk about the medicine that you have suggested.

Once again thank you ?

 

Take care and stay healthy.

Reshma

[Reshma Joshi]

Hello Wendy,
I appreciate all the advices that I get from this forum. We try everything possible to help our mom. So thank you very much for your advice ?

Warm regards,

Reshma

[Reshma Joshi]

Hello everyone!
Thank you so much for your suggestions. It seems like the wedge pillow is very helpful but sadly they don’t have such pillows in Nepal. If we didn’t find such pillow I’ll try to courier it from here (Sweden).

Also have you guys experienced making a different kind of sound while sleeping? My mom recently is making such sounds and we’re thinking of recording it and show it to her physician.

Once again thank you so much for writing ?

 

Warn regards,

Reshma

[Reshma Joshi]

Hi @susan

Thank you for your reply ❤️ Hope my mom can go home soon.

Warm regards,

Reshma

[Reshma Joshi]

Hello everyone!

Hope everyone is doing well.

My mom got hospitalized yesterday. She was having problem with her breathing and her heart rate was very fast. We switched to oxygen cylinder with maximum level that is 11 but still her o2 was hardly 90. Then we decided to take her to the hospital. They put her in ICU for a whole night and shifted her to general ward today morning.

Her doctor said she has around 50-60% lung damage and gave us the same timeline as before. Can anyone please explain about this percentage of lung damage? Also I have read that a man can live to certain amount of years by having just one lung. How much is it true?

Any information can be very valuable to us ?

Warm regards,

Reshma

[Reshma Joshi]

Hi @reglois @mark-koziol

Thank you for your reply. I’ll check into with her physician as well.

Best regards,

Reshma

[Reshma Joshi]

Thank you thank you so much @charlene. You’re like an angel for us ❤️❤️

Lots of love,

Reshma

[Reshma Joshi]

Hi everyone!

One quick question.. Can a patient with IPF have a coffee??

Regards,

Reshma