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

Stay safe and take care

Reshma

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… Read more

Hi @susan

Thank you for the info.

Take care. Sending you a warm hug.

Reshma

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

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

<p style=”text-align: left;”>Hi @charlene</p>
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

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… Read more

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

Hello @susan

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

<p style=”text-align: left;”>Hello @susan, @charlene</p>
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… Read more

Hi @susan and @charlene
<p style=”text-align: left;”>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… Read more

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… Read more

Hello @Randy and @Susan

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… Read more

Okay got it. Thank you @susan ❤️

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

 

Hi @steve

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

 

Warm wishes,

Reshma

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… Read more

<p style=”text-align: left;”>Hello @wendy</p>
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

<p style=”text-align: left;”>Hello everyone!</p>
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… Read more

Hello!

Today we brought our mom home from hospital.She had a big flare up and high heartbeats few days ago so we had to take her to the hospital.

She has excessive cough while sleeping time. It takes her much longer time to sleep because of the cough. And also she makes some kind of noise while sleeping which she’s not aware of. I’m seeking… Read more

Hi @susan

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

Warm regards,

Reshma

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… Read more

Hi @susan and @mark

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

Best regards,

Reshma

Hi everyone!

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

Regards,

Reshma

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

Lots of love ❤️❤️🙏

Reshma

Dear @charlene!

I’ve done the best thing in my life by joining this forum. I’ll be eternally grateful to all of you 🙏🙏

My email address is rezzmajoshi@gmail.com

Thank you for being so kind. I’m very overwhelmed from all you guy’s support 🙏🙏🙏

Hi @susan!

Yes, we have oximeter and we use it many times a day. Thank you for your concern again.

Susan one thing I wanted your advice on is we’re planning to buy a treadmill for my mom. In Nepal it’s not a wise decision to go out for a walk since it’s very polluted and we’re scared if it will harm her more. Also there’s a risk of corona… Read more

Hi @susan

You’ve been so inspiring for us. We’re very grateful to you. I have read your suggestions very carefully and have forwarded to my sister also. We’ll be doing everything for our mother. We’ll track her exercise and walks everyday from today.

Will keep posting about her. Thank you for all the help 🙏

With love,

Reshma

Hi @susan and @charlene

Thank you both so much for showing support and care 🙏

Regarding daily exercise and walks, my mom barely can walk inside the apartment but we make her at least walk from one room to another. It’s very hard for her to climb stairs so we had stopped making her do that. So my concern here is if we should make her walk… Read more

Hi dear @charlene, @susan @sita

My mom’s CT scan and blood report came today and it’s not good. Doctor said my mom’s fibrosis is increasing rapidly, the report said so. He told my sister she has 1-2 yrs now and asked not to tell my mother about this. The doctor said we need to make her exercise and walk more.

She’s taking Emsolene 40 mg… Read more

Hi @charlene
<p style=”text-align: left;”>We do have a separate oxygen cylinder for such power cuts cases but last night my mom thought she would be okay just to go to the toilet so she didn’t put oxygen cylinder. Thank God she was okay as soon as she was given O2 .</p>
Yes, we follow the rules of taping down the steroids and will keep on… Read more

Hi @susan

I can understand you so well since I’m doing the same. Healthcare in Nepal is not good as US, Canada or Sweden and also this disease is not common there. Doctors never provide any information at all besides just prescribing medicine. We were so frustrated and felt helpless. Since I joined this Forum it has been very very helpful.… Read more

Hi @susan

Thank you so very much for such a prompt response. I’ll share these suggestions with my family ASAP. Thank you 🙏

Dear @charlene

I shared everything you said with my sister back in Nepal and she has bought similar to Ensure. Thank you so much for the info.

Yesterday night my mom woke up to go toilet and there was power cut for a while so she couldn’t use oxygen but it was so hard for her that she fell in the ground and my dad and my sister heard her… Read more

Hello dear @sita

I always feel so sad to hear about the pain that our loved ones are going through. I feel so helpless at most of the time.

I live in Sweden with my husband and my parents and younger sister lives in Nepal. Since you said you’re from India I can now relate many things between us. Doctors in Nepal are very unsupportive, they… Read more

Hi @sita

Thank you so much for your reply. Every responses people give are so important to us. We understand now that the weight loss is normal but as children we sometimes get very stressed out and keep reaching out to the people with similar disease. It’s always very helpful. My mom says she has some irritation when she drinks milk so now… Read more

Hi @Charlene!

Hope you’re doing good. It’s been a while since I’ve written to you.

My mom is as always taking her oxygen supplement 24/7 and yet some days are very hard for her. She can’t even move from one place to another because of a heavy breathing. And our other main concern is her weight. She has lost so much weight and she says as soon… Read more

Thank you everyone for sharing your oxygen supplement intakes. This has certainly clearify so many things we’re dealing with. These information will be so helpful for my Mom.

Take care everyone. Stay safe and happy 🙂

Warm regards,

Reshma

Hello @Bob!

Thank you so much for your response. We really appreciate any kind of advice or suggestion. They’re very helpful.  Since you have said about your oxygen situation, what do you do for the daily activities in such case? Do you just rest or you keep doing your things? My mom’s doctor said it’s very important to be physically active… Read more

Hi @Charlene!

Good to hear from you always. No worries thank you. Mark has replied me about this topic. You take care and stay safe 🙂

Warm regards, Reshma

Hello @Mark!

I’m always very grateful to you for your good advices. I didn’t know much about the steroids and also didn’t know that it should be gradually lower down to 0mg. Thank you so much for this information. I’ll surely ask the doctor about the steroids. We are very much keeping eye on my Mom.

Thank you so so much Mark 🙏 Stay safe… Read more

Hello @Charlene!

Hope you’re doing well. I have few questions about steroids. How long can a patient take a steroid? Is it safe to take steroids for 15 days? And in which cases steroids are given to the patient? My mom is feeling better with the chronic cough from few days but the doctor (we visited another doctor as an alternative)… Read more

Hello @Mark!

Hope you’re doing well. I have few questions about steroids. How long can a patient take a steroid? Is it safe to take steroids for 15 days? And in which cases steroids are given to the patient? My mom is feeling better with the chronic cough from few days but the doctor (we visited another doctor as an alternative)… Read more

Hi @charlene!

It’s always a good feeling talking to you and sharing my mom’s condition. We’ll continue to make her do some exercise along with some rest. I’ll keep you updated about her condition. Thank you for being there for us through this Forum 🙏

Take care and be safe from Corona ❤️

Lots of love, Reshma

Hello @Mark:

This is the drawback of living in developing countries like Nepal where there’s no such rehabilitation for the patients. Doctors here just prescribe the medicine and that’s it. We ourselves are doing research and watching YouTube videos for the good exercises for IPF patients. There’s a big difference in medical treatment… Read more

Hello @Charlene!

I know it’s very tough situation for my Mom and a tough decision for us to make about her exercise and all. Now we have decided to do like this, we see her condition during the day and if she’s fine we’ll make her to some activities and if she’s exhausted we’ll make her rest. Let’s see the progress in coming days and I’ll… Read more

Hello @Mark!
<p style=”text-align: left;”>Thank you so much for making me understand. I’ll ask her doctor next time if we can switch to Ofev next time and it’s consequences on her case.</p>
<p style=”text-align: left;”>Also I want to ask since my mom is taking oxygen supplement 24/7 and we’re making her walk for few minutes every day but some… Read more

Hi @Mark!

Hope you’re doing well. I wanted to ask something about the medicine. My mom was taking Pirfenex 200 mg 2 tablets 3 times a day but since last month doctor has increased the medicine intake so now she’s taking 3 tablets at a time which is total 9 tablets a day. The medicine also we need to order from India since we live in Nepal. And… Read more