Reshma Joshi
Forum Replies Created
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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 [email protected]
Thank you for being so kind. I’m very overwhelmed from all you guy’s support ???
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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 these days. So is buying a treadmill a good idea?
With Love
Reshma
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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
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Hi @reglois 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 or climb the stairs even if it’s hard for her? The question always is how much should we push her to walk or exercise?
About the Bootcamp that you suggested Charlene, it looks very productive. I’ll definitely check into it. Thanks a lot ?
Warm regards
Reshma
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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 steroids for a week now but he said to completely stop after 7 days, no taping down. Is it safe to stop like this? Doctor said since it’s only for 7 days it’s ok not to tap down. So we’re bit surprised about that.
It’s a very hard day for us today, me and my sister to get this news. I can barely even hold myself. My mother is just 57 and this fast these things happened. Please help us with any advices, information or suggestions about how she can fight this disease ?
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Hi Charlene
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 .
Yes, we follow the rules of taping down the steroids and will keep on doing so. She’s a bit fine today after taking steroids. Hopefully this will ease her for some time.
Thank you for your concern ?
Warm regardsReshma
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Hi @reglois
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. I’m very grateful to everyone in this Forum ?❤️
Thank you Susan for your suggestions about sleeping positions and all ?
Take care
Reshma
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Hi @reglois (Susan)
Thank you so very much for such a prompt response. I’ll share these suggestions with my family ASAP. Thank you ?
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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 falling then they give her oxygen immediately. They went to the hospital this morning and asked to do x-rays and CT scan. X-rays showed a bit increase of the scars. Her doctor said to get admit in the hospital for monitoring but my mom didn’t want to stay so they came back home with. She’s been prescribed steroids 40 mg for a week. Should she have stayed in the hospital? I was telling her to stay in hospital but she says they give same oxygen and steroids in the hospital as well which I’m having in home. So we’re very confused about this situation whether to let her stay at home or in the hospital.
Warm wishes
Reshma
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@anjanaiyer
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 just prescribe medicine and nothing else. The best thing I have done in my life is to join this forum. It has been so helpful to us and we have adopted many advices from this forum which has helped my mom alot. Yesterday when you shared about giving Ensure to your mom has brought me to attention about such things so I immediately talked to my sister and she arranged it back in Nepal. So thank you so much for that ?
Because of this Covid, things are so bad in Nepal that medicines are out of stock since they’re supplied from India. We don’t know how we gonna manage that ?
It was very good talking to you Sita. Take care and warm wishes to your mom ?
Reshma
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@anjanaiyer
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 we have stopped giving her milk products and searching for other alternatives.
Also I would like to ask you is your mom taking steroids everyday? I can see that the doctors in different countries have their own ways of treatments and in our case my mom’s doctor doesn’t prescribe steroids unless it’s very severe. But when she takes those steroids she feels good and a little bit active so we asked her doctor of giving small doses of steroids everyday but they didn’t agree for it. That’s why we’re always confused about these steroids. Is it good or bad to take it everyday? -
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 as she eats a new thing she has high cough so we have stopped giving her fruits or any new food. She barely eats any fruits and even other vegetables and foods she’s scared to eat because of this high cough and this is making her losing weight and we’re so concern about this issue. Is it normal to loose weight? And what type of food should we give her to boost her energy and immunity? Please give me few examples of food intake, it might surely help us.
Take care Charlene and our warm wishes are always with you.
Reshma Joshi
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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
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@oxygenman
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 but it’s very hard to do anything in such cases. Please write to me about your normal daily life so that we could know how other IPF patients are dealing with it.
Best wishes,
Reshma
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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
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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 and happy ?
Best wishes,Reshma
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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) precribed Cortilone for 15 days. My mom hasn’t taken steroids for this long before (only upto 7 days she’s taken) so we thought not to give her steroids for few days, if her condition gets bad then we’ll give it. Is this a good decision that we made?
Best wishes and lots of love,
Reshma
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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) precribed Cortilone for 15 days. My mom hasn’t taken steroids for this long before (only upto 7 days she’s taken) so we thought not to give her steroids for few days, if her condition gets bad then we’ll give it. Is this a good decision that we made?
Best wishes, Reshma
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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
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Hello @mark-koziol :
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 in different countries. So we’re doing our best according to our resource availability. Anyway thank you for always responding to us. It means a lot to me and my family.
Warm regards, Reshma
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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 keep you updated on how she’s doing. Thank you so very much for always taking time and responding us. It means a lot for me and my family.
Lots of love,Reshma
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Hello @mark-koziol
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.
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 days it’s very difficult to walk even with oxygen, she started to cough a lot so we’re very confused whether we should make her walk in such condition? At the same time we’re afraid she might not be able to do her daily activities if we just put her in rest. So we’re very confused what to do. Please suggest me if you know something about it.
Thank you always for your response Mark ?Warm regards,
Reshma
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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 we don’t know if the medicine is working or not? My mom is taking oxygen supplement 24/7. So do you know anything about the medicine intake and the side effects? Anything you share will be a great help for us.
Warm regards,
Reshma