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Re: [PF_Support_Group_India] My mother diagnosed with ILD in 2008 October

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  • Sreemannarayana B
    Hi, How are you doing? Doctor has been keeping my mom on 1 liter/night oxygen and have been paying rent 3500 every month. If i calculate last 8 months and
    Message 1 of 16 , Oct 5, 2010
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      Hi,
      How are you doing? Doctor has been keeping my mom on 1 liter/night oxygen and have been paying rent 3500 every month. If i calculate last 8 months and seeing future need, I am thinking of buying one concentrator. Doctor also suggested the same. I am just thinking of which one to buy

      Basically i got quotes for 5 lit/min concentrators
      devilbliss company---40000+tax
      philips respironics--42000+tax
      some airsep company---i avoided this because i heard not that much quality

      From: Geeta Vasudev <gita1_v@...>
      To: PF_Support_Group_India@yahoogroups.com
      Sent: Mon, April 26, 2010 5:57:23 PM
      Subject: Re: [PF_Support_Group_India] My mother diagnosed with ILD in 2008 October

       

      Dear Sreeman,
      very glad to know that your mother is better. i will give you a phone no. for o2cylinders and concentrators you will get all information here ,
      At Fax-Air-Alsur  Raju Kukarni   9342502961
      there 2 alternatives , You can either use 02 cylinders on hire ( all kinds are available ) they are home delivered. Or you can hire or buy coentrators. do not hurry in buying till you have made a proper study of the market.You can call me at 022-27820740.
      Regards
      Geeta


      --- On Sun, 4/25/10, Sreemannarayana B <sreebalineni@ yahoo.com> wrote:

      From: Sreemannarayana B <sreebalineni@ yahoo.com>
      Subject: Re: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October
      To: PF_Support_Group_ India@yahoogroup s.com
      Date: Sunday, April 25, 2010, 6:19 PM

       
      Yesterday we have gone for follow up and Doctor told us there is no disease progress. it seems almost arrested.She has suggested to go on to oxygen every night 1liter for one month. We are going for rental basis O2 conc and they are charging 3500. Doctor told us no need to buy now. Out of curiosity i tried to found out and came to know that it costs around 60,000. Is it right

      Thank you


      From: Sreemannarayana B <sreebalineni@ yahoo.com>
      To: PF_Support_Group_ India@yahoogroup s.com
      Sent: Sat, April 24, 2010 9:42:56 AM
      Subject: Re: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October

       
      Hi Geeta,
      Sorry. this week was hectic with job.She seems to be well. Last week only my mother got discharged from hospital and when they checked O2 it was 96 to 97. In this week except one day(fever. not sure if it was due to antibiotics tablets) she has done very well. She was doing breathing exercises also.when we asked the doctor about oximeter and o2 at home, she told when required she only would suggest us so could not insist on that.
      Today we are going for follow up. I will ask her again.

      Thanks a lot for your support. I will be in touch.


      From: Geeta Vasudev <gita1_v@yahoo. com>
      To: PF_Support_Group_ India@yahoogroup s.com
      Sent: Thu, April 22, 2010 10:19:59 AM
      Subject: Re: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October

       
      Sreeman,
      there is no word from you.
      How is your mother?
      Have you bought an oximeter ? or got the saturations checked?
      Regards
      Geeta

      --- On Mon, 4/19/10, Sreemannarayana B <sreebalineni@ yahoo.com> wrote:

      From: Sreemannarayana B <sreebalineni@ yahoo.com>
      Subject: Re: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October
      To: PF_Support_Group_ India@yahoogroup s.com
      Date: Monday, April 19, 2010, 5:10 PM

       
      Hi,
      Thanks a lot for the reply. First of all I should appreciate your efforts in setting up and managing this group to help others. The first lesson we should learn from you is challenging the life bravely. May I raise any question that comes to my mind(Ofcourse I will control and try to do sensibly)?

      My mother is at 48 now.we are from Andhra basically and can not speak/understand kannada. I would like to hear about the following

      1) When breathlessness increases what can we do at home in the first place just like First Aid?

      2) Does Pranayama ( Ramdev Baba yoga) controls this disease?

      3) How are you maintaining oxygen at home? Should we also buy one?

      4) I am worried if i am under the right doctor and right treatment? As of now her medication is
      Predtmet 16 MG
      Mucinac 600MG
      Shelcal 500 MG
      Clavicel (recently given for fungal infection)

      5) what all we can do at home to control her disease?

      My mother does not want to stay with us in Bangalore. She wants to move to native place(emotionally attached) and live there but i am reluctant because there i don;t find any proper hospital and i am worried what may happen at any time.


      From: Geeta Vasudev <gita1_v@yahoo. com>
      To: PF_Support_Group_ India@yahoogroup s.com
      Sent: Mon, April 19, 2010 4:19:41 PM
      Subject: Re: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October

       
      Hi Sreeman ,
      I am sorry to hear about your mother and her illness. I can understand your worry because very little is known about  the illness and there is little awareness about the same,
      Are you from Bangalore ?if so it might help you to know that I am also originally from bnagalore, though I have lived all my life in mumbai, more importantly I speak kannada and that might help me in communicating directly with your mother . please give me a call.you can send me an  E-mail answering specific questions  and I shall help you to whatever extent possible.
       
      I have been suffering from fibrosis  since 14 years and i am now using 02 24/7. I am 60years old , at present i  am stable and i do most of my house work myself. I am on 10mg of prednisone  among other meds.
      ILD as you say is a wide term for pulmonary fibrosis of diff erent kinds.there is no cure for it but it can be controlled.
      I do not know the doctor you mention and there is no need for me to know her.
      regards
      Geeta

      --- On Mon, 4/19/10, sreebalineni <sreebalineni@ yahoo.com> wrote:

      From: sreebalineni <sreebalineni@ yahoo.com>
      Subject: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October
      To: PF_Support_Group_ India@yahoogroup s.com
      Date: Monday, April 19, 2010, 10:46 AM

       
      My mother was diagnosed with ILD in October 2008. She is under Dr Pada Sundaram (manipal hospital, Bangalore) treatment since 2008. Though I don;t know about her much seems to be we are under right doctor. Dr told us (in 2008) 35% of the lungs are damaged and latest CT scan not showing any disease improvement. She had been put on Predtmet 4MG (1 year 3 months) and after that Dr stopped those tablets. But My mother has suffered from continuous fever and hard cough. Last week we admitted her in the hospital and Dr told this time it might be due to some fungal infection because CT scan not showing any disease progress but she is giving predtment 16mg for 1 week. In CT scan it some "Opacity" was observed.

      I am helpless while my mother is suffering. I need your suggestions, support in getting the right treatment for her. Has any one of you heard about Dr Padma sundaram? Any latest improvements in curing this ILD? Any idea how my mother condition is. My mother is so worried because my sister did not get married and she is not educated hence not able to educate her about the disease. My mother is religious and even she is not educated and she is strong person (except few times) as she leaves everything to god.

      I am not sure if i had put my feelings properly.

      regards
      Sreeman








    • Geeta Vasudev
      Sreeman, glad to know that you have decided to buy a cocentrator.I t is a n inevitable thing and you will have to do it one day or the other. Your rates seem
      Message 2 of 16 , Oct 7, 2010
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        Sreeman,
        glad to know that you have decided to buy a cocentrator.I t is a n inevitable thing and you will have to do it one day or the other.
        Your rates seem to be very reasonable . can you tell me how many hours in total it will give?
        regards
        Geeta

        --- On Tue, 10/5/10, Sreemannarayana B <sreebalineni@...> wrote:

        From: Sreemannarayana B <sreebalineni@...>
        Subject: Re: [PF_Support_Group_India] My mother diagnosed with ILD in 2008 October
        To: PF_Support_Group_India@yahoogroups.com
        Date: Tuesday, October 5, 2010, 5:06 PM

         
        Hi,
        How are you doing? Doctor has been keeping my mom on 1 liter/night oxygen and have been paying rent 3500 every month. If i calculate last 8 months and seeing future need, I am thinking of buying one concentrator. Doctor also suggested the same. I am just thinking of which one to buy

        Basically i got quotes for 5 lit/min concentrators
        devilbliss company---40000+tax
        philips respironics--42000+tax
        some airsep company---i avoided this because i heard not that much quality

        From: Geeta Vasudev <gita1_v@...>
        To: PF_Support_Group_India@yahoogroups.com
        Sent: Mon, April 26, 2010 5:57:23 PM
        Subject: Re: [PF_Support_Group_India] My mother diagnosed with ILD in 2008 October

         
        Dear Sreeman,
        very glad to know that your mother is better. i will give you a phone no. for o2cylinders and concentrators you will get all information here ,
        At Fax-Air-Alsur  Raju Kukarni   9342502961
        there 2 alternatives , You can either use 02 cylinders on hire ( all kinds are available ) they are home delivered. Or you can hire or buy coentrators. do not hurry in buying till you have made a proper study of the market.You can call me at 022-27820740.
        Regards
        Geeta


        --- On Sun, 4/25/10, Sreemannarayana B <sreebalineni@ yahoo.com> wrote:

        From: Sreemannarayana B <sreebalineni@ yahoo.com>
        Subject: Re: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October
        To: PF_Support_Group_ India@yahoogroup s.com
        Date: Sunday, April 25, 2010, 6:19 PM

         
        Yesterday we have gone for follow up and Doctor told us there is no disease progress. it seems almost arrested.She has suggested to go on to oxygen every night 1liter for one month. We are going for rental basis O2 conc and they are charging 3500. Doctor told us no need to buy now. Out of curiosity i tried to found out and came to know that it costs around 60,000. Is it right

        Thank you


        From: Sreemannarayana B <sreebalineni@ yahoo.com>
        To: PF_Support_Group_ India@yahoogroup s.com
        Sent: Sat, April 24, 2010 9:42:56 AM
        Subject: Re: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October

         
        Hi Geeta,
        Sorry. this week was hectic with job.She seems to be well. Last week only my mother got discharged from hospital and when they checked O2 it was 96 to 97. In this week except one day(fever. not sure if it was due to antibiotics tablets) she has done very well. She was doing breathing exercises also.when we asked the doctor about oximeter and o2 at home, she told when required she only would suggest us so could not insist on that.
        Today we are going for follow up. I will ask her again.

        Thanks a lot for your support. I will be in touch.


        From: Geeta Vasudev <gita1_v@yahoo. com>
        To: PF_Support_Group_ India@yahoogroup s.com
        Sent: Thu, April 22, 2010 10:19:59 AM
        Subject: Re: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October

         
        Sreeman,
        there is no word from you.
        How is your mother?
        Have you bought an oximeter ? or got the saturations checked?
        Regards
        Geeta

        --- On Mon, 4/19/10, Sreemannarayana B <sreebalineni@ yahoo.com> wrote:

        From: Sreemannarayana B <sreebalineni@ yahoo.com>
        Subject: Re: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October
        To: PF_Support_Group_ India@yahoogroup s.com
        Date: Monday, April 19, 2010, 5:10 PM

         
        Hi,
        Thanks a lot for the reply. First of all I should appreciate your efforts in setting up and managing this group to help others. The first lesson we should learn from you is challenging the life bravely. May I raise any question that comes to my mind(Ofcourse I will control and try to do sensibly)?

        My mother is at 48 now.we are from Andhra basically and can not speak/understand kannada. I would like to hear about the following

        1) When breathlessness increases what can we do at home in the first place just like First Aid?

        2) Does Pranayama ( Ramdev Baba yoga) controls this disease?

        3) How are you maintaining oxygen at home? Should we also buy one?

        4) I am worried if i am under the right doctor and right treatment? As of now her medication is
        Predtmet 16 MG
        Mucinac 600MG
        Shelcal 500 MG
        Clavicel (recently given for fungal infection)

        5) what all we can do at home to control her disease?

        My mother does not want to stay with us in Bangalore. She wants to move to native place(emotionally attached) and live there but i am reluctant because there i don;t find any proper hospital and i am worried what may happen at any time.


        From: Geeta Vasudev <gita1_v@yahoo. com>
        To: PF_Support_Group_ India@yahoogroup s.com
        Sent: Mon, April 19, 2010 4:19:41 PM
        Subject: Re: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October

         
        Hi Sreeman ,
        I am sorry to hear about your mother and her illness. I can understand your worry because very little is known about  the illness and there is little awareness about the same,
        Are you from Bangalore ?if so it might help you to know that I am also originally from bnagalore, though I have lived all my life in mumbai, more importantly I speak kannada and that might help me in communicating directly with your mother . please give me a call.you can send me an  E-mail answering specific questions  and I shall help you to whatever extent possible.
         
        I have been suffering from fibrosis  since 14 years and i am now using 02 24/7. I am 60years old , at present i  am stable and i do most of my house work myself. I am on 10mg of prednisone  among other meds.
        ILD as you say is a wide term for pulmonary fibrosis of diff erent kinds.there is no cure for it but it can be controlled.
        I do not know the doctor you mention and there is no need for me to know her.
        regards
        Geeta

        --- On Mon, 4/19/10, sreebalineni <sreebalineni@ yahoo.com> wrote:

        From: sreebalineni <sreebalineni@ yahoo.com>
        Subject: [PF_Support_ Group_India] My mother diagnosed with ILD in 2008 October
        To: PF_Support_Group_ India@yahoogroup s.com
        Date: Monday, April 19, 2010, 10:46 AM

         
        My mother was diagnosed with ILD in October 2008. She is under Dr Pada Sundaram (manipal hospital, Bangalore) treatment since 2008. Though I don;t know about her much seems to be we are under right doctor. Dr told us (in 2008) 35% of the lungs are damaged and latest CT scan not showing any disease improvement. She had been put on Predtmet 4MG (1 year 3 months) and after that Dr stopped those tablets. But My mother has suffered from continuous fever and hard cough. Last week we admitted her in the hospital and Dr told this time it might be due to some fungal infection because CT scan not showing any disease progress but she is giving predtment 16mg for 1 week. In CT scan it some "Opacity" was observed.

        I am helpless while my mother is suffering. I need your suggestions, support in getting the right treatment for her. Has any one of you heard about Dr Padma sundaram? Any latest improvements in curing this ILD? Any idea how my mother condition is. My mother is so worried because my sister did not get married and she is not educated hence not able to educate her about the disease. My mother is religious and even she is not educated and she is strong person (except few times) as she leaves everything to god.

        I am not sure if i had put my feelings properly.

        regards
        Sreeman









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