Another Victory

This is why we do it. Olya in the Ukraine needed a biPAP which she couldn't possibly afford. She contacted ALS Guardian Angels. I chat with the ALSGA coordinator quite frequently, heard the story, and donated my old biPAP. ALSGA shipped it to Poland and Olya's friends got it to her from there. Another PALS given more time alive by cooperation and action within the global PALS family. Although I appear in this story, it is not about me: It is about how we as PALS can change our own lives and the lives of each other. Without the new communications technologies now available (and the ability to use them) this could not have happened. The following is an email trail following receipt of the biPAP and a technical issue resolved. Some of the discussions took place over real-time chat and so aren't shown here. Total time from request to receipt and use was less than a month. -------------------------------------------------------------------------- From: Olya@.ru To: @.com Subject: I want to say thank you Date: Thu, 31 Mar 2011 00:19:27 +0400 Hello, Lisa! I can't wait to share my happiness with you. Today I've used the bipap for an hour or so for the first time and I felt excellent. Much better than without it. I learned how to do settings. I find my mask to be comfortable too. I feel deep relief now. I'm not scared any more not being able to breath normally and sleepless nights are the past. I've attached a picture of me while bipap therapy. Now I'm thinking back and understand that is would not be possible without ALS GuardianAngels, Stu and your priceless help. There were obstacles to ship the bipap and receive it, but you were so patient and sympathetic to me and to all this process. I sometimes can't believe it's true. When I tell people, that an American organisation helped me with the bipap and tell them this story,they say: "It's something unbeliveble, it's really hard to believe that miracles do happen". You can't imagine how much your help means for me and my family. I'm writing this and understand that I can't find right words to express how grateful I am.I also want to tell Eric (the donar) that his donation means '"surviving" for one more PALS (for me). That this is more than a gift! That I will always be grateful to him and never forget it. I want to cry out THANK YOU FOR EVERYTHING YOU ARE DOING FOR PALS! IT'S PRICELESS! Happy Olya 29.03.2011, 17:18, "ALS GuardianAngels" <@.com>:YAY, I am so relieved! Here is the companies contact information: Respironics Inc - 6 reviews - Place page www.respironics.com - 1001 Murry Ridge Drive, Murrysville, PA - (724) 387-5200 From: olya@.ru To: @.com Subject: Re: Olya: Mission accomplished! Date: Tue, 29 Mar 2011 15:09:30 +0400 Hello Lisa, It was voltage issue (the user guide info was right). My husband bought another adapter and the bipap works with the new one. Actually, at first we used an adapter too (an American one, as we have American product and it does with the device), but the bipap didn't work with it, but Ukrainian adapter is good.Thank you, Lisa, for your help, anyway. I was really worried. But I still need the contact of a provider in case something goes wrong in future.Model ð 1003986PCA1SN:3074661My phone number +38 095 700-68-67 29.03.2011, 02:25, "ALS GuardianAngels" <@.com>;:Also, please send me the model number and serial number...any other information would be great. A detailed reply about what is happening will also be helpful. Send me your phone number again as well. From: @.com To: olya@.ru Subject: RE: Olya: Mission accomplished! Date: Mon, 28 Mar 2011 18:23:01 -0400 For now, bring it in to your doctor at your appointment...they may have some advice. I'm hoping it's not a voltage issue between US and Ukraine products...we looked into that and we were certain it wouldn't be an issue. I can look for contact info, I already called them to see where the device was originally made (needed that for Customs). I will call them tomorrow as they are closed already today. From: olya@.ru To: @.com Subject: Re: Olya: Mission accomplished! Date: Tue, 29 Mar 2011 01:59:47 +0400 Picture is attached. This is what I see on the screen, when trying start the bipap. 29.03.2011, 01:07, "ALS GuardianAngels" <@.com>;:Olya, here is the user guide: http://global.respironics.com/UserGuides/UserGuideBiPAPSynchrony.pdf Let me know if this helps or not. Otherwise, I can definitely ask the Donor if he has any suggestions. From: olya@.ru To: @.com Subject: Re: Olya: Mission accomplished! Date: Tue, 29 Mar 2011 00:51:09 +0400 Hello Lisa, We have just tried to start the bipap and failed. It does turn on, but in several seconds long alarm sound and red solid and yewllow solid turn on while system self test. I think we should adress the provider, but we don't have one. Could you advice what to do? 28.03.2011, 17:58, "ALS GuardianAngels" <@.com>;:I just received this wonderful update form Olya! Also, since Olya wished to thank the donor I included him on this message. Olya, his name is Eric Valor...and he's a wonderful man and PALS from Santa Cruz, California. Thank you all, and Olya I look forward to more updates on how you are doing! - LisaFrom: olya@.ru To: @.com Subject: Re: Need help to live with ALS Date: Mon, 28 Mar 2011 16:53:01 +0400 Hello, Lisa! I have news. I've just received the bipap and the mask. I didn't try it yet. I'm going to see a doctor tomorrow and she should do all the settings. But I'm very excited I have the bipap. I will do my best to get accustomed to it. There is a nice surprise. When I opened the box, I found a humidifier there.I can't express how grateful I am to you and Stu and the donor and to all the people who helped me to get it and of course to God, who arranged my meeting ALS GuardianAngels. I'd love to thank the donor who agreed to donate it to me. I hope you can deliver my thanks to him. I am really very very excited. I can't believe everything is done.I will write you how I am doing with the bipap. Olya