@kristina
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Kristina grilo posted an update 9 months ago
@charlene-marshall does anyone know how Steve Dragoon is doing? I haven’t seen any posts from him for months, hope he’s ok
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Kristina grilo replied to the topic Olfactory changes with IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 9 months ago
If any of you have pets, be careful diffusing essential oils, some of them are lethal to our pets
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Kristina grilo posted an update 1 year, 5 months ago
@steve-dragoo Hi Steve…..I was reading your reply to someone, not sure who now, but you said that you don’t have a need for oxygen while you’re in the Philippines, and that the meds were quite different there…. may I ask what you are taking over there? I continue with the laser and some over the counter supplements, but have to have oxygen…[Read more]
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@kristina Hi Kristina – I do need O2 over here once in a while but it is hard to find as are most quality meds – is what I meant. But my O2 need is rare and short term (seconds) so far. I am 71 and diabetic and have PAH but this morning I took my pulse with my O2 meter and my heart was 55 BPM and saturation was 97. A year ago saturation was 98…[Read more]
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Kristina grilo posted an update 1 year, 6 months ago
@westds01
Thank you Robert, for answering my question about the type of antibiotic you’re taking. The reason I ask is because there are several studies done where antibiotics were used, specifically minocin, with great results. There’s a theory that the fibrosis is a result of bacteria build up. If you want, read the book by Henry Scammel,…[Read more] -
Kristina grilo posted an update 1 year, 6 months ago
@westds01 hey Robert, I’m wondering……is the antibiotic you’re on called Minocin?
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No, it is arithromiacin 250 mg. M-W-F, and Prednisone 7 days 10 mg. I also take Trelogy inhaler daily in place of Advair and Spiriva. The doctor talked to me about thre fibrosis medicine recently but said there were serious side effects. I’m doing really good on what I’m taking now. It is the first time in 20 years I’m not coughing all the…[Read more]
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Kristina grilo replied to the topic Laser Treatment. Whats going on? in the forum Using Our Forums 1 year, 10 months ago
I continue do do them twice a week and it’s keeping me stable. No drugs and just ocasional oxygen
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Kristina grilo replied to the topic Port-a-Cath Use in Patients with Pulmonary Fibrosis in the forum Upcoming Medical Appointments: Q&As 2 years ago
How long will the surgery take?
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Kristina grilo posted an update 2 years ago
@charlene-marshall I was wondering if you had heard from Steve Dragoon, I’m a little concerned about him being over in the Philippines what with the 2 hurricanes they just had over Christmas. Plus I haven’t seen anything posted from him in a couple of months
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We must have been writing each other at the exact same time @Kristina! That is funny 🙂 I just let you know that Steve is doing okay, I’ve been corresponding with him over email but we’re unfortunately having some issues with his login onto the forums. I don’t know why, I’m trying to sort it out with him but he’s been responsive to my emails! So…[Read more]
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Kristina grilo posted an update 2 years ago
@steve-dragoo , are you ok? I see you have not posted anything for 2months, and you guys had 2 hurricanes over there so I’m a little concerned.
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Hi @kristina — happy holidays! I’ve been in touch with our dear friend @steve-dragoo over email a few times. He is doing okay, just is having log-in issues with the forums 🙁 We’re trying to figure out the technology glitches for him but aren’t having much luck. I miss him on the forums too! Hopefully we can figure it out soon. Char.
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@kristina, @charlene-marshall – most kind of both of you to check-in. Yes, I have had a few issues with the forums and newsletter for a while but doing just fine. Also being 13 hours ahead of East USA, my timing is a little off and I have more things to do now that I am reunited with my family.
Since coming here in May, I have used no O2 and…[Read more]
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Hi @steve-dragoo,
So nice to hear from you – thanks for updating us on how you’re doing. Certainly prioritize being reunited with your family, that is important, and also know your “forums family” thinks of you often 🙂
Andy was likely referring to “air trapping”, which is actually unusual for IPF (from what I understand, this is more of a…[Read more]
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@charlene-marshall – THanks for the “forum family” kind words. I’ll catch up soon as we had 2 weddings since Christmas and travellers from all over the world. The 2nd wedding was 1/8.. Peace – Steve
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Looking forward to catching up with you when you have some time my friend. No rush though, prioritize time with your wife and family. Take good care, and thanks for connecting! Char.
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PS> – It should say I feel “no” great need for O2.
Yes, we had 2 typhoons but most of them hit the northeast offshore and turn north and streak across the middle islands known as the Visayas or sometimes to the southern part of the northern islands where Manilla is; known as Luzon (Confusing because there are over 7600 islands in the…[Read more]
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Kristina grilo posted a new activity comment 2 years, 4 months ago
Thank you Dr. Hall
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Kristina grilo posted an update 2 years, 4 months ago
@drandyhall Good morning dr. Hall, I have a quick question about the laser. My doctor has used it by waving it back and forth over my skin, but John Sykes uses a different head and his doctor rolls it over his lungs. Do you wave yours or roll it? Thank you
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Good morning Kristina!
I know I’ve been out of touch, have been camping this week and just got home last night. Only got to get online a couple times while I was gone. Anyway, I do not use contact with the skin. I really don’t think it makes a difference whether there is contact or not. But a medium application head is better than a wide beam…[Read more]-
Thank you Dr. Hall
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Kristina grilo replied to the topic Sodium Pyruvate in the forum Clinical Trials 2 years, 4 months ago
I bought some on amazon, but it’s a powder. Now I have to purchase a nebulizer…..not sure if it’s going to work…also I’m a little afraid of trying it, so i have not bought the nebulizer…..yet..
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Kristina grilo posted a new activity comment 2 years, 4 months ago
Thanks Denny…I’m a little skeptical, especially considering the $900 price tag….if they work it would be awesome, if not …..and I would have to take at least 3 months worth….I need to think more througly and unfortunately I can’t find anything on the internet about wei, which is a red flag for me, just their own referrals…
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Kristina grilo replied to the topic Is this what depression feels like? in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 5 months ago
I am so sorry….do you have a Bible you can read? I find that my faith really helps a lot when all seems lost. Please don’t give up, God loves you!
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Kristina grilo posted a new activity comment 2 years, 5 months ago
Yes, I am very interested in taking the product. I know they’re expensive but our health is worth it. OK, let me know the results of your ct and then order this stuff. Thank you Dr. Hall
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Ok, I’ll be in touch as soon as I get my results.
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Hi Kristina,
I just got my CT scan results. I was hoping that there would be less fibrosis, but there is no change in that. There was however an improvement in that there is less ‘air trapping’. The best news of course is that it’s not worse.
So, if you provide me with your phone number, I will call Casandra at Wei labs and I will have her call…[Read more]
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Kristina grilo posted an update 2 years, 5 months ago
@caneelbay1 I’ll go with you, lol..I’m not joking though…I don’t think I have 2 or 3 years to wait for the medication to be approved here. I looked online to see if i could order it but so far no go. Also thinking about Steve Dagoo, he’s in the Philippines, maybe it would be easier for him to purchase it over there and mail it to us. I’m also…[Read more]
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Kristina grilo posted an update 2 years, 5 months ago
@drandyhall I hops things are good with you. I was hoping you could let me know if the Wei herbs are helping you at all. I asked the same from Steve Dagoo and he said that yes, they are helping him. I would also like to hear your opinion , please ! Thank you Dr. Hall
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Hi Kristina! Yes, I know that the Wei products have been very helpful for Steve. I have been taking them and my cough is certainly better, so it’s got to be doing something! With the research that I have done on the Wei products I have read that many times it will actually reduce the fibrous tissue in the lungs and that is the main reason that…[Read more]
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Yes, I am very interested in taking the product. I know they’re expensive but our health is worth it. OK, let me know the results of your ct and then order this stuff. Thank you Dr. Hall
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Ok, I’ll be in touch as soon as I get my results.
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Hi Kristina,
I just got my CT scan results. I was hoping that there would be less fibrosis, but there is no change in that. There was however an improvement in that there is less ‘air trapping’. The best news of course is that it’s not worse.
So, if you provide me with your phone number, I will call Casandra at Wei labs and I will have her call…[Read more]
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Kristina grilo replied to the topic Sodium Pyruvate in the forum Clinical Trials 2 years, 5 months ago
Can we not order it online from a Chinese pharmacy? I’m going to see if I can…
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Kristina grilo posted an update 2 years, 5 months ago
@steve-dragoo
How have you been? You haven’t posted in a while, I hope things are good with you. Are the wei herbs helping you while you’re over there in the Philippines? Hope to hear from you soon….-
Hi Kristina – I have talked with some via email, Skype, or PM on the forum board. So thanks so much for asking. The herbs help a lot. Since coming here I have not used O2 at night because I don’t have a concentrator yet and had only a couple very minor issues. Walking stairs is easier, breathlessness is far less and a lower heart rate…[Read more]
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Kristina grilo started the topic Starting esbriet in the forum Diagnosis Information and General Questions 2 years, 5 months ago
My lung function is at 61% and my DLCO is 54. I have lung nodules and my pulmonologist wants 2 ct’s done with contrast….one to check for cancer and another for blood clots…..the tests differ from each other, that’s why he wants 2. I’m not on oxygen, yet, and he wants me to start on esbriet….I have no questions, just want to vent…[Read more]
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Hi @kristina, your ears must have been ringing! I was talking about reaching out to him with another member today, so I’ve just sent him an email to check in. I also hope he is okay! I’ll let you know when I hear how he’s doing. Char.