lung transplant

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Hello :)

I’m new to this app, I’m hoping to meet people who have similar illnesses and struggles, it’s hard finding anyone who can really understand what it’s like. Adding all my hashtags hoping that I’ll meet people going through the same things I am!if anyone wants to chat shoot me a message :) #ChronicIlless #Gastroparesis #PulmonaryArterialHypertension #PulmonaryHypertension #HeartTransplant #LungTransplant #heartfailure #MastCellActivationDisorder #EhlersDanlosSyndrome #HickmanLine #FeedingTube #Gtube #PrimaryImmunodeficiency

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What do you do with durable medical equipment you don't need anymore? #LungCancer #LungDisease #LungTransplant # #InterstitialLungDisease #Asthma

Since I moved up to the Inogen One G3 I no longer need my homefill system but I do need the space it takes up. This thing is large enough to be added to my lease. I have been looking for months for a responsible way to move this piece of equipment on without luck. The company that gave it to me has changed names three times and denies any knowledge of me or the equipment (while trying to sign me up for additional equipment to abandon no doubt). I'm out of ideas. Have any of you ever been in this situation? What did you do? I want to do the right thing. But I'm tempted to set it outside the door of the oxygen company that supplied then denied it.🤬

#LungTransplant #ChronicLungDisease #COVID19 #Mesothelioma #non-SmallCellLungCancer #ChronicObstructivePulmonaryDisease #CongestiveHeartFailure

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The wrong treatment

I’m from Brazil, and I’m struggling to learn something in English cause the treatment in USA is way much better than from here, unfortunaly.
Last week a child (who was my friend) has died because she didn’t get the acess to our basical medications, her mother was crying and begging for someone help her, and the doctors doesn’t want to help her. Actuality... the doctors does tried to help her child, but they didn’t know how to do it properly. She was telling all the time that she wants to do the transplant or just get in into the list, but the doctor denied and said that it was bullshit. Unfortunaly she passed away...
Yesterday I started to talk with a young boy who is in the same situation, and doesn’t receive his medications. Not even Creon!!! And he is too poor to buy all the medicines by himself. I donated my treatment but it won’t help forever.
There’s a lot of these cases, and this make me gone wild.
I’m praying that Trikafta get here quickly cause I don’t know if I will survive until my transplant, and I was hoping that Trikafta saves me for a few years to the surgery, but if a lot of people w CF aren’t getting their treatments, can you imagine how long Trikafta will be late? I’m so worried.
Sorry for the terrible English, Im trying to learn. ♥️ #Trikafta #CysticFibrosis #LungTransplant

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My clinic informed me that transplants are on hold due to COVID-19? Anyone else heard the same? #Transplant

I am very concerned that resources for transplant recipients (to be) are being taken away without anyone to advocate on our behalf. #LungTransplant #COVID19

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