#bronchiolitisobliterans

[miarhy84]

Day 750: It's important to always dress for success! 😂😎😜 - - #butstillbreathing #adayinthelife #bronchoscopy #bairclaws #hospitalgown #doublelungtransplant #lungtrandplant #bronchiolitisobliterans #chronicrejection (at Houston Methodist Hospital)

[miarhy84]

#dailyinspiration! Never forget... You're never "too sick!" Don't let anyone convince you otherwise. 💜💜💜 . . . #repost #hellogiggles #transplantpatient #bronchiolitisobliterans #butstillbreathing #cvid #immunedificiency

[miarhy84]

I pledged to myself in a previous post, "Yes, I have chronic rejection. Yes, I have CVID. JRA. Auto immune disease. Gastoparesis. Immunehypogylcemia. ETC. ETC. My situation is "complicated." ..... 😷🤕🤔 But, I'm going to go on adventures, anyway. Despite all that! They may be small to others, but they'll be mountains to me. 🏔🏔🏔🏔🏔". Immediately after my transplant, I was afraid of doing something that would harm my new lungs in some way and invalidate the sacrifice of my donor and his or her family, my transplant team, my family, all who in the end helped to save me. I didn't want to disappoint them. The fear of doing something wrong prevented me from doing many things. I think it is a sort of "Rite of Passage" when a patient finally overcomes this self-doubt. It takes longer for some than others. I've taken a lot longer than to heal both physically and emotionally. But now that I am beginning to do so, I have started to go on my Mountainous Adventures (see picture above😂.) Sometimes you happen meet giant stuffed animals. Sometimes that stuffed animal is a hot pink dinosaur. My advice? Take a picture with her (or him, depending on the eyelashes!) You may NEVER get this chance again! Nowadays, I find adventures around almost every corner. They're not mountains, to be fair. But , they're not as scary as before. Instead, they are exciting and beautiful and amazing. And sometimes they come in the form of a hot pink dinosaur in a grocery store. Today was a great day. . . #ilikebigbutts #isawapinkdinosaur #mountainousadventures #goodbyefear #butstillbreathing #transplantlife #becauseofadonor #endthewaitlist #areyouanorgandonor #donatelife #donatelifetexas #lifegift #adayinthelife #transplantpatient #adventure #fieldserviceadventures #bronchiolitisobliterans #bronchiolitis (at Brookshire Brothers)

[miarhy84]

#adayinthelife of a #doublelung #transplantpatient! Lung transplant patients must regularly check their lung functions to see how their new lungs are doing. 🌬 Sometimes even the slightest decline (which at times cannot even be felt by the patient) can indicate early rejection or an early infection and must be treated immediately. It can also be encouraging to the patient to watch their lung function go up over time. So, after transplant , a patient is sent home with a device similar to the one that I am using in this video. It measures various lung functions - such as forced vital capacity and forced expiratory volume, as well as the peak flow. All of these numbers indicate different functions of the lung and airways. Testing this way frequently and comparing the numbers to one another as a very important part of a lung transplant patients normal routine. . . . .#butstillbreathing #transplantlife #doublelungtransplant #bronchiolitisobliterans #bronchiolitis #primarygraftdysfunction #chronicillness #cvid #immunedificiency #primaryimmunodeficiency #pfts #lungfunction #spirometry #spiropd (at Jasper, Texas)

[miarhy84]

So much had happened to me in such a small span of time. It's actually impossible to fathom at times how much. Sometimes I feel like I'm standing in the eye of a tornado, and when I look up and around, I can see my life swirling by and encircling and past me. I try to reach out and grab it, just for a second, to stop time, to slow the process, but it's just too fast. All I can do is stand there, in the middle of it, and watch, trying to glance a moment, an image, a beautiful memory, every now and then to prove I'm still... Living. I'm so glad someone invented photography. 😏 Here it is, Mia. You're alive! You're really doing it! . . . #bestnine2016 #seeyah #doublelungtransplant #transplantlife #transplantpatient #becauseofanorgandonor #areyouanorgandonor #iamliving #survivor #transplantsurvivor #bronchiolitis #bronchiolitisobliterans

[miarhy84]

BAHAHAHAHA! I feel yah, Phoebe. I look like that right now.... The result of #wetandrainy weather plus late #ivig! Thanks #CVID! #hackingcough #easttexas #boggybog . . . #transplantlife #doublelungtransplant #bronchiolitisobliterans #immunodeficiency #immunosuppressed #butstillbreathing (at Don Ford Plumbing)

[miarhy84]

"I went all the way to the Heart Cath Lab, and all I got was these disposable headphones!" #badumtss BAHAHAHAHA 😂😂😂 . . . #deflectwithhumor #justlaugh #humor #joker #transplantlife #transplantpatient #doublelungtransplant #theoldticker #ticktock #angiogram #leftheartcath #catheterization #heart #hearttest #badgenes #chronicrejection #bronchiolitisobliterans #butstillbreathing #CVID #cvidwarrior #cvidzebra #immunodeficiency #imazebra (at Houston Methodist Hospital)

[miarhy84]

#pfts anyone??? 🤓 Getting by breath on. Haha! "Deep breath... Now, Blow, blow, BLOW!" #transplantlife #transplant #doublelungtransplant #lungfunction #lungtransplant #lungdisease #bronchiolitisobliterans #primarygraftdysfunction #chronicrejection #butstillbreathing #houstonmethodist (at Methodist Hospital Dunn Tower)