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#bronchiolitisobliterans

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Make fun with my henna #cherryhoney
Hari ni jam 8am last antibiotic Aliff.. harap sangat ni yg terakhir walaupon mustahil.. tapi Ibu akn usahakan juga jaga Aliff sebaiknya.. kenangan diabadikan.. Terima kasih utk semua kakitangan Wad 2 Isolasi 1 Jururawat, Pembantu, Doktor dan Pakar .. amat2 prihatin akan keadaan Aliff.. sampai dorg da kenal muka kitaorg πŸ˜‚πŸ˜‚πŸ˜‚
Doakan arini discaj ya semua.. Ibu rindu rumah rindu Abg Aqiff rindu Ayah.. #bronchiolitisobliterans
Lukisan hentam merapu meraban asalkan lepas gian 😜😜😜

Where i spend my days. 🏨πŸ₯🏩
#bronchiolitisobliterans #bronchiectasis #justbreathe #donatelife πŸ’

Peak flows above my pre pregnancy average at 29 weeks + 4 days! Proving every doctor wrong since 1978! #bronchiolitisobliterans #peakflow #chronicillness #malcombmade

This is my friend Lori and me in 2010 at Lungapalooza, a walk to benefit the Lung Transplant Foundation who raises money for research into finding a cure for chronic lung rejection after lung transplantation. Chronic rejection of the lungs is the number one cause of death post-lung transplant. The lungs are exposed to the air and pollution, unlike other solid organ transplants, and therefore have a greater chance of being scarred and rejected by the body.

Lori passed away 4 years ago today because of chronic rejection, antibody-mediated rejection, infection, and cancer. She was only 32! I miss her so much! She was one of my dearest, most beloved friends. She was real and true and faithful and good. Yes, she was one of the good ones. I pray everyday for a cure for chronic lung rejection. I'll always love you Lori! Until we meet again....
#cysticfibrosis #lungtransplant #doublelungtransplant #livinglobartransplant #chronicrejection #bronchiolitisobliterans #antibodymediatedrejection #cancer #infection #pneumonia #rip #bestfriends #heaven

Saw the absolute best garage sale sign πŸ˜„ #OhMuhGoshBecky

MOST RECENT

This seems to be an ongoing and ever changing process. β€œFrom the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I.” Psalm 61:2 (KJV) #sundayreflection #faith #hope #love #prayer #thankyoujesus

β€œBut I say to you, love your enemies, bless those who curse you, do good to those who hate you, and pray for those who spitefully use you and persecute you, that you may be sons of your Father in heaven..” Matthew 5:44-45 (KJV) #sundayreflection #faith #hope #love #prayer #thankyoujesus

It’s gonna be lit! Get it? Christmas lights? Lit?? I hate myself ... 😜 #MakeItADecemberToRemember

Thank goodness for that! πŸ’• #sundayreflection #faith #hope #love #prayer #thankyoujesus

Where i spend my days. 🏨πŸ₯🏩
#bronchiolitisobliterans #bronchiectasis #justbreathe #donatelife πŸ’

Ma goes to Germany and I get prezzies! How fun is that??! πŸ¦„πŸ« Thank you, Ma!! @pugridesshotgun ❀️ #PrezziesFerSchparkles #DidntEvenNeedAPassport ✈️

14/11/14 - 14/11/17
Muhammad Izz Ziqri Bin Mat Johan 3 years

Selamat hari lahir cinta ibu
Semoga terus kuat seperti selalu
Semoga terus jd hero ayah dan ibu
Semoga semua yg indah hadir dalam hidupmu

Selamat hari lahir yg ke 3 cinta
Semoga adik baik2 sahaja
Semoga jd anak soleh ibu dan ayah
Semoga kekal iman n Islam dihati izz hingga hujung nyawa *Note: Picture semua gambar adik seblum hari β€˜itu’.... kenangan manis kita dulu 😍

#ibuteringindengaradiklanggilibu
#sabarmenanti
#seindahsabar
#syukurselalu
#bronchiolitisobliterans
#postadenovirus

A storm came through yesterday and really packed a punch! It was combination of tornadoes, microbursts and straight line winds. The short of it is we are doing well and blessed to have a house!
We had gotten some weather alerts yesterday afternoon and didn’t think much about it. Everything looked okay and it’s November after all, we don’t get many thunderstorms or tornadoes now. Dad was driving home, about a 5 hour drive, and just so happened to be IN the storm’s path, driving in its direction. Mom knew he wouldn’t pull over somewhere, a stubborn Greek guy, and would push through.
A bit later, we lost power. This posed all kinds of problems for me being chronically ill. It was humid, I had no fan, I couldn’t burn candles because they irritate my lungs, I couldn’t use my nebulizer for a breathing treatment, so I sat in the pitch black dark and tried to be still. I couldn’t use a heating pad for pain. I could take a hot bath, but it was lightning so furiously, I decided against it. I don’t know if it’s true that you can get electrocuted by being in the tub in a lightning storm, but I wasn’t going to test the theory. πŸ›€
A few minutes later, Dad came home! Nothing like putting him right to work. He got a battery operated lantern for me, and an oil one for him and Mom (again, no burning oil because of my lungs πŸ™„). His Amish friend had gifted him this neat lantern that they use in their buggies, so at least I had a little light.
Weirdly, I couldn’t connect to the internet. Even if our Wi-Fi goes out, I can generally use cellular data, but I just got the spinning circle of death. πŸ’€ We had no idea about what was happening. The wind was roaring, not howling, ROARING. If there were tornado sirens, we would never have heard them. πŸŒͺ

Continued in comments ... πŸ“

This speaks to me .. loudly. #sundayreflection #faith #hope #love #prayer #thankyoujesus

dun... Dun... DUN.... πŸ˜¨πŸ˜±πŸ‘Ή #dontlooknow #itspfts #pftjitters

"Love not the world, neither the things that are in the world. If any man love the world, the love of the Father is not in him." 1 John 2:15 (KJV) #sundayreflection #faith #hope #love #prayer #thankyoujesus

CUTENESS OVERLOAD ➑➑➑➑➑ slide for complete overload #tbt #teamserenity #childlungfoundation #chILD #bronchiolitisobliterans

Lord, please help strengthen me to face life with more faith and less fear. #sundayreflection #faith #hope #love #prayer #thankyoujesus

Found some old pics.... Baby girl was only 3months old in the first pic n u can see how much pain she was in but we didnt quiet understand..... The second pic was the day she told me she was tired of the pain, tired of wearing oxygen, tired of not being able to do wht the other kids do....She has been fighting for her life since she was born...She is the definition of a warrior. She is my world. #teamserenity #childhoodinterstitiallungdisease #chILD #bronchiolitisobliterans #bronchiectasis #adrenalinsufficiency #PDA #GERD #immunodeficiency

Cerita 2 minggu lepas 😍😍😍
1st family holiday after 2years++
Holiday pertama untuk Izz Ziqri *Semua aspek sudah diambik kira - Hotel hanya di area KL - less than 40km from our house - No carpet in hotel room (dah call awal2 hotel bgtau condition anak dan dpt kerjasama baik dr pihak hotel) - No smoking area - Suction machine n nebulizer machine pun kami bawa - Izz tak mandi dalam kolam renang pun...bagi dia main air ngan kaki ja...tu pun tak sampai sejam ibu dah bawak naik bilik mandi satu badan ...takut2 udara luar tak bersih...ibu yang paranoid sgt

Dan yang paling kalut tetiba ari ahad kat hotel doctor call minta masuk ward esoknya utk OP PEG Tube...πŸ˜… (Tapi cancel and posponed to 19/10)

Alhamdulillah semuanya berjalan lancar seperti yang dirancang

#impiankakakzahirahtercapai
#happytengokanak2happy
#izzheroibuayahkakak
#bronchiolitisobliterans

Cerita semalam 4/10 di PPUM
Gastro clinic appointment *taktau napa kakak zahirah skang amik gambar tunjuk lidah...pengaruh selfie kot... πŸ˜…πŸ˜¬ #izzheroibuayahkakak
#bronchiolitisobliterans
#postadenovirus

Come fly with me..... Missing his class' paper plane competition was not an option for 11-year-old Alex.
Alex has been a patient of the Children's Hospital in Newcastle since he was five, following a rare complication of Mycoplasma pneumonia (a type of bacteria that can cause several types of infection) called bronchiolitis obliterans, an inflammatory condition that affects the lungs tiniest airways.

Not only has Alex competed in paper plane competitions in hospital, he has also overcome a fear of medical procedures with the assistance of Child Life Therapy. .
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#hospital #health #children #mycoplasmapneumonia #bronchiolitisobliterans #respiratory #fly #paperplanes #childlife #medicine #lungs #jhch #newcastle

"For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places." - Ephesians 6:12 KJV #sundayreflection #faith #hope #love #prayer #thankyoujesus

Selamat tinggal nurse
Selamat tinggal doktor
Aliff cuba untuk xdatang lagi ya..Aliff jga diri Aliff baik2 pasni
Terima kasih semunya.
#bronchiolitisobliterans

Make fun with my henna #cherryhoney
Hari ni jam 8am last antibiotic Aliff.. harap sangat ni yg terakhir walaupon mustahil.. tapi Ibu akn usahakan juga jaga Aliff sebaiknya.. kenangan diabadikan.. Terima kasih utk semua kakitangan Wad 2 Isolasi 1 Jururawat, Pembantu, Doktor dan Pakar .. amat2 prihatin akan keadaan Aliff.. sampai dorg da kenal muka kitaorg πŸ˜‚πŸ˜‚πŸ˜‚
Doakan arini discaj ya semua.. Ibu rindu rumah rindu Abg Aqiff rindu Ayah.. #bronchiolitisobliterans
Lukisan hentam merapu meraban asalkan lepas gian 😜😜😜

All the dogs. And Pugs, which are not dogs. ❀️ #dogsofinstagram #pug #dogsareagirlsbestfriend

Saat kaki tersesat tak tentu arah,
Saat bahu melemah tiada sandaran,
Saat hati perit tiada pengubat,
Saat itupun, Allah SWT ada bersamamu..
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Kita tak kan rasa apa yang orang lain rasa, setiap ujian yang kita dapat berbeza-beza. Saat Mek Reen diuji, selalu terlintas dalam fikiran "kenapa aku diuji dengan seberat2 ujian ini"? Masih tergiang ucapan lembut abah Mek Reen, "Allah uji adik sebab Allah tahu adik mampu". Ya Allah aku usaha semampu ku, selebihnya aku serahkan pada mu!
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Masyaallah, disebalik ujian tu banyak rahmat yang tersembunyi sehingga kini..Alhamdulillah. Sujud syukur padamu! Semoga kami sentiasa istiqomah dalam setiap perbuatan kami. .
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Doakan anak Mek Reen dan #pakcikhot "Nur Delischa Nasuha" dipanjangkan umur dan dipermudahkan segala urusan..amin
#nurdelischanasuha
#bronchiolitisobliterans
#prayfordelischa
#delischaisafighter
#noreenempire

"When I am afraid, I put my trust in you." Psalm 56:3 #sundayreflection #faith #hope #love #prayer #thankyoujesus

Welcome #thevest - newest addition to The Rhymes household🀣 It's going to take some getting used to... But hopefully it helps with my #bronchiectasis 🌬 #livingwithmachines #coughcoughcough .
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#hillrom #hillromthevest #thevestairwayclearancesystem #coughcough #bronchiolitisobliterans #doublelungtransplant #butstillbreathing #donatelife #donatelifetexas #medicalequipment

Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves; do not merely look out for your own personal interests, but also for the interests of others. - Philippians 2:3-4 #sundayreflection #faith #hope #love #prayer #thankyoujesus

Lord, thank you for this reminder that you are here. Please go the way before me tomorrow and guide the steps and minds of all involved. Please mend those things that have been broken and restore what has been taken. I ask these things in Your Name, Amen #sundayreflection #faith #hope #love #prayer #thankyoujesus

Getting ready for bronchoscopy.>>>1. Wipe down with the sticky, antibacterial wipesπŸ€’βœ”οΈβœ”οΈβœ”οΈ>>>>>2. Put on giant purple gownβœ”οΈβœ”οΈβœ”οΈ>>>>>3. Force Mom to take Traditional Hospital Mirror Selfies with youπŸ”₯πŸ”₯πŸ”₯βœ”οΈβœ”οΈβœ”οΈ>>>>>4. Laugh brilliantly at your small victory (and be happy for your distraction!) βœ”οΈβœ”οΈβœ”οΈπŸ’™πŸ’™πŸ’™

Please keep Hannah in your thoughts and hearts. She has fought AML twice and received a bone marrow transplant last year which has put her in remission again. The transplant caused her to develop GVHD which is where the new donor cells from the transplant don't recognise the body as it's own and begins attacking the body. Hannah's chronic GVHD has caused a lot of inflammation and scarring in her lungs and the damage is irreversible- this disease is called Bronchiolitis Obliterans Disease which is often fatal and a lot of adults who do get this will go on to get a lung transplant. This option however is not possible for Hannah because the GVHD can attack the new lungs. The BOD is usually kept stable by steroids and Hannah is on steroids and inhalers so the disease should not be getting worse. Hannah's doctor explained that some kids who have the same disease as Hannah (GVHD) get steroids and stabilise and some get steroids and get worse. She also has multiple complications from an area of lung that collapsed almost 2 months ago and has gotten no better which means she has a lot of air where there shouldn't be. Her eye has also rapidly swelled and an emergency CT scan showed that the air in the neck has moved to the eye. Hannah's team are all worried that Hannah's BOD is progressing which is not a good sign. They've started her on two more drugs one is only for adults but was FDA approved for severe GVHD and they hope it'll stop her lungs from becoming more damaged and dying. It's not been tried on children but they managed to get this medication for Hannah. However, it has bad side effects and could hurt her liver and unknown side effects. Hannah has a lot of issues and has air still leaking inside her body and it's being stored in her soft tissues making her appear more swollen. All her Doctors have to go on now is what could work and what can slow it down as there is no research for her problems. They are doing and reaching out to some of the best doctors but Hannah's condition is very complicated and she can't be sedated right now as that would increase more pressure etc. They've said Hannah can't afford to get much worse, she still has good oxygen sats but⬇

Saw the absolute best garage sale sign πŸ˜„ #OhMuhGoshBecky

Almost 20minutes without BiPAP & oxygen concentrator ...getting better 😍😍😍
Syukur ya ALLAH...ALHAMDULILLAH

#bronchiolitisobliterans
#postadenovirus
#izzziqriheroibuayahkakak
#syukurselalu
#seindahsabar

Adulting like a pro πŸ’πŸ» #Adulting101

Dear God - being chronically ill has taught me a lot; some lessons have been beautiful and some painful. Thank you for being a patient teacher. Please continue to help me grow in love, grace and compassion and not to become angry despite my situation. Amen #sundayreflection #faith #hope #love #prayer #thankyoujesus

When #LilMama is away at #WyldLife #Camp so you're using your #Time to do some good #Cleaning and you're listening to #OldSchool #Beyonce and trying hard to #ManUp and get through all this #Back #Pain and #Breathing issues. #OhBoy #IThinkICan #Vacuum #CarpetClean #Dancing #LungDisease #BronchiolitisObliterans #ChronicallyChronic

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