Moon face is coming along nicely😂🌚 I've had 2 rounds of the high dose IV steroids and due my last one this afternoon then I'm done 😉. It's amazing how quick the fluid builds up on your face. Hey ho it's a small price to pay to be here and blessed with another day.
Cabin fever is setting in a bit but ofcourse a day in the life of Karen always pops up some drama.😂😥 Having a shower and the cannula in my hand comes out. Shampoo in my eyes, blood splurting out all over the walls, shower curtain, floor, toilet and sink. Slipping and sliding to get a towel to stop the bleeding,which it did immediately. When I wiped my eyes and looked around, the shower scene from psycho looked mild 😂😂😂 the poor cleaner had a great time and the shower curtain had to be replaced🤤 now I'm waiting to get another cannula put in for the last IV, typical when I only had 1 left to go! Going to clinic tomorrow to get last tests done then hopefully discharged 😁🤞🤗 here's to the rest of the day being less dramatic and involving less blood. 🤣 x #moonface#posttransplant#angeldonor#mylungstory#organdonor#doublelungtransplant#raisingawareness#lungtransplant#organdonation#justbreathe#oxygen#chronicillness#thankful#illness#signupthenspeakup#yesidonate#recycleyourself#pulmonaryhypertension
Cystic fibrosis a genetic Terminal illness.. 2x bilateral lung transplants.. after my younger brother had fallen and passed away last yr and become victim to same illness like alot of my other transplants friends last yr, my body was bombarded by influenzas, a superbug, fungal infection which would kill most normal people let alone immunosuppressed human.
3 months of in and out isolation... multiple respitory failures just escaping the ventilator. Imported drugs from the US and day by day battle with some of the best medical teams on the planet my legion of army support of family close friends and wife by my side.. today is the day I take my first steps 😍🙏🏼❤️ Whatch this space 😎
Hit me once... make it a good fucking hit and make sure I don’t get back up.
Cause if I do expect the unexpected 👊🏼 #rehabillitation#cysticfibrosis#doublelungtransplant#determination#resilliance#inspiration
63 27712 hours ago
“Strength grows in the moments that you think you can’t go on, but you keep going anyway.” 💪🏼💜🌹|| IV antibiotics became my life. Every time I would turn around, I’d be ready for another round. One of the reasons I was listed a bit early was bc of the how often I was needing antibiotics. I never really absorbed oral antibiotics, so we ended up doing IV. Thankfully having my port was very helpful. I started needing IV antibiotics every 1-3 months when I was listed and ended up at every 3 weeks. As my CF progressed, so did the infections. We realized that when one infection strain would get under control, another one would start to thrive. The infections became so frequent that they became resistant to most antibiotics. We were running out of options which was very scary. Unfortunately I am highly allergic to penicillins, a very important class of drugs. One time we did a process called desensitization to Zosyn, an antibiotic in the penicillin family. This required being admitted into the ICU & giving me the drug little bits at a time until it was at the prescribed dose. This was scary seeing how allergic I am to penicillins, but I didn’t react. This was good but my resistance to drugs that I could use was becoming a big issue as I became sicker. The drs worked around the clock to make sure I stayed healthy enough for lungs. We would even put me on antibiotics that my culture was resistant to bc it seemed to help. The last infection I had, we were terrified I wouldn’t make it. Thankfully the call came just in time 💜
If this is something you’re going through, please don’t give up. You got this 💜 Had I given up, I wouldn’t be where I am today!
I fought not only for myself, but for my family & friends. I could see that it wasn’t just taking a toll on me, mentally & physically, but it was raining on their emotions, as well. They always talk about how “WE” have cystic fibrosis bc we do. As much as I was keeping myself going, they were & are my driving force for mostly everything I do. So going into the hospital wasn’t all that bad when I had them by my side. They knew that if they couldn’t take away my pain, they could help me stay sane & happy.
18 51714 hours ago
REAL TALK. I don’t often talk about the horrible things I’ve gone through because of CF. But today I am. • Today I laid on an exam table while a doctor stuck a 5 inch needle into my hip. Yea, I was numbed up a bit with lidocaine but I still felt every time he had to push hard through scar and other tissue to get to my joint & then move the needle around to get to the fluid pocket. It f***ing hurt! Cystic fibrosis has caused me to be in excruciating pain & discomfort many many times. More times than I can even count. From intestinal surgeries, to transplant surgery, hip surgeries & sinus surgeries. Central line placements. Being stuck 5 times just to get an IV because my veins are shot. And intestinal blockages. On top of the surgeries & procedures comes side effects from medications, nausea and lost time with friends. To name a few. Just today on my way home I started to feel extremely nauseous while driving and had to throw up in a gallon ziplock bag at a stop light...I was stuck in traffic and couldn’t pull over in time so it was either that or my car. None of it’s fun. I wouldn’t wish the pain or bad experiences I’ve endured on my worst enemy. But the reality of it is I endure all of the pain, discomfort and problems that come with CF because I want to continue to fight (for myself, my family, my friends, and others with CF) and continue to live the life I’ve built for myself. I’m proud of what I’ve done DESPITE cystic fibrosis. I’m more than CF. But it has made me into me, has brought amazing people into my life I would have never met otherwise, has taught me to not take things too seriously, and has made me know the true meaning of LIVING life. And even though I absolutely hate what it does to my body, I wouldn’t be me without it. 💜 #realtalk#thetruth#thisisme
Du wirst dich nur an mich erinnern, wenn du müde bist von all dem um dich herum und deine Welt auseinander fällt. Wenn du anfängst darüber nachzudenken was wirklich wichtig ist im Leben. Wenn du beginnst den Dingen einen Wert zu geben die deine Eltern dir mal erzählt haben oder deine wahren Freunde dir geraten haben, nämlich wie du Menschen wie mich in deinem Leben behältst und das Menschen wie ich, dir wahrscheinlich nur einmal im Leben begegnen. Aber du hast dich für das kurzfristige Glück entschieden. Du hast die sofortige Befriedigung gewählt. Du bist in die Falle gefallen, die dein Ego dir gestellt hat…
Ich bin der eine Mensch, an den du dich erinnerst, wenn es zu spät ist. Nachdem ich entschieden habe, dass mein Herz nicht immer dein sein wird. Ich bin der Mensch, an den du dich erinnerst, wenn du merkst dass ich nicht wieder auf deine Rückkehr gewartet habe…
84 533219 hours ago
This abnormally warm day in February (currently 78 in the Washington, DC area) has me wishing for summer! Can’t wait for all of the adventures in store for summer 2018! ☀️☀️☀️ #summer#throwbacks#iwantsummer
On this weeks podcast we continue our path down the windy dark catfish river. What Rima and I thought at first might have only happened to us, being catfished by an evil woman creating fictional family members who had CF, was sadly not the case. After our Episode 6 podcast a few weeks ago we were contacted by a member of the CF community in the UK who had not only been in contact with this person, but, met her in the flesh. @hollyrosanna a strong, beautiful, vibrant, funny, caring and double lung transplant recipient recounts her associations and "friendship" with Katy, the catfish succubus. Listen to her melodic and hypnotizing British accent as she paints quite the vivid and true story of how Katy started to embody a catfish. Holly, unbeknownst to her gave Katy pivotal and crucial information that would inspire her to create fictional personas, like, Makayla who "had" CF. We teamed up together across the Atlantic Ocean to bring more light to this serious issue we believe has not been talked about enough in the chronic illness communities. We hope to educate and spread awareness; follow your gut and don't be afraid to ask questions. If people have nothing to hide, then they should have no problem answering truthfully. I continue with my mantra from the last episode, eat catfish don't be eaten by them! Listen to this podcast on iTunes, link in out profile or on our blog. Also, you can subscribe so you’ll know when we put up new episodes. For android users there’s an app called player fm, that allows you to listen to podcasts.
All five appointments done for the week and passed with flying colors 😬 SO ready to be back home in my bed with my pup. 🐶
First thing Monday morning was my normal clinic appointment. We drew my normal labs in addition to about 15-17 viles of pre-transplant blood draws, took a pretty picture of my lungs with chest X-Ray, and blew all my air into the pft machine. We then met with my MD, NP, dietician and a ((new-to-me)) pre transplant coordinator.
Since we’ve been through this before, it was a lot of repeat information with loads of new information mixed in. My previous lungs came from living donors; my new ones will come from a cadever body. Since my last transplant was almost 15 years ago and at a different hospital, their guidelines/procedures are a bit different but nothing I can’t adjust to! 😷💪🏼 Weight is stable at 88lbs and I’m determined to get back up to 95lbs.. give me all the food! 🍕🍔🌮 Lung function did decrease a small amount from 28% to 26% but that’s almost expected at this point.
Social worker appointment was easy peezy lemon squeezy 🍋 done and done.
My two photopheresis treatments went SO smooth. The past few times, they had trouble accessing my veins sending me home without treatment. Because of that, I got a vortex port placed in my chest 3 weeks ago and it worked beautifully. Taking the treatment time from 6/7 hours to less than 2 hours! Phew!
Lastly, diabetes has not affected my eyes! The Doctor said my eyes were the healthiest he’s seen all week. 👀 gotta celebrate the small victories. 😂
Next stop at Stanford: PRE-TRANSPLANT testing. 🙏🏼🙌🏼 So excited to finally have answers instead of constantly wondering about the future.
Caregiver 101: Active: Staying active while waiting for a double lung transplant is key, or at least we think it is to staying healthy; physically and mentally. You can easily find yourself falling down a dark rabbit hole while waiting for the call. Realizing you're waiting for someone else's ultimate and tragic loss can be a mind fuck. Snapping yourself out of this thought process can be difficult but staying active and busy helps a lot! It's no secret that while we were waiting, Rima and I did A LOT of activities. Way more than her medical team was comfortable with, but hey, look at her now! We showed them! Stay active, make plans, live your life even if you're constantly checking your phone and waiting for THAT call. Chase some waterfalls even when they're frozen.
#lungstoryshort#cysticfibrosis#cfawareness#65roses#fufc#cfirl#doublelungtransplant#posttransplant#cff#caregiver#sister#live#strength#happy#explore#advice#caregiver # minneapolis #waterfalls
Ich glaube wir waren einer für den anderen eine Lektion. Wir wurden vom Schicksal zusammengebracht um einander zu zeigen wozu wir fähig sind. Du hast gelernt dass du über deine vergangene Zeit hinweg kommen kannst. Ich habe gelernt dass ich doch in der Lage war jemandem mein Herz zu schenken und zu vertrauen. Und vielleicht habe ich auch gelernt das Liebe nicht immer Sonnenschein ist. Ich glaube, ich würde mich immer wieder Hals über Kopf in dich verlieben. Nicht in die Version von dir, die du der Welt gezeigt hast, sondern deine wahre.
Die Art von dir, die Unsicherheiten hatte, die du vorgabst nicht zu haben.
Aber ich weiß auch du würdest immer mit meinem Herzen spielen, vielleicht nicht absichtlich, sondern weil du nicht weißt was du wirklich willst und deine Unentschlossenheit würde mich verletzen…
🔆“She was powerful, not because she wasn’t scared but because she went on so strongly, despite the fear” -Atticus🔆 || Going into the hospital 🏥 all my life became the norm. I was in & out in elementary school, middle school, high school, and college. I was used to the “tune ups” aka going in for a routine round of antibiotics 💉. However when my health took a turn for the worst, scarring up my lungs to the point of being listed, the infections became scarier and scarier😓😰. I went from needing IV antibiotics every 6 months to 3-4 months then, at the very end, every 3-4 weeks. All i could think was thank God for my port & life saving antibiotics. The hospital &ER became my new second home 🏡 . The nurses, respiratory therapists, & hospital based infectious disease doctors 👨🏻⚕️👩🏻⚕️ knew me so well that they became my family. The dietician’s would send up a bowl of salt packets & my favorite food dishes in the fridge🍽 bc they saw my name on admission list. I went from being able to walk around the hospital (of course with a mask 😷) to not being able to walk to my bathroom 🚽 , which was barely 5 feet from my hospital bed. I was scared but I told myself that I am a badass 💪🏼, nothing can bring me down, I WILL GET LUNGS!💁🏼♀️
Thankfully I was able to get through each infection. Although most of the time I was laid up in bed, coughing to the point I puked (multiple times a day), relying on IV medications to keep me alive to see the day I got lungs, I never gave up. Most people tell me that they would give up had they been in my position. They would not be able to fight like I did. I think about how I did it...how did I push through the pain, coughing, shortness of breath, and the anxiety? My answer is I let go & let God. I surrounded myself with the most positive people I could and smiled😃, laughed😂, & chose to embrace what I had. I knew there was a plan for me & when the right Lungs were going to come, they would. So my life was stuck in the ER, hospital rooms, & my room for a while, but you’d never see a smile off my face.🙅🏼♀️
What makes you feel most at home when you’re admitted? I always would bring my bedding & pillows💜
One year ago I started to feel short of breath.
One year ago I couldn't shower by myself.
One year ago I checked my lung function and it had dropped 40% overnight.
One year ago I was diagnosed with an atrial flutter.
One year ago I was told I was in rejection.
One year ago I started living in a hospital.
One year ago the nightmare started all over again.
One year ago I needed a second double lung transplant.
In one year, I have had my heart stopped and shocked back into rhythm.
In one year, I have lived through a second double lung transplant.
In one year, my mental health has taken a turn for the better.
In one year, my life started all over again.
I am so incredibly grateful for both my donors and those who stuck around to watch me fight this fight.
As it comes up to my 9 month post transplant follow up, I am extremely happy to say my lungs are doing great!
One year ago, my life changed forever, for the better.
4 weeks post transplant can you believe it?! I am so incredibly lucky and fortunate that my recovery has been so quick and relatively issue free. I had my first bronchoscopy and biopsy yesterday. They give you some medication that relaxes you and makes you a little sleepy but you're still technically awake. They put numbing spray up your nose and in your throat to make it more comfortable when they pass the camera and probe down into your lungs (not the nicest procedure!). I remember looking at the screen and seeing him take little snippets for the biopsies and before I knew it was over. I was wheeled back to my room for the evening/night.
Last night was the first night I actually cried for me. I cried because of what's happened to me, why it happened, how it happened. I felt so sad for what me and my family have went through. I've shed many tears of frustration,happiness and pain throughout all this and just pushed through because that's what I needed to do. This was different because I'm feeling so great and all of a sudden I let myself be still and silent, I just let it all out. The realisation that my worries have went from pre transplant of desperately wanting to stay alive to post transplant worries of staying alive but in a totally different way now was huge. I know with time i will get used to it all and it will be less raw for me but right now it's hard and that's ok.
The drs came around this morning and told me the result of the biopsy showed I have acute rejection. The word rejection is stupid and scary but anyhow it's not as bad as what you think. They need to come up with a new word or term to describe it as it sounds so final.... rejection, over, out...when in reality it's not that at all and can be fixed. I cried and was scared but with alot of talking and explaining I'm fine. Every patient experiences an episode of 'rejection'. It's loosely used for varying degrees of rejection or simply that my immune system is too good in a way and giving my lungs a hard time. It was a matter of when not how, as I've said in previous posts. It's easily treated with high IV steroids and I will have to stay in isolation for 3 days. Cont in comments...
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A lil appreciation post.. being One of only few in history to survive 2 bilateral lung transplants and currently battling another war... Truth needs to be told that no war is won alone.
Never judge a book by its cover. Hard exteriors with the kindest hearts around. Or soft exterior but hard as stone with an ambundance of strength and stamina all of these special individuals plus my medical team have helped me 24/7 days a wk for months now battling this war against my body. day by day hour by hour at the bedside sleeping, moving, bathing, feeding me. Everything a grown man should be able to do whom no longer can crippled by a fatal infection. My grattitude for these people goes beyond what I could ever repay. I am truely blessed to have this support team with me to fight this to the end.. 👊🏼🖤 gloves ain’t hung yet... 🙏🏼 I love you all no matter which way this battle ends ❤️❤️ @clancydenham@jess_silva@50shadesofink@misskatiestevens@therealdionmonkivitch@miz_kirstin@rach_luther@kaylee_fitzgerald89#cysticfibrosis#doublelungtransplant#respect#resilliance#family
21 2272 days ago
I’m not laughing... I’m coughing my lungs out, hacking up nasty, green, bloody shit. My sweet fiancé, Jason, took this pic because it’s real. With a gross half filled spit up bucket on the other side he was there. He has been the best trouper the whole way through. This man stuck by my side and slept with me every night, literally fighting snow storms on his way to and from getting to me, then back to work every single day. This big man slept on the tiniest most uncomfortable couch I’ve ever seen in my life just to make sure I was loved and not alone. He is the reason I healed. I could not have done it with out him, the love of my life, the answers to my prayers.... my Jason situation.... the reason I’m feeling as great as I do right now! He blew my mind the moment I laid eyes on him and continues to overwhelm me with love. I’m the luckiest.
6 532 days ago
Everyone, please keep @fight2breathe in your thoughts! She’s having a hard time right now, she really needs us to think good and positive thoughts for her! Looks like her brother has been the one doing the updates. Just from what I’ve seen, he seems to be a great brother who is always by her side. I can’t imagine what her family is feeling and thinking right now, but I know if her brother is asking us to keep her in our thoughts, we need to be doing that.
You got this Cyster! I’m pulling for you. You’re one bad ass fighter and you’ve got this! I know it’s hard and you must be so scared, that’s ok! You can feel whatever you need to feel right now because for those bad thoughts you’re thinking, I’m thinking 1 million good ones. You are STRONG! You can do this! •
Since my transplant I’ve lost touch with some friends. But I’ve also gotten back in touch with friends. Some from college, high school & even as far back as elementary school! It’s been fun grabbing dinner with people I haven’t seen in years & catching up on life! To see where each other is in their life. How much they’ve grown or changed. So today I celebrate everyone I’ve gotten back in touch with over the last year and a half! And I hope to reconnect with more people!! 💜 #friendship#backintouch#lifechanges
14 5042 days ago
Had my 10 month post transplant appointment today. Everything was good and my creatnine is down to 1.3. Still too high but it's better than it's been in months. My PFT was 95% which is the highest it's been. Now I only have to see the transplant team every 6 weeks instead of every month ▪
#DoubleLungTransplant#DonateLife#PulmonaryHypertension#10Months !!! ♻️♻️♻️
“That breath you just took...that’s a gift” 💜|| Lately I’ve been reminiscing about the past year. I’m thriving and I’ve always been an optimistic person, but before transplant really tested my mind & body.
“Why did you get listed & when did you know the time was right?”To answer this, I need to share life before getting listed. I was going in for “tune ups” every 6 months when I was in my 18-20 years. These were like clock work, every March & August I’d visit the hospital for a 2 week dose of antibiotics to get myself healthy. I always felt like superwoman afterward. When I was 21, I caught an infection that plummeted my lung function. I remember having to crawl on the floor bc I couldn’t find the breath to stand. My dad rushed me to my doctor, whom then admitted me. Needing oxygen for the first time terrified me. I was able to bounce back to a certain point, but was never the same. A couple years went by, I was dancing in college & going after my degree. My lung function was steadily progressing. I was requiring IV meds every 3-4 months rather than 6. One day in the beginning of May, before my 24th birthday, I was told I needed to be evaluated for transplant. Saying this was shocking & devastating is an understatement. By myself in the cold, white exam room, I balled my eyes out. I was very hesitant to go through with the evaluation. I knew NOTHING about transplant. I talked to someone who had been through it & got the encouragement to go through w/ it. The testing seemed to never end.
Once testing was done, I went to Stanford to meet the team. These appointments were overwhelming. I ultimately decided that transplant was something I wanted bc I felt that I deserved to have a quality of life, to breathe, live life & I wasn’t a quitter. I decided to fight. Reasons why they decided to list me:
♻️My FEV1 was <30% after many IV antibiotics attempts
♻️Exacerbations became more frequent
♻️they did not want me to become too sick ♻️My stature is very tiny, I’m 5’ & 94lbs, it takes longer to find small lungs.
With these reasons, On March 12th, 2014, I got the call saying “Tiffany, you’re now listed for a double lung transplant” & after that my life changed forever
23 5372 days ago
Over the weekend, our advocate @hollyrosanna celebrated her 3rd transplantiversary. She said “Today, I celebrated 3 years since I received the gift of life, a double lung transplant.I spent the afternoon in the glorious sunshine on Brighton pier with 3 very special friends who have all also got cystic fibrosis and double lung transplants. We had so much fun on the rides, in the arcade, and eating treats. It was an afternoon filled with love and laughter. Today has been utterly perfect and I am beaming from ear to ear, totally in love with life. This evening, I am thinking of my donor family on what must be an extremely hard and emotional day for them as they mark 3 years without their beloved family member. Words will never be enough to describe how eternally grateful I am to both my donor and her family for agreeing to give the gift of life. They are my heroes forever and always.
I feel like I’ve been hiding this week. But really I’ve been in Seattle doing week one of two for my lungs and liver transplants. The first day was the roughest as I had to have two probes stuck up my nose and down my throat to test the acid and PH levels in my stomach. (Acid reflux can be a big deal after transplant). But once that was done everything else seemed easy. I did meet with the liver surgeon, touched base with the anesthesia team, sat through both the liver transplant class and the lung class, and had an echocardiogram and CT scan. All of which are “easy” but just take a lot of time. The days have been full but somehow I’ve managed to keep my cool, even when they have described in detail the risks of transplant, what the surgery will entail, how many iVs and tubes I will have hooked up to me, what the incisions will look like and what kind of medications I’ll be on. There are lots of gory details. They make sure you know the significance of what is ahead. But they also stress that this is what they do and they are good at it, which was and is comforting. It’s a lot of course, perhaps it hasn’t all hit me again. But for I’m grateful that for whatever reason it doesn’t feel like ten thousand pounds of doom is sitting on my bed anymore. The time with the people with me has been rich and fun. We’ve managed to keep our wits about us and enjoy week one of many more to come. We got this, and I’m covered. Thanks be to God. #cysticfibrosis#doublelungtransplant#beherenow
When you are married & get a double lung transplant- it’s team sport. My parents gave us a surprise gift of a dinner out at our fav place tonight to celebrate the WE in this experience and we certainly did. For every “not sure we can do this” moment - whether at the gym today with weights or as we talk about careers tonight, Dan is the first one to remind me of what we have already done and first steps are the hardest, but necessary. Great night - thanks Mom and Dad.... exciting new steps thank you Danny.... great journey- thank you, God! #bessettedaily2017#cflife#cfwife#doublelungtransplant
4 591:33 AM Dec 4, 2017
Happy 2nd Life Day to this beautiful human being ❤️ you are the strongest, bravest and loveliest person I know. You made having a double lung transplant and bone marrow transplant look easy with your smile and refusal to let your circumstances get you down. I am proud to be your mother. Love you bub. #bonemarrowtransplant#scid#donateyourorgans#donatelife#doublelungtransplant