Wow 😢🎉🎉

I've got a port. It was placed in March of '18. I have CIDP and dysautonomia and as such, I run IVIG and and fluids (saline). Because of having the port and being able to independently access, care for it and when it is time to do so, push a heparin lock flush and deaccess and as a result I'm able to independently infuse the IVIG and saline. I've also had three pretty bad kidney infections that required 3 weeks of antibiotics each time and due to me having a port and have a pump at home, after the first few days making sure that the treatment was going in the right direction (bacteria getting killed off) the hospital sent orders to my infusion pharmacy that supplies all of the infusion supplies (tubing, antibiotics and bags of fluids) and port care supplies (saline flushes, heparin lock flushes, sterile dressing kits and huber needles) and I was discharged after my roommate called me to tell me that he received the delivery. Granted, I had to return to the hospital twice a week for labs and UAs for the time remaining on antibiotics to make sure that everything was good and kosher for my body and that none of my body systems were bugging out.

WHY DID U PAINT ON THE *ANTIQUE* LOCKET U JUST WASTED A PERFECTLY GOOD LOCKET YOU COULD’VE ATLEAST PUT IN A SHEET OF BLACK CONSTRUCTION PAPER IN OR SOMETHING

I have a PICC line right now I have osteomyelitis in my 5th metatarsal in my right foot with a pathologic fracture as well I like my PICC line other than the fact it itches ugh

Thank you so much for your inspiration🎉My daughter who’s 2 is getting Trikafka next week!!! Yaaay🎉

I have Cf how can we talk to other cf patients

A friend of mine had one, and had a horrible experience with it that landed him in the ER. So I opted not to get one. I’m ok with a regular IV: if it gets damaged or yanked by accident, I know I can remove it easily without dying. I’m getting IV antibiotics daily now, for about 6 weeks. I was having this last year and no one offered me a PICC line even though one nurse insists I was - but I’d have googled it then. Luckily I’ve not had any problems with the IVs, it’s changed once a week. I get blood work once a week and that’s been okay too.

Thank you so much for this video! Understanding the process helped me today while I had my first PICC inserted.

Awesome video. I appreciate the info. Thanks

This video is beyond helpful! Thanks much! Btw, you're Dua Lipa's doppelganger.😊

Very valid feelings. I don't have cistic fibrosis but can relate 100% in my own way with my own chronic illness

My son takes the medicine Kenneth McGrath ( Danger )

Hello everyone! So my mom was advised she will have blood drawn every 6 hours to monitor her blood levels due to an infection. She was released from hospital and temporarily admitted for three weeks to rehab. During her time at rehab no one used the pic line to give her meds, her meds now will be given orally, crushed in her applesauce. Her blood during her stay there was drawn only once. No one cleaned it or changed her dressing or advised me how to clean or care for her pic line. So, she is now home and it’s been a month no one has followed up with mom regarding home care. Her insurance had difficulty finding her a doctor to visit us. I’m going to follow up with them and see what is going on. 😊

i am getting a picc line on wen

I like you.. I like your attitude You have the ability to make a person feel very comfortable about having to get this done also helping to reassure someone who's had this picc placed in their body.. loved your presentation God bless you 🙏 ❤️

My mom got a picc line and I ended up being ghe one infusing the medication into her vein I was panicking the first 2 times but now I do it without any issues or anxiety It’s quick The only problem is the picc line got clogged and it took a trip to the ER to clear that out 😢

Well done. Love your positive attitude. Very informative. Wishing you good health.

Thank you thank you thank you THANK YOU! This beat video of its kind on KZfaq! You’ve made a huge difference in many peoples lives!

i have spina bifida and i have a very harsh PTSD response with needles so i have to be completely sedated before they stick me with needles, ive had multiple picc lines in and im allergic to the actual device they put on the keep the picc in my arm

I love this. I do this as a mummy

Good riddance

This is rendering hair in a kind of cartoonish way. It works for that.

Half way listening to this video. I don't know if you check your old channel, but I wanted to share my experience that is similar to what you, and possibly many other CFers, experienced pre and post Trikafta. My channel goes to some detail on my past condition, but I had bronchilitous obliterans. I don't remember the exact details but I believed it was obstructed airways caused by inflammation. I had that condition since I was less than a year old. At the age of 25, I had a double lung transplant, and if BO is similar in experience to CF, being able to breathe that full air without coughing or wheezing was amazing. I finally could breathe efficiently. Some of the experiences you were describing in this video mirrors my own. Your husband being tired out at Disneyworld? My brother and I were at a mountainous area 12,000 feet above sea level. Normally, I would be exhausted or outright not be there, pre-transplant. Post-transplant, I was fine. Some dizziness, but fine. My brother, on the other hand? Out of breath and struggling. And it was amazing 3 months after transplant. I was cleaning my room and I was getting many things done in the hour and not once did I feel tired or out of breath. If it was past me, it would have taken me a whole month to clean my room. But at the 3 month post mark, it only took me a day and a half. I don't know if I can say I have a new identity like you did. I mean, I'm taking a boat load of drugs because of the transplant, but as of now, I feel like I'm becoming who I always wanted to be. Though I will say, past me and current me are radically different.

Sending you love. My daughter was diagnose with CF at 3 months. Your video brings hope to many CF patient. Your right because of trikafta my daughter has a fighting chance. You are going through a lot i hope you understand that it is ok to fear about the future. Death has always been glooming on CF patients and their families the change is worth it. However, understand that if you don't have CF you can always die from random things like cancers, motor accidents, other illness such as covid. Try your best to live in the moment and plan for the future cause we know its better to fight to reach our best life with health and longevity. Even if we might meet our end sooner then planned we still gave it a shot and we did the best we could. Im sorry that living with CF traumatized your life. You are more than your illness you can now live your life as your unique you. Sending you lots of ❤❤❤. Thanks for being the first few who open doors for CF patients. Be a speaker or CF advocate there are still many more variant mutation CFTR gene that does not qualify for trikafta. So more awareness and funding is still needed to battle this illness. Your still strong 💪 stay positive and its ok to have those days where your in disbelief that you have a chance of hope.

My pic line lasted 3 weeks. I had an allergic reaction to all plasters they tried. The tube ended up exiting by itself os had it taken out. I had a port put in a week ago. Little uncomfortable for a few days but hoping it'll work for my chemo and bloods. All that poking needles in me has left me so bruised I look abused 😅.

my doters my name is persephone

Lmao, this was the book Top g talked about

the drawing-telling concept is literal therapy.

You are super amazing. I loved your video, thank you!!!

I'm very scared I keep having infections in my feet in the bones. An is called osteomyelitis and I have had three infections now and the bones are disappearing from the bacteria eating it away and Ive never gotten a PICC line because it scares me. Rhank you so much for showing me this ive been very very scared to do this. Thank you for showing me. Rhis made me comfortable that i can do it

So... you use them for introspection? For perception? Common, and not really complicated. Glad it helps.

This medication is totally unaffordable, it is ridiculous paying $330k a year. Who can afford this? Why is it even legal for them to charge such a ridiculous amount?

Super rad 🤙🏼

my picc line was installed last week. Now there is painful pressure at collar bone area and under.

Hi Monique, thank you for sharing this. Listening to your comments certainly brought a lot of thoughts and allowed me to reflect on my experience with Trikafta in ways I had not thought about before. Everything you said is spot on... Love the "Mind F@ck" comment about planning to live a certain length of time and then it all changing. I was told I would be lucky to live past high school and when I graduated I thought to myself about how that wasn't supposed to happen, now what? The life expectancy date kept extending and I realized I better get serious about planning a future. It has ben an unexpected blessing and I'll be turning 46 next month. I like you started Trikafta in November 2019 (shortly after it was approved). I was surely headed toward a lung transplant, or worse when the drug was finally approved. I knew it was going to be a miracle drug because I was following it closely for years, my family and I helped raise money for the foundation and I participated in every study I could qualify for leading up to its eventual release. Now, all that is in the past, and I can breath. No more coughing, tune-ups, no more fears of my life ending soon. A few days ago I raced, full speed against my youngest and oldest daughter down a very long hallway without coughing (I reflected back on when I taught my girls to ride a bike and how incredibly difficult that was for me) in a hotel in Washington DC where my oldest daughter was invited to participate with the CF Foundation and tell her story on Capitol Hill where she met with Senators, congressmen, and staff. She was fighting for us, for those with CF who can't take Trikafta. What a blessing, God is Good and he will provide. Stay strong, keep talking about your feelings and emotions and you will find your new you, your new life as a recovering CF lady. God Bless You.

Thank you so much for sharing 💖💖💖💖💖

Apparently, you have to study the human body with a pencil from the beginning to make good progress.

You just basically word for word expressed my thoughts! Thank you!

South Africa havent got Trikafta😢😢😢

Thank you so much for helping calm me down. I am getting my first picc line in 6 days and was super scared. I do feel so much better about it now. Continue helping like you did for me.

Nice art drawings awesome 😎👍💯

What did you paint the locket with?

My younger sister died of CF in 2001, she was only 12 years old. CF is such a horrible genetic condition. I'm so happy for you and sad it was too late for my little sister.

Wonderful story and thank you for sharing. I'm really happy you have found your place in life and are making the most of it. More power to you, all the best.

AI will very soon blow you all away anyway. Train for a real career instead.

You're a wonder woman! <3 Thanks for helping me with this video

Easy for you to give tips, your art is so good

Thank you for the great information! I'm getting a PICC line next week and didn't know anything about it.

Heparin injections burn does in burn when administered through the PICC line?

How to get a acess