My Cystic Fibrosis Story | Palliative but positive

Рет қаралды 1,669

Ай бұрын

I thought I would share my story so far and what lead me to being more unwell/in my cf decline, I have always been fairly quiet about my health other than a few updates to family but over the last 2 years I’ve decided to use my social media platforms as a place to raise awareness for the difficulties of cf that perhaps people still aren’t aware of or believe that new medications are a cure, when in reality so many of us are still battling on the same way we always have.
If you relate to my situation or just want to follow along to support my cause I’d appreciate it if you could drop me a sub, I hope to put out more similar content to this as well as weekly vlogs. Thanks so much!
Jet xx

Пікірлер: 16

@cindyhoomalu1566 9 күн бұрын

Hey, pretty lady! I just want to say that your attitude is amazing! I was diagnosed at age 2 in Germany (US Army dad) and just turned 47. I have a 13 year old son, and the diabetes part was my biggest complication during pregnancy. I had several bad years before pregnancy, but after that I have been surprisingly pretty well. Sending you love, prayers, good juju, whatever you believe in to get yourself better!!!

@annacooper1299 Ай бұрын

TPN doesn't always mean end of life. I was on TPN for 4 years and have just recently had just enough improvement in my Gastroparesis that I am back on tube feeds. TPN gave me my life back so don't wait till you are so much worse when it won't give you as much improvement

@lowenplas Ай бұрын

Oh yeah I understand that however with me personally this is the only time they’re willing to use it. I know loads of people who have been on it temporarily or for long term, they just aren’t willing to with me unless I’m out of options completely

@annacooper1299 Ай бұрын

@@lowenplas okay I just know before I started on TPN I was told it was only for the last chance when someone is about to die to give them just a little more time. I am glad you know that it isn’t a death sentence but itself

@guardiansanimalrescuestate7289 Ай бұрын

Yes as a nurse and patient with gastroparesi, I have TPN and a micky button for tube feeds. My weight goes down into the 70’s.

@donnanorris458 Ай бұрын

Since I have known you, You are and have always been an awesome inspirational human x❤❤❤

@bettyconnearney7943 Ай бұрын

Good for you!! Just found your vlog. Happy to hear your still living your best life!! You have been thru the mill as they say in USA. Means you have been thru hell!! You also have a great attitude!! I pray things will get better in the future!! My prayers and hugs go out to you!!❤ 🙏

@lowenplas Ай бұрын

Thanks so much! 😊

@LeviLurgyMusic Ай бұрын

Sup Jet! Long Time no speaky, sad hearing about this, I always know you struggled with this. It's cool to see you still Youtubing!✌

@Murrrrrrp Ай бұрын

Just found you (and subscribed). Sending you love from the U.S. ❤

@lowenplas Ай бұрын

Thank you so much! ☺️

@anikabaddeleyrollingbackwa7341 Ай бұрын

Have you heard about the gastric pacemaker? I wondered if it might be an option if your bowel motility declines more I have cerebral palsy and have had dismotility for years and had a resection due to blockage about 8 years ago . I wasn’t a candidate for the pacemaker and I am experiencing problems with the remaining bowel I have. I went to a school for children with medical needs. We had several kids with CF and one of my closest friends passed away when she was 13. I am so glad that life expectancy has improved and I was happy and sad about kaftro coming along as I wish that my friends had lived long enough to try it if you had lung transplants some lived a few years and one lived over a decade. I know transplant with CF is very challenging and the experiences I can talk about or from many years ago now. I am about to go and watch your video about Kaftrio as I’ve seen accounts of some people who cannot take it also and I think it was build a miracle for everybody and it must be very difficult in that case. I hope you manage to get the help you need.