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I do have liver disease too and am being evaluated for a liver transplant. I don't have issues with clotting so maybe that is a big determining factor. I'm always happy to help since my CF is very much on the weird side lol

So I am in a gray area when it comes to hemoptysis, I don't bleed enough for embolization yet, but still have frequent issues with it. I was prescribed by my cf doctor Tranexamic Acid to take when I have one. It's a course of a 5 day tablet you take 3 times a day. I wonder if maybe adding this...

It will be a blood test for a full genetic test. With having cystic fibrosis you unfortunately become a human "pincushion". Give him lots of love and something to look forward to afterwards! I hope you get answers soon and keep us updated so we can help you in anyway we can.

Has anyone had a liver transplant way before they needed a lung transplant? I'm curious as to how this works as I know liver and lungs need to come from same donor

I used to do 3 weeks on IV Tobi inpatient and sometimes up to 4 weeks on home IVs. Can no longer use it due to hearing loss.

Cleveland Clinic...It's always been the top or second top hospital in the world

I really don't know what to tell you. I think it's possible you're a carrier of CF and carriers can have symptoms of CF. CF requires either two heterozygous or homozygous mutations. There have been some CFers who have had negative sweat tests but were still diagnosed with it through genetic...

I will be flying out of town while on IV meds and I've never flown with them before. Wondering what tips you guys have to getting though security and what not. I do have TSA Pre-Check so that might help too. Thanks!

I don't remember who I went though to file for disability, however I remember my social worker saying it's common to get denied on the first attempt and sometimes the second. They usually want more documentation and what not. Keep at it.

So I have to get all the invasive testing out of the way for my transplant stuff. While really I'm still not sick enough to be listed, my transplant doctor wants this information for my chart for a baseline type of thing. This test however, has me beyond nervous. I have no idea what to expect...

Get a baby bottle sterilizer.

Talk to either your doctor or social worker at the clinic and let them know you want to get her on it when it becomes available. Vertex usually sends forms to CF clinic to have us fill out to get the process started with insurance ahead of time. So I'd ask to be contacted when that gets in.

The triple combo med isn't out to patients yet. They are still deciding which triple combo med to put out. My doctor told me they should be out for patients towards the end of 2019.

So I think they might keep these older ones around after the triple's come out. The reason is my doctor has told me that some patients can't handle the full dose of the ones that are out now and some are on half doses. There is a good chance the triple combo ones might be too strong for them to...

The bleeding happens because of increased heart rate, air doesn't make a difference. I have never been able to work out outside in Ohio's cold winter weather...lol...you're amazing for that!!

Having my first port I was asked where I wanted it. Since I have a fear of being stabbed in the chest, I opted for the arm. They do them in arms, legs, chest, sides. You just have to know to ask. Most people aren't given the option but if you bring it up they will. It's a perfect location in my...

You need a port. It's so much nicer and easier come IV time. Basically a port is an implanted device that feeds into a major vein that goes into your heart. It's about the size of a quarter and has a plastic dome on top. It stays in place so the process of finding a vein each time isn't...

So I'm having issues with coughing up blood anytime I get my heart rate up. It's annoying and some of the most basic exercises set it off. I can't lay on my back at all and doing yoga even makes it happen...even the most low key poses. My doctors have looked at the vein that is causing it and...

Unvaccinated from what? That might help us to know that

Anything in IT/ computer related...I didn't listen when my dad told me this was the route to go...wish I would have.