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I am 2 years and almost 3 months out, and I still have full medicaid/medicare as I had before surgery. But it does vary state to state. I am in Montana if this helps. Montana Medicaid Travel still comps for trips to Seattle for check-ups.

I would have to agree with you kenna2 pretty much every health related subject barely applied to me. Eat a low amount of calories and as little fat as possible.. right did they not want me to be at the minum bmi going into transplant?

One of the biggest issues I had in my later high school years was being sick a lot and fatigue. I am not sure if you know but usually when we get sick its cause of pneumonia and it puts us in the hospital for 10-14 days. Depending on the severity of the Disease this could occur once every three...

I don't think smoking it helps with antibacterial or antifungal, if anything is a higher risk for getting them infections. That being said, Several years back I asked my CF specialist about it, and he would not say to much cause it was still 100% illegal at that time. But what he did say was...

Good for you, I am glad you are doing this. I don't have a blog, but have a small circle of CFers that are pre-transplant that I tell my transplant expierence to, and the few who have transplant are thrilled that I was able to help make the process go smoother. Keep up the great work and stay...

I will send you an email, although for all of us cfers I am not sure how we can really explain how it has impacted our lives, as we have lived with it our whole life. Well excluding those who had a later in life diagnosis.

I am sorry that you were diagnosed in your teen years. I know CF can be very difficult at any age in life. And I am probably not the first to tell you, it is perfectly normal for us cfers to go through stages of not taking meds. Depression is also pretty much hand in hand with CF. I am 32 years...

I don't live anywhere near lafayette, but it is my last name

I also missed a lot of school when i was a junior and senior. I was healthy enough to make it through junior year, barely passing. My senior year half way through I was well over a month behind and dropped out. The next year I went back and the same results. I got through first semester then...

same here, i have had so many iv's in my armss was pretty rare for them to start one, then same with picc lines. I loved my port and wished I had gotten it several years sooner. (port was removed during my trasnsplant)

To put it bluntly it's a slow suffocation. I had a friend who passed away last year from cf. She was hooked up to all the machines and was pretty doped up on pain killers, so I don't think she really felt or knew what was going on. Myself I got lucky and got transplanted before I got that bad...

I am Mike, all of us CFers go through rough patches. Its great that you are seeking someone to talk to about your rough time. You have chosen a great place. You can message me anytime and I am more then willing to help ya through the bump in the road. I am 31, and had a transplant just shy of 14...

Everyone with CF goes through these stages, I would go on and off my meds for months at a time when i was in my teen's. I think I was in my mid 20's when I realized I better change my ways or I won't be around to long. I do attribute part of this due to the fact that my whole life I was told by...

The only restrictions the Dr's told me were: No grapefruit, as it interacts badly with anti rejections, No Sushi, as a higher risk for bacterial infection, and lastly to not eat undercooked meat. This one I ignore, as I can't stand medium and above cooked steaks. But the "Universal" one all the...

The new lungs will not get infected with Cystic Fibrosis, as they were created "normal" without the defective Gene. 3 Days after the breathing tube was removed, I took off the oxygen, and 10 days after breathing tube removed I have yet to do a neb. And yes to an extent about viruses and...

That is the closest transplant center to me, The CF doctor, before he retired, Dr. Accurso actually recomended I go to Seattle because of the amount of transplants done.

I had my transplant done at the University of Washington Medical Center in Seattle. Denver is closer to where I live, but as you said the wait times are long. So I chose Seattle.

A lot of things can determine the wait time, such as location, blood type, lung size. I was on the list a total of about a year and a half. I have 3 "dry" runs before getting a set of lungs.

Up until I got real sick and was hardly eating, this is how I gained weight. My older sister works for a protein company called BNRG, they sell protein shakes / bars, I never cared for the shakes, but the protein they use is broken down very far, and is easily absorbed. The guy who created it...

No, don't apologize you can never ask to many questions on a major surgery as this. To be honest I do not remember much of the first few weeks after surgery, as you will be on a lot of pain killers, well atleast I was. I have had zero rejection attempts. And don't pay attention to life...