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welshwitch- I think my doctor said I have chronic sinusitis too. And i have no sense of smell or taste (it's been like that for years). But that's interesting that you mention that because my doctor recently mentioned using Pulmicort in my nasal rinses (which I think is similar to Budesonide)...

I had a lung transplant (and liver) in late 2012. I had sinus surgery in December 2013. But I have constant mucus buildup and sinus drainage 24/7. I blow my nose several times a day and cough up stuff often that I know is from the sinus drainage. I do sinus rinses at least once a day, every...

My first question about ports is how long have you had them? I've had mine for 3.5 years. I want mine out so badly though. I've had a transplant over 2 years ago. I do use it every month for IV IG though. But the annoying part is that I cannot wear 95% of shirts because they all show my...

What terrible irreversible side effects does Reglan have? I took Reglan for many months and I don't think I have irreversible side effects from it. I've been taking Domperidone for about 9 months and I haven't had those cramps/pulsating thing. Although I did have a few random episodes where I...

Mike Brown- I have Cystic Fibrosis and gastroparesis too and it's a pain in the butt! My stomach nerve was cut when I had my lung and liver transplant. I was on Reglan for months and then the doctors took me off of it. I was fine for a while but then in about 3 weeks time, I ate less and...

Thank nmw and Melissa but I have a loooot of physical things wrong with me and I was just trying to improve one of them. I do try to dress for my body type (which is like a ruler with no hips) but it's hard because all of my tops need to cover my port that sticks out a lot. And it's hard to...

I'm a girl with a very large rib cage (known as a barrel chest). I'm assuming this is due to CF. I'm small everywhere else so it looks really odd. I even had a nurse ask me what was wrong with my rib cage when she was putting on electrodes. I read that the only real way to help this is to...

Thank you, Autumn, for your input. I decided I'm not going to tell my transplant coordinator because I already tell them too many problems lol. But I'll see them next month. Thanks!

My side (kind of back side) right below my ribs started feeling gurgly/bubbly (without any noise) last Wednesday. Today there has been pain that has been increasing and my side twitched for half an hour straight. It now twitches on and off with tenderness and it's just uncomfortable. Now my...

That's true. I'm not so worried about my liver right now. Thank you :).

WMom- Sorry to hear that your son is going through this. I understand being fatigued although I have never passed out from it. I just felt like sleeping all the time and was never really felt awake. I understand CFers and people after a transplant (which I have had) get fatigued and will not...

donin- I went to Houston Methodist for my transplant and I waited about 23 months to get the call. I can answer any other questions. I don't mind at all. BreathinSteven- Hi Steve. Thank you for listing those symptoms. I've done some research (not that I'm an expert or anything) but a person...

I actually did end up telling my lung transplant coordinator. I told her that I also have thrush so she gave me some Levofloxacin (antibiotic). I feel like it is rejection starting but no one seems to take me seriously. Thank you.

I've had a double lung and liver transplant in 2012. My lung function is fine and is as high as it's been after the transplant at about 60%. But I started to get palpitations in October. And now my heart races so much whenever I just walk or do anything that is somewhat physical. I also seem...

So I'm 25 now but at age 21, my fev1 was about 50% I think. My weight was about 100 lbs (I'm 5'2"). I received a transplant right after I turned 24. My fev1 now is about 57% and I'm 85 lbs now. Keep up the good lung function! You seem to be doing well.

I've had my port for 3 years now and it's much easier than picc lines. I don't remember getting it in but there's anesthesia of course so you won't remember it. I think it hurt only a little bit for a few days but nothing worth pain pills. I've never been strong enough to work out vigorously...

Ohh ok, that makes sense. Thank you so much for explaining!

Love those lyrics! Thanks for sharing :).

So does taking many immunosuppressants after an organ transplant affect the body the same way as HIV? I know HIV lowers the helper T cells and some immunosuppressants inhibit T cells but I'm not sure if it's the same or causes the same kind of stress on the body. For instance, I'm taking...

I've had CFRD for about 11 years and almost never had a problem with getting low after eating until few years ago. After my lung and liver transplant, I was told I have gastroparesis (my stomach nerve got cut so food takes a looong time to move through). Anyways, that means that reactive...