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I really like this post because I am always curious about older CF's and especially the age of diagnoses (and any other story that goes along). Very inspiring stories here! I will be 47 in 3 months and was diagnosed at the 3 months of age. I am doing pre-lung transplant testing this week and...

That's a very encouraging story. Thanks for sharing and good luck to you both!

Michelle, I wouldn't worry what Quest thinks regarding you dropping off your daughter's levels. As long as your home health care nurse and doctor approve, then it's all good!

Do you take anything for your reflux? I suffered for years with that debilitating pain and then started taking lansoprazole (prevacid) BID and have no more pain. Thank goodness.

Wow that's really cool that your home health agency let's you draw your daughter's peak and trough levels. Just curious, where do you drop the blood levels off? Anyway, good thing you are going to call your doc in the morning just to double-check that you are doing it right.

Kyrav, I am sorry to hear about your "one after another problem" with your transplant eval. I am having my first meeting with the transplant team and not looking forward to all the tests either. I don't have any good advice since I am just starting my eval, but I can relate to what you said...

Congrats! It is encouraging to know that you weren't in the hospital so long! Good luck to you with your new lungs!

Thanks everyone for your replies. LL, I always appreciate your detailed responses. The way I look at it, CDC requires vaccinations for a reason. To get out of them, one has to sign a form of religious reasons as to why they are not getting their child vaccinated. I talked to my home health...

Vera, I am in the same place as you. I have my first consult with the transplant team in a few weeks, and it's really scary. I knew over the past 2 years my health was declining a lot, regardless of all the work I would do in the way of treatments, IV's, everything. I sure wasn't ready when...

Great question! I'll have to ask my transplant team if people with no vaccinations are allowed to be donors.

LOL thanks Bill.

Hi! My husband's newborn nephew will not be having any vaccinations. The parents (one of them) are adamant about this. I have been doing research on the web and found a few articles that claimed kids with no vaccinations are a danger to sick people with compromised immune systems. I have my...

Hi Matt, I am not sure what your PFT's are, but my lung function is very low and I am getting ready to do my pre-transplant meetings, that is why I am always short of breath. It's such a bummer, and I can totally understand how scary it is to be short of breath a lot. When I do anything...

Good luck with your upcoming procedure to place a new port. I have had mine for 3 years and LOVE it. Have you thought about where you are going to have it placed on your body? Mine is in the standard and common place, upper-right chest-third rib from top. My port does stick out, so I can't...

I can't stand the taste of my own (lady-like) burps after I have taken aquadeks. I only take them at night because of this and when it comes time to order more vitamins, I will order the yummy chewables (not aquadeks)!

I have had three of those, if it's the same thing as yours. Mine was a HUGE plug, though. I felt mine in my chest for 3 days and was reluctant to get it out because at the time I was a huge bleeder, and was afraid there was loads of blood behind it. Anyway, long-story-short, when it finally...

One of the best stories I have when I was in the hospital once (at my children's clinic, not where I am currently), was my RT FELL ASLEEP doing my PD. LOL! She was standing up and was hardly beating my and then it got slowwwweeer and slowwweeer and then stopped. I turned to look at her and...

That's the honest truth when your friend who is an RT admitted that it's soooo tiring to do manual PD. It's not like we choose to have CF and choose to need a good beating on our lungs, soooo.....it always hurts my feelings when I get a horrible RT who does horrible PD. Most are so bad that I...

Right on! Good for you for being on an all natural health food diet. There are healthy fats, which are really crucial for people with CF. Peanut butter, trail mix, cheese, granola, avocado, etc.

I can't believe that people are so cruel and rude to ask your 14 yr. old if she is pregnant. That is horrible. My personal relationship with weight is that I didn't start dropping huge amounts of weight until my PFT's have consistently been 30%, and in the 20's when I am sick. It takes a lot...