My baby has Strep Throat. She started getting a sore throat last night, and she had red dots (petechiae) on her palate in front of her tonsils. This is a SURE sign of Strep Throat for Casey. This morning, she woke up with a fever, headache, sore throat and a stomach ache... all sure signs of Strep for her. I called the doc's office which was closed, but talked to an on-call nurse, and thankfully, her doctor called in an antibiotic for her. I'm so thankful for doctor's who trust a mom's judgement.
I cannot remember what my doctor told me about this Sara. I think since we are immunosuppressed, we are still as susceptible to any bug that a pre-transplant CFer has. When I met one of my friends who has Cepacia, we stayed outside when we could, I didn’t touch things that he touched, I washed my hands a lot, and other than a hug, everyone in our group obeyed the 3 foot rule with him. I wouldn’t be hesitant to meet anyone with CF as long as these precautions are taken.
Is Jason EVER serious?!?! Do you have to do what I do and tell him it's a serious conversation so he won't start with the joking? :)
Is Jason ever serious? Honestly Laryssa, not very often!! Casey and I are always saying “Jason, I’m serious.” And sometimes I don’t get his jokes. He’s way over my head a lot. Haha. I think this is one reason he handles my illness so well. Whether I’m laid up in the hospital or feeling great, he’s ejecting humor into the conversation.
How often do you have to renew your license and if you aren't ever going to go back to the medical field why do you renew it?
Somer, you have to renew every 2 years. Actually, my license is in an “inactive” status right now (hopefully for just a short time). As of this past renewal, you have to show that you have had continuing education. I haven’t, unless you count all the nursing care I do on myself. ☺ This is a new thing for licenses in NC. I am looking into that right now, and plan on doing that soon. As long as I do it within 5 years, my license can be put back on active status. The reason I have kept it up for all these years?? Up until the past 3 years, I kept thinking I might work in nursing again. Then after that, we had a flu clinic at my church 2 years in a row that I helped out with. If I ever do anymore volunteer work like that again (that requires me to use my nursing skills), I’ll need to have a license.
How much (if at all) is your CF team still involved in your care? I know that post-tx you have a tx pulmonologist, but are you still seen in the regular CF clinic?
Piper, I don’t see a CF doc at all. For several years after my transplant, my transplant pulmonologist handled pretty much everything like a primary care doctor would. I’ve never had too many CF stomach issues, and have adjusted my pancrealipase as needed. I have noticed recently that my tx pulmo doesn’t want to handle the small things though that aren’t related to my transplant, so I probably should find a primary care doc. I would recommend NOT leaving your CF doc if you really like them. My tx pulmo would probably prefer that I had one, as long as he was still in charge of most of my medications.
I received these questions via email from my friend Amanda…
Just thought I'd ask if that kidney settled in. Do you go to the bathroom normal now? How has this last transplant affected your Mom?
No, my kidney hasn’t settled in. I still have a bulge, and I think I always will. My frame is so small and the kidney is very large. It has lots of filtering ability though. ☺
I go to the bathroom like I did before kidney disease. I have never been one to go that much, even now that I’m drinking 2 liters of fluids a day and taking a diuretic. My creatinine is fine though and my kidney seems to be healthy, so I guess it’s just my body. I do however, have a lot more volume when I do go.
My mom is doing great. She doesn’t have the appetite that she had pre-transplant, but I don’t think she minds that too much. Some of her tastes have changed too, but that has also happened to me. We don’t know why that’s happened. She is exercising, keeping my nephew, and looking and feeling great!
One more from Mandy...
I noticed your profile says that you weren't diagnosed with CF until age 4? What were the signs/symptoms?
My only symptom as a baby/toddler/pre-schooler was malabsorption. I think I did get colds easily, but I didn't have any lung infections. When the doctors tested me for CF at 16 months and it was negative, they had my parents start me on a gluten free diet thinking I might have Celiac disease. That didn't help obviously, so finally they sent me to a hospital about 4 hours away from my hometown when I was 4 to try to figure out a diagnosis. They again did a sweat test which turned out to be positive.