i'm in house and doing aggressive therapy

Vampy

New member
so i had previously posted about the last clinic i was at giving me a lot of trouble. Then i posted i started going to the childrens cf clinic in dayton. Let me say amazing!! its near a 2 1/2 hour trip from where i live but worth it. After talking to my dr and deciding that my lungs where full of junk and i was, what he called, "Behind the 8 ball" i was sent over to the adult cf place at miami valley hospital and i was very worried, i had never went anywhere else for 26 years and i must say that i am pleasently surprised and happy with this place. The dr remembered the horrendous times i have with my ivs that i had discussed with him, they were ready for me with a bed side picc line when i got here. they all welcomed me with a warm welcome and brought me a fridge and filled it up with all the high calorie protien goodies you could ask for. they are very friendly and even brought me a fan for my room to make sure that i felt like i was home. the drs told me that the staff here are extremely dedicated to the cf patients and i can definately say that i can see that. I couldnt be happier with switching, here i am treated like an adult and they LISTEN to me and my concerns. I would recommend dayton cf clinic to anyone. I wanted to thank everyone for the support.
the drs are saying my body is sensitive to everything after doing cultures, that my pfts dropped 20 percent in the last two years. i'm at a 65 now and we are trying to get them back up and possibly be put on the new cf drug Kalydeco i think its called. they even said with me having a five year old at home if i wanted i could do home treatments. The last clinic acted like they didn't care, made you feel stupid, called me a hypocondraic even. They refused to listen to my concerns as a parent and a patient and now that i changed i couldnt be happier thanks guys for your support <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

beleache

New member
Hi Betty,
What an awesome post !! I am so happy for you that you have found a center that cares about their patients ..
Good centers/Doctors/Nurses can make all the difference in the world !
Its great news that you may go on Kalydeco !! Wow ! Good news all around..
Take care <3 joni
 

Vampy

New member
these drs were upset bc my previous drs were pushing back the care of my cf for like years, i went from high 80s to low 60s, my lungs will getting crowded with mucus, i couldnt breath and i guess i had started coughing up mucus plugs all within the past two years. the drs at the old clinic said that it was a fast progression but would not do anything about it, i got the "We can't push your treatment back anymore. you can't afford it" talk. I never heard of people coughing up mucus plugs! they are terrible. they are checking all my blood work and found out that i am very vitamin D deficient and are hoping with this treatment they will put me on Kalydeco <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Tisha

New member
My doctor here in Spain (who is really good in my view) doesn't have a clue of why I've dropped from a FEV1 of 80% to 36% in three years. I was suspecting the gluten intolerance which I discovered a month ago, but still not sure of numbers. I'm thinking of getting a second opinion now that I'll be visiting Sweden this summer. Your post has given me extra willingness to do so! Glad for your sake!
 

Vampy

New member
Tisha if you have any question about the care your recieving and something doesn't seem right, go for a second opinion. I had contacted the CFF about my clinic and the lady at the head of patient cares told me the same. it was the best decision i had made, i guess i was sicker then i had previously thought and my drs had taken the bull head on. NEVER settle for less then YOU deserve!! Sometimes you have to look out for your own well being bc the people we put our trust in, sometimes wont.
 
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