azdesertrat
New member
Becky & I went to PHX yesterday for an appointment with my CF Pulmonologist.
I've had this particular doctor on my medical team for the last 15 or so years. He's really a great doctor & we trust him inherently.
The appointment went real good. My PFT's were up 5% since the last time I had them tested in 2013.
My lungs are doing great, the side-effects from the anti rejection drugs seem to be the biggest problem anymore.
I've developed a horrible sun sensitivity. My face is constantly burned & peeling on both sides. I've had to quit shaving because it's too painful with all the burns.
My common bile duct seems to be giving me 'issues' too. I've still been having fevers & night sweats sometimes every 3-4 days but mostly once a week or so. It's really miserable.
When I get a fever, it can run clear up to 103 degrees. It really wipes me out when it's all over with. It takes a full day to recover. I wish my Med Team could figure out how to make that problem disappear.
The sun sensitivity has REALLY put a cramp in my life style. I'm scared to ride my ATV anymore. The last time I did, my face got sunburned even though I applied SPF 50 sun block with zinc oxide in it, just as my dermatologist suggested.
I even wore my shemagh (Arab headdress/scarf) over my face for a good majority of the day & STILL got sunburned!
Does anyone have any better ideas on how to avoid this sunburn crap?
Take care, hope everybody is doing great.
'Pat'
I've had this particular doctor on my medical team for the last 15 or so years. He's really a great doctor & we trust him inherently.
The appointment went real good. My PFT's were up 5% since the last time I had them tested in 2013.
My lungs are doing great, the side-effects from the anti rejection drugs seem to be the biggest problem anymore.
I've developed a horrible sun sensitivity. My face is constantly burned & peeling on both sides. I've had to quit shaving because it's too painful with all the burns.
My common bile duct seems to be giving me 'issues' too. I've still been having fevers & night sweats sometimes every 3-4 days but mostly once a week or so. It's really miserable.
When I get a fever, it can run clear up to 103 degrees. It really wipes me out when it's all over with. It takes a full day to recover. I wish my Med Team could figure out how to make that problem disappear.
The sun sensitivity has REALLY put a cramp in my life style. I'm scared to ride my ATV anymore. The last time I did, my face got sunburned even though I applied SPF 50 sun block with zinc oxide in it, just as my dermatologist suggested.
I even wore my shemagh (Arab headdress/scarf) over my face for a good majority of the day & STILL got sunburned!
Does anyone have any better ideas on how to avoid this sunburn crap?
Take care, hope everybody is doing great.
'Pat'