2yr. old with PCD- questions


#21

There is this saying, if one get’s out of the shower, and it opens
up the lungs, then move to Florida, but if you get out of the
shower, and are having trouble breathing, move to
Arizona , and i have…although I can see where the warmer
weather might be a plus.?


#22

I have to agree with Laurel on the climate thing. It seems to be very individual and there is no such thing as a perfect climate–although years ago San Diego was considered to be the closest thing going. I suppose we could all just become millionaires and move to San Diego. The climate is mild, there is a light mist of negatively ionized air coming off the ocean (like living in a mild neb), but not so much that you feel like you are drowning in humidity. Downside–average home price is about $650,000 (that’ll get you a fixer upper).

It’s probably safe to say that extremes of any climate can be hazardous to your health. The humidity is downright dangerous for people with CF because of the salt they lose from sweating. Probably not as big a problem in PCD, although rehydration would be important. Same in the desert–secretions that are too dry are not moving up and out like they should. Then you go up to the frozen tundra and the bitterly cold air can damage airways just by breathing it in. You can’t win. Maybe we could find a nice island off one of the coasts and claim it for PCD. If the natives are reluctant to turn it over, we could threaten them with loogees, a weapon this patient group has in endless supply!


#23

Michele, not really, because of the ocean, there is fog…and
believe it or not. Fog is not good for those who have lung
disease…I know it was on the article of COPD…I had…
But I do know of two who moved from San Diego because of
severe asthma to Phoenix…I am sure there have been some
who have moved to San Diego, less smog…Actually Tucson,Az,
does not have the pollution, that either San Diego or Phoenix has,
is 1000 feet higher then Phoenix is…also I heard that Bullhead
City is dry and I know of someone who got off of their
oxygen who moved to Bullhead City…started a lung group there
and everything…now there it is really hot and dry…
And for allergies, if you are moving for allergies, the saying is,
it takes 7 years to develope new ones…
And Laural did mention NM, which has high altitude…and there
I would love to live…too…
For me, I am not sure I could make the move again…it is hard
to leave your family and friends and doctor’s, but since I was
young, and there was a promise of a cure, I did move to arizona
in 1967…and have not regretted it…
For me I can’t take dampness or icy cold weather…then there
are some who feel better in colder weather. 63 now and loving
it…


#24

Hi Betts,

Hope you know I was just kidding about everyone moving to San Diego (or doing a hostile takeover of a tropical island). The point is there is no perfect place for everyone and even if there was, circumstances would probably interfere with us being able to avail ourselves of it anyway!


#25

What if one doesn’t shower???

Betts wrote:
There is this saying, if one get’s out of the shower, and it opens
up the lungs, then move to Florida, but if you get out of the
shower, and are having trouble breathing, move to
Arizona , and i have…although I can see where the warmer
weather might be a plus.?


#26

Actually you mean you never have used a swimming pool,
or when you come in from swimming off the beach,one showers…
But actually , i guess if you don’t shower, then you have
to see what happens…if one does.
About one of my friends who has asthma , it is so weird, she
even does well in the monsoon in Phx…but in San Diego she
was dying in the hospital, when the doctor’s told them to move
to Phx. when she was a kid…she of course is a retired teacher now,
but still cannot go back to San Diego…her asthma flares up…?


#27

Oh Betts,

you silly person you-

Are you pretending you didn’t know I was just kidding? You know I was only kidding.

I’ll write back when I get back from looking for your sense humor…lol


#28

Betts,

Seriously, How are you doing? Right now, the weather is kicking my butt. I have a killer headache.

:–)


#29

Just wanted to also weigh in.

Our 13 year old son was diagnosed KS at birth. We took him home after ten days in NICU with a lingering pneumonia. Nick was initially seen by Dr. Harsch at Egleston’s Children’s Hospital, a brilliant pulmonologist working along side the CF division of the hospital.

At four months Nick contracted RSV pneumonia and was hospitalized. He didn’t respond to the battery of antibiotics. It was Dr. Harsch who saved his life using what was then considered experimental antibiotic treatment. I cannot remember the name.

Nick has had ear tubes since he was 4 months old. He has some mild hearing loss and often complains of sounds bothering him. His last tubes fell out a couple of years ago and the holes have closed. He does not experience a whole lot of ear infections as he did when he was younger.

Nick does continue to have lung issues but these are rare. We are very careful at home as there are three other children. We only use paper towels and are avid hand washers. We have also used a lot of color coding to keep the children from drinking out of each others’ cups and such. This is really for when they are smaller. You can’t protect them from everything but my goal was to give his body time to develop. Their airways do get larger and their ability to exercise harder does as well and he has been able to expectorate better this way than when he was a baby (as an infant almost impossible).

Nick is healthy, active, intelligent and very happy go lucky. He plays softball and is a natural trumpet player. This year he will take up the drums. He knows what he has but does not yet appreciate what it means. This has been the hardest part of all. Only recently, did I see some recognition in his eyes during an emergency doctor visit. He had a sinus and lung infection. His lungs cleared but his sinuses continue to give him problems.

By the way, he has not ever been officially diagnosed. The nasal biopsies were inconslusive. We got on a list for UNC years ago and never heard back from anyone.

We will be seeing the pulmonologist again soon and we will see how his lungs are faring.

Stay positive and know that each case is different. Most importantly, let your child enjoy life.


#30

don’t shoot the messinger…good point…I was with my doctor’
and I corrected him to say , pcd with SI…he was interested in the
new term…doctor’s still want to separate those with pcd and those
who have ks…and then when I see how often, symptoms are
the same, but then the nasal bx is inconclusive…I am not sure
what that means…but hopefully a better test comes along…even
CF goes undiagnosed at times…or CVID…