I am 65 and have Kartagener’s and would like to talk with you - ref.
2282.
Marilynn
Hi Makena’s mom,
My son would like to have 10 children. He has PCD. I haven’t told him that he has a 50% chance of being infertile. I think there are other things boys can do to assist in fertility. I’m not going to bring up the subject to him. It might not even be an issues so why burden him with the thought.
Our main goal is to keep his lungs as healthy as possible.
Did you know that there is a yahoo group for parents with children with PCD. It’s called pcdparents@yahoo.com
There is also a patient group called Kartengers on the yahoo groups.
Mary Kay
Hi Marilynn.
I’ve been trying to get an idea of what to expect for my son. He is 8 and
has been relatively healthy, never been in the hospital. He’s had ear
infections and up until the last 6 months, he never has had a lung
infection. He had bronchitis (I think it really was pneumonia) in April and
last week was treated for wheezing (he’s on antibiotics now). Thanks for
anything you can tell me.
Rita
-----Original Message-----
From: brooklyn [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Friday, September 21, 2007 11:16 AM
To: Mercier, Rita L.
Subject: [kartagener] Makena’s mom
Hi Rita
I have Kartagener’s because my parents both carried the gene - they
were second cousins. The only part of Kartagener’s that my brother
has is asthma. I have asthma, allergies, fluid behind both eardrums,
bronchiectasis and had the lower half of a lung removed in 1979. I
breathe at 30% of my capacity at this time. I am n 2% oxygen at
night only. I cannot go above 6000 ft. altitude. I was born in
Brooklyn, NY but moved out here in '63 because of my bronchiectasis
to a drier, warmer climate. I never had a great sense of smell. I
always was sick as a child and had pneumonia 8 times when I was a
child. I also have had pleurisy once. All of my organs are
reversed. I had my first colonoscopy last year and they had to turn
the table as the sphincter is tilted the opposite direction. I
actually coped with life ok until about 10 years ago and then started
getting worse. Some of it might be attributed to the fact that I am
primary caregiver for my husband who had a stroke 10 years ago. IT
is a very tiring job and I am sure has contributed to things. I tire
easily and get out of breath very easily. That is the most
frustrating thing for me - to not be able to do what I used to do.
This should not scare you though as Kartagener’s has so many
different symptoms and each person is different. I was never an
athletic person because I was ill as a child. I used to get shots
from my Dad, had to use mustard plasters, went to a chiropractor as
at that time they thought would help. I also have arthritus, nasal
speech and irregular heart beat. Please stay in touch and let me
know how your son is doing. If there are any questions i can answer
or things I can refer you to, also let me know. I have been going to
pulmonary dr. for 10 years and it is the best thing to do. I also
know that prednisone, while it can be helpful, it is also a dangerous
drug. I have changed drs. several times if they are the kind that
want to prescribe prednisone for everything. I also take
Arithromycin (Z pak), 500 mgs., 3 times a week as a study for
Kartagener’s showed that was helpful.
Marilynn
On Sep 21, 2007, at 9:08 AM, Rita wrote:
Sorry, it is KS with SI.
This is great info. Luckily, my son is very active which I hear helps keep
stuff cleared out of his lungs as it promotes coughing. We just received a
vest for him (he used it for the first time yesterday). I am hoping it
helps. We are planning to take a trip to UNC to get him involved in the
research study going on there. I want to take a proactive, aggressive
approach to preventing the worsening of his condition. It’s funny that you
say you moved as a result of your condition. Where are you living now? We
moved to Tampa from Washington, DC a year ago for my son. He would have a
lot more problems in the winter. This past winter (our first in Tampa) the
only times he was sick was when we went back to DC to visit and then he came
home with it. His grandparents and 2 aunts with their families are actually
going to move here, too. This will reduce the number of times we go back
and forth up north. Thank you so much for your time in answering my
posting.
Another concern I have on his behalf is fathering children. Ever since he
was tiny he has said he wants to have 4 children. 
I am hoping this is a
possibility for him. I guess there is always adoption or IVF. I wonder
what a good age is to start letting him know he may have trouble having
children the ordinary way. I know it is not yet, but still it’s something
that has crossed my mind on occasion.
Thanks again.
Rita
Glad the info was helpful. Kartageners is where you do not have the
cilia to move infections out of your lungs, etc. I just learned that
it also causes infertility - my brother has 4 children. I have never
been able to have children. I moved from NY to Phoenix. I also
lived in So. California for a while. I was told to move to a warmer
drier climate - if I remained in NY I had about 5 years to live.
That was in l963 and I don’t know how much they knew about that
then. I was told to move here or to San Diego. San Diego of course
is damp and cooler. I don’t know how good that would have been.
Rita - I don’t know if sterility occurs in each case of Kartageners -
don’t know how you would find that out. Probably teenage years would
be a good time. I am glad he can be active - it is harder for a
boy. Stay in touch.
Marilynn
On Sep 21, 2007, at 10:47 AM, Rita wrote:
I am 32 with PCD. I live in Eastern Kentucky. However, I grew up in Northern Maine…I dont really see a difference in my condition between moving from the north to a more southern state.
I also have two brothers who have Kartagener’s and one of them has a son - I also have a son. We were lead to believe all our lives that it wasn’t possible for us to have children. Shortly after I had my son…my brother and his wife found out they were expecting. Nevertheless, it’s easy to imagine that our children are the delight of our worlds. My brother lives in Wash DC and I don’t think he ever made a comment about that climate making him more or less ill. We are both very active people and see our doctors regularly so I think that helps keep us moving along.
I wish you the best.
Darlene
32, Kentucky
I too moved to Arizona in 1967, I moved from Seattle, my doctors told me I would not live past 30, and if I moved to az , it would be 50, well now I am 63…hard to believe. I don’t ski or play double tennis, i just went on oxygen about 2 years ago…
I worded 32 years and went on disability when I was 55…I also have a low immune system and get ivig gamma globulin once a month.
I do not have reversed organs, they say that 50 per cent of pcd can get pcd…
Even those with reversed organs may not have pcd…there are research centrs one can go too, or the Mayo in Scottsdale AZ , I went to the univ of arizona in 1990 when I was diagnosed with pcd
We just had a Ks and Pcd conference two weeks ago, I got to meet Dr Stillwell from childrens and the other drs from Nc who do research…sorry you missed the conference.
thanks,
betty
Thank you so much for this info. My son does very well right now (never
been in the hospital with it), but not knowing anyone else with this, I
don’t know what to expect. I’m glad to hear that there are men out there
with children who lead healthy lives even with this. I am a member of this
other group of people with PCD/KS and all they post about is their current
bugs, what antibiotics they’re on, they’re hospitalizations, lung
transplants, etc. It makes me worry…
Rita
-----Original Message-----
From: dmhowell75 [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Friday, September 21, 2007 5:30 PM
To: Mercier, Rita L.
Subject: Re: [kartagener] Makena’s mom
Don’t worry too much Rita, hopefully your son has a mild version of the
syndrome. There are definite variation of severity even within the same
family. I’m 50 years old and I’ve never been hospitalized with this either
or anything else for that matter. The only medication I’m on is advair. I
think, perhaps, people who suffer more from PCD (Kartagener’s) post more
frequently.
Best wishes to you and your son,
Shelagh
-----Original Message-----
From: Rita [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Monday, September 24, 2007 6:38 AM
To: shelagham@cox.net
Subject: Re: [kartagener] Makena’s mom
www.pcdfoundation.org
has your child been diagnosed with a nasal bx or NO test…
ONe thing I have learned being on the pcd forum, yahoo group,
not everyone is the same…
http://www.laughs.com.au/sid/
yes there are types of si that do not have bronchiectasis,
sinusitis, tubes in your ears…
it would be interesting to know if what your cilia did
on the nasal bx…
He will be going to UNC in the near future for his work-up. It seems there
are varying degrees as to the actual affect that PCD/KS has on an
individual. I am hoping for the best since he (at 8) has never been
admitted to the hospital, and has only ever had 2 lung infections. He does
get sinus and ear infections, but we started doing sinus rinses about 9
months ago and they are much improved.
-----Original Message-----
From: betts [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Monday, September 24, 2007 10:32 AM
To: Mercier, Rita L.
Subject: Re: [kartagener] Makena’s mom
My daughter, Tristen 2 1/2, has had sinus/ear infections since 6 weeks of
age. When she got her tubes placed and her adenoids removed, the ENT was
asked both times to do a PCD biopsy, but said she was too small at the time.
He also said that since her infections would “clear up” on antibiotics and
she hasn’t had anything more serious, that he doubted it was PCD. She still
has not been tested, but still is sick all the time! Now that she’s a
little older, I’m going to insist on having the test done. I didn’t know
that there could be variations on the degrees of PCD. Thanks for the info
and know I will be going to the ENT to have the test done.
Danielle
-----Original Message-----
From: Rita [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Monday, September 24, 2007 7:57 AM
To: daniellemina@yahoo.com
Subject: Re: [kartagener] Makena’s mom
Hi Rita - how is the weather there today? I have never been to
Florida. I just wanted to tell you what my dr. told me one time - he
told me not to go online and research Kartagener’s - he told me to
just live my life and not get caught up in researching it all as it
would be depressing. I followed his advice until recently and he was
right. It is good to research and learn but not to dwell on and get
so depressed. Hope this helps a little. I have had my sinuses
cleaned out and polyps removed 2 times. If I did not have ‘K’ the
first time would have taken care of it. I have also had my lungs
cleaned out 3 times. I think I need that again now. These 2 are
simple procedures. The best thing to use for anesthesia, for me, is
Versed. I do not have trouble breathing when the procedure is
over. Keep in touch. I am sure he will be fine and yes, there are
varying degrees of the effect of ‘K’ on people. Sinus rinses are
great - Dr. Oz on Oprah told about a Yeti pot that you can get at
health food stores for rinsing sinuses and it looked like a great way
to do it.
On Sep 24, 2007, at 7:56 AM, Rita wrote:
Danielle,
Does Trista have a constant runny nose?
Mary Kay
Got a little couch potato?
Check out fun summer activities for kids.
http://search.yahoo.com/search?fr=oni_on_mail&p=summer+activities+for+kids&cs=bz
For the most part, yes. Her story is so complicated it’s hard to figure it
out. After Tristen was sick week after week, her pedi finally did some
blood work when she was 8 months old. It showed that she had elevated IgE
levels (allergies) and low IgA levels (antibodies). At 8 months she was
diagnosed with food allergies (egg (anaphylactic), milk, peanuts & tree
nuts) and environmental allergies (dust, dog, cat and mold). She was
started on zyrtec, nasonex and singulair daily. She also got PE tubes and
her adenoids removed. However, she still continued to have sinus
infections. She then was tested for reflux, cystic fibrosis, diabetes,
immune deficiency, but all were negative. She has now started allergy
shots, but has been sick again, so we have had to cancel more than half of
the shots. Today she finally seems symptom free after being on her second
round of Augmentin, this is day 5. But if all goes as “normal”…in 5 days
when this round is over, all her symptoms will return again. Once we can get
her to a state of “healthy”, she will then be prophylaxed for the next 8
months. However last year she started getting break through infections and
those “super bugs” were very hard to get rid of.
I was even told by the head of the ENT dept. at Lucille Packard Children’s
hospital at Stanford…that I just have a snotty kid and theres nothing to
do for her!!! I left there crying. Needless to say I never saw him
again.
I just feel that all these infections started when she was so young, and
they are constant and consistent, that something hast to be causing them.
And I hope to one day figure out what it is.
Danielle
-----Original Message-----
From: mkf [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Monday, September 24, 2007 2:17 PM
To: daniellemina@yahoo.com
Subject: Re: [kartagener] Makena’s mom
Thanks for the e-mail. And, that is great advice.
-----Original Message-----
From: brooklyn [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Monday, September 24, 2007 11:21 AM
To: Mercier, Rita L.
Subject: Re: [kartagener] Makena’s mom
My son also had his adenoids removed when he was about 2 and they failed to
test him as well. What a missed opportunity…
-----Original Message-----
From: DJMina [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Monday, September 24, 2007 11:04 AM
To: Mercier, Rita L.
Subject: Re: [kartagener] Makena’s mom