Sunday, March 14, 2010

Living With COPD (Kartagener Syndrome)


To look at me, one would never realize that I have this disorder...Kartagener Syndrome. It is an internal process so it is only announced by an external application such as wearing oxygen tubing to provide the level of oxygen your body needs to function properly. Since I do not wish to type out the definition and description of this disorder, I am providing the link to the Wikipedia version which will give you a little insight. http://en.wikipedia.org/wiki/Primary_ciliary_dyskinesia

Assuming you visited the link, did you learn anything? :) My main reason for letting my readers know about this personal, and up until now concealable disorder is that I am at the stage where I can not hide my physical ailment any longer. This past Thursday I went for pulmonary function testing and then paid a visit to my pulmonary doctor. The outcome was not a good one and so now I am breathing in mechanically produced oxygen through a tube that goes into my nose.....24/7......I HATE IT!!!!!!

I didn't mind, and even accepted this disorder as just a part of my life. My mother has told me that I have always had a positive outlook, even as a child, which got me through a lot because I was a sickly baby, going through many surgeries and procedures before the age of six. This disorder went undefined until I hit 40, seven years ago. Since then it has steadily gotten worse. It has progressed really only because I have not had the proper medical insurance or none at all and that meant I could ill afford the treatments conducive to keeping this disease at bay. So, here I am with this NOT so pretty accessory attached to my face, like a big north star blemish, and a tank (although be it small) hanging to my side via shoulder strap. How inviting for casual conversation with handsome strangers! Yes, my worst fear is that I will die alone because no one wants to be involved with someone who's mortality may be shortened. Should I even be thinking about this?

Sometimes my positive outlook takes an inward nosedive to bitterness in the land of "why me?" Sometimes I think this is the reason I have a low tolerance for whiny people and people who have everything and yet still complain how awful their lives seem to be compared to the rest of the population. Maybe it's just my attitude.........period. I am not certain of all my thoughts and feelings but I deal with them on a daily basis and decipher them as needed.

I will deal with this newest ordeal and return to the "normal" me shortly.......................I think.......hmmmmmm. :)

ANGELO DE GIOIA

24 comments:

TICKLEBEAR said...

sorry to hear this got worse, but is it permanent, the tank and the tube?

as for your romantic life, who knows? would you date a guy with a tank? if so, you know where to look!! next time you go see your doctor, check out who's in the waiting room...

i know i'm a whiner to many, as my problems are non-apparent, except when the ambulance comes to my place and takes me out, writhing on the gurney and delirious with pain. that caused some commotion every time, despite my wish for discretion. we all have a different threshold for pain...

but why did it deteriorate at the age of 40. did you suffer a trauma? i expect you don't smoke. did an allergy weaken your pulmonary system? or is the climate or the pollution detrimental to your condition?

at any rate, good luck!!
:)~
HUGZ

Angelo di Gioia said...

Ticklebear...we (my doc and I) are playing it by ear. The next time I see her in 3 months we will see how my lung function has improved...if any :)

I agree, we all have a different threshold for pain. May I be so bold as to ask what it is that brings on these attacks of delirious pain my friend? If you don't wish to reveal it I certainly understand your privilege of privacy.

Actually, I guess it was because I finally had a name for it and it let go of the secret. Honestly I don't know why it decided to slide downhill at that age. Maybe a reference to that old joke about being over the hill at that age...lol..I don't know.

All of the conditions you mentioned have had a hand in the underlying causes of deterioration but non more so than the constant lung infections which destroy the alveoli (air sacs), which in turn makes me able to take in less oxygen. Also, in being honest, I smoked for several years in my twenties, not realizing I had anything at all wrong with me. Hindsight IS 20/20 :)

Thanks for the inquiries and wish of luck.

+hug

ANGELO

Wilmaryad Oscallas said...

I trust you'll be all right, my briend :) Was SO much fun talking with you today! Just like old times :)

BIG HUGS

Angelo di Gioia said...

@ Wilmy......yes my insightful briend :)...it did seem like old times and I realized I had missed that!! I truly believe....lol....it WAS fun! You always know how to make me laugh and feel like I can do anything.

HH <3

daleen said...

Hi Angelo

I have Ks.... and well I live it. I live in South Africa and we are only 5 females that I know off. Mine was diagnosed when I was 10 and since then I had though rough hard times, but the good times were beter. I want to share a secret with u.. I am very afraid of using oxygin ..... I believe I will hate it as well as learn to life with it. My lung capisity is 39%. I live an active life. Adopted a girl of a halfbrother of mine and work half and sometimes full day in a chemist as a stock manager. I turn 40 on June 21st.

Angelo di Gioia said...

Hello Daleen :)...thanks for stopping by my blog!

I appreciate that you shared your personal thoughts with me. You are the first person I have ever come in contact with that has the same disorder I have. Like you, I have had an active life and plan to carry on that way...with or without the oxygen. At this point I have only 23% lung capacity so I feel I must use the oxygen. I am a fighter and usually have a positive outlook so this has helped in my decision. Although I hate it I am dealing with it because I love life :) Everyone is different in the way they handle things.

Has your doc suggested O2? Do you get many lung infections? Do you take supplements? What about exercise? Sorry for the questions but since you are the first person I know with this disorder, you are the winner in the comparison lottery :)

By the way, 40 is just a number my dear :) I will be here to wish you a happy one though. Again, thank you for taking the time to read my post.

ANGELO

daleen said...

Hi Angelo

I am very happy to be the winner of the prize...

Let me first tell u who I am and what had happen up untill now. What I hate and what I love.

Firstly - please excuse if my english are not top of the class - I am Afrikaans..

I live in Oudtshoorn in die Klein Karoo where the Kango Caves and Ostriches lives. My husband is a Captain in the Police Service and my daugter Anke is nearly 4. Sometimes I think she is more like 40.
I am living with KS and enjoy all things I can and got the energy for.
I used to cycle with my husband on a tandem, but sometimes I just rode on my on bike. I have done 5 big bike races after the doctors told me in 3 years time I will be in line for a lungtransplant. (With I cannot get anymore because my sinusses are very ill and they can kill my new lungs). Well that was 7 years ago, and still going strong. I was supposed to be using O2 by now, but then again - I am different.. in everyway. I do get infections but
I go for phisioterapy about 3 times a week and then I also like to take my Bull Terriers for a walk. Actually they take me for one.
No 40 is huge - dont u think - the doctors told my gran I will live untill I turn 16 , 21 and .... now I am turning 40 w o w. Its a big thing for me. I want to celebrate it in a hot air balloon in the middle of winer.. Crazy????
I love music - anything but most of all - Bon Jovi. I started to wear earphones in September of last year. I die if I cant hear music...I only know of 5 other women in SA with this illness. The eldest one died last year she was 42. She had an infection and then suffocated - she was on O2, but the infection was so bad that it didnt help at all.
Do u go on facebook???? Love to chat more.

Where do u live and what is the time there??? It is now 19.15 SA time.
Cant wait to hear from u -
Lots of love
Dalene

Angelo di Gioia said...

Dalene~

It helps to talk with other people who have the same disease because you see the same things through different eyes and experiences. I wish I had known earlier what I had. I would have looked at my life differently although I do have a zest for life and always have.

I believe you have to find your inner source of strength in order to fight this thing. I have decided that I want to exercise at the gym to improve my breathing capacity and I am going to start on a supplement regimen that gives me the vitamins I am lacking because of this disease. It seems like you already possess your zest for life as well :) I am glad to hear it! :)

Yes, turning 40 when doctors did not give you a chance to reach 16 and 21 is something to be excited about and celebrated. I think your idea of the hot air balloon is a fabulous one!!

It is now 5:53 in the evening here. You may be 5/6 hours ahead of me. You may be sleeping by the time I am leaving work? I like hearing from you and you sound like a very nice woman and one who has it all together. I hope your day is going well :)

HH~
ANGELO

daleen said...

Hi Angelo

Yes I am a wonderfully fierce redhead.... I am very difficult if u lie and are dishonest with me.
I had a rough childhood - raped and abused by my stepdad and abused by my mother, but what the hell - life just kept on handing all that was bad... an illness a grandpa that was drunk but teached me the best things in life. A childrenshome and then no children, lost a part of my right lung and so it goes on and on.... but hell what a ride...
I am alive. I am happy and I can still breath on my own. I meet wonderful people such as u and sometimes i got a lot of pain in my left lung - but hey - Lantogestic seems to do the trick.

daleen said...

I have written a long letter to u and the was told it is to long.. and somehow deleted it all. now I must rewrite everything, but I will sometime later. Do u have an email address or are u on Facebook??? Let me hear from u soon..
Laugh alot and smile with your eyes - life is so short when u are us..

Love
Dalene

Angelo di Gioia said...

WOW! Dalene, I can't imagine going through ALL that and still being happy. You are an amazing women and I am glad to have met you :) I have gone through a few things myself but also tend to keep things to myself until I feel the right time to present them. Don't get me wrong, I am on the contrary a happy guy. :) I love life and follow these 4 guidelines:
1. Simplicity is key
2. Love yourself
3. Laugh everyday, especially at yourself
4. Have hopes and dreams :)

You are right when you say life is so short when you are us but also , life is so short.....period.

Since I can be such a private person I would prefer to have you let me know your email address and then I will contact you...is that okay? Also, what is Lantogestic?

HH~
Angelo

daleen said...

Sure please do. My email is daleensmile@vodamail.co.za and Lantogestic is a painpill that helps dealing with the pain in my left lung.
Today we just packed up and left for a weekend by the sea in a friends home. It is so nice - the sea and sand the weather is great and we watched people caught fisg and threw it back into the sea. We ate calimari and chips and came back to rest.

daleen said...

Something is brewing - I drank some coffee and ate some grapes and suddenly I felt very naused and vometed. Infection starting to move in..well nothing new I just hope that I feel well enough to get through the weekend.

Have a nice day / night. I am going to slaap now so that I have energy for tomorrow.

Love
Dalene

Angelo di Gioia said...

You poor dear Daleen...is it Daleen or Dalene?......I hate how it can ruin and get in the way of life. I hope you are feeling better today and able to enjoy the rest of your trip. My thoughts are with you and sending a big hug your way as well :)

I too have found that sleep is a very important factor in helping me get better when I have a flare-up. I have to say though Dalene, from what you have told me the last week and today, I think you have a worse case than I do of this disease and for that I am truly sorry. I really applaud your outlook and wish there were more people like you in the world :)

HH~~
ANGELO

daleen said...

Hi Angelo
Today was a great day. I went sunbathing and fishing on the habour wall with a handline - no fish though. Andries caught 2 and told Anke she caught the, we had a lot of fun. Bit cooler after we took a nap, I felt as if I coughed more than sleep... but we went back to the beach and enjoy the rest of today..

daleen said...

Yes I am worse than most with KS, over here, because I had a part of my right lung removed. I get quite a lot of infections, but go for phisioterapy about 3 x a week to help me cope. Get fed up most ofthe time, only take a breath and the go back to the sleph of routine.
I drink some anti depressants and an antibiotic the call Erethrimycin. 3 times a week. It help to fight of some of the other bacteric except for the Pheusedumonus that lives in my lungs.

daleen said...

I am doing worse also because I have the full blown KS - everything is on the otherside not only my eart and there are no cillia present. My lung left deteriotate and give my heart a hard time - but lucklily I am still okay enough to look after our adoptated daughter. Life is so tough sometimes, but it is so much worth it....

daleen said...

Hope u have a beautifullllll week. I only start to work on Tuesday for we have some public holiday. Then it will be rough because we have the big ART festival in OUDTSHOORN and it is always huge. lot of drunk youngsters and old men with little girls... Where are these childrens parents? Loud music - mostly Afrikaans and some goods plays. Enjoy this week and take a deep breath when u feel like stopping.
If u dont mind - tell me more about how u became ill - on my mail if u want - only if u want to.

Hugs and kisses
Dalene - of Daleen in Afrikaans

daleen said...

Hi Angelo

Hope u r doing okay. I am much better and the festival is in full swing in our town and it is work and the merrigoround in the evening with my girl. Hope to hear from u soon. Love
Dalene

Angelo di Gioia said...

Karma! I just sent you my promised email :) My email will explain things. I am glad you are much better Dalene ;)and it sounds like you are having a lot of fun....I am happy for you!

HH~
ANGELO

Mac Callister said...

im sorry to hear that,but i admire your positive outlook,continue to live your life as normal as you can...and i do hope you'll feel much better soon...take care man.

Angelo di Gioia said...

@ Mac Callister...thank you so much for the nice message :) I am blessed to have such a positive outlook and being surrounded by people who love me. Again, thanks for the well wishes! Take care :)

Trina said...

Hi Angelo I too am so thankful to have found your story. And I love your passion for life I hope everything is going good for you and you're feeling okay. My husband has KS and we just found out last week. I'm just trying to get as much information as I can right now. We've been in the hospital most of last year cause he's been getting worse by each month. He's only 27 so I have so much hope in my heart now that I see the wonderful life you and Darlene are able to live. Thanks for blogging about this.

Tery Bellew said...
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