Hello Everyone

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dying2live

New member
Hello everyone! I wanted to take a minute to finally introduce myself. I have been hovering and posting a little over the last two weeks. My husband found this group for me due to some depression I have been going through due to CF complications. I have to admit that this is exactly what I needed. It is so nice to know that I am not alone in this. I have spent hours reading past post and just absorbing so much knowledge that no one around here tells me. I have learned more about my own illness from this group then I ever get out of my doctors. I wanted to thank everyone here who has made me laugh and who have raised my spirits in the last week.

Anyway, I am 29 years old and live in Colorado USA at an elevation of like 5400 feet. Makes it terrible for oxygen levels (I am permanently on oxygen) but I don't have to worry about humidity LOL. I am married to my High School sweetheart and we have three beautiful children. My lungs are at 35% though I have had to fight very hard to keep them there over the last year. I had my Gall Bladder remover a little over a year ago and caught Pneumonia three days latter and went back into the hospital. Ever since then it has been one cold after another. I just finished another round of IV antibiotics two months ago and my lungs are just not fighting back as well as they use to. I know it just takes time and a chance to heal but it's scary too. It also didn't help that my veins were basically shot and it took seven attempts to get the pick line in. Doctor wants me to consider having a port put in but after reading here that lifting weights can help I have decided to try that first. I also learned that exercise can help bring up lung levels and I am very excited about that. I started exercising last week and already have noticed an increase in mucus production.

I stay at home caring for our three little ones Drake who is 8, Alexandra 6 and Rebecca who will be 4 in July. I also sculpt dragons, unicorns and many other fantasy and woodland creatures and sell them on Ebay to help our family pay for all my medical bills. Insurance is great but $50 co pays add up.

Well, that is who I am and am thrilled to have found such a great and humorous group.

Katie
 
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JazzysMom

New member
Welcome to the forum....sounds like you have your hands full with the little ones & keeping up your health! Hope to hear from you more!
 
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anonymous

New member
Welcome, Katie.

It is a great group, and i too have learnt alot since coming here and have also met lot's of great people.

Take care Eli (not logged in)
 
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Emily65Roses

New member
Well I personally am thrilled to know you found us here, and are glad you did. That you've gained a few laughs, and lots of information from us. It's nice to hear. Anything you ever want to ask or say, feel free. Welcome to the board as well!!

While I'm here, can I be a bit nosey? Your PFTs are down to the 35% range. Have you considered your transplant options? I know they generally start evaulating your transplant options when you get to and stay at roughly the 30% range, and was wondering if anyone had spoken to you about it. It sounds like, from what you said, that your doctors aren't too helpful with offering information.
 
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NoExcuses

New member
Welcome!

I, too, have learned such a great deal from this forum.

May your learning be endless and your breathes be deep! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

dying2live

New member
Actually when I was in the hospital last the doctor asked me if I was even interested in it. Well, I'm NOT interested in dying so of course I'm interested in a lung transplant. I am terrified of a lung transplant but if that is what it comes down to then that is what I will have to do. Around here they start evaluating you for one when you are in the low 20%. I am determined to fight with what I've got though for as long as I can. After reading what to expect when you wake up from surgery I have an even greater desire to exercise more.

No my doctors don't like to tell me anything until I get it. I wish there was a manual somewhere with easy to read descriptions of everything to look out for with CF. No one told me I would get stopped up with poop until I had a blockage the size of an orange. No one told me I would get gall stones until I went ten months without them figuring out what was wrong with me and loosing almost ten pounds. Until a year ago out CF clinic only had doctors who were use to children and didn't know much about us adults. Now we have this cool new doctor who specialized in adults but he doesn't give out information unless you specifically ask for it.

Katie
 
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Emily65Roses

New member
I don't suppose you have any other clinics close enough nearby that you could switch, huh? I wouldn't stay at that clinic voluntarily if I were you. <img src="i/expressions/face-icon-small-mad.gif" border="0">
 
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dying2live

New member
Nope, the next nearest one is a two-hour drive and they only have clinic once a month and the wait to be seen is terrible. All the doctors from there come down here once a month to see everyone down south but it is still the same group of doctors. The New CF adult doctor is really nice and the best doctor I have ever had (which might actually be a bad thing LOL). He always has an answer and tries new meds that work better I think. Just no one around here does any preventive measures. There is very little info about what I should look out for. In fact there are several illnesses mentioned by members of this group that I have never heard of.

What is Cepatia (hope I spelled that right).

Katie
 
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Emily65Roses

New member
It's cepacia. Burkholderia cepacia to be exact. It's a type of bacteria that CFers get (though it's one of the rarer ones). It tends to be a bit of a b*tch. That's an understatement. It's basically the one the majority of us fear the most.

As for not being able to switch clinics... I'm glad you like your new doc. And maybe we can fill in for the "volunteering information" problem. If you're unsure of something, come here and ask. We'll tell you what we know, and you can take what we've told you to your doc and ask if the situation calls for it.
 
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JennifersHope

New member
Welcome to the group. So nice to have you here. I would love to here more about your art projects and stuff.

Three kids and doing art you must be busy. Read all the posts you want ask all the questions you feel too. We are here for you and will help you along the way as you help us as well

STay around,

Jennifer
 
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dying2live

New member
Emily, I have pseudomonas and have become resistant to Tobi and maybe even Cipro. We aren't sure about the Cipro yet but taking it every other month for six months the last time didn't do any good and I had to go into the hospital. Hopefully with some rest my body will accept it again.

Jennifer, yes I am busy but it is so worth it. Being a mom was all I wanted to be when I was little and being an artist was the career I wanted. Great thing is I can do the art thing when I want and it is more playing so it is relaxing and therapeutic, not work. If I didn't sell them they would over run the house. I have two display cases full of finished and half finished projects. I sell my art on Ebay under the seller name EnchantedBeings. I have a website that is under construction at www.EnchantedBeings.com . I also have several pictures of my sculptures published at an online art site called Elfwood. You can view my stuff here <a target=_blank class=ftalternatingbarlinklarge href="http://elfwood.lysator.liu.se/art/s/t/steffes/steffes.html">http://elfwood.lysator.liu.se/...t/steffes/steffes.html</a> .

Katie
 
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JazzysMom

New member
Hey Katie....I read that you are becoming resistant to Tobi & maybe Cipro for your pseudomonas. I was wondering if you only have 1 strain of it. Last year I cultured a new strain which is resistant to Tobra so far, but all else works well & the 1st strain still responds. I was just curious is all! Again welcome & your hubby also!
 
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Emily65Roses

New member
Pseudomonas is the most common bacteria we get from what I understand. I've got 2 or 3 of them, myself. I also have staph and MRSA (resistant form of staph). So far I've been lucky enough to avoid cepacia. I myself am also mostly resistant to Cipro. They still try it every now and again, but all it does is tear up my intestines. <img src="i/expressions/face-icon-small-tongue.gif" border="0">

TOBI doesn't work for me either, mostly because I can't tolerate it. What nebulized meds are you on regularly? There are a few new things floating around that seem to be doing lots of good for some people that I'd be happy to tell you about, if you're currently unaware. Hehe. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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dying2live

New member
Well, until I got on here I never knew there was more then one type of Pseudomonas so I have no idea if I have more then one strain of it. I have been taking Tobi for at least eight years though it may be longer. It was a year ago when I got the pneumonia after the gall bladder surgery that they found out I was resistant to it. I really hate it. I get soar throats and loose my voice on it constantly and it makes my chest so tight I feel like I can't get a deep breath. I've told my doctor but he insists I need to keep taking it because it is so strong it kills of all the other bugs I might get. I like the Cipro because usually I can feel it working in a day. I just clear up on it quick so I was very sad to hear that I may be coming resistant to it as well.

As for nebulized meds I take xoponex, hypertonic Saline and Pulmozyme. I just started the Hypertonic Saline about two months ago when I ran across it on line and did some research about it and when I asked my doctors they said I could try it. I am only using the 3% solution but I love it. I have gotten more broken up and moved out then I have in a long time. It even seems to counter act the soar throat and lost voice from the Tobi.

Katie
 
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littlemisssilly

Guest
Katie,

Welcome, welcome, welcome!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

Good to have you on board..... three kids ? Wow! Where do you get the energy from? I don't have any children and am exhausted most days as it is!!

Do you mind if I ask you a question? How did you health / body tolerate having three children? Did you notice any change in your PFTs during or after pregnancy? What about your energy levels?

Sorry for being intrusive, I think I'm at that age now where my uterus just keeps on calling!! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
R

Renegade

Guest
Hello dying2live,
Love your name. Welcome I hope you can find what your're looking for here. I've always wondered about people eith CF living at higher altitudes. Does it feel like there's someone sitting on your chest? Is there a Cf Center near Colorado? Good luck. It sounds like you've got your hands full at home.

Renegade 40/y CF - Cepacia since 1996
 
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dying2live

New member
LOL littlemisssilly my uterus is still calling. If I was healthy enough I would LOVE to have more but right now I have to live for the ones I have. I had to stop holding babies about two years ago because they just made my heart get all up tight and then I would get sad and depressed because I knew I was done, for now. I have that little bit of hope locked up secretly somewhere that some miracle will come along and I might have another chance.

My first pregnancy my lungs were at about 55%. My pregnancy was just about perfect. I had some early labor that had to be stopped but that wasn't CF related. I had no problem breathing and delivered without any complications. Lungs were just as good afterwards as before. With my second pregnancy I think I was closer to 50% at the time. Again I carried her without any problems and delivery went better then my sons. At the same time it was to push I started having a coughing attack. Their stupid breathing techniques mean absolutely nothing when your lungs get an itch. Three coughs and she was out. My lungs got a little worse after her but I think it was laziness on my part not because of the pregnancy. With my last pregnancy is where the problems came in. I wasn't as healthy as I should of been starting out and about six months in I caught something that just tore my lungs apart. I felt like I was suffocating. I was put on oxygen and had IV care. I can't remember the drugs I was given but they made sure they were safe for the baby but unfortunately they were not as strong as I needed. I got a little better but stayed on the oxygen until the end of the pregnancy. Her delivery was miserable. I was already week and drained then 20 hours of back labor. I think I would of happily died right then. Again those wonderful strong stomach muscles pushed her out rather quickly and I took my first deep breath in months. It was wonderful. Within an hour my oxygen levels were doing much better and two months latter I was doing rather well. Not as strong as I was before the pregnancy but feeling good and off the oxygen. Not really sure when my lungs got down to 35% but I have been here for about three years. Until this last year it really hasn't interfered with life. Now I am fighting to keep them where they are.

Katie
 
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julie

New member
Hi Katie,

I've seen you posting, but wasn't sure if you had already introduced yourself and I had missed it, or if I just forgot. Welcome to the site and it's so nice to see you've been psosting!!!
 
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