Im new and I have a question

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mandymulay
New Member


Date Joined Jul 2007
Total Posts : 6
   Posted 7/20/2007 6:58 PM (GMT -7)   
Hi everyone! Im 31( soon to be 32) and i have CF. I was lucky to not be sick until my 20's but it is catching up fast. I have pseudonomis and it seems evrytime  stop my two to 4 weeks of IV's within about two weks I get sick again. I'm going to a Infectious disease dr will he help or am I doomed to be sick forever?  I am also at the point that I need my first port. I am scared of it and I'm not sure were to get it, because I am still vain, even though I may be sick alot :)
I have delt with alot of discrimination with jobs and school about my CF, and I am more than happy to discuss anything. I am on my second marriage, the divorce had nothing to do with my CF. I wonder if any of you married CF women ever feel guilty about getting involved with some one knowing you are going to leave them prematuraLY. also the dreaded question who is the oldest Cf here?

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/21/2007 3:48 AM (GMT -7)   
Hi Mandy!

I also have Psuedomonas all of the time. It's a right pain. I'm going to start having IV's every 3 months, whether I need them or not, and possibly 2 weeks of Oral Ciprofloxacin, if I'm struggling before my next lot of IV's.
How many IV antibiotics are you on at a time? And are you on the same all the time?
Sometimes a rotation of a couple of them is needed.
I always start to feel a bit sticky lunged again, a couple of weeks after IV's. I just try to make sure, I remember all of my physio sessions (which isn't good, when you have a brain as useful as a cabbage for remembering things.)

I have a port-a-cath on my chest wall, it's not really visable when it's not accessed, and holds the least infection risk. It's just like a bump under the skin.

I'm going to get married, the end of next August, yes I do feel VERY guilty about it at times. We had the discussion again last night, as he's also taking on my depression and a currently unknown muscle condtion. I feel guilt all the time, thinking I've forced him into it somehow, but he says not.

I'm only 21, so definately not the oldest:P I'm not sure who the oldest is on this site, but on another site I go on, there is someone at 45! And apparently someone in there 60's.

Hope this has answered some of your questions, and helped in someway. Feel free to quiz us all you like, till you get the answers you need.

Oh, and last of all, welcome to Healingwell:)


Co-moderator in the: Cystic Fibrosis Forums
 Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
Had a Port-a-cath fitted on chest wall since 11th Nov 05

Post Edited (Darkies Gem) : 7/21/2007 4:50:24 AM (GMT-6)


mandymulay
New Member


Date Joined Jul 2007
Total Posts : 6
   Posted 7/21/2007 7:46 AM (GMT -7)   

Thanks for the info. Once you get Pseudonomis am I going to ever be able to get it under controll again?? Does anyone out their know if anyone has had it and gotten rid of it enough to function?

I have always been on atleast two types of IV's at once. I don't like to take the cipro line, becaause things I have read siad that it can be the cause of my muscle pain. The doctors just ignore me when i say this.

As for your wedding, Congrtat!! My husband is weonderful about my CF I know he gets discouraged sometimes, but he is supportive. I just wonder some times if he really understands that I am never going to get over it, and other things..I try not to say. I am not good at doing my routine meds, because I went for so long with never bieng sick that I feel like none of it helps. I also work ful time and am going to College full time, so being sick is a little inconvienient :)

Thanks for the info on the port, have you heard of anyone having one in their elbow?? I heard of one just wondered how it would work out.

Thanks 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/21/2007 3:45 PM (GMT -7)   
I think the idea is, you CAN keep getting rid of Psuedomonas, in the begining. If you have 3 sputum samples in a row though that say psuedomonas, and you're on antibiotics to get rid of it. They diagnose you at colonized with Psuedo, which does mean you won't be able to rid of it, only keep it under control.
Generally to prevent it causing problems a lot, you will be put on a nebuliser. You will have nebulised antibiotics. Over here in England, it's generally either Colomycin (AKA Colistin, Promixin) or Tobi (Tobrymycin). I found these used to work really well and keep me off IV's for longer, until my allergies to both antibiotics got worse.
I can't tolerate colomycin through IV anymore, it makes my tongue swell and I go all itchy, through nebuliser I just go all itchy. Tobrymycin I can have IV, but nebulised it destroys my throat.
As soon as Psudo starts to show with me (about 4 weeks before doctors can tell) my lung function drops, ever so slightly. After 4 weeks of moaing about it, by lung function has dropped by about 20% to just 70%. after 2 weeks of IV's, it goes up to 90%.
I think because i spot the signs so early, and have my course of cipro, it doesn't hit my lungs too much.

Doctor's generally just ignore me too, I really have to hit them round the head a good few times sometimes to get them to listen. Then they realise I'm right, and promise me that the next time I'm in hospital, I will get my favourite room. Wrapped around my little finger I have them.
There may be a reason why a doctor doesn't think there the same muscle problems though. When they first started to actually believe me about my muscle pains (took about 2 years) a pharmacist and doctor went through all my medication, and discussed the possibilties of certain medication being the trigger. They cancelled Cirpo out, and I know there was a specific reason for it, but I can't recall. Question your doctor about why he doesn't think it's the cause, and what could be the possibilities. Hopefully he'll be able to help you.


I'm getting better at doing my meds. I still struggle though with the tablets that don't have an immediate effect. Like my vitamins and Ursodeoxycholic Acid. I never miss my enzymes, as if miss them, I suffer too bad.
Co-moderator in the: Cystic Fibrosis Forums
 Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
Had a Port-a-cath fitted on chest wall since 11th Nov 05


mandymulay
New Member


Date Joined Jul 2007
Total Posts : 6
   Posted 7/22/2007 10:20 AM (GMT -7)   
Thanks for your info. I am curiouse about the thes two meds u take, I have never heard of them and wonder what they are for.

Ursodeoxycholic Acid, Colomycin (AKA Colistin

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/22/2007 12:23 PM (GMT -7)   
Ursodeoxycholic Acid-A general medication given to people with CF related liver diesease or liver cirrhosis, or whatever name they decide to call it at the time.
Urso does go under a few different names I think (although I can't remember what they are) But I believe Ursodeoxycholic Acid is it's chemical name.

Colomycin- Also going under lots of different names, it hard to keep track of what people call it now-a-days. I've always known it as Colomycin, Promixin is another brand of it. I can't actuallyremember it's Colomycin or Colistin that's the real name for it.
Just another antibiotic. Can be nebulised or made up for IV. From what I remember, it's good at tackling Gram negative bacteria like Psudomonas.

I also have Ceftazadime via IV, which, while it smells like cat wee, is the only antibiotic that I actually have no reactions too what so ever. Also good for tackling Gram negative bacteria.

And Flucloxacillin, I've been having Orally since I was diagnosed at 2. I'm particularly suseptible to Staphlococcus Aureas. If I come off Fluclox, It's not long before Staph starts showing in my sputum. So they just keep me on it now.
Co-moderator in the: Cystic Fibrosis Forums
 Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
Had a Port-a-cath fitted on chest wall since 11th Nov 05


mandymulay
New Member


Date Joined Jul 2007
Total Posts : 6
   Posted 7/23/2007 9:47 AM (GMT -7)   
thanks for the info. You know how you can earn "life credits" in some college courses, I think all of us should be on our way to medical school...sometimes I think we know more than our doctors:) Have a good week

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/23/2007 10:09 AM (GMT -7)   
Strange, my doctor's just sent me a letter saying the same thing:)

Never be afraid to ask, if I haven't answered something clearly. I love to talk, and love information. Unfortunately, the two combined, mean that I'll babble out a really long post, and end up adding a lot of extra questions into your mind, as I delve too far into answering you.

I love sharing information and helping people though.

I'll attemt to have a good week, and a hope that you have a good one too!
Take care
Gem
Co-moderator in the: Cystic Fibrosis Forums
 Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
Had a Port-a-cath fitted on chest wall since 11th Nov 05


jebediah
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/26/2007 8:14 AM (GMT -7)   
I don't have CF, but I do have lung damage resulting in COPD, so in terms of our lungs we have some things in common. I'm prone to lung infections due to the extra sputum and goop, and I have compromised tissue in there. My only familiarity with CF is that I encounter it a lot in my research.

So, I have some advice regarding some things I've tried. I hope it's not repetitious for you, and even more I hope it can help.

Castor oil packs are a fantastic anti inflammatory, and for me it helps expectoration. Put down some plastic wrap (for kitchen uses), then put a rag, flannel, or thin towel on it. Soak the towel in cold pressed Castor oil. Put it on your chest (over each side, or just one then move it afterwards). Put a heating pad on it so you have heating pad > plastic wrap > castor oil > skin. Use as much heat as you can and let it sit for at least an hour. You can reuse the oily towel a few times.

Earlier this summer I was having a reoccurring lung infection and after three rounds of antibiotics I tried an inhalation therapy with tea tree oil. In three days the infection was utterly gone and my sputum production was greatly reduced. Get the oil from a health food store, alternative health pharmacy, a local co-op with an herbalist, etc (Don't just get the weak stuff from the local big box store). Put it in a bowl of steaming water and use a towel over your head. Breath as deeply as possible for 10 min. Do three times a day. This is a direct application of a strong natural antibiotic where the digested drugs just didn't do it.

Oil of Oregano can help destroy the lung critters (Candibactin AR). Of course so can Garlic (raw and pressed, not pills, not cooked). Olive Leaf extract is another huge gun in that arsenal.

None of this is generally considered dangerous or problematic with most medications, but again I know nothing about CF, so this is all subject to review with your doctor.

Also, I've had excellent results from practicing Spring Forest Qigong (google it). This sort of things runs entirely counter to western medicine and often gets a hostile reception. But results speak for themselves and I've had a great benefit in all aspects of my health. I can't recommend this enough. It's simple and nearly anyone can do it, even in bed.

If any of that helps there is more for expectoration, lung support, immunity support, etc, but that's a big start.

Good luck, God bless you.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 9/26/2007 8:37 AM (GMT -7)   
Hmm, I don't know about the rest of it, but I have heard mixed things about tea tree oil.
You should only use it in a certain concentrated amount, or it can do a lot more damage than good.
I'l try and remember the source where I got this bit of info from. But I remember looking it up when I had a new piercing one time.
Co-moderator in the: Cystic Fibrosis Forums
 
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05


jebediah
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/26/2007 9:33 AM (GMT -7)   
Y, there are reports of side effects and negative reactions from oral doses of tea tree oil. However, these are far greater than what you get from the inhalation therapy. I've found no reports of negative effects from inhalation. (Oh, 5-6 drops should be sufficient in the steaming water, btw.)

There is a standing concern about tea tree oil being used casually in cosmetics and hygiene products because it is an effective antimicrobial. Antibiotic resistance is a growing concern.

Admittedly there isn't a lot of study or "official" support for alternative therapies, but you do have tons of precedent and accumulated practical knowledge to research and apply. No one is a pioneer with this stuff nowadays.

There are limited routines in pulmonology for chronic care. They just don't have great answers to a lot of lung issues yet. I just had a conversation with my doc about that elusive CF pulmonary breakthrough that always seems just a few steps away. So, investigating alternative therapies is absolutely warranted.

Personally there were no side effects, no negative effects whatsoever-- just relief. The advancing damage from infections is a serious concern as well, so I took the chance on the time-tested therapy. I wouldn't suggest a perfectly healthy person use it without good reason, but with lung damage the risk formula is different.

But, definitely *don't* drink it!
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