Son diagnosed with M.Absc and I'm desperately worried.

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Son diagnosed with M.Absc and I'm desperately worried.

Postby sorus » Tue 20 Aug, 2013 16:17

Hello everyone. I'm new to the board although not new, sadly, to CF. My son Angus has CF and he's 19. He's been doing reasonably well till this last few months when his lung functions started to drop without any real explanation. He has recently cultured mycobacterium abscessus and I am beside myself with worry.

He was due to go off to university next month but he has now deferred it for a year. We understand the treatment for this bacterium is long and arduous with absolutely no guarantee that it will work. Indeed likely not to work. We also understand that if this bug is not eradicated then my son won't be eligible for a lung transplant.

So at the moment it feels like my world has ended. I hate the thought of my son having all these highly toxic drugs pumped into him but I know there's no other option. I feel scared and so very, very sorry for my son who was so looking forward to going to university. My son is very stoical and never gives away much how he is feeling. It is me who has fallen to pieces although normally I'm quite strong. I should say that I lost my first child in an accident so memories of that are probably tied in with my fear.

I know this is a long post and I'm not, personally an adult with CF (I have also posted this on the parents' board) but I am hoping that someone, somewhere can give me a little bit of hope that this thing can be beaten. I will be so grateful for any replies.
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby mothy » Tue 20 Aug, 2013 19:01

Hiya, welcome to the board though sorry you've come to it in such scary circumstances. I'm afraid I don't know anything about M. Absc, I hope someone else comes along with some ideas. It all gets a bit much doesn't it, when life as you know it and all your plans get turned upside down. Thinking of you
Kathryn x
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby Spangler » Tue 20 Aug, 2013 20:52

Hi Sorus, sorry to hear your son has grown this horrible bug. I grew this one too a couple of years ago when I went through a rough patch health-wise. I can't remember how long I had it for, but it was probably for a few months. I don't know why, but the decision was made for me not to start the rigourous treatment to eradicate it, but I did make some changes to both my lifestyle and to my medication since then; and at clinic the other day my Doc was remarking on how it hadn't appeared in any of my sputum samples in well over a year.

I had been on promixin with the i-neb, but came off that and went onto nebbed meropenum. I had been taking oral anti-fungals for aspergillus, but came off them, and I reduced my dose of seretide inhaler from 500 twice daily to 250 twice a day. I gave up my part time job and as a result my stress levels decreased, and I concentrated more on exercise and generally taking my time over things.

Since January this year I started taking extra vit C and a garlic capsule daily (although my vitamin levels are usually ok even without these), and from March I have been taking the colloidal silver daily (I think it has helped me to avoid bugs and to recover quicker from the ones I do get).

There are of course still other meds I take daily, but I just wanted to list the changes I made in case it is of use to you. Who knows whether the M absc would have disappeared on its own anyway, or if indeed the changes I made did help, but I just wanted to let you know what happened to me. It might be worth you asking for some more info from the consultants about how other patients have managed with or without the treatment, and if they have any other data about patients from other hospitals (I go to Wythenshawe). Good luck to you and your son, and I hope the M absc disappears as quickly as it came.
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby caza » Tue 20 Aug, 2013 21:33

Hi Sorus I was diagnosed with Mac Avian in about 2000. I know not the same as your sons but of the same bacterial family i believe. For quite few years they didnt treat it - saying the regime was quite severe etc. However eventually i was quite ill and started off on ivs and then two other antibiotics - Rifampacin and moxifloxacin. I was on the two orals for nearly 3 years think it was. At first it was quite difficult on them but gradually i got more used to them and coped ok. It did clear the Mac Avian and i been clear year or so but then it showed up again in my sputum twice and now apparently it not showing up. So could just be dormant. Anyway the thing is - it did make quite a difference to me and cleared up my lungs quite well. I wish they had now started me off on it earlier. Good luck to your son - it not so drastic - although as i say mine was slightly different strain.
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby sorus » Wed 21 Aug, 2013 17:10

Thank you SO much for your replies. Seriously - they have helped calm me down. Helped me think that perhaps this isn't the end of the world as I have been thinking up till now. Angus has upped the amount of garlic he has and also I've started him on colloidal silver. It's worth trying anything (as long as it's safe and doesn't alter in any way the effect of pharma meds he's taking) is my opinion.

We are waiting for a CT scan and then he'll be going into hosp for IV's, to be hopefully continued at home once they've established he's not feeling too ill on them.

One thing of interest the physio said today: Angus's M.Absc only came to light because he has just had an annual review. I naively assumed that every sputum we send in gets tested for everything. Yes I know, in retrospect I was probably being a bit dim... So it means he could well have been growing M. Absc for up to 12 months and in fact his lung functions have been dropping inexplicably for about 10 months. Scary really. Why on earth don't they test for the really nasty bugs more often, when it is well documented that the earlier it is caught the more likely you are to eradicate it? I would be quite cross if it weren't for the fact the CF team here in Cornwall are in all other respects excellent!
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby madmags » Wed 21 Aug, 2013 18:36

Hi Sorus,
My daughter grew M Absc at the end of last year. She had just begun her second year at uni studying physiotherapy (of all things!) and I thought it would be the end of studying for her. Luckily , she broke her leg in October, so had to miss her hospital placement. This meant she could start the treatment for M Absc and spent three weeks in hospital on numerous Ivs and amikacin nebs. After her Ivs she was put on three oral antibiotics and amikacin nebs( which seems to be the standard treatment) and she will be on these for at least 18 months. She is determined the treatment will work and has been brill at all her meds! She is having a 10 day gap from nebs at the mo as she is climbing Mt Toubkal the highest mountain in North Africa for charity. She has kept up with all her uni work, done well in her exams and still manages to live life in the fast lane.
I'm not saying it is easy and the drugs have made her feel pretty unwell at times but she is managing.
Good luck with your sons treatment. Good to catch it early and get it treated. I think the Cf guidelines say three positive sputums before commencing treatment but that may have changed.
Maggie :)
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby sorus » Thu 22 Aug, 2013 19:03

Madmags thank you so much. It is so good to hear that your daughter is doing the meds properly and not feeling too terrible on them. And I'm so amazed that she's climbing a mountain!! Did she have trouble getting insurance do you know? I kind of assumed that any holidays abroad would be out for the time being because of insurance being too prohibitive, but your post has given me real hope. Thank you.

I am in general feeling so much more positive and encouraged and that's down to the help I've found on this forum. I should have come on here years ago!
sorus
 
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby madmags » Thu 22 Aug, 2013 20:29

Insurance was tricky!! We could get insurance for altitude or insurance for her CF but tricky to get both covered. ( any trip over 4000m needs extra insurance and Mt Toubkal is 4200m!!!) We eventually got insurance through Js Insurance at about £250 which I didn't think was too bad!
I'm glad you are feeling more positive. like you I felt so low for a long time but this forum has been invaluable to me over the years.
Maggie :)
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby madmags » Thu 22 Aug, 2013 20:31

PS Ill let you know how the climb went. she is back on Saturday. She celebrated her 21st bday out there so big family party on Sunday to look forward too!
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby sorus » Sat 24 Aug, 2013 17:06

Madmags I hope your daughter is now home safe and well! She sounds amazing. Thanks for the info re insurance. Apart from worrying about my son's health I'm now worried he'll sit in his room for the entire year (we moved house 6 months ago and he doesn't know that many people here yet). There is always something to worry about! Oh, and enjoy your party!

And thanks too to everyone else who's told me of their experiences with this particular bug. It has all really helped.
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby madmags » Sun 25 Aug, 2013 19:56

Picked her up yesterday. She had the most fantastic time and managed to conquer Mt Toubkal in style. We had a lovely celebration party today and ( I know I'm her Mum) I am just so proud of her.
Does your son have any interests or hobbies where he can join a local group to meet people with similar interests? Hope everything works out for you.
Maggie :)
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Re: Son diagnosed with M.Absc and I'm desperately worried.

Postby Zow » Fri 18 Oct, 2013 17:53

Hello,

I know this was posted a long time ago, but as soon as I read this my heart went out to you. I can understand exactly where you are coming from, and actually how your son must be feeling as I myself have had this for 4 years now. I am 21 and was given the news at 17. I wasn't too sure whether to take the treatment. I was sat down and told how hard the regime is and how much effort I would need to put in. I have never been shy on drug treatment; actually I would say I have been pro treatment all my life. My Doctor said to me at the time that it was my choice in the matter and that it was not effecting me horrifically so I had time to wait. I waited a few months then decided I would opt to treat. I was nearing 18, I'm 5ft and nearing 9 stone in weight at this point. My lung functions were dropping, but I thought my body was very strong and I would defo be able to take this. Plus the news regarding the lung transplantation option was truly devastating to me. That is right from the heart. I have always believed I may get a second chance at life and never wanted that life line taken from me.

I started the treatment at 18 and just like your son, deferred uni for a year. I knew I needed the focus here; and I was unfortunately so right. For me the Myco has been very persistent in my health and has really stripped me from my former self. Four years of treatment and I have not budged the cultures one little bit. It takes time but the differences for me are very apparent now. I am coming up for 22 and am weighing 6 stone 12 and my lung functions are 40s/50s on a good admission. The drugs are very potent to my body and everytime I go on Ivs I am doped on cyclizine intra venously as I am just sick constantly. I am on meropenem, amikacin and tigecycline when on Ivs. They are brutal but do clear me up for some amount of time. I have these every 2/3 months.

All I will say is your son is very lucky that he has such a loving mother who will give him all the love and support he needs. As he may not show it, but for some of us, It really is a struggle. I sleep every afternoon for at least 2 hours and had to give up employment as I have been so ill. I went to Uni at 19 nearly 20 and had been on the treatment for some time. By now I was weighing 7 and a half stone and had declined, but really pushed on the fact I wanted to go. I didn't listen to anyone, even though my Doctor told me it wasn't the best idea. I went for 5 weeks and came back hospitalised. I couldn't cope without care. I was getting so tired and skipping meals, being sick and not telling anyone. I just wanted to fit in. The on campus doctors were useless. I was a mess. In the end I was stuck in my room day and night and could not get out to get food or drinks. People forgot about me as they thought I was unsociable. And I didn't know what to do. Four hours away from home. No car. No energy. Nothing. I thought I was going to die. I was admitted for 6 weeks, but somewhere I managed to get better. The first week is blank to me even now and I don't know how I did it, but I did. I ended up with pneumonia too. Very very lucky. I was in bed for months afterwards, my parents did shifts with me, cooking me meals, washing me, giving me my medication and physio. I honestly have no idea where I would be without their support. I lost my job, my education, my health, even my long term boyfriend left me. But I came out of it. It is not something to be taken lightly.

I still go through ups and downs with it now. I have just come off Ivs and had Ivs 3 weeks and a half prior this batch. I struggle everyday and the only way I can describe my lungs is like a thick black cloud. It's never productive for me, but very wheezy and crackly. I went through a stage where my phlegm changed in taste, so that is something to look out for and my energy levels are shocking at times. I am and have been a very tired person.

Do not get me wrong I will not let this defeat me and I believe I probably am I worse case scenario, but it is so important to take note of everything. It is no use saying everything is always hunky dory, because it's not. I am in touch with Brompton constantly and am in fact going up there for a review this month to discuss another path. Dr Bilton is a god send! Please if you do not know this lady, get in touch! I am from Cornwall and my goodness has her expertise been an inspiration.

The treatment regime is not for the faint hearted. And it is a regime where once you start, missing anything is not an option. The more you break the treatment cycle, the bigger the chance the Myco will become resistant. And I can't stress the importance of this. Food is another thing and not eating is detrimental, if Myco strikes the weight will fall off and that extra is really the difference between hanging in there. I would suggest getting an E-flow if you don't have one. The nebulised meds are so thick and gloopy they wont go through any other device. And the bog standard you lose half out of the window!! I would also suggest bone density becomes important to be checked. The Myco and meds have made my bones very weak. And I am going to be going on infusions... They are pain free and strengthen bones. This is just as important. Brittle bones also lessens chances of transplantation, so I've been told.

There is no reason why your son can not be in an excellent condition, but please do not end up in the trap I did. Ask questions, make sure he eats good food and really puts 110% in. That means rest days. At Uni I did party more than my body can handle. Limits are so important. And you really seem like an excellent mother. It is so hard to tell your children what to do when they reach adulthood, we all think we know best... but we dont! I wish I listened to my Mother and took all the support possible, perhaps if I did I wouldn't be in such a sorry position. It is your care and support that will get him through this, all I can say is have your wits about you, and if you're not happy with something, don't let it drop!!

I do hope it all works out. Wish you all the best :)
Here's my email if you need help or want to discuss anything: zowietina@hotmail.co.uk
Zow
 
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