Thank you

Thank you

I'm a 39yr old single Mother and this is the quick version of my story........ My kidneys failed in labour with my second child 14yrs ago after a couple of health problems. After 2 yrs of medication and diet control I was told I had to go on haemodialisis. After 2 yrs of dialysis I was lucky enough to be called in for a kidney transplant. 18 months after my transplant I was having violent headaches and eventually my slight was so blurry I could see my hand infront of my face. I'd had a reaction to one of the transplant drugs and developed Benign Intcranial Hypertention ( I was making too much spinal fluid, which resulted in it collecting in my head around my brain causing swelling to the nerves of my eyes). After numerous lumbar punctures my vision started to return, but after 6 months I was till having weekly lumbar punctures to relieve the pressure even tho I was no longer on the medication that caused it. It was decided I needed a lumbar peritoneal shunt, to per mantle drain the excess spinal fluid. After a couple of un eventful years, other than the odd chest infection or cold, I developed pneumonia. This was because I was on immuno suppressants to stop my body attacking the kidney, but made me easily get every cough, cold and sniffle going. I was really ill for a long time, I was eventually referred to a chest consultant and was told I had Bronchiectasis and obstructive sleep apnea, around this time my marriage was breaking up so I put these new diagnosis to the back of my head...... I don't think I took the Bronchiectasis seriously because I'd never heard of it. So I didn't go to the physio and told the consultant at every appointment I was fine...... Obviously to me the kidney was more important. Needless to say I got divorced and then my health deteriorated because I wasn't looking after my chest. Now 3 yrs later I have been off work ( I work in a primary school....... I know, I know a hot bed of germs) for 6 months. I have now been diagnosed with asthma and folic acid deficiency and my kidney playing up slightly ( I have to have a biopsy on Monday ). I have felt quite low and all alone with Bronchiectasis and it was only after I went to physio on Thursday I have taken this illness seriously. I stumbled onto this site while googling Bronchiectasis. I would like to say a big thank you to you all, I don't feel like I'm going through this alone and reading what symptoms some of you have makes me realise this is an illness to be taken seriously and I wasn't imagining the symptoms ( I think I thought they were to do with my kidney doh). My aim is to try and get well enough to go back to work soon, even though a school is probably not the ideal place.

Well that's the short version of my story and I would appreciate any advice you are willing to give.

Claire

Xx

9 Replies

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  • Sorry to hear about your problems. I don't have Bronchiectasis myself so I can't offer any advice but I know there are a few on here. I expect they will reply later.

  • Sorry to hear of your problems, but chin up - they are a very knowledgeable crowd on here, and very supportive

    Mucks

  • Dear Clare

    Oh my goodness what a rough time you have been going through. I have had bronchiectasis from the age of 5 months old and I am now 64. So yes it is a very serious condition but it is not a death sentence. Many of us bronchs have other health issues to deal with. Like you I was a single mum from my daughter being 6 and it is not easy when you have health issues, but as you already know you just get on with it.

    I do admire your desire to get back to work, although I have to say schools are not the ideal place for bronchs to be.

    It is sad, but understandable with all else you had to deal with that you weren't aware of this condition and that you have to be very proactive in your own treatment. However it is never too late to start to look after your lung health.

    Please know Clare you never have to feel alone with bronch again.

    I note you have seen a respiratory consultant - very important that he/she has a special interest in cystic fibrosis/bronchiectasis - check this out on your hospital site or Dr. Foster.

    I also note you have seen a respiratory physiotherapist - great news. I hope the physio showed you lots of techniques and you found one which suited you. It is really the most important thing we can do to get up all the gunk lurking in our lungs so it doesn't become infected. Did the physio also show you gadgets such as the flutter or acapella and did you find what suited you.

    I assume you are on inhalers for your asthma (I have asthma too) and probably for your bronch. Do you also have a nebuliser. I ask because I am wondering if the consultant or physio mentioned nebulising saline - saline really helps to loosen up the gunk and make it easier to get rid of. Many peeps take mucus thinners. Personally I prefer the saline.

    As well as this wonderful site you may want to take a look at Bronchiectasis R Us, founded by a young woman (our darling Angel) for sufferers of non cf bronchiectasis. What they don't know between them about bronch is really not worth knowing. I am a member there too, although with a different username.

    If you have any questions please ask - there will always be someone who will come along and either know the answer or point you in the right direction. Or if you just want a chat a pm would be lovely.

    Take care my friend

    Love C XXX

  • Thank you, I'm on clenil inhaler and salbutamol, I don't have a nebuliser but I have a CPAP machine through the night for my obstructive sleep apnea. I was shown how to huff and some breathing exercises because I also suffer dysfunctional breathing. I'm hyperventilating all the time. I go back in 3 weeks to see how I'm getting on with huffing....... The physio said it'll prob take 6 months for her to go throug everything and make sure I'm coping. It's my sons that have got me through the tough times. Often making me laugh and telling me I sound like darth vader when breathing. I rattle a lot too when breathing is this normal? At the moment I'm having a lot of pain between my shoulder blades, even at night in bed, I find I have to support my back with a pillow sometimes, is this normal? I'm determined to get on top of this x

  • Hi Claire

    Wow so glad to hear you have a very proactive resp physio - great news.

    I don't need a cpap but I know a lot of peeps on brus need them.

    Bless your boys - Darth Vader indeed. Laughter is great at getting up the gunk. Funnily enough a bronchi told us using a harmonica is good at getting up the gunk and it's true. You can do fun things which help - do your boys have a tampoline - go for it.

    I rattle quite a lot too and often find a bout of physio helps.

    Can't help re the pain between shoulder blades sweet. Maybe a visit to the docs if it continues.

    Love C xxx

  • Hi Claire, I have Bronchiectasis and Asthma along with a few other probs, like cofdrop I'm also a member on Bronchiectasis R Us, likewise under a different name - it's a really helpful site and has a worldwide membership all sufferers of Bronchiectasis and any accompanying illness. As for the pain between your shoulder blades I get it if I slip down during the night according to my Asthma nurse it's more than like caused by a build up of mucus - it does ease if I sleep (or try) upright, I have an adjustable bed (mainly for back problems) and it does make a difference. Come over to Bronchiectasis R Us you'll find many a friend on there as well as here.

    Karen

    XXX

    bronchiectasis.info

  • I have registered with Bronchiectasis R Us and am waiting to be accepted. I've used the same name so look out for me and say hello........ Thank you for ur advice too xx

  • Hello and welcome Claire. You have been through "the mill" as they say. Glad you found this haven where you'll find good friends and support whenever you need it. Take care Marilyn X

  • Wow Claire, some story! I do hope you take care of yourself and do well now as you have had more than enough to be going on with. I care for my husband who has sarcoidosis and copd and I had not heard of bronchiectasis until I came on here. Good luck to you and wishing you well. xx

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