30 replies to this topic

[jules]

Hi Guys

I thought I'd give you all an update on what's been going on with me, as some of you may remember I posted a while back letting you all know about the lung disease I had been diagnosed with where my SCI had been one of the predisposing factors (among many others). Sadly things have taken a turn for the worse, I mentioned previously that the growth that I had developed in my lungs could make me suffer from life threatening bleeding from my lungs. About 6 weeks ago this happened, when I had a bleed, thankfully it stopped, but it triggered the underlying disease to become more aggressive again.

The upshot of all of this is now I am very out of breath all of the time, needing nebulisers every 4 hours plus oxygen the growths have also started causing me alot of pain. Anyone who knows me knows that I am a gym junkie, obviously this is totally out of the question at the moment, because I am out of breath just getting from my bed to my chair! I also can't work at the moment, which is getting me down.

Really sorry that this seems to have turned into a major whinge, but I am just v. fed up and needed to vent a bit, am also worried that everyone is going to get fed up with me being miserable because I feel so rubbish at the moment.

Again sorry for whingeing.

Jules
xxx

[Bevan-L]

Sorry to hear this Jules, Really hope things make a turn for the best.. be strong no matter what, its not easy but never give up hope

[Trinity]

Jules
I hope you start feeling a bit better soon. You have a right to feel fed up and miserable, vent all you like here!
Throwing lots of good wishes your way
Stay strong

[nomis]

Damn, Jules. That's a real bummer. I know you're a person of high achievement and activity so this must be very frustrating for you. Maybe we can get to hear more from you on the forum. I'd like that. Wishing you well and I wish I had something magical to say cos I do care for you.

[greybeard]

With my "almost AB" condition, I can't begin to understand what you are going through, but sincerely wish you well.

[fatdave]

Jules my heart is with you in this battle.

[araitn]

Jules, I wish the best for you and hope somehow things will get better. Don't worry about complaining..... you have every right to. Please keep us updated.

[jaquie_farmer]

Jules, here is a quote that anytime I feel like I want to give up makes me stronger: "you were only given this life because you're strong enough to live it." Like others have said, never give up. Please complain away here. It's my favorite place to do it. ABs will listen but can't understand fully; we can. I will keep you in my thoughts. Keep rolling girl.

[DaveP]

Hi Jules

What's the lung condition called?

My brother has a lung condition that is very rare - something like only 20 or 30 people in the world have been diagnosed with it. Cysts grow and start blocking his airways - he's had a few removed and coughed up one or two also, plus blood etc.

I tracked down a specialist and got some info. It appears that stress is the main trigger so he has to chill out (an impossible task for him!) and monitor how it affects the cyst's growth.

I can't remember what it's called... will see if I can find the info I got for him... If it's the same condition as you have, maybe this'll help you.
Dave

[Ches]

You're a tough cookie, I know you'll make it, no doubt. Im sorry youre having to suffer, but just like everyone has said youre more than welcomed to bitch/vent all you want to us.

On a lighter note,.. you mention exercise and guess what comes to mind....!

Ill be wishing you well more than you can imagine, take care girl!

[jules]

Thanks for all the support guys it's great to know you are all rooting for me. Dave the condition is called Bronchopulmonary aspergillosis. It is basically a fungal infection of my lungs, mine has been made more complicated because I developed an allergy to the fungus that had invaded my lungs, because the infection was undiagnosed for so long I developed mycetomas which are areas where the fungus destroys areas of the lung and then sits in a cavity, it is these mycetomas that can cause the bleeding. The problem I have is I need steroids for the allergy side because this also causes lots of inflammation in my lungs, but the steroids reduce your immune system so this allows the mycetomas to grow. So it's the ultimate viscious circle. The fungal infection will never go it is too deep rooted, its just a case of managing it, which until I had the latest bleed we had been doing.

Again thanks for the support guys I do really appreciate it.

xx

[DaveP]

My brother's condition was something else - can't remember the name... something long and Latin.

Suppose you could look into boosting your immune system. Ask about high dosage vitamin injections and other things you can do to make sure your immune system is working at it's best, as well as making sure it's not being over-worked in other areas.

How about things like aromatherapy oils that you can burn in a defuser? It wouldn't cure anything but may help a little and contribute to your overall "plan of attack" on this fungus. Oils like pine, euchalyptus, Albas oil etc help to open up the airways... others like lavender act as anti-septic... tea tree oil is an anti-fungal oil, but not sure about defusing it... Again, they aren't cures but could certainly help.

All the best!

[edlee]

Jules,,, That's what we're here for,,, rant or whinge all you want,,, but take care of yourself.
ed

[jules]

Thanks Dave, I am using Olbas oil, very strangely it is a very local product for me it is made at a factory about 1 mile from where I live in Gloucester, so it has always been a one of the first things I have used ever since I was a child, it is just great to know everyone is rooting for me.

Thanks again everyone, this has really cheered me up this afternoon when I was really struggling. Will keep you all updated as to what is going on. I'm about to stress myself out more by watching the England World Cup qualifier tonight, and as any England fan will tell you they are always stressful!!

xx

[russ1]

Really sorry to hear that you've been so under the weather. Hope things improve real soon.

At least Gloucester rugby are doing ok (well better than my team Wasps anyway). Have you been managing to get to see them much?

Russ

[jules]

Hi Russ

Gloucester are doing ok at the moment, I haven't been to a game since we played Lodonn Irish a couple of months ago, that was one of the ways my husband could tell how bad I was because it was me that admitted that I wasn't well enough to go to the games rather than him telling me I couldn't go! The first game I missed I was actually still in hospital I got the nurses to open the window, so I could hear the cheers from Castle Grim!! so at least I knew we had won. I also missed the Wasps game, but I have to really "big up" a group of wasps fans. I don't know if you remember but last year I did a sponsored walk with a group of Wasps fans led by Barney Burnham, I emailed Barney to let him know I wouldn't be going and why, within 24 hours I had had supporting emails and messages on Facebook from all of the wasps fans that we had walked with, which was so lovely for me. Neil (hubby) met up with several of them during the game and they looked after him. I wasn't expecting us to get to the cup final, but we have managed that, I watched the game on TV with hubby trying to keep my quiet, which worked until the Balshaw interception try at the end!!

Shame you couldn't do us a favour by beating B**h for us last night, but nevermind.

Thanks again everyone
xx

[DaveP]

Jules - I had a thought... could it be that you might be using too much Albos oil? Maybe you're using it too often and this is making your airways open up too much, and allowing "foreign bodies" to enter your lungs?

Just a thought that you might want to look into...

[jules]

Hi Everyone

Thought I'd keep you all updated, I am going for a CT scan tomorrow to check on the size of the growth in my lungs, have been struggling alot over the past week. I am seeing my consultant again next week so I'll be able to update you all then. I'll get the results of the CT scan and blood tests next week when I see her.

Again thanks for all of your support it means so much to me.

Jules
xxx

[jules]

Another update for you all, saw my consultant on Friday, sadly no change, the growths are still the same, am still very breathless and tired all of the time. Carrying on with the same medications and seeing my consultant again in a months time. Feeling very down still, the pain is still getting to me, the irony is not lost on me that the largest growth happens to be just high enough in my lung so I can feel it hurting!

On happier note I group of friends and I have been helping with a whole year of fund raising for a charity. A friend of mine, who lost his daughter 25 years ago to Sudden Infant Death Syndrome (Cot Death, SIDS) wanted to commemorate her death in a positive way, so he decided to do a sponsored walk across the Sahara, he had to raise a minimum of £2500 in sponsorship to do the walk. We decided that we would arrange a whole year's worth of events to raise as much money as possible. So whilst I have been off work I have really thrown myself into this, we had a whole day of rugby events on Sunday, the day on Sunday raised £1600, and it looks like our total is now going to make £10,000. I am so pleased that at least we have got one good thing to come out of me being stuck at home.

xxx

[nomis]

Gosh that's a tidy sum. He'll get a good start to his walk. There's no holding you down, is there jules.

[jules]

Hi everyone

Just thought I'd give you all another update, I saw my consultant last week, sadly still no progress, the growths in my lungs are still the same despite treatment. I have also managed to pick up a secondary bacterial infection in my lungs, just due to the amount of rubbish that I have got in my lungs. So I am now on very high dose antibiotics to go with the antifungals and steroids. I have started noticing alot more side effects from the steroids, I am particularly worried about my skin, steroids make your skin thinner and I am having to be extra careful of my skin at the moment. I am also bruising very easily because of the steroids, my poor hubby was mortified the other day when he was helping me to sit up during a really bad coughing fit and he left a handprint shaped bruise on both arms!

Sorry to moan on, but thanks for listening and all your messages of support.

Jules
xx

[LuckyinKentucky]

Aw cmon a little moaning is OK once in a while. I'll have to check with the judges of course but you may even be entitle to a full fledged rant.

Truly though I hope you get to feeling better.

[fatdave]

I think you have the right to moan.

Jules, I hope you get to feeling better.

[qbounce]

Jules,
I noticed your stopping in here once in awhile (like today-- ). Just wondering how your doing. Good, bad or indifferent, I'm still rooting for you!

[jules]

Thanks Qbounce, I saw my consultant last week, she has said I am unlikely to get any better clinically i.e the growths are not going to shrink and the damage to my lungs is not going to improve, however I asked whether it would be possible if I can try to get my remainiing areas of working lung working more efficiently in order to compensate for the damaged lung. She said it is possible, so just see how I go, so therefore I am trying to do this. I am working out strategies to cope with the breathlessness so that I can deal with it when it happens, for example I have now got myself a portable oxygen concentrator so I can take that out with me so if I do get breathless I can use that or my nebuliser depending on which one is suitable. I have been having alot of physio to help clear some of the rubbish in my lungs, which will hopefully will stop me getting secondary bacterial infections.

I am going into hospital for a whole day in a couple of weeks to try a new treatment which again will not help treat the underlying disease but might help clear the gunk that builds up in my lungs. This is one of the problems with having an SCI along with the ABPA, the growths in my lungs mean that any gunk can't get past them so it tends to pool, and because I can't cough particularly well this compounds the problem it is this that causes the secondary infections. The new treatment might help break up the gunk to make it easier to get rid of. The treatment is quite high risk because it might cause another bleed or I might have a reaction to it which is why I've got to stay in, but I thought it was worth a try.

I did end up having my hair cut on saturday, because as I said on another thread the treatment is making it fall out I went quite short, but am really pleased with it. I will post a photo when I get time.

Again thanks to everyone for your support I really do appreciate it.

Jules
xxx

[Travelling Blackbird]

Fingers tightly crossed, wishing you all the best with the treatment and with everything. You seem like a tough, strong person, and that'll stand you in good stead to pull through.

[greybeard]

Jules, Thinking of you.
Geoff

[qbounce]

Jules,
Thanks for the update. Hopefully the new treatment will produce something positive. Your outlook is amazing!

[jules]

Thanks for saying that Qbounce. I have to have a positive outlook it comes with the territory of being a Gloucester Rugby season ticket holder i.e this year we will win and won't fall at the the last hurdle!
Thanks again for all the support everyone
x

[alex4bs]

jules you have a reason to winge lets hope your team because of who you are can do it for you. i moan all time for nout.what a strong willed woman you must be ew have to thank simon fr sutch a wonderfull club he put together many years ago,,,alex