15 replies to this topic

[jules]

Hi Everyone

Thought it was about time I gave you all an update as to what has been going on with me and my lung disease recently. Just when I thought we had got things on to a relatively even keel a couple of months ago my blood results showed that the allergy side of the disease had flared up again, which lead to me developing an eosinophillic pneumonia (but at lease we had advanced warning with the blood results). So I had to go back on to the very high dose steroids again with all the associated risks of the growths in my lungs growing again. Sadly this did happen, I went to see my consultant last week and my most recent x-ray showed three new growths in my right lung, all of which add to the risk of me having a life threatening bleed from one of them.

I am having a CT scan next week to measure the new growths so that we can keep a more accurate measure of their rate of growth, and also how close they are to blood vessels etc.

Sorry all I seem to do recently is moan whenever I come on here, but it is starting to get me down at the moment, especially because there is no other treatment other than what we are doing at the moment, with the continual monitoring and adjustment of my medications.

Thanks for listening guys, and sorry again.

Jules

[catmint]

Hi

Thanks for the update. I had been thinking that all was well with you...'no news is good news' scenario.

Seems like you have been having a rough time. As far as I'm concerned you can come on here and have a moan any time you like...just sorry there's nothing I can do to help.

Thinking of you and sending a big hug

L

[Avocado Baby]

Jules,


I'm not surprised it's getting you down. I'm so sorry to hear about this. I'm thinking of you and can PM me anytime for a chat,

xx

[edlee]

Jules,, feel free to say whatever you need, to get it out. Sometimes just getting it on paper,, or on screen in this case, can help to lift your spirits. Heck,, that's what we're here for.
ed

[Yasko]

Thanks for the update! Wish you the best in your life! Stay strong.

[rue2you]

Sending lots of good thoughts and prayers your way!

[greybeard]

Wish you better.

[ClaraTaylor]

Hope it eases for you soon!!

[qbounce]

Jesus girl,

Stop apologising already!!!

One trait you British really need to get past.--haha

And on another note, I don't prey much, but I'll send one your way.

Now get a toad in the hole, and have at it.

[wheeliebear75]

Hope you start feeling better soon!

[greybeard]

qbounce, on Nov 11 2009, 12:12 AM, said:

Stop apologising already!!!

One trait you British really need to get past.--haha

Sorry.

[Tetracyclone]

[edlee]

Hey Q,,, what's that "toad in the hole" buisness??? And "have at" what?

Sometimes I feel so left out......
ed

[qbounce]

edlee, on Nov 11 2009, 12:38 PM, said:

Hey Q,,, what's that "toad in the hole" buisness??? And "have at" what?

Sometimes I feel so left out......
ed

Ed,
Try reading what those people eat in the, "What's for dinner?" thread. It boggles the mind.

[jules]

Just thought I'd let you know I've now got my CT results, sadly they revealed yet another problem. Apparently I have had quite a large pulmonary embolism (blood clot in my lung) I was very lucky it did not kill me at the time apparently. I did not even realise I had had one, my consultant thinks it happened a while back, we narrowed it down to a day in April when I just thought I was having a bad day!!!

The upshot is I am now on Warfarin (blood thinner) so that is also putting me at an even higher risk of a lifethreatening bleed. I know I posted this before but I really am at the end of my tether now!! I am going off on Holiday to the Caribbean this afternoon so hopefully that will make me feel better in myself if nothing else.

Thanks for all of your suport everyone I really do appreciate it.

Jules

[araitn]

Jules, sorry to hear about the new problems, as if you didn't have enough already. I hope the new treatment works for you and you can get to feeling better.

Have a great time on your holiday!