November 2015 - new diagnosis

[Middlesista]

Working on the fix Birdie! Lung is still the issue - still have to use oxygen. Going in to see pulm doc and ENT tomorrow and I hope that all goes well- like no more blood collapsing the lung and the lung re-expanded is what I would LOVE to hear. The thought of being re-admitted to hospital does not sit well wth me although I will do what I have to do. The GPA has not been the bigger issue since the lung problem has taken center stage.

4th Rituxin treatment is Friday -that is good news. Hope it works well and helps get my body back in charge in a good,positive way

Thanks Birdie - always like to read your words.

[Birdie]

Working on the fix Birdie! Lung is still the issue - still have to use oxygen. Going in to see pulm doc and ENT tomorrow and I hope that all goes well- like no more blood collapsing the lung and the lung re-expanded is what I would LOVE to hear. The thought of being re-admitted to hospital does not sit well wth me although I will do what I have to do. The GPA has not been the bigger issue since the lung problem has taken center stage.

Ya know, if you're on top of it then there is not much any of us can do to help.

Sounds like you're on top of it.... at least for middle girl nurse.

[Alysia]

Hi sis. I only now reading your thread. Sounds like you are getting the best treatment possible, in terms of all tests, specialists involved and rtx. The beginning is always scary like hell. Then you get used to the idea and also start to revover, and coming here often, all these help for sure.
How are you doing so far ? Are you still on oxygen ? How much ? How are your sats ? Did you recover from the lung issue ? What was it ?
Sending my prayers ♡♡♡

[Middlesista]

Hi Alysia - thank you for "stopping by". always like to read your posts - lots of great information and support

lung issue - in the course of the needle biopsy of the lung nodules- which I had no idea that I had since my lung function was fine - they accidently cut into an artery in my lung causing bleeding. They watched for a few days and it got no worse but I ended up going home onOxygen. Was a home about a week - still not back to baseline with breathing and went in for followup with RA and he was concerned about my breathing and re-admitted me - I had over 1000ml of blood sitting in my pleural space - it accumulated and compressed my poor lung. Had a chest tube for a few days and still I am still working to get my lung back in shape. Getting better but no where near my baseline or where I was before the artery nik

You are so correct Alysia - it is all as scary as hell - and I worry how this is affecting my family since I have always been the support and the "strong one" and I see myself feigning that I feel fine and all is well. It does get tiring to do this but I so hate to be a burden or needy. I guess I can understand how some people go off treatment I will continue to do everything I can to get better and just hope I can get better and be the person I was for my family and friends

Thank again Alysia.

[debra]

My sista in the middle, just wanted to say hello. Being the strong one of the family, just remember to close the door on everything every now and then and recharge, take time for just you.... Nothing feels worse for me, then going from independent to dependent. But at some point in life everyone will experience this.... There's nothing wrong with not being so strong all the time? Tuff one, I know.... This sickness sucks, but also teaches some amazing things about ourselves, we may have blown by...... I hope the best for you, sista... Also glad you're here, posting.... Deb.

[Middlesista]

Thanks Deb -

[debra]

Pleasure is all mine my sista!

[Alysia]

oh, Thanks God they found out what happened with your lungs. my beautiful Phil had 8 chest tubes. painful thing. I am glad you are off it. it takes time to heal I guess, but keep on listening to your body and if you are still worried, go back to the pulmy. rtx also takes time to work. for me it started to work only after 3 months (for others much faster) and only after the second round my wg became more relaxed. my lungs recovered only after 5 months but only on pred at that time, in 2008 when they didnt know what to do with me. keep updating us. thanks for your kind words.