November 2015 - new diagnosis

[Middlesista]

Discovered this informative site and wonderful people when they first mentioned the diagnosis of GPA during my recent 11 day hospitalization. Came home last evening!!!

A little background - I am a 60 year old RN, working full time and living my life. I do wonder if GPA has been "smoldering" in the background because of abnormal inflammatory markers for a very long time. They did a "work-up" but found nothing and I even saw a RA and thus was years ago

About two years ago lost the hearing in my rt ear assoc with vertigo - MRI done told it was probably viral and to live my life. No other specific symptoms but as I read everyone's story I see subtle hints of GPA. Would feel hot but no temp, HR would increase and feel a little SOB and Sats would be in low 90,s but attributed that to being busy and rushing -no biggie, or so I thought


Oct of this year wicked sinus issues - ear acting up so went back to ENT. All well. Few days later developed unilateral eye pain - saw eye doc - all looked well. 3 days later vision very bad in left eye, back to optomologist - referred to neuro - optomologist. Testing done - felt might be due to sinus infection, had sinus surgery , steroids and vision back thought all was well and suppose to go back to work. When tapering off steroids for what was felt to be optic neuritis vision got bad again so they restarted prednisone and a few days later while tapering down again totally loss vision in left eye - told to head to hospital and went in the Thursday before Thanksgiving and after a lot of testing an a complication where they cut through my intercostal artery when doing the lung biopsy a sx of GPA diag was made due to Blood work and my presentation.

Had my first dose of Rituxin which they explained reasons for and 1000 mg Solumedrol X 3 doses plus one more dose due to vision getting a bit blurry again. I would be lying if I did not mention how scary this all is as you all well know - the rituxin especially scares me although I red that the side effects are most prominent after 1st dose and go,down with each subsequent dose- if I read that correctly

On 60mg Prednisone with slow taper. On bactrim and usual meds. Have home oxygen now due to lung issue but I am hopeful that will get better.

Sorry for for just a long post - I have been reading the board and am so appreciate,I've read of all your info and would love to learn more


Sorry for a my typos also.

[renidrag]

Welcome, as you know there are a lot of knowledgable people here. I can't talk to sinus issues as I presented in lungs only, so far, but others will be along soon with info and support.
Dale

[MaxD]

Middlesista,

Sorry to welcome you to our group. The loss of vision must have been very scary indeed. The lung biopsy couldn't have been pleasant, nor the complications from cutting through an artery, horrors! I'm surprised that with your symptoms blood tests (ANCA) and a chest CT scan were insufficient for diagnosis - perhaps you were ANCA negative? A biopsy was considered definitive until a few years back, but many GPA experts do not consider it necessary nowadays if symptoms, blood tests and scans provide enough evidence. Good that your docs caught it before it affected other organs.

Anyhow, it's good that you have started Rituxan therapy. Many of us on the board have gone through it with no noticeable side effects. All the warnings are so scary, aren't they? But all serious adverse reactions show up as the first dose is being administered (not afterwards), so you should feel confident about the next 3 rounds. After my first 4 rounds of Rituxan, I tapered off the prednisone after 9 months. I get one infusion of Rituxan for maintenance therapy - had one about 10 months after the first round. That was last March, and I'll probably have another within the next few months. Some docs give one dose every 6 months. My docs monitor my peripheral B-cell count (using flow cytometry tests) and give me a dose when it increases above 0.

Know that you will recover, but give your body time to recover from the disease and then the prednisone. Stay in touch, and feel free to vent and ask any questions.

[Pete]

Hi Middleista,

Welcome to the club. Sounds like you're getting competent care. Many GPA/wegs patients get rituximab to induce remission. The high dose steroid and bactrim are also normal protocols.

I had some sinus involvement at onset. It's pretty much healed over the past several years. I take loratidiene 10 mg daily and Phenylephrine 20 mg daily to keep the nasal tissues calm. I also rinse my sinuses with saline as needed. Others with more extensive sinus involvement rinse more frequently. There are additional threads here regarding sinus rinsing. You should also discuss rinsing and OTC meds with your doc.

Where do you get treated for wegs?

Keep us posted! Good luck.

[Birdie]

Sorry for for just a long post
Sorry for a my typos also.

Welcome aboard and hang on for the Wacky Weg ride.

We need a new rule, no appolojizing for long posts or tiepose. Long posts are a good thing... espeecially for introductions.

Many of us have a very similar story so you're in good company with plenty of experience to call on for answers. For instance, I had eye issues but just blurred and pain before diagnosis. I went blind many times AFTER diagnosis but it was prednisone induced. So you have that to watch out for.

Did your vision return after starting treatment? Mine went back to normal for a while, until 80mg of pred started causing problems. My eyes are a bit screwy now but I get by with glasses. There would likely have been less damage if the source (prednisone) had been caught sooner.

Soooo... let us all know how it goes, daily if you wish. There are them of us with nothing better to do and I learn something from most every post I read.

[Middlesista]

Max - thank u for your response and Info on rituxin - both of my ANCA's if I am understanding this correctly were strongly positive.

I know now I am getting ahead of myself here but r folks usually able to go back to work?

interestibg what u wrote about biopsy - thought it was mammoth in making diagnosis

thanks again

[Middlesista]

Thanks Dale - I see where r in the same part of the country. You r correct - so much knowledge and support here

[Middlesista]

Hi Pete - my sinuses were ok - it was mostly the eye and then they saw the lesions in my lungs. They tell me my kidneys r in pretty good shape - just getting out of hospital yesterday and being overwhelmed withappointments and what not I still have to gather info. I am hoping once the hemothorax is better I will be feeling and doing better breathing wise and will not be hooked up to oxygen At a teaching hospital outside of Boston and the RA has other WEG patients. Interestingly it was the neuro-optomologist that was paramount n helping figure this out and I am so grateful to her

thank you for all you help and support

[Middlesista]

Thanks Birdie! Wackey Weg ride for sure.
Z
After Sinus surgery and medrol pack vision came back - when off medrol vision got blurry again and in course of titration off a second prednisone taper almost totally loss vision in one eye. That is when they brought me back n hospital and the journey began. Vision back now and that is the main reason they wanted to start rituxin sooner rather than later to prevent complications and hopefully get me on the right tract.

Was as the prednisone taper cause your vision issue or the prednisone in general?

[Pete]

I know now I am getting ahead of myself here but r folks usually able to go back towork?

The short answer is "probably". There is a weggie who has both climbed Mt Everest and run the Iditarod a couple of times. Being in health care with a compromised immune system is something to discuss with your doc.

I retired 9 months before disease onset. It was probably 4-6 months after dx that I felt well enough to even think about resuming normal activities -- and I eased into them slowly. I now walk 2-3 miles several times a week and do some light resistance weight training once or twice a week.

Good luck!!

[annekat]

Hi, Middlesista, and welcome to the forum. Don't know what I can add to what has been said. Since you are in the Boston area, you are probably in good hands. One of the best things about this forum is not feeling alone with our disease. It would be so much scarier otherwise. Following the forum every day since late March 2011, when WG was first suggested, has saved my sanity and peace of mind. The people on here are of the highest caliber and have been through many different variations of WG, with a common thread running through. We love long posts, questions, rants, whining, the whole works, and almost everyone, while starting out knowing nothing, will be able to help someone else eventually. This forum is a beautiful place to be, if one must have such a crummy disease. All the best to you, and please stay with us and let us know how things go.

[Middlesista]

Pete , you are correct, Being a nurse does give me pause due to what we are exposed to every day. one doc did not think it was insurmountable - but I am not to sure how realistic it is.

Just so many unknowns.....

[Middlesista]

annekat - thank you for taking the time to post - I have been reading many of your posts and appreciate learn g from your knowledge.

[MaxD]

Max - thank u for your response and Info on rituxin - both of my ANCA's if I am understanding this correctly were strongly positive.

I know now I am getting ahead of myself here but r folks usually able to go back to work?

interestibg what u wrote about biopsy - thought it was mammoth in making diagnosis

thanks again

Yes, given that you were diagnosed in time you will be able to get back to work once you recover after hospitalization. In fact, the prednisone may make you feel like wonder woman, with extra energy. But as you taper down, you will feel more easily fatigued and more achy. The best advice I got (which I should have followed more closely) was to get some regular exercise - i.e. walking a mile or two daily while on prednisone. As an RN you're probably on your feet a lot and get more than enough exercise - so be sure to make time to rest your feet every so often! It took me 6 months after stopping prednisone to get my energy levels back up to normal.

Yes, you're right that biopsies used to be considered necessary for diagnosis - but not any more, not by GPA specialists. I remember when my rheumatologist diagnosed me but the pulmonologist and another doc kept insisting that that wasn't possible without a biopsy. The pulmonologist was repeating what she had learnt in one lecture in medical school. Nowadays, GPA specialists don't consider biopsies essential if other factors are strong indicators.

By the way, if you haven't come across it already, the Vasculitis Foundation (http://www.vasculitisfoundation.org) web site has a wealth of information, including specialists etc. If you're close to Boston, you couldn't ask for a better place to be! But as everyone on this forum recommends - if your doc is not a GPA/Vasculitis specialist, make an appointment to see one and they can coordinate care with your docs. You're clearly in good hands, but maintenance therapy is an art, constantly changing with new meds and ongoing trials, and if you can get an expert involved, that will be reassuring.

[annekat]

Great post, Max. Re biopsies: a lot of us got them even though our docs were pretty sure we had WG. When I was dx'ed in 2011, it was long enough ago that docs were still saying that a biopsy was essential for dx. In my case, my C-ANCA reading was very low. But my saddle nose developed right around that time, and since I wasn't a cocaine user or a syphilitic, and combined with my lung CT-scan results, it was pretty darn obvious! Still, I felt comforted to go into my ENT's office and show him the nose and a lump on my parotid gland. He biopsied both of those on the spot, there was no cancer in the gland, and the nasal biopsy was conclusive for WG. Nasal biopsies are notoriously not as reliable in that as a lung biopsy, but easier to do and go through, so I was lucky in that respect. It was nice to have official recognition of what was already pretty much accepted to be true. All that said, I think it is fine that docs are less insistent on biopsies and feeling more confident in diagnosing without them, if all other indications point to that.

[Birdie]

Was as the prednisone taper cause your vision issue or the prednisone in general?

Not taper related, pure pred, took a couple months. It was 80 mg for about ten months then months of up and down trying to get to a low dose. A couple months of that combined with cytoxin had me as desperate as before diagnosis.

So I suggest keeping a close eye on your vision (pun intentional). High dose pred can cause pressure on your eyes. Any sign of blurred vision or eye pain needs immediate, YES IMMEDIATE attention by a good eye specialist. My first eye doc started off jolly and relaxed. Her hands were shaking and she was yelling out the door to her staff after checking the pressure on my eyes. She had the girls up front making calls to other doctors/eye specialists until she found one who would see me immediately.

I went away from the second office/doctor with 8 or 10 different drops, about twenty pages of instructions, immediate appointment any time I walked in the door and last but not least, the doctors personal cell number. So, since you've already had eye issues... IMMEDIATELY... when you have a problem. Eye pressure that high and I heard the phrase "pop like a grape". No fixing that eye problem.

[debra]

Hi,just wanted to welcome u! I'm also from Boston originally,now living in nashua nh. I think Dale mentioned you're from Boston,sorry if I'm mistaken. Guess I should check facts first! I thought I did? Deb. feeling a little foolish....

[Middlesista]

Reading your info the RA maybe should have skipped the needle biopsy and then maybe I would not have had a hemothorax to deal with. I never had so many doctors looking at me but like u have all mentioned it was like I was a puzzle to be figured out. A few of the docs have treatedGPA but I am not sure if they are considered experts. I am suppose to have my second Rituxin treatment n Friday ( mentioning my fear in another thread which you helped calm me Max) I will ask if they consult with other experts.

Have to check out the Vasculitis Foundation - I did look through briefly but not as well as I should.

Thanks again Max

[Middlesista]

One of the RA docs did mention that nasal biopsy was not reliable and in fact mine was not positive after the sinus surgery from what I understood which is why he felt he needed the needle biopsy although my neuro-optomologist wants them to run it again

They moved ahead with the diagnosis due to other symptoms as you mention annekat - " if all other indications point to that ."

[Middlesista]

Geez Birdie - "pop like a grape" - not what anyone wants to hear about their eye!

i appreciate your insight and experience. Boy u have to stay informed and on top of this thing. I just get the feeling that when non GPA folks learn about it - it is more like sure glad it isn't me as they look at you sadly. I keep having to tell my family that there are treatments and we will get past this and move on.

[Middlesista]

Thank you Debra - I do live north of Boston and have family in New Hampshire.

Nothing to to feel foolish about at all - so many facts around here can be hard to keep things straight....

[debra]

Middlesista,hi! Deb again I also have all the eye problems,in fact my right eye protrudes forward now,Birdie is this what u ment? But its only because I have well let's just say past MORONS not treating me!!! You're eyes will be fine with treatment,I'm sure... Be thankful u have doctors taking u serious, I'm coming up to four years may untreated and active Wg! Guessing five in all... I pray for all us here.... Deb. Who wishes the weg dog would take a hike!

[debra]

Middlesista,hi! It's a small world. I won't ask on this thread,as I don't want to invade you're privacy.... Deb. Dreaming of bora bora again, and noticing not one member on here from there....

[Birdie]

Geez Birdie - "pop like a grape" - not what anyone wants to hear about their eye!

It's a very scary thing but also a very survivable thing. You just have to be vigilant, don't ignore symptoms, educate yourself and constantly be on the look out. Once it's controlled you can't become complacent.

[Middlesista]

Birdie. - love the positive vibe.

Just got a look through a bunch of my diagnostic testing. No outward lung symptoms yet CT scan had those cavitary nodules that got me into trouble when they did the biopsy (as I have mentioned a million times) - I ask myself how can I have those nodules sitting in my lung yet be with no symptoms of lung disease and how long did I have the fool things?

Been working hard using Incentive Spirometry to try and wean myself from oxygen - levels drop and HR goes up so have to be careful. Think I will feel so much better when this hemothorax and pleural effusion is healed

[Birdie]

Birdie. - love the positive vibe.

What else ya gonna do? Worry don't help, it actually hurts, puts yer thinkin in dissaray. And since Wegener's is controllable MOST of the time then people just need to LEARN as much as possible to make the best possible decisions, daily, hourly, in every facet of life... it's true I tell ya!


I ask myself how can I have those nodules sitting in my lung yet be with no symptoms of lung disease and how long did I have the fool things?

When diagnosed I had lung golf balls and didn't have a clue. They were granuloma and developed in less than six months. Mostly gone three months after treatment, all gone, bye bye... in six or eight months.

Here's a picture of a friend of mine.

2273

If you don't have one then get a good one. My first two, under $40.00 each, didn't last long.

[Pugdog]

Max - thank u for your response and Info on rituxin - both of my ANCA's if I am understanding this correctly were strongly positive.

I know now I am getting ahead of myself here but r folks usually able to go back to work?

interestibg what u wrote about biopsy - thought it was mammoth in making diagnosis

thanks again

i worked for 17 yrs with WG and kidney tx. I recently "retired" after successful 2nd transplant. By the way, hearing loss in my right ear was the first symptom I remember noticing. I had lung biopsy in 94 I still remember the pain from that. Get your WG under control and stable before working.

[mishb]

Hi Middlesista and welcome, I love the name. I am also one :biggrin1:

As you have already found out, the people on here are awesome, they can tell you anything that you want to know.

So glad that you have found us, and sorry I'm late in catching up, I have different sleeping and waking times that you guys :tongue1:


Take care and .......

[Middlesista]

Birdie - so glad that your "golf Balls" are gone - and no symptoms either from them

i do have a pulse oximetry that I keep handy to try and keep my numbers up. Where u on oxygen during the process at all?

[Middlesista]

Max - I had hearing loss two years ago but the pieces were not connected at the time and now as I read about GPA and I know my inflammatory markers have been elevated for years it starts to come together

i guess i am I am not sure if the SOB that I am dealing with now is from GPA or the lung biopsy problem. My breathing was fine before I ended up with the hemothorax so I tend to lean toward that but who knows

[Birdie]

Where u on oxygen during the process at all?

Only on oxygen while in the hospital, which was often in the beginning. I've been to the ER twice in the last two years and not admitted either time. A couple years before that, first two years with this, I was constantly in the hospital.

So be optimistic, unless Weg damage is bad enough to need organ transplants, it works itself out just fine in a fairly short time. And hey, we often hear from people doing well 10 or 20 years after transplants too.

[MaxD]

Max - I had hearing loss two years ago but the pieces were not connected at the time and now as I read about GPA and I know my inflammatory markers have been elevated for years it starts to come together

i guess i am I am not sure if the SOB that I am dealing with now is from GPA or the lung biopsy problem. My breathing was fine before I ended up with the hemothorax so I tend to lean toward that but who knows

I'm certainly not qualified to have an opinion on your SOB. I had lung nodules that I was totally unaware of which showed up in the CT scan (they all dissolved as did the granulomas on my elbows - very common for desk workers - and fingers which developed when I obstinately insisted on using the wrong knife on something, all gone within 3-4 months after Rituxan treatment). I also recall having SOB and a heavy feeling in the chest after starting prednisone - but that was taken care of with protonics (it turned out to be heart burn from prednisone). But your symptoms seem stronger and might well have to do with complications from the lung biopsy. If your symptoms began well after starting prednisone, it's probably not from the GPA.

Yep, it sure sounds like the hearing loss and inflammatory markers could have been early indicators. GPA has been hard to diagnose, no one thinks of it until multiple symptoms appear. It doesn't help that most doctors aren't trained to suspect it and don't have the confidence to diagnose it. I remember my periodontist remarking it couldn't be GPA, must be Lyme disease - as if he would know! Hopefully some day there will be an easier, definitive test.

[Middlesista]

Hoping this O2 and breathing is related to the complication from the biopsy - no resp issues that I was aware of prior to that CT scan.

you r right Birdie - have to grasp that positive vibe.

[renidrag]

I would have to agree the O2 is related to the biopsy mistake. Hopefully it will get better and the need for it will be gone.
Dale

[Middlesista]

Thanks Max - I tell myself it is what it is, have to deal, get better and resume my life as I can.

Glad to hear your lungs cleared - and your elbows. Have second rituxin treatment tomorrow and see my Rheumatlogist on Monday. I do want to ask her if they do consult with other specialists and from what I have read it sounds like my treatment plan is a usual one. The loss of vision three times ver the course of a month is what she told me made it important to start treatment with Rituxin

I wonder if if any one else has had a presenting symptom of unilateral vision loss? perhaps I could ask that in a new thread? I might search for it first - don't want to be oh so repiitive

[Middlesista]

Thanks Dale!

[Birdie]

I remember my periodontist remarking it couldn't be GPA, must be Lyme disease - as if he would know!

Max, you should have had my periodontist. I wouldn't be here now it not for him pulling Wegener's out of his, uhm, armpit. The Smithsonian needs to display one of the tooth brushes with his name on it.

[Birdie]

you r right Birdie - have to grasp that positive vibe.

2274
Woodstock Rulz.

[Middlesista]

Thanks Dale - I keep,doing my Incentive Spirometer and dragging oxygen tubing around the house Today I had my second rituxin treatment and I brought not one, not two - but three oxygen tanks along for just in case. Not to mention a pulse oximetry that I had tucked in my pocket book. I was trying to be discreet as I checked my numbers - case folks thought I was truly losing it...

[Realpro325]

Middlesista,
Your symptoms of presentation are very similar to mine except for the lung issue that I have not experienced. My eye DR was on the ball and knew it was autoimmune Uveiitis and saved my left eye . I too have a rare constant vertigo and loss of hearing in my left ear instead of the right ear like yours. I have the severe sinus issues but no surgery yet due to the fact that I am not in remission yet and still need to try and take chemo drugs. I also have the severe leg and feet swelling. My swelling was diagnosed as edema which is trapped fluid from steroid(prednisone, methylprednisolone) use.Hang in there and I hope you feel better .By the way what is a Middlesista?
Best regards,
Realpro 325
(James)

[Middlesista]

Pugdog - I know everyone is different and I know I have to be patient but can not help but wonder how long after rituxin work is feasible. Lots on my mind r/t work related benefits which are necessary for me. A few years away from 65 at this point and was planning on working past that age - so much for plans

[Middlesista]

James - it was the eye doc that raised the red flag for me also but rather than uvelitis they explained it was optic nerve inflammation. when you lost your hearing what did they attribute that to?

How did they treat you and are you still on hi dose steroids? The edema associated with the steroids - did they put you on a diuretic to get rid of excess fluid?

Middlesista - I am a sister in the middle.

thanks again James.

[Middlesista]

Bit of an update - went to see RA yesterday and due to the problem in my lung due to needle biopsy he felt I needed to be admitted. Might need a chest tube as more blood is noted in lung

they also saw on the CT scan that it looked like nodules in lung were shrinking- so that is a positive

[MaxD]

Middlesista,

Good luck ... wish you a quick recovery in the hospital. Good news about the granulomas shrinking!

[renidrag]

Nothing better than a shrinking granuloma. How many people can say that. Hope you feel better. What Hospital are you in. Does Doc have a lot of experience in WG?
Dale

[Birdie]

Might need a chest tube as more blood is noted in lung

looked like nodules in lung were shrinking- so that is a positive

Hey, both are a positive. Nodules shrinking is more obviously a good thing, but finding and treating any issue is positive when done soon. So go to the hospital already. Demand it immediately anytime a doctor suggests hospitalization might be a good idea.

[debra]

Middlesista,best to u! Deb.

[Middlesista]

Thanks Max. Chest tube in - doc was great. So far has drained 1000ml (1 liter) of blood I will get pass this. Thank you so much for words of support and encouragement. Much appreciated

[Middlesista]

Doc has other GPA pts and assured me he does consult with other docs. Thanks for your support.

[Middlesista]

Birdie- My RA admitted me directly from his office to hospital - would not even think of me not checking in and finding out about why I was still so short of breath. Well know we know and I just have to get better and healed and hope there is no infection so I can continue with rituxin

you are right 2 positives - fixing the lung issue will be huge

[Middlesista]

Thanks Debra and you do the best you can to take care of you.

[debra]

Middlesista,thank u... U take care of u! U have a great outlook,so that's cool. U will be fine! Deb.

[Birdie]

My RA admitted me directly from his office to hospital

Yippeeee.... You just get worse sitting at home. That's something some people have a hard time admitting to themselves (no names Deb).

[Middlesista]

That is what was happening - not really getting better at home. Thanks Birdie!

[debra]

Birdie! Ha ha..... So funny. Middlesista I hope you're doing better! Deb.

[Middlesista]

Thanks Deb- I do hope there is follow-ups and a plan. So hard sometimes to advocate for yourself, like we don't want to bother others

Birdie and folks here are so correct when they explain how important it is to be the squeaky wheel.

[debra]

Middlesista,hi! I hear ya! Very hard to ask for help,and definitely I need to be more proactive... I Realy hope you're feeling better? I know you're in good hands..... Deb.

[Middlesista]

Heading home from hospital today! Have a lot more healing to do and still have to get my lungs working as they should!!!!

[Birdie]

Heading home from hospital today! Have a lot more healing to do and still have to get my lungs working as they should!!!!

Four days is enough time to do good stuff, and get tired of hospital food.

So did they fix you or are they sending you back home still broken?

Maybe a bit better with different treatment and follow up?

Sheesh Sis, make me guess...

[debra]

Good for u,sista in the middle! So happy for u! Take it slow..... Deb.

[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.