lung issues

[vdub]

I had mentioned this issue in another post with the steroid-induced hyperglycemia, but figured it deserved its own thread in case anyone is searching for a similar situation.

I had more tests today and another appt with a pulmonologist. He showed us pictures of my collapsed lung. Its really not collapsed, but is actually an elevated diaphragm because of an unknown issue with the diaphragm. I believe technically it is called an elevated hemidiaphragm. The docs have ruled out a paralyzed diaphragm and an enlarged liver (liver is normal).

Its amazing I can breathe at all – the right lung is 50% gone, but that’s not the worst of it. They also found a granuloma in front of my trechea. Not only is that restricting me from breathing, but it acts as a restriction that causes the air from one lung to simply go to the other lung when I do breathe, so I’m not getting much exchange of air. The granuloma measures about 1.7cm x 2.2cm (golfball?). I keep thinking maybe they are mistaken and all they’re seeing is an air pocket left over from when I had my thyroid removed, but that’s probably more denial than anything. There are likely more granulomas lurking around, so they were recommending surgery vice some sort of non-invasive removal so they could look around a bit.

Anyway, the docs put me on 40mg pred and gave me enough to get home. That’s the same thing the Las Cruces hospital did 5 and half years ago. We’ll be home in about a week unless the pred does the same thing it did the last time I was on those heavy doses. At that time, I drove 700 miles a day and still had energy left. Anyway, we’ll be home whenever (pending weather) and then on to surgery of some kind.


This is the right vs left lung. You can see how the right is elevated. The white spots in the lungs are mostly end-points for airways, but some are granulomas from wegs damage.
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And this is the granuloma causing one of the restriction problem, but there are other issues, too. For instance, they still don’t know why the right lung is elevated.
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[mishb]

I'm sure none of this is allowed vdub.

The rotten WG dog is such a mongrel and should never be allowed to attack so many areas at once :predrage:

Those pictures are so impressive but they are not bearing news that you or any of us would want to hear.

Much love to you and wishing you safe travels back home.
I know once you are there you will start to feel much better, as you have done many times before.

Take care

[woz]

Just had my lungs xrayed, and have a lung function test next week, the xrays look good, compared with the one taken over 2 years ago, I will see the specialist next week after lung function test, all the best vdub, hope you dont get a speeding ticket with all the pred in your system.

Regards Woz...

[Pete]

Safe travels, successful treatment, and speedy recovery, my friend!

[vdub]

Thanks, guys! I'll keep you posted.... no worries...

[Birdie]

This is the right vs left lung. You can see how the right is elevated. The white spots in the lungs are mostly end-points for airways, but some are granulomas from wegs damage.

Take it easy driving vdub.

Andrew, I'm still waiting for a "Damn that sucks" button.

[Alysia]

oh, no. I am sorry vdub. its too much... I think that pred is not enough to take those granulomas away. will you get something more to beat them ? how much are your sats ? are you on exygen ?
sending my prayers and love. hang in there.

[Debbie C]

My gosh vdub you just can not get a break from this crap. That is some pic of your lungs. Do you think rtx might reduce the size the of granuloma or is surgery the only option. And like Mike with his upcoming surgery,do you have to be off pred ???? Please have safe travels home. Keeping you and everyone here in my prayers

[drz]

Amazing pix you posted, but not a happy pix. Sorry to hear about it so best wishes for good surgery results and quick recovery. The fact that you have such an active lifestyle and can do so much with the medical issues you have constantly amazes me and makes me feel like shirker. You are an inspiration. Hope things get better soon.

[Jaha]

You sure do take a lick'n and keep on tick'n. I can't believe all the things you have had to deal with lately. We do need a that sucks button. I am glad you are headed back home and wish you all the best with getting rid of that large granuloma quickly. I think after this, maybe it's time for you to have only good come your way. Please take care of yourself.

[Birdie]

We do need a that sucks button.

Please sign the petition.

We the undersigned do formally petition the forum moderator (Andrew) for a "Damn that sucks" button, informally known as a "vdub, we really have sympathy" button or a "Hope you get well soon" button.

1) Birdie
2)
3)

[Debbie C]

You sure do take a lick'n and keep on tick'n..

She's right..we need to change your name to Timex !!

Birdie,put my name on the petition !!!

[annekat]

I'll be thinking of you, vdub. I have something in my latest chest xray, 2.5 months ago, that they are keeping an eye on. They are calling it a nodule, air-filled, not cancerous, and slow growing over the last 3 years..... but I'm expecting another xray in early Dec. and have a little trepidation because the thing has gotten pretty big, I think they said 3cm vs. 2.5cm three years ago. I know it is nothing like what is going on in your lungs, not even close! But anything in the lungs can be scary. I hope Michelle is right that you will get and feel better once you are home. She has a good sense about things like that. I know you have docs you like at home and getting what needs doing done there will be much better than doing it in less comfortable surroundings.

[Alysia]

I'll be thinking of you, vdub. I have something in my latest chest xray, 2.5 months ago, that they are keeping an eye on. They are calling it a nodule, air-filled, not cancerous, and slow growing over the last 3 years..... but I'm expecting another xray in early Dec. and have a little trepidation because the thing has gotten pretty big, I think they said 3cm vs. 2.5cm three years ago. I know it is nothing like what is going on in your lungs, not even close! But anything in the lungs can be scary. I hope Michelle is right that you will get and feel better once you are home. She has a good sense about things like that. I know you have docs you like at home and getting what needs doing done there will be much better than doing it in less comfortable surroundings.

I hope that nodule will not be there in dec.... please update us. sending my prayers and love.

[annekat]

I hope that nodule will not be there in dec.... please update us. sending my prayers and love. I think it will be there. They are are calling it benign and say it is filled with air. It has been there for 3 years and has grown slowly. They act like it is nothing harmful, like maybe a cyst, but it just needs to be watched to make sure. Could be left over from the cavitary lesions I had at dx, which have healed but are still partially there. I only talked to the nurse and will see what the doc has to say. Thanks for the prayers and love.:smile1:

[vdub]

One thing good about going back home is that I might have time to change that horrid saddle nose picture on wikipedia. I've been promising to do that for over a year now.

[renidrag]

Best to you vdub.
Dale

[whatthewhat]

Rooting for you, vdub. Rtx cleared away all but the biggest granuloma in our daughter's lungs; I hope you get effective treatment and soon. I don't know if it's etiquette -appropriate to write what I said when I saw your x-rays but it rhymes with roly fit.

[Birdie]

I hope you get effective treatment and soon. I don't know if it's etiquette -appropriate to write what I said when I saw your x-rays but it rhymes with roly fit.

Ettiquette Schmetiquette, it's appropriate. And vdub isn't just sitting around, he's still doin stuff. Keep laughing at the dead nazi doctor vdub.

[Debbie C]

Are you there now... Its funny of all the things going on with you ,you are worried about changing that pic. You are too funny !!! Are they going to give you a rtx infusion or you don't know the game plan yet ? This is probably the first time you've been home for the holidays in awhile huh?? Take care and lets us know whats happenin.

[vdub]

Well, we made it home. I can tell the lungs are getting progressively worse. Thanks for everyone's kind words. At this point I have no idea what they are going to do. My first doc appt is Wed, but, now that we are home, I'm going to try and move it up a couple days.

[Debbie C]

Glad you are home,I bet that was one of your longest rides. I am sure you will sleep good tonight in your own bed. Hoping to can see the dr sooner. Take care

[annekat]

This is not good to hear, though I'm glad you are home and that should relieve some of the stress. I do hope you can see the right doc sooner than planned.

[Pete]

Glad you're home safely. Hope you can see your doc tomorrow and get things taken care of.

[woz]

Its good to see you made it back home safely, all the best at the doctors, a quick oil change and a polish, and you will be back to new in no time.

Take care, Woz...

[mishb]

Sending big hugs and healing vibes your way.

I'm glad you made it home safely and hope you can get into the doc earlier

[Jaha]

So glad you are back home, from your adventures. I am wishing you all the best at the doctors. Keep your good humor and take care.

[vdub]

Saw my rheumy yesterday. He said my elevated lung has been that way since a 2013 ct scan, so probably isn’t an issue. He is more concerned with the “granuloma” (they call it an anterior mediastinal mass) that is on my trachea. There is no evidence it is a granuloma or even connected to wegs. But for simplicity, I call it a granuloma – sounds nicer than tumor. Whatever it is, it seems to be the issue.

It will be a month before I even get an appt with a pulmonologist and then another month to get a biopsy. I doubt I’ll have any answers before the end of Feb.

Breathing is difficult, but not life threatening at the moment. At this point I’m in not any of danger of suffocating or anything – I think that point would sneak up on me kind of slowly. So I can still drive safely and do most things I want to do, but I have to do it slowly. Even tying my shoes is hard – I have to pause between each one so I can catch my breath.


My rheumy told me to simply go to the ER if it gets bad. Its uncomfortable and I can’t do a lot of things very fast and I can’t do some things at all. No worries…. I now have time to work on the interior of the MG.

[annekat]

Thanks for the update about what is really going on. Seems like an ENT might be just as likely as a pulmy to deal with things in the trachea. I only ask because I have both kinds of docs and I'm never sure where the trachea ends and the more lung related structures begin. I had some problems in my larynx early on, which my ENT dealt with; I guess that is at the top of the trachea. A friend had her cancerous thyroid gland removed by my ENT because it is in the throat. I guess if it is causing your difficult breathing into the lungs, then yeah, it would be a pulmy who would deal with it. I just hope they can get it out of there smoothly and you will feel much better. I must say, here in Olympia, it seems much easier and faster to get an appt. with a specialist, a biopsy, an appt. for surgery, any of that... More doctors, I guess, even if none of them are WG specialists.....

[Pete]

Vdub,

Guess it's good news as far as it goes. Take it easy and enjoy the MG.

[Birdie]

But for simplicity, I call it a granuloma – sounds nicer than tumor.

I prefer the word "goiter", don't know why, I just like it. :)

[Alysia]

Hi vdub. thanks for the update. I wouldn't be waiting 2 months about that if it affects your breathing like you describe. you are a true hero but no need to suffer like that just because they dont have time. can you try to get an earlier appointment ? to call them every day and see if there is any cancellation ? are you going to get any treatment for the granuloma meantime or not until you will check all about it ? I also suggest that your pulmy will consult with dr. Specks in mayo. after seeing about 20 pulmy docs while being with my beautiful Phil in the hospital, I dont trust any of them. only dr. Specks. sorry. if you want his details I have them. please send me pm. I keep you in my thoughts and prayers. please update us.

[Debbie C]

Wow...what surprised me is that your dr. said your lungs have been like that for 2 years and nothing was said or done. What does he think is causing it,are they going to see whats up with that ??? I really wouldn't wait 2 more months to find out about your throat. Can your dr. push to get you in sooner considering the circumstances ? In the meantime take care and enjoy working on your mg.

[Jaha]

I am sorry that they would not consider an appt. sooner for you. That is a very large granuloma or mass to be waiting for some pulmys opinion on what to do for another month or so. Did your rheumy even consider maybe having you see a thoracic surgeon, just saying, that the location of the mass maybe within their range. I'm sorry about my 2 cents, I just hate that you have had so much on your plate. Please take care and enjoy working on the MG.

[mishb]

Jana, please don't be sorry about putting your opinion in - ever.
This is what makes this forum so great :biggrin1:

I'm sure vdub appreciates what everyone has to say.
I know it also educates me, so that I know what else and who else is out there, that can help

[vdub]

I've thought about an ENT, but the wheels are already spinning in one direction.

[MikeG-2012]

I've thought about an ENT, but the wheels are already spinning in one direction.

But this disease goes in several directions, so why not treatment? Hope you get answers sooner than 2 months!!

[annekat]

Here it is December 9 and we were just wondering on another thread how you are doing. I realize you probably haven't had the appt. yet with the pulmy, mentioned above. Just hoping you are not feeling too bad and getting through each day with some rewarding activities, such as working on the MG. It sure seems a lot easier to get quick appts. here in Olympia than in your tiny little corner of the state.... but then I already have ongoing relationships with my pulmy and ENT, which I guess makes a difference. We'll look forward to hearing what the pulmy has to say, and I hope you can be kept comfortable with whatever meds you are on.

[renidrag]

Was just asking about you vdub. I will calmly wait to hear about your appt. I hope you have been able to do some interior work on the MG. Take care of you.
Dale

[Jaha]

Hoping everything is going a little better and you aren't in to much pain.

[vdub]

Thanks for asking, guys! Anne must have put something in her calendar.... :-) I had an appt with my PCP this morning. It was pretty routine although she did say my right lung was definitely a lot higher and she could tell something was wrong. She also said it wasn't "asthma-like", which is kind of good news, because it seems to me that a lot lung issues get grouped into the asthma category. But, still no news on when I'll see a pulmonary doc. I guess I should probably call tomorrow and get an update.

And, yes, I am making some progress on the MG interior. It is slowly changing from black to tan. I have the cockpit trim done and have started on the seats. :-)
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[woz]

What a sweet ride vdub, at this time of the year dressed in a red suit, you would sleigh it.......

All the best.

Regards Woz...

[Middlesista]

Sorry you are going through all this. I just don't understand why some docs just sit and wait and do not immediately get the ball in motion to help. Why? Feel almost like we find we are now on a journey that cause us to be Elian's on so many others and at least at the early stage feel such a loss of control and independence

best wishes

[vdub]

What a sweet ride vdub, at this time of the year dressed in a red suit, you would sleigh it.......
Thanks very much! Would you believe that was the first car I ever bought? Then Vietnam came along in 1971 and I put it in storage.... until 2013! We live in sort of a "banana belt" and its generally warm. I"ve been thinking of putting a wreath on the front and taking it out for a spin, but its been raining.

This is a couple of months ago. You can see the unfinished black interior that I"m now changing to tan. I do love the car -- it has kept me occupied during this unwell time.

2295

[drz]

VW, you had great taste even back then. Hope things are getting better for you soon.

[Pete]

Sharp set of wheels, Vdub!!

[vdub]

I finally have an apt with a pulmonologist! And, its fairly soon -- Monday, 18thJan, so coming right up. I doubt this initial apt will come up with anything, but maybe they'll go in another direction. I can't imagine they will want more of the same tests and I think I've had just about all of them. One procedure I haven't had is an endoscopic exam for tracheal stenosis.

[debra]

Vdub, hi. Good luck. I also have one coming, shortly after you. Maybe we can both luck out! Good luck, Vdub... Debra.

[mishb]

Best of luck for Monday vdub. I hope something good comes out of this appointment and you don't get placed on the merry go round of tests again

[annekat]

That's great, vdub. I hope you don't have tracheal stenosis, but I hope they do figure out what the problems are. Good luck!

[Middlesista]

Glad to hear your appointment is Monday .... Work on getting a plan in place and move forward in a positive direction

[renidrag]

Hope things go your way Monday, we are all on your side and will be thinking of you. Best to you.
Dale

[Pete]

Hope all goes well tomorrow, Vdub!! Let us know what happens.

[Alysia]

Good luck tomorow vdub. Ask him to consult with dr. Speck at mayo if needed. I have his contact details if you want.

[vdub]

Wow, so many friends! Thanks, guys -- I appreciate the well wishes and will be certain to let you know what the outcome is. I don't actually expect much from this apt except to be scheduled for more tests. Its going to take a while.

[Debbie C]

Wow all this waiting has made your hair turn grey !!! Good luck tomorrow, will pray they find out something. Can you take a copy of your x-ray or that scan that you showed in the beginning of the thread so he can see what was up way back when ??!!! Let us know when you get home.

[Lilly]

Hi Vdub, So sorry about your lung issues. I am having problems in both areas myself. But mine are a bit different. (so far) I have had "traveling lung infections" for right at a year now. Dr. just treated with back to back antiobiotics. Nothing was working. So did bronchoscopy and found out I had MRSA. So treated that. It did help for awhile...(they always do) but my SOB and night wheezing are starting up again, and plus I have been very hoarse for the year also. Last month I broke out in a rash on my legs and ankles, looks like red dots all over, some larger than others. I assumed a flare, because that was always my MO when I was having a flare during the first 10 years of having wegs. But my new Rheumy was taking lots of precautions before he wants to diagnose a "flare". He sent me to my EENT to scope my throat because of my being hoarse all the time. EENT said "inflammation of unknown origin" So Rheumy put me on 40 prednisone, I've been on it I guess, close to a month.....Getting the MOON FACE!!! So now Rheumy ordered a CT of throat and chest. I hope to get those results today. And on top of it all, last week I got a UTI with lots of blood cells in it. I haven't had problems with my kidneys before, so I was afraid. My cultures came back with positive for UTI, and E coli. So now I'm just playing the "waiting game, as they get results of my CT scan of throat and chest. Its frustrating, so very frustrating isn't it? I hope you will get some answers soon. I feel like all of us are just waiting around, being studied by the doctors, because they really cant understand what is going on and why.....they can only treat the symptoms....and sometimes I just feel like a freak of medical nature, because doctors just do the best they can, trying not to give us too many meds, infusions, etc. Well, got a bit long with my post. I will be seeing how you are doing, and praying you will be getting better soon. Blessings,.......

[debra]

Lily, hi... I hear ya Lily... At least you're doctors believe wegeners exists! Mine say its to rare! Rare my a**!!! Lily, curious about the throat issues. Has anyone told you, you're voice is different? This is what I'm getting for the last year or so? Being told my voice is completely different. I agree it is. My doctor, regular primary, could see changes even in my throat? Tonsils ect. But, oh no, wegeners is to rare, so... Lily, good thing I've learned patience, never knew I'd need so much... Lily please post back and let us know, how its going... Nice seeing you, again... Deb.

[Middlesista]

Lily - sorry you are hitting a bump in the road but it sounds like you are doing all the right things - still stinks that this is happening to you. Once your team has all the info they need they will get you back on track.

Vdub- thinking of you

[Alysia]

Lilly and vdub, dont allow those docs to let you wait. Wait for what ? For worse ??? Just demand diagnosis (wg, we know what is the source of the inflamation) and treatment asap.
Lilly, in the years that I was smoldering before the acute onset, I was hoarse. Not any more since rtx.

[Jaha]

Vdub,
You sure have turned grey, no wonder! I am wishing you all the best, I really hope you get a good answer soon and feel better. Lily, I hope you also get to feeling better soon. Hang in there! V, I like your grey, you look distinguished!

[vdub]

Wow all this waiting has made your hair turn grey !!!

Indeed!

I have a partial answer from the pulmonologist..... Basically, I have several small issues, each of which alone, don't amount to much, but when added together, they cause the problems I'm having. I have a partially paralyzed diaphragm and an elevated right lung, the two of which are reducing my lung capacity to about 65% of normal. Then my heart is failing to fully compress on the "compression stroke" (to put it in engine terms), so I'm not using all of the oxygen that is in my blood stream. And, I have a bit of sleep apnea, so I'm getting less opportunity to get oxygen.

My O2 saturation level is usually staying at about 90%, which is the very low end of normal. If I had 88%, they would put me on oxygen all the time -- I really don't want that.

The pulmonologist is doing one more test for subglottic stenosis and we all know what that is. He said he would not recommend surgery on the trachea under any circumstances, so whether I have it or not makes no difference. I'll be going through the test mostly for curiosity.

My only option at this point is to make my remaining oxygen capabilities more efficient by simply exercising. He said I won't be able to start out very strong and it will take 6 months to notice a difference. It will never be normal and little can be done about it. Such is life.....

[debra]

Vdub, hi... I feel for you, having these problems... Vdub, my question is, since you will not be doing anything on the subglotic stenosis, is it worth stessing the body for? Curious how invasive the testing is, as yes I believe I have this as well..I never looked into what's really involved with the testing, and all the info, makes my head feel like its going to explode, so don't recall exactly... Again, I hope they have a good plan, or get one for you, Vdub... Deb.

[annekat]

That sounds like a lot of answers for one doc's visit, vdub. Though there may still be more. My issues aren't as complicated as yours, but I do have decreased lung capacity from Wegs damage, and my doc has also said I could improve this with more exercise. So we should both start walking and report back! And I'm sure there are others who could join us....

[vdub]

is it worth stessing the body for?
Oh yes, I'll get it done! Or, as Rain man would say "Definitely do it, definitely!"


So we should both start walking

I used to run (jog) 6 to 8 miles a day -- I did that for about 25 years. I hate to walk, but, with my new bionic knee, there's to much impact to jog. I will probably find a good hill to climb. That ought to get my heart racing enough and I hope the lungs can keep up. I won't know until I try.

[debra]

Vdub, that's awesome, good for you... How bout speed walk? As far as the test for whatever they do for stenosis, I should find out later, so we shall see... Vdub, i wish you the best... Deb.

[annekat]

Oh yes, I'll get it done! Or, as Rain man would say "Definitely do it, definitely!"



I used to run (jog) 6 to 8 miles a day -- I did that for about 25 years. I hate to walk, but, with my new bionic knee, there's to much impact to jog. I will probably find a good hill to climb. That ought to get my heart racing enough and I hope the lungs can keep up. I won't know until I try. I should think climbing a hill would be more fun, with stopping to rest of course, than walking on flat land, for someone who hates walking. And would do as much good as jogging, without harming your knees.

[vdub]

whatever they do for stenosis
After numbing up your throat, they stick a video camera down and take pictures.

[debra]

Oh, ok, so like endoscopy? Vdub, that's what I had, that set off all this... Weird, huh? Im guessing, no scratch that, I know I already had it, just wasn't showing, except messed up stomach, fatigue, and going down to eighty nine pounds... Then routine endoscopy, and oh boy, all hell broke lose... Every symptom, had them all by the two week mark following. This is why I say stressing the body. With me, i would have more symptoms after a teeth cleaning. Thanks, Vdub, good to know... Deb

[Alysia]

Thanks for the update vdub. I am sorry for the many issues you are dealing with at once. I wonder if respiratory physiotherapy can help... and also if using CPAP at night can give you more oxygen at night... hang in there... sending prayers and love ♡♡♡

[Middlesista]

I also had a partially elevated diaphragm that was affecting resp function and ended up on home O2 for awhile. Pulm told me to,walk and deep breath. I have a treadmill so would walk on the treadmill a couple times a day, take deep breathes and use the IS from the hospital. I improved slowly and not needing home 02 but am waiting on a sleep.study after my next pulm visit next week. Things can get better!

What at do they say caused your elevated diaphragm? Are you seeing cardiology for your reduced heart contraction strength?

Alysia has a good thought about resp therapy to maximize your resp function

[Debbie C]

It will never be normal .....

Sorry to hear all that vdub..but you haven't been "normal " in a long time so you should be used to that !!! You did find out a lot though which is good. Did he say how your diaphragm got paralyzed ?? And how can your lung get elevated ?? I would really make an apt with your cadio. just to be on the safe side. You can have a treadmill stress test and get your running in at the same time ! Take care and keep us posted :)

[debra]

Deb, how'd you make out, today? Sorry, don't mean to hijack, though I'm sure Vdub will let it slide... Hope you're good, Deb.. Deb...

[renidrag]

Well vdub, answers but of course not the ones you or us wanted to hear. I did the overnight O2 test and I went as low as 70% so I really had no choice but to go on Oxygen, but only at night. I understand not wanting to, neither did I. Hopefully with exercise you can reclaim some normalcy. Did they give you any inhalers to take with you when you do go up the hill? Might be a good idea until you know where you stand. Hoping for the best for you.
Dale

[Jaha]

Vdub,
Well it seems like you have found out a whole lot more to try to digest and work on. I am sorry that you have more issues that have hit you and that are effecting your day to day life. You have such a wonderful attitude about all this and I know that you will overcome these issues, as you have all the other things that have hit you along the way. I was referred to respire therapy, but found it very hard to get there three times a week and they pretty much kicked me out. So walking might be your best option right know, if it is hard to get some where 3 times a week with a pulse ox of 90. I am wishing you all the best. Take care, we all care and want to see your improvement!

[vdub]

I don't want to whine about my problems (that's very unbecoming), but I do want to somewhat close up this thread so others might benefit from the information.

The shortness of breath issue is now back to the dx I had several months ago -- paralyzed diaphragm. I had an appt with the pulmonologist yesterday and he said the diaphragm definitely wasn't working properly and my breathing capacity was reduced by about 50%. The cause of this is usually due to damage to the nerve that controls breathing. The nerve runs down the right side of your neck. The damage could be from anything, but most often from some sort of accident. Wegener's isn't ruled out as the culprit, but it can't be shown as the cause either.

The "cure" for the condition is a surgical procedure where they pull the diaphragm down and tie in place. That doesn't totally cure the problem, but it does open up the right lung to allow an exchange of air. At least, that is kind of what I gather is going to happen.

I'm going to take a break from all of this stuff for a while, so there won't be anything new on the lung issue for a couple months -- maybe longer. Eventually, I hope to share the results of the surgery here on the forum. Below, is what I've able to research thus far.

This was sent to me by a friend of mine…. The problem is called diaphragmatic paralysis.
Medscape: Medscape Access (http://emedicine.medscape.com/article/298200-treatment)

So here’s the treatment. Not so bad. (the choice of music is bad)
https://www.youtube.com/watch?v=Y6oyRkNAJ1A

The actual procedure…. Doesn't look bad at all....
https://www.youtube.com/watch?v=o2p1OU845G4

[Pete]

Hope all goes well, my friend!! Check in when you can...

[debra]

Vdub, best of luck with everything... I've been praying for you too... Man, its one very long list... Debra...

[Debbie C]

Good luck vdub. I will be praying that the operation is successful and you will be well enough to take your car for a long ride come spring and Take care and post when you are able. Oh and you can whine anytime....

The webinar from VF was today about the lungs and I forgot and missed it :(

[annekat]

Thanks for the explanation, and the links I haven't looked at yet, but will. I'm glad you know when to take a step back away from explaining all this to everyone and get into your own personal system for dealing with it on your own. You sound fairly optimistic, and I hope things well go as well as possible. We will look forward to hearing about it when you are ready to tell about it.

[woz]

All the best vdub, when the going gets tough. the tough get going, looking forward to hearing about the new and improved vdub, and seeing a pic of you in the red rocket, take care and stay strong.

Regards Woz....

[mishb]

Best of health to you vdub.
We will all be thinking of you and will be sending great healing vibes, when you need them :hug2:

[Jaha]

I am wishing you all the best vdub, stay strong and take good care of yourself. We will all be looking forward to your speedy recovery and hearing from you soon.

[Geoff]

Good luck Mate, wishing you all the very best with your forthcoming surgery.

Post or whine whever you need to, we all need to get it out there one way or another, :thumbup:

[vdub]

Alysia, how does this issue track with what Phil had? Is there any similarity or is it totally different?

[Alysia]

Alysia, how does this issue track with what Phil had? Is there any similarity or is it totally different?

Hi vdub.
So, as far as my poor medical understanding is: Phil didnt have paralyzed diaphragm. He had, among other issues, pneumothorax which sounds like "the opposite". If I understand correctly, your lung extanded beyond where it should be. Phil's lung collapsed inside. The thorachic team did consider a surgery to "strech" it back up but Phil was too sick in all ways to be able to survive a surgery. This is what they said and he also felt so.
He also had sats around 90 then down to 80 and he had to increase the oxygen all the time. His lungs were very damaged not only because of wg but also because of the m. Abscessus that he had in 2010.
They insert many chest tubes to try to inflate the lung back up. But it was possible only half of the way up. They said that a hole in the lungs caused it and we waited to the hole to be healed. In vain.

My beautiful Phil also had bronchial stenosis. He explained to me that the laser and the cutting, if done, might lead to more and more damaged tissues in the area then to more cutting and make it smaller and smaller leading to an end. This is why he went for dillations.
BUT the problem was that in 4 out of 5 dillations he got severe lung infections and as a result the infections continued to create more and more damage to his lungs.
Eventhough we talked here in the forum about taking antibiotic few days before the dillation, and his wg doc also reccommanded it, his previous pulmy refused and Phil ended his last dillation with crazy lung infection on Dec 2013. After that he wrote a letter (I will post it on his thread) to the new pulmy who decided that Phil will not do anymore dillations.
Phil tought that after all the dillations caused just more damage to his poor lungs.

But you have subglottic stenosis. I posted on Victor's thread about tracheal stenosis, some info about a surgery that Gwen did. Maybe it might be relevant for you ?

My advices from my sweetie's experience:
ask about starting antibiotics few days before.
Dont allow them to use Fentanyl or hydro morphin as pain killers. They supprese the breathing. This is what killed Phil eventually.
Will they insert a chest tube to drain the fluids ? If so make sure that they will do it in a CT room and think in advance according to what they see, where is the best location for it. Make sure it will not get stucked by mucous etc. Causing it to stop working.

I will try to post a picture of the xray of my sweetie's lungs.

[Alysia]

2377

If you look at the left side up you can see one chest tube and also a bit above is the void where the lung had collapsed. There is also another chest tube more down which, as you can see, collapsed and didnt do what it should. Although its more painful it is better to have a bit wider tube.
I think someone who understand xray could tell that his lungs were in a bad shape. Cavitating nodulles and damaged tissues.

[vdub]

What a well thought out reply and explanation of Phil's situation! :-) That's exactly what I was looking for. Thank you very much! Yes, Phil's issue was quite different from what I have. Nevertheless, I think I can learn from it. Thanks, vw

[Debbie C]

Vdub,do you know when they plan on the surgery ?
Alysia,that was a very good explanation, your English has really improved since you first started here !

[Psyborg]

VDub,

I'm just not active on here as much as I used to be so just seeing this. I hope everything goes well to you and sorry you are going through more issues.

[vdub]

I just got back from 3 doc apts in the city. Lung capacity is down to 46% -- SO2 is staying at about 90%. A diaphragmatic placation (tie it tight as a drum head) is being scheduled – not asap, but “sooner than later” (probably early June). Five days in hospital and a month of recuperation. Results should give me about 70% to 80% of lung capacity. I won't be running any marathons like I used to, but at least I won't be gasping for air all the time.

This will be a full cut-open type surgery vice the robotic stuff, so it’s a lot more dangerous and painful. What’s left of my right lung is squeezed in under my right breast and my liver is occupying the space my lung should be in – it looks pretty cool on the xray. The consensus of the docs is that the phrenic nerve damage (the nerve that controls diaphragm movement) was caused by Wegener’s. Wegs is certainly the gift that keeps giving.

[Pete]

I guess this means that in addition to adjusting your diaphragm, they're going to reposition your liver and lung? Hope the surgery goes well and you can run a 5k by year end.

[annekat]

Wegener's is never-ending in its quest for unusual ways to wreak havoc on our bodies, it seems. I'm sorry for the stress of a more dangerous and painful surgery than some, but hopeful that it will make a big difference in your quality of life. No need to be running marathons at our age, anyway. That was a great accomplishment for you at the time, but there are other things you can still do... working on cars, RVing, trips to Europe, and better breathing will make them a lot more enjoyable. Best of luck.

[vdub]

....they're going to reposition your liver and lung?
That's my understanding. Should give me a bigger pred gut than I have right now, eh?


No need to be running marathons at our age, anyway.
That's totally right, Ann.... Not being able to run a marathon is the least of my worries. I need to be spending all that money I saved over my lifetime. :-)

[MikeG-2012]

Further proof that there is no ONE BOOK that is about this disease. We all write our own book as we go along.

Wishing you immensely good luck and big breaths VDub!!

[Alysia]

I love your fighting spirit vdub.
Will you have to be on/off pred/ antibiotics/any special med - before/ during/ after the surgery ?
Keeping you in my daily prayers.

[Jaha]

I am so sorry that you once more have to go thru such a serious surgery. I am wishing you all the best for getting a great outcome from this very complicated surgery. Wegener's is the disease that just keeps on giving, maybe this time around it will give you something good. Please take care of yourself and keep us up to date with your status and recovery.

[Debbie C]

How the heck did everything get so moved around !!!???? Are you on any oxygen ? So sorry you have to go through all this but hopefully you will have a quick recovery and out spending money soon ! Let us know when they have a date set for the surgery.

[marta]

Wow, vdub!

"diaphragmatic placation"

Now that's a mouth full, too bad it's not a lung-full.
The gift that keeps on giving indeed.
Good thing you're YOU, and you've got this beast figured out.
Sending you super sonic energy and healing powers! Above and beyond the pred of course.
We can share lung-hole pictures once we're done getting them fixed (I've got a 3cm jobbie in my left side - a perforating lesion this go around, along with all the other granulomas littering the breathing space... yippee Wegener's :wink1: )
First we heal, then we laugh!
Or we can laugh while we heal... it might make it a bit quicker.

[Alysia]

Do you have a date for the surgery, vdub ? How are you doing meantime ?
Keeping you in my thoughts & prayers ♡♡

[vdub]

Its right around the corner, Alysia. 7Jun -- I have to show at hospital on 6Jun, surgery is 7Jun, then 4 to 5 days in hospital followed by a month of recoup at home.

[Pete]

Hope all goes well and you recover quickly!!

[renidrag]

Will definitely be thinking of you on those days vdub. Hope all goes well also.
Dale

[vdub]

At least for a couple weeks, I'll probably be on the forum more, because I can't do anything else. I'm not sure what my restrictions are going to be yet, but I believe he said something about not lifting more than 5 lbs for a month. That's a pretty "heavy" restriction for a full month....

[annekat]

At least for a couple weeks, I'll probably be on the forum more, because I can't do anything else. I'm not sure what my restrictions are going to be yet, but I believe he said something about not lifting more than 5 lbs for a month. That's a pretty "heavy" restriction for a full month....
Me, too, will be thinking of you and wishing you the best possible recovery and outcome. (Sorry, learning my new phone, things are a little awkward..)

Hope all goes well and you recover quickly!!

[QUOTE=renidrag;107114]Will definitely be thinking of you on those days vdub. Hope all goes well also.
Dale[/QUOTE88


Sent from my MotoE2(4G-LTE) using Tapatalk

[Alysia]

I will keep you in my thoughts & prayers, vdub. My beautiful Dr. Phil will be there, near you, to make sure that everything will be perfect.

[Alysia]

I dont remember if you are a cat person, vdub, sending this to cheer you up.... all is going to be purrfect :)

2427

[drz]

At least for a couple weeks, I'll probably be on the forum more, because I can't do anything else. I'm not sure what my restrictions are going to be yet, but I believe he said something about not lifting more than 5 lbs for a month. That's a pretty "heavy" restriction for a full month....

I had a 10 pound limit after hernia surgery earlier this year. It was bit inconvenient at times but not too bad. Good luck with surgery and best wishes for quick recovery too.

[Debbie C]

Keeping you in my prayers vdub,I'm sure all will be sooo much better for you,especially the breathing. At least your honey do list will be short for awhile !!!

[vdub]

Thanks to all! Much appreciated... I'll have my laptop with me so I can keep an eye on you guys... :-)

[BrianR]

Thanks to all! Much appreciated... I'll have my laptop with me so I can keep an eye on you guys... :-)

Best of luck VDub. Something tells me you'll surprise the docs with your recovery time. Afterall, you've been practicing resilience for some time now!

Brian

[mishb]

Will be sending healing vibes your way vdub, however I know all will be well and will go just as planned.

You have all of us, behind you

[BookNut]

Healing thoughts and prayers coming your way!! Hope to hear from you soon after surgery.

[MikeG-2012]

Thanks to all! Much appreciated... I'll have my laptop with me so I can keep an eye on you guys... :-)
Here's your new Avatar then VDub:

2433

We all know you're out there watching us, making sure we behave! (-8 LOL!

[Jaha]

I am wishing you all the best on your surgery and recovery. Take real good care to do what the Docs tell you to do. Please keep us all up-to-date of your progress. You will be driving around in your car, before you know it. My thoughts and prayers are with you.

[vdub]

Thanks, Mike! That works nicely! :-)

[MikeG-2012]

Thanks, Mike! That works nicely! :-)

Glad you liked it. Trying to do something to make others smile at least once a day, and you were the one I picked the other day.

Hope you're recovering nicely.

[vdub]

The surgery is done and I'm still alive. The surgery took 4 hours and I'm now in the ICU. The nurses want me to blow on this thing that expands my lungs, so I'm trading "blows" for orange sherbert ice cream. I think that's a fair trade.

The cause of the paralyzed diaphragm is damage to the phrenic nerve on my right side. There’s no way of repairing that nerve, so the diaphragm will always be paralyzed and nothing can correct that (big bummer), so the right lung will never actually work.


The natural state of the paralyzed diaphragm is in the up position, that is, the exhaled position. If you inhale, then you are telling the diaphragm to tense up and pull down to create a cavity in your chest which the lung expands into and causes you to “take a breath”.


What the surgeon did was start grouping the diaphragm together and slowly making it tighter and tighter such that it would constantly give me an “open cavity” in my chest which the lung will expand to fill up. Unfortunately, the lung only expands once during surgery and then is left to be always expanded. The diaphragm will never move again and will never actually operate properly.


The benefit of this procedure is to take advantage of the left “good lung” and give the good lung additional “reservoir space” to put air into. As the good lung expands, some air will flow into the bad lung. In that way, I can take a larger-than-normal breath of air, but not as much as if I had two lungs working.


Prior to the surgery, my lung capacity was about 46% of normal. After the surgery, it “should” increase to about 70% of normal, but will never be totally normal. No more marathons for me. Actually, even tying shoes will still be a struggle, because as you bend over, you tend to compress the lung cavity.


I haven’t hit the wall yet as far as pain, but they tell me it is coming. Usually, you don’t get the pain surge until a couple days after the surgery when all the surgery drugs wear off. But, in this case, it’s a bit worse. The nurses have been telling me to prepare for really bad pain beyond the typical pain from when the drugs are out of your system. Eh, we’ll see. I have a pretty high threshold of pain, so I don’t think it will be all that bad – not to mention, I’ve been on a regimen of 6-8 hydrocodone or tramadol tabs per day for about 5 years. We'll see....

[Debbie C]

Sorry to hear that news vdub, Is the damage to the nerve from wg ? So they weren't able to "move" things around back to where they should be to give your lung more space ??? I'm just going by the pics.
You will have to start kneeling down instead of bending over for things (tying shoes )
I don't see how you feel any pain taking that much hydrocodone a day...1 knocks me on my arse ! I hope the pain isn't too bad for you. Do you know how long you have to stay there ? Keep us posted and enjoy the sherbert !

[Alysia]

Thanks God you are after the surgery, vdub.

You "sound" good for someone only few hours after a big surgery and still in the ICU.

I am sorry that they couldnt fix the lung all the way. To encourage you, watch this interview with Peter Marshal, telling how he climbed Mt. Ranier with only 60 percent lung functions:

Fighting Arthritis | Breakfast Television Vancouver (http://www.btvancouver.ca/videos/3601512933001/)

I hope that the pain will be bearable. Dont allow them to give you Fentanyl for pain. It suppress the breathing. Also, it is important to reduce the hydrocodone VERY GRADUALLY.

Keeping you in my thoughts & prayers. Please update us. Sending my love ♡

[NikkiNicole]

I am so happy to read that you're doing alright!!! That is an excellent trade to get the orange sherbert for blows! You work it however you want!
Keep continuing to get better and keep posting to let us know how you are doing!!!

[annekat]

I'm glad you are well enough after the surgery to write such a comprehensive and complete report. Not so happy about the final outcome for your lungs, or the coming pain during recovery. But I'm glad that you have the one good lung and that they have worked it so you'll have 70% capacity instead of 46%. You still have some quality of life ahead of you.

[Pete]

Glad to hear good news. Hope the post-op pain isn't too bad.

[mishb]

Thanks for the update vdub

I'm glad everything went well, well as well as they could get it.
I will send you so many healing thoughts and prayers that you wont know what to do with them all. Hopefully this will keep all of the pains to a minimum.

Have as much ice cream as you need and I hope you can get back on to the MTX very soon, to avoid any other issues.

Take care, and be nice to the nurses

[vdub]

Take care, and be nice to the nurses
The nurses make or break a place. That career field seems to attract the best-of-the-best.

[woz]

Its great to hear, that you are on the mend, not the best news about your lungs.
All the best, take care...

Regards Woz....

[renidrag]

Glad you are coming back vdub. Remember, slippers and loafers, forget the socks. Positive side, 36% increase in lung capacity.
Dale

[woz]

You will have to drive that red car a lot more.


Regards Woz...

[drz]

Was the nerves damage from Wegs?

I have had about 60-65% lung function after partial recovery from my initial attack of Wegs. The first year was about half of that and i used to wheeze a lot from any exertion but you should feel a lot better soon. I found some rehab help me learn to be more efficient too in my lungs and heart so I don't feel as winded as often.

[Jaha]

So glad to here you are on the upside of recovery from a very complicated surgery. I'm sorry that there was no repair for your Rt lung, but it is good to get 70% out of the Left one. I am only at 62% out of the both, with Wegs and COPD. It's ok not to run any marathons and it sounds like you will feel much better than before. I hope you don't have to go thru to much pain. Take care of yourself and thanks for letting us know about how you are doing.

[Geoff]

Wow its been almost impossible to breath myself reading your postings VW, hope the wall of pain has subsided and the path to remission opened up in front of you. You never seem to do things by halves do you!

Concentrate on taking those small steps to recovery and think about sunny days in the MG with the top down!!

[vdub]

I’m home now… Sort of home... The doctors didn’t want me to leave the local area for a few days in case anything happened, so we are in our RV (caravan), which is quite large and comfortable -- its as good as home.


The incision is from the bottom of the right shoulder blade all the way around the rib cage to the edge of the rib cage below the sternum. It’s about 8” of pain.

The incision goes between the ribs and cuts the muscle through to the chest cavity. It had to be large enough so they could get a hand completely in the chest cavity and move all my other organs out of the way and stretch the diaphragm tight, sew it in-place, and give the lung some room to expand. Every breath, every movement hurts. Laying on my back hurts, laying on my side hurts. Standing up hurts, but, sitting down also hurts. I have had oxycodone before, but never liked it – I certainly like it now! But, even it isn't taking care of all the pain. Time is what I need.

So far, the surgery hasn’t helped much – maybe a little, but not much. I don’t expect instant relief -- it will take time. I’ve had 9 major surgeries since getting Wegner’s. Six of those have been a direct result of having Wegener’s. This surgery, by far, has been the most painful, but it’s probably a toss-up between this one and the brain surgery as to which was the most dangerous.

[Pete]

Hope you continue to make good progress!!

[Jaha]

I am sorry you are going thru so much pain. I hope the pain becomes more manageable soon. My thoughts are with you, take good care of yourself.

[andrew]

Hopefully the end result makes the pain worthwhile.

Try standing on one foot, facing SSE with one arm stretched out in front of you and the other pointed directly upwards. The leg you aren't standing on should then be pointed directly behind you - kinda like a ballerina. Try it and tell me if that hurts too :)

Seriously though mate hope the pain goes away soon and you can relax and start healing properly.

[annekat]

vdub, I hate hearing you are going through such a rough time! I just hope the pain becomes noticeably less, starting soon! I'm glad you have your RV there, and your wife for company and support, but am really looking forward to hearing that you'll be going home for real! Best wishes that this ordeal will be in the past before you know it and you can get on with your life.

[mishb]

Wow, that nurse wasn't wrong when she said the pain would get worse. I'm so sorry that you are having so much pain.
I will certainly let you off the hook on being nice to nurses, she doesn't deserve your kindness for saying such things :wink1:

I hope you can find a comfortable position, that doesn't cause too much pain for you and I too hope the pain eases very quickly.

[Alysia]

I am so sorry for your pains, vdub. I hope that you are getting better each day. Just think about all your organs back in their place, how important it must be... I guess it is too early to estimate the results of your lungs functions. So we will keep on praying for the best outcomes.

When you will feel better, please post some pics of your RV, inside and outside.... sounds great to have it :)


Hang in there. Keeping you in my daily prayers, and I have a private messenger who takes them straight to heaven. So you should start feeling better very soon. Sending lots of love ♡♡♡

[drz]

Thanks for the update. Best wishes for quick recovery! Hope things feel better soon. Rest up as much as you can. I found sleep helped the time pass after surgeries.:sleep:

[renidrag]

Best to you vdub.
Dale

[Debbie C]

Vdub I am also sorry to hear about all the pain you are having, they sure opened you up so you are going to be in pain for awhile. At least you are out of the hosp and maybe able to relax a little more in the rv.:hug2:Hope you start to feel better with each day.

Andrew. I would love to see you do that...even before the beer !!! But you must do it while wearing a tutu !!!!

[andrew]

Andrew. I would love to see you do that...even before the beer !!! But you must do it while wearing a tutu !!!!

The only problem with that would be deciding which of my Tutus to wear :laugh:

[Alysia]

The only problem with that would be deciding which of my Tutus to wear :laugh:

Mmmm.... tough decision.... will you wear this one.. ?

2436

Or the black one ?

2437

Or just the sweetest ?

2438

But I am afraid that after you might look like that..

2439

With unwanted results...

2440

[Alysia]

Sorry vdub... I will putin myself..

:back on topic:

[andrew]

[QUOTE=Alysia;107293]
Or the black one ?

2437

:lol::lol::lol::lol::lol::lol::lol:

I think the black suits me best...

[vdub]

Been a few days since I've been on. I knew the pain surge would come and it did. Still alive, but not even getting on the computer....

[Alysia]

Been a few days since I've been on. I knew the pain surge would come and it did. Still alive, but not even getting on the computer....

Hang in there vdub... I hope that the pain will be gone soon... keeping you in my daily prayers ♡

[andrew]

Been a few days since I've been on. I knew the pain surge would come and it did. Still alive, but not even getting on the computer....

Ugh that's no good mate. Hoping it calms down soon!

[Psyborg]

Sorry you are having the pain VDUB. hopefully you get some relief soon.

[mishb]

I hope laughing doesn't hurt too badly vdub
'Cause I'd really love to see Andrew in the pink tutu :lol:

[vdub]

Things are slowly getting better. A lot of the swelling is down and there's less pain -- I can do a light cough now with only moderate pain. Some motions really set off a flood of pain, but you learn what those motions are really fast and avoid them. I still don't feel any improvement on my breathing, but it's only been 9 days, so no worries. I restarted my mtx today, so that should take away some of the normal wegs pain and I'm going to start tapering off the oxycodone and replacing it with hydrocodone, then, eventually, my normal tramadol, which is about the same effectiveness as the hydrocodone (50mg vs 325/7.5mg). Just this much typing causes a lot of back pain around the incision area, so more later.

[annekat]

I'm glad to hear the pain has lessened some, and it's got to get better from here on. We'll all be thinking of you.

Sent from my MotoE2(4G-LTE) using Tapatalk

[Pete]

As long as today is better than yesterday...

[drz]

Thanks for the update. Keep up the work to heal up soon.

[Jaha]

I am glad that your pain is kind of easing up some. I wonder if you could use a light wrap around that area, if that would help with the pain of movement. I know you could not put anything to tight around you, because it would not be good for breathing. I know when I had lung surgery, I used a light wrap to move around with. I know you have quite an incision and probably just the smallest of movements must hurt like hell. I hope things continue to get better for you, take good care of yourself.

[BookNut]

So glad you are not only on the mend, but feeling less pain. Keep us informed!

[Alysia]

I am glad that your pain is kind of easing up some. I wonder if you could use a light wrap around that area, if that would help with the pain of movement. I know you could not put anything to tight around you, because it would not be good for breathing. I know when I had lung surgery, I used a light wrap to move around with. I know you have quite an incision and probably just the smallest of movements must hurt like hell. I hope things continue to get better for you, take good care of yourself.

Maybe just hugging gently a soft pillow if you need to cough ?
I am glad that you are feeling better. I keep you in my daily prayers ♡

[Debbie C]

I know they always give people with heart surgery a stuffed animal to hug when they need to cough or move. Glad to here its getting better..hope the breathing is....Take care

[Geoff]

Hi VW,
Many thanks for giving us a valuable insight into your treatment and recovery. I feel your pain thru every message you type!

Its a slow process which will finally result in a lasting recovery and all of our thoughts are with you every step of the day. Can you walk at all? what can you do to get through a 'normal' day for you??

Wishing you all the very best from Linda and me.

[vdub]

Its been 2 weeks now since the surgery and I am able to get around quite well, but not for very long at a time. Another week and I think I'll be able to do most things that don't require heavy lifting. Unfortunately, the heavy lifting is exactly the stuff I need to be doing. But, I'll spend the extra time with my new granddaughter -- she's 14 weeks old now. One of the best things I've been able to get back to is short drives in the MG -- whoah!!

[MikeG-2012]

One of the best things I've been able to get back to is short drives in the MG -- whoah!!

Once again, I've come up with your new avatar! (-8

2449

[vdub]

Yeah, that ought to work! Looks like an MGB, but that's ok -- I have one of those, too. :-)

[MikeG-2012]

Is this better? LOL!
2450
Sorry, didn't have time to make it the green color of yours! (-8

[vdub]

Oh you nailed it! The A is red the GT is green. The A used to have black interior, but I have since changed it to tan. Beauty!

2451

[Mas78]

I haven't checked in on the forum for awhile, Sorry to hear that you needed this surgery done vdub. I am glad to see you are now a couple weeks past the surgery and doing good. I hope that in a few more weeks you will be getting out and about more and breathing better.

[vdub]

I had my follow-up exam from the surgery yesterday. So far, the surgery hasn't helped much, so they did an xray and thought the cavity was full of fluid, so they scheduled a centesis for today, i.e., draw fluid off. However, before preforming the procedure, they did more tests to determine how much fluid and how it might be impacting things. The conclusion was that there wasn't enough fluid to justify the risk of infection from the centesis since I am back on mtx. So, we are in a wait-and-see mode. I'm guessing my lung capacity is still at about 46%, which is where it was at before the operation. Maybe in a few months things will change. In the mean time, no worries....

[Pete]

One.day.at.a.time. Hope the improvement continues more rapidly going forward.

[annekat]

After all that, I hope you'll eventually get some improvement in lung capacity!

Sent from my MotoE2(4G-LTE) using Tapatalk

[andrew]

Damn. Still early days yet though! When's your next checkup?

[vdub]

When's your next checkup?
No new appt is scheduled at this point. I have several activities that I can test to see if there is any improvement. I had "bench marked" those activities prior to the surgery. If I detect any changes, I'll probably get another xray to see what is going on. I'm still not through all the pain issues. Its nothing like the first 2 weeks, but still a fair amount of pain to contend with.

[Alysia]

I am sorry, vdub, that your lungs are not functioning better yet. I hope it is a matter of recovery and time. I guess that the fluids also disturb so once they will gone, the lungs should be better.

Also thanks God for the other organs which were put back to place.

Hang in there. It takes more time to heal when you are a weggie. Keeping you in my prayers ♡

[drz]

Sure hope you see some improvement as you heal more. Best wishes for better health!

[Jaha]

I hope things start improving for you, as time goes by. My thoughts are with you, please take care of yourself.

[Debbie C]

I love your new avatar...now that is you !! Hope you start to improve and the fluids don't start building up.take care of yourself and keep us posted.

[vdub]

I saw my lung surgeon last weekend. His wife is my endo and we all have become personal friends. He told me that it might take some time for my lung to fully drop where I start feeling the benefit of the plication. Its been 2 and half months now and I do notice a difference -- not as much as I had hoped for, but its getting better.

A new problem has cropped up that leads me to believe that the paralyzed diaphragm was caused by something other than an injury or wegs (I don't know how wegs might have caused the issue). A couple weeks ago they did an MRI on my neck and found that my C5-C7 vertebrates showed damage from regular old osteoarthritis. I see a neurosurgeon next week (the same neurosurgeon who took out my pit 6 years ago) and he might be able to shed some light on the problem.

The damaged vertebrae are pretty painful, so I'm hoping they can give me steroid shots or something to alleviate the pain. I can't take NSAIDs due to conflicts with other drugs, otherwise, I'd probably be loading up on Ibuprofen. Hydrocodone doesn't seem to help the pain and I read a study on the internet where surgery doesn't always help for these types of conditions. We'll see....

In the meantime, I try to live life as normal as possible and try not to whine too much about the crappy lot I've drawn.... I don't have to look very far to find someone in a much worse situation than me, so I'm thankful I'm as good as I am....

[Alysia]

Thanks for the update, vdub. Thanks God that the lungs are getting better. Praying that it will continue to heal.
Sorry about the vertebrae damage. My father had similar issue not long ago. He got epidural injection to the area, which helped him with the pain.
Hydrocodone can suppress the breathing so dont be sad that its not working. Its better without it. I hope you will feel better soon. You sure had enough...
Keeping you in my daily prayers ♡♡♡

[andrew]

Well that's a bit crappy. When is the Neuro appointment? Soon I hope. BUT good that your lung is improving and that the doc says it will continue to do so. Sucks having to wait all that time though. I just hope they can deal with that vertebrae issue effectively and efficiently....and soon :) Keep on keeping on mate!

[vdub]

When is the Neuro appointment? Soon I hope.
I believe many people on the forum have said how important it is to be your own advocate and that has certainly been true with this situation. Originally, they had me plugged in to see the neuro on 29Aug, but that just wasn't going to hack it. There's no way I was going to put up with this pain for any longer than I had to, so I whined and sniveled (excellent technique, btw) and got the appt moved to 15Aug for the neuro.

Apparently, it takes a special kind of doc to inject steroids into your neck and that is yet another appt after getting a referal from the neuro. Fortunately, that doc isn't too booked up and I should have something done by 17Aug. Hopefully, a good dose of injected steroids will relieve some of the pain.

I'm really getting tired of all this. I need to get back to living life again and the living part keeps getting interrupted by medical issues, but I'm optimistic that it will all turn around in the next few months.

[mishb]

Good luck with the appointment vdub. Only a couple of more days and you will have some answers.

My husband also had an epidural injection in to his vertebrae and is doing well. This was 20 years ago.

Keep strong. I have everythng crossed for you and know that you will be back to living life again, real soon

[Jaha]

I'm sorry that you are in so much pain and hope that the injections will help you. My Mom had neck and back surgeries in the past and now has injections about every 6mos in her lower back, which helps her greatly with her pain. I hope you get back to being able to have a more pain free life soon. Take care of yourself.

[Geoff]

Well I hope you have had a sucessfull appt VW and some relief and comfort as you look towards the future. Do you think the issues with your vertebrae are related to previous surgery? Hope you get some answers soon, wishing you all the very best.

[vdub]

Do you think the issues with your vertebrae are related to previous surgery?
I think the problems stem from an injury to my neck that I sustained while surfing in Hawaii 30 years ago. Make no mistake, tho, I'm not a macho surf bum. The accident occurred on a boogie board -- it was my first and last attempt at surfing. On about the 3rd try, I hit the wave wrong and it slammed me head first into the sand. I felt a sharp pain and warm feeling all over my body. I didn't think that much of it except that I probably had a close call on breaking my neck. I can't think of any other time my neck might have been damaged.

I also think, that same incident and the resulting arthritis might have been the cause for paralyzed diaphragm since the phrenic nerve, which controls the diaphragm, exits at C3-C5. The damage to my vertebra is C4-C7. Too much coincidence to be ignored.

I will be getting a cervical epidural in a few days. <sarcasm> Looks like it might be fun! </sarcasam> :-)
Cervical Epidural Steroid Injection Video (http://www.spine-health.com/video/cervical-epidural-steroid-injection-video)

[Alysia]

Dont worry, vdub. My father had it. And he is 81yo. He felt nothing during the procedure and was only tired after. He was awake all the way.

[vdub]

Thanks, Alysia! Did he have to have the procedure over-and-over or did one time do it for him?

[Alysia]

Thanks, Alysia! Did he have to have the procedure over-and-over or did one time do it for him?

It was 3 months ago or so, and it took about 3 days untill he started to feel better. It was not all at once but very gradual. Since then he was only getting better. The dr. Explained that he might need more procedures if the pain will return but so far he is feeling much better. Only small pain from time to time. He had to rest a lot and be careful with movements. The dr. Said to be careful about moving to the sides. Not to carry heavy stuff. Working in the garden is also better to avoid according to the dr.. gentle breathing exrecises also helped him when the pain was still there.

[renidrag]

Just catching up with this thread vdub. Sorry you are going through this, getting on with life after WG is hard enough but you sure do carry a heavier load. Best to you and hope to read a positive post, post shot.
Dale

[vdub]

Thanks, Alysia -- knowing what might happen is nice. I guess that's what this forum is all about. And, thanks for the well wishes Dale! That's what this forum is all about, too.

[vdub]

We can close this thread out now as I have come to the end of the line. I had an appt with the pulmonologist today and he did some capacity tests on my lungs. Prior to the operation, my total lung capacity was 46% and they hoped to bring it up to 70% or 80% after the operation. Unfortunately, we only managed to squeak 60% total capacity out of the procedure. And, more unfortunately, that is the end of the road, nothing more can be done. But, if I can snorkel, then all is ok. I can't test my snorkeling capability for a couple months, but I think I'll be able to do it. I almost think I could go off my cpap, but haven't tried it. If I lost 10 or 20 lbs, then it would probably help things out quite a bit, so that should be my first course of action. But, as far as surgery, or exercises, or any other procedure goes, we have exhausted them all and 60% total capacity is all I'm going to get. Bummer, but no worries.... :-)

[Jaha]

I am sorry to hear that. I will be wishing you all the best to be able to snorkel and good luck with the weight loss. Take care of yourself!

[annekat]

Me, too vdub. I guess 60% is better than no improvement.You will still be able to do a lot of what you like to do, which I hope will include snorkeling. It will take some time for this to sink in, and adjusting may be easier than you think. I hope so.

Sent from my MotoE2(4G-LTE) using Tapatalk

[vdub]

I can't complain too much about 60% -- that is true!

I think I'll close the thread now. I can't believe its already up to 190 replies. Thanks to all for the well wishes....

Well, darn, I have to have Andrew close it. I guess I can close everyone's except my own..... :-)

Nevermind.... I can close it.... I was just looking in the wrong place.... Sheeezeee....