New lung?

[Tom]

Howdy all. Been registered here for some time now but always too tired to post or doing something else but I look in quite often. I was dx with WEGENERS in early 2011 but had all the classic symptoms beginning in 2008 with sinus troubles. I delayed much of getting it cleared up. I flared in a bad way in 2011 and they found the wegs. I had a pulmo Dr who was here on a visa, had no idea she was going to leave. Anyway I met with a new pulmonary Dr a couple weeks ago and all was good. I think I have another good one. He told me that I actually looked good compared to my lungs. I asked what he meant and he said that I had COPD pretty bad. A few days later, I had my appointment with my nephro/internist. She asked how I liked my new Dr. I told her what he said about my COPD but I didnt question what he meant by the holes in my lungs and she explained it to me fortunately when they found the wegs that they were able to get it before it destroyed the kidneys but it did destroy about 20% of both kidneys but I have normal funtion so far. I then told her that I was on a confession tour and have confessed to my wife that I have been trying to fool everyone into beleiving that doing fine with my respitory. Im hard to hold down and like to stay busy. I have been in a slide for a year or so. My Dr just smiled and said we know because we could see it on your CT scans. As we talked, I asked if my previous smoking habit was the cause of my COPD or was it the wegs. She said it was more likely the wegs because of the time it did damage., the course of a month or so when I flared. That made me feel good but I will still tell anyone who asks, that smoking is the cause. Since she is the Dr that my other docs and me decided to make any med changes or decisions regarding my treatment, she asked me at that point if I had ever given thought to a lung transplant. Shocked to say the least! Ive had a lobectomy on the right lung just a couple months before Dx's. I asked if it has advanced that much and she said it had. She offered and I allowed her to talk to my Pulmo about it. I really didnt think I would qualify for a transplant but she thinks I might be a good canidate. Im not sure what the criteria is as it slightly different from lung tranplant center to another. After doing some research on transplants and what to expect, the one thing that stood out most was that I have to have an expectation of less than 2 years life expectancy, another center required, less than a year and I did see an article last night that said less than 3 years. I am stuck on the life expectancy after a transplant. I am thinking I might be getting a call from the pulmo any day now but will see him in about 3 weeks and I hope to get some more info. I told the new guy that I like upfront honest anwers and that I understand he cant predict life, I told him what I was told at the start of the COPD so I thought I was down to about 8 years out of the 10 with the rate of progression but felt I was down some more over the last year or so. He then told me that if I was lucky to get 10 years my quality of life would be nil. So I do have a ball park and my mom suffered from COPD as did 2 of her sisters, so I kind of know what to expect and how long it might run its course. I had stage 4 colon cancer in 2006 and I think that this is the cancers revenge in the form of the wegs but I have always been up beat about things and I still am. I guess what I told the Dr was that I dont want an extention of the diseases that I am plaqued with and want a fix, otherwise it a no go for me. Is that a fair choice or should I hang around to cause more financial issues for my wife ? Would I be selfish if I decided to for go a transplant. Of course this is only the preliminary stage of the transplant talk but I want to do whats right for me and my family. Transplants are expensive! they start at around 450,000 and thats just a single lung. What would you all do given a choice and considering any research including out of pocket cost?

[pberggren1]

I would ride these lungs out as long as possible. I highly doubt you would be a good candidate for a transplant now. You would be surprised at how well you can do with what you have.

[Tom]

I would ride these lungs out as long as possible. I highly doubt you would be a good candidate for a transplant now. You would be surprised at how well you can do with what you have.
Thats kind ofthe way Im thinking. The Dr says that as long as the wegs is under control that I should not be a factor in determining my status for a transplant. I have too many other factors against me, cancer, as well as a basil cell, kidneys and last year the cardioligist found a weak left ventrical. That was one highlight as disqualifyer on one transplant site. Im over weight from the pred. 30mg is as low as Ive been with the exception of last year I was admitted to the hospital and I was on 10 mg for a week and was supposed to go to 5 mg the next week but they raised me back to 40 til just last week. You have to be tapered as much as possible on the pred and I dont breathe on lower doses. Also there are no gaurentees that my body will accept the new lung or that I will get much more than 5 years if I am reading things right. I beleive that since I am in the end stage, I might get another 3 years, and you have to be in end stage to be considered for a transplant. Im not troubled by my prospects as it is. I might be just ornery enough to hang around another 10 years! Yeah I questioned my canidacy as tranplant patient. But maybe she was trying to instill some hope in me. Im fine as things are!

[pberggren1]

I bet you will be around a lot longer than 10 years.

[Tom]

My goal is to live forever, but 10 more would be fine. Ive seen a signature on one of the forums that reads something about getting into the record book of living as long as I can and Im breaking records at every moment. I'll just have to see how far end stage COPD takes. If I get 10 more years or 10 months OR 10 days, I will go with out so much as a whimper. Life is good though!

[mishb]

My goal is to live forever, but 10 more would be fine. Ive seen a signature on one of the forums that reads something about getting into the record book of living as long as I can and Im breaking records at every moment. I'll just have to see how far end stage COPD takes. If I get 10 more years or 10 months OR 10 days, I will go with out so much as a whimper. Life is good though!

It appears that you are I have the same life goals :tongue1::biggrin1:
- don't even worry about the 10's ........go for the "forever"

[Tom]

Oh trust me, 10 is just a number. Forever is the goal! I had a neuroligist in 2000 when I broke my back that said I must have a gaurdian angel. He said I would walk and I did but he kept me in the hospital for 10 days because I had bleeding around my sinal cord and he was worried about infections and warned me that an infection could result in death. Derrick Thomas of the KC Chiefs, same type of injury but his was bleeding around the spinal cord and eventually died from his injury. I beat the stage 4 cancer and my oncoligist just shakes his head and laughs when he sees me and says remarkable. He said when they closed me up after finding cancer on my bladder as well as the colon, the uroligist just looked at the gastro and said, "He's not going to make it!" I wound up diabetic, then come the wegs, undiognosed even tho I had the symptoms it all got tied to a radical cancer surgery where they turned every organ in my body looking for more surprise from the cancer. The lobectomey. Later we find its wegs and done lots of damage and the Drs couldnt treat immediately til they had confirmation and certainty that I could handle the meds they would give because of my previous medical history. I believe I do have an angel on my shoulder because I have been beating the odds for years,including an attack from a supposed friend with a knife at age 16 and nearly died from strep throat several years ago , went around with a leaking appendix for a week or more before I went to the ER where they were minutes of calling my wife because I reacted to the morphine they gave and they were losing my vitals. I think the secret that I would share is all ATTITUDE, not to much gets me down and forever might be here and now but yes it is a forever.

[HopeinTN]

Wow you have been thru the ringer. Glad you are still above ground. Yes, attitude is everything. I know it's tough to for all of us to have one at all times, but even some of the time is good enough.

Keep up the good work!

[annekat]

Tom, I can't add much to the above comments, but welcome to the forum and I'm glad you started posting. Sounds like your timeframe and mine are very similar, with being dxed in early 2011 after a couple of years of sinus issues. With me, too, it was when it went into my lungs that I got the dx. But mine are pretty well cleared up now, although I am having my first real flare. A lot of coughing and breathing problems but I think it is originating in the sinuses, with stuff dripping into the bronchii.... will see my pulmy next week and make sure. In any case, you have had a harder time of it than I, and have scarier stuff to think about right now. So, I wish you well, and keep us posted.

[Tom]

Tom, I can't add much to the above comments, but welcome to the forum and I'm glad you started posting. Sounds like your timeframe and mine are very similar, with being dxed in early 2011 after a couple of years of sinus issues. With me, too, it was when it went into my lungs that I got the dx. But mine are pretty well cleared up now, although I am having my first real flare. A lot of coughing and breathing problems but I think it is originating in the sinuses, with stuff dripping into the bronchii.... will see my pulmy next week and make sure. In any case, you have had a harder time of it than I, and have scarier stuff to think about right now. So, I wish you well, and keep us posted. Ive posted before ,I just dont do a lot of follow up because I get so tired so fast. When I was dx'd and I started reading about the WEGENERS and as I found forums with other wegs people, I found we all had a lot in common with the symptoms. some of us were dx'd earlier with the disease and then those like you, myself and others a littler later in the progression. I couldnt belive the apologies I got from 2 Dr's for not testing, or considering vasculitus, they passed my complaints off as effects from the cancer treatment and surgery, this actually went on for at least 4 years and 2 years with the sinus'. I take responsibility for the delay in treatment for the sinus. I went and got treated for sinusitus, 6 months later I went and was treated again but referred to an ENT who had me taking allergy shots. Now that the Dx has been made I am off the allergy shots for 2 years now and still have some sinus issues but I can breath through my nose anyway. Wegeners,in most cases they tell me ,they dont look for right away,unless there is a tell tale symptom, but I had purpura on my legs when I went in to the ER for phuemonia which turned out to be the wegs attacking my respitory system. I hadnt felt well for 3 weeks but then the rash showed up, so I went to the ER. I believe I mentioned my broken back in 2000, I will say that prior to the injury I would get a sore back from my job. After the injury I learned that a sore back is just that. I had felt the same pain with strain as I did with a broken back. I tend to believe that we all feel the same thing with the wegeners but some on different levels. I like to stay upbeat about my health and glad for each day. Anyway, I do alot of lurking on different sites and learn as much as I can. I have actually been able to form questions for my Drs by reading this forum as well as others. I wont say I dont get down at times, I hate the fact that my activities have come to a vrtual stand still becaue Im only able to be active for about 2 hrs a day til I wear out. I hate that my wife does things that I shuld do like take the garbage out. Or help carry groceries in. She gives me a bag to carry with maybe a loaf of bread and butter for example but get tuckered just carrying that in. I tell her to let me help and she stands aside and I take too much and I will get winded everytime then she says to just please rest. That type stuff is a blow to my ego and Ive always been active. Wegeners is a focus of my days but reminded by the damage that it has done. Anyway, Thanks for the well wishes and right back to ya. I try to stay updated on the forums. Tom

[annekat]

Oh, I can relate.... it is very time consuming getting involved with the forum and if you get tired fast, then you wouldn't push yourself to always follow-up. I didn't post for a long time and then when I did, I started slow and then maybe went overboard.... but I live alone and have no responsibilities to other people, and since I didn't have the energy to clean my house, etc., the forum was one of the few things I could do.

I also got something of an apology from my ENT doc, who'd been treating me for 2.5 years for sinus and ear issues, and I'd also been getting allergy shots for two years in his office suite. When my saddle nose appeared, and I'd already learned some things about WG, I went marching into his office and got a dx by biopsy of my septum. I could have pursued that earlier but of course didn't want to think that I had it any more than he did.

I never had the purpurea or a lot of the other problems you've gone through.

Don't wear yourself out posting here, and do take good care of yourself! Don't worry about taking out the garbage or bringing in groceries.

[Debbie C]

I had purperea last year on my legs and didn't know what it was so I googled rashes with wg and there was a picture that looked just like my legs. I went to the er and told them and they insisted I had nothing but poison ivy. I told them to go look it up but they wouldn't and I left with a script for antibiotics which I threw in the trash on my way out.
Tom if you don't mind me asking,how old are you. The reason I am asking is that I have COPD also and I sometimes am having to take deep breathes just to try to breath. My pulmy has me a albutal sulfate with a nupulizer when I need it. I haven't used it in years but had to drag it out the other day and have used it a few times. Also I have noticed my sinues are draining into my throat and it feels like my throat is clogging up. I'm in remission right now and as far as I know have never had a flare.I hope this isn't one. I go see my ent Fri. but my pulmy is on vacation for 3 weeks.

[Tom]

I had purperea last year on my legs and didn't know what it was so I googled rashes with wg and there was a picture that looked just like my legs. I went to the er and told them and they insisted I had nothing but poison ivy. I told them to go look it up but they wouldn't and I left with a script for antibiotics which I threw in the trash on my way out.
Tom if you don't mind me asking,how old are you. The reason I am asking is that I have COPD also and I sometimes am having to take deep breathes just to try to breath. My pulmy has me a albutal sulfate with a nupulizer when I need it. I haven't used it in years but had to drag it out the other day and have used it a few times. Also I have noticed my sinues are draining into my throat and it feels like my throat is clogging up. I'm in remission right now and as far as I know have never had a flare.I hope this isn't one. I go see my ent Fri. but my pulmy is on vacation for 3 weeks.Hi there Deb, I am 56 years at least til July. Its sort of ironic that theyt old you it was poison ivy, I was volenteeringat a lake and wasnt feeling well sor some time. I got up one Sunday morning and there was this rash, I told my wife it was like heat rash or I got into something. It was that day that I went to the ER and a Dr spotted it right away. The COPD can cause you to take deep breaths and not be able to exahle or even to get a full breath in. You could be having an exasperation, in which case you should be seen by a pulmo. The albuterol and nebulizer will help. With the wegs and the sinus', I do have what feels like drainage into the throat but I get more of the crusting in the nasal than anything. Again, back to the COPD, are you or were you a smoker? When I smoked, I would smoked upto 3 pks day. as I puffed away I would get what you are describing. I quit the smokes for an hr or so and the inhale/exhale function went back to a some what normal thing. After I quit in 2006 the breathing got better but I was out of shape. It all came to a head when I flared with my lungs and went a couple of months til I started coughing up the blood. It wasnt til a couple of months later that I had the rash on the legs and already had a lobectomy some time before for the growth on my lung that they dx'd wegs. I beleive, cant prove or say with certainty that I got wegs in all its glory during or just after my colon cancer surgery. Most of my complaints started after my surgery. I belive I would ask the pulmo for a re evaluation, do a spirometry test and maybe a blood gas test. I would also push the issue of the drainage with the ENT. Wegs is a weird thing. I am always on the lookout for a flare. What I am experiencing right now is what I would have been worriedabout the return of my cancer. I try not to get too consumed but I am at a point right now with my o2 levels and burning lungs that I am teetering on calling the dr or just going to the ER which is where she will send me anyway. Be vigilant and take no chances

[annekat]

Debra, your experience at the ER pisses me off. I guess most of us would be wasting our time going there with that symptom.

I don't have COPD and sympathize with you on that. I've had a lot of asthma in my life pre-WG and have also used the albuterol inhaler as well as steroidal ones from time to time.

I have had the sinuses draining into my throat throughout WG whether I was in a flare or not. But then I've never been declared in remission, though I thought I was close when this current flare appeared. Yes, it can clog things up and make it hard to breathe. The albulterol inhaler can help open things up when that happens. I try not to overuse it; I'm sure you know all about that. Anyway, I also hope you aren't in a flare; I wouldn't think draining sinuses would mean you are, but if it is out of the ordinary for you, then, I see why you'd be concerned. I hope the ENT visit goes well. I see my pulmy (main WG doc, so far) this Tues. to check on my flare.

[Debbie C]

Tom, I am also 56 until June ! I unfortunately smoked for about 40 years (about a pack a day ) but a quit the day of my lobectomy 2 1/2 years ago.I have an appt to see my pulmy in March after his vacation but I went and had a spirometry test done a couple of weeks ago and the guy doing it says I did better than he thought I would. I go to my ent Fri. and I am definately going to see whats up if I have a sinus infection or wg acting up. If you are feeling that bad and trust yr er I would go if I were you. The er closest to me doesn't have a clue so I hate going there. I really hope you start feeling better and it is not the cancer coming back.Keep us posted.

Anne.Yea I don't know if this is a flare or just a sinus infection or the change in the weather. But this just started recently. I guess I'll find out Friday. And as far as that inhaler goes I only use it in desperate times,I don't want to become dependent on it either.I had to take my mother for a stress test today so I picked up the cd and report I had from that barium drinking and x-ray ordeal for my hernia the other day. And he said my esphogus has folds in it !!!!!! That's a new one:bored: didn't have much to say about my hernia though ! Good luck Tues.