pneumonectomy, pain, shortness of breath years later

[Tami]

It's been a long time since I have posted. I come in and read all the time but haven't posted in a very long time.

I am having some "issues" again and hoped I'd get some advice and wisdom they way I have so many other times. It's tough to get information from folks who have never been there or done that.

I am about 6-7 yrs out from my pnuemonectomy. Amazing how the time has gone. I see my PCP but haven't seen an oncologist in years. I have had a few problems with breathing, colds and the sort but that's about it. Recently things started going down hill and in the last year they are going that way pretty quickly.

I start having issues with shortness of breath and pain in my ribs/back. Thought maybe I had Thorasic outlet syndrome. Went to the PCP who sent me somewhere else and he looked at me, took my pulse and sent me on my way saying nope don't think that's it. Who knows what it could be?? maybe too many surgeries (gee thanks doc I could have figured that much). I had problems with my hands and face turning blue.. PCP sent me to have an ultrasound of the heart. Looks ok. While those tests were done a while ago (months to a year) and my breathing and pain are getting much worse. I am having trouble walking even short distances now without pratically stopping and gasping for breath. when that happens I have a horrible burning pain that goes up my back and out towards my shoulders. My hands tingle and get numb. It is very painful.. the burning is awful. Once I stop moving it will slowly subside. Before it happened mostly when the weather was damp or humid or cold. I was rushing to work. walking up a hill.. etc.. now it happens daily. I work in the basement at my building the rest room is up 2 flights of stairs. I try not to go to the bathroom all day anymore so I don't get that pain and SOB. My remaining lung feels like it's filled with concrete and I will use my inhaler but that doesn't help the burning or the numbness. I am having problems walking from the car into my work. Last summer I was walking my dog (slowly but ok) around my block etc. Now I can barely make it down the driveway before the horrible burning and SOB start. Also during this time my heart races and feels like it will beat out of my chest.. like I am terribly out of shape and my heart is racing trying to keep up.

I've had some issues with kidney stones/intense migranes lately as well and due to them I've had several ct scans. My organs have shifted way up due to the pneumonectomy and the last one they did a full body scan. However they really arent sure what's causing it. I don't know what to do because it's getting worse. I just can't accept.. who knows what the heck it is..

I've been researching postpneumonectomy syndrome but I'm at a loss. I also checked out fibromyalgia and neuropathy. As I said I am having problems working now and I have talked to my HR person briefly about disability although I don't know if having one lung is enough to qualify for SS disability. Since they can't seem to tell me what's causing the SOB I don't know if that would factor into it at all.

Does anyone have any ideas? I can't seem to find any blogs or sites with folks who have had pneumonectomys and are 5-10yrs out. I am just worried about what is happening.

Sorry this is so long.. but if anyone has an advice, wisdom etc. I'd appreciate it. The docs aren't being really helpful here.

[Connie B]

Hi Tami,

Sorry to hear your having all these problems. Are you SURE it's not your heart? Have you had a CT scan at all for rule out cancer? How is your blood pressure? Are you taking any meds and if so, what? God girl, this could be so many things. Okay, sorry to have to ask questions but I don't remember did you have any chemo and/or radiation done?

The numbness and lung pain is a mystery to me. It almost sounds like fluid in the lung. It's nothing I would take lightly, as I'm sure your not, but someone needs to check you over girl.

I have been a 14 year pnuemonectomy survivor if you remember and the problems I had were all heart problems over the last 6 years. I had severe SOB and I too could not walk across the room without damn near passing out. This was my heart problems that caused that. I also had problems from some of my heart meds I was on, and it caused me to be very weak and tired and just felt like crap all the time. It was my heart medication that caused all that, but I thought I was dying, it was horrible.

You do know this could be cancer related? I don't think I have to tell you that. Your PCP doesn't sound like he/she is pushing very hard to find an answer for you. You might want to try going to the ER? I don't know what to tell you with all these problems. None of them sound fun or good to have. I remember how horrible I felt with all my heart problems.

Another things that comes to mind is MOLD, you mention you work in a basement. Could this be something MOLD related. I'm just grasping as straws for you here. If I were you, I really would get pushy and start doing some serious screaming at your doctor.

My organs have shifts some too, and being a one lunger, but I have never had any problems like you have, and I can say that some of my In Person LC Support Group members (long term survivors) who are also one lungers have never shared these kinds of pains years after there pneumonectomy either. Most of us have had aches and pains of sort, but nothing as serious as you are having. Please get checked out and maybe go to the ER. Keep us posted.

Best wishes to you.

[luvmydog2]

Hi Tami,

I can relate to the shortness of breath but not the pain. Could it be two seperate things causing the problems. I did well for 6 years. In fact my onc actually told me as far as he was concerned, I was cured. I have been SOB for a year now and it gets worse each day. My onc said it was the fact I had only 1 lung and that was my new normal.

Have you had your blood checked? Are you anemic? That causes tirdness and SOB.

Here is something you might want to look into but may not want to hear. I have been dx with Chronic Leukemia. That definately causes SOB. My onc tells me it is common to get CLL and that it is one of the prices of survivorship.

Do keep us informed because I'd like to see what the result is sience we share the same symptoms. Also, you can draw SS with the lung removal. You can even work some also and not affect check.

[Tami]

Thanks to both of you!

Connie and Bruce.. I have had a chest ct scan and also one just recently a full body ct scan. No one seems to be able to tell me anything. I had a very complete ultrasound of the heart last year and it was unremarkable. They just can't seem to find anything?? I don't even know what specialist to ask for when I can't fingure out if it's a residual orthopedic pain, a lung issue or a heart. I don't take any meds right now. Because I've been having MAJOR issues with migranes in this last year (6 ER visits for them) they have been trying a variety of meds to treat them and also to prevent them. Blood pressure meds, and a variety of anti depressants and psychotic drugs at very mild doses nothing has helped the migranes and I didn't notice a difference in my blood pressure. Normally when I go to the doc my BP is low to average.. but my pulse is normally WAY above what it should be.

Connie-yes, I did have Chemo and rads. 2 chemo protocols and 12 weeks of rads. When they took the lung they also took the pericardium and some of the ribs.

The only thing that is vastly different at home is my stress level. I have a LOT of stress. I know that is a huge issue with my migranes and maybe it is with the lung issue? I don't get any sleep and I am extremely nervous most of the time. I don't know if that effects the heart or breathing. I just don't know if that has anything to do with it or not.

Bruce-thanks for the info on SS. As I mentioned I'm having such terrible breathing issues. I work at a University and I'm constantly having to run around buildings for meetings and "professional development" which is required. It is summer here in PA so I can do it s-l-o-w-l-y but in the cold I will not. I was afraid they would reject me since I am still working or because I didn't immediately apply for SSD when I had the original surgery. Seems strange that they wouldn't consider having one lung as a disability but who knows. I have trouble getting off work for all these tests and appts.. so perhaps the best thing to do is just apply now. I can't imagine I am going to just suddenly get better.

I am hoping to go back to my PCP next week and see where to go from here. I will keep you posted. I will suggest some additional blood work and see if that reveals anything.

Thanks so much to all of you..

[Snowflake]

Tami,

Stress manifests in many ways. Talk to your PCP about medication.... Stress for me is migraines and an elephant on my chest, and that feeling of doom all the time. Seek some medication if you can't avoid the stressors, and try to take it easy.

xxoo,

Becky

[beatlemike]

Tami,I cant be of help to you but hope you find an answer soon.