[heart catherization done and more news.]

Just wanted to update everyone. I had the heart cath done last Friday. It was not a fun experience. I got to be completely awake for it.. oh the joys of medicine.

Unfortunately, I was right and the heart has extensive radiation damage. The cannot fix it with a stent they will need to do bypass surgery. The doctors are worried as there isn't much to work with due to the damage but they are going to try to take a vein out of my leg and put it in my heart. I also have a lot of damage to my chest from all the other chest surgeries, missing ribs etc. They are worried about rebuilding some stuff.

The surgery is scheduled for Friday!!! (they wanted to do it the next day) so I'm not thrilled. I've been down this road before with broken ribs and tubes etc and now that I know what's coming it has made me very, very nervous. I am worried about recovery and trying to bounce back one more time.

If anyone has had anything like this done please let me know how it went and what to expect.. I am very worried this time around. Naturally my stress at home isn't helping the situation.

thanks to all of you!!! Tami

[I finally have some information on SOB and pain]

Thanks Becky..

They only allowed me to go home because I promised to avoid all stress till my surgery tomorrow.. lolllllllllllllllllllllllllllllll

We both know how likely that is to happen!

Thanks for the kind words.. I hope that things will be better when this is over.

Tami

[I finally have some information on SOB and pain]

I went to have my stress test yesterday (finally, after begging them to look at my heart and not just my lung).

I had been having the SOB and burning pain all morning and my stress test was at 11:00. They did an echo stress test. I walked for just a bit and the doctor of course wanted me to push it so I walked until I couldn't breath anymore. I got off the treadmill and my heart, the pain, the SOB were quite severe. They took my BP and it was 179/110 and by then I was gasping, turning blue and feeling faint. I laid down and they looked at my heart quickly but I can't deal with lying down when I am SOB I feel like I'm smothering. So they quit trying to look at my heart and let me up. I was really having a bad time and they gave me some nitro which helped but dropped my BP down to 70/40 and then I was faint, sick and chills.. It was not a fun time. They wanted to take me by ambulance out and fly me to a large hospital. I kept saying no, it will pass, it will pass.

After oxygen, some more meds and 3 1/2 hrs. I was allowed to leave but I have to drive to the "big" hospital in my area and have a heart catherization. Looks like the one side of my heart is blocked. I honestly felt like saying "I told you.. I know my body". They said depending on the extent they may be able to put a stent in? Depends on how bad it is I guess when they see it.

I know if the scheme of surgery this won't be too bad but I'm less than thrilled about starting with hospitals again. This may help my SOB but to what extent I don't know? I'm not sure how this will help/hurt my chance of retirement disability which I began the paperwork on? The cardiologist I saw told me that because I don't have a history of heart disease, not over weight or other problems with BP etc.. that while it could be a placque build up it's probably due to the radiation I received. But hopefully I will know tomorrow.

While I'm happy to know the cause I wish it weren't quite so drastic with surgery. I'm worried about my kids being at home and lots of very stressful issues there. So I guess I'm worried how this will all play out.

Any advice, thoughts, prayers would be welcome. Just one more chapter I guess...

[Ct results update]

I guess it's an update. The CT results my PCP sent to me said NED but there appeared to be some fluid on my left side from the pneumonectomy. I posted a message to Dr. West and he replied that this does sometimes happen, the chest fills the empty spot where the lung was with fluid.

I was happy that he answered me prior to my appointment last week, because when my PCP told me that that happens and it looked fine I asked why did it happen now when the CT scan I had a long while ago didn't show it. Why fluid now? Hummm... she didn't know that answer. ((sigh)) so now I'm heading for a stress test and I'm seeing a pulmonary doc. Although it's not till close the end of the month. I'm a little worried about the stress test because I know walking is going to bring on the pain in my chest/back and the breathing problem. It will be worth it if it gives them an idea of what's going on. Hopefully it will also show what my problem is. I had an EKG last month that was "irregular" so maybe the stress test will be of help.

What if they can't find out what is causing it? How can they just not know wht's going on?? Don't even want to go there I guess..

Anyway, NED is a good thing and I'm glad the CT was clear. Scratch that one (the BIG) one off the list and keep on looking.

Thanks everyone..!!

[CT scan results]

Thanks Katie..

I will try just that!

[update on SOB and pain.]

I updated this post with my CT results in the UPDATE section.

Thanks everyone for your help!!

[CT scan results]

I thought I should move to updates rather than the general section. My doctor just emailed me my results from the CT scan I had this past Wednesday. I am thankful that she didn't make me wait till my appointment at the end of the week.

Here's what the report said and the note the PCP added.

IMPRESSION:

1. Status post left pneumonectomy with fluid in the left hemithorax.

2. Otherwise no evidense of metastatic disease.

"Tammy, the did see changes consistent with your prior pneumonectomy, but no signs of tumor or metastatic disease. Also the right lung itself looked normal and there was no fluid or thickening around the lung."

Okay.. folks any idea what THIS means?? Honestly, I didn't think the issue was ever with my lung. I've never had any issues with my lung not even the original tumor. It was outside my lung. My lungs have always been clear. I thought it was something with my heart but I guess it's just some kind of fluid. Can they do anything for this? What could cause this? She told me to continue the inhailers and she would see me at my appointment at the end of the week. How are inhalers going to help this?

I will have a lot of questions for her when I see her at the end of the week but if anything has any information or thoughts that would be helpful. I'd like to have some information before I talk to her!

Thanks everyone!

[update on SOB and pain.]

Thanks everyone.

I had a CT scan yesterday which is the first to my chest in a long time. Other areas have been done but this one was really concentrated there. they couldn't find a vein.. I hate that.. and started looking at my ankles. I thought this can't be good. She finally gave me some heated blankets and that helped but my arms are black and blue. I see my PCP on Oct 1 for the results.

I do have an appt to see the pulm doctor but the soonest I could get in was the end of Oct. they have me on the call list so if anyone cancels they call me.. I agree I think I will get some additional answers with him. Unfortunately with my insurance the PCP has to be the leader or coordinator that's why I keep going back to her for everything. Next month it's urologist, PCP, neurologist, and pulm.. I think I also need to add THERAPIST in there too. Maybe anti anxiety meds might help. I didn't use them at all when I had C and I guess that's why I really didn't think about them but my anxiety level is very high. Working so much, the kids (although they are the best) and issues with my husband (who is NOT the best) are wearing me out.

I just hope by the end of Oct I will have some sort of idea what is causing this and where we are going. I had a lot of rads when ungoing treatment and I remember the waivers and the doc telling me that because my tumor was beside/around the aeorta that inevitably some of the rads would effect my heart. So I just keep wondering if it damaged it somehow? They seem to think it's all in my lung so I guess we'll see..

Thanks to all of you for your kind thoughts and wishes.. I was doing well for 6 yrs and I hope that they can figure this out and I can get back to life again!

[update on SOB and pain.]

I'm not sure if this should be in the general section or LC survivors? Like everything else I'm totally at a loss as to what to do.

I just wanted to give an update such as it is on my SOB and pain. I still have no idea. I've talked to my PCP a couple of times and we are doing test after test. The breathing is actually getting worse and with it my heart feels like it's going to burst out of my chest. Then the burning in my back starts. I have an appt with the pulm doc and another Ct scan scheduled on 9/23. The CT scares me but I need to know what's happening.. nothing showing up on xrays. LOL Becky did say that stress could be causing some of it and I believe she is right. My life is very stressful and some of the issues with the burning, chest tightness and numbness are almost like panic attacks. are they attacks from stress or because I'm in a panic when I can't breathe? We don't know that yet.

I've also been having kidney issues lately. I've been having issues with kidney stones and they went in a broke one up on Friday. one problem is I don't eat or drink much anymore. I don't eat cause it kills my stomach and I don't drink cause I have to walk up two floors at work to the rest room.. which I can't do cause I can't breathe.. UGH... I hate this. anyway my PCP gave me a script for 3 new inhalers. I tried the advair and didn't care for it. It hurt my lung when I used it.

I'm not sure where I go from here. In my mind, opinion I think it's my heart not my remaining lung or problem with it. I've always had some exercise induced asthma and now it just seems like when my heart is acting up, making it seem like I've just run a marathon, my lung starts to become asthmatic. I had an EKG a week before my surgery and they said it was irregular. I had two more the day of surgery. They were better. I think they were better because I was laying down, relaxed in bed. The one they did a week prior to surgery I was rushing off work, running back the hall to get it done before they closed and I was breathing heavy..

i spoke my my PCP about retirement and SSD and she said that it is tricky. If she just writes SOB they will tell me to get a scooter and that I can use that for work. I'm not sure how I'm supposed to get it in and out of the car, or get a car I can put it in.. not to mention I still get stand to be outside in the dampness or the cold.. so riding across campus in a scooter still doesn't really solve the problem. Unfortunately, she said the wait in PA for the SSD is about a year and if I'm turned down which I probably will be then I will wait at least another year. I keep hoping they will be able to give me some sort of diagnosis as to why zi can't breathe and what the heart issue is but after a few months of endless appts I don't seem to be any closer to that.

I'm really frustrated and really worried. I can't seem to get it under control and I am really struggling. My home is so stressful that I have many attacks and the kids worry as I am just gasping for breath at times. I hope that I can get some help from someone on what is going on.

Just a little update and I will keep you posted as to what happens next. Thanks everyone for listening and your encouragment.

[pneumonectomy, pain, shortness of breath years later]

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..

[pneumonectomy, pain, shortness of breath years later]

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.

[question about pain]

It's been a while since i've posted. But I do read all the time. I've been having some issues and I can't seem to get any answers I'm hoping that you guys can give me some guidance.

I seem to be hanging in there no terribly major issues. I no longer see an onco and haven't for ages. Just my regular PCP. My lung and other junk was removed years ago and I don't really have too many issues with breathing except that I do live in PA and with the recent cold weather/asthma it has been causing more problems.

That said.. I am having a new problem that no one seems to be able to figure out. I have a burning pain/pain that comes and goes. It is intense when it happens and it's getting more frequent. I used to get it more when I was out in the cold, doing something etc. but now I'm noticing it in the house when I'm rushing around etc. It's an intense kinda burning pain that seems to go up my bronchial tubes (middle of upper back), out towards the shoulders/collarbone. even a tingling down my hands. It hurts alot but after a 5-10 minutes it seems to go away. about a year ago and off and on since then I've also had my hands, face turn white or blue.. just off and on a couple of time.

My PCP physican ordered a ultrasound of my heart. nothing. xrays-nothing.. nothing is showing up anywhere. Nothing seems to fit and they can't quite figure out what's causing it. It's not like a heart attack or GERD or anything like that. Has anyone out there had anything similar??

Searching the net (which I know can be dangerous) I did find something called Thoracic outlet syndrome. There are a couple different types, one is neurogenic and it sounds like it's possible. It involves the brachial plexus nerves.. it also mentions the hands turning white. Although one symptom is pain it doesn't say burning pain.. this is an intense pain. not a dull ache or anything.. i can't describe it any other way than burning. It also involves the collar bone and I do have some issues with that area.

Anyone been diagnosed with this? Heard anything about it?? Considering that I had 4 chest surgeries prior to the pneumonectomy,(plus rads and chemo) my original tumor was in the left bronchial tube.. it seems like they would have considered this? Given my history? But maybe the symptoms don't really match??

If anyone has heard or experienced this I sure would love to hear your experience.

Thanks.

[3 arguments]

EVEN GOD ENJOYS A GOOD LAUGH!

There were 3 good arguments that Jesus was Black:

1. He called everyone brother.

2. He liked Gospel.

3. He couldn't get a fair trial.

But then there were 3 equally good arguments that Jesus was Jewish:

1. He went into His Father's business.

2. He lived at home until he was 33.

3. He was sure his Mother was a virgin and his Mother was sure He was God.

But then there were 3 equally good arguments that Jesus was Italian:

1. He talked with His hands.

2. He had wine with His meals.

3. He used olive oil.

But then there were 3 equally good arguments that Jesus was a Californian:

1. He never cut His hair.

2. He walked around barefoot all the time.

3. He started a new religion.

But then there were 3 equally good arguments that Jesus was an American Indian:

1. He was at peace with nature.

2. He ate a lot of fish.

3. He talked about the Great Spirit.

But the most compelling evidence of all - 3 proofs that Jesus was a woman:

1. He fed a crowd at a moment's notice when there was no food.

2. He kept trying to get a message across to a bunch of men who just didn't get it.

3. And even when He was dead, He had to get up because there was work to do.

[Bye Bye Clinical Trial]

I'm sorry the clinical trial didn't go the way you hoped. However, I did want to share that I live in PA and went to Fox Chase. Dr. Goldberg did my pneumonectomy and was wonderful. Two other surgeons who operated on me (one was at Geisinger medical center ) told me I was inoperable and NO ONE could remove the tumor. Dr. Goldberg did and I have been NED since then.

The hospital itself was wonderful (before and after surgery) and because C is what they do they seemed to be much better at answering questions and getting things done. I would give them a try if they are close to you.

If you want any other information feel free to PM me!!

Good luck..

[CT or MRI which is better?]

Hi everyone..

I've been having some "issues" not feeling well at the moment. Anyway, at the ER the other night the doc decided to do a brain ct scan to check for masses and bleeds. I was in a lot of pain, vomiting etc. It's actually the first brain CT I've had done since my pneumonectomy.. let's just say I haven't been good at my follow-ups. It's just something I'm not able to handle anymore. However, at 3:00am when your head is going to explode I was willing to do about anything.

Anyway, the doc said "no masses or brain bleeds". which is great however I'm still having problems. During the last week or so my best friend has also been having some headaches and other issues. She had a brain MRI (her doc doesn't use CT scans). She has just now been diagnosed with MS. Her doctor told her that CT's tend to miss things. MRI's are better. Even during my cancer treatment I always had CT's, except for the PET scan.. never had an MRI.

Anyone know the difference between the two? Does it really depend on what they are looking for as to which they use. I guess I'm just curious and given that we have SOME similar symptoms I'd like to have the peace of mind that my CT would have shown something if anything would have been there at all.

((((sigh)))) it's always something.

Thanks..

[Getting to Know You - February 21]

My son was very excited about it. He's 14 and loves science and math.. (stuff I'm not real into )and wanted the WHOLE family to watch this exciting event.

We have been waiting for it all week.. Both my son's (14 and 16) and my daughter (21) and I were out in the yard. We actually went out a few times to watch the shadow and finally the copper glow. The last time we went out we were all standing there looking. An amazing event I thought and I looked at my kids all huddled together (it's cold in PA at night) and thought THIS is an amazing event as well.

Finally my youngest son looked at me and said Whoever said the best things in life are free was right.. and he WAS right.

It amazes me sometimes how I continue to be blessed.

[new side effect/symptom?]

I haven't posted in a while but always read the board I've been around too long now. I just have to check in.

I don't know the names anymore and it saddens me to see so many folks newly diagnosed.

Anyway for those who remember I went through all the treatments and had a pneumonectomy several years ago. Since then no issues really and no other treatment. I just seem to keep hanging in there and getting on with life. My last xray was last year and it seemed fine. I don't see an onco anymore just my PCP.

As some of you know my home is less than idea and my stress level is very high. I work several jobs about 80 hrs a week trying to keep my family together etc. I've been having some strange symptoms/issues and I thought I'd post about them just incase anyone else has had them or have heard of it.

The last few months I've been having headaches, a little dizzy off and on and unable to sleep which I've chalked up to stress etc. However over the Thanksgiving and Christmas holidays I've noticed that my hands are turning blue. It's random and I don't seem to have any other symptoms. Last night at a New Years party my lips and mouth started turning blue as well. I'm not short of breath or having any issues breathing. I do exercise and have never noticed this problem before. I don't really notice it but the people around me are very concerned as it looks very creepy. my hands don't really tingle or anything they just turn blue. Years ago I was diagnosed with Raynaulds phenomenon but this is different.

I hope to go to my PCP this week or next to ask her about it but thought I'd post and see if anyone else has had this..

Thanks.. Tami

[John]

Ry,

Nothing I can say could possibly ease your pain and like everyone else I am filled with shock and saddness.

You and John have been such a source of support for so very long. I am truely sorry for this terrible loss

My thoughts and prayers will be with you over the next few weeks.

Tami

[Inspirational thoughts From Randy]

I needed that today.. thanks Randy.

[numbness in legs, what is up with that??]

I'm having some leg, feet issues that are beginning to become tough to ignore.

After all my treatment i had some neuropathy in my fingers and feet. Nothing major but enough to know that I had it. However in the last month I have noticed my feet would hurt, then I noticed they would itch and tingle some. Other days they would be fine but more and more frequently they would itch and sometimes feel like they were asleep. The last week I've notice the pricking, tingling feeling like my leg and especially my foot is asleep. Happens to both but mainly my left side. This morning when I work up my leg was "asleep" and now at work it's still asleep. It never seemed to last this long before, it's hard to walk on and feels very uncomfortable.

Is this more neuropathy? Why would it be getting worse? Could it be a symptom of something else? I have had any treatment for aabout 5 years so it seems odd that now during the last 3 -4 months I'm having so many problems. The only thing I can remotely think of that has changed is my working more. In my full time I sit alot but my other two part time jobs I stand. I worked at Target the other day, started at 7:00 and worked till 12:00 noon (you have to stand the whole time) then i drove right to the bar where I worked till 9:00pm and in a bar you are on your feet all the time.. so I'm not sure what's going on.

I know I should go have it checked and I may break down and do that eventually but just wondered if those of you with neroupathy had those symptoms.. on line they decribe the symptoms as just numbness and mild tingling.

Thanks everyone for all your information...

[I was grieving, but your responses have helped...thanks]

Cheryl

I have also been around a LONG time and I remember the incident well. I am sorry for what happened to you. I agree with the others.. nasty PM's are never, ever justified. I've received some myself in the past, now I mostly read messages and don't post much. However, I feel like if I really have something to add I will. This is a tricky place sometimes and even though I've been here a long time I don't always feel like I fit in.

I just want you to know that I have thought and prayed for you many times and wondered how you were. I know that you were quite ill when you quit posting and many were very worried about you. As far as continuing to post, I hope you do. You have such a wealth of information that you can share with the "newbies" and also many people here who do careabout you and want to help you through the rough times.

Continued prayers for both you and your husband..

Tami

[Question about Carboplatin]

I had both the cisplatin and the carbo.. the cisplatin was much worse.. physically and mentally on me.

The carbo didn't have nearly the infusion time of the other and as already mentioned isn't so tough on the kidneys. I think you will find the carbo is a welcome change and hopefully you will tolerate it well. I have problems with neuropathy, nausea etc with the cisplatin that I didn't have with the carbo.

I guess all that really matters is that it works.. Good Luck!!! keep us posted.

[reposted updateon Joanie55]

Dana,

Give her a hug from all of us...

Tami

[not one but two]

(((Randy)))

Warm blankets for both you and daisy to curl up in.

I'm so sorry she is so ill...

Tami

[My Soulmate Rests in Peace Tonight]

I am so sorry for this terrible loss. ((((hugs)))) to you and the kids.

You were a wonderful caregiver and wife to your sweet husband. He was way to young to be taken from you and your children. This terrible evil disease

Peace and prayers to you and your family as you heal.

Tami