update on SOB and pain.

[Tami]

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.

[fillise]

Tami,

I'm so sorry you are having these scary issues. I agree you certainly need to find out what is going on. Whether panic or otherwise, it is not good for you.

I can't offer any advice about the SSD, but others here may have some experience. In the meantime, I will keep you in my thoughts and prayers.

Susan

[Calintay]

(((Tami))) I am so sorry you are having such a terrible time breathing. I certainly hoope it is just panic attacks. Have they tried to give you something to see if it panic attacks? I will keep you in my thoughts and prayers.

[michellep]

I can't even begin to imagine the fear you have with the not knowing. Push your docs for testing and answers please. Let us know how it goes.

(((Hugs)))

[jaminkw]

Tami, your life sounds just awful right now. I agree that they should be giving you something for anxiety while they complete these tests. The CT scan sounds like the right way to go next. I do believe the "not knowing" is the worst because the things you imagine can be worse than what actually is wrong. Hang in there and ask for something like ativan or zanac (sp?) while you wait for more tests and results.

Judy in Key West

[shineladysue]

(((Tami))), bless your heart , you are going through so much. The one thing I picked up on was you kept mentioning going to your PCP. Do you have a pulmonologist? A good pulmonologist would put you through all the proper tests and also send you for tests on your heart . I'm speaking from experience on this one. Aside from all that, he/she will usually order lots of blood work as well. Please let us know how you are doing. My heart goes out to you. As for SSD, first you need answers and a diagnosis before you can apply. That much I know... Good luck to you.

Hugs,

Sue

[Patti B]

(((((Tami)))))

I agree with Sue - maybe a pulmonolgist could help you better than your PCP. And I can't figure out why you are not on some kind of anxiety meds - maybe you should ask.

Also, and of course please ask your doc first, the burning in your back - if its high up between your shoulder bl;ades, could be acid reflux. Just started for me and I am taking Zantac 75 and it works fast. I read an article recently that lung cancer patients can be susceptible to that and it makes you cough.

Anyway, I hope you find some answers fast. Not knowing is the worst and I am sure thats causing your anxiety level to skyrocket even more.

Please take care and keep us posted.

Hugs - Patti B

[Tami]

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!

[Tami]

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

Thanks everyone for your help!!

[Outrider1]

Tami,

I am so sorry that you are having so much difficulty at this time. It sounds like you certainly have a full plate and the issues of your health are just adding to it.

A couple of other possibilities for you to consider (mind you I am no DR. but have experienced the same symptoms prior to cancer ever rearing it's ugly head).

Reading about all of your stress and also between the lines, have you considered that all of these symptoms are being caused by anxiety/panic attacks? Every one of the symptoms you describe fit the panic attacks I started having after my husband died. Not being a panicky person (I have always worked high stress jobs ie 911 operator for the city of Dallas tx, air traffic controller in the Navy, etc.) I was scared to death I was having a heart attack or some other problem related to my heart. (most panic/anxiety attacks make you feel like you are having heart related problems.) All of these symptoms cleared up after I went on anti-anxiety meds (ie.ativan) and anti-depressants, which I came off of in 2008 (only because the newest one they put me on made me a couch potato and the one that worked the best we had to keep raising the dose on). I still take the anti-anxiety meds, mainly because of the anxiety that comes with having a cancer dx. I also having some techniques to help with the anxiety, regardless of whether your symptoms are caused by panic attacks or not. If you are interested, you can pm me anytime.

I also had the burning and pain up between the shoulder blades starting after a car accident the week before my husband died (he did not die from the car accident, he died a week later from a massive heart attack, but that is another story). Since I only banged my knee in the accident, I could not understand why after 2 months my back and shoulders were still burning and hurting so badly that they could not be touched. It took from summer of 2002 til Jan 2004 for them to figure out that I had an infection in my gallbladder along with several small gallstones. (Gall bladder attacks are painful and don't cause the pain where your gall bladder is actually located.) Since none of the high powered antibiotics would clear up the infection, they took out my gall bladder.

My point here is that this could be something not so serious as a return of cancer or a problem with your heart. I do know that anti-anxiety pills will help, especially when you get overwhelmed with the stresses of your life. I take ativan (lorazepam-generic name) as needed and another that is prescribed often is xanax (alprazolam-generic). These are benzodiazapines and can be addictive. Also you can not have any caffine with xanax as it lessens how well the xanax works which means that you take more.

You are doing the right thing, getting all the testing done, so you can rule out any problems that are concerning you. But, maybe asking your Dr. for some anti-anxiety meds while you are doing so will help alleviate some of the anxiety and stress you are having while waiting on the processes of all the testing.

I am sorry this is so long, but I certainly hope you get some relief and am keeping you in my thoughts and prayers.

Dawn