Needing to vent

[Joan M]

My recovery isn't going too well and it's depressing.

Since July 11 I've been home recuperating from the thoracotomy to remove a fungus which grew in the cavity created last summer by the radiofrequency ablation I had to treat a recurrence of a lung tumor removed a year earlier by video-assisted thorasic surgery (VATS). And now I know why VATS, or minimally invasive thorasic surgery, is preferable to a thoractomy. The recovery from VATS was so much easier. I was back to work in four weeks.

I'm still having "tightness," or an elastic-band feeling, just below my left breast and lateral, and sometimes just below my left rib cage. Sometimes there's tightness in my left breast.

I sent an e-mail to the surgeon asking whether there's any way to determine specifically what is causing the problem? I think he and his nurses might be sick of hearing from me about the discomfort.

I'm very concerned about ending up with chronic post-thoracotomy pain (which I've read about online), because I have to go back to work.

It's worse when leaning back. In general, it gets so bad sometimes that I have to stand up (even when I'm tryng to watch a movie) or sit at a table hunched forward with my forearms resting on the table, in order to relieve the pain. Lying on either side helps and alking helps too. But when I stop, it's back again.

The Percoset does not seem to help (that is, there's discomfort regardless of taking it). I have been taking 2 1/2 tablets a day, and this morning I took only 500mg of Tylenol. No Percoset. Also I dislike taking the drug. But since it's now past noon I'll probably have to take one soon.

I did not have this feeling of discomfort when I first came home from the hospital (I remember sitting and reading novels and magazines all day without this discomfort). It started July 25. Earlier that day I gardened and then went to a luncheon. (I had seen the doctor on July 22, and he said to go about my normal activites.)Nevertheless, I was taking it easy while gardening for about 45 minutes). I was using some light-weight loppers to deadhead some flowers and trim a few plants. But, later in the evening, while sitting still, it felt like something "moved" in the area under the left breast (and I thought, "What was that?"). Later, the discomfort started and it hasn't really stopped since.

I'm wondering whether something shifted? Most patients are off Percoset in about five weeks.

Of courese I'm grateful that the path report showed no cancer, only the fungus, but I'm very frustrated because I'm due to go back to work Sept. 1 and I'm wondering whether I'll make it. Also, I'm not getting paid because I used up my paid time off last October when I had the craniotomy, and 12 months did not pass before the thoracotomy, which would have set the clock back to zero. I've been at my job just under three years and was only entitled to four weeks of full pay in a 12-moth span and that's it (two weeks for every year).

Thanks for listening.

Joan

[tricia keegan]

Joan,

You've been through so much and I'm sorry I don't have any experience or advice to offer you but I really hope you feel lots better soon

[StephN]

Dear Joan -
You have been having a bout with this last procedure! I hear you!
From personal experience I know that secondary effects after procedures can be almost worse than the disease itself!

I know you have researched extensively about that procedure, but is there a chance you can get some massage or physical therapy from a pain specialist?? There should be someone in the New York area who could help you.

Getting back to work seems also causing you some stress with the worry, and this may add to the whole pain picture as your body is not really relaxed for optimal healing.

One other thought. WATER EXERCISES in a warm pool. Some of the gals here have reported this type of therapy has done them a lot of good after various procedures.

[Sheila]

Joan
I am wondering if you have a slight muscle tear, or just inflammation to a muscle in the area....it seems that something you did while gardening may have caused this, as you said it wasnt noticeable before....maybe a rib xray or an MRI of the area might show whats going on. Is it left or right sided? Please keep searching for the answer....you dont want to have to take the pain pills to get through the day. Sending a gentle hug and know that you are in my prayers and thoughts that this will resolve.

[Faith in Him]

Joan,

I, too, know how frustrating the after-effects of treatment can be. I hope that you are able to find some relief soon. Pain is very depressing especially when it limits what you are used to doing. I hope that this gets all resloved before you return to work.

Keepin you in my prayers,
Tonya

[Laurel]

Joan,

You did not say whether you called your surgeon or not. You felt a shifting, you say. Hmmm. Wondering if you did not collapse something in there? I really feel compelled to urge you to call your doc. since the pain began post exerting yourself with gardening. A portion of a lung can collapse causing great deal of discomfort, so can a clot sometimes.

I do not wish to alarm you, but I think further discussion with your surgeon is a must. If he tries to blow you off go to your E.R.

Please let us know.

[vickie h]

Dearest Joan,
I'm sorry to hear of the difficulties you've been experiencing, no wonder you're feeling depressed...that's a lot for anyone's plate. Can you go see a pain specialist, or have you already done that? I don't know if they can be of help but hopefully they can uncover or help whatever is going on and you will be able to return to work.
I'm praying for you, Joan, all the way. There is nothing more daunting than pain and it is no way to live.
You've always held a special place in my heart and I've followed your posts....so inspirational and supportive for others who are struggling. Thank you for being the sweet sister we all need. Now we're all praying for this pain to cease and for you to feel good again. Please let us know how you are doing.
Sending you love and healing energy and my hand to hold,
Vickie

[Pam P]

Joan - I'm so sorry to hear of what's going on with the continuing pain. I agree with others that I hope you pursue an answer as it seemed to have started as a result of activity - some injury to tender tissues -rather than post surgery pain. MRI, PT, massage therapy... all worth pursuing. I really feel for you on the work worries - time off w/o pay, stress about having to return in Sept. It's enough to deal with the physical stress adding the financial/career worries is soo much. Can you pursue temporary disability? or return to work at reduced hours for awhile? My thoughts and prayers are with you.

[Karen Wheel]

Hang in there - I am lucky as I don't know "how" you feel as I have not walked in your shoes - but I vote with the note from Laurel!

I know that I feel (lots of the time) that my doctors here in Italy, that they think I am completely madd - however, I keep asking more questions and pushing when I feel I need help.

I think you should insist that your doc SEES YOU! Or, like Laurel says - go to ER! If you have something serious - you need to know sooner, not later.

Sending you healing energy! Hope this helps! Karen

[suzan w]

Hi Joan, I would certainly have that 'shifting feeling' checked out! You are sure carrying around a heavy plate! As for your nurse and doc...tired of hearing from you? Well, I know when I feel like that sometimes I need a great big hug and for someone to tell me that everything is going to be OK. If I am ever a nurse, that is what I would do!!! So here is a great big gentle hug from me to you!!! XO Suzan

[Patb]

A agree to get it checked out since you felt something
move. I wish you the best and hope you get some
answers and feel better soon. Take care
patb

[Jackie07]

Joan,

Sorry for all the stuff that had happend to you. Come to the Board whenever you feel like to 'vent'. As 'Dr. Frazer Crane' states in the show 'Frazer': "... I'm [We're] listening..."

[Believe51]

Joan, I am so sorry to hear of the issues in your healing, I cannot even begin to imagine how that feels. I have been saying healing prayers for you but I will vamp them up some. Hang in there Tiger, you will get some relief and answers soon. Please keep us posted Lovey and vent whenever you need to. Love to you tonight.>>Believe51

[Joan M]

I sent the surgeon an e-mail and one of his nurses called after discussing the message with him. He does not think that anything in particular happened to the ribs or muscles and said that the elastic-band feeling is normal for this type of surgery.

They were concerned that I haven't been taking enough painkiller.

Even though most patients are off the painkillers in five weeks (I've been taking them since July 11), it can take longer for some.

Admittedly, I've been skimping on the Percoset due to the constipation and indigestion it causes. The prescription calls for 1-2 tablets every four hours, which is a maximum of 12 tablets per day. I started with only four tablets per day for the first few days and then cut it down to three, and then down to two. Also, since I had minimally invasive thorasic surgery and the radiofrequency ablation previously, the thoracotomy was more extensive and the recovery can take longer.

I'm also concerned about getting addicted to the painkiller, although the nurse said I can't get addicted because I'm using it for pain. I've heard this argument before, and truthfully I don't understand it. The drug is a narcotic, and the fear is that more and more will be needed to get the same effect, or pain relief.

Even though I'm trying to get off the painkiller, I went back to three a day, and I'm supposed to take 600mg of ibuprofen in between. It seems to have helped.

I've been walking every day. The nurse told me to stop gardening and housecleaning. I was using only my small vacuum cleaner, which is like an electric broom, but she said it puts too much pressure on the torso muscles. I have a cat and I'm always cleaning up cat hair. I'm now using only the dustmop.

I like the idea of physical therapy. Walking is good and range of motion exercises (and I like the idea of a pool, too), but not using the vacuum cleaner (even though the surgeon said at my July 22 office visit that I should go back to my normal activity and not lift anything over 30 pounds in my left hand. But, of course, I haven't lifted anything nearly that heavy. And I'm left-handed.). I do laundry, but don't carry heavy loads. Friends and cousins take me grocery shopping, also to doctor's appointments, etc. (my immediate family lives 90 minutes away). I can't drive while on painkillers (and I don't think I could right now anyway).

My follow-up will now be with the pulmonologist, and I'm scheduled for a CT scan in three months. I saw him last week, and he'll also be checking in with the infectious disease docs. I'm still on the antifungal agent, but I'll be finished in a few days. He also wants me to use a mask when gardening.

I'm anxious about getting back to work but trying to just go with the flow. If I can't make it back September 1, then I'll have to live with that. Normally, I work from home one day per week, and I've thought about trying to extend that. But I'd need a doctor's note saying that it's okay to work from home, and I don't want to get myself in a bind if it takes longer to recuperate (or I have long-term problems from the surgery). Right now I wouldn't be able to sit up all day.

I've checked out my disability options. This is something I started to do a few months ago when Pam posted about retiring and disability, but I followed up last week and finally got the lowdown on how short-term disability, long-term disability, Social Security disability and Medicare all work together. I have a few more questions for the free legal agency I called, and then I'll post the information on the board for anybody whose interested.

I really appreciate your thoughts and prayers. I was becoming discouraged, and you've been a great in helping me keep positive.

Love you,

Joan

[Mary Jo]

Hi Joan,

I just returned from a mini vacation with my hubby and haven't been here for a few days. I have nothing to offer but only wanted to give you a ............................gentle hug.

Love,

Mary Jo

[jones7676]

So sorry to hear about your challenges. All I can do for you is tell you I care and I hope you are well soon and the frustration is over.