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My Mom - Is This Typical?


Guest MrsKrauss

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Guest MrsKrauss

My Mom (79 years old and in good health generally) was diagnosed with NSCLC in November. It is stage 1 and has not spread, so no chemo or radiation, just surgery. She had a lobectomy to remove the tumor on 12/18/08. She has two bronchial tubes, which they did not realize, so they damaged her vocal cords during intubation. This made her hoarse and breathy when she spoke in addition to the breathlessness from lung surgery.

After six days in the hospital, they removed the chest tube and sent her home. She had no energy for about two weeks. She didn't get better but she didn't get worse until 1/7/09 when she started feeling sick. We had an appointment with the surgeon that day. He took an xray, said he was sorry she was sick but she was recovering fine from the surgery.

Mom felt worse the next day, saw her GP because of concern about pneumonia. He did an xray and had her hospitalized because her lung was collapsing. The next day in the hospital, the surgeon inserted a chest tube because she has an air leak. He used only a local anesthetic. Mom was screaming. Two days later, he said the chest tube was in the wrong place and reinserted it, this time with morphine and percocet.

After 12 days in the hospital during which Mom's condition did not change, he swapped the chest tube for one with a heimlich valve and sent her home alone. He said she did not need assistance or special care. The first two days, she felt terrible, then started to feel a little better.

After a week at home, Mom finally started to feel better, then the chest tube fell out. She was hospitalized at her local hospital. She did okay for one day without the chest tube, then her lung started to collapse again. They transferred her to the hospital where the surgeon is so a new chest tube could be inserted using a CT scan to make sure it's in the right place. The surgeon's hospital did not have the type of chest tube her local hospital recommended (it's smaller than her previous one) so they sent one with her. The surgeon looked at it, said he'd never seen one before, said he didn't need a CT scan to insert it because he knows where it goes. He inserted it (with anesthetic) and left. A CT scan showed that the tube was in the wrong place so a different surgeon reinserted it using the CT scan (the reason she was sent to this hospital instead of her local one).

All along, my Mom's surgeon says he doesn't have all the answers and he doesn't know why she feels sick and why she is not recovering. Other doctors have given us information about why this may be, but the surgeon says they don't know what they're talking about. The surgeon seems to be highly respected by others in the medical community, or at least feared by them. The surgeon says an air leak like Mom has is 1 in 300 for him, although it seems a fairly common complication after lung surgery from what I read on the Internet.

My sister and I think that, at best, the surgeon is not being careful enough with my Mom and is not sharing information with us. We are ready for a change. I understand that he may not have all the answers, but he has inserted a chest tube with only a local once, and in the wrong place twice, and these seem like careless errors. Am I being unfair?

Sorry this got so long. As I am typing, I am realizing what a journey it has been. I would appreciate a reality check - is this typical after lung surgery, or is my Mom having an especially hard time?

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Mrs. Krauss, first of all, let me welcome you to our family. We have a ton of knowledgeable people here, who have gone through the procedure your mom has.

I don't have any personal experience with this. I was a caregiver, and my husband never had a chest tube. But let me just say that it seems like your mom has had an inordinate amount of trouble. I don't think you are being unfair in your opinion of the surgeon. At the least, it seems like a change of surgeons is reasonable, if your mom requires further surgical treatment. Prayers going up that she will not.

Lynn

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Mrs Krauss-

I, too, would also like to welcome you. Sorry you have the need to be here. This is a great site with tons of support and information.

I have not had surgery (am Stage IV) but all this seems like it is a reason for a second opinion. Is that an option for your mom. Unfortunately, we as patients and family members of patients need to be an advocate. Personally, I would run, not walk to another doctor.

Please keep us updated and I hope your mom is feeling better.

Hugs - Patti B.

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Mrs. Krause -

I've had thoracic surgery twice and was very fortunate to not have any of your mother's experieces. I agree with Patti, she should run, not walk, to another surgeon. Also, it's not a good idea to depend on just the surgeon for follow-up care. She should consult with a pulmonologist or oncologist in addition to seeing the surgeon.

Keep us posted, please.

Muriel

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Mrs Krauss

Welcome to this great site.I think it was very fortunate that your Mom was diagnosed early enough to have surgery. I too had a lobectomy and my chest tube was removed on the third day. I never had any of the problems your Mom had. I agree with everyone else in suggesting another Doctor. This guy may be respected in the medical community but he has made too many mistakes with your Mom. Take care and please let us know how things are going it.

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Hello Mrs Krauss and welcome

I am so sorry to hear about all of the troubles your Mom has had!! I have to agree with the others here and say, get another opinion and get a new doctor! This guy sounds like his ego is bigger than his abilities and that is so wrong!

Please keep us posted and let us know how your Mom and you are doing.

Warmly

Christine

PS.. the suggestion about consulting an attorney sounds like a good idea, too!!!

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Guest MrsKrauss

My Mom has had a second surgery by a different surgeon, and is doing better so far.

As I was writing my previous post, my Mom was having a rough night. The nurses did not know how to drain her chest tube, so the drainage was backing up on her. That was the last straw. My sister and I told Mom we had to change surgeons, and she agreed. I understood that I was supposed to arrange this with the medical director of the surgeon's practice. I called his office and his assistant (when she finally returned my call) told me they were calling in a pulmonologist to consult. I said I didn't want to fix the situation with this surgeon, we had lost confidence in him and wanted someone else. She did not know what to do and finally suggested I contact the pulmonologist who originally referred us to the surgeon. I did this and they seemed unfamiliar with such a request, but said they would work on it. I also called the hospital quality management office, and they said we have to tell them which surgeon to transfer her to, they could not help us..

The next morning, the referring pulmonologist's office called us to say they had another cardiothoracic surgeon who would take Mom's case, but he works only in a hospital across town (but still in the same group of facilities). So I drove to the hospital where she was, put her in my car, and drove her across town to the new hospital.

The new surgeon's assistant came in to see her within an hour. He sat down and talked with us for 45 minutes. Later that day, the surgeon himself and the pulmonologist stopped by to see her. The surgeon then called me at home at 9:30 at night to tell me his plan. They did a CT scan and a broncoscopy the next day, and the surgeon called me at home that evening to say he recommended surgery. Mom had a locatulated pneumothorax and probably an infection. He was going to clean up her lung cavity and reinflate the lung.

Mom had the surgery four days ago. It went well. She had a pocket of pus on her lung. He was able to almost fully reinflate it. They have cultured the germs and are giving her antibiotics. She is seen daily by the pulmonologist and surgeon. The floor she is on in the hospital is all respiratory patients, so the nurses are familiar with chest tubes, etc. She is getting excellent, attentive care.

It took two of the most difficult days of my life to change surgeons, but it was well worth it. Mom is in a much better situation and looks forward to recovery. She has stopped saying she would rather die.

There is an institutional resistance (at least with the previous hospital and surgeon) to asking questions and certainly to changing doctors. It makes you wonder whose need is being met by this system - certainly not my Mom's.

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I am so glad to hear that you personally saw to changing your mom's care. Good for you. And your efforts seem well worth it and just in time. I will save my comments about the previous surgeon and just focus on the positive. Thank goodness your mom is doing better now. I wish her a speedy recovery back to better health.

Sandra

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Mrs. Krauss.

First, welcome to this site. This is truly an informative and very supportive community.

After reading your former and latter posts, I can see that you showed much persistance and courage in being an advocate for your Mom - more power to you.

Right now, the most important concern is your Mom, and her recovery. It is heartwarming to see a daughter's love moving to advance that outcome.

From personal experience, my husband and I know that the first doctor is not always the right one.

Continued success to both you and your Mom,

Barbara

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Mrs Krauss-

Good for you!!!! You are being your mom's advocate and I applaude you for that. Unfortunately, somethimes this is what it takes to get the best care.

I hope mom continues to do better each day. Please keep us posted as to her progress.

Your mom is so lucky to have you by her side.

Hugs - Patti B.

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Mrs K, I don't know how I missed your post so I am coming in late. Welcome to the place where no one wishes they need to be but are glad they found. I've read your posts and am so happy you were able to take the bull by the horns and relocate your Mom to another hospital. When you reported that the surgeon said he didn't know why your Mom wasn't getting better, my first thought was duh, doncha? What an ordeal you all had to go through. I hope your Mom continues to improve. Keep us posted.

Judy in Key West

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Hi Mrs. Krauss,

I was completely taken back by your post about the inadequate care your mom received from this surgeon and these no clue nurses. Your poor mom should NEVER have gone through what she did. I was livid after reading your post and so upset. I read everyone else's post and was going to respond when I read your last post to us.

I am so trilled for the turn of events. It seems like you finally found a good medical team who knew and cared about her and her condition and to right on the ball and helped her. How wonderful that they also keep checking up on her.

My heart goes out to you, as I could only imagine how helpless you felt and how upset you were with that horrible treatment she received. This could have turned into a tragic satiation.

Please keep us posted on her recuperation but I know she will finally heal and will be pain free and hopefully LC free.

Count your lucky stars that you took the bull by the horns and changed that horrible situation. You never gave up! Your are a wonderful daughter and your mom is so lucky to have you by her side.

Take care,

Maryanne

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