Post pneumonectomy

mrmust

My boyfriend was diagnosed in Aug. 05 with non single cell carcinoma stage IV of the right lung. Only one node was infected in the mediastinum. Started out with chemo/radiation and that didn't work. Then he had the pneumonectomy. Had recurrent pneumothorax of the good lung. Underwent resection of apical blebs and pleurodesis. He is only 3 weeks post op and is very short of breath. At home on 2 liters of O2 but any little activity wipes him out. I am worried that he may not get much better with the breathing. If anyone has had an experience of this sort, please post a response. I would like to hear how others have done in this situation.
He also has no appetite and was 165lbs and is down to 130lbs right now. I have to sit on him and force him to eat! (kidding).
He did smoke for 20+ years but quit in 2004. He is 38.
Any response is greatly appreciated.
Jill

Plymouthean

Hi. I'm a survivor of nsclc, 3a. I was diagnosed on May 5, '01. Treated with chemo/radiation/ surgery. Upper right lobe removed in October, 01. I was 67 at the time. I also had difficulty breathing. That feeling is very stressful. First, I would suggest that you ask the doctor for a prescription for an anti-anxiety medication, such as Atavan/lorazepam. That's what I used, and it helped immensely. I also used a small simple plastic instrument (inspirometer?) to do breathing exercises. That was very important, and helpful in my recovery. If the doctor will give your boyfriend the Atavan, it will go a long way toward recovery by reducing the stress of not breathing well. Once the breathing is somewhat under control, walking, - even very short distances - is about the best thing that I did in my recovery. Start out with short distances, and build up to whatever the body will take, without overexertion. With exercise he should recover very well. My doctor told me that a person can run a marathon on one lung. (I'm not about to try that one!) As for eating, - it is very easy to overwhelm the patient with food. Instead of "three squares a day", try many small meals, served on bread and butter plates. Keep his favorite snacks handy to him so that he cn just reach out and eat something, rather than have to ask for it, or go to another room to get a snack. Don't even think of counting calories, unless you are trying to serve high calorie food.(a good idea at this point) Initially, I consumed gallons of instant breakfast products, and ice cream. As I felt better, I ate more standard food. Soon I was eating everything in sight! I started my journey at 208 pounds, and dropped to 165, at the lowest point. As I started to recover, I steadily gained weight. I regained all the lost weight, plus some extra. I was a heavy smoker right up to my diagnosis, when I quit "cold turkey". I have heart problems, etc., etc., - which I point out only to show that someone older and in poorer health than your boyfriend can recover fully from this disease. You are both in my prayers, Please keep us posted.

mrmust

Plymouthean said:

Hi. I'm a survivor of nsclc, 3a. I was diagnosed on May 5, '01. Treated with chemo/radiation/ surgery. Upper right lobe removed in October, 01. I was 67 at the time. I also had difficulty breathing. That feeling is very stressful. First, I would suggest that you ask the doctor for a prescription for an anti-anxiety medication, such as Atavan/lorazepam. That's what I used, and it helped immensely. I also used a small simple plastic instrument (inspirometer?) to do breathing exercises. That was very important, and helpful in my recovery. If the doctor will give your boyfriend the Atavan, it will go a long way toward recovery by reducing the stress of not breathing well. Once the breathing is somewhat under control, walking, - even very short distances - is about the best thing that I did in my recovery. Start out with short distances, and build up to whatever the body will take, without overexertion. With exercise he should recover very well. My doctor told me that a person can run a marathon on one lung. (I'm not about to try that one!) As for eating, - it is very easy to overwhelm the patient with food. Instead of "three squares a day", try many small meals, served on bread and butter plates. Keep his favorite snacks handy to him so that he cn just reach out and eat something, rather than have to ask for it, or go to another room to get a snack. Don't even think of counting calories, unless you are trying to serve high calorie food.(a good idea at this point) Initially, I consumed gallons of instant breakfast products, and ice cream. As I felt better, I ate more standard food. Soon I was eating everything in sight! I started my journey at 208 pounds, and dropped to 165, at the lowest point. As I started to recover, I steadily gained weight. I regained all the lost weight, plus some extra. I was a heavy smoker right up to my diagnosis, when I quit "cold turkey". I have heart problems, etc., etc., - which I point out only to show that someone older and in poorer health than your boyfriend can recover fully from this disease. You are both in my prayers, Please keep us posted.

Thank you so much for your response!
He is doing the breathing exercises at home and will be having outpatient pulmonary therapy soon. I know that alot of it is because he just had surgery on the one and only good lung and the combination of the two is enough to knock down an elephant. Taking a shower and walking to the bathroom are major events. I will suggest the Atavan.
And as for the eating, it is getting alittle better. He was a pickey eater to begin with so finding meals he likes is difficult. I have been visiting McDonalds alot lately and he eats that. And that, we all know, has lots of calories to fatten him up!
I am just so worried that his breathing will never get back to "normal" It is so disturbing to watch. He had to quit his job and needs 24 hour care until he can make it up and down the stairs. I know he is very frustrated but actually is keeping a good attitude and spirit.
It is so good to hear from somebody in the same or similar situation. Gives me hope. I will tell him about running the marathon. That will make him laugh!
Anybody else who has anything to add please do so.
I will keep you posted over the next few weeks.

jadjr

mrmust said:

Thank you so much for your response!
He is doing the breathing exercises at home and will be having outpatient pulmonary therapy soon. I know that alot of it is because he just had surgery on the one and only good lung and the combination of the two is enough to knock down an elephant. Taking a shower and walking to the bathroom are major events. I will suggest the Atavan.
And as for the eating, it is getting alittle better. He was a pickey eater to begin with so finding meals he likes is difficult. I have been visiting McDonalds alot lately and he eats that. And that, we all know, has lots of calories to fatten him up!
I am just so worried that his breathing will never get back to "normal" It is so disturbing to watch. He had to quit his job and needs 24 hour care until he can make it up and down the stairs. I know he is very frustrated but actually is keeping a good attitude and spirit.
It is so good to hear from somebody in the same or similar situation. Gives me hope. I will tell him about running the marathon. That will make him laugh!
Anybody else who has anything to add please do so.
I will keep you posted over the next few weeks.

Hi
I also had a lobectomy about 5 months ago. The previous advice is very accurate. I would also add that it takes time. Try to be patient. It was at least 3 months before I regained any semblance of normal breathing but it is much improved. Most important do the breathing and physical exercise.

Hope it goes well good luck

BILL914

I had a pneumonectomy on 12/2/04. Had my entire left lung removed. I was 58 yrs old at the time. It was a long slow recovery (at least from my point of view). Prior to the surgery, I was 175 pounds and went down to 148 at my lowest. I did not have any appetite at all, even though I had my sister visiting and tempting me with all kinds of my favorite food. Before the surgery, I had 6 weeks of daily radiation and 7 weekly chemo treatments. I too was a long time smoker. Started at age 14 and quit 6 years ago. Now for the good news. All my follow up tests so far show no signs of any problems. My breathing although it is not what it was before the surgery allows me to do some hiking (hills are tough though but remember I am not a kid any more). I can ride my mountain bike and paddle my kayak. Things will get better but it takes time. Your boyfriend must keep a good attitude and not give in to it. He should push himself with doing excercise as it can only help him (with the doctors approval of course). Good Luck.

PostalFran

BILL914 said:

I had a pneumonectomy on 12/2/04. Had my entire left lung removed. I was 58 yrs old at the time. It was a long slow recovery (at least from my point of view). Prior to the surgery, I was 175 pounds and went down to 148 at my lowest. I did not have any appetite at all, even though I had my sister visiting and tempting me with all kinds of my favorite food. Before the surgery, I had 6 weeks of daily radiation and 7 weekly chemo treatments. I too was a long time smoker. Started at age 14 and quit 6 years ago. Now for the good news. All my follow up tests so far show no signs of any problems. My breathing although it is not what it was before the surgery allows me to do some hiking (hills are tough though but remember I am not a kid any more). I can ride my mountain bike and paddle my kayak. Things will get better but it takes time. Your boyfriend must keep a good attitude and not give in to it. He should push himself with doing excercise as it can only help him (with the doctors approval of course). Good Luck.

Hello, I'm new to this site and am glad I came here. Feb 05 I was in hospital with pneumonia and left lung filled with fluid. They drained it and wanted to do an open chest test to check my lungs and I refused. (That hospital doesn't have a good operating room record!!) Anyway I went to another hospital in Philly Pa, that already has records on me and visited a Thoracic surgeon. He had ct scans, PET scans and finally did an thoracotomy and partial decortication. When the results were sent back from pathology, they were then sent to Emory in Atlanta. Results came back that I had fibro sarcoma. At first they wanted to remove my lymph nodes, but on June 22,2005 I was told they were going to remove my left lung. I was stunned, shocked overwhelmed.... to say the least. Did I mention scared? Here I am a 57 year old overweight female with NO MEDICAL PROBLEMS who LOVED to work in the garden IS about to undergo this major surgery. Well, I was told I'd be in the hospital for 10-11 days; I went in 6/24 and got out 8/03...43 days. I got infected from a pick line and then somehow got a blood clot on left side (that I still have), developed fluid around my heart that had to be drained. Finally had 2 weeks in therapy and came home 8/3. Starting 9/3 did 5 1/2 weeks of very aggresive radiation. I started all this in June weighing 284; after radiation I was 221 with a very bad radiation burn that put me back in hospital for 6 days. Have gained 20 lbs back. I was told in Nov that they wanted to do chemo JUST IN CASE there were any tumor cells floating around. I completley lost it and said no. I was so afraid. I wanted to know if there are ANY tests they can do to see IF there were any cells and was told no. If I have to have the chemo I will, but I'm still scared.

PostalFran

BILL914 said:

I had a pneumonectomy on 12/2/04. Had my entire left lung removed. I was 58 yrs old at the time. It was a long slow recovery (at least from my point of view). Prior to the surgery, I was 175 pounds and went down to 148 at my lowest. I did not have any appetite at all, even though I had my sister visiting and tempting me with all kinds of my favorite food. Before the surgery, I had 6 weeks of daily radiation and 7 weekly chemo treatments. I too was a long time smoker. Started at age 14 and quit 6 years ago. Now for the good news. All my follow up tests so far show no signs of any problems. My breathing although it is not what it was before the surgery allows me to do some hiking (hills are tough though but remember I am not a kid any more). I can ride my mountain bike and paddle my kayak. Things will get better but it takes time. Your boyfriend must keep a good attitude and not give in to it. He should push himself with doing excercise as it can only help him (with the doctors approval of course). Good Luck.

It's me again. I'm always tired and when I do walk, I get short-winded. My left side hurts and I think it is because I've gained the weight. My surgeon says this type of surgical procedure takes about a year to heal. That makes me so depressed. I can't do the things I used to do; my husband says I REALLY changed; that my temper is really short now. How long was it for you? I know everyone is different, but still would like to know. :-)

Plymouthean

PostalFran said:

It's me again. I'm always tired and when I do walk, I get short-winded. My left side hurts and I think it is because I've gained the weight. My surgeon says this type of surgical procedure takes about a year to heal. That makes me so depressed. I can't do the things I used to do; my husband says I REALLY changed; that my temper is really short now. How long was it for you? I know everyone is different, but still would like to know. :-)

Hi there. I posted above regarding my experience with surgery. You will feel progressively better, but it will be slow. Your short temper is definitely due to frustration with not being able to do all the things you are used to doing. That will come with time. Based on my experience, the best way to help yourself now, is to walk, and do breathing exercises when you don't walk. Don't overdo it, but walk for five minutes today, six tomorrow, seven the next day, etc., etc...... Make it a brisk walk, if possible. The goal is to get the heart rate up, and circulate the blood to get oxygen to your whole body. Walking will help burn up some extra calories, too, which may help with the weight gain. When I am inactive, I gain weight, so I try to be as active as possible. As for follow-up chemo/radiation, I had both, and I had NO side effects from either. The doses are a lot less than the primary treatments, and are good insurance against any "bad guys" lurking in your body. Be kind to yourself, and be patient. Better days are ahead!