Mom's Recovery

[dihen]

Mom had a right lower lobectomy on March 8, with an extended hospital stay and air leak, but finally got the chest tube for the air leak out on March 31.

She is getting very depressed because she needs oxygen almost 24/7 and easily gets out of breath with the smallest amounts of exertion even when she is connected to the oxygen. She is using 2L at rest and 3L with exertion.

Mom has had severe COPD since 1990 but remained active but prior to surgery, her pulmonary function tests were lower than the norm, and there was some question as to whether she was a surgical candidate. Her pulmologist said "no" but the lung surgeon said "yes". She basically rolled the die and opted for surgery. I just scanned her pre-surgery reports and her FEV1 before surgery was 0.97 (or 48% of predicted). I don't know what this means but I am wondering if her oxygen-dependency is just related to surgery or if it is a sign that she will not get back enough lung function to live without oxygen? Her surgeon keeps saying 'she looks bad on paper but a much different story in person'. I guess my question is this: is a month after surgery too early to determine if she will need oxygen 24/7?

We keep telling her to give it more time, she will get better, but are we giving her false hope?! She hates being dependent on all of us, especially when it comes to cleaning her house and cooking for her, two things that she always took pride in before she got lung cancer. Even with her severe COPD, she always perservered and found a way to keep active, and do for herself and my dad.

Is it normal for some people to be on oxygen for long periods of time, like over a month? She will start pulmonary therapy in early May and maybe that will help improve her lung function?

Whenver I see her, she looks great but then when she moves around and get breathless, she starts to cry..and then I just lose it.

[Linda661]

I think we both spoke together in posts about oxygen use when you first got here....all I can reasonably say is that my mom is still on continuous oxygen (5-6 liters, for almost 4 months now) and the doctors are expecting her to be able to come off of it at some point -- they don't seem concerned for how long she is on it as a predictor of long-term dependence. Her major tumour has a big portion of her lung collapsed so, as treatment continues, she should find her need for O2 to lessen and then be nil as her lung begins to re-function.

We have had mom's O2 needs reduced (she was at 4 liters at one point and was progressing nicely to 3 liters), even with her current lung situation, with physical/occupational therapy work. Unfortunately, an unexpected bout of messed up bloodwork, a necessary blood transfusion, and some complications after that knocked her progress back at the moment. She is soooooo frustrated about that, but determined to do everything she can to continue to progress and get off of the oxygen.

I don't think you're giving your mom false hope. Hopefully some others who have had similar surgery experience will help answer your post more directly than I can.

All the best to you and your mom.

Hugs,

Linda

[rvillella]

I had my lung removed in August of 05 and was on oxygen most of the time till around December. I can function lightly (no long walks, stairs, or heavy lifting) without oxygen. I still use it at night when I sleep, and when I need to do anything strenuous. I thought I was doing really well until I had a small bout with pneumonia last week and am back on oxygen when I walk to far or try to do to much. Tell your mom that it gets better.

ralph

[Don M]

At my last surgery, I had the rest of my left lung removed. When I sat up at he edge of the bed for the first time, I got out of breath. I was somewhat taken aback. I had to be on oxygen for a month after surgery. I exercised with walks and used the spirometer religiously. I would walk around the block once the first time, and then 4 times within the first week at home. I carted my oxygen with me. Now, I can walk a mile in 16 minutes. I can go up a flight of stairs without breathing hard. I had good pulmonary capacity going into my surgerys. Your mom may have started out at a disadvantage in terms of pulmonary capacity, but I think she will get more back over time if she exercises as much as she can and eventully shed the oxygen at least in the daytime. She might still have to use it at night.

Don M

[dihen]

Thanks Linda, Ralph and Don for your very helpful comments. I imagine that everyone’s recovery is different, and oxygen needs are different from person to person. I guess the hard things about this disease are the ‘not knowing’ and ‘waiting’ it out periods. My family is not the most patient and sometimes we want things yesterday but we are learning to take it day to day with mom and hold on to all the small victories along the way.

Linda, your mom’s spirit/fight is so encouraging. I’m sorry for her setback and hope that she continues to recover and ultimately becomes less dependent on oxygen.

Ralph, thank you for your encouragement, and sorry to hear that you had a recent bout with pneumonia. I know pneumonia has always been the big fear in our family with my mom’s COPD. She had landed in the hospital twice with weird lung abscesses and once with a pneumonia, and boy, it took her months to get back on her feet. Hope you recover quickly.

Don, yes, mom sort of went through the same thing as you when she first woke up from surgery. Just sitting up was challenging for her in terms of getting out of breath. I am so glad to hear that you are able to walk a mile in 16 minutes – that is really great, and that you are doing well overall. It was very encouraging to read about your progress – thanks for sharing.

Thanks again – all of you.

Diane