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A new battle - COPD
Hi everyone, I have been trying for the last six months or so to ignore what was happening. I mean I noticed but you know sometimes you can convince yourself of anything. I have been having a shortness of breath and just explaining it away. You know" I'm tired, allergies, bad air, pollution." I just didn't want to even go near this new problem.
You would think after 12 plus years of survivorship I would know by now to suck it up and get things checked out. Last week started with me having a chest cold to having COPD. Chronic Obstructive Pulmonary Disorder, gee that was a surprise, I guess not. I feel that this was a logical progression of my medical history. But given that acceptance I now have to come to terms with it and move on.
I haven't learned to much yet but I will. Right now I need to get over this bout and then where and how do I go from here. I just feel kind of lost right now.
John
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Replies to This Discussion
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Permalink Reply by John H MOD on -
Well another week has passed and thought I was getting better or so I thought. I mean last week seemed to be breathing better and coughing less. Then the pollen came like snow from the grasses around here. I mean in my lifetime never have I seen everything covered in yellow.
Then the coughing and breathing just went to hell. So now I guess i ll go see the doctor again and see what they can do. I can at least function during the day. I can't push to hard but it's ok. At night it gets so much worse the wheezing is driving me crazy.
I don't want to complain to much but I feel the more others know what to expect long term surviving maybe someone else could avoid or mitigate what happens. I feel like I've been a pioneer blazing a trail for the future long term survivors that will certainly follow us. That and I need to vent to people who understand how it feels to be in an outof breath situation. Thanks for listening.
John
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Permalink Reply by kindredspirit on -
John, I am so sorry about your breathing problem. Do the Doctors anticipate this will get better after the spring pollen problem? And remember John, you are an inspiration to all of us survivors, you have constantly boosted our morale, and given us hope! Now we want to help you in any way we can.
You are an inspiration to all of us, and we appreciate it very much!
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Permalink Reply by John H MOD on
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Hi Spirit, I really appreciate your kind words and everyone's kind words . It is so nice to hear the strength in all your words. For everyone who just reads and who haven't posted be assured we all have been where you are. We are here for you just like they are here for me. We have some great strength here when our voices are heard or read. I am so thankful for all of compassion we have here. Ok enough of me on my soapbox. I mostly just want everyone to know how much your words helped me. Once again I feel the fight in me coming back and kicking this stupid pneumonia out.
Thank you all, John
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Permalink Reply by Carolyn on -
John, I have written to you before. I have had right lower lobe removed with cancer Dec. 9 2010. I was diagnosed with copd several years ago. It used to be if I layed on my left side I did not hear the wheezing. So I layed on my right side. So now it is kind of on both sides. I just called oncologist and pulmonary dr. to tell them I have been coughing up blood again. 6 times in the last 14 days. I have had two broncostamies (sp) and they did not find out why coughing blood. It is small amounts, but I don't think the normal person does this ( and I am diffenately not normal lol) You can complain as much as you want to. No problem here. I am kind of getting tired of this stuff also. I am going to a cardioligist on Thursday because my blood pressure goes way up and way way down. I am not on any pills for blood pressure either I had an eletocardiogram last week. I have a daughter going to San Fran. to get bone morrow test and x-rays and MRI this Wed. Thurs. Fri. and Sat. I really want to go. They told me in rehab if I don't take care of myself I can't take care of anyone else. They went a week ago and her hubby went and 3 & 6 yr. old went. This time hubby staying home and her and a friend going.
I have not told my children about some of this stuff don't want them to worry. So now if you think you are complaining just listen to me. lol. I don't know what I would do with out friends and on line friends. My hubby knows about heart thing, but I am not going to tell him about coughing up blood again. Been doing it off and on for months.
I know this goes without saying but have you tried sleeping on 2 pillows Sometimes I wash my nose out with the nette pot and sniff it. This might or might not help. DO NOT use just water though use salt water or it will hurt like heck.
Take care my friend, and hope you are feeling better.
God bless, Carolyn
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Permalink Reply by John H MOD on
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Hi Carolyn, rest on your husband. He wants to know what you are feeling and how you are doing. They are right if you aren't well how can you expect to take care of someone else. Sometimes just letting someone know you are thinking and holding them close is quite enough. they too don't want to worry about you either. Keep up with what you are doing. Sounds like you have a good handle on it all.
Oh and were you complaining or venting? Sounds more like reality to me!lol
God bless and good luck,
John
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Permalink Reply by Carolyn on
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God bless you John. I think I was complaining and venting, reality, and feeling sorry for myself yep. My middle daughter had a double mysectomy 3 1/2 yrs. ago. As you know sometimes you think enough is enough. She is doing fine now. Thank God. She was also going through a divorce at that time. I was totally there for her all the way. It killed me to dump her blood and stuf like that. But you just kind of have to turn into a robot and do your job. I would rub her feet to try to help her relax. When I had cancer surgery I told her she needed to rub mine. (She does not like doing that at all lol). She rubbed them very lightly and I told her I could not feel it so she stopped. BRAT.. I pray to God my baby going to San Fran. will have good news. They are having a hard time diagnosing her. It is crazy.
I did call oncologist and lung dr. yesterday about coughing up blood again, but noone called back. Really there is nothing to be done about it anyway. I go to cardiologist tomorrow because my blood pressure goes up super high and then down super low. My grandaughter told my daughter about it yesterday, so she is going with me and probably my hubby too..
I think it is so much fun seeing all the specialist in town. I hope I get to meet them all. (Totally kidding) I am sick of it.
Enough about me. Did you rest better last night?????? I really, really, hope so. I got to thinking maybe the netti pot won't help you at all, or the pillows for that matter. I wish I could help you.
God bless you and I truly hope you are better
Your friend
Carolyn
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Permalink Reply by Maribeth Wall on -
John - Complain away, you so have deserved that right since the day you were diagnosed! This year for me the allergies have been horrible to deal with due to all this stinking pollen. I know what you mean about the breathing though because a few months ago I had a tumor blocking my airway on the left side. It was horrible because like you I had the wheezing, tiredness, cough and just couldn't seem to get enough air in. Oh and the spitting up blood didn't help either! Thankfully 3 weeks of radiation to that nasty tumor and what a world of difference for me. So I can and can't imagine what you are going through. You are a pioneer for all of us and you show us how to keep going but also let us all know that stuff happens and gets you down and you do worry about what none of us ever want to think about. I am only five years in but you give me hope that I can make it. It won't be an easy road, as cancer never is but we all just keep plugging along.
I pray that the doctors can figure this all out for you and make your breathing better and more manageable for you to be able to do everything you want to do. Hang in there and tell those doctors to make you better or we are all coming over!!
God bless,
Maribeth
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Permalink Reply by John H MOD on
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Hi Maribeth, well it's 3:40 AM and am still awake, wide awake. Damm steroids. Breathing a little better but now my sugar is high and I feel so wired can't sleep and of course work in another 3 hours. Oh well the guys better stay the heck out of the bosses way today. You knOw the routine you get something you have to give up something. Breathing or no sleep. I guess I ll take breathing , I know I don't want to be taking the long dirt nap right now, lol. I can always sleep later just not so much weezing is feeling good now!
Amazing how much strength you can get from people who understand.
I hope you are feeling well. I know we all have our burdens to carry, some more than others, but people like you in this world show us what grace really is.
God bless my friend,
John
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Permalink Reply by Maribeth Wall on
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Hi John - Aw, the wonderful steroids! Love what they do for the breathing but the rest of the body and head go crazy! That made me laugh when you said the guys better stay out of the bosses way! I said almost the same thing to my co-workers when I was on steroids. I told them watch out because I am going to be going from a raging, crazy on adrenaline overload to I can't keep my eyes open!
LOL, no dirt naps either! I know after the doctor radiated the area that blocked my airway it was so nice to breath normal again and not hear that constant wheezing. I hope you are getting much needed relief and this does the trick for you. Plus I hope for your guys sake you get sleep! Ha ha ha!
I am doing okay, just found out my stomach lymph nodes lite up the PET scan as well as a couple of the spots on my lung, that I just had. Guess that explains the annoying stomach pain I have been having. So back to chemo next Tuesday! Yee haw, M.S. and cancer active again all in a months time! Now that is what I call what the heck train just hit me! Okay that is the non trucker potty mouth version!!! Oh well, got my boxing gloves back on like you do! I enjoy looking at the flowers from the pretty side! :)
Take care of yourself and may the next couple of weeks give you much needed relief and back you your old self!
God bless and many prayers sent your way!
Maribeth
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Permalink Reply by Carolyn on
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Wow Maribeth, what an awsome person you are. You and John. God love you both. I am so sorry that the cancer has came back. We just kind of live on that track thing I reckon. Not train track either. Not that, that sentence made any since at all. I will leave it anyway. I will also have you in my prayers.
Keep the faith and the spirit
Carolyn
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Permalink Reply by Maribeth Wall on
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Thanks Carolyn - I think we all inspire each other and that is what keeps us going. You are amazing as well for all that you have been through. You show more patience than I would about the doctor not calling you back. I am not good at sitting and waiting especially if you are coughing up blood. I coughed up blood a few months ago and it freaked me out. Wow, I pray that San Fran. turns out good for your daughter. You guys sure have been through more than a few lifetimes of illness, you both need a well deserve break from it all. I will pray that everything improves and gets better for both of you.
Oh my train sentence I say because I work near train tracks and instead of saying I feel like a Mack Truck hit me I say I feel like a train ran me over. Just a crazy way of saying I don't feel to good and body is tired.
Keep on fighting Carolyn as life is so worth living and fighting for until God says otherwise.
Take care of yourself.
Maribeth
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Permalink Reply by Carolyn on
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My daughters name is Ginger if you would like to shoot up a prayer for her. One of my other daughters had a double mystectomy about 3 1/2 yrs ago. I know things could always be worse but damn it I think they could be better to, for all of us. yep I do.. There it is I said a cuss word. But oh well I think. I could not go to San Fran with daughter because I have a cardioligist appointment tomorrow to see why the heck my blood pressure goes up and down. I did not want to tell her though I do not want her to worry. I just wish I could take my childrens illness as well as my own. Mentally you can help them with, but physically what can you do.
Your hands are tied........... I really do wish I had the power to take all their crape... But I don't. The dr. did call me. I told him I did not know weather to call or not because it has happened several times before. It stays there for awhile and then goes away. I do not feel sick, not taking anymore antibiotics. I had to in March I was really sick. But not now. It is not alot of blood I cough up with phlem but some. Maybe that is normal. All of you people that don't cough up blood are probably not normal.. lol Truly I am glad you don't though. yep. Take care of you my friend and keep up the sence of humor. I know people think I am totally weird, because I act weird, and sometimes I am weird, but that is the only thing that keeps some of my sanity.. For instance at rehab I told them I thought oxygen was over rated. That is sick yep. But that is how I get by. I just want my babies to be okay. I have 6 grandchildren and 3 great grandkids. great grandkids are wonderful, when grandkids grow up and become pain in butt, then here come the precious little ones. lol I do love them all. Don't know what I would do without them.
Take care again & God bless
Carolyn
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