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Not so good news...

elvan
Member
2 81 704

I had my CT Scan on Tuesday and saw my pulmonologist on Wednesday. I was feeling TERRIBLE.  Aside from my ever-growing shortness of breath, I have had so much pain for almost two weeks now, that all I want to do is sleep, just to escape it.  I have pretty much always done that, when the pain gets too bad, I sleep.  Of course, sometimes it wakes me up, but I am always hopeful that it won’t.

I was so short of breath when I arrived at the doctor’s office that I really had difficulty telling the receptionist why I was there.  I was gasping for breath so not getting any help from my oxygen which is by nasal cannula and this unit does not produce a flow of oxygen unless you are inhaling through your nose.  I was afraid I might pass out.  I had to sign my name on form after form and the signature I gave them has no relationship whatsoever to my usual handwriting.  I stood in the waiting room because I was afraid to sit down and not be able to get up or to compress my lungs even more.  When the nurse called me back, she took my arm and said, “We’ll take the shortcut.” She did not lead me to the scales which are on the other side of the office.  She took me straight to an exam room and told me I could sit on a chair or the exam table, wherever I was more comfortable.  I asked her if I could stand.  She had no objection; my breathing gets worse when I sit down or bend down.  She took my oxygen saturation and had the usual look of alarm on her face that everyone does, it takes some very precise breathing for me to be able to return it to the 90’s after I have been so stressed.  I got there and my blood pressure was not my usual 80/40 but a more “normal” 120/70.  I explained that my shortness of breath had been really severe, particularly lately since I felt like all my ribs were broken.  I explained that I thought it might be the result of a particularly severe coughing fit when I had choked on something.  Oddly, it didn’t appear the next day, it took another day to show up.  I remembered that because I had an appointment with my PCP the day after the coughing fit and I didn’t have that pain until the following day.  It took more time than usual for the doctor to come in and I remained standing.  When he did come in, he asked me if I was okay and I explained the pain thing.  He told me that he had gotten the CT results which the radiology department told me would take 3-5 days.  I felt a little uneasy that he got them so soon.  He pulled them up and showed me a “suspicious” area at the bottom of my left lung that had not been there last year.  It would have to be at the bottom since I only have my lower lobes after surgery in 2015 to remove my damaged upper lobes.  He pointed it out to me, and it definitely looks different from the other nodules I have had since before surgery.  It’s not particularly large but it is different. He said that he wants me to have a repeat scan in three months instead of waiting a year.  He tried to reassure me that it might be “nothing”, that he has seen this kind of thing turn out to be nothing that requires attention, and he has also seen it turn out to be an early sign of lung cancer.  Obviously, I am concerned.  Then he told me that there is a fracture in my thoracic vertebrae that also is new.  THAT would be the cause of the severe pain.  I explained the coughing fit and he accepted that since I have other compression fractures in my spine that have been there for years.  I am concerned, I cannot help it and my kids and husband are also concerned.  I also have a mole on my nose which I asked the PCP about and she is referring me to a dermatologist.  This is not new, I asked her and my rheumatologist about it months ago because it looked different to me than any other moles that I have. I think my kids are already planning my funeral.  I am waiting for the referral to the dermatologist to go through.  The pulmonologist wants me to see a pain specialist next week, he wants me to return to see him in three months, after the CT Scan, and he wants me to see the cardiologist who I saw back in December.  They were sure I had pulmonary hypertension then, but it turned out that I don’t.

That’s it…the latest chapter in my declining health.  I will see my new rheumatologist in March, my previous one retired.  I am going to get some sleep, hopefully I will be able to.  I might be around a little less.  I will TRY to be here, but my pain level and my fatigue level are seriously changing my life these days. Thinking of all of you and sending love.

Ellen

Tags (1)
81 Comments
Legend
Member

I’m sorry to hear you have to go through all of this. I hope you can get some sleep tonight. I’m giving you a gentle hug. I wish I was a multimillionaire I would get you a house with everything to make your life easier like a walk in spa tub, a cook, a chauffeur, a housekeeper and a private nurse to help you with all that you need. If I could find a cure for you I would in a heartbeat.   

Cousin-Itt
Member

Ellen

  I'm sorry for all the pain you are enduring right now  You are such a good caring person it saddens me knowing you are going thru this.  I wish I could somehow help you get thru this trying time. You have always been a friend to me on here. Sometimes we have to just put our faith in our doctors and believe in the best and usually they are right   Prayers

Carl

RachelMB
Member

Ellen,

No words just prayers and hugs! xoxoxoxo

Rachel

kristen-9-7-15

Awe, Ellen. Hang in there. I’m sorry you’re in so much pain. Thinking of you.

sweetplt
Member

elvan ((((Ellen)))) Not good news at all...I read this and I am sick to my stomach.  I hurt for you .... and there isn’t anything I can for you...oh I can do one thing...I am sending out a prayer for you right now....and lifting you up to the Lord...I hope the pain management can give you something to help.  

Please rest and take care of you Ellen...Love and hugs....Gotcha in my Heart ~ Colleen 

dsprague
Member

I am very sorry Ellen, may God hold you in his hands and get you through this, thoughts and prayers my friend.

YoungAtHeart
Member

My heart is hurting for you.  Too much; it is just too much.

Rest as you can.

Know that we ALL are thinking of you!

A gentle hug being sent your way.

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elvan
Member

Legend‌ Thank you, l did eventually fall asleep, l piled pillows around me so l would not try to turn over. It was a better sleep than usual. Ellen

elvan
Member

Cousin-Itt‌ Thanks so much. I like my pulmonologist, l did think he was a bit overwhelmed. Maybe it was because l was standing the whole time, LOL. I am hoping the pain specialist has some ideas, preferably not for an epidural. 

Ellen

elvan
Member

RachelMB‌ l will gratefully take those prayers & hugs. thank you, dear sweet Rachel.

Ellen

elvan
Member

kristen-9.7.15‌ Thank you, l think of you whenever l see a beautiful smile.

Ellen

elvan
Member

sweetplt‌ Thank you, Colleen, prayers are ALWAYS appreciated. I have hopes for pain management, l have run out of ideas. I can’t believe how long that blog is, l was so tired but l felt like l needed to reach out. Believe me, l AM resting, whether l want to or not.

Ellen

elvan
Member

Thank you, l appreciate those prayers more than l can say.

Ellen

elvan
Member

YoungAtHeart‌ ls that a CAT scan? Thank you, honey for always being there for me. I am so grateful for you. I saw a couple of bluebirds on a tree in my backyard. I was SO EXCITED! I have never seen them this early in the year. It was the day the storm hit, l think that was Wednesday. 
Ellen

Barbscloud
Member

Don't know how I can help, but do know that I care about you.   Hoping they can find some relief for you.

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Barb

elvan
Member

Barbscloud‌ Thank you, l care about you too.

Ellen

Ladybug--7-3-12

This makes me so sad.  Thoughts, prayers & hugs coming at you.  (For some reason I am not able to add a pic to this.)   I hope your pain can be addressed so you can keep some kind of activity up.  Heal, rest when you can ... recover.

Jennifer-Quit
Member

Keeping you in my thoughts and prayers Ellen

elvan
Member

Ladybug--7-3-12 Blog‌ I can’t seem to do an @mention of your name. I did not mean to make anyone feel sad,really. I just wanted people to know why l might not be around as much. Thanks for the thoughts, prayers, & hugs. Believe me, l am trying to heal AND to get some sort of activity.

Ellen

YoungAtHeart
Member

elvan 

Up until my new friend/pool owner neighbor took me to the nunnery to walk, I had only seen two in my ENTIRE life.  Now we see them EVERY time we walk there, and I am thrilled EVERY time.  They are truly magnificent!  If we could get them in a photo with cardinals, wouldn't that be SOMETHING?  Glad to know there IS still some joy in your life!  ♥

elvan
Member

Jennifer-Quit‌ Thank you. I kept thinking of you when the news shows were showing pictures of a road that goes between Arkansas & Texas & ONE side is plowed.

Ellen

Barbara145
Member

Sweet sister nurse Ellen.  Oh my goodness. I am so sorry you are suffering.  Praying the doc's can help.  I am heartened that you don't have pulmonary hypertension.  I feel like with help you can improve. Eat healthy (protein and fruits) and drink plenty of water. You are always in my prayers.   Love,    Barbara  

elvan
Member

Barbara145‌ Thank you, l am trying to eat healthy & l am drinking all of the water l can. Getting to the bathroom can be very challenging. I am hoping things will improve.

Ellen

MarilynH
Member

Oh my gosh sweetie I'm so sorry I was really really hoping that your two appointments went well this week but I also know how much pain you've been in and how hard it's been for you breathe so I've been concerned but trying to be optimistic, I'm sending up a ton of positive vibes along with lots of good thoughts and prayers for you Ellen, I'm so sorry that you have to go through all of this, love you dear friend and fellow EXer and most definetly EXtended family.

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elvan
Member

MarilynH‌ Thank you, honey. I know you were hoping for better news...so was l but it really COULD have been much worse & l know that. I am hopeful that my breathing will improve & that l can move around more easily. You are such a sweetheart, l appreciate those thoughts & prayers & positive vibes.

Ellen

MarilynH
Member

BobKatt22
Member

I am so sorry Ellen. My heart breaks for you. Hopefully the nodules disappear and your breathing gets easier

elvan
Member

BobKatt22‌ Thank you so much.

Ellen

maryfreecig
Member

As always, Ellen, you are in my thoughts and prayers. I hope that your pain and distress are lessened by the experts. Thanks for putting your cards on the table. 

elvan
Member

maryfreecig‌ Such a LONG blog, hope it doesn’t scare anyone from reading it. Thank you for your support & prayers. One day at a time, no matter what.

Ellen

Barbscloud
Member

I must admit Ellen, I don't read "most" long blogs.  You're one of the few exceptions.

Jennifer-Quit
Member

We so rarely get snow we are just not prepared for it.  I have been able to work from home this week and that is a blessing.  Thankfully I have plenty of food too because I have heard that the grocery stores are not stocked as truck cannot get there.  

indingrl
Member

That's MY prayer for YOU Ellen - YOU are a gift from MY Daddy God MY precious friend - OH HOW I WISH I COULD COME AND HELP YOU - cook some home made chicken soup for YOU

elvan
Member

Barbscloud l am honored. I don’t usually read really long posts either.

elvan
Member

Jennifer-Quit‌ The Arkansas side was completely cleared, l was very impressed. We have ice everywhere but it is melting today & will refreeze tonight. My son went to two stores Wednesday evening & said the shelves were pretty empty. Tried to get spring water or any bottled water but it was sold out. We are pretty “light” on some things but we are not completely out & we have power, thank God!

Ellen

Bonnie
Member

Oh my sweet Ellen, I feel so helpless when I read this...you are so very dear to me and such a large part of my quit and the emotional/mental/spiritual healing that began with stopping the smokes. I am glad you have sleep to escape the pain and hope it continues to provide you respite. You are at the top of my prayer list, my treasured friend. May you feel God's presence abiding with and in you.

Love always, Bonnie -1139 dof thx to YOU

elvan
Member

indingrl‌ Thank you, l would say YOU are the gift, Diane. I will have to settle for canned soup but that sounds pretty good. Thank you so much for the beautiful prayer. It’s very cold but the sun is out so the trees are glistening & looking beautiful. 
Love & blessings my sweet friend.

Ellen

Christine13
Member

Ohhh ((((Ellen))))  Praying things will be a bit easier when you get your pain meds.

I'm glad you can sleep to avoid the pain.  It sounds horrible, and it hurts my heart that you are dealing with so much.

As always I will light a candle and pray for help for you.

Strudel
Member

Dear Ellen - I get so sad reading your experiences dealing with so much. So much more than anyone should ever have to carry. I am so sorry. Although I know it is frightening, I think having a repeat scan in 3 months is best. Please feel all the love coming from here....and know that you are being lifted in prayer! We love you! 

Sootie
Member

elvan‌ Oh my dear friend........

My heart goes out to you. Reading your blog made me want to be able to DO something for you. You will be in my constant prayers. As I always tell you I so admire your courage in sharing what you are going through. Not only is it inspiring with how you keep going but the lesson the damage smoking can do is vivid.....and you offer it with your whole heart holding nothing back.

All of EX is praying for you and holding you close to give you strength.

KellanC74
Member

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elvan‌. hugs. Take care of yourself  

Giulia
Member

You know, sometimes I don't get it.  Well, probably most times I don't get it.  But I really don't understand why such a giving, loving generous spirit such as yours is being put to such a test.  Ongoing test.  I can't even pretend to know what it feels like to be you.  But I do know that you are very strong.  You are a survivor.  And you lift people up with your deep empathy.  Perhaps it is through your pain that your empathy is grown?  I know mine does by sharing your pain.  I send out radiating good thoughts, prayers and moments of utter peacefulness in your sleep.  And I send out Love to every cell in your body.  For Love I believe is a healing balm. 

CrazyQuitter
Member

OMG Ellen I am so sorry to hear all this! Hopefully they can at least do something for your shortness of breath and like I said on Indi's post we ALL hope you have a speedy recovery of some kind. I also hope you at least get one day of relief!

Please keep us posted as much as possible! Thinking of you!

elvan
Member

Strudel‌ Thank you so much, Kathy. I DO feel the lovr & the prayers. I will definitely get that scan & anything else that is recommended. 
Ellen

elvan
Member

Thank you so much Sootie‌, you all mean the world to me.

Ellen

elvan
Member

KellanC74‌  Thank you, what beautiful flowers!

Ellen

indingrl
Member

I am SOOOOOOO grateful to MY Daddy God for His tender mercies and love - SOOOOOOO good to read responses from YOU 

elvan
Member

Giulia‌ Thank you so much. I keep sleeping, l am not fighting it right now. I am guessing that l have sort of been in shock since l saw the pulmonologist although, my breathing has been SO BAD that l was worried about that scan & other than the first one, l have not felt that way. I think love is very powerful & l thank you.

Ellen

elvan
Member

CrazyQuitter‌ Thank you so much for the kind thoughts. Sleeping seems to be my best escape right now.

Ellen 

CrazyQuitter
Member

I don't blame you! I'd do the same if I was in so much pain like that!

About the Author
Retired RN, worked ICU/ER developed RA in early 90's, unable to work because of brittle bones from high dose steroids. Diagnosed with COPD 5 yrs ago but sure it was there and progressing long before. Live with severe chronic pain, degenerative disc disease, had both upper lobes of my lungs removed in 2015. Struggle with shortness of breath. Work in son's cafe as a cashier 2 days a week to be around people. I am a people/animal person. Lost my home and three cats in a fire on my ten month anniversary of quitting smoking. Never thought of smoking, knew it wouldn't help anything.