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Not so good news...

elvan
Member
2 81 705

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
Giulia
Member

Sleep helps heal.  Glad you're getting some.

SMILINACCOUNTNT

I'm so sorry to read all this. I will keep you in my prayers

Rachy2283
Member

prayers going up elvan‌.  Praying you will be able to breathe it is a scary thing.  I'm so sad about you're report and pain and all but hopeful they can help sis.  We will be praying for ya. Sending our love.  

Rach n fam.ppl

elvan
Member

Thank you smiling_accountant‌, l really appreciate that.

Ellen

elvan
Member

Rachy2283‌ It is definitely worrisome but all of the prayers going up really help. Thank you so much.

Ellen

Rachy2283
Member

 Yes they do.  I know it to be True,. Hubs hasn't been able to breathe well lately and is in a lot of pain and sleeping to get through as well.  I guess as the caregiver who can not provide relief... It is very sad but God is still on the the THRONE. He is my Hope and the Lifter of mine head. He will help us and carry us when we are weary.  I am so thankful for the Lord in my hard times.  Atleast we have a Friend that is closer than a brother. We can always chat and pray.

CrazyQuitter
Member

How are you holding up now, elvan‌ ? I have been worried about you!

elvan
Member

CrazyQuitter‌ l am doing alright, slept a LOT last week, there is nothing else l can do at this point. The pain has let up quite a bit, no idea why. Pain appointment was rescheduled for Mar, they want an MRI of my spine to assess fractures, where they are located & how many there are. 
Thanks for thinking of me.

Ellen

Giulia
Member

Glad the pain has ebbed.  Prayers don't ebb though.  

Strudel
Member

Prayers and good vibes continue Ellen! 

elvan
Member

Giulia‌ rough evening, not sure why. Pain management rescheduled Mar 23rd, have to have MRI to see fractures...appointment is Mar 16th. I NEED those prayers...BAD!

Thanks, G.

Ellen

elvan
Member

Strudel‌ Thank you...really need them.

Ellen

Giulia
Member

Yes, it's the "not sure why" that is the pain!  lol  If we could see a "reason" it would help so much.  Gee, March 16th is such a long way away.  Sorry.  Meanwhile our choice is.... well the way I look at it for me is "suck it up and just deal with it as best I can."  Unless we can live at the doctors' office...(and who wants to do THAT!) we just suffer through.  And sometimes the pain DOES go away.  And then I think "Well, I coulda just waited another week...or two..."  But then sometimes - because we're "not sure why" waiting another week is the worst thing we could do.  Life's a trip, ain't it?!  

elvan
Member

Giulia‌ It is indeed.

YoungAtHeart
Member

Talk to ME about putting off calling/going to a doctor.  if I had waited about another hour, my scar tissue bowel blockage would have killed me.  And because I waited, I had to have the surgery performed by the on-call surgeon at a community hospital in the middle of the night and what the blockage didn't do to me HIS skill and decision making almost did. I was too sick by the time I got help to move me to either of the first class institutions in my city.    Hope I have learned THAT lesson.

Hope you will learn from it, too, Giulia !

Giulia
Member

I think I HAVE.  That's why I wrote what I did to Ellen.  It was an acknowledgement of that thinking.

YoungAtHeart
Member

 Giulia     ♥

Glad you are learning it sooner than I did!!!

DavesTime
Member

Ellen, I don't know why I am just seeing this, but I can only imagine how scary that must be--not just about the suspect nodule, but the whole experience you are having this week.  Hope your pain is easing off a bit and that you are breathing a bit easier. Keeping you in my prayers!

elvan
Member

DavesTime‌. Thank you so much. Yeah, it’s really scary, the repeat scan is scheduled, l have to have an MRI before the pain specialist will see me, that is going to be March 23rd. Pain is intermittent now so that is an improvement. Thanks for the prayers.

Ellen

Rachy2283
Member

Praying for you today elvan‌.. I keep randomly thinking of you throughout my days so I have been taking it as a cue the Lord wanted me to pray.  Love ya sis and I hope u have a great day today, and the weather is as lovely there as it is here. . Take care and just know we are praying for you sis.

Rach

ash2lar
Member

OMG Ellen, I've thought of you often but have not been on the website for months..So sorry to hear about what is going on with you currently! The rib pain alone is awful! Do you have adequate pain control? How about a mask for your oxygen? Sending positive energy and healing thoughts your way..

elvan
Member

Rachy2283‌ Thank you so much, l cannot begin to tell you how grateful l am for the thoughts AND the prayers.

Ellen

elvan
Member

ash2lar‌ Thank you so much for your thoughts. The pain is sometimes controlled & then other times, it is completely unmanageable. I am supposed to see a pain management specialist who is currently demanding an MRI of my spine to determine how many acute fractures l have. I am negotiating for sedation so l can tolerate an MRI. I am so intensely claustrophobic that l will not have the test without medication. I would have such a severe panic attack that l could not handle it. There were findings on the CT scan that l was not told about when the report was apparently edited so the doctor could cherry pick what he wanted to share with me. I received a printed copy of the complete report & l was quite surprised at some of the findings. I feel like an old car that has so many issues that it is not WORTH rebuilding. Sorry that sounds negative. I am not sure this concentrator can function with a mask instead of nasal cannula. That would have been the obvious solution. I have to check & see if it is a possibility. This is all pretty overwhelming, as you might imagine.

l hope you are doing well & that your absence from the site is because you are happy & healthy & busy. Thinking of you, thanks for checking in.

Ellen

Barbscloud
Member

elvan Ellen, if you can get a Wide Bore MRI, it really helps.  I still can't say I'm crazy about it, but it is much easier.  
I was able to get the COVID vaccine yesterday.  I lucked out and got an appointment the day before.  It's like winning the lottery!

Barb

ruesella
Member

Ellen, sending you love and light. You continue to be such an inspiration to me. Please let me know if a hand-knit blanket or scarf would be helpful; there aren't many things I can do from afar, but I would love to send you a bit of warmth infused with real hugs. ❤️

elvan
Member

Barbscloud‌ WOW, good for you. My son checks several times a day for places to get vaccine & so far, they are way out of our area. There is no way l can lay on my back for an hour without feeling like l am suffocating. Wearing a MASK makes me incontinent because of panic. Sorry if that was TMI.

elvan
Member

ruesella‌ How incredibly sweet of you. Thank you so much for the offer. Made me tear up in a good way. I get very discouraged, this has been a particularly challenging time.Ellen

Augustus44
Member

You obviously don't need to hear from me, since so many people genuinely love you. I just wanted you to know that I am thinking about you, and offering up a prayer which I hope gets heard--my problem is my prayers don't go up as high as yours do. Anyway, I'm hoping that you are getting some needed sleep, and that you are in no pain. You are too fine a human being to be suffering from anything--everyone is right there with you--never feel alone. 

elvan
Member

Augustus44‌ l beg to differ with you, of COURSE l need to hear from you, l need all if the support & prayers that have been so generously offered. I am in great pain most of the time but the breathing is terrifying. I know l am not alone, thank God. Whatever happens is out of my hands now. All l can do is to try to take the best possible care of this body that l can, if l had started earlier, it would not be like this, if l can reach ONE person & help them to stop, l will be a success. I will smile my biggest & most sincere smile. Thank you for reaching out & never think your prayers are less than anyone else’s. Best to you, stick with your quit!

Ellen

marciem
Member

I'm just jumping in to say, dearest elvan‌... prayers are with you for easing of your pain!!

IF, and only IF, your nodule turns out to be not "nothin" but something.... well in my case (small lung cancer detected on LDCT) , the mixed blessing was that I was not a candidate for surgery (i.e. the "gold standard" of lung cancer treatment) because of severe COPD, and I'm sure you'd fit in this category as well... and to ME the mixed blessing is that SABR (stereotactic ablative radiation... fancy-schmanzy linear accelerator-type treatment) is painless, quick, virtually no recovery time, and the stats on it (such as they are, not a lot of numbers to crunch) are as good as surgical intervention.  Be sure to ask your pulmonologist about this if the next CT shows growth.  I'm 4 years post treatment with no signs of regrowth or new tumors... just waxing/waning COPD nodules.

And of course, early detection is the KEY, and that's where you are

hugs to you!

elvan
Member

marciem‌ Thank you so much for that information.  The radiology report says there is a 5-15% chance that it is an early malignancy.  I didn't expect to be a candidate for surgery, I appreciate this information and will keep it handy for when I go back to the doctor.  Next CT is in May, appointment with pulmonologist is not until June.  One way or another, will get through this.

Ellen

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.