The Leukemia & Lymphoma Society - Fighting Blood Cancers
11 Replies Last post: Aug 19, 2009 12:35 PM by Tex  
busymom   35 posts since
Apr 7, 2009
Currently Being Moderated

Aug 13, 2009 1:25 AM

WWYD

I finished chemo and radiation for mediastinal NHL 3 years ago.  I have had several periods of time where I have had breathing issues and have heard a variety of things from different specialists...from anxiety to pneumonitis.  I have some areas of ground glass opacities on CT that have remained stable and I'm not concerned that I am having any type of a symptom of relapse.

 

I went to Wyoming with my children this week and we were walking down (and then up) a steep area to see a waterfall at the canyon area of yellowstone.  On the way up, I literally thought I was going to die.  I know that sounds melodramatic, but I could not get enough oxygen.  I was breathing, but the oxygen seemed to not be getting to my brain or the rest of my body.  I was having terrible pain in the lung that has damage in it and was doubled over trying to breathe.  I thought my children were going to have to get help for me and I seriously wondered if this was it.  Again, melodrama aside, it was quite a shock.  My lung was burning and hurting and I was unable to get air.

 

After sitting on the trail for quite some time, I was well enough that I felt I was not going to black out and could get back up.  I could not hike anymore or engage in any more activity and the burning/pain continued.  About two hours later, every time that I exhaled I began to hear weird sounds from my lung.  They started like a gurgling rumble and within hours became...like...a ghost trapped in the base of my lung moaning or something.  <roll eyes at me...go ahead>.  This lasted for roughly 12 hours....and....ok..here is where I will sound like a total nutcase:  I recorded the sound on exhalation with my video camera several times.  This has happened to me a few times, but it has always disappeared by the time I could get a doctor's appointment.

 

It has been two days and I am finally home.  I am still having pain and burning on inhalation, but no more noise on exhalation.

 

1.  Should I go to the doctor?

2.  Would you take the audio recording in with you if you were me or does that seem crazy?  I want the doctor to be able to HEAR what I'm talking about, but I'm afraid she'll think I'm nuts for recording it.

 

 

Thanks for your advice.

 

Kris

sha_shelt   630 posts since
Apr 3, 2009
Currently Being Moderated
1. Aug 13, 2009 8:53 AM in response to: busymom
Re: WWYD

Hi Kris,

 

Sorry about your vacation not going the way it was envisioned and having such a scare.

 

The short answer to both questions is "YES!!"  You definitely have something that's not right and by recording the sounds (I would have never thought of doing that - good move!), you are giving your doctor another piece of the puzzle.  To heck with if she thinks you're nuts or not!  Hearing the actual sounds is a good diagnostic tool and if she doesn't recognize that, maybe it's time to look for a new doc.

 

Good luck sweetie - hope it something that can be fixed easily.  Keep us posted?

 

Sharon

Tex   3,869 posts since
Apr 3, 2009
Currently Being Moderated
3. Aug 13, 2009 12:49 PM in response to: busymom
Re: WWYD

One of my rules of thumb is: If you wonder if you should see the doctor, you should definitely see the doctor.  Go!  Take the videotape.  If your doc thinks you're nuts find a new one.

 

While I didn't have all the things you mentioned, I had very similar spells if I tried to walk a city block at sea level a couple of weeks before my dx.  And while I'm not saying I think there's a reason to be concerned about anything like that, I'm asying I'm taking your descriptions very seriously.  Been there, done that.

 

And for cripes sakes, stay away from place with high altitudes, no humidity and dust until you get this fixed!

 

Blessings

KyGuy   1,257 posts since
Apr 3, 2009
Currently Being Moderated
4. Aug 13, 2009 1:02 PM in response to: busymom
Re: WWYD

Absolutely.  Get to the doc and take the recording.  The high altitude may have caused it to happen.  When we were in the Grand Tetons, my wife and I got very winded hiking and we were both healthy at the time.

 

Take care,

Kelly

mamawarrior   941 posts since
Apr 3, 2009
Currently Being Moderated
5. Aug 13, 2009 1:14 PM in response to: KyGuy
Re: WWYD

I'm glad you are persuiting it kris, and great idea of taping it. Hope you get some answers.

pamd   1,347 posts since
Apr 3, 2009
Currently Being Moderated
6. Aug 16, 2009 6:25 PM in response to: mamawarrior
Re: WWYD

Did you go to the doctor and find out anything yet, Kris?

Tex   3,869 posts since
Apr 3, 2009
Currently Being Moderated
8. Aug 17, 2009 12:47 PM in response to: busymom
Re: WWYD

busymom wrote:

 

Am I alone in having those feelings about getting in to see the doctor?

Nope.  But if you're planning on being a long-term survivor, you'd better get used to it.

 

I wrote a thread about this not too long ago.  I waltz in, sit in the waiting room, wait to do my labs, etc. with my full head of hair, my somewhat normal weight, muscle mass, healthy glow and every confidence that I remain cancer free.  I spend a maximum of 10 minutes with my doc and take off.

 

And I do this all in front of a group of emaciated, bald people worried not only about their long-term future but tomorrow..  I know that when my doc's late it's because the person he's seeing is doing poorly.  Or the person before that or before that.  And there's a likely possibility that the next person he's going to see is in bad shape, as well.

 

I feel awkward about it.  I feel like I'm taking up time my doc could be dealing with someone who needs him.  But that's the rub.  I need him, too.  I need to keep an eye on things and make sure there's no relapse headed my way.  I need to know what my counts are.  I need to pay attention to my body because my SCT has long-term affects on my health and well being.

 

Yeah, I'm doing okay.  But I was once one of those people in the room who was bald and emaciated.  I was doing poorly.  I fought like a demon to get where I am just like those people are fighting today.  I'm not going to blow it.  If my doc didn't have time to see me, he'd let me know.  If there's a need to see someone STAT, my doc's have never been shy to call and reschedule.

 

You need your doctor now.  You go to that appointment tomorrow.  You hear me?

 

Blessings

pamd   1,347 posts since
Apr 3, 2009
Currently Being Moderated
9. Aug 17, 2009 9:33 PM in response to: Tex
Re: WWYD

I'm with Tex, Kris! Especially since you are going on vacation. So much better to be in town if you are ill, than out of town. I'd adopt the "better safe than sorry" theory, and just get it checked out. You'll have peace of mind on your holiday then.

Tex   3,869 posts since
Apr 3, 2009
Currently Being Moderated
11. Aug 19, 2009 12:35 PM in response to: busymom
Re: WWYD

Kris,

 

Thank you for going to the doc.  And do go to the ER if you have anything else come up.  You've put a lot into staying alive.  Don't blow it now.

 

YAY!!

 

Hope you're having a good time.

 

Blessings

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