GERD, sleep apnea, recurrent pneumonias (aspirant?)

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grannymac
Regular Member


Date Joined Dec 2007
Total Posts : 35
   Posted 5/9/2008 1:58 PM (GMT -6)   
I have had GERD for a number of years, but only realized it WAS GERD a few years ago after having major difficulty swallowing when taking Fosamax. EGD's were done, esophagus was dilated, and fosamax was stopped. This helped for a while. Then, in 2004, my nightmare began. I had a 'follow up' EGD in the fall to see how things were going, and the day after, was rushed to the hospital with severe vomiting and fever. By evening, they knew I had pneumonia, two days later, cultures showed septicemia. Two weeks later, I went home. Then...began a two year 'frequent flyer' situation - I was hospitalized 1-2 weeks/month for 8 months with pneumonia. A Bronchoscopy was done in spring of 2005, no more pneumonias for 8 months, then another one. By this time, I changed docs and hospitals. Early 2006, another bronch was done (a new pulmonologist) and I was pneumonia free for a little over a year. Then...slowly at first, pneumonias once again struck. Starting in fall of 2007, they became more frequent, and in the first few months of 2008, I had 4 bouts. I also have GERD severely, and have done everything short of sleeping standing up! I have a hospital bed - so head is up. Some of my docs say the pneumonias are aspirant, others say they aren't - go figure. However, the more I read, the more I'm convinced that my COPD (oh, forgot to mention that...), GERD and possible sleep apnea (going to set up testing for this) might be related. My guess is that I either wake up gasping, and aspirate or aspirate and then wake up (chicken or egg first question?). I know that some mornings (like this morning), I wake up choking almost to the point of not being able to breathe (I'm o2 dependent, btw, and am on 20 mg prednisone for COPD). This morning was the worst. I've been running low-grade fevers (100.x) the last few days, and have felt like h*ll :/; and have been watching that like a hawk. I did a lot of study today and have seen much literature pointing to a link between copd, gerd and recurrent pneumonias, which makes sense. Anyone here on the board have similar problems?

Gina

TammyGrl0528
Veteran Member


Date Joined Jun 2007
Total Posts : 1345
   Posted 5/9/2008 3:55 PM (GMT -6)   
Hey there Gina. Welcome aboard here to healingwell. I am glad you have found the site, and that you feel comfortable enought to post with us.

I cannot say that I have a similar problem as you. I am sorry that I cannot be of more help to you on this question.

I am glad to know you are under the care of a doctor, and I certainly think you want to take your questions to him. Maybe there is something he can suggest to you to make you more comfortable.

I hope soemone has a similar issue as you and can share their thoughts with you. I will also try to do some research later today. I can't do it now, as I am about to leave for my sons softball practice. Together, we will figure things out.

Once again, welcome aboard, and I do hope you stick with us!
 GERD Forum Moderator
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grannymac
Regular Member


Date Joined Dec 2007
Total Posts : 35
   Posted 6/7/2008 11:08 PM (GMT -6)   
FWIW, when we add replies to this forum ande any forum regarding COPD, etc., we need to make sure that those who take prednisone are aware that it can - and does - bring on diabetes. I wasn't diabetic, now I am - my readings have beenall over the map at the beginning, then they settled down - now...I've had 3-4 >700; 2-3 >500; many >200 and a handful >150. I'm on 16 units Lantus with 2 mg amaryl in the a.m., and I take my insulin not as regularly as I should (I don't EAT as regular as I should! :/).

At any rate, unless your docs have mentioned the part about prednisone raising blood sugars, I'd get 'em checked and checked well. There are two wchools...One that prednisone brings on diabetes, and one that it brings a latent version of it to fruition - I think the latter is what happened to me - I'd been told I'd had some numbers over 150 x4 back in 2004, so...

Bo Peep
Regular Member


Date Joined Jan 2008
Total Posts : 227
   Posted 6/9/2008 3:50 AM (GMT -6)   
Hi grannymac! Yes I had similar problems. Trouble swallowing due to motility issues. Gasping and choking in my sleep. Only had pneumonia the twice but felt like hell with it and it took ages to clear up! I have recently had the nissen and now no longer suffer from this! Yay! Still have the swallowing difficulties though but am hoping it will gradually get better. :-)
Elaine


grannymac
Regular Member


Date Joined Dec 2007
Total Posts : 35
   Posted 7/1/2008 1:11 AM (GMT -6)   
Well, after a couple of um...seemingly sleepless nights at a sleep study (must've gotten SOME sleep! <G>), it's found out that I have serious sleep apnea. A little research here and there has netted a few facts. GERD, sleep apnea and copd are all tied in, the fixing of one with CPAP might just fix the other two! My drs. guesses are that the pneumonias are aspirant - but then why only during the winter?? <shrugs>, yet the fact that I've been vaccinated and STILL get 'em is another plus towards the docs' leanings Oh well...At any rate, there might be a fly in the ointment. I've lived in this area for 13 years and have never had anything stolen from me, my car or my house. Go figure, the one thing that was taken (oh, my cell phone car charger was taken, but that's not life-threatening,. and they got a few coins) that could kill me was taken - the car charger for the Inogen One - a $300 item that I'll never be able to afford! Heck, I'm lucky to HAVE $300 left after bills are paid! Between the feds taking $'s out for a defunct student loan I'd had back in the 80's (dropped out of school when husband was killed - to be with kids - working on getting dispensation (disability) on this, but evertime I try, I'm back in the hospital :/), and me having to send a few dollars to a number of medical caregivers to prevent another bank garnishment(s) I have very little funds. The problem is this. They might have to swap out the Inogen One with another oxygen system that's continuous so that the CPAP will work - and until I can give them back what they gave me - including the car charger - they might be reluctant to front me a new system. Of course, the biggest danger there is that IF this works to decrease pneumonias (I've had 15-20 in the last few years), being without it longer will only add more scars to my lungs and possibly put my life in danger. If I can't get it until the car charger at my arrangements is paid off, it'll be a year before it's paid off. If anyone knows of a car charger for an inogen one floating around (NOT STOLEN), please let me know! I'm scared I won't be able to start CPAP, and I'm terrified what this might continue to do with my lungs and my life. I don't think that one mistake of not locking the car should be a death sentence...sorry for rattling...I'm scared

grannymac
Regular Member


Date Joined Dec 2007
Total Posts : 35
   Posted 7/13/2008 7:53 PM (GMT -6)   
Hi, all, again...sorry about my last post..I was having a wonderful pity party. (I guess I'd gotten a bit cynical about greed in medicine given my experiences - it doesn't help that I"m coming down from mega doses of prednisone in the hospital - would make an ogre's moods seem like a kindergarden picnic! oh well...

I even failed the cpap tests! (I really DO need to study more! <G>) I'm now on a bipap machine at night (daughter says I sleep sooner and less restless. Now, if my pneumonias stop, I'll have proof that GERD played a part - as well as the sleep apnea), which required a swap-out of my o2 machine from an Inogen to an Eclipse - a bit bigger and heavier, but gives both continuous o2 (for bipap) and demand (puffer).

It's also interesting that when looking back to my posts in May, it was only a few days after the post I made re the low-grades that I ended up back in the hospital - also, my sugar goes nuts. 36 hours before last stay, I had 5 out of 6 sugar tests over 200. I need to keep a diary to see if there's a pattern in the low-grade temps and sugars that can predict a flare coming up. hmmm....

grannymac
Regular Member


Date Joined Dec 2007
Total Posts : 35
   Posted 7/17/2008 1:42 AM (GMT -6)   
Elaine,

I'm so happy to see that things have resolved with you! You lucky thing, you! - only two pneumonias? You said "swallowing difficulties" - do you still have 'em? If so, you might be able to get your esophogus dilated - I have to have mine done at least 2x/year Don't kid around about difficulty swallowing. Someday you might choke and either get pneumonia again OR...worse.

I've had let's see 16 in 3.5 years. I'm seeing a surgeon re the Nissen next month. He was referred to me at discharge, and I found out he's a general surgeon - should I look for a GI surgeon instead? I am absolutely pleased with the care I get at the hospital I'm at, and so far, referrals have been right on the money, as it were. Given all my medical problems I'm getting more and more concerned about going through surgery, however light - o2 dependent COPD, diabetes, high blood pressure, CHF (in the past) and so on.

For the time being, we're trying even more stringently to keep my head up, not eat within 3 hours of bedtime (but I have to have a snack to keep my sugars from plummeting - so I'll have to break that rule, though if I eat a high carb snack, I won't have to eat too much), I'm on bipap due to severe sleep apnea, which can wake you up hundreds of times per night, oftentimes with short gasping or snoring - it's the gasping that can also introduce gunk into the lungs - it sits there and ultimately infects, especially if you're immune system is shot - between prednisone now, and chemo in 2001 (breast cancer survivor) my immune system is shot! The idea behind bipap is that it forces air into my lungs on inspiration AND expiration, might keep reflux from being able to rise and it's when that rises that I choke and inhale stuff into my lungs.

Hope this helps answer your questions!

Gina

grannymac
Regular Member


Date Joined Dec 2007
Total Posts : 35
   Posted 8/10/2008 5:53 AM (GMT -6)   
Well...a little update is in order. I had yet another hospital stay - end of July to 1st week of August - pneumonia again. Now, there is a controversy over whether my pneumonias ARE aspirant, because several docs this hospital stay say that aspirant pneumonia is much harder to get rid of, and mine usually clear up fast...I wake up very sick, hit the ER, get a bag of fluid, some tylenol, pain/nausea meds and within 24 hours, my fever is down, and I'm marking time until the course of iv antibiotics is finished. I've mentioned that maybe it's not truly clearing the pneumonia up, and we should look at long-term antibiotics, but...that's shot down due to danger of 'super bugs' ::sigh:: And...a new PFT shows not copd but pulmonary fibrosis...makes me feel a little less guilty 'cause there are other reasons - including GERD for it other than smoking (which I quit in 2003), but still :)

As far as GERD is concerned, we seem to have it under control with bipap at night. I'm seriously thinking of getting on the 'medical mystery program' - I don't know <G> Oh, the comment was made that I might need to think of a lung transplant (about the only 'cure' for IPF).

Gina

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 8/10/2008 5:44 PM (GMT -6)   

Hello Grannymac,

This is Kitt and I am the latest edition to the GERD/Heartburn Moderators list.  I have read back and see I am following in some fine footsteps.  Tammy is still here but has been very busy for the last 3 months so I hope you are as glad to meet me as I am you.

You have a very complicated history and it sounds like the whole pulmonary problem has pretty much ruled your life for awhile now.

I do not know where you go for your medical care and you may have this info but I will post it just in case you may like it:

National Jewish Medical and Research Center has been named the best respiratory hospital in the nation by U.S. News & World Report.

National Jewish Health Main Campus
1400 Jackson Street
Denver, Colorado 80206  
Here is the rest of this list

#2 Mayo Clinic, Rochester, Minn.
#3 Johns Hopkins Hospital, Baltimore
#4 Massachusetts General Hospital, Boston
#5 Cleveland Clinic
#6 Barnes-Jewish Hospital/Washington University, St. Louis
#7 University of Colorado Hospital, Denver
#8 University of California, San Diego Medical Center
#9 University of California, San Francisco Medical Cente
#10 Duke University Medical Center, Durham, N.C.

I am glad the Bipap is working for you.

Patients who are treated with BiPAP therapy have been found to have breathing disorders beyond sleep apnea. It does appear you physicians have created a good plan of care for you. :)

Keep us posted on how you are doing and I look forward to your posts.

Sincerely

Kitt

 


 

Kitt, Moderator: Anxiety/Panic & Depression
& GERD  Forums
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It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
Clickable Link: Anxiety-Panic Resources


grannymac
Regular Member


Date Joined Dec 2007
Total Posts : 35
   Posted 8/23/2008 3:58 AM (GMT -6)   
Kitt,

Thanks for your reply! and thanks for the welcome! And...I am indeed glad to meet you!

I live in the Detroit metro area, so get my care with Beaumont Hospital, and will go to the University of Michigan (probably) for the transplant, if indeed that's in the cards. The two tests I had to firm up the dx are still out (my doc was out of the office today) so I'll know next week. It's the waiting that's hard...and it's hard to wrap my mind around having a diseased that has a 2-3 year survival! Even with breast cancer, I had a 95% survival rate! Even if the dx turns out to be IPF, it'll be a relief to have something pinned down so we can go forward with this. See, this whole thing started back in 2004, and I've been fighting to get an answer to what's been happening to me with all the pneumonias, and so on, and no one knew. I heard that IPF can mimic COPD at the early stages, so that's what I've been treated for. It was only in this last year when the numbers on the PFT plummeted and shifted from obstructive to restrictive (IPF is restrictive) and the PFT stated "severe restrictive disease..." that we knew it might not be COPD that we're dealing with - apparently, there was no other hint. I'd have to look back at the other PFT's to make sure.

"Gastroesophageal reflex disease (GERD), pulmonary arterial hypertension (PAH), depression, and
sleep apnea are among the most common conditions associated with IPF. " I've seen this over and over during my research - makes sense, given the corrosive effect of stomach contents on the lungs, and the potential of small amounts of aspiration of stuff during gasping when waking up with sleep apnea, I also had radiation on my right breast for cancer - another correlation.

I might consider Denver (National Jewish) as a 2nd opinion, provided I can get one of those Angel flights or whatever out there - it'd be impossible to fly out there money-wise. Actually, U of Mich is part of NIH's IPFNet, so they probably work together with all the other institutions in the 'net to discuss stuff (much like a tumor board at cancer centers?)...I don't know, but I'm guessing.
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