Still having some breathing problems...

[Mike From Michigan]

Well, it is now 4 1/2 weeks since my AVR surgery and I am still having bouts with those pesky breathing problems. What happens is that my breathing becomes shallow and rapid without me doing anything - it just hits me seemingly at random. When it really hits it becomes very difficult for me to speak as I can only get one word out at a time, then must concentrate to take a deep breath, then speak a word or 2 more. The good news is that it is SLOWLY subsiding day by day. To relieve this condition I must lay flat, relax and concentrate on deep, slow breathing. Taking a Ricola cough drop also seems to help.

What baffles the Drs. is that exercise does not bring this condition on and I have no problems while sleeping. I just saw a lung Dr. yesterday (who previously had me try inhalers and cough medicines to no avail) and he said he's never seen anything like it. If it was still irritation from all the tubes jammed down my throat during surgery I would have a sore throat or hoarseness, which I do not. My chest x-rays look fine and my lungs are clear. The last test he will give me is a chest CT on Thursday. He even hinted that it could be psychosymatic (sp.) or from anxiety. I guess I'll just have to wait to see if the CT scan yields anything. If it is indeed "all in my mind", then maybe I just need to see a hypnotist, screw the Drs.!!

However, whatever it is, when it goes away I'll be feeling prety good otherwise. My sternum pain is 90% gone and the sweats/chills have subsided to a tolerable level. It is still difficult to fall asleep at night without sleeping aids though, even though I am trying to break the habit. My big weight loss has also stopped - I am now the proverbial 98# weakling; you would never know that I used to be big into weight training. I am also doing well on the treadmill so maybe my new physique will be that of a long distance runner...

On the plus side, I also saw my cardiologist yesterday and he said everything sounded great and my scar is healing nicely. Just to be sure everything is OK I will have a MRI next week to take a close look at everything. A good test result from that will really put me at ease to know that there are no hidden problems (maybe it will also cure my breathing problem!). I think I share the same fear we all have after surgery that they will find some problems, requiring a quick re-surgery. No thank you - I still have nightmares about those 6 horrible days in the ICU. Give me a few years and those bad memories will be gone - they are already fading now luckily... I'll just try to think positive...

 

[tobagotwo]

Mike, there are threads about breathing issues not dissimilar to the one you describe. Usually, it is a sudden, deep breath or gasp, rather than a series of shallow breaths, but I would not be surprised to find them opposite sides of the same coin.

I know I caught myself breathing shallowly sometimes, and deliberately changed the tempo and depth. Although I never had any breathlessness from it, maybe I just became aware of it sooner in the cycle.

Granted, the type of breathing you describe can be associated with a panic response, and you have certainly been through enough to earn a little panic now and again.

Causation associated with the sudden gasp has never been established, but of course, we all blame the breathing machine. After all, it is a post-op phenomenon.

Best wishes,

 

[Ross]

I'd like to take the words "psychosymatic (sp.) or from anxiety" and shove them straight up someones *ss. They've tried that game with me for years and things are showing up that they never saw before, but yet I'm crazy for the feelings I have. Screw them!

 

[Bryan B]

Ross

Ross

I have a great suggestion on where you could shove those words. You would have to travel to Centennial Medical Center in Nashville, take the elevator to the 5th floor, and do a u-turn and you would be at my PCP's office. I won't name names, but he could use a good "shove". All of his "psychosomatic and anxiety" diagnoses have resulted in endocarditis and OHS. After proving him wrong on multiple occasions he has the balls (excuse my french) to question my current sternum problems. I'm at the point where if it turns out that there is something "real" causing my pain I might turn into his (or anyone else who has used "anxiety" as an excuse to discount my past or current physical problems) worse nightmare.

Sorry, ya touched a sensitive nerve there bud ...had to vent.

Regards,

Bryan

 

[Mike From Michigan]

It's all in our minds...

It's all in our minds...

I guess when all else fails to yield a plausible medical explanation, the response they teach in med. school to tell the patient is "maybe it's all in your mind"...

However, I DO wish my heavily calcified, stenotic aortic valve and dilated aorta was all in my mind, then they wouldn't have had to operate...

Bob H.: Yes, I also get the involuntary sudden deep gasps, but they are unrelated to the breathing problem (at least in my mind... )

 

[Ross]

Sorry, ya touched a sensitive nerve there bud ...had to vent.

Regards,

Bryan

You mean you can't tell it touched one in me? Guess I better go get my injection of Ativan since it's all in my mind.

 

[ALCapshaw2]

Hello Mike,

I had some shallow breathing problems shortly after my AVR. After several trips to my PCP and ER, my Cardio finally figured out that my chest cavity was inflamed from the chest tubes and one lung was still not full inflated. He prescribed an anti-inflamitory drug (on top of my Coumadin) which I took for a week, just long enough for things to begin to heal and get me back on the road to recovery. There might be a connection, although our symptoms were not exactly the same.

Do you have a cough? Are you taking an ACE inhibitor such as Zestril or something similar? Coughing out your words is a side effect of those drugs.

'AL'

 

[Harpoon]

Mike, if it's improving you might try doing some stretches to help it along...


Sit in a chair with your back straight and your arms resting at your sides.
Now bring your arms up, out from your sides to shoulder level so you're the shape of a "t" then bring your arms up over your head, placing the right hand over the left, palms up. Inhale as you do this, slower the better.

Hold that a moment then turn your palms in towards your head, interlocking the fingers and bring your arms down, held straight out so you see your hands pass at arms length in front of your face down to your waist, cuping them as if you were holding a something small. exhale as you do this, slower the better....

Hold that then pull your hands up to your collarbone, inhaling as you go. Hold your breath as you turn your hands so your palms face out from you and push them up towards the sky again, still keeping fingers interlaced.

Bring them back down as you did before, exhaling as you go and turn your hands out again as before but push them out in front of you and bend at the waist so you end up touching the floor with your hands, if you can.

Inhale as you come back up and try doing the whole thing again.


I modified this basic Qigong (pronounced "chi kong") movement from what I've learned under my kung fu teacher.

There's a lot more to it from the last section, though it really involves standing up the whole time and the leg motions take some practice to get right.

The idea is to expand the chest cavity, increasing lung capacity. It allows more oxygen to come into your lungs and helps breathing a lot but it's not recommended for people with a LOT of breathing difficulties unless you can do it very basically and have permission from your doctors.


I try to do it as often as I can and it really does help. I feel a lot better and more "limber" too after doing it, the arm movements are a GREAT stretch.

Qigong literally means "energy breathing" and the idea, as is Chinese thinking, is to help expel the bad Qi (energy) and pull collect more good Qi.

If you don't believe in the Qi part, just think of how much more oxygen you're pulling in and such.

Granted, it's probably NOT a good idea to try this around people who smoke... =)


There are all kinds of variations on Qigong out there. My mother took a class in some form or other and she got a book on it that she gave to me to read.

A lot like Tai Chi.

 

[atydev]

mike

mike

I am glad to know I am not crazy. I to have had this problem. My biggest complaint though about my breathing is the sudden gasping for air. I thought I was just silly and wanted to ask my doctor about it but thought she would not believe me. I am also 4 weeks post op. Mine started about 2 weeks ago. At least that I can remember. Thanks for reassuring me that if I am crazy I have company....thanks for being there with me least now I know we are hanging out in la la land together.

 

[JimL]

Happy Birthday, Mike. I wish you good breathing today.

 

[tobagotwo]

Bryan, if you're still not receiving active treatment for that non-healing sternum, go to an orthopedic doctor. Then, when it's fixed, go back and sue the manure out of that rectal opening of a PCP.

You can't be the only patient this imbecile is mishandling. He needs a wake-up call. You're losing work time and good living time. Sounds like a win-win for everyone to me.

I'm not a litiginous sort, but when you think about the next person, it sometimes seems that just walking away is not enough.

In keeping with subject of the thread, I am suggesting this to Bryan so that we can all breathe a little easier when we go to a new doctor...

Best wishes,

 

[Lois Lane]

Breathing

Breathing

Mike -
Ditto Harpoon on the Qigong - call the library try "The Way of Qigong The Art and Science of Chinese Energy Healing" by Ken Cohen. He is based in Colorado and also has videos - the breathing work is very helpful - improves your physical condition and your blood counts - at least in my experience.

Oh, and happy birthday....

 

[Mary]

Happy Birthday!

Happy Birthday!

Jim L wished you good breathing today for your birthday, so I will chime in and do the same.
Enjoy!
Mary

 

[ALCapshaw2]

Hello, Brian?

Anybody Home?

It's time to find a NEW PCP !

Secondly, what does your SURGEON say about your ongoing sternum problems? Have you seen him?
I know it involves a long trip, but it might be worth it.
Alternatively, maybe he could recommend someone
closer to home.

'AL'

 

[Bryan B]

Firstly, happy B-Day Mike!!!

Al, I flew to NC a week and a half ago and saw my surgeon on the 12th (BTW I'm still in NC). After examining me he said that he didn't think it was a non-union of my sternum, but he was able to locate a "hot spot" which he thinks is a wire. My PCP located this same "hot spot" (which I told him I thought was a wire), but he diagnoised it as costochronditis. They did a CT scan (this was 9 weeks post-op) and it supposedly showed no abnormalites other than my sternum was not completely healed. I brought the CT results with me but the surgeon said that they were useless taken at 9 weeks out. I have a MRI scheduled for tomorrow morning to rule out non-union and check the wires.

I had started rehab at 7 weeks out. I was feeling great and had no "unusual" sternum pain until 8 weeks out after starting chest excercises in rehab. I was suddenly struggling badly at rehab and they asked me to see my doctor. He took me out of rehab and told me not to do any vigorus aerobic exercising until the pain subsided. Well it never did...to this day...18 weeks out today. My employer won't let me go back to work until all lifting restrictions are removed. My surgeon said that if the MRI comes back negative for non-union he would write me a release for that. That's great as far as work goes but does little for my quality of life. Me and my surgeon discussed the wire and he seemed reluctant to recommend removing it due to the "risks" of additional surgery. He did say I had inflammation at and around that "hot spot". I WANT IT OUT!!! I don't want to "deal" with the pain unless I have to. I don't want to live my life where every time I take a walk, lift something, play golf, etc. I have to pay the price afterward...unless there is nothing that can be done about it.

As for my PCP you are right Al, I should have "run away screaming" after he diagnoised me with serum sickness when I was exhibiting acute symptoms of endocarditis AND had a DOCUMENTED history of congenital VSD and AI. But I didn't. However I did demand the echo that found the vegetation, and I did demand the cardiology consult (that he said was unnecessary) in which surgery was recommended. I have stuck with him because I have been sick, or recovering from being sick since June of 03. I was kind of waiting for a lull in the action before checking out my options, but there has been no lull.

Whew...I think I need to take a few deep breaths after that tirade! Now you can see why I haven't been posting much lately.

To get this back on topic, I experienced some weird breathing patterns for several weeks after surgery. I called them "catch-up" breaths, and they were involuntary. They went away around week 3 or 4 post-op.

 

[ALCapshaw2]

Brian,

Do you have a Cardiologist in Nashville?

If so, see if he will refer you to another PCP, preferably someone who specializes in Internal Medicine, especially if he/she has a 'special interest' in Cardiology.

Alternatively, ask anybody / everybody you know (other Doctors, Nurses, Dentist, etc, or even friends and co-workers, or company nurse) if they know of a good Internist who is taking patients.

Good Luck in your search.... and with the sternum 'issue'.

'AL'

 

[tiggerangelgirl]

i also had breathing problems,surgery may 19th

i also had breathing problems,surgery may 19th

I had surgery may 19th ,and was doing great at first and then two weeks out I started to feel a little short of breath and I thought some muscle pain,it took me 1 more week to finally tell the dr I could not deal with it,and although I had xrays that week before when i started to feel bad,they were negative and then my symptoms changed I was really wheezy/gurgly and had a terrible nagging cough ,it sounded like I had pnemonia,i went to my pulmonoligist and he just prescribed antibiotics,withen 3 days i could not talk or take a few steps without feeling like someone had taken the air out of me,i finally had another xray done and this time it showed a huge amount of fluid in my lung and it was partially collapsed. The cure was to have it drained a few times and although it was a painfull procedure it was worth being able to breathe again.
I am now a little over 2 months post op and my breathing is becoming better,im completly off the O2,although i still had a few days this week i was pretty sob,i found it was due to some extra fluid and began taking my fluid pill and it really helped. I just wanted to let you know that even though I had this set back time has helped ,I know that Iam getting alot better and my energy level is coming back so im just taking it slow and listening to my body ,dont overdue anything its not worth it and pay attention to your symptoms. God Bless and take care

 

[ALCapshaw2]

Hello Nicolle,

I'm glad to hear you are off the O2.
That is a good sign.

Yes, maintaining proper fluid balance is tricky.
My PCP recommended keeping a chart of my daily weight,
taken every morning before breakfast with little or no clothing.

Whenever my weight is up 3 lbs or more, I take my diuretic and potassium supplement.

That protocol keeps me from getting Short of Breath 'most of the time'.

It sounds like you've come a long way from where you started. Keep on Keepin' on!

'AL'