What stimulates your coughing?

[Terese Tuohey]

Brenda,

I would be concerned about that cough. I don’t know if Lasix has anything to do with it. My first symptoms of a PE were a dry cough and pain in my back. I thought it was from my asthma. Testing with X-ray showed nothing really unusual, but my asthma meds did nothing for this cough. Next step was an MRI. Yep, the PE showed up and I was in the hospital pronto. Please don’t ignore this cough. Have it checked out.

[jen-cueva]

Hi @Terese Tuohey, I agree this is something that @brenda-denzler should have checked out. Thanks for sharing your experience. Are you still in Florida?

[brenda-denzler]

Terese, I just had an MRI of my thoracic spine, and they didn’t note anything in the lung area (assuming they bothered to look)! I did get checked today at urgent care and no COVID, RSV or flu. I was around my grandson on Monday and he had a fever and a cough, so I’m guessing I picked this up from him.

After my first experience with having a PE that didn’t show up on CT scan, even with contrast, I am reluctant to keep asking about that unless I have symptoms as extreme as I did when the PE happened (and got ignored). Perhaps I should push it, but I’m just tired of the whole health mess and afraid of getting more dismissive comments from doctors written into my chart. When I’m on death’s door, perhaps the doctors will listen and see what I’m talking about, then.

[DebLynn51]

It seems anything and everything sets it off. I’ve had a productive, chronic cough for years. Very thick, clear mucus; very hard to get up. Strong scents will set it off and it seems everything is scented these days, even trash bags! I have tried several meds to control post-nasal drip, but nothing seems to help.

[jen-cueva]

Hi @DebLynn51, Does increasing your water intake help with the phlegm? It helps me make the phlegm thinner, and I can cough it up. I can also take some plain Mucinex and generic plain Claritin( loratadine). Always check with your PH team before adding any extra meds since we are all different. I know that a nagging cough and post-nasal drip can be annoying.

[jen-cueva]

Hi @brenda-denzler, I’m concerned about your cough and the fact that Lasix helped decrease the extra fluid in your body. While reducing excess fluid often helps decrease coughing, I’m worried that these incidents could be signs of a pulmonary embolism (PE) or new changes in your heart.

Many factors can increase coughing for me, especially after experiencing rough days with extra fluid, hospitalizations, and the like. Could you clarify if your cough occurs only when you’re active or always, even when resting? Additionally, your chest pressure is another symptom that concerns me. Have you reached out to any of your healthcare providers for help?

[brenda-denzler]

I’m going in to talk to James Ford tomorrow,and I will mention these things to him. I doubt he will take any of it very seriously, but I”ll give it a good run up the flagpole. 🙂

[jen-cueva]

Hi @brenda-denzler, I understand that dealing with healthcare providers can be frustrating, especially with your past. I’m sorry for the challenges you’ve faced. It shouldn’t be this way, and your feelings are valid. I can imagine it’s been tough feeling dismissed for so long. I’m relieved you tested negative for viruses.
I’m sending you positive thoughts and prayers for a speedy resolution. Let me know if Dr. Ford responds with concern. Thanks for sharing and please do keep us posted, my PHriend!🤗

[brenda-denzler]

Hey, Jen. I saw Dr. Ford today and it went well. I’m still coughing up half a lung because of the bug I caught from my grandson, so I’ll make this short and sweet:

(1) I should NOT drink half the bottle of codeine and guiafenasen cough syrup to try to control this cough. I am sorely tempted, and if it weren’t for the fear that the codeine would further suppress my breathing, I’d give it a try. But I know better than that.

(2) He said accumulating abdominal fluid one day after having exerted myself with work the previous day suggests that I’m not getting enough oxygen when I’m asleep, which can cause abdominal fluid buildup overnight.

(3) He’s getting the referral ready again for O2 at night for me.

(4) We talked about CPAP if O2 doesn’t do the job well enough. He will back me getting nasal pillows, if so, and not starting with a full mask.

(5) We have a six-month follow-up scheduled.

<cough> <hack>

Brenda

[jen-cueva]

Hi @brenda-denzler, It sounds positive that Dr. Ford listened and didn’t dismiss your symptoms. What a weekly win! Let’s get rid of that cough, and certainly don’t down that bottle, my PHriend! Yep, codeine does suppress our respiratory system. My doctors only allow plain Robitussin, Desylm, or Tessalon for uncontrolled coughs.

Abdominal fluid, for me, is the worst area to retain it! I fill up and then can’t eat, and that all spirals downhill from there.

I’m grateful he is back to checking into your oxygen at night. Manny uses his nasal pillow, and while he would not use a mask, a cannula wouldn’t offer him the best percentage of oxygen at night. So, please keep us posted, rest, and get rid of that cough, thanks to your grandson. 😉It’s challenging when you’re around kids. It never failed when my nieces and nephew were younger that I would catch some virus every time I was with them on holidays, weekends, etc.

🤗Take care, and thanks so much for sharing a bit of positive news to end this long week, Brenda! Resting this weekend should be your plan, right?

[Cindy Bee]

I have hd a dry cough since I was first diagnosed in 2012. Usually, small particles of food such as hamburger meat for example will trigger my cough. There are many other triggers but small food particles seem to be the worst. It gets aggravating at times, but it is something I have learned to live with.

Cindy

[jen-cueva]

Hi, @Cindy Bee. I’m sorry you have trouble with small food particles. Does taking smaller bites or washing each bite down help at all? I’m a slow eater and eat smaller meals throughout the day, like a toddler. It seems to work best for me.

[DeLois Tweedy]

I too have a cough, but not real frequently though chronic. My doctors call it a cardiac cough, as in my case I think it comes from my HF. However, with the PH as well, my issues are so closely linked I guess it’s hard to tell which one caused problems first – as many of the symptoms overlap. In my case my understanding is “when the heart can’t keep up with the body’s demands, causing blood to back up into the lungs, coughing is the body’s natural response to this airway blockage.” This is the explanation I have been given personally. Not everyone is the same and should have it checked out.

I do tend to wheeze and cough alot when extra fluid is present. I take lasix daily, but in last 2 weeks have had to increase the amount. For some reason I am retaining excess fluid, wheezing has increased and feet and ankles swell daily; all this in turn causes increased shortness of breath (of course). I am sch for an echo and cardiologist f/u in couple of weeks, at which time I have lots of questions concerning this increase in fluid and the difficulty getting rid of it.

My cough can be dry or wet. Usually I produce a small amt of phlegm if I am wheezing as well. I attribute this to excess fluid buildup which is usually happening with a wet cough. When I have a dry hacking cough, I usually just think it’s coming from my heart pumping poorly and the mitral valve unable to do its job sufficently.

We sure have some complicated issues to deal with! Brenda, please pursue this until you feel your questions are answered. Remember we are our best advocate, and sometimes our only one.

[brenda-denzler]

Jen, rest is in my weekend plans for Saturday, as it’s supposed to be rainy all day. Not much I can do outside. I may try to paint the bathroom a little, but that’s about it. Hope you have had a great week, too.

[V.R. Peterson]

Be careful of the paint fumes, which could irritate your throat or lungs, which could make the cough worse. Do you have any surgical masks left over from the days of mask mandates? If you’ve got a mask that uses P100 filter cartridges, that would work even better to keep the paint fumes out of your lungs. P100 will filter anything except radiation fallout.

Wishing you lots of rest and frequent breaks from whatever chores you have planned.

[Roger Bliss]

Brenda,

I just got out of the hospital and had a bad cough like you. Mine was caused by an organism called Moraxella. If you look it up you will find it is common in children, but rare in adults. Doctors don’t usually look for it. Mine was found with a spit test. Not all antibiotics work on it. They gave me levofloxacin to kill it.

They gave me a gadget where you blow into it 10 times and it rattles your lungs loosen up mucus so you can spit it out. Works well for me. I don’t know the technical name for it, but the brand name is Aerobika. Google that name to get all kinds of info on it.

I am not saying this will work for you, but you should ask your doctor about this stuff.

[V.R. Peterson]

It’s called a spirometer. After my son’s PTE surgery, he was given one to keep phlegm from settling in his lungs.

[Roger Bliss]

Thanks……now I know!!!!

[jen-cueva]

Hi, @Roger Bliss; wait, were you at the same hospital at the same time? I went in the week before last and returned home last Monday. I was at UCSD La Jolla. Were you there, too? So crazy! I hope you are feeling much better by now and back with Mary Ellen.

So jealous, I didn’t get a spirometry while I was there. Hehe.😉 I’ve had many through the years.

[Roger Bliss]

Yes I was in Thornton Hospital from March 4th to 7th. Got EXCELLENT care there. ME was there with me. She had to interpret what everyone was saying as my hearing aids were “in the shop” being fixed. That was pretty stressful on both of us. Was real tough when people came by when she wasn’t there.

I came out of there feeling better than I have in years. I am able to do lots of stuff I couldn’t do before.

I didn’t know you were in the hospital too. Hope everything went well for you too!!!

[jen-cueva]

OMG, wow, I was discharged on the 4th. I went in on the 27th! However, I was in the ER overflow area for a few days, then on the 3rd floor until my discharge. We just missed one another, so wild!

But I’m grateful you are feeling much better; excellent care goes a long way! I hope you and Mary Ellen are both doing well after that. Oh, and I bet it was difficult without your hearing aids, and she was not there. Did they try to use a notebook or anything else to communicate?

Thanks for sharing! Enjoy the rest of your month, hopefully with no lots of appointments! @Roger Bliss

[Roger Bliss]

So how are you doing after your hospital stay???

I was in the overflow for 2 nights, then moved to the second floor.

[jen-cueva]

Hi @Roger Bliss, I’m recovering well at home, thanks. It’s been a long few weeks for me, too. But I was so weak from being in bed that I could only stand on my hand for the last few days. I’ll share more about this in a column within the upcoming weeks.

Now, at home, I am able to walk with my oxygen short distances. Not back to my baseline, but getting there, thanks for asking. So crazy that we just missed one another. I’m happy we are both past that and doing better.

[Roger Bliss]

Take care of yourself and I hope you get better soon.

I was in stall 3 in the overflow. String beans and carrots were the only vegetable they had….lunch and dinner. I haven’t eaten either one since I got out.😉

[jen-cueva]

Hi @Roger Bliss, I can’t recall which “stall” I was in. But it was the one by the back side of the windows. I was behind the main charge nurse and that whiteboard.

OMG, so true; I swore to Manny they must have tons of those carrots. I didn’t eat much there unless Manny brought me soup or something from the cafe. None of those veggies have been eaten either since I got home. Hehe.

Thanks, buddy. I am slowly getting there but in a better place than when I went in. I’m grateful we are past that stage, but it’s still crazy that we just missed one another.

Enjoy the weekend in AZ.

[jen-cueva]

Oh no, @brenda-denzler , did you paint? I’m with @V.R. Peterson and worry about paint fumes. That doesn’t sound like rest to me. Hopefully, you were careful or maybe waited for this task.

[brenda-denzler]

Roger, I’ll ask about that if this doesn’t resolve. But I can’t take a fluoroquinolone to fight it. I have had severe pain reactions to taking one in the past, and I am not looking to repeat that! Fortunately, I am slowly getting better. I think.

I didn’t paint over the weekend. I was doing my best just to not pass out from coughing so much or burst a blood vessel from the force. Saturday night I began running a mild fever and my O2 sat went to 89%. It’s never gone that low when I was awake before. And this was before bedtime. So I decided I needed to go to the ER and get checked for pneumonia. Nope. No pneumonia. So….

I’ve been pumping every possible drug into my system — OTC and one prescription cough med. And today I bought some astragalus to take (an immune-enhancing herb; anti-viral properties). I’ve got pau d-arco on the way from Amazon. If modern medicine can’t do anything to help me, I’ll have to figure it out myself! I’ve cleared my calendar for the week, planning on resting mostly and doing only what MUST be done, or what I feel capable of doing.

What bothers me about all of this is that my O2 is still sitting on 90% to 91 or 92. Up until now, it’s been sitting at 92% or 93 or 94. I’ve got a message in to my pulmonologist about this. We’ll see if he has anything to suggest.

[Roger Bliss]

Brenda,

Ask if you can do a spit test. They analyzed my phlegm to see what was causing my problems. You may have something different??? My O2 was around 88 when I first got up. Once I got moving it would never get past 95. Now it’s back in the high 90’s all the time. I hope you can get this resolved and start feeling better.

[brenda-denzler]

Roger, nice to find someone else whose O2 goes UP (usually) when I move around, but down when I’m sitting or sleeping. I get the impression that doctors expect O2 to go down when you move around and increase demand, but for me it’s the opposite. O2 goes up when I increase demand.

[Roger Bliss]

Brenda,

Most all of my stuff works backwards and it makes diagnosing my problems hard on doctors. Now that some have finally figured it out, I am feeling better.

[jen-cueva]

OMG, @brenda-denzler, I hate that things continue to progress and not improve for you. Negative for all tests so far; it must be frustrating. Hopefully, the natural treatments will offer you some relief. Is this Dr. Ford you are waiting on? I thought they were going to help with your oxygen. Did they not help yet?

Yeah, if you cough up anything, as Roger suggested, maybe they can do a sputum test.

I’m sorry and hate that you’re feeling so bad, Brenda. I know for you to clear your weekly calendar, you’re feeling like crap! I am sending you positibe thoughts and prayers that you can get some much needed relief soon. 🤗

[brenda-denzler]

Jen, I am slowly getting better. This has really taken the stuffin’ out of me, though. I’m not getting better very fast, and I certainly am still doing the “two steps forward, one step back” thing. But I am fairly certain (fingers crossed!) that the worst of it is past me now.

[jen-cueva]

Geez, @brenda-denzler, I certainly hope you are past the worst of this. I can relate to that two-step forward and one-step-back tango. Unfortunately, it seems that is my theme song after this recent hospitalization.

I am crossing all I can so we can both make more steps forward ASAP. Try to take it easy; I know you’ve been doing it all week. Hopefully, things will be headed more positively when we start next week, and you’re feeling much better.

Thanks for keeping us all posted, Brenda. 🤗