How Has Your Breathing Been Lately?

[Susi Steppins]

Hi @jenc.

It’s quite the coincidence that you ask this question today.

I had a really bad night last night and felt like I wasn’t getting enough air.

I had to turn my oxygen up to 4 to keep it in the low 90’s.

This is still pretty new to me so when these things happen I am not sure if it is just me or if this is common for others who have PH.

 

Today I am resting trying to keep my feet up as well.

Maybe tomorrow’s plan too.

It does make me feel somewhat better to know this is something that happens to others, but I wish it didn’t happen to any of us.

It is scary sometimes.

[jen-cueva]

Hi @s-steppins, the heat can certainly drain us. I, too, feel like I struggle so much more in this Texas heat and humidity. So, I, too, often take more breaks indoors.

Feet up, stay hydrated, and inside the AC. It sounds like you probably overdo it some out in the heat. It is not uncommon. Naps help, too, if you can take naps. You are not alone.

It can be scary, but learning these new norms and listening to your body is key. It sounds like you are doing that. Kudos to you. Rest, hydrate without overdoing it, and know that the hotter days may drain you much faster.

Get those ice pops or something cool to keep in the freezer for those days. Cool cloths or icepacks on the back of my neck help me cool down when I start feeling too hot.

[Susi Steppins]

So I have been really worried the past week or so because my breathing seemed to be drastically becoming more and more difficult.

As I showered a couple of nights ago I was having so much trouble catching my breath I wasn’t sure I would make it through the shower and had decided that when I was done I was going to ask Brad to take me to the emergency room.

While I was drying off I took the canula out of my nose and pulled the hose over the top of the shower and as it passed my face I felt a strong gust of air hit my skin. Upon investigating I found out that there was a large hole in my 50 foot tubing and that is why I have been so short of breath.

I actually got up one night and followed the entire length of the hose to inspect it to make sure there were no kinks but would never have seen a hole.

So mystery solved for now.

Perhaps someone here will learn from my mishap.

[jen-cueva]

Oh no, @s-steppins, that must have been quite scary for you. I am grateful o hear that it was a small leak in your tubing. I often run down my hose if I notice a big change or feel like I am not getting adequate air.

I have not yet found a hole in my extension tubing, but the cannula tubing has leaked at times.

Big hugs and prayers are with you. I hope this is helping you not struggle as much.

I never thought of sharing until you mentioned that. I think this is more common than we realize, especially with the longer extension hose. Thanks for sharing.

[Carol King]

I have exercise induced PH.  the first times I had problems with breathing were out at craft show in AZ in I got hot and trouble breathing. Almost did not make it to the truck..   I garbed the ice pack from the cooler and cooled me down.  I thought I was having a heat stroke. Did not wear oxygen at that time.  I learned quickly not to get out in the heat. Still even with oxygen I refrain.  Cold wind is just as bad. A scarf around my neck to cover my nose is part of my winter coat.  In the Texas Panhandle wind is always a problem.  Lower humidity is best. Always some trick to learn to help.

[jen-cueva]

Hi @carol-king, yes, you are correct. You learn fast about staying indoors in the AC when the heat is so bad.

The cold air also affects my lungs. If it gets in, my lungs start to burn. I am on the Texas gulf coast, so we don’t deal with cold too bad.

But when visiting my late inlaws in Ohio during the holidays, I had to keep scarfs and extra gear anytime I went outdoors.

Lower humidity helps; I have fewer breathing problems when I am visiting San Diego and other areas. Here the humidity is suffocating some days.

Have you always lived in the Texas Panhandle?

[Carol King]

sorry I am so long in giving an answer. Caring for my husband of 66 years, so I don’t check in everyday.
I have lived here all my life. We are on the farm, but since retiring have traveled in an RV for many years. Dry AZ. winters helped my breathing. I use a BiPap with oxygen and when I nap that helps restore my oxygen. The high pressure system that has been in control of our weather this week seems to cause me to have headaches. I have exercised induced PH, but just going up and down hills always affects my breathing, with or without oxygen. Everyone is different and has to find what works for them. Always something new.

[jen-cueva]

Hi @carol-king, how are you doing? Are you still popping in the forums every so often?

I wanted to share this post again to see how everyone’s breathing has been. Has the change in weather affected your breathing? Has this been an improvement or worsening? What time of the year do you notice your best breathing?

[Carol King]

I do still pop in once in a while. I didn’t realize how long it has been since I posted. The last 5 months have been difficult. I lost my husband the last of Oct 2021. Just as I was getting somewhat used to my new life(still working on that) I fell. Didn’t think I was hurt, no broken bones and not bleeding. Four days later when I felt the pain was telling me something was wrong and went to the doctor. I was breaking out with shingles, had whip lash from the fall. The next 2 months was not anything but painful. I am doing well now except I lost my voice.
Lots of people trying to help, lots of test to find why. Next is Speech therapy like singers do. Maybe I can sing later. Be great cause I never have been able. I thank the Lord that I am feeling well otherwise.
Oh yes, my breathing. We have a drought, the wind and dirt keeps me inside most of the time, unless I am going to another doctor. Dry heat does not bother as much as lots of heat and high humidity. Wind and weather fronts coming through 2 or 3 times a week always make breathing difficult. Thanks for remembering me.

[Colleen]

@carol-king it is good to hear from you but I’m so sorry to hear about all that has happened since you last shared with us. My deepest sympathy for the loss of your husband. Do you have family or friends who have been able to offer support, perhaps even advocacy when you need it?

I’ve heard that shingles is painful. I can’t imagine dealing with that on top of everything else!

In regard to the loss of your voice…I’ve posted below a link to a discussion in the forums about others who have experienced changes in their voice.

I also included a link below from an article in the National Library of Science that might offer some points to discuss with your team regarding the loss of your voice.

I hope you will keep us updated on how you are doing.

Forum Discussion:  Do You Ever Notice Changes In Your Voice

National Library of Science: A Rare Cardiac Cause of Hoarseness of Voice

 

[jen-cueva]

Hi @carol-king, please know my thoughts and prayers are with you after losing your dear husband. I’m so sorry, do you have loved ones around to comfort you?

Wow, then shingles, your poor woman. I know my mom had shingles, and it was excruciating for her. Thankfully hers resolved pretty quick.

And your voice? That’s terrible, but as Colleen mentioned, we have had discussions about hoarseness, and I often get hoarse at times, still. It’s not often, but usually for me when I’m exhausted.

Regarding your breathing, yes, the drier air helps me, too. But that wind blowing particles around always makes breathing more difficult. For those with allergies and asthma, with PH, it’s worse. The seasonal changes also impact breathing for many of us.

Please know you’re in my thoughts and prayers, and keep us posted on how you’re doing and how we can best support you. Thanks much for checking in.

[Debbie Moore]

In Pulmonary Rehab I learned that if heat + humidity is greater than 150 then stay inside.

[jen-cueva]

That’s an excellent tip and way to think about the total effects of heat and humidity. I had never heard of it like that. Thanks for sharing, @debbie. I bet many others have not listened to this simple tip and reminder.

How’s your exercise going? How are you feeling this week? Has your heat and humidity there been that high already?

[Jimi Mcintosh]

I have been experiencing more difficulties early morning and early afternoon breathing.  I am trying to get a pulmonary appointment to discuss this and to get approval for a different mask for biPaP. Hopefully for different inhalers.  Had MRI last week found that I have a full tear in my right shoulder,intense pain at night and when using BP cuff during dialysis.   Breathing is the biggest issue, hoping for relief

[jen-cueva]

Hi @jimi, I’m sorry that you’re experiencing such breathing difficulties. Hopefully, your pulmonary doctor can add or change some of the meds and your mask for BiPAP to see if this offers you relief.

Geez, with that and your tear in your right shoulder, you must be highly uncomfortable, my PHriend. I’m so sorry you’re having such challenges. Please know you’re in my thoughts and prayers.

Once you hear back from your pulmonary doctor, please let us know the plan to help offer you relief. Did they say you can use ice and heat for your right shoulder? I can imagine that the cuff at dialysis is intensifying the pain.

Gentle hugs are coming your way from San Diego.

[Colleen]

@jimi I am so sorry to hear about the pain and breathing complications you are experiencing.

How did you hurt your shoulder? Was your breathing decline occurring prior to the injury? Intense pain can make breathing so much worse and considering that the shoulder bothers you worse at night that can explain why your breathing is worse in the morning and early afternoon.

I’m suggesting the shoulder pain in the trigger for your PH worsening but whether it is or it isn’t the cause, your doctor needs to address it. I hope you get to see the doctor soon and leave with a treatment plan that will help you breath better.

[jen-cueva]

Hi @jimi, how are you doing this week? It’s been a while, and I know you have been experiencing such breathing difficulties recently. I am thinking of you, buddy.

How’s everyone else doing so far this summer with your breathing? SAre y’all staying cool and keeping hydrated?