PH Questions As I Prepare To See A Specialist For The First Time

[V.R. Peterson]

@brendad53, before my son’s surgery, he experienced the same. Mild days were “good” days where he only needed his oxygen at night. Any barometric pressure change up or down would ensure a bad day. So would days that were colder than 60 F or hotter than 72 F. Rainy or snowy days would also make his symptoms worse. While we’re in a relative arid climate, I’ve heard other PH patients who report than high humidity also worsen their symptoms.

For my son, weather was a definite predictor of how he was going to feel any particular day.

[Colleen]

@mamabear007 it was the same for Cullen. Extreme cold or extreme heat was hard on him. I think it must be common because his specialist didn’t want him outside in extreme weather. He gave us a letter to hand over to his grade school excusing him from going outside for recess or lunch on days like that.

[brenda-denzler]

@mamabear, it sounds like there was a a very narrow band of environment in which your son could feel decent! I’ve noticed (so far, since I’ve been keeping track lately) that very cold weather is a problem and incoming low pressure fronts are a problem. Haven’t tracked to any other environmental conditions, but I’ll be keeping my eye out for such things.

[V.R. Peterson]

@brendad53, that’s exactly it. There were very few days during the year that he felt well, at all.

@colleensteele, it was good that Cullen’s doctor wrote that note.

[jen-cueva]

Hi @brendad53, I., too, as I shared in your message, feel the effects of the weather and environment on my symptoms. The cold weather was harsh as it burned my lungs, making my breathing worse. But also, the high temps mixed with humidity along the Texas Gulf Coast and the air pollution impacted my breathing, too.

The extreme heat, for instance, when visiting my late FIL in Lake Havasu, AZ, in the summer caused my body to retain so much extra fluid. My hubby, Manny says, it caused me to blow up like a “pufferfish.” I didn’t think that dry heat would affect me as much as it did.

So far, San Diego has been where I can breathe best, and of course, we know each day is different. Hence, this is a massive part of our motivation to relocate here.

[brenda-denzler]

How about time of day? I’m noticing that in the later afternoon the feeling of pressure (and urge to cough) starts building up in the center of my chest. I don’t notice that pressure as much in the earlier hours. Is this normal PH thing?

[Colleen]

@brendad53 nighttime was always the biggest struggle for my son. My theory is that as he tried to rest and fall asleep he became increasingly aware of his breathing, chest pain, etc.. Also lying flat was hard on him. He would have to prop himself up with a lot of pillows in order to alleviate the pressure on his chest and lungs.

[brenda-denzler]

I’ve slept at a 45-degree angle for decades. To keep my sinuses open! (This started long before Breathe Rite strips were invented!) But now, for my lungs, too.

I had a massage yesterday, which means I was lying pretty flat on the table. I noticed that I was having trouble talking in complete sentences without stopping to catch a breath. I only started doing this in late October or early November last year, so it’s a new thing.

I feel so bad for your son. What a way to have to grow up!

[jen-cueva]

Hi @brendad53, I, too, have found that my symptoms are increased later in the day. Overall, I’m more exhausted and start noticing more symptoms. I also think at times; it’s when we slow down and, as Colleen mentions, notice our breathing or chest pain/tightness more.

I’ve slept with three pillows for years since my PH diagnosis. A few years ago, we bought an adjustable bed, which helps me at night. Lying flat for procedures is often a struggle for me. I’ve heard others report that, too. I’m sure that your example of lying flat for a message fits in this scenario. But a massage sounds excellent; how long did it last? I can lie flat on my belly but my back; I always struggle for air.

[brenda-denzler]

Jen, I’m going to try to attach a picture of how I sleep. Been sleeping this way for several years now. It began with slight elevation of head, to keep sinuses clear, back in the 1990s. It has evolved as my breathing issues have emerged and grown.

The massage was 90 minutes. Usually get 60 minutes, but she has time to really work me over better with 90 minutes. Don’t do it as often as I’d like. Lying on my back is difficult. Lying on my stomach is very difficult. My sinuses close up, even when I’m wearing a Breathe-Rite strip. And I can’t inflate my lungs enough to get deep breaths. Or at least, that’s what it feels like. I feel like I’m breathing with normal-deep breaths, but can’t get deep-deep breaths, and so I’m slowly suffocating. At least, it feels like it.

I don’t think that I notice chest tightness more later in the day. I think it EXISTS more later in the day. It’s not there all the time at the same level. It’s worse later in the day. At least, at times.

[brenda-denzler]

Let me be a little more “soft-edged” in my response, above.

I’ve been told for so long that my symptoms aren’t noteworthy, aren’t serious, or are all my fault because in one way or another I’m not living my life right, that I’ve become touchy about language that seems to suggest “it’s you, not the actual situation.” I’ve felt so abandoned by the medical profession. And blamed for symptoms, as if I could and should control them with my lifestyle choices, and nothing more is needed. If I feel bad, it’s my fault, and only I can fix it. Make better choices!

So when you, Jen, phrase things as “I notice it more at night” or, in Cullen’s case, “he noticed it more at night,” my gut-level reaction is to say, “Oh no. It’s not that you were paying more attention but the symptom was the same. It’s that the symptom was increasing in intensity, which of course you noticed.”

I realize this is splitting hairs, and I apologize. And in fact, that may not be how you experience it. You may indeed feel that the symptom is at the same level of intensity throughout the day, and you only notice it at night, when you’re more tired. For me, it truly does feel as if the symptom is present at X level throughout the day, and then in the evening it rises to X+1 or X+2. It’s not just a matter of my perception. It’s a matter of the behavior of the symptom.

But I think that the basic answer to my question is obviously “yes.” Whether you frame it as a change in your perception, or a change in the symptom itself, it is not unusual to feel the symptoms more keenly in the later part of the day, as you get more tired.

Jen, how does your husband (assuming) handle your fading health in the evenings? It has to impact his life, too. Colleen, how did you handle it with Cullen, as he was growing up? How did you plan any family activities if he would poop out and become really symptomatic by the time later afternoon or early evening rolled around? Your whole lives have to be shaped and molded around this daily fluctuation, it would seem.

[Sally Hoffman]

Hi Brenda,

Yep, all the same things that everybody else has said, but I will add  This is a new life.  It’s not predictable.  But, was your old life really all that predicable?  and does it need to be?  We can try to get our old lives back, but that’s really not going to happen.  When the good days come, revel in them.  When the bad days come rest.  As soon as you think you have it all figured out, what time, when, why, PH is going to bang you over the head with something new.  New symptoms, new foods, can’t eat my favorite foods, You’ll find new favorites.  Make the good days really count.  When the bad days come, make the good hours count.  Remember, you haven’t started treatment yet.  Treatment will help!  This is a really scary time.  When you are scared, come here.  We’ve all been there.  We are with you.

[brenda-denzler]

New foods? Can’t eat my favorite foods? Can you explain that one?

I have alpha-gal syndrome, so have had to cut all mammal meats and products and by-products from my diet. What are the typical dietary issues for PH?

[jen-cueva]

Well said, @mainegal! Your words are the reality and offer hope to @brendad53. Brenda, most PH specialists, have patients on a heart-healthy diet that is low sodium. That may be another question to add to your list when you see the specialist at the end of this month. Some, like me, are also restricted on fluid intake; it all depends on our bodies and our PH team’s plan of care.

@mainegal suggests, enjoy the good days when you can. Your question about overdoing it is excellent. Yes, if we push too much, we are down for several days after. I call these my “pay to play” days. It’s an ongoing struggle to see how much we can do before our bodies send us signals that we’ve pushed enough. Learning to listen to our bodies will help.

TReatment will help, but as I shared in our messages, it takes time to find the best treatment plan. Often we are started on the lowest dosage and titrate up slowly to allow our bodies time to adjust. You will experience side effects, but they are worth having those “better” days.

[brenda-denzler]

I’ve had a high-salt diet for quite some time. My BP is fine; food tastes blah to me without more salt, and my BP when I try to exert myself tends to run low, so I ingest salt without remorse. In fact, after I exert myself and push too hard and my BP begins to plummet, HR shoot up, I get chilled, weak, trembling, etc., I suck on a salt tablet (and drink OJ) to increase fluid volume in my veins and get my BP back up so the associated symptoms will abate.

As for fluid intake, I carry water or UNsweetened tea around with me all the time. Have since I was in my 20s. And I sip on it all day. That’s one thing that I just can’t change. (No, no diabetes in sight.) Hope that doesn’t become an issue, because it’s one we may just have to find a work-around for.

[jen-cueva]

Hi @brendad53, I can understand your concerns about diet and fluid intake. But this all depends on your other medical conditions and your PH specialist. You will work together to come up with the best plan. This may not be a recommendation with all of your complications and symptoms. We are all different.

I would suggest bringing this question up with you see Dr. Ford later this month.

[brenda-denzler]

You’re right, of course, Jen. In theory, I should be able to talk things over with the doctor and together we could arrive at a course of action that we both think will work best given the situation(s).

One of my problems is that due to my medical past, I do not just assume that a doctor (or his/her nurse) is going to treat me with a collaborative spirit. Then again, for some doctors, “collaboration” means they offer you two options and you choose one. That’s not what I mean. I mean something far more fine-grained than that.

Has anyone here worked with or heard anything about Dr. Ford? Is he more of a “I went to medical school forever to learn to do this, so you need to LISTEN to me and do what I say!” type, or is he a “here’s what’s going on, and here are our options for dealing with it. I think X would be best. Your thoughts?” kind of person?

[brenda-denzler]

Another question: @SallyHoffman said when the good days or hours come, make them count. This makes me wonder if, in the effort to make them count, I might be prone to trying to do too much, and set off some PH symptoms that wouldn’t have popped up (or wouldn’t have popped up as severely) if I hadn’t tried to crowd so much of living into such a short time period.

So is it a matter of making good days and hours count by “grabbing the gusto” as much as you possibly can? Or is it a matter of making them count with moderation so as not to precipitate a backlash from your body?