How many times do you wake up at night to urinate?

[brenda-denzler]

I’ve waken up to pee 2-3 times per night for a long time. The nights that I only wake up once are remarkable. I don’t take diuretics. At the dose prescribed for me, they don’t work. This probably means I need a stronger dose, but….

I was having a hard time today with walking around and, especially, standing in lines. And I was thinking that I surely have some level of CHF, even though my PCP says I don’t have it. Yet.

So I take it that CHF is one co-morbid condition that often goes along with PH?

[V.R. Peterson]

@brendad53, PH can cause right heart failure or left heart failure. When my son was first diagnosed, he only had RH failure. By time he had his PTE surgery two years later, he had both right and left heart failure.

I’m not sure how CHF figures into all that. Hopefully, some of our other members will know the answer to that question.

[Colleen]

@brendad53 congestive heart failure isn’t something I am familiar with in relation to PH. What is most common is PH being caused by left heart disease or right heart failure being caused by PH. In some cases as @mamabear007 mentioned happened to her son, PH can end up causing both left and right heart failure (RHF).

I believe RHF is most commonly seen because the heart needs to work harder to force the blood through the vessels against the pressure PH causes. Over time, this causes the right side of the heart to become larger.

My son was misdiagnosed for 2 years and by the time the PH was discovered the right side of his heart was seriously enlarged and as his PH progressed his heart received more damage, this is why he needed both a heart and double-lung transplant.

Most PH patients only receive a lung(s) transplant because it has been proven that as long as the heart isn’t damaged beyond repair, after the lung transplant the heart heals itself.

My son had Echo’s throughout his 2 years of misdiagnosis and all that it was showing was mitral valve prolapse, long QT and his pulmonary trunk being slightly enlarged. He started treatments for MVP and L-QT but I was told they weren’t concerned about the enlarged trunk, that is seen in many people and nothing to worry about. In hindsight I believe that was the first sighting of PH in his ECHO. Two years later when PH was suspected the doctor was floored at how enlarged the right side of his heart became between a short span of ECHO’s.

I assume you have had ECHO’s and you had a cath done, correct? That should have shown the condition of your heart, especially if it is enlarged.

Next appointment maybe ask your doctor if he can review your most recent ECHO and cath with you while looking at the images.

There is a diagram of the heart in this article that points out the different areas PH affects.

Pulmonary Circulation

[jen-cueva]

Hi @brendad53, I had CHF when diagnosed. This was most likely because I had PH before I noticed or paid attention to the symptoms. Because the right side of my heart was pumping harder, it enlarged. @colleensteele and @mamabear007 mention it can happen either way.

I know some PHriends who have PH and no CHF at diagnosis, but if the doctors weren’t aggressive with treatment or if it progressed without any notice, they then developed CHF.

Many with PH do also have CHF, but not everyone everyone will.

Yep, it sounds like your low-dosage diuretics needed a boost. You’ve had both Echos and RHC now, correct? Have you b been swelling or retaining fluid more than usual?

Before PH, I would maybe wake once at night to urinate; now, it’s quite a bit more most nights. IU hope I didn’t confuse you.

[brenda-denzler]

I’m not taking the diuretics. I don’t typically take them. And when I do, they don’t seem to do much. Which is WHY I quit taking them “as needed.” (“As needed” is how they were prescribed.)

I’ll have to ask my pulmonologist guy about all of this, I guess. Thanks.

[jen-cueva]

Hi @brendad53, I get it. Often those who take the diuretics as needed are on a low dose. This may be why it wasn’t doing anything. I don’t blame you for not taking them. Why take a pill if it doesn’t offer any benefit?

When do you see your pulmonary guy? Do you also have a cardiologist? Sorry, my brain has the Monday Mushes, hehe. Who am I kidding? It’s usually most days.

Please take care of yourself and let us know what they say about these concerns.

[Perry Abet Mamigonian]

Usually once or twice a night. I try to take my Lasix plus Aldactone usually before 11 am, that way it’s out of my system by bedtime.

[Colleen]

@mrperry009 scheduling your diuretic around when you prefer not to feel the effects more is an excellent point.

My son was the opposite. He preferred to take his in the evening because he was attending grade school and it was embarrassing for him and disruptive for the class when he had to use the restroom often. He unfortunately reached a point when he had to dose both in the morning and at night. Both he and the class just had to deal with it. Not fun!

It does seem that most adults would prefer not to deal with the bathroom as often at night. Let’s face it, as you get older your already dealing with that enough, the symptom doesn’t need help. LOL!

[jen-cueva]

Hi @mrperry009, do you take your Laxi and Aldactone twice per day? You must wake up early? I take my first dose at 9-9:30 and the last at 3:30-3:45.

It sounds like you have an excellent plan for your medication regimen. Thanks for sharing.

[Vicky Olsen]

I have had stress incontinence. I was put on Solifenacin for several years and found out in September that it can increase long qt, along with 2 of my other meds. Now I am on Myrbetriq for bladder control. Started at 25mg, now at 50mg per day and I no longer wake at night. Every day that I wake up after 8 or 9 hours sleep, I am thankful!!
The 2 other meds that I changed due to long qt are Pantaloc to Dexilant and Wellbutrin to Zoloft. I will have another ecg in May to see what difference the change of my pills made.
I found this out because one of my neighbors said Solifenacin could cause Alzheimers and I did some checking on it. Why was I the one to figure this out? Not my Pharmacist or my Cardiologist or PH Doc.

[jen-cueva]

Hi @vicky1437, oh no, yes, so many medications do have a warning about Long QT syndrome. We must be cautious with medications. Interesting that the pharmacy missed that. Do you use one pharmacy or multiple?

It’s a Catch-22 for us with these medications that are supposed to help us. I hope the changes will show some positive results on your upcoming EKG.

Thanks for sharing this reminder and your experience with stress incontinence. Eight-nine hours without waking to pee is excellent!

Enjoy something that makes you smile this weekend.

[Vicky Olsen]

Yes, it is not great that the pharmacy missed noticing that long qt was a connection in the meds that I was on. I will have to speak with the Manager to discuss that.
But my Cardiologist and his nurse both review my meds with me, so just a little disgusted with that….. and their lack of knowledge.
I was on Lasix for several years and never really noticed a change in my urine output or my ankles. Except then I did faint – so it was stopped.
Would medication for bladder control help when you are on heavy duty diuretics? Your Dr. may know about that or it might be worth trying to see if you get any relief with it.

[Colleen]

@vicky1437 I’m not sure how many doctors/specialists are involved in your care. Make sure they all know what the other has prescribed. Mistakes occur when doctors don’t consider what other doctors have a patient on.

As a rule of thumb, my son doesn’t even start a prescription another doctor prescribes until his pulmonologist/cardiologist approves it, and that hasn’t changed since transplant.

As I mentioned, I also have Long QT, just not as severe. My cardiologist has recommended that I contact his office every time a new medication is prescribed just to make sure he agrees it is safe to take with Long QT.

[jen-cueva]

Hi @vicky1437, yes, it is unfortunate that they missed this. But as Colleen mentions, it happens when we have multiple physicians on our care teams. I also ask my pharmacy to review all meds and remind them of allergies.

I also ask my other doctors to review my other meds before adding anything new. Do they? Not always, but most of the time, I will ask specifics, as this will interact with my PH medications, etc.

Next, we will start tattooing the info on our bodies, like our foreheads, so it’s not missed. Prolonged QT syndrome alert across your forehead? Could you imagine?

I’m sorry you experienced this. I bet you’ll be asking for suggestions to run it by your cardiologist and review your diagnosis and any interactions. It’s that, or maybe you’ll want that tattoo, LOL.

[Colleen]

@vicky1437 treating both PH and Long QT is very tricky. I wish I had a dollar for every time a doctor said, we could try this med…oh wait, we can’t because he has long QT.

The long QT I’m afraid he inherited from me. I also have it but not as severe as he did. Cullen’s was extremely bad. He was pulled out of sports because of it and that was 2 years prior to the PH diagnoses.

[Debbie Moore]

I take my diuretic at 7:00 am every morning, done by 10 am.  There are times I feel like I might need to take additional pills, but if it’s in the evening I usually don’t.  If I have appointments in the am, then I take it as soon as I get home.  I don’t get up at all in the night.

@brendad53 My diuretic was not working either.  My doctor changed the medication and then had to double it.  If you are having swelling, losing that fluid feels a lot better.  I have the option of taking more than the four pills a day, and it sounds like you have options being that it said “take as needed”. I would talk to your doctor first to see how many you can take.

[Colleen]

@debbie good point! I do remember Cullen’s diuretic being switched a few times and the dosages were often going up or sometimes even down. It’s kind of like blood pressure medication, it can be tricky finding the perfect balance.

[jen-cueva]

Hi @debbie, I’m grateful that you usually take your early diuretic AM, so it’s done before Noon. You’re like me; if I have an appointment in the AM, I take my morning dose after that. However, I take several different diuretics twice per day. Some days, one is three times per day. On these days, I take that extra one at Noon. That way, my last doses are still by 4 PM> I usually don’t go to bed until 10-11.

I’m glad that works for you, Debbie! It’s essential to find a balance and ways to manage your medications. Also, excellent reminder; usually if something isn’t working, it needs to be increased or changed. Thanks for sharing that tip with Brenda and reminding us of this factor.

[brenda-denzler]

Does anyone notice that what you eat plays a role in how often you have to pee at night — and in your fluid gain in general? I’m not talking about salt, which is a known culprit. I’m talking about other foods in general.

Conversely, does anyone notice foods that seem to help your body get rid of the fluid?

I’ve gained 3 lbs in two days, and I didn’t have to pee at all last night. I look it, too. My abdomen is distended today. I’m bloated.

[Vicky Olsen]

Hi Brenda, Think about your salt intake in the last 3 days – chicken wings and fries, pizza ?
This might be an “as needed” time for your diuretics and This might be the time to get some clarification from your Dr.

[brenda-denzler]

Yeah, Vicky. I know about salt. That’s why I said “other than salt.” I understand salt is buried in a lot of things. And I did look at my diet to see if I had eaten more salt than normal, but I had not.

Note: A complicating issue for me is that when I’m physically active for a while, my BP tends to fall. Fast. Lots of symptoms come with that. I discovered several years ago that if I had something salty and some OJ (sugar-y), I recovered faster. So I actually need salt in order to be functional.

[jen-cueva]

Hi @brendad53, yes, if I eat watermelon, cucumbers, celery, and other mostly water, I pee more often. However, those are a few things I love but have been told to limit for this reason. But I found these: lemon, pineapple, and ginger are somewhat natural diuretics. Green tea and other caffeine-rich drinks too. Are you a caffeine junkie by chance?

I can eat a whole watermelon alone or a smaller regular side one. OMG, now, my mouth wants lemon and watermelon. Hehe.

Do you tend to eat a ton of foods with high water content?

I have low sodium or hyponatremia at times. It’s from years of being told to eat a low-sodium diet—however, most PHers bloat with any tad of salt. So again, we are all different.

With your 3-pound increase in a few days and not peeing at night, I am concerned again, Brenda. Did you ask your cardio about trying a higher dose of diuretic or a different type?

Are you noticing swelling anywhere else on your extremities, etc.? When I retain fluid in my belly, then it’s more difficult for me to eat. I experienced that last week, with a 4-pound increase in 2 days.

[brenda-denzler]

I am taking creatine, per doctor’s orders. It has made me gain weight. I quit taking it for several weeks, and the weight gain stopped. But in the last 3-4 days when I’ve been taking it again, I’ve been gaining weight fast. The thing is, when I stop taking it, my weight doesn’t go down again.

And yes, I noticed my right foot looked extra pudgy this morning. But when I get full in my abdomen, it has an effect on my breathing.

I don’t eat a lot of juicy foods, but I drink unsweetened iced tea allllll day every day, have one cup of coffee (black),….

I may have to try some pineapple today. I can’t drink lemon water, though I really like it, because it gives me wicked acid reflux.

Nobody seems to take this fluid retention very seriously. I’ve mentioned it time and time again to my PCP, pulmonologist, and even to a cardiologist when I had one. Nobody gives it the time of day.

I’m off to eat pineapple!

[jen-cueva]

I’m sorry, @brendad53, that no one takes your fluid retention seriously. Is it time to find another cardiologist? I think you have some issues with this and need some relief.

Yes, the extra belly fluid also causes me to be more SOB. I’m not thin, but I weigh about 132 pounds. Four extra pounds in my belly make me miserable.

I also notice my hands sell and rings are too tight. I often won’t wear my wedding bands because it gets so tight. My lower extremities will have some swelling but not too bad, as I tend to keep them elevated when I can. If not, I’m like a puffer fish, as Manny says, LOL. I like your choice of words, “pudgy”- hehe. That makes me think of a brownie for some reason. 😉

Keep advocating for yourself; don’t stop until you get the necessary answers.

[brenda-denzler]

I keep my legs elevated whenever I’m sitting or lying down, too, Jen. Which is why I really notice when I get fluid in them. The only other thing I can do is wear compression hose to force some of that fluid back up.

I can’t believe that I’m not in some degree of CHF. It walks like a duck and quacks like a dug, IMHO. But the learned medical folks say no.

[jen-cueva]

Hi @brendad53, it sounds like you are doing what those with CHF are told to do. I agree with you on the “It walks like a duck and quacks like a duck” thought process. It’s frustrating that medical providers aren’t all taught this mindset.

How did you lose that extra weight? Did you drink lemon water or eat pineapple?

The good news is that your kidneys can go back to normal quickly. It’s only because you’re proactive and trying to keep them healthy. Kudos to you!

[brenda-denzler]

That’s the thing, Jen. The biggest “cure” for the bloating is just time. In a week or two my kidneys will kick in again and start working. I didn’t even eat the pineapple I intended to eat!

[jen-cueva]

Oh wow, that’s great, @brendad53. Do you find that you are bloated when you eat certain foods?

I know this is frustrating not knowing what the heck is going on, but the positive is that within a few days, things go back to your usual as far as bloating and extra fluid.

Maybe you drink more water or fluids when you become bloated. Is that a possibility?

[brenda-denzler]

I drink constantly. I always have unsweetened iced tea with me. On occasion, it’s coffee or juice or something. And I do drink it…it’s not just some kind of declaration of intention.

I’m not totally sure what makes my kidneys kick in again. I know it usually takes a week or two. If I back off my sugar intake, it can help. But this time I didn’t back off much, and still my kidneys decided to work again. It seems to be cyclic. It’s been going on for a couple of years, and I’ve noticed the intermittent nature of it.

I’m appalled that folks here have been given kidney problems because of the meds they take for the PH. It may be just the way it is, but it’s not the way it should be, and it angers me to think that this happens. As if you don’t have enough to deal with just trying to breathe!

I figure this is why I’m likely to live a long, long time. Because God don’t want me up there, because I’m PO’d and will have some pointed questions, and he doesn’t wanna have to deal with me! 🙂

[jen-cueva]

Hi @brendad53, wow, it sounds like you have always been a heavy drinker, hehe. As you describe, I mean regarding your iced teas, coffees, and juices.

I’m grateful that you see your kidneys bounce back, and often in life, most people will experience these fluctuations if they have any ongoing medical problems. Of course, the more health issues one has, they may be more often or worse than others. My first nephrologist told me this when I was diagnosed years ago.

Like you, it infuriates me, too, that something to help one thing caused my CKD. However, that’s the Catch-22 with all things in life it seems. We roll,l with the punches, and do our best.

Like you, I think most of us have questions when we make it to Heaven.

Take care, my PHriend, and remember to contact your cardiologist to let them know if your SOB and swelling continue.

[brenda-denzler]

Lost 2.2 lbs yesterday. Water weight. I keep seeing ways in which my heart and/or my kidneys are not working optimally, and my doctors keep disregarding what I see and tell them about. The good news is, eventually (so far!) my kidneys do start working better again.

[Dorothy]

Yes I have long been getting up 2-3 times a night. Recently I decided to address it buy going to PT for pelvic floor therapy. Due to moving from the area I can only make 4 visits. I believe 12 appointments is advised. So it can only work if I somehow have the time and energy to really work at it myself. I read here where someone takes their final dose of diuretic at 4PM. Will be borrowing that thinking as well. Anything less than getting up 2 or 3 times a night will surely be appreciated. BTW , this must be a very common problem. There are 4 therapists where I’m going who do nothing butt the dysfunctional urine-related problems. 🦉🤦‍♀️🦉

[jen-cueva]

Hi @dorothyirwin-browning, yes, it is annoying to be awakened because you must urinate. So, have you learned the pelvic floor exercises to work on this yourself? A friend I have has MS, and she had to do this. She has continued to work on these exercises at home several times weekly for years. But it’s helped her some.

Yes, try to take your last dose of diuretics earlier, if possible; 3 PM is better if you don’t wake up late and take the morning dose too late.

Good luck, and please let us know how this works for you and how the exercises are going. Hugs are with you, my PHriend. It’s so good to see you posting.

[brenda-denzler]

As for those pelvic floor exercises…I don’t know how many different ones there are. But the Kegel exercises can be done any time and any place. I play a “game” with myself when I’m out driving around. EVERY time I see the number “8” I do two Kegels — one for each loop of the “8”. On a car tag in front of me? On a house number on the side of a mailbox? On a “for sale” sign staked in someone’s yard? On the face of the big clock on the courthouse? That way I don’t forget to do them at all.

[V.R. Peterson]

That’s really clever, @brendad53. I’ll have to remember that.

[jen-cueva]

Hey @brendad53, what a way to stick to those kegel exercises. My friend with MS continues to do that at home, too, with others her therapist taught her.

For those who want to learn about kegel exercises, check it out with the link below. Mostly I hear women talking g about kegel exercises, but both men and women can benefit from this simple pelvic flood exercise you can do at home, or on the go, as @brendad53 shares. Whatever works for you.

Kegel exercises

Thanks for sharing this idea, Brenda; if not, the 8 others may find ways to remember to do this. I’m awkward, so paying attention and looking for all those numbers “8”s, I would be all over the road. Hehe.