What Helps You Most With Managing PH Symptoms?

[Pam Muell]

I have to pace myself when doing any sort of activitiy.I have chest pressure and burning sensations most of the time but especially if I do more than my body can tolerate.

[ky]

I know I don’t have the disease but my husbands biggest complaint remains his aches, esp his legs, his best friend is massage, heat and soaking. We recently found a larger heating pad has a timer dial on it and that helps his legs when he lays down and as it gets colder we have a heated blanket.  I know we both appreciate his POC and I cannot for the life of me figure out why insurance will not assist with the cost, but I would say it has been worth every penny!

Time management and planning ahead for bigger activities is also helpful as well as learning your limits… this can be a big learning curve, I will often remind my husband that he needs to rest or be done for the day and he will protest and insist on pushing,  only to be in bed the entire following day… Don’t hate the ones who love you enough to say That’s enough for today.. Your caregivers are there to help and unfortunately often that means help remind you to put on your oxygen, take a breather, take your medication, eat… hahaha the list goes on and on my PHriends.

Stay well keep living and be blessed everyone

[jen-cueva]

Hi @kygon, like Bry, I find my legs ache the most. I also use hot soaks and heating pads. I don’t do a massage that often, but I stretch at times to see if that helps.

I fought with my insurance company to cover part of my POC years ago. Of course, they didn’t cover much, but eventually, they covered $1000 of mine. But the HR manager at Manny’s job had to call and talk with them, too. Sadly, the insurance will not pay. My POC helps us get out and do much more than those dang tanks.

I love this, “Don’t hate the ones who love you enough to say That’s enough for today.. Your caregivers are there to help and unfortunately often that means help remind you to put on your oxygen, take a breather, take your medication, eat… hahaha the list goes on and on my PHriends.”

Manny agreed, I just read it to him and he is nodding his head, hehe.

Thanks for sharing girl. Caregivers’ input is greatly appreciated as we patients love and are so grateful for your support.

[jen-cueva]

This weekend it was wet here in San Diego. This meant my leg pain was more than usual. I tried hot soaks in the bath with some Epsom salts enhanced with essential oils and my heat blanket. When that didn’t help, I gave in on Saturday and took my pain medications.

Do you or your loved one experience more leg and body aches when damp outside?

@kygon, how are y’all doing? Any new grandbabies yet?

[ky]

@JenC, Oh yes Bryan can relate with the storm fronts he is often better at predicting the weather than the news hahaha. He, like you and @Colleen, tries to stay off pain medication and only caves once he reaches a certain point. What do you take? Bryan takes Tramadol and he calls it  Damn-it- all. But it really only seems to take the edge off for him.

No grandbabies until next month. We are one shower done for a granddaughter, (that one was smaller with only about 15 people) and I am working on the shower plans for grandson on the 25th, this is going to be a big one! So far we have about 60 people coming .. IDK where everyone is going to sit but this is what mamma wanted so we will work it out. Thankfully we have a bunch of folding chairs and tables! I admit I will be glad when it is over.. I tend to like a bit smaller gatherings but I will figure it out! Hoping we get a spell of good weather that weekend so we can be outdoors!!

[jen-cueva]

Hi @kygon, too funny; I love how you say Bryan can predict the weather better than the news. I can relate. I take a gabapentin routine, but that’s now decreased to 2x per day instead of 3 because of my kidney function. I have a muscle relaxer, methocarbamol(Robaxin). It helps but doesn’t take away the pain.

Wow, that sounds like a huge baby shower. I bet you’re an awesome planner; all will turn out great! Like you, I prefer smaller gatherings. I have always enjoyed being around people, but smaller groups are best for me.

Yes, hoping the crazy weather will clear up and y’all have some lovely weather for the weekend of the 25th.

Thanks for sharing and popping in. I know you’re crazy busy with this baby and shower planning. Soon, it will be time to sit on your patio and garden with that glass of wine. Check-in and let us know how all goes on the 25th. Take care, sweet friend.

Does Bryan have any new upcoming appointments?

[ky]

I will let you know how it goes for sure beautiful friend! Bryan was on gabapentin daily but they told him that it can affect his lungs and kidneys so he rarely if ever takes it now. He had an appointment and follow up and they are good with him staying on the 1200 and 1200 uptravi (for now) as long as he will use his oxygen as needed during the day (he really hates it) but I am a nag so he usually complies especially during storm fronts. It was a huge relief not to have to titrate up again… but they are taking it one appointment at a time per say. I rather think everyone is that way with PAH .. Uptravi or pump .. the meds all have such aweful side effects hopefully science is on its way forward with some better answers!! Praying for everyone dealing with this disease!

[jen-cueva]

Hi @kygon, yep, gabapentin can damage our kidneys and other organs. My team weaned mine way down, so it’s a low dose twice daily. I can tell the difference, though, so it was helping with my leg pains. However, like with all meds, that Catch 22 we all know too well.

I’m happy that Bryan listens to his Bosswoman most days, anyway. If 1200mcg twice per day of Uptravi works for him, I agree the lower dosage we can get by without suffering is best. Then we can always try and increase and deal with those annoying side effects if needed later.

Yep, I look forward to hearing about the next baby shower and how you’ll enjoy that patio and wine afterward. Take care of yourself, my sweet friend, and tell Bry he better listen to you, or we are all coming for him.Hehe

[ky]

@JenC, Oh I will let him know hahaha

[jen-cueva]

Let me know what he says; if it’s inappropriate, I think it may be; feel free to text me. Hehe. @kygon

Hiding out inside the trailer or ordering in and date night with Netflix and chill sounds like what y’all need.

Wow, are y’all also hosting the friend’s big birthday bash the weekend after baby shower #2?

@colleensteele, and Ky, I’m glad the PH teams could be less aggressive and titrate slowly with Cullen and Kay’s treatments. Those must be so challenging to figure out for the smaller ones. I know it’s based on weight but still, such tiny bodies. Was Kay a petite girl, too, @kygon? Is that her full first name or just a nickname? My Kayla, we call KK.

Happy St.Patrick’s Day! Have a lovely weekend, and maybe enjoy a nice glass of wine, ladies. Green beer should be the theme today, right?

[Colleen]

@kygon yay to no titration! Cullen’s PH doctor would have us go up or down on his Flolan VERY slowly because he was so sensitive to it. Headaches were his worst symptom.

What are you two up to these days? Any plans for the weekend?

[ky]

@Colleen Kay’s worst symptoms on romodulin pump were headaches and site pain as well.

Not really, this weekend I need a break I have the baby shower next week and have a lot to do to get ready and then the weekend after that we have a good friend’s big birthday bash so if we do anything it will just be date night and quiet, maybe even escape for a night in the the trailer LOL.

[Colleen]

@jenc making the decision to take pain meds must be hard but I hope you don’t let yourself go too long trying to handle the discomfort on your own.

Brian and I have arthritis and our joints definitely don’t like the damp weather…good think we live in the Seattle area right? Haha

Cullen has osteoporosis and arthritis from his transplant meds. He struggles with damp and cold too. He also complains that his zipper and drainage scars tend to bother him in that weather too.

[jen-cueva]

Hi @colleensteele, I sometimes struggle to take pain meds as needed. As you know, we are both a tad stubborn. However, once it reaches a certain level, I tend to give in and take something unless I know I have things to take care of or appointments.

My pain med doctor always told me not to let it get to a level 7 or 8. I usually wait until it’s near 10 when I am busy. On other days, I give in and take it and hope to rest with a little nap or a movie on the couch.

I know you, Brian, and Cullen must struggle with pain constantly living in Seattle. With the rain here in SoCal recently more than usual, I think about you and your family and @cdvol3gmail-com living there, and it’s wet and cold often.

My goal is to come that way soon. Hopefully, in the drier season when it’s cool but brisk. Hopefully, this year, but I will let you both know,h

More rain is expected here today, and through the night, so I am preparing for that and will take pain meds as needed. Thanks for sharing your experience with the rain, damp air, and pain. I hope you all have something hat offers you some pain relief.

[jen-cueva]

Hi @colleensteele, I sometimes struggle to take pain meds as needed. As you know, we are both a tad stubborn. However, once it reaches a certain level, I tend to give in and take something unless I know I have things to take care of or appointments.

My pain med doctor always told me not to let it get to a level 7 or 8. I usually wait until it’s near 10 when I am busy. On other days, I give in and take it and hope to rest with a little nap or a movie on the couch.

I know you, Brian, and Cullen must struggle with pain constantly living in Seattle. With the rain here in SoCal recently more than usual, I think about you and your family and @cdvol3gmail-com living there, and it’s wet and cold often.

My goal is to come that way soon. Hopefully, in the drier season when it’s cool but brisk. Hopefully, this year, but I will let you both know,h

More rain is expected here today, and through the night, so I am preparing for that and will take pain meds as needed. Thanks for sharing your experience with the rain, damp air, and pain. I hope you all have something hat offers you some pain relief.

[Randolph Reynolds]

This question goes to the heart of managing PAH.  When I was first diagnosed with this disease the Pulmonologist told me that it was a life changing event.  I didn’t realize how life changed for me for the first two years as I was on just Adempas so I was mobile but subject to shortness of breath.  To handle that I stopped all my exercise routines except for walking.  Other than dealing with some depression that grew because of the changes I managed to maintain a fairly normal life style.  Then four years ago, to the day, I went in for a three week stay in a hospital that supported people with this disease.  I came out having to be on supplemental oxygen 24/7.  It was then my limitations became  so invasive.

My procedure every day seems to be working.  The worst thing is site pain that occurs when I have to change my infusion site location – usually because the pain level goes up and it has been at least six weeks since my last change.  However, I do not take pain medication for the onset of new site pain because I have experienced that it takes 8-10 days for the pain to subside.  Each day I do a ‘light’ workout on the exercycle and that helps get rid of feeling drugged after a night’s sleep, especially if I have to use something to help me get back to sleep when I wake up to go to the bathroom.  There is a constant feeling of being just a little off balance but it is livable.

The best thing is to get out of the house and focus on other things with friends.  Taking on line courses or writing also help.  The question I deal with, and probably most others, is the repetitive nature of the management.  How to handle my emotions.  That is a moment by moment job.  Keep the faith and keep as active as you can.

[jen-cueva]

Hi @ripple76, thanks for sharing your experiences and thoughts on managing PH symptoms.

I’m in pain knowing that your site pain may last up to 10 days for each site change. I know many have found sites that aren’t as painful as others. Have you noticed any less painful sites for you?

Six weeks have been great since your last change. Is this your usual or dependent on where the site is located? My late PHriend Moma Hen was on SubQ and would have to change her sites much more frequently. Then it seemed her pain lasted 3-5 days, mostly unless there was an infection or more inflammation at the site.

Handling the vast rollercoaster of emotions is essential. Mental health will drag us down more than most people realize. It sounds like you have some excellent tips. I enjoy the outdoors when it’s not raining, like today in SoCal. Writing is therapeutic. Those who haven’t tried journaling, give it a try.

We are never too young or old to learn new things. What types of online courses have you taken? Are they free? Can you share some sites with us where we can find free online courses? I will tag you in a new topic soon so that you can share these places with us all.

Take care and keep focusing on other things. They say, “A human mind is a wandering mind, and a wandering mind is an unhappy mind.”

[Colleen]

@ripple76 I almost think PH research should work on how to make site changes less painful before they work on another treatment. It seems to be such an issue for patients and probably distracts from whatever good the treatment is doing.

My son was on IV continuous Flolan for 6 years. No changing sites but central line dressing changes were often painful because of the dressings. They really wore the skin down.

It’s good to hear you have ways of distracting yourself but I empathize that there is still a lot of time spent handling the physical and emotional drain PH can place on patients.

I’m so sorry and know that we are always here for you.

[jen-cueva]

Hi @colleensteele, you would think they would develop something less painful. However, researchers are trying their best to make these treatments available in oral forms. But they must know some do better on IV or Sub Q, and those treatments should also be researched and technology advancements made to offer more comfortable options for those who require it.

If Cullen’s skin is like mine, a bandaid will tear my skin, so I can imagine having these dressing changes so often will tear through the skin and break it down. That hurts.

Excellent conversation here.

Take care of yourselves. Do something that makes you smile this weekend! 🙂

[Colleen]

@jenc to this day he is extremely allergic to Tegaderm, which is the main product hospitals like to you. IV300 was ok to use short term. An Accredo nurse introduced us to Primapore Dressings and they saved the day! Only problem, hospitals rarely carry them so we would have to make sure they were in our hospital to-go bag. Depending on what was going on sometimes the hospital would let us use Primapore but sometimes they wouldn’t because the dressing isn’t see through.

Our fellow PH columnist, Anna Jeter also had better luck with Primapore.

Cullen is also very allergic to Chlorhexidine which is used for dressing changes and it’s in the wipes that the ER gives patients to clean up before surgery. It took a while but we eventually got approval from Cullen’s doctors to never use Chlorhexidine, just peroxide or alcohol. The ER would often give us a hard time thought when we refused the wipes to clean up. He would have to convince them he washed up well before arrival.

Sorry, kind of off topic but thought these experiences are helpful to share. Patients can be allergic to things and not realize it. It takes careful observation and sometimes illuminating a product at a time to figure out what is causing skin breakdown.

[jen-cueva]

Hi @colleensteele, thanks for sharing that story to help us all to be cautious and watch for any adverse reactions. Many people don’t think about this with tape, dressing supplies, or the cleaning agents used at most hospitals. Some of these items are known to cause skin sensitivity and allergies in some people.

Here is a link to the dressing you mentioned that Cullen and fellow PH columnist Anna Jeter found that worked for them-Primapore. Please let me know if this is what it was and if not, we can link to the specific one in case others have interest in trying it, too.

[Colleen]

That is it @jenc thank you! We were able to order ours through Accredo which was covered by insurance. That was over 8 years ago though so I can confirm it is still offered. Excellent to know it can be ordered through Amazon!

[jen-cueva]

Hi @colleensteele, yes, ordering it from Accredo or whatever specialty pharmacy everyone receives their medication from would most likely go through insurance. Thanks for that reminder.

But if anyone needs to order it before then to try it, Amazon carries it. Sharing this dressing with others will benefit those needing to try other options.

[Joe D]

Here’s a tip, don’t fall down the steps.  I was getting our Honda generator ready, there was a big wind storm expected the next day.  I had the Honda on a dolly, I was creeping it down the stairs when whoops, I slipped and fell.   The dolly hit me in the stomach and I banged my head.  I got up and shook it off.  A week later I had a hematoma the whole width of my stomach. It’s a 75 year old stomach on blood thinners.

I’ve had PAH for over 3 years. I’ve got COPD, and a pacemaker,  On oxygen 24/7.  7 liters. I go to local hospital for physical therapy four days a week to stay in shape.  Only 42 bucks a month with 3 full time nurses and a physical therapist.  What a deal.  Only good thing about falling down the steps.  I get the rest of this week off.

[Colleen]

@joedunckel oh no! That sounds like a nasty fall and on blood thinners…yikes!

You shook it off! You and @terry should be pals!

So, I assume your nurses know about the fall now? How about your doctor? It must hurt like heck! Keep us posted on your healing.

[jen-cueva]

Oh wow, @joedunckel, sorry about that nasty fall, body. I took a fall late last year, and it wasn’t too bad compared to what you described. However, it required staples in my head. If not for my hubby, I may have never reached the hospital; I guess I lost so much blood.

Again, you were hauling a Honda generator on a dolly down the stairs? I moved here from an area where we needed generators for hurricane evacuations and know they are;t light. I’m just wondering why you didn’t ask for some help. I know no one wants to ask for help.

Like @colleensteele, I assume your medical team is aware of this fall and hematoma by now. Maybe not, since you are taking off from PT, where you have nurses look over you. How long have you been attending PT there?

I’m with Colleen; you and our comical and fall-prone stubborn @terry should connect. You two share some traits.

Thanks for updating us, and I also hope you can now ask for help from others when moving a generator, especially up and down stairs.

Take care, and let us know how things are going.

[Randolph Reynolds]

Jen

I have finishing 14 courses from Hillsdale College, online.Hillsdale.edu,  These aren’t for credit but what an experience learning more detail about history and people as well as philosophy and religions. Just for general learning Wondrium has a a lot of topics with several lectures each that are very informative. [email protected]

Still plugging away at my USAFA Class History tome.

[jen-cueva]

Hi @ripple76, wow, that’s impressive! I would be taking classes mainly for my interest, but I look forward to hearing from others if they have taken any online courses for interest or work after their PH diagnosis.

I continue to do my CEUs for my nursing license, which is not much and is only required every two years. These are more specific, but others would be for fun and maybe various topics.

Congrats to you on the 14 courses completed at Hillsdale College online! Keep your brain active, buddy!

[DeLois Tweedy]

@joedunckel I was very sorry to hear about your fall. I pray you are recovering well.

I too am on blood thinners. Didn’t this scare you. I would have been so frigjtened.

 

[jen-cueva]

Hi @deetweedy, yeah, a fall of any type is frightening. However, being a blood thinner and falling is more of a risk and would make me more frightened, too. I’m no longer on blood thinners but am anemic and bruised with any little bump. My hubby, Manny, says he sometimes needs to wrap me in bubblewrap. I’m clumsy, too, hehe.