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What Were Your Pressures At When Diagnosed?
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Hi Jen! Yes that is exactly what they said… that we caught it early. I didn’t ask what that really meant and was kind of confused since I was already in heart failure. But either way, I’m grateful to have a medication that works. I’m so new to all of this and still trying to navigate everything. I’m seeing that some patients have to try several different drugs before finding a combination that works, so I’m realizing just how blessed I am to have something that works right away! These forums have truly been helpful to new patients like myself, especially when doctors don’t take the time to break it all down, and partly because we don’t know that right questions to ask.
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Hi @tiffany-ramirez, it can be confusing and frustrating when doctors don’t take the time to explain things. This is—unfortunately, the time limits placed on them, most often, and high demand or caseload.
But, I would guess they meant they “caught it early” because it was your first time being seen, and it was noticed then, not several years later. I know, confusing since you said you were already in heart failure. But, I’m grateful that it wasn’t left untreated any longer and that the first treatment worked so well for you. So, true, some go through almost all PH treatments before finding the best combination for them.
I am grateful that you’ve found the forums helpful and supportive. Thank you for such kind words and for sharing your experience. Our outstanding members, like you, make this possible.
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I’m so glad that people like you and others are here for support and to help answer some of the questions. We live with the our disease everyday and I now know that doctors are limited to the information they have and that everyone reacts different or has different outcomes in their progression. I do feel like it was an uphill battle of trying to get information but now, I definitely feel like I have a much better understanding of what to expect!
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Thanks so much for sharing how helpful the forums are for you. I continue to learn from you all here, even after 17 years of living with PH. That is the battle, trying to find the best treatment for our bodies. Once we do, we can learn to live our new normal.
I’m grateful for your medical team and that you decided to join us here and share your experiences with PH. We live with it daily, and as I said in one of my columns, we ARE the experts of our bodies.
I hope you continue to find the forums beneficial and a safe place to share your thoughts or concerns. @colleensteele and I do this daily for this reason, to support others who need it and remind them that they are never alone.
Your feedback makes my heart full of joy!
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(Sorry I didn’t know where else to ask this question) Has anyone had, or heard of, Uptravi causing Increased BP? My husband’s has been going up steadily everyday until it hit 166/120 and his Dr recommended we go the the ER, (bunch of tests- sent us home) but his PH team has never ever seen this response and the Uptravi call center seemed very confused and told us to call his team. It seems to be a bit of a odd ball reaction.
His pressure is going back down little by little and is currently 150/100 but we are supposed to titrate up again this weekend and I am nervous that every titration is going to push his heart this hard.
Just wondering if anyone else has had this weird effect. I tried google and came up empty handed as it seems they only report BP going too low. If it did make your BP drop does it regulate and does it drop again with every titration?
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Hey @kygon, I’m so sorry to hear that Bryan’s BP is elevated. From my personal experience and what I’ve heard from others, Uptravi has the opposite effect. Honestly, all PH medications have that effect on most people. The keyword here is “most,” Of course, you know our bodies react directly. Is there anything else added or going on that may have caused this elevation in his BP? Did it start as soon as he began to the Uptravi?
If that’s the case, I hope his PH team will stop it and transition to something that doesn’t affect him. Did anyone add a BP medication to his treatment plan? Maybe a calcium channel blocker that acts as both would help if he is a responder.
Here’s a topic about Uptravi that you can read through.
Please keep advocating for him and let us know what they decide. I’m sorry that his BP is so high; he must be feeling horrible. What’s his usual BP range before Uptravi?
I’m sending big hugs and prayers coming your way.
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@Jenc before he started Uptravi his BP has never got over 130/78 and that was high for him. His team talked with the heart doctor on his team and they decided not to add the BP meds at this point because they are speculating that it is due to the blood volume increase making his heart work harder and they think it may be a temporary response, but he is kind of the yellow canary in the coal mine and no one seems to have seen this reaction before. As of now they want him to titrate again Monday instead of Friday but my husband wants to try to do it on the weekend because of the headaches and trying to work through it at work. But when he does try to titrate up they are only having him increase the evening dose for two weeks before trying to move up. I am just concerned about heart damage and possibility of heart attack. I know his Dr is saying the only other option is the pump and he really doesn’t want to go that rout.
While we were talking to his doctors I did ask about the nitric oxcide test and she confirmed they did do that test and he was non responsive, we just didn’t recall (most likely because they only do it on the initial heart cath and that was 3 years ago). But I appreciate everyone’s information so I could double check to make sure we are crossing all our t’s. Again Thank You for all the support. This disease is hard to understand because it’s rare, complex and everyone is so different.
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Hi @kygon, I’m sorry that you are going through this with Bryan’s titration on Uptravi. Hopefully, if he agrees and do the next increase slower, it will allow his body longer to adapt. I’ll pray and cross all I can that this is temporary. If he has any other heart attack symptoms, certainly take him in. But, his PH team is aware and hopefully plans to monitor his next titration and symptoms more. Unfortunately, it’s often difficult to differentiate between PH symptoms and other new heart symptoms.
Here is a little more about heart attack and symptoms, so you will watch for anything. Although, it sounds like you notice each new reaction. You’re an awesome caregiver and wife!This is when those de-stress and self-care activities could help.
I’m sorry because I know this is stressful and worrisome watching him going through this complication. Bless you both and know we are here for your support. We appreciate how vulnerable you have been with sharing your PH experiences with us.
This last statement is on point, “This disease is hard to understand because it’s rare, complex and everyone is so different.”
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Hi @kygon, I wanted to check in with you and see how you and Bryan are doing today. Any improvements with his BP? I’m thinking of y’all and sending you positive thoughts, hugs, and prayers.
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@Jenc Thank you so much for all of your support and yes his BP has come back to acceptable .. although still high .. and he only did the extra dose in the evening for two days and then added the morning titration .. his BP does spike about an hour after he takes it and then goes down to acceptable and his Drs seem okay with this so we are continuing to push along through the headaches and muscle aches and everything in between!
Thank you for thinking of us and I hope you had a wonderful mother’s day!
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Hi @kygon, my apologies to you for not responding sooner. I saw the headline a few days ago and thought I had answered. I’m happy his BP is in an acceptable range, and his PH team is aware and slowed his titration a tad. I hate that the headaches and muscle aches continue; I was hoping he was one who only experienced these side effects the first week or two.
Unfortunately, it takes our bodies time to adjust to these medications, and some do better with specific treatments than others. His PH team wants him to continue this Uptravi titration thus far as they monitor him.
Thanks for your Mother’s Day wishes. I did enjoy a nice relaxing day with the fam. I hope you did enjoy your Mother’s Day, too.
Take care and enjoy a lovely weekend.
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Hey @kygon, I haven’t seen you post recently, and you and Bryan have been on my mind. How are you doing? How is he doing with the Uptravi titration and the elevated BP? Any improvements from the last update?
I know you stay busy with work and as a caregiver, so please update us when you are up to it. Tiny updates to let us know you’re doing alright, etc., are enough, so we don’t worry. I am keeping you both in my thoughts and prayers.
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Hey @Jenc, Thank you for thinking of us! I have been around, read some of your articles and a few other articles but haven’t commented; We have been very busy with our son’s graduation and getting our yard and patio done in time for the celebration afterword haha, and it is my planting season … so Extra busy for me! I read your Wine Down time and I was sipping with you for sure as I usually have a glass every evening. I also related to your article about finding a new team… as Bryan and I discussed trying to get a second opinion after our daughter died, only to find out that the only other team in our area refers their patients to OUR Team when they progress past a certain point and Bryan is past that point sooo we just deal with the emotions at every appointment.. I don’t know if we will ever be able to walk into that building without the sniffles but at least we are blessed enough to have a team to work with!
Bryan is still working the titration just a little slower and it seems to be going better although his blood pressure is still a constant monitoring situation, but by adding only one pill in the evening for a few days before adding the extra pill in the mornings we are keeping it within “acceptable ranges.” The pharmacy has been a pain to deal with sometimes and we have to pay attention to how many days are left and as you are aware when your taking a handful a day it can be frustrating .. but we are learning to figure it out and know to call three days before we need more. I started massaging his legs every morning and evening which seems to be helping a great deal with the aches and I often try to apply pressure point massage to his head and neck but those pesky headaches are just stubborn! The headaches have recently started making him nauseous he takes over the counter stuff from time to time but he doesn’t want to ask his Dr for more medicine because he says he already takes enough pills …(stubborn) I guess that just means he is Determined rt hahaha.
We actually did a nono and bought a hot tub because when we were out of town the one at the hotel was like a magic wand for his head (but we are keeping the temp set lower so its just a big warm tub with jets) when he is in there he says it is the only time he is headache free. It was so expensive and I was nervous about spending the money, but it has been worth every penny to see his relief. I don’t know what the next titration will be like but its this Friday … Oh EEK that is tomorrow, the calendar seems to be flying by at light speed … I need more hours in a day it feels like.
How are you and your hubby doing? Any new adventures? Are you still on full time oxygen?
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Hi @kygon, let’s try again. I was halfway done responding to you, and I accidentally hit a button, and it went back, and I lost it. It’s early, and I’m drinking my first cup of coffee, hehe.
My apologies I am late responding, I had a “PH week,” as I call it, last week, and Friday took the afternoon off to rest, thanks to @colleensteele. I actually got a nap in, and it’s been a while.
It sounds like a busy time, but so happy ]you had that to look forward to and celebrate. Congrats to him on his graduation!
I can’t imagine how difficult it is to walk in those doors to see the same PH care team after losing your daughter. That has to be traumatic for you and Bryan.
It sounds like the slower titration is what he needs. And that hot tub, hopefully, offers relief for his legs, too. Has he noticed it helping that, too? I’m glad that y’all have it turned down, so it’s not boiling hot.
I use a heating blanket and hot baths to soak my legs often. You sound like my hubby, Manny, when it comes to the cost of something. If it offers me relief, he will make a way.
Is his pharmacy Accedo for Uptravi? They are usually good at calling a week or more prolonged before I need mine and get it here fast. If I miss a call, I try and order about 10-14 days out, plus I say I have a few less than I do to have a cushion of days. I know it’s a bit more difficult when he is titrating.
My hubby is doing well, thanks. No, I can take my oxygen off while sitting more here in San Diego and not suffocate. I am happy to have it off some. Not many adventures, wait, nope, last weekend, we did take the ferry to Coronado Island and rode our Ebikes for my longest ride yet. But, we had a picnic lunch and stopped twice to take breaks at the beach. It was lovely and a rest for my body. Although, my body and legs are just now starting to get back to usual. I was hoping to do another ride yesterday, but that didn’t happen. I hope to get back on my bike later this week for a shorter ride.
Enjoy the graduation celebration, unless it was over the weekend. I know prepping and then cleaning up after a party like that is a ton of work. Wine down each evening, and cheers and congrats to your son.
Thanks for the update, and take care of yourself!
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@Jenc, Yes it is Accredo and I know it is just for titration because we get one other medication from them and that one is fine, I guess titration is always messy with insurance during titration so they have to keep sending it almost weekly… but we are getting the hang of that as well. Ahhh yes party all over (Thank goodness) but 2 of my brothers are coming into town and using our house as basecamp so it starts over again and then our next big project is cleaning out the garage … MLEH. There is always a project around here it seems.
Oh how fun I am so glad you got such a wonderful day-sounds like my cup of tea! I bet the Ebike is so helpful, Bryan and I keep eyeballing them but we just spent a tiny fortune on the hot tub .. which he soaks in daily … sometimes twice a day hahaha I told him he is going to start needing to use lotion.. but all mine is foo foo flower smelling so I need to go buy him “man lotion” hahahaha. (eyeball roll) Yes it is super helpful for the leg aches and on titration weekends I massage them when he first gets out of the hot tub and he says that really makes relief last longer. Does the “Uptravi Aches” ever get better? I keep hoping after he gets to full titration that it wont be as hard.. It’s so dang hard to see the ones we love in pain! ~Keep taking care of yourself and never be sorry for a long pause… I completely understand!
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Hi there, @kygon; Accredo is so helpful, but the titration phase is more complex. But I’m happy to hear you all are getting it down.
Wow, your house sounds like a party house. Where are you all located again? LOL Parties and cleaning up before and after guests are exhausting. This evening take a nice bottle of wine and sit by your garden. You deserve some “me” time.
You’re one superwoman with a ton on your plate. You should probably keep that wine chiller full.
My E-bike helps me enjoy more adventurous and nature. I love it! Bryan would probably love one, too. But I understand a budget. Maybe he can find one once the hot tub splurge is worn off. One way to find a deal is to look online like Marketplace, etc., for people who bought them during the lockdown, rode 1-2 times, and then kept them in the garage. I’ve seen some around here like that.
With the aches from Uptravi, mine have never stopped but improved. Some people say it resolves during titration and others after. It’s so challenging to say because our bodies react differently. Yeah, I know Manny almost cries in pain when I am experiencing pain. I’m sorry that you are watching Bryan go through this.
Are you taking care of yourself? Thanks for your support and the update. Keep us posted, and know we are here to support you.
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Hey @Jenc, hahaha yes sometimes it feels like a party house with just us! We have two of his sons living with us full time and my 12 yr old full time, and we both have Very big families and with my house having so many rooms as some of the kids have moved out it just makes sense for family to hit us up when they are here. I have a brother living in Honduras and one in Singapore and a sister in Vegas and when they are hear they always stay here… I Guess that’s a compliment.. hahaha it just so happened that they are coming at the same time so it will be fun to see everyone. I have nine siblings however one of my sisters passed away from a blood clot at 42.. so I guess 8 now, hard stuff .. long story (I digress) anyways yes we are always busy…
I think sometimes Bryan tries to push too hard because he says projects distract him from everything ..( I think you might do that?) its a double edge sword but I get it!
I try to take care of myself and posted in the what’s on medical calendar for June that I am really trying to take care of myself with all my dumb apts. hahaha. I love the Ebike idea .. but I told Bryan I need a new roof first … the shingles are so brittle they are crumbling … EEEK … (I could panic at just the thought of water leaks and water damages) Sorry Rambling hahaha Anyhow yes Bryan is ALL about that FB Market Place .. I think when he isn’t looking for a deal for us he is looking for something for his parents, I call it his Market Porn (Hahahaha)
Keep up your amazing job doing what you do and know that I very much appreciate everyone’s support and friendship .. it is hard for outside people to understand what its like to live with this disease, and I think its easy for friends and even family to disregard the serious effects it has on life because they have their own life.
Well as tigger says TTFN, ta ta for now!
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Hi @kygon, party house, it is, then. So, I’ll take a room once you are registered from the siblings, LOL. But, it sounds like a family reunion, or mini, with your large families. I’m sorry to hear about losing your sister due to a blood clot at 42 (big hugs).
Ohh, I def relate to Bryan with keeping himself busy with distractions. But you’re right; it can be a double edge sword. He sounds like Manny with Marketplace. I swear that’s the only reason he has FB, hehe. Too bad, it seems we always need something to spend our money on when we want the fun things. I bet it won’t be long, and Bryan will find the “deal of a century” on an E-bike while scrolling.
Thanks for your kind words. I’m thrilled that you find the forums so supportive, It helps when others can relate, and you can share things most people don’t and will never understand. You have made some amazing contributions to the forums, and we all appreciate what you do, too. I know Bryan appreciates more than you’ll ever know like I do, Manny. He’s my lifesaver.
Kudos for taking care of yourself when you can, my PHriend. I hope that you and the fam have an enjoyable weekend.
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@Jenc, thank you for your ever kind words! and you are welcome anytime you want to visit Utah.. unfortunately all the national parks are about 4 hours away, but you can sit in our hot tub and sip some wine! We live in a cute little town called Pleasant Grove in Utah. Let me know if your ever in this area!
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You’re so sweet, @kygon. It would be cool if I could keep a roster of our members visiting with all as I tour the world. It sounds like this could be a highly-rated reality TV show. Hehe.
The hot tub is turned down(already done), and wine and good PHriends, sound like a great time. If I’m ever in the area, I’ll let you know.
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@JenC … Submit TV idea to NBC and have them pay for all your travels! hahahaha
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Hehe, @kygon, that would be cool. I wonder what we could call this reality show? Does anyone else want to take a guess? This could be fun.
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@jenc … hmmmm “Jens Travels for Phriends” hahaha
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LOL @kygon, that sounds good. What about “PHinding Phriends with Jen”? This could be fun, but I doubt we have enough drama for the reality TV world, hehe.
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@Jen love the name! and IDK I think you could find drama hahaha ,maybe not the right kind though. Oh I wanted to tell you we started clearing stuff out the garage and Bryan didn’t have to stop and nap, was able to push through a very long day (even though I tried to get him to stop Several times) I think we are finally seeing some of the benefits of Uptravi! fingers crossed
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That’s an excellent update on Bryan, @kygon. I’ll be crossing my fingers and my toes that the Uptravi is the best treatment for him. What dosage is he up to now?
Of course, drama is everywhere if we look around, right? Hehe.
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@Jen he is on 1000 mg twice a day and he starts the 1200 soon. Thanks for crossing those fingers and toes, we are doing the same. hahaha
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Hi @kygon, that’s excellent that he’s noticing a difference at 1000 mcg. Crossing all I can that his 1200 mcg dose will go well for him, too. Please let us know how it goes.
I hope y’all enjoy a nice weekend. Is your family in town now?
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Hi @kygon, that’s excellent that he’s noticing a difference at 1000 mcg. Crossing all I can that his 1200 mcg dose will go well for him, too. Please let us know how it goes.
I hope y’all enjoy a nice weekend. Is your family in town now?
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@Jenc, thank you so much for always thinking of us. My brothers arrive today and we are having about 20 people over for BBQ tomorrow so we can all visit with them hahaha, It will be fun but also have a lot to finish up before they get here but both rooms are ready so …. I look forward to it but also to it being over and done!
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@kygon I bet you had a great time hosting the BBQ! Do your brothers live out of state? How many do you have? Well, I hope the day ended with wonderful memories!
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Hi @kygon, hopefully, you enjoyed the family party reunion and now resting a little before you begin the clean-up. It was a blast and much-needed laughs for you and your family.
This week is for your garden and sippin’ a little wine each evening, right?
How’s Bryan’s Uptravi titration going this week?
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@Jenc, Yes this week is all about garden and sipping the wine! definitely enjoyed the party, we will start on the big bad garage project this weekend … we are both a little taxed from everything in the last few weeks. Bryan will titrate on Friday up to 1200 mg twice daily, … I know it will be a hard weekend with our project but he can play instructor we have our sons to help me with the heavy lifting but undoubtedly he is going to push too hard..
How are you and your husband holding up? Anything new? Sending love and light your way!
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Hi @kygon, I bet you are both exhausted after several busy weeks. But I know you both enjoyed every minute, too!
Back to wine and gardening, huh? That sounds like a plan to me. Hehe.
I will keep crossing all that. Bryan’s titration to 1200 mcg tomorrow goes well. It sounds like y’all will be busy again with the garage. I’m grateful that he has the boys to do the lifting, and he can supervise. But if he’s anything like me, he will have to get his hands a little dirty, too.
This calls for more sitting on the porch sippin’ wine, to me.
Manny and I have been sick, unfortunately, this week. I’m guessing we caught a bug from attending my friend’s memorial service Monday. We were both sick Monday night. So not too much going on here except rest and fluids. I know nothing exciting to share this week.
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@Colleensteele I have 5 sisters and 4 brothers and the two visiting came from Singapore and Honduras, brother in Singapore is a professor and one in Honduras is a master Engineer (meaning he has a degree in all types engineering. We have a big family and yes it was fun hosting and catching up. I always enjoy hosting but I always enjoy when it’s over too hahahaha
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When I was diagnosed, after my right heart catheterization, I was 95/38 mean 56. Pulmonary arterial wedge pressure at 7, LVEDP 8-10.
When my doctors broke the news to me about getting PAH, they literally didnt explain or say anything. I was attended by a different cardiologist then, it felt so awkward when I was discharged from the hospital and was referred to another Cardiologist – reasonbeing PAH is rare + with Still’s disease, so they had to find someone with experience. And this was in Singapore, one of the top countries with a lot of good medical doctors.
So it was definitely difficult for my mom and I throughout the past few weeks. They wanted to run tests but never explain about it so we had to google and watch videos. They told us I had to get a right heart catheterization done with 1 catheter, on the day of the procedure, the doctor came to me 15mins before in my ward room and told me they had to insert 2catheters instead with no futher explanation whatsoever.
Thinking back.. everything was unbelievably scary and I don’t think I’ll be able to go through that week of suspense, fear and anxiety again.
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