January 3, 2022 at 11:35 am #32855
Wow, where has the time gone? My apologies as I missed welcoming some of you, our newest members.
As we continue to grow our close-knit PH community, our hearts grow larger. Hearing all of your stories and watching the support in our forums makes my heart happy.
We have many new PHamily members. Please help me welcome @debbie, @mariaagneta66, @rachb, @cuddlesbf, @nanaakwasiagyenimboateng, @maryshann, @williampatterson, @lsworsham, @dawnie911, @plansman, @rynn2, @sammygrl33, @guzu085, @sammyb, @chiefswife1994, @pamelacampbell, and @lindybear, to the forums. My apologies if I left anyone out.
I hope you all have had time to look through some of the posts shared by others.
If you have not yet, please introduce yourself a little. Here are a few suggestions to help get you started.
Your name and location?
Are you a patient or caregiver?
How long ago were you diagnosed with PH?
What PH medications are you currently on?
Do you have any questions for our members?
We look forward to learning more about your PH journeys. If y’all have any questions about the PH forums, please reach out to me or @colleensteele.
January 3, 2022 at 2:11 pm #32858William PattersonParticipant
Hello, I am a caregiver for my wife who has PH. We live in Pleasant Hill. She had some small mural-type blood clots a few years ago and then a few others even though she was on a variety of different blood thinners to see which worked and the cost. She is not on Eliguis but at $400 it is tough.
Here pulmonologist has got her scheduled to start on one of two pills that are supposed to reduce the backpressure from her lungs by reducing the blood pressure in the veins of her lungs. One is called, Opsumit and the other is Adempas.
Anyone ever used these or know if they work? We are waiting for her pulmonologist to tell her which one to start.
- This reply was modified 9 months ago by William Patterson.
January 3, 2022 at 10:26 pm #32863Colleen SteeleKeymaster
Hi William. Here are links to conversations we have started regarding Opsumit and Adempas. Feel free to comment and/or ask more questions about them. We have members who have taken these.
January 5, 2022 at 11:51 am #32874
Hi @williampatterson, welcome. I can relate and don’t know what I would do without my husband, Manny. Your wife is fortunate to have such a supportive husband. You guys are God sends.
I have been on both Opsumit and Adempas in the past. Adempas was most recent. But it wasn’t a good fit for me. Keep in mind that everyone reacts differently to these treatments. Because your wife has had blood clots, my guess is they will probably try Adempas as many with blood clots have done well with this one.
Also, it takes some time to see results when starting a medication. Usually, they are started at low dosages and titrated up (increased) every week or so.
Colleen has shared with you our conversations, a great resource, on these two meds in the past. Feel free to ask any questions you have, and we will do our best to support you.
I’m looking forward to hearing more about your and your wife’s PH journey. PH treatments are also costly. But most have copay assistance funds that help. You may want to ask the PH nurse about this if she hasn’t mentioned t once they decide.
January 3, 2022 at 2:25 pm #32860LIndaParticipant
Thanks for the kind welcome. My name is Linda and I live in Iowa City, Iowa. I was just diagnosed a month ago and tomorrow I see my cardiologist for the first time. I had Covid last year and I am wondering if that could have affected my heart. I guess I will get my answers tomorrow. I have one question and I hope you can help me. I plan to move to California in April and I will either fly or take the train. Is it safe to fly or take the train over the Rocky Mountain range? Thanks.
January 3, 2022 at 10:33 pm #32864Colleen SteeleKeymaster
I’m sorry you had reason to join us Linda, but we are glad that you did. All the members here are wonderful. You will feel very supported.
PH patients can fly and take the train but it’s best if you have a discussion about it first with your doctor. Do you have a PH specialist yet? Especially going over the Rocky Mountains or if flying, your doctor might want you using supplemental oxygen. The cardiologist should be able to advise you but I highly recommend asking for a referral to see a PH Specialist and be followed by one in the near future.
Have you looked into where you will see medical care in CA? My son was seen at LPCH (Stanford) and @jenc and a few others can advise you about other excellent facilities.
Best of luck with the move!
January 5, 2022 at 11:59 am #32875
Hi @linda, I am in the San Diego area in CA> Which area ate you moving to? I also know a fantastic PH center at UCLA besides UCSD and Stanford, as Colleen mentioned. There are others, too, depending on the location.
I’m sending you positive thoughts and prayers as you have your appointment with the cardiologist today. Is this at a PH center or an actual PH specialist? That does make a difference.
Flying and traveling by train is OK for most with PH. I would double-check with your cardio. That’s great that you already have oxygen; this will help you travel.
I also had COVID last year. All I can say is that it certainly can affect all of our organs. This is more so if you already had other underlying conditions. But, hopefully, your doctor will give you some more clarity. Although, I still think there are so many unknowns with the after effects of COVID.
Please know that we are here to support you and look forward to an update after seeing the cardiologist.
January 3, 2022 at 2:29 pm #32861LIndaParticipant
I forgot to add that I am not on oxygen therapy.
August 4, 2022 at 11:31 am #35418
I wanted to share the update from our newest member, @karene. She shared some of her story in this update and thought some of you may want to read it. At times when we reply to an update versus posting in the topics, it gets missed.
Karen wrote: “Hello! Thank you for having this site of information. I’m still on the emotional roller coaster where one day I wake up full of hope and the next day I cry on and off all day. I don’t have anyone here for support but have a few family members and a close friend that I speak with. However, unless someone actually takes the time to google PAH they have no idea what I am facing physically and how it has changed my life and plans for my future.
As far as meds go, I’m taking Opsumit along with Sildenafil. I had an echocardiogram a couple of weeks ago and then the cardiologist said it was too soon to tell if the meds are working. My pulmonologist is much easier to talk with and I see him every 4 weeks. My oxygen levels seems good and my blood pressure is low. I’m taking 2 different diuretics which are working really well and my edema is almost non-existent. It helps that I work from home and can put my feet up when I sit at my desk.
Unfortunately, living in the desert with the extreme heat can be problematic. On the weekends I make sure I run errands early and get home before it gets too hot but you can’t escape it all the time (I have a doc appt this afternoon when it will be over 100 degrees). And balancing the fluid intake and not getting dehydrated is also a challenge.
All in all”
August 4, 2022 at 11:45 am #35419
Thank you, @karene, for sharing some of your PH journey thus far. It’s not unusual to have those days when you cry and wonder, why me?
Yes, most have no clue about PH, and when they hear hypertension, they assume we have something with high blood pressure. But they don’t know the facts and what’s involved with PH. Educating those closest to us can be challenging, but some listen and want to learn. Do you have anyone who may be closest to you that may want to know about PH? You can always send them here to read some of the forums, stories, columns, and things on our PH News website. PHA also offers free resources and tools for them to read.
Yes, that Vegas heat is horrible. I was in Lake Havasu one summer, and although it was dry heat, I swelled up like a puffer fish.PH, heat, humidity, and often cold air don’t mix well. Also, elevation affects many of us with PH.
The ongoing struggle to balance fluid and dehydration is challenging. I am also struggling with that. I also have chronic kidney disease and am on a fluid restriction, but I also need the diuretics for my heart. I wrote a column on this in the past and will share that with you, too. I’ll also share one that @colleensteele wrote about her son and managing fluids. You’re not alone.
Please know we are here to help support you along this new journey. Take one day at a time. I’m thankful that you have an excellent pulmonary doctor. Is he part of the PH center there?
August 4, 2022 at 12:41 pm #35428Karen EndelmanParticipant
Thanks for sharing those articles. I also have had a potassium issue and will look into foods that are high in potassium as well as vitamin supplements.
Still, sometimes I feel like the more I read the more overwhelmed I get!
When I went into the hospital in May I also found out that I had a mass on my kidney. No symptoms, and nothing ever showed on my annual blood tests! I have been cleared for surgery and am having the kidney removed next month. I’m very nervous about it because of the complications that PAH brings to having anesthesia. My pulmonologist is on top of everything but it doesn’t relieve the anxiety.
August 11, 2022 at 2:44 pm #35532LSandersParticipant
my name is LaDonna S. and I have been diagnosed with PAH! I have been reading in the forums now for a couple of months! Thank all of you that share your info with others! It’s very helpful!
My question is, does anyone on here have PVOD as well that could share info, experiences, etc?? This seems to be more at the forefront of my issues!
August 12, 2022 at 10:07 am #35537
Hi @katesnonnie, we are happy that you have found the forums helpful as you are new in your PH journey. I’m sorry that you feel like the PVOD is more of your struggles. Are you seeing a PH specialist who is well knowledgeable in PH and PVOD?
I have found a few topics about PVOD and will tag you in those so you will be notified. As always, you can always start a new topic if you have a question and can’t seem to find an answer. Colleen and I would be happy to help post if you need help.
I also wanted to share this link from PHA about PVOD.
How are you feeling overall, and which treatments are you currently on for PH? Have you noticed any improvements or relief yet?
We are here to support you on your new PH journey.
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