Hello March- Welcome New Members

[Colleen]

Welcome new members! If you feel more comfortable just reading that is fine and we hope the stories and information shared here will help you. But if you want to join the conversations it will be nice getting to know you. Either way, so happy you found us. We are all PHamily here.

[Terry]

G’Day ,
Guess where I’m from. Yep,I’m from a land downunder. Hmmm should write a song with that line.
Seriously though I’m from Brisbane Australia ( sub tropics).Retired up to here from Melbourne in mid 2,000s .Much like you guys finish up in Florida from NY or wherever.
Up until this horrible affliction was a very active golfer with a 12 handicap and yachtie. Don’t play golf anymore but scaled down to a 22 foot sailboat which I sail solo weekly all year round . Diagnosed with pah last june after complaining I had SOB for three years. My pressure level? was 48%
I was pretty critical of my doc. and told him it was all his fault as I never had any medical issues until he started giving me tablets to take for High Blood Pressure etc. now anything to do with heart or arteries I’ve got. Poor bloke saw the joke eventually.
Current drugs for pah
Macitentan and Tadalafil.
As I said on another post thank you for being here.

[jen-cueva]

Hi @terry, welcome, and thank you for sharing some of your PH journey with us. I already like your sense of humor. My apologies as I replied on Friday; I do not see it here.

Australia has always been on my travel “bucket list.”

That poor doctor, I can picture his face when you said that, lol.

I look forward to chatting more with you. Please let us know how we can best support you.

[jen-cueva]

I wanted to welcome the new members that joined us within the last week or so. This is an amazing group. Thank you all for being supportive of each other. Some newbies like to read, and that is OK, too. When you feel comfortable, you can post.

Please help me as we welcome @caroln, @stillc, @terry, @eboost, and @mknevada.

If you have not yet done so, please share a little about yourself. Here are a few suggestions to help you get 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?

If y’all missed it, @terry already shared some of his PH journey with us above.

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.

[Colleen]

Welcome new members! I look forward to getting to know all of you through the forums.

[Meghan Nevada]

Hi, my name is Meghan – I’m from Texas, Houston area. I was recently diagnosed in Jan 2021 and have been on Opsumit and Tadalifil for about a month now. I’m supposed to be starting Uptravi soon. Getting all the meds approved has been such a nightmare and very confusing, but it seems like things are slowly getting worked out. I’ve also always been very conscious of what I put in my body so going from no medications to a handful of pills every day was an adjustment and caused some anxiety starting out. My PAH symptoms came on pretty abruptly as I was working out 4 times a week, walking 3 miles a day no problem and all of a sudden I started feeling bad starting Sept 2020. I was pretty vigilant in staying on top of my doctors to reach a diagnosis although it took several months, from what I read on the forums so far and from other resources it can take years for some to receive their answer so I was fortunate in that regard. Still would have preferred not to have this condition obviously, but these are the cards we are dealt I reckon. I am 29 years old and this information is still very fresh, but I would say my head-space has improved over these past few weeks. Its still very upsetting and it hits me in waves every so often. My husband and I had just started trying to conceive (no children yet) when we found out. Its been quite devastating, I feel like not only am I mourning for myself, but also for our children that we will not get to have. But like I said, still very fresh for me and I’m not willing to give up on the children front at this point so that is mainly why I decided to join. I want to get more information on what my options are from people who have lived it since there isn’t much out there on the web.

Thanks in advance for the support and for keeping up this platform!

[jen-cueva]

Hi @mknevada, it sounds like you could be my neighbor. LOL, I am between Houston and Galveston.

I know this is all a bit fast and overwhelming. I am happy to hear that things are starting to fall into place for you. I am on Uptravi as well. Do you go to Methodist?

The specialty pharmacy, usually Accredo, are really good at educating on the treatments. Did you have an Accredo nurse visit before your meds?

My heart aches as I read that you were starting to try and conceive. Did you mention this to your doctor? I know most say definitely no, but I know a few PH patients who have had kids. Often, the pregnancy is what caused the PH to show up. I am sending you big hugs. I know there is nothing that I can say to help you as you go through the emotions.

Thanks for sharing some of your PH journey here with us. Let us know how we can best support you.

[Meghan Nevada]

Hi Jen, sounds like it! I will message you pivately 🙂

[jen-cueva]

Hi @mknevada, I will go look now. Thanks for letting me know.

[Terry]

G’Day Meghan,
I am also new to this site and feel relieved to have found it.
Good on you for getting a diagnosis so quickly .It took me three years of complaining that I could not breath with any exertion like walking up one flight of stairs.
Now I’m middle aged (77) so what I say may not apply to you.
I try to look on the bright side insofar as I know what I have and pills can control it.
Actually not knowing what I had actually saved my life . What!you say.
My doctor sent me to a cardiologist for tests when I first complained about sob and it resulted in me being rushed to hospital for a stent in my LAD artery ( widow maker) as it was 90% blocked and I was on verge of massive heart attack. anyway.
I have been on Macitentan and Tadalis since june last year. In my case it took three months to really feel the benefits . I’m not back to where I was before 2017 but can at least function normally . Hell sometimes I’m even tempted to break into a jog during my daily 2 klm walk. The negative for me has been that I have developed deafness in my left ear and tinnitus. I am blaming the Tadalis and will be talking about it with my consultant.
Of course there is always a bright side to it . My better half sits to my left when watching tv and driving. joking, joking. Talking about joking I mentioned to my wife ( are you still allowed to say wife over there or is everyone a person) the other use for tadalis. She did not even look at me ,just said ‘don’t even think about it’ .
Good luck mate.

[jen-cueva]

Hi @terry, I know that Meghan appreciates your welcome. I love that you share your optimism with her, too.

I have to laugh as you ask, are you still allowed to say wife over there, or is everyone a person, lol.

Your wife sounds like she’s accustomed to your jokester tactics, lol

[Meghan Nevada]

Terry, you are a hoot! My husband makes similar jokes about the tadalifil. And that is amazing regarding your LAD artery! God does work in mysterious ways. I try to keep that in mind 🙂 Thank you for sharing.

[Colleen]

@terry thank you for the warm welcome to Meghan and sharing your delightful sense of humor with us. If my dad can still get away with calling my mom his old lady then I think you are pretty safe with wife. LOL!

On a serious note, @mknevada my heart goes out to you. I suggest what @jenc mentioned, I would discuss pregnancy further with you doctor. If he/she isn’t a PH specialist you might want to find one because they can better advise you in this regard.

You have been through a lot. Make sure you take care of yourself both physically and emotionally. We discuss a lot about whole person care in the forums. It’s so important! We are here for you any time. Ask questions, share updates, vent or just read, whatever you need and is most helpful to you.

[Carol Volckmann]

Hello Terry and Meaghan, I know you will receive a great deal of information and support from this forum, I certainly have. I had never joined something like this, but very happy I joined this group. Jen and Colleen are the most caring, up front, full of resources and … so full of love!

I am 77 and was diagnosed with PAH 17 years ago after years of finding the right team who could help after many misdiagnosis. My PAH was caused by Sclaraderma. Like both of you I had never been on any medication and now – my pill boxes are full and I am on Remodulin by IV, Letairis and Adcirca.

The whole thing wiped me out when I was first diagnosed. I guess we are luckier today as the science and medical world have made hugh strides in therapies to keep us going.

I am a yachie too – was a yacht broker for many years in Puerto Rico and Ft Lauderdale, FL. Now we live on the West Coast of Washington.

Meghan, this must have hit you like a tun of bricks, my heart goes out to you and your husband. It sounds like you have found the right team to back you up and help guide you through this. None of this is fair but you don’t have to give up. There is life after this diagnosis and it can be very good.

Please do not hesitate to ask lots of questions and when you need some support, a hug the people in this forum are right there for you! Hugs from the Pacific Northwest.

[Roger Bliss]

New guy here. My Name is Roger and I am from Wasilla, AK. I was diagnosed with PAH last November. I have been short of breath for the past few years. I figured it was a combination of getting old (67) and out of shape. I was told I had COPD at first. Then changed doctors and found I have PAH. At the moment I am on Ambrisenten and Tadalafil, along with a variety of blood pressure and blood thinners.

Along with PAH I have cancer (CLL/SLL a form of Leukemia), Celicac disease and Gerd. All of them are under control and don’t bother me.

I must admit being short of breath gets on my nerves. Just wondering if my breathing will get better with time or am I stuck where I am at now?

[Colleen]

@wheeldog thank you for sharing your story with us. You really have a lot going on but it sounds like you are coping as best you can. But I can imagine there are days when having PH and some other serious co-existing conditions can be really hard. When you have rough days I hope you will check-in with us. We are a very caring and supportive group here.

Being misdiagnosed with COPD is unfortunately a common occurrence in the PH world, but it sounds like your medical team is on top of it now and you are in good hands. I wish I could say your breathing will definitely improve with treatments, but everyone responds differently and co-existing conditions complicate the statistics. Are you using supplemental oxygen?

[Carol Volckmann]

Hi Roger, I was diagnosed with PAH after being misdiagnosed for several years. The first 2 Pulmonolgists told me I had 3 maybe 5 years to live – that was 17 years ago.

I had always been physically active and shortness of breath really did a number on me mentally. I was actually told by those 1st 2 doctors that excersis would not do much good WRONG!

When found the Pulmonolgist who really specializes in PAH told me I needed to excersise as much as I could. My breathing DID get better. Still unable to go up steep hills but with the meds and excersis my breathing is better.

I may be getting older – but never old! I am 77 and plan to be around for many years to come.

I am so sorry to hear of your additional health issues but glad you have them under control. It seems like so many with PH they also have other health issues to contend with. It seems my PAH was actually caused by Sclaraderma.

Living in Alaska cannot be that easy for you as I know breathing in cold air really effects PH.

It does sound like you have found the right team to work with. I hope your meds and some excersis will help you. Sending you very positive energy and a hug too from the Pacific Northwest, WA.
Carol

[Terry]

G’Day Roger, Carol,
Sorry to hear you have PAH Rog. but isn’t good to know you know what is causing your SOB. I was diagnosed in june last year after three years searching for an answer and put on macitentan and tadalafil. I am 77 and to be honest it took me a good three months to feel a noticeable improvement and lose that SOB all the time. Each week I feel that little bit better albiet I have to act sensibly and not try and walk up steep hills etc. My darling is quick to tell me to stop puffing like a dog .I’m sure its a bad habit I acquired before the meds. kicked in.
Carol, mate , fellow yachtie, Went out sailing today and I reflected on how little tasks on board twelve months ago required frequent rests whereas now I just do it .
Today.
Smooth water,10 knots , close beam reach ,25C
Ha I’m lying actually choppy, 20 gusting to 25 ,humid as and 32C . but hell I loved every minute .
I need a lie down .

[Carol Volckmann]

Hey Terry, you really had me going 10 knots calm seas and close beam reach – every sailors’ dream ha! Still it is great that you are out there! Next time you go out, take me along. Keep up that wonderful sense of humor and take a rest when your bride tells you!!

[Roger Bliss]

Thanks everyone for the kind words. I was doing better when I was taking Prednisone, but they took me off that. I walk every afternoon with some guys in the neighborhood. They call us the “Geezer Patrol”. One of the guys is pushing 90 and has COPD. Normally I can keep up with him, during our mile walk, but today I had to stop and catch my breath. I have a Dr appointment on the 22nd and we can figure things out.

[jen-cueva]

LOL, @wheeldog, I love it! The “Geezer Patrol” is so funny. But it sounds like you guys have a blast. Wow, 90 and walking, that is amazing! I am betting that y’all also give the neighbors a bit of pranks. Please don’t overdo it; we would like you to stick around.

Please keep us posted on your upcoming appointment.

[Roger Bliss]

Had a Dr appointment yesterday. I tried Ambrisentan for 3 days. It didn’t work out too well and had to stop. My feet swelled up so bad I couldn’t get my shoes on, got real short of breath and my head chest got so plugged up I had a hard time sleeping. Going to try Bosentan next to see if it works. It will take a while to get approval from the insurance co.

Right now they figure my lungs are working at 30%.

[Carol Volckmann]

Roger I am so sorry to hear Ambrisentan was not for you! The side effects must have been scary for you. I have been on Ambrisentan for years along with 2 other drugs and all 3 have been a great help. I hope Bosentan will work for you, I know it has for many. We are all so different on how our bodies react to drugs. Don’t give up hope there are so many drugs out there now that really do help PH. Hope your insurance gives you the right answers. Do you get any help from grants to help with your co-pays?

[Roger Bliss]

They were more frustrating than scary. I am on Medicare and have AARP as a supplement with their best prescription plan. My cancer meds are very expensive along with the PAH meds. So far, between my prescription plan and grants I have had a 0 copay for the expensive ones. I have a small co pay for regular prescriptions though.

I hope Bosentan works too.

[Carol Volckmann]

Good luck Roger. So glad to here you are on Medicare, good supplement and a grant to help with the costs of these drugs for PAH and cancer! Thank God we no longer have life time limits! ????

[Colleen]

@wheeldog my son was on Bosentan and I don’t recall him having problems with it. I hope it is a better option for you. Keep us updated.

[Roger Bliss]

I am wondering what other drugs people are using for their PAH besides Bosentan and Ambrisentan?

I had a reaction to Ambrisentan and I don’t see Bosentan working out for me. I just found out that I need a liver function test every month or the pharmacy won’t ship out the Bosentan…….and it will cause problems with my cancer meds. I have been waiting for approval for Bosentan since the end of March. I just got approved a couple days ago…….long story.

I am looking for something that is simple to use, as going in for tests every month won’t work out. We travel in the winter and it would make things too complicated.

I would appreciate any advice.

[Carol Volckmann]

Hello Roger, I am sorry that Ambrisentan didn’t work for you. The medications that I have worked really well for my PAH are Remodulin (Trespostinil) this started out subcutaneously for about 14 years until the site became too painful, now I have Hickman IV line (a bit cumbersome but no pain) this drug is continuous. The other 2 meds are Ambrisentan and Adcirca – both oral. The combination has worked well. None of these has required multiple and constant blood/lab work.

I hope your Pulmonolgist is working closely with your Oncologist. Working out what works best for your cancer and PAH must be a real roller-coaster for you. I hope the right combo comes soon for you.

You will be in my thoughts and sending you lots of positive energy!
Carol

[Carol Volckmann]

Hello Roger, I am sorry that Ambrisentan didn’t work for you. The medications that I have worked really well for my PAH are Remodulin (Trespostinil) this started out subcutaneously for about 14 years until the site became too painful, now I have Hickman IV line (a bit cumbersome but no pain) this drug is continuous. The other 2 meds are Ambrisentan and Adcirca – both oral. The combination has worked well. None of these has required multiple and constant blood/lab work.

I hope your Pulmonolgist is working closely with your Oncologist. Working out what works best for your cancer and PAH must be a real roller-coaster for you. I hope the right combo comes soon for you.

You will be in my thoughts and sending you lots of positive energy!
Carol

[Carol Volckmann]

Roger, forgot to let you know we travel a great deal and the special pharmacy sends all my supplies wherever we are. We found the best system is to have them send everything to the nearest UPS store and has worked all across the country.

[Roger Bliss]

Thanks for the information. We have a place in AZ so having an address will work out. All 3 of my doctors have the others cell numbers and work together. Every once in a while something slips through the cracks.

How was the Remodulin (Trespostinil) administered? Was it some sort of pump? I spend the summers working construction bouncing around in a dump truck. In the winter we ride motorcycles around the south west. Would it be possible to use this drug under those circumstances?

[Colleen]

@wheeldog oh no, I’m so sorry you are struggling to find the best treatment for you. Ditto to everything the always helpful @cdvol3gmail-com shared and suggested. It is so crucial that oncology and pulmonology work hand in hand when treating you and making decisions. Hopefully they are already doing that.

I am going to start a topic about Cancer and PH meds. Hopefully it will inspire other members to comment or maybe bring in some new ones with this experience.

Please keep us in the loop about how you are doing.

[Roger Bliss]

I stopped by the other thread, good idea…….thanks.

All 3 of my doctors work well together, so that isn’t much of a problem.

I am sure this will get worked out. My lack of patience is my biggest problem. I am on lots of different meds that seem to work well, PAH, blood pressure, blood thinners, gerd, cholesterol, cancer and shingles. It gets complicated trying to add a new one that doesn’t conflict with the others.

[Colleen]

I can only imagine the struggle @wheeldog. I’m sorry you have so many medical concerns battling each other. Glad to hear you have confidence in your team of doctors. That is so important! Keep us updated on how you are doing. We are here for you.

[Roger Bliss]

They are going to try me on Tyvaso. We’ll see how that goes. Next week they are going to drain the fluid out of my lung. Hopefully that will help my breathing too.

[Carol Volckmann]

Hi Roger, when I first went on Remodulin it was delivered via SubQ (subcutaneously) with a small pump that I would clip on my belt. The site of the cleo that stuck in my tummy either left or right side – the site would become painful so then you switch it to the other side making sure you are no less than 2′ away from your navel. The special pharmacy sends out a nurse to go over how to use this and how to keep everything sterile. Supplies are sent out and you have to put a new cassette every few days …. nurses will go over all of this very carefully. When you first insert the cleo your site can be quite painful but that will subside. I had SubQ for over 14 years until it became too painful and was switched to the Hickman IV central Line – no more pain, but you have to be VERY careful of infections – this is an open site (I cover it with an AquaCel Foam, but some folks don’t). This line goes in up by your neck and the line goes inside you up to a vein in your heart. Outside is a long line that goes to a larger pump that a cassette is attached to, I wear mine in a fanny pack. Again nurses will walk you through all of this and they are only a phone call away 25 hours a day (they are fantastic) every day.

If you want to find out more, please do talk with your team first and you can also go on line even go on You-Tube will walk you through this. You have a great deal on your plate right now so do talk with your team to see what would be best for you and would not interfere with your other meds. I am not a very patient person myself, but I have had to learn to slow it down and do what has to be done for my quality of life. I am now 77 and plan to be around for a very long time!

Good luck Roger and please know there is a great deal of support for you out there!
Carol

[Roger Bliss]

Thanks for all the info. I appreciate you taking the time to respond.

Had a doctor appointment today. He didn’t want to put me on Remodulin as he is worried about infection from the needle site. We are going to try Tyvaso. It’s an inhaler that I take 9 puffs 4 times a day. Still have to check with my oncologist to make sure it will work with my cancer meds. Hopefully, it will and I can get it fairly quick.

[Carol Volckmann]

Good morning Roger, I really hope Tyvaso works well for you. I wanted to go on it, but the dosage would be way too high for me to handle compared to the Trespostinil dosage that I am on. Wishing you success with the Inhailer!
Hope you are going to do something special for yourself this weekend! ????

[Roger Bliss]

Thanks!! It’s mothers day weekend. Ill do whatever the wife wants to do….it’s her day.

[jen-cueva]

Aww, @wheeldog, I love that you were already geared to do whatever the misses want to do. What did y’all end up doing?

Thinking of you and sending you positive vibes this week as they drain the fluid from your legs. Please keep us posted on all of your appointments. You are one busy man.

[Roger Bliss]

Thanks for the positive vibes…..can use all I can get.

Mothers Day pretty much started out normal…..I made breakfast, gave her flowers and candy. Then she wanted to go to Costco. Turns out she made an appointment for me to get my hearing tested. Guess she was getting tired of me saying “HUH’, “What?”. Then there’s the matter of loud TV along with everything else that goes along with living with someone who is hard of hearing. She also got to shop alone while I was being tested, which was another plus for her. It turned out my hearing was bad, “big surprise”.LOL They had a set of hearing aids in stock and stuffed em in my ears and off we went home. She was able to talk to me in a normal voice. Then she told how that was one of the best Mothers Day presents she ever got. Now it’s gonna take me a while to get used them. I think she got used to them right away.;-)

[jen-cueva]

Hi @wheeldog, I love your wife! It was Mother’s Day, but she was looking out for her man. I am so happy that you got the new hearing aids, and they are helping. I can imagine that your home is a tad bit quieter now.

Costco shopping alone, oh I would be in big trouble, hehe.

It sounds like she had an awesome Mother’s Day, and you did, too. Y’all sound like such an amazing couple. I love your stories.

Keep us posted on your week. Tell the wife that she has an admirer in Texas. 😀

[Colleen]

@wheeldog funny, my mom and dad just went through a very similar experience this year. My dad finally got hearing aids. It was no surprise to the rest of us that his hearing was very bad. But, my mom needs them too and won’t admit it. She still needs the TV loud and my dad doesn’t…it creates some grumpy parents sometimes when I call to check-in on them.

[Colleen]

@wheeldog I just read that they will be draining the fluid from your lungs next week. What I have heard from other patients who had to have that done is that it helped their breathing a great deal. Fingers crossed it will be the same for you!

[Roger Bliss]

Thanks!! I had it done a year ago. They drained out 1.2 liters. It made some difference, but not a lot. There isn’t much this time, they just want to analyze it and see which disease is causing it. Last time it was caused from the cancer.