Help Us Welcome Our New Members in 2023

[jen-cueva]

This week, please help me welcome our newest members. Welcome to the PHamily, @katylynn143, @amit-ramsinghani, @joannes, @evon, and @bamagramma.

Please share a little about yourself. 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?
*Would you happen to have any questions for our members?
*You may want to share your best PH tip with others.

We are so excited to have you here and look forward to hearing your stories! Please don’t hesitate to contact @colleensteele or me if you have any questions about the forums. We are here for you! ????

[Charlene Rains]

Hello! I am Charlene and I live in New Hampshire.  In December I was diagnosed with idiopathic PAH.  I am overwhelmed to say the least.  I am from Mobile, AL and the grandma to 4 precious grandchildren.  Hence my username, BamaGramma. I moved to New Hampshire 3 years ago to live with my daughter and her family.  My son and his family live in Michigan.  Thank you for the welcome, I look forward to being part of the PHamily.

[Colleen]

I’m so sorry you have been diagnosed with IPAH @bamagramma but so glad you found the forums and joined. My son also had idiopathic PAH. What treatments have they started you on and do they seem to be helping? We will be here to support you as best we can!

[Charlene Rains]

They have started me on Ambrisentan, Tadalafil, and Uptravi. They have caused some fluid retention and the shortness of breath that comes with it.  Until we get the diuretics adjusted and the fluid under control, I can’t tell if they are helping.

[Colleen]

@bamagramma getting the meds balanced and side-effects under control can take time. Don’t give up hope! Sometimes it can take months to notice improvement. Keep us updated and let us know if you have any questions or concerns that some of our long-term patients might be able to help you with.

[jen-cueva]

Hi @bamagramma, as @colleensteele shares, it usually takes time to find the best treatments for our bodies. Each of us is so unique. Then those pesky side effects must balance out as our bodies adjust to these new treatments and our new “normal.”

Hopefully, yours will balance out soon, and you will notice some relief. I know for me, I’ve been on those 3 treatments at different times, still on Uptravi, but the Letairis (ambrisentan) caused me the most increased fluid retention. Do you also take diuretics, or have they not started them yet?

Please keep your PH team updated on how things are going and try to listen to your body. You know best when something is not working, but again in time. Thanks for sharing, and please keep us posted on how things are going as you adjust to these new treatments.

[jen-cueva]

We have two new PHamily members who have joined us. Please help us by welcoming @marie and @miss-whitneyj to our close-knit PH forum.

Marie and Whitney, please share a little about yourself. 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?
*Would you happen to have any questions for our members?

We are excited to have you here and look forward to learning more about your PH journeys. Please don’t hesitate to contact @colleensteele or me if you have any questions about the forums. We are here for you!

[Colleen]

Welcome @marie and @miss-whitneyj! I’m looking forward to getting to know you and hope you will feel at home here with all of us.

[jen-cueva]

I wanted to share a little about new member @katylynn143 here, which she shared in an update.

Katy has PH related to blood clots (CTEPH). She is having PTE surgery next Monday. She says, “am so grateful
that there is a cure for what I have so in that sense I am excited. On the other hand I am absolutely terrified. It is open heart surgery and I am a high risk patient for a few different reasons. One being the location of the clots being removed, as I understand it a huge section of my lungs has been unused for a long period of time and the doctor is concerned that my lungs may flood which would make it hard to take me off the breathing machine. Second reason being that I have cirrhosis of the liver. Now this is not 100% conclusive. Even though all tests that I have been given shown that I do have it, I haven’t had a biopsy. So before I go through surgery they are going to test me for that. Having cirrhosis could potentially be a reason to not perform the surgery on me. So I’m praying everything goes ok and I check out. I’m not getting any healthier. They just found an enlarged duct in my stomach that they can’t look further into that because my heart failure doctor wont allow me to be put under any anesthesia for the upper endoscopy needed.
With all this going on I am so grateful for my daughter. She helps me get out of myself. When I’m out playing with her I don’t run out of breath as easy, I can go on longer walks. I forget I’m sick. I pray that I am able to be a mom full time again. She really needs me, I feel like if she was with me her behavior would be a lot better, and I just have so much love and compassion for her that it’s overwhelming.
All I can do is pray at this point.

How long have u been diagnosed with PH? 18 years of water pills?!? Wow! Where do u mostly retain your fluid? I retain in my stomach. Before water pills I have a picture of myself where I look like I’m 8 months pregnant. I got so tired of everyone asking “when are u due?” Actually it was a nightmare. How do u cope with having this disease? What keeps you going? Do u have kids or family around?

Let’s welcome her and offer her our positive thoughts and prayers are she awaits her PTE surgery.

[Colleen]

@katylynn143 thank you for sharing your journey with us. I’m sorry you are facing so many concerns. We are here to offer you emotional support and offer you hope through personal exereience.

For example, @tervo is a CTEPH patient and underwent successful PTE surgery. Maybe she has some advice she can share with you.

You will be in my thoughts and prayers on Monday!

[jen-cueva]

Hi @katylynn143, I’ve had you on my mind and wanted to check in and see how things went with your PTE surgery. How are you doing? Did you have any problems with the surgery or post-surgery?

Please check in when you’re up to it and let us know how we can best support you.

[jen-cueva]

Hi @katylynn143, thanks for sharing more about your PH journey and concerns. I bet you are ready to get some relief and be the mom you want to be. How old is your daughter?

Where do you have your surgery? Do you have a knowledgeable medical care team? Yep, it’s always more complicated when we have other coexisting health issues with PH. Surgery is always risky for all, but with the right care team, all will work out fine.

My daughter was 11 when I was diagnosed with PH. Yes, today, 18 years old, I was diagnosed. I was talking to her, and she said she remembered Valentine’s Day when I was in the hospital, and she and my hubby went shopping for me.

Like you, I pray tons! Some days, that’s all I can do. Yes, this new journey can be overwhelming but know your daughter will continue to love and support you with PH after your PTE surgery. YOu are her mom! I bet you do a fantastic job, even with all you have on your plate.

Yes, I, too, retain the fluid in my belly. I also tend to have it in my hands, ankles, and feet. I can relate to that 8 months pregnant look and feeling so stuffed. It’s uncomfortable. Thankfully, it’s not as much as it was when I was diagnosed. With proper medication and treatment, things can improve. You will have better days and then not-so-good days. We all do, but with hope, the love of close family and friends, and prayers, you can get through this.

Remember, you are not alone. Reach out to people who have been through similar experiences and ensure you have the support system you need. Do you have anyone nearby that is part of your support team?

I hope others can offer you advice on your PTE surgery. @mamabear007 went through this with her son and is a great inspiration for others by sharing how well her some is doing now. We are here to support you as you prepare for your complicated yet hopeful surgery.

[Terese Tuohey]

@katylynn143 This is a biggie!  I had PET surgery 3 years ago and it really helped.  I was scared out of my wits before the surgery, but actually going through it wasn’t so bad, and now, I am only on oral medicine (TADALAFIL AND OPSUMIT) to control what couldn’t be gotten out in the surgery.

I too had other issues (asthma and a bit of COPD), so I understand your concerns about your other problems.  May I suggest you consider joining the national PAH-CTEPH support group?  It has been very helpful for me to talk with others directly (via Zoom) that have the same condition.  It’s a once-a -month meeting om the 3rd Tuesday at 8PM.

If you want to talk more, you can contact me through this forum, or email me at [email protected].  Identify yourself in the subject line, please.

I’ll pray for you that your surgery goes smoothly.

[jen-cueva]

Hi @tervo, thank you for your loving support and for sharing your experience with CTEPH with @katylynn143. I know she will gain some hope from your story and comfort.

Yes, the PAH-CTEPH group is amazing. I hear the patients who attend enjoy it. Here is a link for that. It looks like the next one is on 2/21. You can click the date and event from their calendar to learn more.

Again, you are such a kind and supportive member; thanks, Terese, for sharing your experience and comforting words.

[Debbie Moore]

@katylynn143 welcome to the group!  I’m so glad you are praying!  That seems to be what keeps my head straight.  If I take my eyes off Him and look at my issues, I’m in a mess of trouble.  I’ll be praying for you because my God can bring you comfort, peace and decisiveness. Leave it all in His hands.

[jen-cueva]

I want to take a few minutes and welcome our newest members to the PH News forum. Please share a warm welcome to @brooklyn68, @syang13, @pryabaumy, @luvy22, @pcarr, @christines, and @phyllisk.

If you would like to share a little about yourself, 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?
*You may want to share your best PH tip with others.
*What are your favorite hobbies?

We are excited that you have joined us and look forward to learning more about you and your PH journeys. If you have any questions about the forums, contact Colleen or me.

Have a wonderful weekend, y’all!

[Patricia L Carrion]

Hello my name is Patricia I have been on this pulmonary journey for almost 3 years now, I am currently only taking 1 calcium channel blocker, I also have RA and treatment for that has lead me onto biologics. I do have Svt however we don’t know if it’s related to the PH, or a separate issue because when I was much younger I was treated with beta blockers to slow down my heart, I meet with a electrophysiology cardio dr soon to see about pots. I have only been diagnosed through an echo. I live here in California (not anywhere fabulous though) it’s always hot here. We really only have 2 months of cooler weather then it begins to warm up, summers are a time I don’t even want to leave my house. I have a very supportive husband, I have a beautiful daughter that happens to be on the spectrum that I homeschool, sometimes my conditions make it hard to be so present and available to her needs all day long. My hobbies are usually coloring, gardening when weather and health allow it, I love training my German Shepherd when I can, I do like to cook with my husband, I do play video games I grew up in the Atari and Nintendo era. And of course family movie night marathons.

[jen-cueva]

Hi @pcarr, you have a plate full of medical struggles. How do you balance it all with life and being a mom?

I’m inspired and in awe that you homeschool your daughter. I know that can’t be easy, especially on days when these health issues kick in and play against open another.

I hope you can get in and be tested for POTS soon. Waiting for a test and then the results can be frustrating.

What types of things do you garden? Edibles?

I’m grateful you have a supportive husband and a full life, including your german shepherd.

Thanks for sharing a little about yourself. Movie nights and snacks with the fam are the best laid-back fun times; we can enjoy that in our PJs;)

[Patricia L Carrion]

I don’t think I balance life very well, I used to be more active, but lately get winded and out of breath very easily. On days that I feel worse I rely on teaching subscriptions and apps that my daughter can do while I lay down and rest (she calls it bed learning), but the thing that helps is being organized, and having all my daughters learning stuff cataloged and ready to be pulled for her lessons.

this year I’m hoping to do more gardening, but my daughter and husband usually do it. I prefer to tend to my herb garden, and I plant lilies, but my husband wants to grow everything under the sun.

Oh the edible is a pot gummy I had talked to my rheumatologist and primary Dr to see if it was a better option then painkillers and got my medical marijuana card. It really worked when I finally found the dosage combination and strain. There is a huge stigma about pot for pain management, my motto is whatever makes you function without pain or with less pain, but I can’t anymore because my svt.

[jen-cueva]

Hi @pcarr, it sounds like you are more balanced than you realize. Having your daughter’s lesson plans organized so well must be helpful. I find that when I am organized, my day is much better.

I was super organized before COVID but now struggle to return to that organization level and routine.

In our house, I had some herbs in those large wooden tubs. I had cilantro, basil, parsley, and a variety of peppers. In the other one, I had grape tomatoes. Like your husband, I would prefer to garden all my food if possible. I grew up eating from my grandparents’ gardens. I wish I had that option now, especially with the skyrocketing prices at the grocery store.

I have heard some find relief from marijuana (pot) gummies. Pain relief and anxiety have been the most popular. I tried a gummy, but it made me feel weird, so I tried them. It was the lowest dose, too. I had found a pain patch on time that worked some but then could not get it in Texas. You’re right, such stigma surrounds marijuana, but I agree if it works, it often offers fewer side effects than traditional pain medications.

Thanks for sharing, and make sure you take time for yourself and rest, my PHriend.

[Sonia]

Hi all! I’m Sonia from Malaysia. I’m a Still’s disease – multiple sites patient since 2005, PTSD. I have just been diagnosed with Pulmonary Artery Hypertension last week after a right heart catheterization procedure with ongoing symptoms since Nov 2022. Am currently on Sildenafil and Opsumit.

Sleeping has been so difficult! If anyone can share any tips, it would be great!

[jen-cueva]

Welcome, @syang13; I’m grateful that you shared some about yourself. How long have you been taking sildenafil and Opsumit? Was that also started in November? Have you noticed any improvements yet? I know getting the best treatments and dosages for our bodies often takes time.

Do you sleep with oxygen? Is your sleep interrupted because of your breathing? If so, adding a few pillows to elevate your head may be helpful.

If stress and other reasons keep you up at night, I suggest you ask your medical team for suggestions. Hot tea, warm baths, and a night routine are often helpful. Lack of sleep makes the days that much harder.

Thanks for sharing a little about yourself. Welcome again!

[Sonia]

Hello. I started Sildenafil and Nifedipine earlier with Norvasc but it didnt help much until I started on Opsumit. But because i’m am Adult’s onset Still’s Disease patient, there are a lot of complications here and there as well. My body doesnt really react well to medicines.

 

Been have bilious vomit, diarrhea, myalgia because of Sjrogen, now cold sores here and there as well.. life has been difficult trying to adjust to medications alone.

 

I still cant find the right sleeping position, regardless one or 2 pillows. Often get my attacks at night and a lot of interrupted sleep. Am currently not using any oxygen as I’m trying to first adjust my medications and still trying to adjust to all these new change of lifestyle, pains, adjustments.

I’m on Stillnox and Xanax at night but it still doesnt help me get proper sleep due to PTSD. So, there’s really a lot going on and having to adjust to.

 

Thank you for having me here. Just scared and would really like to know more about this condition and how to improve the situation.

[jen-cueva]

Hi @syang13, I’m happy that since starting Opsumit, you have noticed some improvement with your PH. However, with your Still’s disease, Sjogren’s, and PTSD, things are challenging to manage.

Oh no, those GI struggles, and muscle aches and pains must be horrible for you. I hope you can find some relief soon.

Maybe at your next mental health appointment, you can share what you have on your plate and that not sleeping and resting only adds to your symptoms. Do you have a talk therapist to help you navigate some of this, by chance?

We are here to help support you as we can. My top suggestions are below. I bet others will add to their suggestions to help improve your journey with PH.

*Find a trained PH specialist
*Listen to your body and take notes on any new or worsening symptoms
* Talk about your concerns with your medical team and your family and loved ones(including g us here)
*Rest after each task
*List your medications, diagnosis, and doctors, including how to contact them. Have this on a piece of paper, on your phone, or somewhere it is always available. I also include my allergies and update mine every few months if any changes occur.
* Learn all you can about your chronic and rare diseases; you are off to a great start by joining the PH forums
* Be your best advocate, you are in charge of your body, and your doctors are there to help you. Build a trusting relationship with them

There is a ton more; I was diagnosed 18 years ago, but I won’t keep going as I am hopeful others will offer their tips, too.

For anyone wondering about Still’s Disease, check out the link below for more info.
Still’s Disease

Thanks for sharing, Sonia; it’s normal to be frightened by another complicated diagnosis of PH. Please let us know how we can best support you.

[Sonia]

Thank you so much Jen.

Yes, I’m currently seeing a psychiatrist and psychologist as well trying to manage my PTSD as well because my dad molested me ever since I was 3yrs old and have only recently talked about it in 2017. All these years of trauma snd fear has also added on stress and anxiety to me mentally and physically.

Getting flashbacks and nightmares, bad dreams causing me to have difficulty in breathing as I sometimes dream my dad would strangle me. Waking up short of breath or choking and my “self defence” in my dream ended up to be me sleep walking down the stairs or sometimes bruising myself here and there.

Last few days, after starting Opsumit and Digoxin, I’ve had pretty bad upset tummy and because I was told I needed to cut down on my liquid intake – i usually drink 4litres a day, i was asked to cut down to 2litres (super difficult!), I’ve been dehydrated, getting cold sores around my mouth, and slight pain when i urinate. GAHHH! 😭

Considering I’m from Malaysia and it’s summer all year round, my Sjrogen has been bad. Myalgia all over my neck, shoulders, wrists, and lower back topped with my Rheumatoid Arthritis getting severe jointaches on my fingers as well. All these symptoms are slowly trigerring one another and it’s such a painful long difficult journey.

My hands have been weak, I can lift things but I can’t seem to open any containers or even twist or bend my wrists to do anything. Washing plates, opening containers, or even popping my pills from the film coated packaging is difficult.

But I’m grateful for this community, to be able to share.. because I’ve not been able to accept it in real life and have yet to share with anyone. Been resting at home recuperating physically and mentally.

Was admitted to the hospital for 3weeks and just got home last week, had multiple tests even right heart catheterization with 2dual catheters because my cardiologist and Rheumatologist suspected my prrssure would be high and better to just get a confirmed diagnosis.

Tiring and mentally exhausting but I’m sure all of us PAH/PH patients can fight and go through this journey together.

[jen-cueva]

Hi @syang13, my heart aches for you as PTSD as a young child had to be challenging and horrific to carry since the age of 3. I’m sorry you experienced sexual trauma as a child. I’m grateful that you are seeking help from trained professionals.

Many here have experienced some PTSD. @dawnt and @brenda@brendad53 are two who pop into my head that have shared their mental health struggles. I struggle with anxiety and PTSD related to traumatic hospitalizations. Please know we are a safe community where you can share; I’m happy you feel comfortable sharing with us.

Two liters of fluid is challenging, and I don’t have Sjrogren’s. I know that causes dry everything pretty much. If you feel dehydrated, you should let them know, and then maybe you need 2-3 liters and see how that goes. When we were in Texas, it was hot and humid; I struggled during those warmer months with maintaining my fluid restruition.

It sounds like you have a great team; your rheumatologist and cardiologist are looking for ways to help you best and have your best interest.

It is overwhelming, especially with all on your plate to balance. But we are here and know you’ll have better and not-so-better days. Thanks for sharing your story, and I hope the forums continue to be a place you find support.

Enjoy your weekend.

[jen-cueva]

Happy March y’all. Is Spring in the air in your area yet?

Please help us welcome our newest PH forum members. Welcome to the PHamily, @danuta33, @classy752, @classy52, @pisana, @nanaof2boys, @dkny57, @honestron, and @scuttlebutt1955.

If you haven’t yet, please share a little about yourself. Some suggestions are below.

*When were you or your loved one diagnosed with PH?
*Are you seen by a PH specialist?
*What area are you In? This helps us connect and may lead to meet-ups. These are always fun.
*Which treatments are you currently on for PH?

We’ve been there and know how isolating and overwhelming this can be when newly diagnosed. We have several who have a new PH diagnosis and need our support. Let’s help support them by welcoming them and sharing our experiences.

Welcome aboard, y’all! We are excited to learn more about you and your PH journey. You are not alone.

[Colleen]

Welcome new members! Don’t be shy. If you just want to vent – we are here to listen. Need emotional support – we have lots to offer! Have questions – we will answer them as best we can. Want to share something NON-PH RELATED such as a celebration, goal achieved, disappointment, aggravation, whatever it is we welcome updates of all kinds. We care about the whole person, not just the PH part.

[jen-cueva]

Excellent points, @colleensteele, We discuss some of everything around here. Life with PH is about living our best lives; not all are about PH. We do have lives. We encourage y’all to share whatever is on your mind, well, maybe not all of those thoughts, hehe.

But we love to learn more about you, your families, loved ones, hobbies, and those little victories, whatever that may be for you. <3

[DeLois Tweedy]

Thanks to Jen and Colleen for their warm welcome and wishes.  I am new to the forum part of this site and still have trouble maneuvering, but how the kinks will get worked out soon!

To answer some questions, and give a little bio, my name is DeLois but everyone calls me Dee; except of course my precious grandchildren who call me Nana.

I am a patient who lives in Virginia. I was diagnosed in 2020 by my cardiologist. I found myself in heart failure at that time, and really don’t know which came first. I do know that both diagnoses aggravates the other, and my symptoms seem to be much the same: chronic fatigue, shortness of breath (especially upon exertion or walking very far), and edema.

I basically balance life by doing all the things I know to do to keep the symptoms at bay. I know there’s no cure for heart failure or PH. It definitely is an everyday chore, but has become my “new normal”.

I have a good support system, with my daughter being my earthly angel. She helps me sooooo much, doing physical tasks, emotionally, encouragement, and just by being my best friend.

At this point, I’m not on PH medication, but I take a beta blocker and abt 7 other meds for my heart. I also use a cpap at night. I have to sleep in a recliner, laid back as much as I can tolerate.

To go way back, I had Hodgkins Lymphoma in 1977, and had radiation therapy to my neck, chest, and upper abdomen. I have know for years I would eventually need heart valve replacements, and have learned that my lungs were affected as well. – late effects of radiation. I had aortic valve replaced in 2020 through TAVR procedure. The 24th if this month I will have another echo (every 6 mos.) and see cardiologist to move ahead with mitral valve replacement. I had a right heart cath in Dec to determine lung pressure more accurately.

[jen-cueva]

Hi Dee, and @deetweedy, thanks so much for sharing about yourself with us all. We love having new members and getting to know y’all, so this helps.

My young adult daughter called my late MIL Nana, so reading that your grandkids call you that warms my heart. Nanas are so special. We miss her dearly. How many grandchildren do you have?

I LOVE how you speak so dearly of your earth angel daughter. Is she your only daughter? Daughters are blessings from above, too. Of course, I only have one child, a daughter, hehe.

That’s excellent how she is also your best friend and there to help. My daughter and I are close too. We would be like that if she were close by. I miss her dearly but also know as a young married woman; she is learning to spread her wings. I appreciate her, and we talk most days, if not daily. It was more than once per day until she started working more outside the home recently.

You certainly had your share and then some medical struggles, my dear PHriend. Besides your lovely family and attentive medical care team, how have you managed?

Is your Echo this Friday, March 24th? We will be sending you positive thoughts and light your way. Please do keep us posted on how things go. I’m grateful that your cardiologist is keeping close tabs on your Echos.

If you have trouble maneuvering the forums, please do not hesitate to contact Colleen or me. We are happy to see how we can help.

Thanks for being so kind and so vulnerable by sharing your story.

[Colleen]

@deetweedy “Dee” I love that you jumped right in and shared your story with us! You have been through a lot medically in life haven’t you?

When you mention heart failure and PH I am a bit surprised you are not on a PH treatment yet. Are you seen by a PH specialist? I’m just wondering if a PH treatment might improve your quality of life a bit more.

It is wonderful that you daughter is so helpful. What types of things do you both like to do together that isn’t PH related?

I’m looking forward to hearing from you again.

[DeLois Tweedy]

Jen – your response to Sonia on March 1 with the list of suggestions for PHers on their journey was spot on and so helpful. I already do these but could do better with resting after each task (hehehe) and need to update my info sheet (with new docs added, etc) to my list I carry with me. I bet you have many more suggestions since you have lived with PH for years. Thanks!

[jen-cueva]

Hi @deetweedy, I’m happy you found the information shared in the forums helpful. I know some advice is easier said than done, my PHriend. I am guilty and pushing my body, but not like I did before.

Rest is essential, as you will find. I’m sure you already listen to your body dealing with various medical challenges through the years.

Don’t you think after one difficult diagnosis and we survive, that should be it? That would be nice, but not always the case, unfortunately.

Yep, I have learned many tricks through the years, but I also learn from newer diagnosed patients who may have found a trick that I find helpful for me, too. We learn from one another and together often. But I appreciate your kind words.

[jen-cueva]

Hey, y’all, please help us welcome our newest members to the PH News forums.

Welcome to the PHamily, @deetweedy, @denysebrowne, and @greatlifetoday. Dee has already shared some information about her journey with PH and other personal information.

If you both, Deni and Hilda, wish to share a little about yourselves, we would love to get to know you better. 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?
*You may want to share your best PH tip with others.
*What are your favorite hobbies?

We are excited that you have joined us and look forward to learning more about you and your PH journeys. If you have any questions about the forums, contact Colleen or me.

[Colleen]

Welcome new members! What is the biggest questions/concern you have right now if you are recently diagnosed? If you are a long-term PH patient share one tip that has been most helpful to you throughout your PH journey.

[jen-cueva]

Hi @colleensteele, excellent questions for those newly diagnosed and those who are long-term PH patients.

As a long-term PHer, I would say when I was first diagnosed, I read everything I could find online. That’s not always the best idea. Using credit resources to learn about PH from our medical care team is best. I suggest using sites and forums like this at PH News and PHA. Both are credible sources, and other places are major hospital systems like Mayo, Harvard, UCSD, UPenn, and Cleveland Clinic, all of which I know offer a PH center.

Knowledge is power if we learn it from credible sources. Also, it’s great to connect with others within the PH community and share experiences but remember not to compare yourselves and feel frustrated. We are all at different stages, and various treatments and other coexisting illnesses come into play.

The PH News forums here are one of the most close-knit communities, and I have found the members to be supportive and helpful tips despite my 18 years with PH.

[jen-cueva]

Hello June! Watching our close-knit PH community expand as we manage PH is wonderful. Our forum has welcomed several new members in recent months.

Please help me welcome the following new members to the PH News forums. Welcome to the PHamily, @mm7232, @lboesen, @rivegauche610, @darkstarr, @mel-in-france, @marlenedavey, @kathymc1, @forcolin, @rhondaivy, @ahund1, and @elegiamore.

We’d love to get to know you better! Can you tell us a bit about yourself? Here are some tips to help get the conversation 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?
*Would you happen to have any questions for our members?
*You may want to share your best PH tip with others.

We’re thrilled to have you on board and are here to support you as we PHight together and persevere.

[Rivegauche610]

Kevin Smith, Rochester NY. I’m a patient. We moved to Rochester from northern Vermont in 2020 because there wasn’t any real experience with PH up there and my wife found that University of Rochester had two MDs with specialties in PH, plus I was born in Rochester in 1960. We are both disabled veterans and the VA provides us with our medical care both inside the system and outside, via “Community Care,” and thus it is the way I am able to be a patient of a nationally-known PH practice.

The conclusive diagnosis was made by a cardiac LPN at the Vermont VA Medical Center in White River Junction in August in 2018. She told me “I’ve done many echocardiograms in my 40 years as a cardiac LPN, but seen very few cases like yours, and I know exactly what it is: you have a condition called pulmonary hypertension. It is incurable but can be managed with medicine.” BOOM.

I previously took for two years and am now again taking Orenitram b.i.d. titrating up to 3 mg followed by a single dose of Tyvaso before bed, with enough lead time for the coughing. Two months ago or so I switched from Orenitram to Tyvaso DPI to see if Tyvaso would not affect my nose, hopefully not congesting it the way Orenitram did and only at night, exasperatingly enough. I surmise that the vasodilation effect of Orenitram is partially systemic, and the capillaries of the nose are tiny and susceptible, apparently (and I had turbinate reduction  surgery in April 2022 … two weeks before chemo…). So it is with me. Tyvaso, however, allowed me to sleep uninterrupted 7-8 hours once the last-dose coughing stopped. As Dr. Lachant predicted, being targeted, Tyvaso does its work without collateral effects at other parts of the body, although I started to feel some once I got to 80 mcg q.i.d.

My plan now, since I have a lot of Tyvaso left in the fridge, is to do Orenitram during the day and Tyvaso at night and see how it goes. Last year, while doing chemo for Hodgkin’s lymphoma (which I beat thanks to a great team of oncologists at the Wilmot Cancer Center of the U of R MC), I had a lot of trouble sleeping, not because of chemo (I had a mild cancer and the chemo levels were concomitantly lower than with other cancers) but because of the peculiarity of Orenitram as it affected my nose!

I also take Adempas 1.5 mg t.i.d, but if we go forward with the Orenitram + Tyvaso regimen, we will remove Adempas and re-introduce Tadalafil 20 mg. This should also make the regimen more palatable in terms of the VA and Tricare.

The most encouraging news I have heard in my PH journey, though, is about Sotatercept. This new drug, which just finished its third clinical trial earlier this year, should eventually be available. It targets a specific chemical in the body which directs the pulmonary arteries’ and capillaries’ creation of vascular cells – and keep producing them, causing thickening and stiffening of the vascular walls, which is what a type of PH actually is. Sotatercept stops that process and allows the body to regain control of this cell creation process. I suppose you could say, for this particular kind of PH, it is indeed a cure. Dr. Lachant tells me that I will probably only need Sotatercept and none of the other PH meds. Sotatercept will be a subcutaneous injection given every few weeks, I understand. I doubt one will be able to self-medicate in this case, but I may be wrong.

I have no questions, and I would advise anyone to do as much reading as possible and specifically in NIH and medical-professional documents and journals about clinical trials and about the individual medications and research into others. This is how you become a knowledgable patient and an active participant rather than a passive recipient. If you are anywhere near Rochester, NY, I couldn’t give a more positive and sincere recommendation than for Dr. Daniel Lachant and Dr. James White, the PH pulmonologists here.<span class=”Apple-converted-space”> </span>

https://www.urmc.rochester.edu/people/27632109-daniel-j-lachant

https://www.urmc.rochester.edu/people/23070523-r-james-white-iii

[jen-cueva]

Hi @rivegauche610, and welcome to the PH forums. Thank you for your service, too.

You have had quite a journey with PH and beating Hodgkin’s lymphoma! I’m happy to hear how well you are cared for at Rochester. You’ve found an excellent team that works well with you.

Yes, that new drug, Sotatercept, looks promising for many. I’m hopeful. Check out these articles by our News team on this treatment.

We also have shared a post in the forums about this upcoming treatment. See the link below.
Can Sotatercept Help Improve Exercise Ability

Thanks for sharing your PH journey. We look forward to seeing more of you and supporting you as you continue to manage PH.

[jen-cueva]

Hey July! I hope you’re all keeping cool and relishing the incredible delights of summer. And speaking of joy, we’re always over the moon to welcome new members to our PHamily in the forums. Let the fun begin!

Please help me welcome our newest members, @heidimarie, @cathdellameagmail-com, @patriciamcd, @kiwione, @wendilee, @margoinmaine, @maryann-wintersgmail-com, @cautious, @raya, @ladyvette, @janneke, @lovely, @ihavehope, @mthomps66, @williamslj253,@karilou, @tiggy, @sevo.

We’re thrilled to have y’all join us! We would love to hear a little about yourself if you haven’t already. Below are a few suggestions to get you started.

*Where are you from?
*Do you have PH or know someone who does?
*Are you on any PH treatments?
*What do you enjoy doing in your feel-good time?
*Do you have any questions for our members?
*What’s your favorite food?

If you have questions about the forums, please contact me or @colleensteele. We look forward to learning more about you and your PH journey.

[jen-cueva]

Hi @ihavehope, I am updating your information here. Please feel free to share a little more about yourself. We know you have the fur baby and blessing, Mia. You also messaged me to update me that you mistakenly added CCBs to your profile. But you meant to say you are on a beta blocker. Which one are you on?

If you click the reply button at the top of this post, you will share an update with our forum members.

Enjoy a relaxing weekend.

[Hilda]

Hello, I am Sevo. I am from the sunshine state. My question is simple, this magnificent service is offered in Spanish!!!!! Here in south Florida we have a community ph patient eager to resources and support in Español.

[Colleen]

So happy to have you join us @sevo! Are you asking if we offer the forums in Spanish?

[Hilda]

Yes, it will be a great advancement for the Spanish speaking community in south Florida. I used to participate in a support group and I had the privilege to know the knowledge and understanding that the language barrier imposed to the individual management of the condition to the patient. This influence the decision to better advocate for themselves and understanding the importance the processes to make decisions for improvement when they facing for example procedures that level off stress take priority due lack good understanding!!!!

I apologize in advanced for my late response in this matter but this idea is alway in my heart. Bring educational resources to community in different ways like language specific to me in Spanish my first language.

thanks: Sevo

[jen-cueva]

Hi @sevo, unfortunately, we do not offer our website in Spanish. But you and anyone who wants to read in Spanish can easily use the online Google translator.

@colleensteele and I have brought your concerns and feedback up to our management. Maybe we may have this option one day, but nothing is in the works this year.

I do agree that this would help with the language barrier. We are happy to have those with limited English join, and maybe they can use Google Translator. Usually, there is an option to view a page in another language.

Do you no longer participate in the support group? Thanks for bringing this to our attention. It can be a challenge to manage a rare disease.

[Raya]

Hello I’m Raya (rhymes with “Maya”), thanks for the friendly welcome. I’m the live-in caregiving daughter for my 94-year-old Navy vet dad. We’re in San Diego, CA. His bronchiectasis and MAC infection have resulted in PH, as well as the use of home oxygen and nebulizer therapy. He’s also legally blind. Other than that, still mentally sharp and physically stable, just frail.

I came upon this forum as we began to navigate the world of concentrators, tubing and tanks (oh my!). Needed some real world info by actual users, rather than the further removed prescribers and suppliers. Food? Another “oh my” and “ugh”. We’re trying to increase HIS weight, but only mine is going up!!

Yes I do have a question. We’ll be fumigating for termites in about 10 days. Google says remove all oxygen equipment; our DME says the same. The termite guy says tanks can stay; they will be unaffected. I’m leaning on the side of caution and removing all O2-related stuff. I’m having dad use up all the E tanks, so the weekly delivery person can pick them all up. We’ll then vacate with the concentrator and about a dozen M6’s. Then back home in a few days, & back to our usual O2 routines. I’d be grateful to read other folks’ experience with fumigating. Appreciative of this group.

[Colleen]

@raya it’s always so nice to see a new member jump right in and feel at home here…at least I hope that is how you are feeling. We have a wonderful PHamily here and we love supporting one another.

Your dad sounds amazing and obviously he raised an amazing daughter. I know from experience how challenging caregiving can be. He is lucky to have you.

I don’t think we have a forum topic yet about fumigating and that would be a good one to have. Thank you for bringing this up. I will have a topic posted about this soon and will tag you in it!

[Raya]

great idea – thank you!

[jen-cueva]

Hi @raya, welcome again! I’m also in San Diego. Have you and your family always lived here?

Your dad sounds like an interesting guy. Thank him for his service. My hubby is also a Navy Vet. We lived in SD when we first married; he was stationed in Coronado but lived in Texas for years before moving back about a year and a half ago. SD is perfect weather for my PH. I can enjoy the outdoors and breathe better.

You are a wonderful loving, and supportive daughter Caregiving is tough. Do you have support and free time?

You made me giggle about trying to get him to gain weight, but you are gaining. It happens.

I like your plan while fumigating. I have not had that issue, but I will be interested in others’ experiences when Colleen shares that topic.

Hopefully, you will feel supported and feel comfortable. This is a safe place, and we also talk about our experiences with PH and various other topics. Thanks so much for sharing some of your story.

[jen-cueva]

This is @raya‘s reply which she posted as an update instead of a response. I’,m sharing this so she can see where to reply so others won’t miss her updates.

Raya said, “I’ve been away from San Diego for nearly 5 decades, spent mostly in the Bay Area. Yes, I do attend an online caregiver support group (meets weekly), and checking on another one offered by the VA as a backup. Dad is homebound but still independent enough with his ADL. He is respectful & encouraging of my free time. But free time or not, it’s a treadmill. Dad is being followed by the VA and NMCSD, including a pulmonologist. It was quite the learning curve to become acquainted with how the 2 medical systems relate, how Medicare and Tricare relate, and which of his issues are offshoots of which. And now, oxygen-world! I’ll definitely check out those links. Thanks!”

Raya, yes, I’ve heard that although they share common rules and limits, Medicare and Tricare are not always identical. Learning the VA system can be challenging and takes patience. Now, oxygen use is another set of rules, it seems. It is much easier to follow than learning the VA system. Hehe.

So, do you have other family in the Bay Area? Did you come back to SD to help care for your Dad recently after being away for 50 years?

Are y’all out with the oxygen and all while the house is being fumigated this week? Let us know how we can support you. I’m happy you are taking time for yourself.

[Raya]

Ugh – I posted a long reply and got an error message. May have to wait til tomorrow to reconstruct. Hopefully it went through.

[jen-cueva]

Hey, @raya, I’m sorry about the error and trouble posting. Try breaking it down into two smaller posts. Also, waiting a few minutes in between help, too.

If that doesn’t help, feel free to send me your post to share on a message here or via email- @[email protected].

I’m happy to post for you. I know how frustrating this can be. I’ll let out tech guy know. Thanks for letting us know.

[Raya]

Today (Sunday 16th) we finally! get to check in at the Airbnb. So I plan to bring over whatever’s not valuable or O2-related, as we’ll be staying at home one more night. Then Monday 17th, family will help bring everything else: Dad, his O2 & supplies, and me. That’ll be OUR first nite (got my eye on the bathtub with jacuzzi jets!). Tuesday 18th is when the tenting & fumigation happen. Stay tuned….

[jen-cueva]

Hi @raya, the tub with the jets sounds like a wonderful way to soak away your worries. I’m grateful that you have other family members who can help bring you and your dad and belongings over to your Airbnb.

Tomorrow is the big tent day. Then how long do you have to stay at the Airbnb? Did you find one close by or in another area of SD? Which location are you near? I’m near RB, between the 15 and 5.

Hopefully you can soak away once all is moved in, and you both get settled.

Please keep us posted on how we can best support you as you care for your dad.

[Raya]

What an exhausting day! Not sure I’ll do jacuzzi tonight; I’m orienting dad to his new surroundings.  Brought a few things from home so he’ll have continuity, like his oatmeal bowl. We’re just in the next town over (Chula Vista); dad’s house is in National City. So glad my brother and his 2 kids helped with the last minute details; got it done in one trip, with one car and one truck. How about some more jokes – that’ll be of great help 😀

[jen-cueva]

Hi @raya, the jacuzzi would be the best solution after a busy day. Maybe a glass of adult beverage if you drink, too. Hehe.

Continuity is important. I bet the oatmeal bowl and the small things he uses daily help greatly. How did you do the first night in a new place? You know about the time he gets familiar with all there, you will both be back at his house.

Thankful your brother and his kids help with the move. One big trip must have been a relief. Hopefully, they are close if you need breaks or help with Dad.

I’ll look into a topic with jokes and other funnies. When I do, I’ll tag you. Do you like comedies on TV? That’s always my go-to after a bad day if I want to watch anything. Laughter is the best medicine, right?