How Long Has It Been Since Your PH Diagnosis?

[Susi Steppins]

My diagnosis was July of 2020 at the age of 58.
I am a newbie.
This is a great topic.
Reading other peoples experiences has already helped me so much.

[John Alec Briggs]

My diagnosis was 13 years ago in 2008, when I was 43 years old. I suddenly experienced a constant shortness of breath I had never had before. I was a singer with an active career at the time, so this was a significant event. I went to a cardiologist who just happened to have read a long article on PH the night before. He said if he hadn’t read the article he never would have thought to explore a diagnosis of PH. This makes me one of the rare cases of early diagnosis.

I could have made wiser treatment choices early on, but the important thing is that an early diagnosis meant I was able to manage the disease and keep working, gradually moving from a performance based career to one where I now teach a new generation of musicians. As part of my transformation from performer to teacher, all since my diagnosis, I’ve earned two more master’s degrees and am currently writing my dissertation for my doctorate in Music and Music Education from Columbia University. This diagnosis doesn’t mean we stop living. It just means we have to be more decisive about when and where we focus our more limited energies.

[jen-cueva]

Wow, @johnalecbriggs, I love that you shared some positive news. Your life has been pretty busy and successful despite PH. Often, once we are at a “stable” point, it is easier to go out and do more. We only live one life.

[Clyde]

I was diagnosed in September. I went to the hospital with heart failure. I had breathing issues a few months before.

[Colleen]

@clydedodge and @s-steppins I hope you find hope and inspiration from our long-term survivors like @johnalecbriggs. Hopefully more patients and caregivers will respond to this post.

John, thank you for sharing how well you have adjusted to PH life. Actually, more than adjusted…sounds like you are living life to the fullest and then some!

[Sally Hoffman]

In October 2018 my Internist suspected I might have PH when I presented with severe SOB. I was officially diagnosed with Idiopathic PAH in January 2019. I was 77.

[jen-cueva]

I was diagnosed in 2005; last week was my 16th anniversary with PH. I was 30 at the time. I am grateful for the research and advances made in PH that offers me some oral treatments so far.

Excellent topic and will be helpful for “newbies”, like @s-steppins and @clydedodge.

Thanks to all who have shared thus far. We learn from each other.

[Carol Volckmann]

After several years of being misdiagnosed I was finally diagnosed with PAH caused by Sclaraderma 16 years ago at the age of 60.

I found a Pulmonolgist who wanted to treat me very aggressively and I was fine with that. I am now 77 ( in May) and remain stable with PAH. I plan to be around for a very long time ????.

[Bekah]

Thanks for your post! Very helpful!

[Colleen]

You are welcome, @calver07 and welcome to the forums! Would you like to share how long it has been since your diagnosis?

[Dorothy]

Still trying to learn how to use the site. apparently replies to this question stopped March of 2021.?

[Dorothy]

I was diagnosed in 2013 with PH at Cleveland Clinic. I am 80 and was 70 or so then. But I’ve never had any treatment until just now when I requested sildenafil from my local pulmonary doctor because I read of it on People’s Pharmacy. I just thought because my PH was mild they were not treating it. Now, years later and with my symptoms much worse I still have had no suggestions for treatment. Where to go? Two years ago I went to Mayo Clinic for cancer. The oncologist sent me to multiple doctors including a pulmonologist. PH is on my chart there but no treatment except to add 20 mg. of lasix to substitute for a general blood pressure medication. Earlier this year I returned to Cleveland Clinic in Weston Florida after all these years of silence. With all my health problems I came away thinking it had to be something other than PH causing my symptoms. But now that I am finding some research on line I realize I’ve waited far too long for treatment and don’t know where to find it.
On this response I will spare you the details of my involved diagnoses.

[jen-cueva]

Hi @dorothyirwin-browning, I’m happy you figured out how to post here. I hope this forum offers you some support.

But I’m sorry that you’ve been frustrated with trying to get treatments. When you were diagnosed at Cleveland Clinic in 2013, they didn’t start you on any treatment? Was this the PH clinic there?

It sounds like you need to locate a true PH specialist if your current pulmonologist isn’t. A PH specialist is familiar with the most up-to-date treatments and has experience treating those with PH. You can locate a doctor with this Find a Doctor link from PHA. It’s simple to add your zip code and the distance.

Again, this is my suggestion since you’ve had so many issues trying to get treatment for your PH. It’s helpful to have an educated doctor care for you so they can prescribe you the best medication for your body.

We are here to support you.

[Gayle Ward]

I was diagnosed in 2011. I live with some shortness of breath during exercise, walking up hills and get tired more than I use to. I feel lucky the treatment has worked and my condition is stable. Best wishes to all

Gayle

[Colleen]

@gward except for the issues you mentioned it is so good to hear the treatments have worked well for you! For new members would you mind sharing what treatments you are on?

[brenda-denzler]

I’m not diagnosed. Yet. I have an appointment at a hospital in Boston (courtesy of a referral from my local pulmonologist) for an invasive cardiopulmonary exercise test in early October. I’ve been chatting off and on with Mama Bear for several months. In the course of a recent conversation she pointed out that the fact I’ve gotten this referral indicates that my local pulmonologist really does think there’s something amiss.

It’s funny how you can live in quiet denial about something, as I have been. That, and a brief respite from some of the worst of my symptoms, have kept me believing that I was being referred to Boston only to shut me up! To prove to me that I’m fine! But my symptoms are marching back in (my adrenaline levels are going down, which is what may have quieted them for a few weeks) and what Mama Bear said makes sense to me. And I’m kinda stunned and tense about it all again. Denial. Acceptance. Denial. Acceptance.

So my date of (possible) diagnosis will be early October. At this point I hope I’ll be able to jump down off of this teeter totter of fluctuating coping skills.

I’m amazed at some of the newbies, here. Some of you have gone so long without a diagnosis! I’m impressed at how you kept going.

[Colleen]

Geez @brendad53 you must have read my mind because I thought of you last night and was wondering how you are doing.

@mamabear007 has proven to be a good person to talk to…great instincts. It’s nice that she has been helping you.

It’s only June but you know how time flies. October will be here before you know it, and hopefully answers! Keeping you in my prayers. Thank you for updating us!

[jen-cueva]

Hi @brendad53, I know @mamabear007 has been a huge support for you as you navigate this all and try to get a long-awaited diagnosis. She’s a caring and knowledgeable woman. She’s right; they wouldn’t have referred you there for that specific test in Boston if they thought nothing was wrong.

It’s complicated and confusing, especially when you have days when your symptoms aren’t too bad. But usually, if I ever think I’m superwoman and want to do everyday things, PH symptoms tend to flare up again and remind me I am sick and have PH.

You know the mind will play with you. It can be exhausting, and I can only imagine your teeter-totter of emotions. October will be here before we know it. Please know you’re welcome anytime as we think of you often. I thought you probably were trying to take a break.

Since we last spoke, have you gotten some help cutting your grass, etc.?

You mention the strength of others who go undiagnosed and keep pushing through. Look in the mirror; you have shown your strength and resilience for years as you struggle to find a diagnosis.

[Gayle Ward]

I have been on tadalifil and Opsumit as well as a diuretic since my diagnosis in 2011. I feel much better since I started these meds. Before treatment I had to rest after making my bed. Now I can walk 2 miles a day as well as my daily activities of living. I have good days and bad days and just have to listen to my body. On the bad days I do less.

[jen-cueva]

Hi @gward, I’m grateful that your tadalafil and Opsumit combo has been the best treatment for you since 2011. Wow, walking 2 miles per day is incredible. I can walk and do a bit more since it’s not so humid and hot here in San Diego.

I relate to the good days and bad days. Also, an important reminder is to listen to our bodies. Thanks for that one; as I know, I’m often guilty of pushing through despite what my body says and paying for it later.

Your post offers others hope and shows how important it is to find the best treatments for our bodies. Take care, my PHriend.

[Debbie Moore]

I was diagnosed in May 2021.  Started out with O2 and lots of meds.  Doctor has taken me off my medications except for torsemide and potassium and of course the O2.  I told him Orinetram helped the most but I couldn’t handle the side effects.  He listened then took me off of the last medicine Tadalafil. It has been a rollercoaster ride with emotions and movement.  Thanks to everyone for sharing.  You al bring me comfort.

[jen-cueva]

Hi @debbie, how are you feeling now after having a few days to think about your last pulmonary visit? I can only imagine the emotional rollercoaster you’ve been adding and stopping these PH treatments.

How are the diuretics, potassium, and oxygen doing for you now? Thanks for sharing your experience; I know others will find it helpful. We help others by sharing our experiences. You never know who may need to read it.

[Debbie Moore]

Hi @jenc!  It feels strange to have a disease and feel like I’m not treating it.  I know we basically treat the side effects of the disease.  The only side effects I have now are excess fluid and breathing when I walk.  The O2 is not enough.  I feel no different than when I was diagnosed.  Maybe that is a good thing. Today I have started a true diet.  I’m old school Weight Watchers so it’s not a diet but a lifestyle, but diet is easier to type.  It has gone well so far.  I have noticed I’m not as thirsty.  I only have 60 oz of fluid a day (doctor’s orders) and am thirsty all the time, but not today.  Could it be the sliced cucumbers?  Maybe. I’ll take dieting as a treatment and see how it goes.  At least I’ll be doing something.

[jen-cueva]

Hi @debbie, the fewer meds you need, the better overall if that works. Too often, many think the more treatments, the better off we are when each of those treatments carries its own set of risks and side effects, right?

Do you think maybe increasing the oxygen a little would benefit you? Maybe talk to your doctor if that’s an option to try when walking.

Regarding fluid, I’m limited and have to be careful in the summer with things like cucumbers and watermelon as both are full of water. But I also love both in the summertime. Those slices of cucumber certainly could help as they contain water. They are about 95% water.

I love that you can start thinking of your healthier eating lifestyle as a treatment, not a diet. As I say, that’s a bad word. LOL, But I think that mindset may prove beneficial.

[Colleen]

@ripple76 would like to share the following about when he was diagnosed with PH.

This sounds like a good topic. I was officially diagnosed with PAH in December 2014 by my cardiologist. I had been seeing a pulmonologist recommended by my primary care doctor but he never suggested I might have PAH. I wasted almost two years with him treating me for lung embolisms. Because my cardiologist knew a PAH specialist in Phoenix he referred me to him. (I fired the pulmonologist.) In January I had my first angiogram. I was able to see the fibrous stuff in my lungs. Later they did one to measure the pressures in my heart.

That began a long history of treatment and with the help of my specialist I manage. In March 2019 I had reached a point in the deterioration of my condition that I needed full time oxygen therapy. How that came about is sort of humorous story that I have added to the history of my life with PAH that I’m writing.

Prior to 2014 I began finding myself short of breath. It was very obvious when I went back to a class reunion at the Air Force Academy. At 7300 feet I couldn’t understand what was happening. I had never experience anything like this shortness of breath before. Besides I was a jogger an at home, 5500 feet, I had no problems. In 2012 on an Alaskan Cruise I would struggle just to climb stairs ergo my visit to the PC.

I see my specialist every four months or so and my cardiologist twice a year. I am about to turn 81 but even with PAH I stay active. I do miss being able to travel yet the Lord has seen it beneficial that I keep going.

If anyone out there lives in the Arizona area I’d be glad to give them the names of my doctors. They are the best.

[jen-cueva]

Wow, what a journey you’ve been on, @ripple76! Thanks to @colleensteele for sharing it with you here.

I’m so sorry that you’re no longer able to enjoy traveling. I know you must have many travel stories to share while in the Air Force and then once you retired.

When do you turn 81? I wish we could all celebrate that special day with you. What things do you continue to do to stay active at home?

If I were in the Arizona area, I would love to meet you. I’m grateful that you have such outstanding doctors there. Thanks so much for sharing.

[Randolph Reynolds]

Thank you Colleen and Jen.  I appreciate your help on getting posted.  In answer to your question I flip the calendar to a new year on the 29th.  I guess that makes me legal to be a curmudgeon.

Randy

[jen-cueva]

Thinking of you and sending you the happiest 81st birthday blessings and wishes, @ripple76! I hope you can enjoy your special day and feel good enough to do something that makes you smile.

Thanks for your contributions to the PH News forums and all the members.

Do you have any plans today or this weekend to celebrate with family and friends?

[Colleen]

@ripple76 well you certainly don’t come off as cranky in the forums and I find it hard to believe you are like that in person.

Happy birthday my companionable PHriend! I hope you are making time to celebrate you in some special way.

[Jo Ann white]

I was diagnosed in June 2019 at age 78 after two years of increasing breathing difficulty on exertion. Had started tests but was hospitalized before they were completed. Have since been on 4-6 liters of oxygen 24/7 and am now stabilized on a combination of tadalafil and nebulized tyvaso, plus LASIX as needed and control of fluid intake. Opsumit did not work for me, nor did several copd inhalers. However just this week pulmonary hypertension clinic at usf/Tampa general, where I was referred by my local pulmonologist, decided I am doing so well I need to come for tests  only every 6 months instead of every three. Of course, I am largely staying isolated due to Covid but get out occasionally with d tanks and mask and have a supportive network of friends and neighbors to help with things I find difficult.
I work at home, which helps, and after pulmonary rehab do daily exercises and 1/2 hour of aerobics at least five times a week. Also do a lot more cooking to maintain a low salt diet. Mostly I get frustrated that everything takes a lot more planning and time when I was used to going at a dead run, but I am doing much better than I had anticipated. I do most of my shopping online and have a life alert system that seems to be functioning well. Do get tired with occasional bouts of brain freeze but am much calmer than I was when first diagnosed.

[jen-cueva]

Hi @jo-ann-white, thanks for sharing your update with us. It sounds like your pulmonary clinic appointment went well. Congrats on moving to 6 months appointments. That’s fantastic news!

Although you get frustrated planning, it sounds like you have a routine that works for you and doing well for you. WTG on your pulmonary rehab AND aerobic exercise so often! That’s amazing!

It certainly helps with the sodium when you cook at home. Online grocery ordering is a lifesaver, isn’t it? I only started using it before COVID, but now I love it. Although I enjoy grocery shopping, this offers a safer and takes less effort.

I used a life alert system for a short period after my rough bout with COVID while my husband was working because I couldn’t stay alone. It worked well and gave him and me a little peace of mind. I was initially resistant, but he was not backing down on this one.

I hope that you find the forums helpful. Your post will help encourage others. Thanks for sharing.