If You Could Change Something About Your PH History, What Would It Be?

[jen-cueva]

Wow, what an excellent and thought-provoking question. As I think about what I would change about my PH history, one thing was to connect with the PH community sooner than I did.

For each example you mention, I could have done a bit better with most. Maybe this is because I have almost 17 years of experience with PH.

But the emotionally stronger and letting out my emotions tug at me the most. I often struggle with keeping my emotions in. This has affected my emotional stability on many occasions and affected my PH. Staying strong mentally, physically, and emotionally is essential. For me, this is an ongoing struggle. Can anyone else relate?

[Colleen]

@jenc we were fortunate to have been introduced to another PH family during Cullen’s first hospital stay. They helped us find out way into the PH community. But we have never attended a PH Conference. Came close the first year of diagnosis but canceled because Cullen was too sick. Never made the effort again because we were trying to save out sick and vacation time for travel to CA for Cullen’s PH appointments. I wish we made a greater effort to attend at least one.

Emotional stability is a hard one and I’m willing to bet it is for most. I was just thinking today about how 7 years post-transplant, I still feel the emotional effect of PH. It’s there in the PTSD. It’s there every time Cullen isn’t feeling well because even though it’s now due to transplant issues I am reminded of WHY he had a transplant in the first place.

I’m all for letting the emotions out when you need to. Prior to PH I maintained a stiff upper lip. Now it’s too hard not to get emotional at times, especially when you are active in the PH community and take to heart what others are going through too. Sometimes I think it helps to think of myself as compassionate instead of emotional. It’s a more positive way to view the emotions.

[jen-cueva]

Hi @colleensteele, I think that if Cullen has an interest, y’all should still attend a PH Conference if you get that chance. Post-transplant stories from patients and their caregivers are inspiring and informative. I believe that offers hope to those who may need a transplant in the future.

Like you, I feel like I held my emotions much better pre-PH. But as all of you know, PH takes a toll on our mental and emotional wellbeing more than many could imagine.

I try to remind myself that it’s better to feel the emotions as they come, and then I am better prepared to process that emotion and move on. Others may say that we are sensitive. Does anyone else get that from others?

[germaine-norwood]

I was diagnosed in 2021 with severe IPAH , hospitalized and not expected to live out the rest of the year. Fortunately I am now doing much better. Like many others it took over  12 months and 6 different MDs to finally get a correct diagnosis. While few will admit it, ageism sometimes plays a role in senior patients not being listened to. My symptoms actually started in 2014 at age 66 but my Cardiologist refused to acknowledge there was anything wrong despite the fact I was in great shape but couldn’t finish a simple stress test since I was so out of breath they had to stop the tread mill. She thought I was either lying about my exercise regime or just “getting old or senile”. While my own persistence and 2 brilliant Cardiologists who actually believed me saved my life, I wish I had fired my former Cardiologist a long time ago. Lesson learned- you know your body better than anyone and run from any MD who fails to respect your concerns ( at any age).

[Colleen]

@mgnorwood many of us have learned this lesson the hard way. You are your own best advocate! I’m glad you persisted and finally found a doctor who listened and finally diagnosed you.

Ageism is a thing and sometimes it goes the other way. My son became symptomatic at 6 years old and went misdiagnosed for 2 years. They thought it was croup, thought it was asthma and then they resorted to telling us our child was having panic attacks. Anyway, we persisted as you did and finally a wonderful pediatrician and a cardiologist figured out the PH, but by then my boy was critical.

How are you doing now? Have you been referred to a PH specialist?

[jen-cueva]

I’m sorry, @mgnorwood, that you went through so many hopes to get a diagnosis. But grateful to hear that you continued to push through and advocate.

We know our bodies best, and it’s frustrating when doctors dismiss our symptoms. Ageism is often a factor or weight. Doctors told me that I was out of shape and overweight. I was around 30, and the extra fluid I was carrying because of heart failure was why I was overweight and out of shape.

Which PH treatments are you on that are helping you? Thank goodness you have a great team at UCSF.

Thank you for sharing your journey, as others will undoubtedly relate.

[germaine-norwood]

Hi Jen

I am on Opsumit, Tadalafil, Spironolactone and Furosemide. I have moved up(improved) a classification level after being on all these drugs since 2/21 . I have no side effects to the drugs and exercise on my stationary bicycle 6-7 days a week. Feeling pretty fortunate !

[jen-cueva]

That’s awesome, @mgnorwood! It sounds like you’ve found the treatment regimen that works best for you. That is relatively quick, too- so, extremely fortunate.

How are you dealing mentally and emotionally? It sounds like whatever your push is, it’s working, my PHriend. Keep it going! Your results and your exercise tolerance will offer hope to many others.

[germaine-norwood]

Thank you for your response and perspective. It must have been so difficult to experience this disease through your son at such a tender age. I am indeed so sorry. I am doing better than anyone expected thanks to Dr. Teresa DeMarco who runs the PAH clinic at UCSF. She and my regular Cardiologist are giving me the best care possible. I am indeed fortunate to have had such a good outcome.

[carol-volckmann]

Being your own advocate is crucial. So many assumptions, biases are made and when it comes from the medical field it can be dangerous to our health.

Agism, gender, weight, bad habits all can be a factor when a doctor is/is not diagnosing our health issues. I use to be a heavy smoker so automatically I must have Emphysema- too bad! It took years and lots of research on my part and my husband’s to find the right fit – from W to CA.

Gender and age came up again in finding a new PCP as we move from one area of WA to a new area. When I felt the new PCP doc was not taking me seriously, time to find another.

I am very happy to hear Germaine you are doing so much better now. You really went through the wringer, but fought for yourself and now have a team behind you. Wishing you well always with a hug.

[jen-cueva]

Hi @mgnorwood, how have you been? Is there anything new going on that you would like us to support you? Please share an update anytime you’re feeling up to it.

[jen-cueva]

Hi @mgnorwood, are you copying and pasting text here from another source by chance? I see some code like you are trying to highlight or align words. This often happens if we copy and paste from a note, etc.

I did edit your 2 posts here. If you haven’t, I will check with our tech guy and see what’s going on. Thanks.

[terry]

I was cleaning out my ever burgeoning medical file yesterday when I came across a 2 1/2 page letter from the respiratory registrar at a large teaching hospital to my doctor detailing that I had presented to Respiratory  from Rheumatology with breathing issues when exercising or walking up inclines . The letter went into great detail on my past history and detailed results of all the tests . Their finding was that I had a mild limitation to airflow and  mild emphysema . I really wish I has read the letter more carefully back when received . Not only were the tests conducted when I was at rest or under anaesthetic whereas my breathing issue became very apparent with mild exercise  but details of my background were incorrect which at the time I glossed over.Eg. Stopped smoking 25-30 cigs a day in the mid 90’s ( only ever 10-15) or heavy drinker until early 80’s ( joined AA in 70’s but was not a HEAVY just had a drinking problem) .  On reflection the underlying tone was that there was a mental issue. I really wish  I had challenged the findings back then. Actually upon reading the letter yesterday I was tempted to send them one but instead have sent you one here and feel much better. Thanks

[jen-cueva]

Wow, @terry! I’m sorry that I missed this comment, and I wanted to let you know that you’re not alone. Unfortunately, as @cdvol3gmail-com mentions, biases are made by those in the healthcare community. These assumptions can be dangerous and lead to a misdiagnosis when complications are put off and not addressed.

I’m grateful that you felt better after sharing these findings here. Although, I am sure it continues to frustrate you. Thankfully, you have better care now and continued to advocate until that happened. Kudos to you!

@cdvol3gmail-com, I’m writing my next column about how many tries it took to find a new PCP. It is challenging, and these assumptions and biases often hinder us from the best care. It’s unfortunate and makes us better advocates and a bit more exhausted. Thanks for your comments to Germaine that also will benefit Terry.

I’m sorry that you, too, have experienced this. Too funny about the emphysema. Although I never smoked, I’m often asked if I have COPD or Emphysema when others see my O2. Yesterday the oral surgeon’s assistant said, “no sucking through straws, and no smoking for three days.” I mentioned I’ve never smoked, and he looked at my O2. I immediately educated him a little on PH. He probably would have heard a much stronger advocate and speech if my mouth wasn’t so sore. Hehe.

I’m sending you hugs to you both.

[debbie-moore]

I was diagnosed in 2021 but believe I’ve had PH since 2018.  I’m still new to all of it but at the same time I feel like I’ve had this forever.  I wish I had of paid more attention to the side effects before taking any medication.  I have found the side effects to have made a greater impact to my poor health than the medicine helping it.  I now am on Tadalafil and I don’t think it helps.  My O2 helps more than anything.  I’m still SOB whenever I walk to fast or carry anything.  Walking on the treadmill, I do great but I’m not carrying anything including my POC and I’m walking like a snail. Doctors don’t believe I should need 4L of O2 for my PH being in the mild/medium stage.  But they can’t figure out what’s going on.  Well, I thought what was going on was PH.  Very frustrating.  I tell them it’s the fluid.  I’m overweight.  They haven’t said that is the problem.  But they see me and know I need to lose weight.  I gained 45 lbs when I started medications.  I eat like a mouse and I can’t stop the fluid.  I lost an initial 9 lbs of fluid, but I have a lot more to go.  I think I need to speak louder and boldly.  Sorry, I was starting to rant.

[jen-cueva]

Hi @debbie, I’m sorry that you feel like the treatments aren’t helping you. This must be frustrating when you don’t feel like the doctor is validating your concerns and trying to find out why you’re retaining the fluid and having so much difficulty breathing. I’m happy that your oxygen is helping some.

Have you tried other treatments before tadalafil? Were you retaining this fluid before starting it? My apologies if I forgot. For some, I’ve heard it can cause an increase in fluid. It sounds like a treatment change may be needed.

What about a second opinion? Do you feel like your PH doctor is not meeting your needs? Check out this topic on second opinions.

Yes, speak loud, Debbie and self-advocate. I know you can and will do it. Vent away anytime; we are here for support.

Between the frustrations with this and selling the business, I can imagine your emotions are on overload right now. I’ll say an extra prayer for you. Take care of yourself, and please keep us posted- hugs from San Diego.

[debbie-moore]

I started with the Tadalafil then the doctor added Ambrisenten, then Orienetram.  The doctor left; got a new doctor.  He took me off of everything but Tadalafil.  Our first appointment was via phone (too much snow to go see him).  We need to meet again.  I’ve been speaking with my cardiologist about the fluid.  I did not have fluid retention before the medication.  When I stopped Ambrisenten, the is when the 9 lbs came off.  I’m sure the Torsemide helped.  I just received my CT scan results and all is normal.  I will definitely bring up the fluid with the pulmonologist.  I’m sure we will be meeting soon.

[jen-cueva]

Hi @debbie, I’m happy that your CT results came back normal. But know that doesn’t help solve this increased fluid issue. Hopefully, you can have an appointment with your pulmonologist soon.

Have you had any luck calling or messaging your nurse via a MyChart or something similar?

I hope that you have a great new week. Don’t forget to take those breaks.

[Colleen]

@debbie I’m sorry you have had more issues than relief from treatments. Remind me, do you see a PH Specialist?

Do they play with your dosages? They often had to for my son. Keep in mind he was a growing child so there was a need to keep increasing but sometimes we ended up titrating down because the symptoms were too much. We would increase again but very slowly and this usually helped. You will experience a period of increased symptoms with any level of dosage change but it shouldn’t be long-term. If that is the case then I would say it’s time to consider another treatment option.