Have You Noticed an Increase in PH Symptoms?

[Valerie]

Hi Jen,

Very interesting topic.

I have recently noticed this very thing about myself lately. I have thought about this in the past.

My Doctor has not mentioned this to me, I have been paying attention to the various emotions and symptoms throughout my day and nights as this disease progresses. And you are so right about stress causing
Additional aggravated problems.

I tire easily and it lasts longer. Pain is compounded.
I get headaches and neck tension. Pulse is higher and chest feels heavy and lots of pressure.

Sometimes I get angry easier and depression comes easily.
My faith sustains me. But it is difficult. My family is to busy with their lives.
It hurts, but if I don’t keep myself busy, I will end up with more personal emotional and health problems. It is a real struggle.

I currently take Opsumit for
PAH. It has helped. I also take several medications for
Various other health problems. I feel like all the meds help but cause the body to misbehave because of contraindications. What do you do? But follow docs orders hoping meds help.

[Jimi Mcintosh]

The increase in heart rate, palpitations is most likely Aniexty, leading to PTSD. People with chronic and terminal illnesses were at the top of the casualty list. “Waiting to get novid-19”, do I have the reserves to fight it? This is not the way that I expected to go. As I was laying in the isolation, waiting on the swan test results, I suffered anxiety, PTSD and dread.

It seems that some of the weakest did survive round 1, now we have to mentally, physically and emotionally prepare for round 2. I was ecstatic that I did not have the virus, but was in the middle of anew type of PH flare up, with
New organ issues, meds not being as effective and not certain if I was in decline.

[jen-cueva]

,@jimi, my heart aches for you as I read this. I cannot even begin to imagine the anxiety and trauma that must have been. PTSD and anxiety are what I struggle with. Then, you have the after-effects that linger on for years.

This pandemic certainly can be a struggle for us. As the second wave comes in, I believe that you are correct. I am grateful that you did not have the virus, but a PH flare-up or PH Crisis like some of my PHriends call it, is not an easy idea to grasp either. Thinking of you.

[Randolph Reynolds]

I have to fully agree with Valerie about how stress aggravates my PAH symptom. I am doing a balancing act with all the symptoms such as bowel issues, ear aches, foot problems, weight gain and the like. It seems to me that I am going through stages of the disease getting worse. However, when I can get out it is like going into a new world. It is good for me and I now realize that before the virus I was more able to handle my condition. A year ago when I had to go on continuous supplemental oxygen that marked a significant change in my mental resiliency. Now with the added limitations of what we can do because of the virus my depression has deepened. I seek ways to get out of the house but with few places to go it seems as if we are incarcerated. So the circle of wanting to be more active and doing something about it soon becomes what do I do when that ends? I try to remind myself that mood swings are normal but it doesn’t clear them up. I wonder if why I feel short of breath at times when in fact my oxygen level is good. My cardiologist says that is probably a result of the disease.

I marvel at the strength of character that people on this forum have. We just do what we can and rely on God. My motto is be courageous and not afraid to do what opportunity presents.

[Carol alexander]

Went to my ph doc yesterday my breathing is worse took me off Sidenafil and back on Adempas

[jen-cueva]

@valerie, it is not just you. I am sorry that your doctor did not mention how stress may affect you. I would be sure that you let them know, too. Although stress adds to our symptoms, we would not want to dismiss anything.

That said, the symptoms that you speak of are undoubtedly similar to mine when I become overly stressed or overly fatigued. Emotional and mental struggles affect our overall symptoms. This is why we must see what we can do as far as coping mechanisms to help try to decrease stress. I am grateful to know hat your faith keeps you grounded. Please remember that is why we are here and want to support one another. This pandemic is not helping.

You bring up another important subject, managing PH medications with other co-existing illnesses and other medications. This is where communication between doctors can be important and essential to your health.

[jen-cueva]

@ripple76, I related to you when you talk about before this virus you could handle your disease. I see and hear about how difficult this is for everyone. My therapist said to me, ” no one can deal with the everyday stress we are in. Not even those who are fine and physically at their best. Their mental health is no good.”

You also mention the limitations. I am the same. When this first started, I did not realize how much of my independence that I had. This may entail going to get groceries, pick up meds, etc. Now, I am limited. I was already dealing with my limitations of certain things. This compounds that.

The mood swings are normal, and I hear that too. But, that does not make them easy or that we do not dwell on those struggles.

This closing statement makes my heart happy is can a positive that we can hold on tight to. “I marvel at the strength of character that people on this forum have. We just do what we can and rely on God. My motto is be courageous and not afraid to do what opportunity presents.” Thank you- take care of yourself.

[jen-cueva]

Hi @carol-alexander, I am sorry to hear about your increased breathing difficulties. How do you feel about switching back to Adempas? Did you feel like your breathing was better on it? These are in different medication groups, so maybe the Adempas will offer more refined for you.

Did he share any other news, or was that mainly it? How are you doing overall? I am sure the breathing issues are not helping mentally, either—hugs to you.

[Jimi Mcintosh]

Carol, hope you are breathing better on the Adempas, I did not see a drastic improvement until 2 months after titrating from .5 to 2.5mg 3 times a day. I really felt better on the adcirca ( sidenafil), I could tolerate walking up to 2 miles, seemed to breath better. I was changed due to the effects that adcirca had on my liver and kidneys. I now say that I take maintenance drugs, they are designed to slow the disease progression and to allow us to function. I no longer panic until I see my oxygen level drop below 91, and I start to experience the dizziness and spinning.

I believe that a new treatment is on the horizon, from all the research on vivid-19, which is working to improve the respiratory functioning. Hang in there and allow the Adempas to work, control the stress of all the changes. I would go back to adcirca if not for the side effects.

[jen-cueva]

@jimi, I love your attitude. I think that focusing on what we can do and not panicking on every little thing is helpful. This helps our overall health. Yes, I agree, my meds are maintenance drugs, and I am OK with that for now.

I do think that new treatments will be coming out soon. Research for COVID-19 has helped to focus on meds that help the respiratory system.

I am sure that @carol-alexanderwill appreciate your support. @carol-alexander, how are you feeling this week?

[Colleen]

@jimi as Jen mentioned, you really do have a very good attitude towards life, illness and treatment. Has this always been your personality or has experiences helped you develop a “cup is half full” way of looking at things?

[Jimi Mcintosh]

My twin 3 yr old grand daughters never heard of do not stress papa, I have been on the floor coloring, eating play dough, helping to dress and curl the dolls hair. My grandsons with the race cars, and video games. Living the great life.

I am experiencing more breathing issues, more joint pain in hips and knees, right shoulder that never stops aching. Very high dose of Lasix everyday to control fluids and swelling. Recently diagnosed with fatty liver, new kidney issues, back on diabetes meds.

I am going to beat this and be ready for my miracle drugs. If I can deal with covid-19, I can deal with anything. Waiting on clearance to get eye surgery done before window of opportunity closes

[jen-cueva]

Hehe @jimi, I love that about your twin 3-year-old granddaughters. I love those stories. I know you are enjoying every minute!

I am sorry to hear about the increase in symptoms. Have you been off and on diabetic meds for a long time?

I hope that you will get that clearance soon for your eye surgery. I, too, am with you on that miracle drug. Uptravi and Revatio combo for me seems to be doing alright right now. But, always looking forward to new findings.

Take care and enjoy those granddaughters. I can see and hear the giggles at your house.

[Steve Sallee]

Just wanted to pitch this in. I, too had often wondered why I struggled with shortness of breath when my blood O2 was 94-97 or thereabouts. Think I finally got an answer when VA doc did a blood gas. My CO2 level was extremely high and the doc said my body THINKS I need O2. I have issues exhaling the CO2.

[Jimi Mcintosh]

Thanks Steve
You just solved a mystery for me my O2 has been in the 95-98 range and I am struggling to breathe. I have had high CO2 levels for years and no one has given a plausible answer. I just got some new labs and my CO2 is high-high.
Monday, I plan on sharing your discovery with my pulmonologist. I get toxic and really struggle when my O2 drops below 95, time for steroids, inhalers and possibly an ER visit

The fact that we are all ages, ethnicities, we all have forms of PH,
Our sharing experiences and findings helps us understand that what we experience is real and has commonalities. If our medical teams are listening to us we can possibly help them to a cure or treatment. I have been sharing my discoveries with my doctors that treat me for other ailments, so that they can grasp how PH affects other
Body processes and they can help
Treat the whole body.

I being tested, MRI, CT scanned, electrolyte tested, to determine the cause of my severe fatigue, low iron, low cholesterol, high thyroid counts. Every visit and test is helping them to learn about PH and it’s processes, things they were not taught in school.
They are asking questions and making comparisons with other mystery cases.

[jen-cueva]

Hi, @exjarhead57730, that is an important factor. Although I hate those material blood gas (ABG) tests, I have always had high CO2 levels. My O2 saturation drops even more with exercise. How often do you get the ABG test? My new PH doctor does not do these as often as my previous PH doctor.

Thanks for sharing this.

[jen-cueva]

Hi @jimi, I am grateful that you found some answers from Jerry’s post. This is why we share our experiences. You never know when our stories will benefit others.

Have you had an arterial blood gas(ABG) test?

You are correct; each visit you teach the staff and, as you mention, your “medical mystery.” I always feel like I am a medical mystery, with my PH and other coexisting illnesses. PH does affect our body as a whole.

I hope that you will get more answers soon. Please update us.

[Jimi Mcintosh]

I average 2 ABG’s a year, no one has an answer besides obesity for my being winded and seldom show an O2 level below 95. Been told that my red blood cells are oddly shaped, large in size and do not carry a lot of O2. They disagreed for almost 2 years on whether it was asthma, COPD, Bronchitis rather than PH. It took 2 regular and a double heart cath to conclude that it was actually PH.

[Steve Sallee]

They seem to give me one every time I go to Urgent Care for difficulty breathing. I sometimes have to be admitted for a “tuneup” for a few days when that happens. They will also do one then.

[jen-cueva]

@jimi, I am sorry about your difficult time getting a diagnosis and still no answers. This can be frustrating. I was initially diagnosed with asthma, too. I think that is more often than not with PH. Because PH has so many symptoms that mimic other diseases, this can be tough.

Which PH medications are you on? I know some of our PH meds can affect our red blood cells.

@exjarhead57730, it sounds like you are quite familiar with the ABGs. I had a horrible experience with one early in my PH diagnosis, so it is not a favorite of mine. I have not had one in almost a year now.