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Pulmonary Hypertension Crisis
Living with PH for almost 15 years, I have had my share of “PH Crisis”. I had mentioned this term in a separate comment and wanted to discuss this more in detail.
Some of you may be wondering what a “PH Crisis” is. PH News offers this explanation.
For myself, I consider a PH Crisis as an increase in my PH symptoms. I usually notice an increase in chest pains, palpitations, fatigue, and lightheadedness. I have also noticed an increase in my shortness of breath with limited activity.A PH Conference that I attended several years back, one PH doctor talked about PH Crisis. He mentioned that any increase in symptoms, lasting more than a few days could be considered a PH Crisis. Often a PH Crisis necessitates a hospitalization. I have had my share of PH Crisis as I mentioned. Some occurrences my numbers, such as PH pressures, and fluid overload are part of this crisis. Other times, additional stress and/ or other things like the flu or cold, etc. can cause my PH crisis.
For me, hospitalizations with IV diuretics and pain control may be a part of the treatment plan. Other times, rest and decreasing my stress and well as watching my fluid intake may be part of the treatment.
What do you consider a PH Crisis? What treatments usually help you when these Crisis pop up?
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6 Replies
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Jen, as a caregiver, to me was when I would feel a little more anxious to get my son to the hospital. To me it’s was when his symptoms seemed out of control and beyond his normal tolerance. Once at the hospital it usually would result in an admission and many days there battling low oxygen saturation’s, chest pains, fatigue, etc..
Usually the crisis would result in an increase in supplemental oxygen, IV Flolan and sometimes oral medications. Rest was always important, as was maintaining fluids. Unfortunately there were many times it was a matter of just waiting it out, like you would a cold.
What we learned early on was not to wait it out at home because it’s too risky a chance of severe complications. No one wants to be in the hospital but we found the peace of mind of being around his medical team, much more valuable.
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Hi Jen,
This is always something that has been hard for me to manage. With multiple chronic conditions AND multiple things that can cause pulmonary or cardiac symptoms, I can never be too sure. Something that helps me manage my symptoms is talking to my primary care doctor. Usually she is available to see me when I need her and will evaluate things like oxygen levels, blood pressure, and my overall health status. This is something that I need others to do FOR me because I am not a good judge of this especially when I am trying to avoid a hospital stay. Usually someone else has to bring up their concern for me in order for me to really take action and go to the hospital or agree to go. It has always been this way for me because of my hospital traumas. It’s such a last resort for me but I have a bad habit of waiting until things are AWFUL in order for me to get care. Having the doctors to do that work for me and make that call really takes a lot of stress of myself. -
Hello, I really don’t want to sound like I’m complaining but, I have been to doctors that have told me different diagnosis ? All of these tests and more tests have led down a path of confusion. My story starts three years ago when i went to the E.R. with swollen legs, chest pain and feeling really bad. I stayed six days were i had every kind of test one could think. The end result was i had a enlarged heart and very weak, a DVT in my right leg and i have pulmonary Hypertension. I was put on lasix, warfin and potassium. I had a second opinion four months later were i was told i had a medical miracle and it was like it had never happened or reversed it’s self. I felt blessed and like i had been given a new lease on life ! Now this last summer the chest pain had started up again and I am short of breath (new). I go to my primary care doctor were he can hear a split in my heart beat and my legs are swelling again.Mind you that i have been on blood Thinners and Diuretics this whole time. I make a appointment with a new Cardiologist and i find out, I have Pulmonary Hypertension (mild) and I am also in heart failure (Diastolic stage C) With all of the testing they found that i have a nodule 6mm on right lung. I had forgotten to mention three years ago they found 2mm 4mm 5mm nodules and tracked them for eighteen months, they stayed the same size.Now I am in Shock after learning my latest diagnosis and want more answers to what kind and what can i do about it. I see a new Pulmonary doctor and says i have nothing to worry about ? What ? did i hear that correctly ? Yep ! That is what i was told. Now i go back to my Cardiologist last week and says I’ll see you in six months. Yes, six months. I asked what about the P.H. ? He replied ” I am a Cardiologist” and walked out of the room, NO Kidding ! Now if i were to tell you all of the Doctors and hospitals I have been to you would be Shocked. The Best ! So, Now I’m back to Lasix(Diuretic)160mg,Potassium. They stopped the blood thinners. I went to my primary care doctor this week telling him ” My Cardiologist told me to see you about, Left chest pain and shortness of Breath” I got the strangest look! My prime care doctor did not know what to say or how to treat me? I left that office in total disbelief. I now have nobody to monitor my Kidney function/because of 160mg daily dose of Diuretics and no Pulmonary doctor to tell me what type of Pulmonary Hypertension i have been diagnosed with or treatment plan.I am reaching out to you for Help. I still have left chest pain and shortness of breath and little hope. Thanks for giving me the chance to write to all of you. Todd
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Todd,
I agree with Colleen. getting a PH specialist or a pulmonlogist at a top hospital for PH that would even be able to refer you to someone would be great. Getting that right heart cath or even an exercise echo to begin with might be in your best interest. I always make sure that the doctors are checking my oxygen levels on exertion. This is how all of my lung and heart stuff got picked up on. My levels are always fine when sitting down or being still, but when I am up and moving around they really dropped a lot. This wasn’t picked up until YEARS after suffering and it was really hard to find someone that would listen to me an take me seriously. It does take a lot of patience but unfortunately when we are dealing with something so serious, time isn’t always on our side and we need immediate help or testing to figure out exactly what is going on. -
Hi Todd,
Brittany and Colleen offer some important tips and suggestions. I just wanted to add to that that I’m so sorry you’re going through this, Because of the complexity of PH, most doctors have no clue. I know it must be beyond frustrating for you. I hope that you will use some of the tips to find someone who is more educated in PH.We are here for support and please ask any questions. Best of luck to you and I hope you find a new medical team. It sounds like you’ve been ” through the ringer”, with this.
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@todd are any of these doctors that you have seen, a PH Specialist? If not, then I highly recommend that you find one. A PH specialist will discuss and treat both your heart and lungs with it’s association to PH. I know, another doctor, but if you are interested, here is a link to the PH Associations, “Find A Doctor” page. Maybe you can find one in your area that can at least give you an evaluation. https://phassociation.org/patients/doctorswhotreatph/
PH does not just go away or reverse itself. I know you said that you have had lot’s of tests, was a right heart cath one of them? That is the best way to diagnose PH and what stage of PH a patient has. It can also help doctors determine the best form of treatment.
What has been contributed to the heart failure? Heart failure is also a symptom of PH so that’s why I’m asking. In my opinion 6 months is too long a wait. You obviously have many unanswered questions not to mention a progression of symptoms that need to be addressed sooner than later.
Unfortunately, sometimes it takes multiple tries to find the doctor that is right for you. I know you are frustrated and exhausted but maybe you should look into another team…especially a PH specialist.
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