Scared, need help with questions re: worsening symptoms/pressures. 2017-08-31T00:47:04+00:00

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  • Abigail Eccher
    Participant
    Post count: 1
    #6715 |

    Hello everyone,

    I was diagnosed with idiopathic PAH in October 2015 when I was 23, and have done well since I’ve been on a combination of Letairis and Amlodipine. At diagnosis, my systolic pressures were 95+ and my symptoms consisted of frequent blackouts (couldn’t walk through a grocery store). After a few months of treatment, my symptoms went away almost completely, and I could tolerate most “normal” tasks short of exercise. At this point, my pressures stayed in the low 40s.

    A few months ago, I started noticing the return of some of my old symptoms, i.e. getting faint with exertion, shortness of breath, so my cardiologist ordered an echocardiogram, which showed my systolic pressures in the high 70s. I see my PH specialist soon, so I hope to have another RHC to confirm. I love my PH specialist, but it’s hard to get answers to the difficult questions. Does anyone have any suggestions or have a similar experience to share with me? Has anyone had issues with calcium channel-blockers and successfully switched to a different “class” of medicine? Do I have any hope of reversing these pressures, and therefore the symptoms? I’m starting to realize how hard it is for PH patients to get any information, given that it is a rare disease and every case is different.

    Also, before learning of this issue with my pressures, I was planning to have my eggs harvested so my fiancé and I could have a family member act as a surrogate for us to have a child. Has anyone dealt with this and have any advice?

    Thank you, and God Bless.

    Abigail

  • Patricia
    Participant
    Post count: 23

    Hi Abigail. My name is Pat and I too have idiopathic PAH, was diagnosed in 1999 and also had pressures above 100. I started treatment with I.V. Remodulin, then as they became available my doctor added more medications — like Adcirca and Letairis. It took a while to get me stabilized but they did it and I have been able to live a normal life although I still get short of breath when I overexert myself.

    I am here to tell you don’t worry because there are so many medications available now for PAH. Remodulin saved my life and I just yesterday stopped taking it because my doctor switched to an oral medication, Uptravi, which seems to be working great. But of course I had to be weaned off of the Remodulin. Now, I am only a patient but I truly believe the most important medications for PAH are vasodilators, e.g. Remodulin, Flolan, Veletri, Uptravi, Adcirca, etc. My doctor explained there are several pathways that need to be treated with PAH so he is giving me a vasodilator (Uptravi), another vasodilator (Adcirca) which he explained works through another pathway, and lastly he is giving me an endothelin receptor antagonist (Letairs) which works on yet another pathway — not allowing endothelin cells to stick to the walls of the vessels in order to keep them from getting even more narrow. Talk to your PAH specialist about these drugs. If he/she is not familiar with all of this, then I would say you need to find another doctor.

    As far as harvesting your eggs, I wish I had known about that when I got diagnosed because maybe now I wouldn’t be childless. I say, DO IT!!! Good luck and if you would like to “talk” some more my email address is mizkytee@att.net.

  • Ashley
    Participant
    Post count: 3

    Hi Abigail,

    My name is Ashley and I also have Idiopathic PAH and my story is similar to yours. I was diagnosed in July of 2015 at the age of 25 right before I turned 26. My levels at diagnosis were in the 90s and I was passing out and got tests done after an absent seizure on a rowing machine. I have been on vasodilators from the beginning. My pressures have just gone down with the a combination of IV Remodulin that Pat mentioned and Adcirca. My pressures are now maintained in the 50s. I’ve been able to do more than I was when I was diagnosed on these drugs, they saved me.

    I agree with Pat to talk to your doctor about these drugs and find a new one if the doctor does not know more about these treatments. If your were to go on Remodulin, a central line can be life changing. I have found many ways to make it work so far and would be happy to help. My pressures felt worse after initial treatment too. Once you find a treatment that works for you it will get better. Like Pat said it is important to have different medications that treat PAH through multiple pathways.

    As for harvesting eggs I haven’t considered it. If you have a family member willing to be a surrogate I say go for it. From personal experience I know it is devastating to have this diagnosis especially when you are looking to start a family someday. I was diagnosed my first year of marriage. If you are open to it adoption can be a good way to go as well. It’s a process I’m currently considering. I would be willing to talk to you anytime, my email is amoconno4@gmail.com.

  • Patricia
    Participant
    Post count: 23

    Abigail and Ashley, I would like you to learn from my mistake (or ignorance). At the time I was diagnosed there wasn’t any talk about harvesting eggs, otherwise, I would have done it without a second thought. If you can find a surrogate mother — do it! Don’t spend the rest of your lives seeing mothers with newborn babies and having your heart break or wondering what it would be like to be called mommie. I have survived this illness for 17 years and I know I will survive it another 20+, so have your children without fear. God bless you both.

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