This topic contains 14 replies, has 6 voices, and was last updated by  Kathleen Sheffer 5 months, 2 weeks ago.

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  • #12563
     Kathleen Sheffer 
    Participant

    Hey all! I’m at the Pulmonary Hypertension Association’s International Conference this weekend, learning a lot, and taking photos constantly (as I type this my wrist is sore from lifting cameras). CTEPH (chronic thromboembolic pulmonary hypertension) is one of the diagnoses that I’ve been learning about (and that I knew nothing about before today). CTEPH can develop as a result of a pulmonary embolism, a clot formed deep in a vein that travels to the lungs, clogging the arteries there.

    Unlike other forms of PH, for which there is no cure, CTEPH can potentially be cured through a pulmonary thromboendarterectomy, or PTE. PTE is a surgical procedure to remove clots from the arteries in the lungs.

    Robin Frankel (@rocko-robin) shared that her doctor referred her to San Diego for a PTE after her recent CTEPH diagnosis. The University of California, San Diego was the first to develop the PTE procedure, but it’s now performed in select hospitals throughout the world.

    Those of you with CTEPH: what do you know about PTE? Have you undergone evaluation? If you’ve had the surgery, how did it affect your symptoms? The surgery often helps patients, but doesn’t necessarily treat all symptoms, as demonstrated by a recent study on PTE and underlying sleep disorders in CTEPH patients. Doctors can prescribe CTEPH patients the same oral therapies that pulmonary arterial hypertension (PAH) patients receive.

    I’d love to hear your experiences with CTEPH treatments. I’m glad I understand this diagnosis a little bit better now and hopefully I can answer more of your questions about it in the future.

  • #12585
     Robin Frankel 
    Participant

    Hi, Kathleen, thanks for your comments. I know UC San Diego is extremely successful and that they fully vet their accepted patients. I am hoping to be one of them very soon as this is a potentially life saving surgery! The surgery is quite daunting, open heart/lung but obviously worth it with a success rate of 90% I believe. I’m sorry I missed the convention, I would have liked to hear more about but if I’m accepted I’ll write about it! Thanks again, Robin Frankel

    • #12587
       Brittany Foster 
      Keymaster

      Robin,
      Please keep us updated. I know that the possibility of any surgery can be so nerve wracking. Try to do things for you in the meantime to help get your mind off things and practice some self care while waiting! Waiting to hear back is so hard!

  • #12608
     Robin Frankel 
    Participant

    Thanks you, guys. I really love my life and love waking up in the morning every day to take a nice big bite out of life. My mom had pulmonary fibrosis and Mac but lived twenty more years. She took belly dancing lessons on oxygen as well as fencing, rode an air boat for fun, she was a great role model. But I have to say I’m tired. As I wait for approval for surgery, I’m very tired. My grandbaby and daughter come tonight and I should be excited but I kind of just want to go to sleep and skip a few days of life. I don’t really get depressed, I’m a very positive person but I think I’m just really tired.

    • #12632
       Brittany Foster 
      Keymaster

      Hi Robin,
      I understand how frustrating it can be to feel so tired but also looking forward to something at the same time. I hope that you were able to have a good combination of rest and fun when they came to visit you. Doing activities together that doesn’t require a lot of exertion would be good. I always try to be honest with my guests or those who I am hanging out with and let them know when I feel like I need a break. I’m sure they will understand!

  • #12677
     Terry D. Blissett 
    Participant

    Hi all. I am currently being tested for CTEPH. Please let me know if you have been diagnosed or will be tested and share your experiences. Thanks.

  • #12861
     Randolph Reynolds 
    Participant

    I was diagnosed with CETPH late in 2014. It wasn’t too bad then but in the last four years on Adempas it become worse (right side heart pressures doubling). As a result I am on Remodulin (subcutaneous)infusion. Seems to be helping. The surgery was an option but I refused to spend time and money on getting more eligibililty testing. I am not one that thinks surgery is a primary solution.

  • #12864
     Terry D. Blissett 
    Participant

    Randolph thank you so much for responding. I just got my results back from my VQ Scan and my doctor referred me to another specialist for a pulmonary angiogram. The scan revealed blockage/damage from the PE and they have to see how much damage there is and if surgery is necessary. Please share with me your perspective on what I should be doing at this time concerning this news and my current and future health. Thanks.

    • #12865
       Terry D. Blissett 
      Participant

      Also, Randolph please share what were your symptoms and how they became worse. What actually became worse?

  • #12872
     Robin Frankel 
    Participant

    Terry, in my case the VQ scan set off a whirlwind of tests to determine eligibility for surgery, and they put in place Warfarin, adempas, and lasix as well as certain activity restrictions til potentially a PTE surgery. Please update us on all the changes you are going through. Good luck! Robin F

  • #12876
     Joyce Sandberg 
    Participant

    I just posted an explanation of why I am not eligible for PTE surgery. The distal residual clots and scarring prevent me from this operation. At 76 year old, I cannot say I am disappointed as the results from this surgery are not 100% guaranteed. Recently tested for other options and not eligible for them either.
    My doctor at Cleveland Clinic in Weston, Florida has me on Adempas, Eliquis, oxygen 24/7 (2 ltrs at rest, 6 ltrs exercise and walking, 4 ltrs sleeping. As mild COPD was the primary cause I use Tudzorra Pressair inhaler as well as a Ventolin inhaler (if needed).
    About 2 years ago I experienced massive bilateral clots in both lungs. The stress to my right heart was noted by an assigned cardio dr. while I was hospitalized. 6 months later, I was told that my body absorbed the clots. However, my shortness of breath remained. Both my cardio and pulmo drs. had no real answers for me. I decided to further my quest for info and found my new pulmo at Cleveland Clinic. He found the reason behind my SOB (CTEPH). The right heart cath and VQ Scan confirmed my condition. I see him every 3 months and have since eliminated my former local drs.

  • #12877
     Randolph Reynolds 
    Participant

    Terry,
    When I went on Adempas in Feb 2015 I was able to walk on average 1400 feet in six minutes. Based on using the medication an night oxygen supplement from a concentrator through my CPAP I was able to go on cruises, visit other places but I had to be careful not to push my self if I felt like I was getting dizzy. I avoided stairs but could walk about 100 yards without stopping. I was able to fulfill my duties as a volunteer which meant standng and walking for about three hours. I was on Warfarin and still am. I have CETPH but now they are calling in congential heart disease.
    Then just eight months ago I noticed a definite decline in my ability to do these things. I was feeling loss of energy and just plain unwell. Note that I have had bouts with depression over my life and that was beginning to affect my mental state. I saw a cardiologist that I trusted and he saw me twice to confirm what he suspected was an increased the back pressure on my right side of my heart. I had an echocardigram and the pressures were much higher so my Pulmonary Specialist in Phoenix wanted another VQ scan and a Heart Catertization. These confirmed that my right heart pressures were considerable higher that three years ago.
    I had two choices to improve things. Spend time in at the UC San Diego clinic for further testing to see if surgery would solve it. There was some question about being eligible for surgery so I elected not to bother with all that for many reasons and chose to go on Remodulin via subsutenaous infusion. I just began that and things are starting to improve. Slowly.
    In my judgement the key is to get to a pulmonologist who specializes in PAH. I’m fortunate for one of the best clinics in only 120 miles away.

  • #12878
     Randolph Reynolds 
    Participant

    Joyce,
    I have the same reaction about Surgery (PTE) as you. I am 77 and wonder about quality of life after such dramatic efforts to clear my lungs an arteries. So I as said I am on an infusion pump. In a way we know what is causing our life changes. I visit a lot of people in the hospital who have no idea what is happening to them because PAH is often not considered in its full impact.

    Randy

    • #12897
       Terry D. Blissett 
      Participant

      Thanks everyone. I will definitely keep you posted. I am a 48 year old fairly active male. This is such a challenge for me physically, mentally and emotionally. I hope and pray that there will be better news ahead.

  • #16863
     Kathleen Sheffer 
    Participant

    Tagging @catherinejewett39 here because she was recently diagnosed with CTEPH and is looking to meet other patients in similar situations. Please welcome her 🙂

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