This topic contains 8 replies, has 4 voices, and was last updated by  Kathleen Sheffer 1 year, 5 months ago.

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  • #12092
     Kathleen Sheffer 

    I’m writing a series called “In Defense of Transplant,” because I think it’s so important that PH patients be referred to and seen by lung transplant teams while they are stable.

    Lung transplantation has a bad reputation, though. I’ll be the first to admit I didn’t want a transplant. Nobody wants a transplant! But for patients with end-stage pulmonary hypertension who have exhausted all other treatment options, a lung or heart-lung transplant can cure pulmonary hypertension and significantly improve quality of life and functional capacity.

    Have you discussed transplantation with your doctor? What’s keeping you from undergoing evaluation with a transplant team? Do you know which center near you has the best outcomes?

    Empower yourself by doing the research now so you can make an informed decision when the time comes. I’m here to answer any questions!

  • #12094
     Brittany Foster 

    I love how you are writing about this Kathleen! You are a great example of someone who has went through transplant and is a success. I think it’s so important to be evaluated. My PH isn’t considered end stage, but my lung function is only at 23%. It’s so difficult because they are unable to find exactly what has caused my function to be so poor over the years it has just been progressively getting worse. It almost makes me wish they could just find something that is making it worse so I could be evaluated for transplant. At this point it is just progressing without an answer on how to keep it from getting any worse. It’s so scary.

    • #12113
       Kathleen Sheffer 

      Yeah, Brittany, it’s so tricky. Even when I had blood in my lungs and my O2 sats were in the 60’s or lower and my pulmonologist was telling me I could have another event at any time and I would probably not survive, cardiologists were coming in and telling me my heart looked great! We had to ask for an exception because my lungs were not going to last long enough for my heart to fail enough to get priority for transplant.

      You might just insist on being evaluated because it can’t hurt. Though that’s usually only an option if you’re already maxed out on PH therapies. I think you’re only on oxygen, right? Are the other therapies off limits because of your CHD? My friends who have PH secondary to CHD can’t be on IV meds so not sure how it works for you.

      • #12119
         Brittany Foster 

        Yea it is so tricky for me and as of now not an option because of my underlying neurological conditions that influenced my lung disease in the first place. as you know we are all so complicated with so many different factors involved that influence each of our conditions !

  • #12107
     Brian Gilbert 

    Another awesome article Kathleen! My wife’s PH doc mentioned transplant during our last visit with him. He said it would be irresponsible not to discuss the option of transplant in case med increases can’t control the PH. As much as we didn’t want to hear that, I’m glad he said it and takes the approach of transplant discussion early. He contacted Duke University and we go there next month for an evaluation so if transplant is needed, the preliminaries will have been done.

    In your article, you mention survival rates. When my wife was first diagnosed, it seems like that’s all we could focus on. Now that we’re ‘settled in’ with PH, we realize that her doc was right and that those numbers aren’t exactly right and it’s all based on individuals. Now that we may be facing lung transplant, those numbers come up again. Some of these numbers seem very general from what I’ve read and compare overall rates vs. breaking down cases by disease, age, post transplant care, etc. I feel we’re seasoned enough now with medicine to pay attention to these numbers, but realize that they don’t apply specifically to us.

    • #12112
       Kathleen Sheffer 

      Brian, seems like this is coming at just the right time for you and your wife. I’m glad her doctor is sending her for an evaluation. When I had my evaluation, I was more advanced in my disease (didn’t know it at the time, but I would have the transplant one year later) so I went with the intention of showing them my worst. Still, the team refused to list me because I was too healthy. Ha!

      Patients are never ever transplanted too early – I cannot stress enough that transplant is a life or death decision – something I did not understand before I had mine (I had a lot of back and forth in my own head about whether I wanted one…nope, didn’t want one. But I wanted to live).

      It was lucky that I went through that early evaluation because when I was listed after having massive hemoptysis, I didn’t have to go through as much testing and I was already on their radar. Got a transplant 28 days after listing! In my situation, it was miraculous that I even survived that long.

      The lung transplant patient population is similar to the PH population in that it’s very heterogenous and hard to compare between cases. The survival statistics you read include patients who receive a transplant at age 65+, even though the survival rate of patients age 35-49 is about 15% higher. PH patients are some of the most compliant transplant patients because we are used to taking lots of medications, whereas recipients from other disease groups often don’t have the same experience. Anyway, I think it’s all garbage. I just try to focus on what I can control. I have my own path to follow and the other data points don’t influence mine.

      The center where you receive care matters. You want to go to a transplant center that does lots and lots of lung transplants. Duke has been doing lung transplants since 1992 and averages about 100 per year for the last four years (they do a couple heart-lung transplants every year, too). I’m getting this from OPTN Center Data, by the way. With under 2,500 lung transplants (and under 30 heart-lung) performed nationally every year, that’s pretty good. You’re in good hands!

      Let me know if you have any questions about the process. Evaluation can be a rollercoaster of emotions. Just take it one day at a time!

  • #12123
     Kaye Norlin 

    I concur with Kathleen regarding researching using all of your options which include transplantation. I became end-stage PAH in October 2016. I was first diagnosed with PAH in 2011 and my doctors then did not know why I was still alive, let alone functioning, working 3 jobs, and being very active, exercising daily, gardening, etc. They predicted that I have had this for 1/2 of my adult life- over 33 years- and still functional Level I. My pulmonologist and my cardiologist first suggested being evaluated in Jan. 2015 and I did. It wasn’t until I “died” for a bit that all of this became a critical issue. I went thru the screening and was listed in April 2017 still not sure that I would go thru with it when the time came. After 2 false alarms (dress rehearsals or dry runs as they say), that call came January 3rd, 2018. I was ready as I knew in my heart, soul, and mind that my PAH was getting worse again and I didn’t want to die.

    Although the transplant program at Advocate Christ in Oak lawn was relatively new, the surgeon came from Northwestern University Hospital and the transplant coordinator started the program at Loyola University so they weren’t new. I looked at Loyola and Advocate Christ and Northwestern and AC was the best fit for me. Plus I did my own research. Their survival rates are higher than other places in here in Illinois. We PH patients do better, as Kathleen said, than others because we are so good at medical compliance.

    I was 66 when I got my transplant and I am now the poster child for their program. I did my first 5K on May 5th, World PH Day, and I exercise faithfully and follow all the instructions. I too think a lot of the stats that are out there don’t affect me since I am focused and follow my own path which includes making my bucket list and setting goals for 5-15 years out. By then I will be 81 and still want to be teaching old farts yoga, growing my organic plants, riding horses (not this year), and travelling.

    I would not pass up the opportunity to get evaluated and then make your decision. In the end, it does come down to (for me) I didn’t want to die. I have things to do.

    • #12128
       Brittany Foster 

      Wow Kaye !!!
      You have been through so much and it’s so great and inspiring to me that you have completed a 5k already !!!!I love how you are focused on what you want to accomplish in your life. I’m sure this has changed your life in more ways than you even thought possible. I hope you continue to keep going after everything you want. Stay as positive as you are ! That’s half the battle !

    • #12147
       Kathleen Sheffer 

      Kaye, I so appreciate you sharing your story! I love how different yet similar our paths have been. It’s great confirmation for me to know I’m not alone – not the only patient who had to make a life or death decision and not the only recipient benefitting from a transplant. Thank you, thank you!

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