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    • #24385
      Patricia DuBose
      Participant

      I’d appreciate any insights from the members. My husband is undergoing testing to be placed in a lung transplant list. He had a heart attack on 2007 and had 2 stents placed His cardiac status has remained stable for the past 13 years, stents patent, no other interventions, his ejection fraction has declined to 35-40%. Other than that his heart works fine. The evaluating cardiologists say he is right on the fence, if his EF were any lower, they would not recommend listing us, that his risks of not surviving surgery are moderate ( not high and not low). From our perspective, we’re willing to take the risk because we have no recourse. My husband won’t live much longer without new lungs. Mayo Clinic transplant physician said he would never recommend my husband for transplant because he doesn’t think he’d survive it. Any thoughts?

    • #24389

      @patriciadubose

      This is a really good discussion topic to start Patricia, thank you for bringing it up! I am still on the pre-transplant side of things, so I don’t have too much to offer about the final listing process. I’ll tag a few folks below who I know have had a transplant, and let’s see if they have any suggestions to share with you. Thanks again!


      @mark-koziol


      @justme0956


      @dennisr13

      … any insight you could offer Patricia on the listing process of transplant? Thanks in advance 🙂
      Char.

    • #24420
      Mark Koziol
      Keymaster

      Hello Patricia, your husband still has the opportunity to improve his EF. I mentor a gentleman who was able to improve upon EF. He is now listed but is not sick enough for a transplant. There are some patients who have open heart surgery during the transplant, maybe this an option. My evaluation process took about 6 months but it was not straight thru testing. Every center is different but most test for outcomes. You also have the ability to shop around for transplant centers that are high risk. I had my transplant at the Cleveland Clinic and they are labeled as a high risk high volume center. They also have the best cardiology program in the world according to US NEWS and World Report. I hope everything goes well and if you have more questions, please get back to me. Mark

    • #24429
      Patricia DuBose
      Participant

      My (very limited) understanding from talking to the cardiologists is that he can’t improve his ejection fraction, which is due to the ischemia incurred during his heart attack in 2007. And, because he has chronically low blood pressure, they really can’t give him any medication  to help his heart work more efficiently.

    • #24430
      Mark Koziol
      Keymaster

      Hello Patricia, that’s to bad. Maybe get a second opinion on the heart. My mentee had several heart attacks but I know every case is different. His EF went from 37-47. They would of listed him at 37 but he had been getting as time has gone by. He works out and I know he he is on heart meds. I improved my EF with weight loss and more activity but I had to lose 80 pounds before I was listed. If you go on http://www.srtr.com you will be able to search for transplant centers. I suggest giving them a call and ask them questions about low EF and transplant. Take care, mark.

    • #24440
      Eric Cummings
      Participant

      Hello Patricia and all,

      My name is Eric Cummings and I live in Portland Oregon area. Diagnosed w/IPF in Feb of 18 (although I believe I have had IPF for several years now just never knew what it was.  This topic caught my eye as I am a recent bi-lateral lung tx recipient as of Jan 11th of this year. four and months post tx and I’m doing great. Still a bit weak and wobbly when I walk but continue to get stronger. Back in 2002 down home in Texas I had six (yes six) stents placed in my heart. Since then I have had no issues with my heart and or the stents. My case was originally submitted to UCSF in San Francisco where upon review I was denied due to the existing CAD and the six stents. My Pulmonologist (from Kaiser) then referred me to Stanford Medical here in Los Alto’s (about 20 miles south of SF) in the Bay Area in Dec of 19. Stanford is a top Heart and Lung Tx center in the US and they were not hesitant at all to review my case and ask me down for evaluation. Granted I am in relatively good shape and 58 years old. I experienced an acute exacerbation around Dec 11th, 19′  and was in the ER that evening in Portland. I was then transferred to Stanford Dec 17th to ICU. I was sent for a heart-cath where they found that all six of my previous stents were doing just fine and had no issues, they did find another area in my heart vessels where they felt the need to place another stent. That’s right I now have a total of “seven stents” and two new lungs.

      Sorry for the long response but wanted to give you some context of what is available out there for your husband and to give you a little shot of HOPE. I am a living, breathing and believing example of never, never, never give up your hope and to keep on researching and seeking help from those of us that have gone before and are coming out the other side of IPF and other ILD diseases. I’d love to help and encourage in any way I can. Mine is to inform and advocate for my brothers and sisters that are walking this rare path with me.

    • #24441
      Mark Koziol
      Keymaster

      Hello Eric, thank you for sharing your experience. I think this helps others when they can identify with you because of similar experiences. Take care, Mark.

    • #24447
      Peggy McBride
      Participant

      Joseph’s Hospital in Phoenix is another high volume and thus high risk transplant center. Even though my husband had two stents in his heart, they requireD that a third stent be inserted. They took care of that and then listed him when he had an exacerbation. He had his double bypass within three days of being listed. I highly recommend them. There are other places that are willing to take a risk. Don’t give up.

    • #24448
      Peggy McBride
      Participant

      By the way, my husband was denied at Barnes Jewish Hospital because of the cardiac issues. St Josephs In Phoenix was happy to evaluate him, listed him and provided the transplant. Never assume that one denial means everyone will deny you. Not true.

    • #24449
      Mark Koziol
      Keymaster

      Hello Peggy, thank you for sharing and for your encouragement. Take care, Mark.

    • #24469
      Patricia DuBose
      Participant

      Thanks, Eric and Peggy – I really appreciate you so much for sharing your experiences. This has been and continues to be a such a gut-wrenching experience. I’m trying to stay positive, but we’ve been here for nearly two weeks and still don’t have a clue as to whether Dave will be listed. Between PF and this covid pandemic I feel utterly defeated.

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