• Cleveland Clinic Info

    Posted by dennis-h on May 21, 2023 at 8:02 am

    I was recently declined acceptance for lung transplant at Vanderbilt University due to artery blockages. I was told CC does more high risk transplants so I asked Vanderbilt to refer me to them and they said they would. Does anyone have experience with Cleveland that could share their experience. Also, I have concern that I live over 600 miles from Cleveland and wonder how they deal with that.

    Kim replied 1 year ago 10 Members · 16 Replies
  • 16 Replies
  • Sarah Mccoy-Husler

    Member
    May 24, 2023 at 10:18 pm

    I have been to Northwestern University Hospital in Chicago and I’ve been advised the Cleveland Clinic is highly rated. Both are are wonderful places to be seen.

  • Sarah Mccoy-Husler

    Member
    May 24, 2023 at 10:18 pm

    I’ve have heard wonderful things about Cleveland Clinic. I have been to Northwestern University Hospital in Chicago and I’ve been advised the Cleveland Clinic is highly rated.

     

  • Alan

    Member
    May 25, 2023 at 2:21 pm

    I don’t know anything about the Cleveland Clinic but I have recently been accepted for a lung transplant evaluation at UPMC and on their website they say they take higher risk patients than most. Maybe if Cleveland Clinic doesn’t work out for you  you could check out them out.

  • Annette

    Member
    May 25, 2023 at 2:42 pm

    They won’t deal with the distance, you will. They will require you to live within a certain mile radius, so be prepared to move.

  • Paul D Boccocelli

    Member
    May 25, 2023 at 6:52 pm

    I live in Phoenix, AZ., I am 75 years old, St Joseph’s Medical Center does transplants here, so does Mayo Clinic.  As someone who was accepted into the lung transplant pool, although my scores were  too high to be considered for placement on the list, I get re-evaluated every 90 days. My last evaluation was yesterday, and as expected my scores were lower. Since December I had Covid, followed by pneumonia, and two bouts of chronic bronchitis. So anyway I’m currently being retested to make sure I’m still a viable candidate.  At St. Joseph’s once you are accepted into the active transplant list you must reside within one hour of the hospital, so when an organ becomes available you are nearby. I’m assuming this is standard for most transplant hospitals. They don’t want you being in Europe or on a cruise when an organ becomes available. Fortunately, I live within a 30 minute drive of the hospital. Those who don’t are expected to make living arrangements in the Phoenix metro area while awaiting transplant, and I believe, for six months post op. So for those don’t live nearby it can be an expensive proposition.  St.Joseph’s also does not have a mandatory upper age limit, I believe, but don’t know for sure, some hospitals have an upper age limit of 65. St Joseph’s has performed more than 1,000 lung transplants.  If you have relatives in the Phoenix metro area, or just would like to live here, you might consider asking your physician to refer you to St. Joe’s for an evaluation.  Sorry to ramble on for so long.

  • John

    Member
    May 25, 2023 at 6:52 pm

    Have you looked into Duke? They do more transplants than any center in the country and our  pulmonologist mentioned that they take a lot of cases that other centers reject.

    • Allan Byron

      Member
      June 2, 2023 at 2:46 pm

      Was declined by UCLA because Im 75, frail and had triple bypass and also have coronary stenosis. Trying to go to Cleveland clinic, because heard they do simultaneously stenosis repair and lung transplant. Any input will be appreciated

  • dennis-h

    Member
    May 26, 2023 at 3:41 pm

    Thanks everyone for all the information. Since I originally posted Cleveland Clinic notified me that the risk for my transplant at my age was too high for them to take. I was referred to Duke but haven’t heard from them yet.

    • John

      Member
      May 26, 2023 at 6:52 pm

      My wife has IPF and is a patient at Duke as we live close by.  If you need any information about the area , I’d be more than happy to help.  My wife’s sister is needing a lung transplant and is at Vandy bc she lives in that area. She too may end up here at Duke. I’d be happy to be of any assistance if you come to  Duke.  I’m very impressed with the pulmonary department at Duke and in particular with the pulmonologist she sees. Please don’t hesitate to reach out if you need anything as I regularly read this forum.

  • dennis-h

    Member
    May 26, 2023 at 4:12 pm

    Alan, good luck on your evaluation at UPMC. I think I’ll try and get referred there as well.

  • dennis-h

    Member
    May 30, 2023 at 9:23 am

    Thanks John…

  • Cheryl thomas

    Member
    May 30, 2023 at 9:31 pm

    Alan I too have been getting tested at UPMC. I started last year. Just found out at my May testing that my antibodies are at 74. Which means that only 26 percent of the lungs would be good for me. Do you know how many antibodies you have. It’s the HLA luminex testing they do. I might get listed or may wait many tears for a donor.  Will find out fir sure in August.

  • Kim

    Member
    June 1, 2023 at 8:34 am

    My husband was turned down for a lung transplant from Duke University and Medical University of South Carolina. Thankfully he was accepted into the Mayo Clinic in Jacksonville Florida. They take the most challenging cases. He is 71 years old and had a heart bi-pass. You have to live within 5 hours of The Mayo Clinic while you wait for a lung to be available. You are required to stay within 10 minutes for several months after the transplant. The Gabriel House of Hope is a beautiful place on the Mayo Campus (with shuttle service available) where transplant patients and their caretaker can stay while they wait for a transplant and during and after the transplant. We stayed at the Gabriel House while he had his lung transplant work up and for 2 months during the transplant. It costs $40 a day. I did not have a referral from a pulmonologist. I completed and application online and told them that no other hospital has been willing to accept him. I hope this is helpful.

  • dennis-h

    Member
    June 3, 2023 at 1:44 pm

    Thanks Kim, sounds like your husband’s situation was the same as mine now. The only difference is my age, 74. I will definitely check them out. I live in North Alabama and certainly could easily relocate.

  • Debbie k

    Member
    June 6, 2023 at 4:03 pm

    <p style=”text-align: right;”>I to have been rejected for transplant at the university of Chicago. My sister also had IPF and was waiting for lungs. Her antibodies were very different and she passed before lungs were available. My health history is extensive which is why I was rejected. Also Alfred talking to several pulmonologist they all said the same thing. There is a reason you were turned down. I was a surgical nurse and did transplants. Please make sure to are fully informed of the post-op procedures. Recovery is very hard. Fatally rate is 50%. Rejection is also high. I chose to live my life as I am. I am pretty far along with my illness. I also didn’t feel I would be able to make it through the surgery and or the recovery. I’m 72 and not healthy.   I wish u all the best and pray things work out for you. Blessings to all. </p>

  • Debbie k

    Member
    June 6, 2023 at 4:03 pm

    <p style=”text-align: right;”>I to have been rejected for transplant at the university of Chicago. My sister also had IPF and was waiting for lungs. Her antibodies were very different and she passed before lungs were available. My health history is extensive which is why I was rejected. Also Alfred talking to several pulmonologist they all said the same thing. There is a reason you were turned down. I was a surgical nurse and did transplants. Please make sure to are fully informed of the post-op procedures. Recovery is very hard. Fatally rate is 50%. Rejection is also high. I chose to live my life as I am. I am pretty far along with my illness. I also didn’t feel I would be able to make it through the surgery and or the recovery. I’m 72 and not healthy.   I wish u all the best and pray things work out for you. Blessings to all. </p>

  • Debbie k

    Member
    June 6, 2023 at 4:05 pm

    <p style=”text-align: right;”>I to have been rejected for transplant at the university of Chicago. My sister also had IPF and was waiting for lungs. Her antibodies were very different and she passed before lungs were available. My health history is extensive which is why I was rejected. Also After talking to several pulmonologist they all said the same thing. There is a reason you were turned down. I was a surgical nurse and did transplants. Please make sure to are fully informed of the post-op procedures. Recovery is very hard. Fatally rate is 50%. Rejection is also high. I chose to live my life as I am. I am pretty far along with my illness. I also didn’t feel I would be able to make it through the surgery and or the recovery. I’m 72 and not healthy.   I wish u all the best and pray things work out for you. Blessings to all. </p>

  • Kim

    Member
    June 7, 2023 at 9:21 am

    Hey Dennis:
    The Mayo Clinic recently did a successful lung transplant on a man that was 77 years old. They are patient focused and committed to saving lives. Their goals are to (1) increase the number of transplants they can perform (2) have fantastic outcomes for their patients. The online application was fairly straight forward. Duke’s application was much more time consuming. Many hospitals “cherry pick” the patients they will transplant as they want to give themselves the advantage to report good outcomes. Mayo Clinic wants good outcomes too, but will accept higher risk patients that other hospitals deny. I take it that you have not had surgery to address the heart blockage yet. Do you have a LAS (Lung Allocation Score)? When my husband was assessed by The Mayo Clinic his score was 44. He waited one month for a lung transplant. Another patient had a score of 90. Since you live in Alabama, The Mayo Clinic in Jacksonville Florida may be an answer for you.The first step is to submit an online application. Then wait to hear from them. They will guide you from there. Please let me know if you have other questions. I do understand how concerning situation is. Kim

  • dennis-h

    Member
    June 7, 2023 at 11:31 pm

    Thanks Kim for this most encouraging info. Just so happens I self referred to them this past Monday and I received a call from Dr. Baz, one of their transplant surgeons, I think. He needed films/scans of the heart cath I had at Vanderbilt. He seemed genuinely concerned about me and my case. He said “I didn’t want your referral to fall thru the cracks”. Regarding the heart issue, I didn’t know I had any blockage until the evaluation I went thru at Vanderbilt and I do not have a LAS.

  • Kim

    Member
    June 8, 2023 at 2:54 pm

    Dennis! You made my day! I am so glad you reached out to Mayo. Dr. Baz is the Chief of Lung Transplant. He is such a brilliant human being. He is quiet and understated, but that guy gets things done. He is very compassionate. He is determined to help any person he can help. I remember being so overwhelmed and discouraged by the lack of guidance and help until we got connected to Mayo. Dennis, I know if they can help you, they will!!!!! Of course they need to determine your medical situation to determine if you are an appropriate candidate for a transplant. But they are also looking for your determination, compliance and strength. My husband went to Pulmonary Rehab (locally, 4 times a week, to get stronger so he could better survive the surgery and recovery if he was able to get a transplant. The whole thing about IPF is so much of it is out of your control. Some things the Mayo Clinic will be looking for from you is your determination and strength, and compliance with what they tell you to do (which includes getting all the records from Vanderbilt ASAP) and a strong support system. You have to have a caretaker and a back up caretaker (we had 3 back up caretakers). By the way you aren’t allowed to hire a caretaker. Think of all your interactions with Mayo as an interview. Let them see how persistent and tenacious you are. Let them see your desire to live and to thrive. When my husband had telehealth appointments I was always present and sometimes out daughter was as well to demonstrate that he had a strong support system. Mayo is looking for what they can do for you and what you can do for yourself as well. It takes everyone working together to get the best outcome. Dennis you have been in my thoughts. If you have the time and energy I would love you to keep me posted. I am feeling optimistic. You are in great hands!!!!!!

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