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One of the many sad realities of having PH is that not everyone is eligible for transplant.
I am working on a column with the goal of helping those who are ineligible for transplant feel less alone. Hopefully help them with their feelings by sharing yours.
Are you ineligible for transplant and willing to answer a few questions with permission to quote you in my column? Quotes from caregivers are also welcome. I would actually like to get a few quotes from both patients and caregivers.
If you would like to respond, please direct message me @colleensteele or preferably, email me at [email protected] . Let me know here if you will be contacting me so I can keep an eye out for your message/email.
I would like to have several responses so the more people willing to participate, the better.It is just a few questions via email. Thank you in advance.
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Hi @colleensteele, I am ineligible for a transplant. I can tell you that it is because not only would I need lungs, I also would need a kidney transplant. When I was in the hospital, my kidneys completely failed. I was told that I needed a miracle because I also am not eligible for a kidney transplant. Thankful to you and the others who prayed, my kidneys started functioning a bit. I am forever grateful.
LMK if you want me to answer any more questions.
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I was actually listed for transplant in 2015 (although I was still a bit ambivalent about it) but then my caregiver moved out of state and I didn’t have anybody else who could move to the transplant city for 1-3 months at a moments notice, and then stay with me another 3 months after that. My center didn’t allow paid nurses as a primary care-giver. They removed me from the list until I found a new caregiver.
I probably could have persuaded someone if I really, really wanted it but I have already outlived the avg survival post transplant. I am fine with my decision.
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Hi @mendo-bruce, it is good to see ya pop in. I have not seen you much. Are you keeping busy?
I do recall when you shared this story with us. That is so sad, but I know there’s a lot that comes with transplants.
It’s good to know that you are “fine” with your decision. Another positive is that you are still here with us. Thanks for sharing.
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@mendo-bruce can I interview you about this topic via email? If so, please private message me your address or email me at [email protected].
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@mendo-bruce I remember when you shared that experience with us. I respect how you have come to terms with the ineligibility. Your story provides hope to others that it is possible to outlive statistics.
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I received a greater response from this than I expected. If you have contacted me about my column I will be reaching out to you soon. I might not be able to include everyone’s experience in one column but we can discuss options to include you in a future one.
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@johnalecbriggs I hope you are doing well. I emailed you the questions for the transplant column. Just want to make sure you received them. When you have a chance just let me know when you will be able to answer them. Thank you, @jenc and @mendo-bruce for contributing to this.
I could probably fit another interview or two. If you are interested email me at [email protected]
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Thank you @mendo-bruce, @jenc and @traceyaustralianmigration-co-za for contributing their personal experiences to this column, “Adult PH Patients Share Their Experiences With Transplant Ineligibility”.
Whether you are eligible for transplant or not I hope you will take a moment to read what they shared.Let’s discuss it. Share your feelings or ask questions regarding transplant ineligibility.
Click the following to view the column:
Adult PH Patients Share Their Experiences With Transplant Ineligibility
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