This topic contains 13 replies, has 5 voices, and was last updated by  Jen Cueva 4 months, 3 weeks ago.

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  • #17373
     Colleen Steele 
    Keymaster

    Being told that you are not eligible for transplant must be such an emotional challenge for any PH patient to hear. I’m sure it’s not easy to talk about but if you have faced this reality and have found helpful ways in dealing with it, consider sharing your experience on this forum and maybe help someone else. Have you read a book or article on this topic that you found helpful? If so, please share your resources.

  • #17385
     Jen Cueva 
    Participant

    Great topic, Colleen, not an easy one but certainly needs to be discussed.

    Although I am thankfully not in need currently of a transplant , I have already been told I am not a candidate. I was told the reason was that I would need a kidney, heart, and lungs. This was told to me a few years back after I had a really extended hospitalization and my team of doctors discussed this with me then.

    My reaction, well I was sort of numb for a bit but now I am thinking, maybe with changes and increased technology and things, maybe if and when that time comes, I maybe still have a chance.

    I think that I try and see the positives in everything, that outlook helps as well as my support and my faith. Do t get me wrong, I’ll throw a “ pity party “ every now and then , but I have my party, then move on . That’s the only way I’v made it 14+ years now!

    Interesting question, although I hope not many are told no, I know they are and would like to hear their experience.

  • #17396
     Colleen Steele 
    Keymaster

    Jen, thank you for being open to discuss a difficult topic for you. I do know that their are many others out there who are not eligible for transplant either due to underlining conditions or too serious of a decline and other issues. I brought this up because it personally haunts me that not everyone will have an opportunity to go to transplant.

    May you stay stable and strong for a long, long time but should you reach a point where you would need a transplant, definitely go through the evaluation process and get second opinions. My son has kidney disease and his reality is that sometime, hopefully in the far off future, he might need a kidney transplant and so far no one has told us that it wouldn’t be possible. I’ll be honest, I haven’t researched it a whole lot yet either. I’m a little afraid to.

    I can understand how transplanting heart, lungs and kidney all at once would be an intense surgery with a lot of concerns, but I wonder if a heart and lung could be done and then kidney later, or vice versa? I don’t want to give you false hope but I would research it more and keep in mind that the field of medicine is always changing and developing.

    You are amazing! 14+ years battling PH and from what I know about you, you make the most of every day. Oh, and about the pity parties, I would be concerned if you didn’t have them. It is natural and I think necessary to allow ourselves some self-sympathy when needed. Strength is built off of moments of sadness.

    • #17400
       Jen Cueva 
      Participant

      Colleen, thanks for bringing this subject up and for your kind words and thoughts.

      I hope to not need a transplant, but I definitely would get a second opinion, third even if need be.. I think like yourself, that it should NOT be an issue. It breaks my heart as I’ve known several that didn’t make it long enough to get a transplant and I know there’s not enough “ to go around “ as they say but in my world , all would get successful transplants who needed them, right?

      Thanks again, but yes, so true, we get stronger as we go through rough seasons.

  • #17420

    Jen you are my hero!!! 14+ years is awesome!!! I only hope to last that long. Bless you.. 🙂

    • #17427
       Jen Cueva 
      Participant

      Thanks @christopher-cassata-bobby-shows, positive thinking…thanks for your compliments.

      One day at a time…..😊

      • #17429
         Brittany Foster 
        Keymaster

        So true about the “one day at a time” mentality. Sometimes, especially in my recovery, it’s more like a minute at a time lol! Yes, I deserve to have days like that too hahaha. At least I’ve been learning when my body needs a break! The worst of times sure teach us a lot!

      • #17432
         Jen Cueva 
        Participant

        Brittany, so true…and I bet you do and have been taking one minute at a time,,,and that’s perfectly fine, too!

        You’re one amazing and inspiring young woman, to say the least !

      • #17439
         Brittany Foster 
        Keymaster

        Thank you so much , Jen. It really means the world to me ! 🙂 Thank you for all your awareness and outpouring of support you give.

      • #17462
         Jen Cueva 
        Participant

        Thanks Brittany for your kind words.

        Hope that today you were able to eat something yummy 😉

  • #17437
     Jimi Mcintosh 
    Participant

    Dealing with the final diagnoses of PH ( PAH) is hard, seeing your future and dreams disappear in a flash. Having the conversation of transplantation is harder, then being told, that you are a poor candidate for a transplant, and most likely will not listed is very difficult.

    I understand that the people most likely to survive and stick to the rigorous follow up requirement is critical to the success of the program.
    That leaves you depressed and anxious.
    But with the other struggles, associated with this disease, you pick
    up the pieces, you research the treatments, you keep going. There is a miracle cure just over the horizon. It is harder on your family, especially the grand and great grand kids. Acceptance is key, you worry over what you can control or fix today, those things beyond your control will work themselves out

    • #17440
       Brittany Foster 
      Keymaster

      So true Jimi. I think that more than half the battle when dealing with any chronic illness, especially one that is as serious as PH is recognizing and accepting the things that we don’t have much control over. At first, all of the things we don’t have control over seems to hit us out of nowhere and may feel like we are getting sacked by a bag of bricks. But, it does get a little easier with the right amount of support and understanding. I am grateful for this group for that reason and for those who truly “get it”. Your post goes to show that you definitely “get it” and know how hard this can be.

    • #17441
       Brittany Foster 
      Keymaster

      So true Jimi. I think that more than half the battle when dealing with any chronic illness, especially one that is as serious as PH is recognizing and accepting the things that we don’t have much control over. At first, all of the things we don’t have control over seems to hit us out of nowhere and may feel like we are getting sacked by a bag of bricks. But, it does get a little easier with the right amount of support and understanding. I am grateful for this group for that reason and for those who truly “get it”. Your post goes to show that you definitely “get it” and know how hard this can be.

    • #17463
       Jen Cueva 
      Participant

      You are so correct on that , Jimi! Acceptance is definitely a huge step and some never get there. I think that your tips to worry about what you can control and do today is a great reminder!

      Support and understanding is a huge help and I’m glad we have each their and these forums to offer that support.

      Thank you !

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