Log In or Register to Join The Conversation!
Viewing 15 reply threads
  • Author
    Posts
    • #27391
      Colleen Steele
      Keymaster

      Here is an update from @exjarhead57730. Let’s give him our support as he walks the road to transplant.

      Finally looks like a lung transplant is in the cards. I have been through all the testing and am on what should be the last one. The transplant team wants to see if acid reflux will be an issue post-transplant. This involves keeping a probe in my esophagus and stomach for 24 hours. I will be removing it in 40 minutes. Not a very pleasant procedure, but I will endure whatever is deemed necessary. I have had to earn everything I have gotten and this will be no different. On Friday I will meet with the transplant team and hopefully have more info then. Semper Fi to all here.

    • #27394
      Colleen Steele
      Keymaster

      @exjarhead57730 congratulations! I know all too well how difficult this decision was for you and how evasive the testing to become listed can be. For what my opinion is worth, my son and family have never regretted the decision. No, it’s not an easy road to travel but the hope it provides is well worth it.

      Acid Reflux puts transplanted lungs at high risk for rejection. The probe is an unpleasant test but necessary. That being said, reflux will inevitably need to be treated post-transplant. My son has taken 2 different reflux medications, 2 x’s a day since transplant. So far that regimen has worked well for him.

      I will be anxious to hear an update about your meeting on Friday. I wish you well and good luck with it all.

      Semper Fi!

    • #27395
      Jen Cueva
      Moderator

      Hi @exjarhead57730, first of all, thanks for your service, Sir. I hope that all of your tests work in your favor, and you will have new lungs soon. Please know, that @colleensteele mentions, we will be supporting you through it. Colleen is an excellent resource for your questions about transplant. But, we all can support you with this new journey.

      I will keep you in my thoughts and prayers tomorrow as you meet with the transplant team. You are near the Seattle area, correct?

    • #27402
      Sally Hoffman
      Participant

      @exjarjead57730. You are in our thoughts and prayers, Sir. SemperFi.

    • #27403
      V.R. Peterson
      Participant

      @exjarhead57730, thank you for your service. You’re in my thoughts and prayers.

    • #27404
      Carol Volckmann
      Participant

      Hey exjarhead, first, I repeat what Jen said and thank you for your service! You are really in good hands at UW – they are top rated for PH, PAH and transplants. Good luck tomorrow, you are in my thoughts and wishing you the best possible outcome with all the test so you will have that transplant! 🙂

    • #27407
      Bill Jones
      Participant

      I wish him luck on his road to transplant. I just recently finished my pre tests and was put on the list last Friday. We got the call the very next morning to head to the hospital in Madison which is 2 hours away. We arrived, I got checked in and my wife had to leave because of the no visitors due to the recent spike of covid. So she hit the hotel down the road and then my 4 boys all came from every direction. They gave us an OR time of 4 am Sunday. Around 3 am they came for me, drilled a few more IV spots and then we waited. It was almost 6 when the Doctor came in and said it wasn’t going to happen that day. So we started out of the shoot with the infamous dry run. Was released on Sunday at noon but we stayed for an appointment that was scheduled for Monday for another 6 minute walk. Afterwards headed home and just as we got home my Doctor called and wanted me back to be hospitalized so they could monitor my condition. So now I am here waiting for transplant. Hopefully coming soon. And yes, that acid reflux probe is not at all very comfortable for 24 hours. It feels like you have something stuck in your throat. I pray for you my friend that you make the list and we both are on a road to recovery.

    • #27411
      V.R. Peterson
      Participant

      @bill-jones, I wish you well on your transplant journey.

    • #27413
      Colleen Steele
      Keymaster

      @bill-jones I’m so sorry that you experienced a dry run. It is a hard thing to go through. I’m sure you were told that at least a dry run bumps you up higher on the transplant list. I’m going to pray that you get the “real” call soon.

      I’m also sorry to hear you ended up in the hospital waiting for the call. That is what I prayed wouldn’t happen to my son but it did. He was hospitalized for several weeks but we were holding on to hope that he would eventually be discharged. During rounds one day a doctor broke the news that he would have to remain in the hospital and wait for transplant. The very next day he received the call. Fingers crossed it happens that fast for you too!

      Needless to say, I will keep you and @exjarhead57730 in my prayers. Steve, I hope your first call will be a go and not a dry run. If it happens, don’t lose hope. Here is a column about my son’s experience with a dry run in case you and Bill would like to read it.

      My Son’s Transplant Experience Taught Me That Practice Makes Perfect

    • #27416
      Bill Jones
      Participant

      @colleensteele thank you for your response. I remember reading your article before but it was sure worth the second read tonight. Hoping this goes fast for myself as well as Steve assuming he made the list. I know I’m ready more than ever.

    • #27423
      Jen Cueva
      Moderator

      Oh No @bill-jones, I am sorry to hear of the dry run this time. I hope and pray that your new lungs will come soon. I can only imagine this must be on you and your family. Thinking of you and your family and keeping you and @exjarhead57730 in my prayers.

      Please do keep us posted when you are up to it. We are here to support you. If your wife wants to join, that may help her to have some support too.

    • #27803
      Colleen Steele
      Keymaster

      @bill-jones and @exjarhead57730, how are you both doing? I’ve been keeping you guys in my thoughts and prayers! Please let me know if you have any questions or concerns regarding transplant. Maybe I can help through my experience.

      I don’t want you to participate if you aren’t feeling well, have the energy, (or maybe recovering from transplant?)….but I was wondering if either of you would be interested in contributing to “30 Days of PH”? If you can message me your e-mail addresses I will send you the details and instructions.

      Wishing you both well!

    • #27804
      Bill Jones
      Participant

      Hello Colleen. Well it’s been 4 weeks since my dry run on September 19th. No match as of yet, still waiting. They are closely monitoring my oxygen levels as well as keeping up with walking and cardio rehab to stay strong for the post transplant. This is the worst time to be hospitalized with covid lurking. No visitors still. Though we talk a few times a day, I haven’t seen my wife or any of my children for a month now. It is very lonely eating all your meals alone. Hopefully it will be soon.

    • #27805
      Colleen Steele
      Keymaster

      @bill-jones my heart goes out to you! I would have been so upset if I couldn’t remain with my son while hospitalized and waiting for the call. Policies keep changing and vary from state to state. When my son was admitted last month I was allowed to stay with him as long as I remained in his room. If I left for even a few minutes then I wasn’t allowed back for 24 hours. In the middle of the week I went home once but otherwise I stayed. It felt like I was being held captive but I was grateful that they let me stay.

      I wish words could help the situation but I know they can’t. Please reach out any time you need a listening ear. We are all here to provide support. I’m keeping you in my prayers.

    • #27815
      Jen Cueva
      Moderator

      Oh, @bill-jones, I am so sorry. Things must be frustrating at this time. It must not be an easy feat not to see your wife and children. I am grateful that they are keeping you active and ready for when that call comes in. Please know that you are on our minds and in our prayers. I am sure words will not help but know we are here to support you on this new journey.

    • #27970
      Jen Cueva
      Moderator

      Hey there, @exjarhead57730 and @bill-jones, I am thinking of you both. How are things moving along for each of you? I just wanted to say you are thought of, and we are here to support you both through this new journey.

      Hugs, prayers, and positive vibes are coming your way from Texas. Let us know how we can best support you.

Viewing 15 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2020 All rights reserved.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account