James' edema is a significant concern. This accumulation of fluid has a negative impact on his respiratory system (in addition to the function and regulation of his other major body systems). James' fluid balance continues to increase. There are challenges to the process of duiresis for a number of different reasons. James' creatine levels have been steadily increasing to the extent of renal dysfunction, or in the least, it is an indication of the potential for renal dysfunction and failure. This creates a barrier to intervention for duiresis.
Similarly, James' has been demonstrating signs of liver toxicity and liver dysfunction. He has had on-going and serious episodes of myoclonic muscle spasms, along with frightening episodes of delirium and hallucinations. It would be painful to even make an attempt at describing these episodes. There are no words to describe the distress. There have been several changes to James' medication in hopes of a positive improvement in all regards.
Finally, James' lungs present with the appearance of Primary Graft Dysfunction. According to my understanding, Primary Graft Dysfunction is a form of injury to the lungs (rather than a form rejection). This can be the result of the length of transition period during the operation, in addition to other recipient and donor factors. Of course, James is a rare case. It is difficult to make comparisons for a re-transplant patient on ECMO pre-transplant.
We have hope that James will continue to move forward. We expect these challenges along with the need realistic expectations, but I am also not ready to let go of fears for the future. James has incredible amount of fight and determination. His motivation and drive to survive will be his strength in the coming weeks.
Thank you (again and again).
Love.
Love.
Love.
If we have learned nothing else, it is that James is a lover of life and therefore a warrior engaged in claiming it for himself, and his true love - Miss Adena!
ReplyDeleteWe have also learned that this business of transplant is a complex process, where no two experiences are alike...where each patient's progress is filled with unique reactions to
- the surgery itself;
- the graciously donated organs;
- the cocktail of medications designed to assist the patient in recovery and acceptance of the new organs;
- being confined (to a bed, chair, room, unit and the hospital at large, as progress permits an increasing boundary)
- being on hold to recover while the rest of the world marches forward without you
- not being in control of your days & nights
Fervent prayers for a sense of calm & peaceful rest tonight - for both of you!
love, love, love and hugs
You are right, James is a lover of life, and of course, of love. The day before transplant, James told me that the most important lesson of his life was the importance of empathy and love. He wishes that the world would love more. He has so much love to give, and he sees that love in everyone else.
DeleteIt is a complex process. We will get through it. I'm searching for that calm and peace. Thank you, Pam. Love, love, love.
Sending you HUGE hugs from NY. Keeping you and James in my thoughts.
ReplyDeleteHugs right back at you. Thanks for keeping us in your thoughts. We appreciate it more than you know!
DeleteOh, my dears. So much love going out to both of you right now. As someone who lives with both pulmonary hypertension and congestive heart failure, I know all too well about maintaining that delicate balance of medications. You both make me so proud to be human right now, words cannot describe...big hugs.
ReplyDeleteI take all the hugs I can get. I'm also feeling short of words these days. Hugs right back.
DeleteSuch sad news, and maddening news as well. I know a lung transplant does not cure you but give you a better quality of life. But James is such a fighter he deserves a life. The hallucinations and delirium are normal, I had them very bad as well. Plus I also had them for quite sometime. I was making very unusual remarks, and saw things that weren't and had unreal thoughts, then I got really mean and mad, Tim did not even want to come in. I know one nurse was getting after one of the Docs about my meds, saying they were too high because of hallucinations. Eventually this all passed. But, as I say I was way out there, thought Tim came to see me in a boat, saw a baby carseat on ceiling, thought I had an ice cream and was enjoying it, nurse were partying, rats were in room, the list goes on, so just to relief you it is scary but it's not James, we really think these things are happening. Sending my prayers and love to you both.
ReplyDeleteThank you for your prayers and love. It is all part of the process. It is just as frightening for James, and I hate to see him experience any level of distress, but I know that James will heal. Thanks, Crystal. You and James will have to swap hallucination stories.
DeleteWe love you both. We're all thinking of you both. Thank you for being so open with your updates. I think I can safely say I speak for almost everyone when I say we all know this isn't a magic trick: there are complications, there is pain, recovery, illness, and this is a long road. But we're also looking at the large picture as well, which is that he's been given this amazing chance and where he is *today* has a better, more positive outlook for the future than where he was just two weeks ago. So when we're all sending such positive, euphoric messages, that's the part that we're talking about.
ReplyDeleteHow are you doing through all of this? With all this talk and focus on James' illness and recovery, I feel as though you may be left alone in the dark with your fear and your pain. I don't mean to diminish what James is going through (you know me, I would never), but I do want to make sure there are people there for you as well. Is your family there? Are they able to give you the space to breathe every so often as well? I cannot cannot cannot stress how important that is in times like this. You need your strength too... and not just for you, but for James as well. You know he'd say the same. Your love is enduring and truly beautiful, and it makes me cry in joy to know you have each other. Please remember to take care of yourself through this. To take a walk and take a breather is NOT a betrayal, it is part of the process, and a lucid James would be shoving you out to ensure you got the opportunity. You KNOW I'm right. We all love you. <3
Yes, yes, yes - what Heather said! x 2
DeleteThat is why we hunt Adena down to fill her up with hugs and
That is why Adena must come to Breathless Buddies Game ON & Potluck...
jus sayin!
Love, Hugs & Amen
How am I doing? That is a hard question to answer. Sometime, I do feel alone in the dark with fears, and pains. There is a lot of sadness. I ache for James to be well enough to comfort me. I am coping to the best of my abilities, and doing everything that I can to take care of myself, for James, and for myself. It is not easy, and I know that it won't be for a while. I feel your love, and I appreciate your love. Thank you for embracing me.
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