Wednesday, January 26, 2011

The Clock is Ticking

Lately, it's been more difficult to breath. When I was discharged from the hospital in December, I was surprised how well I was doing after I was through with the pneumonia. I'm finding out now that the secret was the high dose of prednisone I was on. I was discharged on 60mg- now I'm down to only 20mg. With each tapering down of the drug every two weeks or so, my breathing has become progressively more labored. Now, I'm using oxygen more than I was just two weeks ago. I'm becoming exhausted from doing things as simple as putting on my clothes and making my bed, things that I had difficulty doing immediately before I was transplanted back on November of '08.

It's not quite as bad as it was then, however. My weight is better then it was. Right now, I'm about 113lbs, where I was about 95lbs before the transplant. I wonder when my doctor's are going to actually mention re-transplantation...

When I was first told that I had chronic rejection, amazingly, I wasn't depressed. The biggest questions on my mind were what was I going to do with whatever time I had left, and how was the family going to react. That has always been difficult ever since it became my responsibility to break bad news concerning my health to people, watching their frightened and anxious responses, and fielding the questions. How do they treat it? Can you be re-transplanted? What are the odds that you'll get matched a second time? And the crying and worrying. It sounds like a dick thing to say, but I don't mean it to sound like Oh great! They're crying. but I, in particular, have always had a hard time knowing how to react to that, then compounding my anxiety is that I don't have anything honest to say that could ease their mind. In between it all, sometimes I feel like I don't have the time, nor the right, to be upset about it. Lately, though, I have been.

During my pneumonia I spend a lot of time listening to The Beatles' "In My Life" and regretting how I've failed to make more of my relationships. I also felt like I hadn't been brave enough in pursuing my goals. Granted, I didn't really know what those goals were. Things have become much clearer to me now, but I may not have the opportunity to do anything about it now. I can only hope.

I figure, if I am fortunate enough to be transplanted a second time, I owe it to myself to do something brave and dangerous. I don't mean physically dangerous like jumping out of an airplane or climbing the side of a sheer rock wall without a harness. I mean dangerous like go off with whatever money I may have, whatever possessions I can carry, and try to make it. I only got about 2 solid years of health of out this transplant (granted, they are two years I would not dare trade). I don't know what will happen if I get another new set of new lungs. I figure, I need to make me happy and I don't want to die not having tried. understandably, I played it safe; assuming I had more time than I did. Not again, though. Not again...

There are two things I desperately want to do if I get the opportunity to- Write a screenplay and finish my associates degree in journalism and then go on to study either biology or physics (OK, maybe three things). Plus, I need to quit worrying so much about being myself. I care about my family and their opinion, and that's normal, I'm sure; but, I can't afford to continue on like I've been. I think I've earned the right.


  1. Okay, first of all, I love the name of the blog! How many times have we all said/thought that?

    Secondly, you've more than earned the right to forge your own've earned to obligation to do so.

    If possible, release the worry from your agenda...what a waste of energy. Use that energy to write, study, and plan. You'll get much further!

    Seriously, I use a meditation called Inner Smile to release negative emotions we hold in our organs. Let me know if you want more info on it.

    Love, your meddling, doddering old great aunt. ♥

  2. Hi Josh,
    Saw a note about your blog from Brandon Dennis on FB. My name is Tom Nate, a fellow txp survivor from San Antonio, TX. Great blog post by the way. I wanted to write because I have been where you are. My first txp was in May of 2007 and exactly one year later I went into Chronic rejection. I asked my doctors to qualify my for retransplant in Aug of 2008 and was approved. So I moved back to St Louis in Oct. 2008 to get on the list and wait. To be brief I waited 2 years with only about a 2% chance of a matching donor due to blood antibody issues. I did have one 3 month stay in ICU in early 2009 after resp. failure, kidney failure and cardiac arrest. When I came too after being out of it in ICU, I was on a vent and a trach and told I would be on it till I got a retransplant. So, I waited, got out of ICU and back to my STL apartment and waited. Finally this last Sept. 20th after waiting 18mos and being told no less than 3 times that I wouldn't make it 6 months, I got the call and rec'd. my 2nd double lung txp. Everything has gone well and I am back home in TX now as I write this. I am due back in STL sometime in the next month or so. Was supposed to be up last week but my white count was almost 0 so they postponed. Can't do a bronch w/ low white count. In fact, I have not had my 3rd bronch yet as my creatinine was out of whack back in Dec. right before the bronch.
    Like you, I have a myriad of thoughts, anxieties about my life both after the 1st txp and then now, especially. I've now had 2 txp and there will be no more! So what do I do w/ the time I have left. I only got 1 good yr. after the first one and like you, I would not trade it for anything. I have a lovely wife and a 9 yr old son. I'm still on disability and not planning to work just yet, maybe never. I am 56 yrs old so still have alot of life left in those terms but who knows in txp terms right? But I know I need to do something beneficial w/ the time I have left. I am working on notes to write a book or short story on my experiences these past 5 yrs in txp world. Don't know what I'll call it but it will be a story of 2 vastly different transplant experiences.
    Don't know how I was up in STL and at Barnes everyday, in support group mtgs. etc... and never came across you but there are so many of us now that its understandable. I will check your blog on a regular basis and keep up with where you are at. I have a question, have you asked your doctors if you can try to qualify for a retransplant? I just ask because in my case, when I got chronic, it went real fast and I lost all my lung function in about 3 months. I took every treatment they had and finally photopherisis stopped the decline in my lung function but when I was down to 16%! So I did not wait for the doctors to suggest, I actively pursued it. They said yes and had me come up for all the testing and I was qualified but they let me know it would be a long wait if I made it that long due to the antibody issue. Yet here I am today!
    By the way, my original diagnosis is Kartageners Syndrome w/ Bronchiectasis and Pulmonary Hypertension.
    Josh, you have the right attitude to make it through this and have another chance. If you have something to focus on what to live FOR, you can do it. My son is the reason I'm still here! He is the reason I perservered all those long days in that small apt. to keep waiting for the txp call to come. Now here I am, yesterday before the Super Bowl, I am out in the driveway building him his first basketball goal and shooting baskets w/ him once we got it up. I visualized that moment for almost 2 yrs while waiting! I don't know if your a spiritual person but I will tell you from my standpoint, my faith and the power of prayer for hundreds of people who were praying for me is is the reason I am still here. Keep fighting!
    Tom Nate

  3. Thanks for commenting, Nate. I'd actually like to have a conversation with you about your own experience, because it sounds like you've been through quite a trip (rarely a pleasant one, by your indications). If you can, e-mail me your e-mail address so I can write some more personal details (if you don't min); as well as ask you some questions about your experience.

    From the sound of it, it took a tremendous amount of sheer will power on your part to endure. Your story was really encouraging.

    Take care

    PS: How can we exchange e-mails in a non public way? Mine has my last name in it, and I'm trying to maintain a mild level of privacy concerning my identity.

  4. Thanks Josh for the post and thanks for setting this thing up so total strangers can see cool shit like the exchange between you and Tom Nate.

    Did you see the Little Fockers? We watched it last weekend. Owen Wilson's character had gotten some "alternative' medicine training. He was moving his hands around over the father in laws chest (Robert DeNiro) after a heart attack. As ridiculous as it was, or appeared to be, I reflected how I was just doing something similar to my own brother when no one else was looking.

    I'm waving these same hands around now (figuratively) over your lungs. Won't hurt anything.

    I know what Tom Nate is saying is true about your desire to stay alive. Have you started putting any of the basic ideas about the screenplay down? A friend of mine knows a movie producer who told him the other day he is looking for new ideas. Is there anything we can do to help?