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Tuesday, August 27, 2013

Holy Crap!!!

Such a scary time! Holy crap!!

I'm in the midst of being evaluated for a lung transplant. I've been in and out of the hospital doing tests for the past month, meeting with all sorts of doctors who are checking on the status of pretty much every organ in my body to see if I'm essentially "healthy" enough to go through such a complicated and risky surgery.

After meeting with the doctor today I am utterly confused and lost.

I was happy to report the news that I am feeling much better and stronger, that my lung pain, body aches, and cough are gone and that I am a bit less short of breath. Every time I know I'm about to visit a doctor, I build an invisible protective shield around myself and do all that I can to preserve my positive mindset, being that what they say can very quickly drain anyone of all hope. I realize that they're trying to help, and am grateful for that, but somehow I always leave their office with a strong urge to jump off the Empire State Building!!!

Today was no different. I went in there not confused and left there completely lost. My invisible protective shield didn't hold up very well.

The idea is that, although they cannot confirm the diagnosis, the doctors seem to all believe that I have a very rare and terminal lung condition called PVOD (Pulmonary Veno Occlusive Disease). In order to confirm it, I would need to do an open lung biopsy, a procedure which I'm currently not healthy enough to undergo. As a result of this, they feel that my best bet for prolonging my life is to undergo a lung transplant. The issue there, is that the life expectancy is not very promising, and there are millions of other problems that could arise as a result.

My argument was that since I feel so much better, why would I rush into a procedure that is so unsafe and potentially life threatening in itself. Their thought is that my condition will not improve, and will eventually lead to heart failure. If in fact it is PVOD,  "eventually" would come sooner than later. They believe that since I am stronger and feeling better, that this would be a perfect time to undergo such a tough surgery. My chances for survival would be greater.

I'm sitting here not knowing what emotion to have. This whole experience feels so incredibly surreal. I kind of feel like I should just rip off my oxygen, go have glass of wine (really a bottle) then move to Hawaii and pretend that this was all just a terrible dream.

I am going to have to make a decision very soon as to how I'd like to proceed.

Although the doctors wouldn't be with me on this theory, a large part of me believes that somehow my body is healing itself.  As a result, it feels counter intuitive to go through with surgery at this point. The other part of me is scarred shitless that if I don't go through the surgery I may not be around for very long. Right now, the emotion that is in the lead, is the one that feels like I'm healing and therefor should hold off on being listed for a transplant.

What a crazy time! I'm going to think and think and think and feel and feel and feel and let my body help me decide what to do. In the mean time I shall sip on my green juices and pray!!!

Thank you so much for reading this and for being with me on this journey!



  1. I hope you get well soon. One or the other way. The world is just a better place with your beautiful voice in it.

  2. Seems like the operative word here is "afraid." The doctors are afraid that you may have PVOD, afraid you may need a transplant, afraid you may not be healthy enough when a donor becomes available.

    Looks like you are going to have to be the strong one in this atmosphere of fear. With that said, I don't see any problem with being on a transplant list, if you are still not convinced at that point, then don't submit to the transplant.

    The technology changes rapidly and so do the recommended treatments -- especially on a "suspected diagnosis". I can't help but think that time is your friend on this one, especially if there is a chance you've been misdiagnosed.

  3. Chloe, .. here's my "two cents" .... First, let me say I have NO idea how you must feel. After watching my Father pass, I learned that NO ONE knows, until THEY are there. However, I think you should give the 'OK' to the transplant. I have a friend, who's son had a double lung transplant in March. Then four months of intensive rehab. Today, he is healthy! "Guarded", of course, with more rehab to go, but is feeling better than he's has ever felt! I believe SOME of the wellness you feel before seeing the Doctors, and SOME of the confusion and emptiness you feel after talking with them, is emotional. It human nature. The toothache that was so bad the night before, somehow feels OK as you sit in the Dentist lobby. I am VERY happy to hear your pain is much less, you are breathing better, with less coughing. I believe the things you are doing are helping. Perhaps you can become healthy enough for the open lung biopsy. What would be your treatment if they confirmed PVOD? Anyway ... I know from my friends experience it will take time to set up the transplant. In the weeks, perhaps months, of this prep time, continue to do the things you know are making you better. If you get healthy enough for the biopsy, there may be many options - either way, felling better is BETTER! But plan on the transplant. You have so much "heart" .. you are a very special, and very talented Lady! I wish I could take this from you. But all I can do is let you know I'm here, and I wish you the best, everyday. Bless you, my friend.

  4. Howdy Chloe! I am a PH patient, today marks 4 years for me. My main problem is getting my BMI down a bit more before they will list me. I have passed all the other tests easily, and many of my transplant team are amazed at my ability to walk, talk, and get out of bed. I have lost about 83% of my total lung function, and my oxygen flow is now between 6&8 lpm to keep my O2 reading in the 90% range.
    I feel the best two things going for me is having Christ in my heart with all the prayers being said for me; and my own positive attitude towards my fight for life.
    I recommend you simply look inside your own heart... and mind, to find out where YOU are on this fight. Educate yourself as best you can, as you stated that even your own doctors aren't sure exactly what type of PH you have. There are amazing miracles being done in the medical field concerning the lungs and heart almost every day it seems.
    You will be in our prayers every night. I am sure you have met others at the hospital with likewise situations. I love your "E Cylinder" idea of calling it Steve. I need to do that with some of my pictures as well and come up with a name for them. Thanks for that great idea!! I will of course share your music on my Facebook if that's cool with you.
    Take care Ma'am,

  5. Lew,

    Thanks so much for all your kind words and for keeping me in your prayers! I truly appreciate it! I'm sooo sorry to hear that you're going through such a tough time.

    I so hope for you that you're able to have the transplant soon and that it all runs smoothly and perfectly.
    You're so right about advances in the field (I'm learning a lot at the seminars.)

    I know that doctors don't usually discuss diet, and you may already be focused on that but I have made some BIG changes and have noticed a HUGE difference in the way I feel and in my stats.
    I've removed all meat and animal product, (milk, cheese...) Essentially I'm vegan- never thought that that would happen.) Along with massive amounts of vegetables, grains and beans, I've been eating the rind of the watermelon for the L-Citrulline (great natural dilator of the arteries.)

    Just figured I'd let you know what I'm doing in case it could be of any help to you.

    Wishing you the best of luck and definitely keep me posted!