Tuesday, July 23, 2013

Second Breath

Five years ago, just a few months before Joe and I were married, his sister's life was forever changed when she was diagnosed with a lung disease called Pulmonary Hypertension. As someone who also has incurable diseases (though nowhere near as devastating or serious) I have an inkling of how that must have felt, having your doctors tell you it's only going to get worse unless we manage it.

Three weeks after her diagnosis, we got a call that she was in the hospital - she had suffered a stroke and was in the ICU. At 30 years old. Needless to say, there was a lot of emotion; a lot of fear and concern and questions. Tara recovered but complication after complication arose and her condition continued to get worse despite all the efforts of herself and her doctors.


Hubster and his sister at our wedding.

This isn't something I've written about here before, because it's a very tender subject for my husband as well as his family and I have been respectful of their feelings by not sharing everything with the world at large. No one has asked me not to blog, it just felt... intrusive. While I'm a part of the family and I love and worry for Tara, it never seemed like my tale to tell. It still doesn't, really, but with recent developments I want to get her story out there in order to help her and hopefully educate others about this disease. Because not a single one of us had ever known it existed until Tara was diagnosed.

You see, a few months back, Joe got off the phone with his sister and was white. Now, my husband is not a terribly emotional person (which is good, because I am and it balances out) so when he is whiter than a fluffy summer cloud in a blue sky, something is tremendously wrong. He told me the doctors had given Tara 5 years maximum at the rate at which her disease is advancing with decreasing quality of life as time progressed - she'd be dead by 40. But hope was present in the form of a dangerous and incredibly invasive procedure; a lung transplant. Needless to say, Tara had a monumental decision to make.

The one thing, that has stuck with me throughout this ordeal, the one thing that blows my mind and humbles me... is how incredibly upbeat Tara is. Before she got sick, Tara was hands down one of the chattiest, bubbliest people I've ever known. Ever. We worked together for a little while; she was my boss and I was seasonal help and yes, Joe and I were dating at the time, and she was ridiculously kind and helpful to even the nastiest customers. And when you work in jewelry, there are a lot of really nasty customers! She also may or may not have been the sole reason that Joe was able to afford the perfect (for me) engagement ring, but whenever I asked her about it she would just grin at me and say nothing. She's one of the most amazing friends someone could ask for and she'll tell you she loves you 100 times in one phone call; she's just that kind of person.

And throughout the last 5 years, right up until now, I can count on one hand the number of times I've heard her say 'why me?' or get down on herself and her situation. She's always got a positive spin to put on something: "Oh, yea, I have to carry this oxygen tank and have medication pumped in to my chest via this little machine now. But I can stick them in these pretty Vera Bradley purses so at least I'll always look fashionable!" or "Oh, that line site got infected. That's ok, I hated having it there anyway." And even when faced with one of the scariest decisions anyone I know has ever had to make, she was only upset for a brief period of time. And you know what, when faced with your own mortality at 35, I think anyone would be upset!

But her decision has been made. She's going to take her chances and get the transplant. She's been accepted to receive it and is now awaiting all the details; she is currently expecting to be listed by the end of this week for transplant. As you can imagine, there is a lot of stress involved with this sort of life decision.

While I can't help her more than just by being supportive with the emotional and physical stress, I can try to relieve the burden of financial stress from her shoulder. She deserves to have help carrying a weight that others can help her with. And so, she has started a crowd funding page on go fund me to accept donations towards the procedure and aftercare; because she will need to be in hospice care afterwards and will be on medication for the remainder of her life.

If you, my lovely friends and followers, would be so kind as to click the link below (also located in my sidebar) you can read Tara's story, share it via several social media platforms and donate, if you are able. Please don't feel like whatever you do isn't enough - if you send prayers, share the link or pitch in $5 it's tremendously helpful and appreciated, from the very bottom of all of our hearts. There's no end date for the campaign, so share as often as you'd like or donate when you are able. You can also share this post if you prefer.

I had someone ask me the other day when I shared on Twitter, what the point of only giving $5 was - since they couldn't give more. I pointed out that throughout all of my social media platforms, I have over 700 unique contacts. If just half of my contacts gave $5 each; that's $1750 and a large chunk of change that my sister won't have to worry about. If those 700 people each share and at least 1 or 2 people from each of their lists donates and shares... well, we'd be funded very quickly! Pennies do add up and in this case, pennies can help save a life.

Thank you all for giving me safe space to write about this, for listening and for helping out in whichever way you are able to do so. It feels strange to ask for this sort of help and it feels strange to tell a story that still feels so very surreal to me. She was diagnosed at the same age I am right now and I can only imagine how I would take that sort of news... probably with a lot of tears, screaming and angry fists shook at the heavens. I highly doubt I'd be smiling or upbeat.

Tara, you truly inspire me. I love you and Fuck PH.

6 comments:

  1. Great post; I am glad you shared it. It was just around this time some 14 years ago, I lost a friend to lung disease. She was maybe 50. She decided not to have a lung transplant. I am still not sure why... but then she changed her mind shortly before she died.

    I am glad Tara is going for it; she sounds like an excellent candidate with a great outlook.

    Mario

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  2. Danni, it is good you shared this post, not just for the monetary donations, but also for the combined positive energies that will begin to stream towards Tara from all over the place. You are a loving sister-in-law; hugs to you and Joe.

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  3. Living in a country with publicly-funded health care, I can scarcely imagine what it must be like to face this kind of life-or-death decision, knowing that choosing to live could financially cripple your family. If my few dollars can help buy Tara new lungs and a second chance at life, I'm honoured to be able to help.

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  4. Tara is an inspiration to us all with her courage and her wonderful outlook on Life. Sending positive energy her way. ♥

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  5. Tara is truly a shining star. The updates on her Go Fund sight are informational sure but also very personal and upbeat. You are so right that every little bit helps and I would be honored to share your post today on Olde Baggs. Let's get this effort funded and help Tara and family not have to face the medical aftercare costs. Thanks Danni for once again being such a goodie. Smooches and Squoozes, Oma Linda

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  6. Hi ;o) I come from Oma Linda's blog ;o) I'm sending Tara positive energy and lots of healing prayers ;o) I will be donating, right after, I write this. Big Hugs ;o)

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