To Be Or Not To Be

A month ago I came closer then ever to my life ending, due to fluid building up around my heart and lungs.  Frantically and emotionally I rushed to complete my instructions for how my family should make decisions for me if I became incapable or if I didn’t make it.   I was scheduled for the first of two surgical procedures to keep me alive, and I had ominous doubts about the outcome.  That night I insisted on leaving my hospital room at ten o’clock at night to go outside and have an hour to look at the stars, listen to the sounds of the night, and pray for the grace to surrender to the possibility that I might not survive.  I was alone, being supported only by the wings of the angels, arms of my ancestors, and hands of the Divine.

Now I am fighting to get back on track and move forward.  Addressing the constant stress of trying to stay afloat financially, bills piling up, and lowered immunity led to a painful case of shingles in the last week.  Survival.  Now it’s about basic survival.  Many brushes with losing my life this year have raised questions.  Questions I never thought I’d have to face, let alone answer.  What does it take to survive?  Is survival enough?  In the darkest, most miserable moments, how do you survive?

The septicemia in December certainly did its damage.  The adipose stem cell treatment from the month prior did help save my life by strengthening my immune system enough to beat the infection.  Yet, I wasn’t the same.  My body was left weaker, off-balance, depleted.  I realize that many people don’t survive such a serious infection, and I’d had blood clots blocking my jugular vein at the same time.  A double-whammy.  Additional damage to my kidneys had been done, and all the ground I’d gained from the stem cell treatments was lost.

Another infection of that magnitude would certainly mean the end of the road.  I needed to make big decisions and changes.  Future stem cell treatments had to go on the back burner; staying alive became the priority.  In May, with prayers in my head and heart, I had surgery for the implantation of a peritoneal (abdominal) catheter.  Although I made the transition to peritoneal dialysis for the right reasons, continual complications and multiple hospital stays have been the result.

More changes are in the works, as I take the first steps towards my other option:  a kidney transplant to save my life.  Why haven’t I pursued getting a transplant sooner?  A mandatory waiting period of at least two and a half years prevented me from doing so, because of treatment of skin cancer on my back (melanoma).  I’m making the best of each day, and in the dark moments of anguish, despair, pain, and fear, all I can do is dig deeper, lean on my faith and the reliable support and love of my friends and community (local, global, & online) as I decide how to be or not to be.  One moment, one breath at a time.

More changes are in the works, as I take the first steps towards my other option:  a kidney transplant to save my life.  I’m making the best of each day, and in the dark moments of anguish, despair, pain, and fear, all I can do is dig deeper, lean on my faith and the reliable support and love of my friends and community (local, global, & online) as I decide how to be or not to be.  One moment, one breath at a time.

Clowning around and making light of a serious situation.

Clowning around and making light of a serious situation.

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8 Comments (+add yours?)

  1. antoniusdollarius
    Nov 03, 2014 @ 16:00:11

    Glad to see you’re smiling!

    Reply

  2. Joyce Pavlicek
    Nov 03, 2014 @ 17:01:12

    Jenny, so glad to read a post again from you although I realize that it been a rough go for you lately. Sometimes it makes us wonder how we have the will and drive to continue the struggle doesn’t it? I have been battling leukemia since 2008 and while I tell everyone it is the “good” kind, it is not without it’s challenges. The thing that is the most frustrating are the satellite problems that go along with it. Fatigue, terrible body weakness and aches and pains, infections, etc, etc.

    You are an inspiration in that you continue to forge ahead, looking for the best possible outcome and staying as positive as possible. But, I know you must have those days when you just want to just let go and give up. I do and it is the one thing that one must constantly fight against. I keep saying that I cannot check out until I get everything in order so my family won’t have to deal with it. Then I seem to delay or take too long to do just that, wondering if sub-consciously I will drop dead when I file the last piece of paper or clean the last closet. LOL!!!

    While one is ready on a certain level, and I have no fear of “the end”, I am not yet ready and will continue to greet each day ready for the “fight”.

    Stay strong and know that you are loved by many that know you and many that have met you only via the big Internet in the sky!

    God bless you and keep you strong,
    Joyce

    Reply

    • jennysvie
      Nov 04, 2014 @ 13:08:00

      Joyce,
      Any type of chronic illness is very debilitating and exhausting. I haven’t blogged about it, but I turn to alternative medicine for the “satellite” problems. They really work well to support the body and immune system. I rarely have days when I want to throw in the towel, but I do have many “dialysis sucks” days and moments. I have many days, during which I’d like to thrown the dialysis machine out the window, LOL. I remind myself to think positive thoughts as often as I can, and I repeat positive statements to myself every day. Keep up your fight!! I hope I inspire you to keep going, and to find happiness in what ever ways you can. Blessings, Jennifer

      Reply

  3. Karen Smith
    Nov 03, 2014 @ 19:40:34

    I am glad to see you back. Have read your FB posts and your blog from the beginning. You have certainly been a huge inspiration for many!! I know you will stay strong and keep fighting! In February I gave my kidney to my son. Wish I had another one for you. By the way, you probably already know that your writing skill is terrific! God bless you!

    Reply

    • jennysvie
      Nov 04, 2014 @ 13:10:23

      Karen,
      Thank you for being a Living Donor for your son!! Would you mind emailing a bit about your experience with that? Email to: jennysdoodads@gmail.com. FYI – this last post took days to write. I often write a lot more, and then work on condensing it down for the blog. Jennifer

      Reply

  4. Craig
    Nov 04, 2014 @ 01:14:43

    I am sitting here trying to put down in writing what I want to say, but my words seem so small in comparison to yours. Just know that you inspire me. Your suffering is not in vain; your willingness to share your experience means a lot to me. Thank you.

    Reply

  5. Craig
    Jun 02, 2015 @ 18:19:37

    Hi Jenny… I was just wondering ho you are doing these days. I miss reading your inspiring updates.

    Reply

  6. Joyce Pavlicek
    Dec 01, 2015 @ 12:30:15

    Hi Jenny….. I have not seen anything from you in such a long time. Just know that you remain in our thoughts and prayers and we hope to hear from you soon. Just a few sentences would be great!

    God Bless…….
    Joyce

    Reply

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