Wednesday, February 7, 2018

IWSG: Diving Into Dialysis

                                                                 

It's time for another edition of the Insecure Writer's Support Group. Be sure to visit Alex J. Cavanaugh and the rest of the talented writers who are always willing to lend a helping hand.

          
                                                           
My brother took this photo during one of his frequent visits to dialysis.


January got off to an unexpected start, as I began undergoing dialysis due to a hereditary condition known as polycystic kidney disease (PKD). Though I inherited the disease from my dad, and my brother underwent a kidney transplant about 13 years ago, I was surprised when my doctor informed me that my kidney function had decreased to 7%.

The good news is that the dialysis center is less than five minutes from home, and the nurses have been wonderful. The bad news is that it could take a few years to receive a matching kidney for a transplant in Illinois and the same is true for nearby Wisconsin.

A friend told me a CBS News story about a dad who went to Disney World wearing a T-shirt announcing that he had five kids and needed a kidney transplant. His blood type and cell phone number were also imprinted on his T-shirt. 

He met a man at the theme park who offered to take a photo of him to post on his Facebook page. The photo went viral, and the dad received thousands of responses. Months later, the dad received a new kidney and a friend for life.

 I told my friend that I was thrilled for the dad of five, but I'd prefer to have a dead donor.

Concerned Friend: Well if I live one knocked on your door and offered you something workable, would you turn it down?

Me: That's a tough one. How would I ever be able to repay the person and what if he/she had complications from the surgery? I'd feel horrible for him/her and their family. So I'd rather not be in that position.

Concerned Friend: Sometimes people do things without wanting anything in return. I'm not saying that I'm one of them, but that happens.

I decided to nip this conversation in the bud.

Me: The truth is, I just don't want to have to be nice to anyone.

For now, we've agreed to disagree and my friend still hasn't given up on me.

 I'm  grateful that my family has been so supportive. My older son has been calling hospitals to find out about donor lists and researching websites, and my younger son has made the ultimate sacrifice by finally friending me on Facebook.

Additionally, my husband/caregiver has been constantly by my side driving me to appointments,  talking to doctors and bringing me my favorite foods. Oh, and he even offered to donate a kidney, but then I'd never be able to win an argument.

My treatments are three hours, (a total of four hours start to end), three days a week, and after a few more months I might reconsider my options.

In the meantime, I take comfort in knowing that I don't have to worry about being too nice.



18 comments:

  1. I'm glad you still have your sense of humor, kiddo. But even though you don't want to be "nice" (HA! As if you have a choice!) to anyone or to be beholden, I hope you reconsider the idea of a living donor. A friend of my turned out to be a perfect match for her husband, and she donated a kidney to him a few years ago. I mean... is that a miracle or what??? They are BOTH doing great and their love has never been stronger.

    Sending love and hugs your way. Wish I could do more.

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  2. Sometimes, worrying about being too nice is just too much when we're going through health issues. I hope things work out and you get the kidney you need. Hugs!

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  3. Hi Susan! How wonderful that your friend was able to give such a generous gift to her husband! When we first talked about it, my doctor said that we would both need caregivers afterward. So my brother suggested we become roommates in a nursing home together. I never say never, but for now I'll try to get on more lists. Thank you so much, Susan!

    Chrys -That's right! It's better to worry about more important things! Thank you, Chrys!

    Julie

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  4. You sound like you're in good humour, but then you could also be making a supreme effort. Whichever it is, I hope things go well for you.

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  5. Being nice and then being gratefull have a lot to say about life. Give someone the gift of helping you.

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    1. Hi Susan! Being an organ donor is a gift that many people can give and they don't have to be alive to do it. That would be my first choice. I may feel differently a few months from now, but I'll sit tight for now. Thank you, Susan!

      Julie

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  6. >>... "Me: The truth is, I just don't want to have to be nice to anyone."

    HA! That made me chuckle. (GEM JULIE, when did you become your Mom?)

    I have a friend who also has major kidney problems. I think her kidney function had gotten down to 15% when she started getting UV Light treatments to her blood in conjunction with something called Foot Zoning.

    In a very short time, she has begun improving quite a bit, and her kidney specialist was even shocked that her kidney function has actually been improving. Apparently, once kidney function gets that low, just trying to maintain it is the goal, as improvement almost NEVER occurs.

    So, that's my long-winded way of saying maybe you might want to look into those two treatment methods.

    Keep that positive attitude and sense of humor flying high, Julie!


    ~ D-FensDogG
    Ferret-Faced Fascist Friends

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  7. Hi there an so glad you retain that sense of humor. This will take you far. Be nice. Stay grateful. We're here to help!

    February 2018 IWSG Co-host
    www.stephentremp.com

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  8. Jemima - Maybe a little bit of both! Thank you Jemima!

    Hi Stephen! I guess I am turning into my mom! I'm glad that your friend is doing well, but I've never heard of those alternative treatments. Thanks for making my day, Stephen!

    Stephen Tremp - Wise words! Thank you so much, Stephen!

    Julie

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    1. GEM JULIE ~
      In my 58 years of open-mindedness (well, maybe not for ALL of those years ;^) and extensive research, I've come to the conclusion that nearly all Common Knowledge is wrong. (Actually, most of it is a lie, but I'm giving the benefit of lotsa doubt and just calling it "mistaken".)

      So, it surprises me not a whit that far less expensive alternative healing methods beyond dialysis are not well known nor encouraged.

      The day before yesterday, I got a text from my friend who is undergoing the Foot Zoning procedure (and UV-Light Blood Treatments) for kidney function. Here is what she wrote after her 5th Foot Zoning treatment:

      "Foot Zoning was great, so great I spent the rest of the day running around doing things that hadn't gotten done in a month. Even went to a Writers group last night."

      I mention this only because I do care about what happens to you and because I seriously think you ought to do a little research into these alternative therapies.

      I won't bug you anymore about this. Just consider me to be a "witness" -- the "first witness" -- for these things. Now, should you somehow find Foot Zoning and UV-Light Blood Treatments coming to your attention again in a fairly short period of time, that will be the "second witness" letting you know that this information is coming to you from a Higher Level.

      Keep up that positive attitude, my friend!

      ~ D-FensDogG
      STMcC Presents 'Battle Of The Bands'

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  9. I hope your treatments go well and you get the donor you need, sooner rather than later.

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  10. Gosh Julie - I'm so glad you're so cheerful about it - and I hear you re your son ... and his 'decision' he needs to get on FB! You are being looked after ... and having your sense of humour should help loads ... just take care and I'm sure things will work out - all the best and with thoughts from above the border ... Hilary

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  11. Julie, your sense of humor is still going strong! I love that about you.
    I hope your treatment goes well and everything works out for the best.
    Stay positive.
    Take care of yourself.

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  12. How very brave you are. I know how much effort it takes. With love.

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  13. Shannon - I really appreciate your good wishes. Thank you, Shannon!

    Hi Hilary! You're one of the most positive people I know! I agree that we must never lose our sense of humor, as it helps keep us sane! Thank you, Hilary!

    Michelle - You have a great sense of humor too! Thanks so much for your kind words and good thoughts! I was hoping this experience would give me more time to catch up with bloggers like you, but I have to leave my right arm (access arm) perfectly still during treatments, and it's too hard for me to type with one hand. Thank you, Michelle!

    Carole Anne - I'm really not that brave, but it makes me feel good that you think I am. Hope you're doing well, Carole Ann! Thank you!

    Julie

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  14. Knowing someone who recently lost a daughter due to a lack of available lungs...I'm going to step out on a limb here. Please know I understand I could never presume to know what is right for you. But your post reminded me that I read something recently about "paired donation"...where, someone who doesn't match with you donates anyway, their organ goes to another, while yet another donor's organ, could go to you. By allowing a friend to donate on your behalf, it could have far-reaching ramifications for others also seeking transplants. Here is a link to the article: https://www.bostonglobe.com/metro/2018/01/06/unlikely-gift-creates-unlikely-friendship/YBFdZdrgZMBqeqoktCAzXI/story.html
    In the meantime, please know that I am wishing you strength and good health.

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  15. Oh, Julie, I'm so sorry. I'll be saying the Mishebeirach for you and sending all my good vibes that a donor will be found. I'm happy to see that you look smiley and lively.
    Love, strength, and tenacity in abundance.

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  16. Liza - I'm so sorry about your friend who lost her daughter. I've heard about "paired donations" and I think the paying it forward idea with organ donations is incredible. Thank you for sharing the link and I really appreciate your kind words.

    Robyn - I'm sorry that I've been so bad about keeping in touch, and it always makes my day when I hear from you. Thank you so much for your prayers and good wishes! National Donor Day is on Valentine's Day, so something good does come out of your least favorite holiday!

    Julie

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