Tuesday, October 2, 2018

IWSG: Oh Brother & Apology from a Bad Blogger

                                                     

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.  

                                                                  
                            Oh Brother & Apology from a Bad Blogger

I am grateful to all of the supportive bloggers throughout the years and apologize for not doing a better job of returning the favor. Though I have been experiencing computer issues over the last few months, I have also been trying to adjust to my new role as a professional patient.

I finally took my son's advice to increase my chances of a getting a new kidney by going out of state. I'm currently on a kidney transplant waiting list for a hereditary condition known as Polycystic Kidney Disease (PKD). The waiting list in Illinois is estimated between five and seven years, so my husband drove me to a hospital in another nearby state for an evaluation.

We were both impressed with the transplant team's thoroughness. Before the visit I had to have several tests to rule out everything from heart disease and cancer to a special evaluation from my dentist. After the visit I had to follow up with more tests. 

I wanted to get everything over with, so last week I saw doctors Monday, Wednesday and Friday, and underwent dialysis treatments Tuesday, Thursday and Saturday. Hence, I became a professional patient. Fortunately, the tests all came back negative. 

My brother had a kidney transplant more than 13 years ago. After I began dialysis this year he has been working tirelessly talking to politicians, clergy and other local leaders to get the word out on the importance of becoming an organ donor. 

Many countries have "opt-out" policies where citizens are automatically organ donors and those who wish not to have to sign forms to opt-out. He has been on a mission to have this system incorporated in the U.S. but has been met with little support.

Many people are falsely under the impression that their religion forbids organ donation, the state will control their bodies, or an emergency room doctor will declare them prematurely dead in order to use their organs for a friend or family member. 

There's a shortage of organ donors and one donor can save up to eight lives. The need to educate and correct misinformation is vital to increasing the number of donors.

What I've found most therapeutic is the ability to laugh about my experiences. On long days of dialysis, my brother never fails to lift my spirits; although our dark conversations are not for everyone. 

I'll tell him that on the positive side if I'm diagnosed with a more devastating disease, it gives me comfort in knowing that I can stop going to dialysis. And he'll tell me that if the doctors ever say he's contracted an incurable disease and only has a few months to live, he'll travel all around the world. 

Then I'll say, "What if the doctors are wrong and after spending all of your money you find out that you have years to live?"

Of course my brother is saddened by this possibility and tells me that I have ruined his pipe dream.

Meanwhile, the 87-year-old patient to my left and 95-year-old patient to my right just look at us like we're crazy.

In addition to cheering me up, when my brother noticed that another patient was waiting a long time for a ride home, he personally drove him home several times.

This patient spoke little English, so my brother later followed up with our doctor who changed his dialysis schedule to accommodate his transportation needs. Our doctor is always thrilled to see my brother and treats him like family.

Remarkably, my brother still remains humble though he is treated like a rock star at the dialysis center, as well as our mom's nursing home.

I guess things haven't changed that much since I was a little girl and every night at bedtime I would yell downstairs to my parents, "Sorry for being so bad," and my brother would add, "And I too would like to apologize for being so good."



20 comments:

  1. I hope you are successful in getting a kidney transplant soon. Your brother sounds like a sweetheart and how nice to have a family member who knows exactly what you are going through.

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  2. So very sorry about your health challenges. My husband was a professional patient his whole life and we went through many health challenges. Glad you are doing all you can to get a kidney transplant. I hope it works our for you soon.

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  3. You and your brother are both amazing. I am praying you get that transplant sooner rather than later.

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  4. What a powerful blog post! The solidarity of kin, the best show of FAMILY I've ever seen written.

    I related because I have a dear friend awaiting lung transplant. I may pass along the idea of going through another state's system.

    I pray for your resolved health

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  5. I had no idea states had different lists, and wait-times. I'm so glad you found out about this.

    I'd certainly support opt-out. I wish we had it.

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    1. Jacqui - I’m grateful that my son started,researching hospitals in,other states. Then my husband joined in and the dialysis center also provided feedback.:It really helps having a good support system and I’ve been very fortunate: i also have a few close friends who’ve ‘been frequent visitors which make the treatments go by much faster. I’m glad you support opt-out and hope my brother’s hard work pays off. In the meantime, people can sign up to become organ donors at the DMV. Thank you Jacqui!

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  6. Debra - I’m very lucky that my brother has been so supportive. Thanks for,your encouraging words and he’ll love that you called him a “sweetheart!”

    Natalie - I can’t even begin to imagine what you went through with your husband and I’m sorry that he died so young. He was lucky to have you. Thank you, Natalie.

    Alex - Thanks for hosting another wonderful IWSG and I really appreciate your well wishes!

    PJ - Thank you for the kind words. I hope your friend receives a lung transplant soon.


    Julie

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  7. *hugs* 5 to 7 years... Yikes. My 17 year old just decided to list himself as a donor, and I just hope nothing ever happens that requires he turn in that card. Regardless, I'm hopeful for you.

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  8. Crystal - I commend your son for becoming an organ donor! We all signed up years ago when my husband received a cornea transplant. Sounds like your son has a big heart like his mom and he’ll be fine. Thanks Crystal!

    Julie

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  9. I bet your brother was your hero even before your illness. The comfort of someone who has gone through the same thing is such a blessing.

    I have put you on my worry list(which was passed down from my Irish mom). Know that you have many that have gotten to know your funny disposition and warm heart and care about you. I signed up as a donor many years ago and don't understand why others don't. What could be better than to give the gift of life to another. I hope they find the right match for you soon, Julie.

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  10. Hi Julie - gosh I didn't realise you were going through this as well as having that delightful mother you have!?!? ... crumbs she makes me laugh - no doubt at your expense ... but that's life. You give us wonderful reads.

    I sincerely hope a donor becomes available asap and all goes well - just lovely to know your brother is so supportive as well as your hubby and sons. Having a recipient who has experienced an op ... must help you so much.

    I'm always interested that so much can be read through our teeth, as well as our eyes ... I really should try and find out more about life seen through teeth.

    Thanks for an informative and hopeful post ... I've been a card carrying provider for as long as I can remember ... but thinking about it - the card is still with my English bits here - could and should get it out.

    Take care and all the very best to you and the family - and your brother is wonderful helping the other patient ... makes sense and brings comfort to them ... cheers Hilary

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  11. I am so sorry to hear of your health problems. I hope you can get a transplant soon. Your brother sounds like a gem. I'm glad you have him to add some levity to your days. Sending up prayers and virtual hugs for you.

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  12. GEM JULIE ~
    Your Brother sounds like a good guy... and a character. I think that's a great combination!!

    You always keep such a good attitude, Julie. You're an inspiration. I sincerely hope that kidney donor is found for you soon!

    ~ D-FensDogG
    STMcC Presents 'BATTLE OF THE BANDS'

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  13. Arleen - Though I really don’t want you to lose sleep over me, I’m honored to have a spot reserved on your “worry list.” I really appreciate your kind words and feel the same way about you. Regarding my older brother - although he picked on me when we were growing up, he was always the first to defend me against bullies. Thank you for being an organ donor, Arleen!

    Hilary - i’m not surprised that you’re also an organ donor based on all of the good things that you do! Yes, my mom still keeps us in stitches! It is amazing how much we learn from our eyes and teeth! I’ve been visiting my opthalmologist and dentist more frequently since I started dialysis. The treatments have caused my eyes and skin to become very dry. Thank you so much, Hilary!

    Julie

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  14. Connie - Thank you so much for sending good wishes my way! My brother will be thrilled that you said he’s a “gem!”

    Stephen - Yes, my brother is a winning combination of a “ good guy & a character!” Hey that sounds a lot like you! Thanks for saying I’m an inspiration. but it’s really admirable to see people in their 80s and 90s who continue to go for dialysis three days a week. Thanks for being so thoughtful, Stephen!

    Julie

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  15. It sounds like a very special sibling relationship, Julie!
    Hope you can get a transplant soon.
    Stay positive and take care!

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  16. Wow! I hope you get a transplant very soon. I'm amazed at your positive attitude and good humor about this in your post. Good luck!

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  17. Michelle - It's great to hear from you! Yes, we do have a very special sibling relationship. Thank you so much for the good thoughts, Michelle!

    Amy - I really appreciate your kind words. Thank you, Amy!


    Julie

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  18. Julie, I had no idea about your health issues. I hope the nearby state can bump you up quite a bit. And how great to have a "good" brother with a great sense of humour - although I don't ever remember you being "bad" when I knew you in hight school. And I am with your brother on the travel, I would also go around the world, and worry about the money if they cure me later.

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  19. I was so touched reading about your relationship with your brother. I am so glad you have each other and I also laughed at your dark humor.
    You certainly don't have anything to apologize for as far as blogging! With everything you are going through I'm amazed you are still writing posts. I am so glad to still have the chance to check in with you here and it always makes me smile to see a new post. I hope soon you will be able to share news of a transplant! Many hugs to you, Julie.

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