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Update on Sister

Saturday, August 18, 2018

Dear Friends,

Just wanted to write to follow up on some stories I shared earlier this year. Thank you to all who've asked me to write again. It means a lot to me that you are interested in my story and willing to listen. This letter is for those of you who have asked about my sister's transplant situation. It might be boring for others, so please don't feel the need to read it all the way through or respond. I'll write about other things next time, so tune in then--hopefully soon, same channel.

When I visited Meredith in Florida in late January, it seemed that all systems were GO for the kidney transplant she needed, and the surgery seemed imminent. I even thought maybe I should extend my stay in Florida to be there for the big day, as it seemed so likely to take place in the next two or three weeks. The donor and Meredith were a match, and they had both undergone physical and psychological tests to ensure that the surgery would go well. The only thing that stood in the way was a troubling number from a test related to the donor's thyroid.

And I'm assuming that the thyroid number might be what stopped the surgery from taking place, for every time I have tried to inquire about the transplant, Meredith does not address my question head-on but gives some vague reply and changes the topic. "My numbers are good for now," she says, and this means that she does not yet have to start the dialysis that our mother had to endure for years before she died of kidney failure at age 71. Or, it could be that the donor, Krystal, the produce manager Meredith befriended at the supermarket (Meredith has never met a stranger) had second thoughts, or Krystal's husband persuaded her that it wasn't a good idea to donate a kidney to someone she barely knew, or Krystal's teenage children implored her not to go through with it. To tell the truth, even though I was moved by Krystal's willingness to perform such a selfless act--proof of her sincerity was the extensive testing she underwent, much of which required trips to hospitals an hour away in Tampa, and how close she and my sister came to the actual procedure--I never could fathom that level of generosity to a stranger or casual acquaintance.

I've carried out a few selfless acts in my life, but I would never be able to go so far as to do what Krystal had been prepared to do--to have myself cut open so that I could give part of my body to someone with whom I had such a tenuous connection. I admire the people who can, but honestly I'm not one of them. Heck, I couldn't even bring myself to OFFER to do it for Meredith, even after her original donor, her son Perrin, was injured in a car accident on the way to the airport last Christmas, tragically becoming a paraplegic and therefore ineligible to fulfill his desire to be Meredith's donor. It's hard to write this, because I wish I were perfect, but even if I were found to be a solid match (Meredith and I are fraternal twins), I know that the only people for whom I could ever agree to be a living donor would be my children. And as for being a recipient, I would rather suffer pain and inconvenience than to receive the gift of an organ from a living donor. (A deceased donor presents less difficult philosophical issues, in my opinion.) I don't think my reluctance to participate in organ donation or reception means I think less of myself than my sister does of herself. It's not a question of deserving something very valuable (an organ) or not. It's just that some of us can accept things that others cannot, and some of us can do things that others cannot. My mother, for example, who died of the same kidney disease passed down to Meredith, did not want a transplant, and outright refused when I once mentioned (in my much younger, single days) that I might be willing to donate one of my kidneys to her. Like my mother, I know that I, too, would be unable to accept an organ from a living donor, family or not. When I imagine doing so, it's plain that my temperament would burden me with a feeling of huge debt to the donor and impending guilt and worry if that person's health deteriorated as a result of my need and his or her generosity. This is a decision that each person must make on his or her own, and I would never judge anyone for refusing, accepting, or changing his or her mind after making such a momentous decision.

But here I am getting into philosophical depths when all I really intended to do was to let you know that things seem to have fallen through with the transplant. Since Meredith avoids my questions, I am assuming either that this is an awfully painful subject for her, or that she regrets sharing so much information up to now and is being more guarded about things going forward, so as not to get everyone's hopes up, including her own. When I speak with her on the phone, she is quite upbeat and cheerful. I will see her in Colorado in October, for the wedding of my brother's son, and there I will find out more, I hope. For now, she remains well enough not to have to go on dialysis, and that is a happy circumstance which I hope will last longer than it did for my mother, who spent too many years hooked up to a machine.

That's the way things stand with the kidney transplant. I wanted to update on other things as well, like in-laws and my own doings (I was so down a couple of months ago but feel much better now), but I'm scared of losing this blog as I often do when I try to edit and strike the wrong key. Everybody stay well, and thank you so much for being here. Your presence touches my heart and brings me hope.

Love, Carolyn

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Member Comments About This Blog Post
    Well I know why I missed this blog. You posted it on my birthday, I had a house full of company, all of July and half of August was devoted to my friends and my 70 birthdays.
    I am sorry the transplant fell through, but glad to hear your sister is upbeat. I'll play catch up reading your blogs. I love to read your blogs you are detailed, and look at things differently than some of us. I love seeing how your mind works.
    Take care....going to read another one or two.
    Hugs emoticon emoticon
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    462 days ago
    Cont’d Of this while we live, your nephew and your sister. I also lost my Mother at 71. Cancer’s separate and second round. My Father is also enduring a separate and second round of cancer. I also flew home to see him this year. 6 Times! Lifted my ❤️
    653 days ago
    Oh Carolyn I’m so glad I’m back to catch up once more on your life. My sister is a dialysis nurse, so I understand the complexities of your sisters situation. It certainly is hard, and harder from a distance to live knowing the sufferings of those
    653 days ago
    I am so happy to hear that your sister's numbers are good! emoticon

    And I can see how hard it must be to decipher what your sister's silence may mean. Perhaps she isn't sure yet? Maybe the new friend needs to work on building up her thyroid health, little by little, and then it can happen after that. I don't know how long that takes. Maybe she wants to be quiet about it for now, like some people don't want to announce a new baby on its way until they've passed the first three months. I hope, though, that everything is the same, except for the waiting on better thyroid tests.

    emoticon so much for updating us on your sister's condition! emoticon

    emoticon that it would be difficult to accept help from a living donor. However, I've never been in that position either. I think if I had kids, I might be more receptive to the idea. So that I can live with my children longer. But using one of their kidneys could shortchange them out of a long, and fruitful life. I can see why your mother refused to use yours. She wanted you to have the very best in life, and the best chance of longevity. It must have been so hard for her to be on dialysis so long.
    669 days ago
    This is such a well thought out blog. I agree with you on all the points you made.

    Even if I was able to accept a living donation (I can't have any kidney transplant due to my other health issues), I just could not accept a kidney from a living person. As a person ages, kidneys commonly deteriorate, so that it is common for an elderly person to be functioning on the equivalent of one kidney. If that person had donated a kidney earlier in life, then the likely hood of them ending up on dialysis would be very high. I do know a woman with only one kidney (one was removed due to cancer years ago), and now that she is elderly, she is on 5 blood pressure medications, and her blood pressure is NOT controlled - she had a major stroke due to the uncontrolled BP. Her extreme BP level is due to the normal ageing of kidneys, and being she only has one there is not enough function left, so her BP is out of control.

    Two years ago I almost was at dialysis level. Since then I have gradually gone more and more to a plant based diet, as that allows the kidney function to remain stable much longer. I also take baking soda twice a day. Kidneys normally produce their own version of baking soda in order to neutralise the acids in the body. When the kidneys are damaged they cannot do this, so the acid levels build up, and then the acid levels further damage the kidneys: round and round, each condition making the other worse. Taking baking soda lowers the acid level in the body, and thus there is less harm to the kidneys. I was reading that a high percentage of persons taking baking soda, and/or going fully on a plant based diet, often have their damaged kidneys progress at a age-related normal level, and possibly avoid dialysis. Sorry this is long... I hope your sister can avoid dialysis for a very long time.
    712 days ago
    Thanks for posting this blog, Carolyn! I would give you an organ, if you needed one. I know that it's easy for me to say, since you're on record as not being willing to accept one from someone like me (you know, alive), but if you changed your mind, I'm your gal. emoticon

    I'd do it for my siblings, or my husband, and of course, my baby, and I can think of several other friends I'd do it for, too. But that's probably because I tend to look second. I really don't think things through before I do them, and I guess when it's someone's life, they're probably going to yell, "No takebacks!" emoticon
    714 days ago
    Thanks for the update. I think you shared normal thoughts and I appreciate your honesty. I wouldn't give an organ for my siblings, as a living donor, though if I had passed away then sure they can have any organ. (How morbid of me to even bring that up?) I absolutely would be a living donor for my children because I would give my life for them so any risk is worth it, but easy for me to say when I am not in the situation. I might for my husband too because he is truly my best friend, but once again, it is easy for me to say since I am not dealing with that prospect. Anyone else, no. There are risks involved and what if you need that organ down the line? I am fortunate that I doubt I will ever face the kidney issue because nobody wants my kidneys- I have kidney stones. I am so glad to hear your sister is doing well whatever the situation is right now. It's hard when you don't get the full story. I wish her health.
    715 days ago
    Hi Carolyn my friend! Yes this is a subject that takes LOTS of contemplation. I have a totally different slant on it and wonder if organ transplants are playing God. The thought of what each person must go through is daunting and when things go awry I wonder if it isn't the universe reminding us that we are stepping into the abyss. Of course, I might have a totally different take if it were me that needed the organ, or my child. I don't think so but maybe.

    As usual, your thoughtful and completely honest approach to things going on in your world is so refreshing to me and I feel the mark of a TRUE writer. We don't always write about just happy stuff.

    I have always felt that I could be totally and truly honest here in Sparkland, it's helpful to find a kindred soul such as yourself. If we can't be REAL we aren't authentic. If we aren't authentic why bother?

    I read so many blogs that paint a completely different picture to the actual life behind them....you can sniff out the fakery.

    Hugs to you my dear friend...one day we will meet and talk for hours! emoticon
    715 days ago

    Comment edited on: 8/19/2018 9:14:06 AM
  • SEAGLASS1215
    Thank you for the update...sending you hugs, this has been one heck of a year for you! I never really thought about the whole transplant process in such depth - you've opened my eyes to some things I never would have considered.
    715 days ago
    Thanks for updating us, Carolyn. Deciding to give or receive an organ is a complex decision. As you said, if I were to receive a donation from a living donor, & to have it fail, would put a heavy guilt on me -
    Did I do something wrong? Does the donor &/or the family regret the waste of an organ? Intellectually, I believe in organ donation & transplants - but, if push comes to shove, errrr, I’m not sure I could have gone through either part of the surgery.

    BRW, how old is too old to be a donor? I’m 68 now, birthday at the end edge of November.
    716 days ago
    Carolyn - adding my gratitude that you took the time to update us and share a blog. I love hearing about what's going on with my spark buds. You and the others who commented so quickly when I posted are the folks I really enjoy and like to hear from, and about.

    What a difficult situation with your sister. It does sound very complicated, and the whole circumstances may make her feelings about things more difficult - that her son Perrin was injured so badly in an accident before being able to donate, that your mom had the same disease, etc. Lots of emotions surely tied up in this whole thing. It is tough when you are concerned about someone and they don't wish to share. My sister is similar in that she chooses not to share about her health status (brain tumor) unless I ask, and even then, I do so in a very general way ("how is your health). And, even then, I do so AFTER she asks after me, or my husband. This was a hard thing for me to learn. But I've had to realize that she has to live every day with the reality of her illness, not me and she chooses to deal with it this way. Perhaps your sister is the same.

    I'm sorry to hear you were down recently. Glad to hear you are doing better and hope that continues.

    PS my picture is a strategic post that I figured out - lying back you can't see how full my face is OR my double chin! Hee hee. hugs and love to you and your familyl and looking forward to hearing more when you are ready.
    716 days ago
  • DESIREE672
    I have been in a similar position. I offered my kidney to my husband early in the process, hoping he would refuse, or that if he didn’t, I wouldn’t be a match. I don’t know if my thoughts were obvious - I couldn’t fake any enthusiasm for exactly the same reasons as you. He refused for the same reasons you would refuse to accept a transplant for yourself (and maybe he sensed my lack of enthusiasm). I suppose this is probably not a very common outcome, but an additional reason he refused is he’s seen married couples where one was a donor and the donated kidney failed, and the donor’s remaining kidney failed too, so they both ended up on dialysis.
    I think you’re very brave to talk about this dilemma.

    716 days ago

    Comment edited on: 8/21/2018 2:26:32 AM
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    716 days ago
    First I want to say it's good to see a blog from you. I always really enjoy reading them.

    Organ donation is a big deal for the donor and the recipient and I understand why you feel the way you do about it. There are moral, emotional and very personal issues involved.

    Please keep us updated about your sister.

    Looking forward to seeing your next blog.


    716 days ago
    I am happy to see you on Spark again! Interesting situation with your sister. I'm pretty sure I would be like you and not be able to donate a part of my own body except to one of my children. Certainly I am not so generous to give that much of myself to someone I didn't know all that well. But it sounds like your sister is taking it in stride.

    716 days ago
    What a treat to see a blog from you! I’m still here Sparking but rarely take time to blog. How did life get so busy? Hope all is well with you my friend. Hugs, Rhonda
    716 days ago
    Dear Carolyn,
    Don't beat yourself up about the donation. I, too did not want to give my sister one of mine which I never knew if I was able to. She went through with the surgery a few years later and never came out of the hospital. The guilt lived with me for a very long time. There are just some of us that just can't do certain things in our lives.
    716 days ago
    So good to read this post BUTTONPOPPER! Sorry things fell through for your Sister but sometimes, I believe, there's a bigger, better plan coming.

    Look forward to your future blogs. They always paint such a picture and makes me think...what would I do?
    Thanks for challenging me on that front.

    Take care and prayers to you and yours...

    Carpe Diem

    716 days ago
    So good to see you back "sparking" my dear friend. I do hope that a donor will become a match to your sister soo so will never have to experience dialysis. You know what I went through for Ryan soI would veen talk about all that is involved. Organ donation is a big decision to make. It is truly a personal choice that should never be made under duress or guilt and only if one's health is optimal and emotional state is solid.

    Would love it if you could make it up my way in October or maybe we could meet half way some where. Wer will talk about that.

    So happy to see you here and wishing you all the best.
    Hugs Susan emoticon

    716 days ago
    That's kind of odd how she avoids discussing it. Hopefully when you see her in person it'll be easier to talk.

    On the blog disappearing, sometimes with long ones I write and edit them in Word or Notepad and then copy/paste them into the blog. There's nothing worse than having that thing disappear!
    716 days ago
    Oh Carolyn.....it’s so good to hear from you! You are managing through a stressful situation. I pray that you and your sister will be strong and she will remain ina healthy state. You so deserve to have peace in your life. You are one special person who is loved here on Spark People........happy to call you friend. Peace and Love. Gloria
    716 days ago
  • no profile photo CD22518161

    I always appreciate your introspection and total honesty. Do you struggle with being the "healthy twin"?
    I think I might.

    It's great that Meredith doesn't have to go on dialysis at this time.
    God knows what He's doing, even if it doesn't have the swift timing our own will would prefer.

    716 days ago
  • _BABE_
    It was good to hear how you are doing and my thoughts are with you and your sister.
    716 days ago
    It's good to hear from you again. I am sorry to hear this transplant fell through but am hopeful for another opportunity down the road.

    Take care of yourself and check in often.

    716 days ago
    Thank you for the update on the status of your sister's health. I pray her numbers will stay good for a long time to come. I totally understand about your way of thinking re: donation, and like you, I don't know, even if I was able to donate that I would be selfless enough to do that. I have, however, made arrangements to donate my body to science. (I'm going to get to university yet!!!)
    716 days ago
    Thank you for writing, Carolyn. I'm glad to hear that both you and Meredith are doing okay, regardless of circumstances. I understand your point of view completely. Hoping you have a wonderful family time in Colorado in a few months! emoticon emoticon emoticon Lynn
    716 days ago
  • PHOENIX1949
    Appreciate the update.
    716 days ago
    I am so happy to hear from you and that you are ok. I love your blogs, they are so insightful. Thanks for the update on your sister, I was wondering how she was too. Hope to hear from you soon. emoticon
    716 days ago

    Comment edited on: 8/18/2018 11:38:26 AM
    As you say, very individual and personal decisions. And you have clearly thought very deeply about them!

    All best to you and your family.
    716 days ago
    Wow. Lots of things going on in re: the transplant. All those feelings you're having, and I am sure your Sister and Krystal, are totally normal. It's hard no matter how you toss the dice. HUGS and prayers for your sister. AND you.
    716 days ago
    Thank you for the update.
    My beloved MIL ended up on dialysis for nearly ten years, until she aged off the transplant list, and passed away at 74. Her quality of life was pretty poor the last few years, for sure.
    I am glad to hear your sister is feeling well for now, anyway, and that you have returned to the light side of life. I missed your thoughtful and articulate blogs.
    716 days ago
    Carolyn, It is good to hear from you again......
    716 days ago
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