My sister over the summer had some severe reactions that looked alot like allergies. We never figured out exactly what was causing it, but upon returning to Japan, she was throwing up about 2-3 times a week and we were not sure why. She just came to Utah for Christmas, and she went to see the doctor. They found she had high amounts of protein in her urine, and she had very high blood pressure. She is 17 so of course this is unusual.
We just got off the phone with the specialist and he said that Rebecca's kidneys are functioning at 10% efficiency, she was just rushed to the hospital. Upon a deeper look the specialist says she was born with atypically small kidneys as is. There is a very good chance she will need a new kidney and they have yet to establish what is harming her kidneys in the first place.
This is very difficult for me as Rebecca is somebody I love very much. If I could only keep 10 people on the earth she would make the list, no questions. Part of me wishes I could just run down to the hospital and give her one of my kidneys. I hope to God that I am an eligible donor if it comes down to that.
In a few minutes I will probably go to the hospital to submit to a blood test.
I guess part of my reason for posting this here is that *I* myself could use some well wishing, but of course I will convey those same wishes to Rebecca when I see her.
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I will pray for you, your sister, and your family. In fact, *prays right now*
And we've considered naming a future child Rebecca. Every Rebecca I've ever known personally has been very nice. Posts: 21182 | Registered: Sep 2004
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Watching someone you love go through something like this can be worse than if it happens to you. You will be in my prayers.
Posts: 12591 | Registered: Jan 2000
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BB -- you have my prayers for you, your sister, and your family. And lots of virtual hugs. (((BlackBlade)))
Posts: 5609 | Registered: Jan 2003
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Well we tried to make it down to the hospital tonight but a snow storm blew in and traffic was congested all the way. After about 1 hour of driving we were not even half way to the hospital and my mom called to inform us that they can't do any blood tests tonight, so we have to drive up again tomorrow morning. My sister will certainly need a new kidney, of that there is no doubt, the only thing they have yet to firmly establish is the cause of her condition, and if any of us are acceptable donors.
My older sister who lives in Layton is still going to make it to the hospital and has supplies for my Rebecca and mom as mom is spending the night at the hospital.
Rabbit: I completely agree about it being worse then it happening to me. The hardest part of all of this for me is to trying to decide to be somber about all this or try to keep a sense of humor. It's so hard to find the right balance.
My father is taking this very hard, and I can tell. My mom on the other hand is sorta in a, "Get a grip people, Rebecca is going to be fine, stop freaking out" state of mind.
-----
Thanks so much for the support so far guys, I'll post updates after I go to the hospital tomorrow morning.
Posts: 14316 | Registered: Jul 2005
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That sounds very scary, so I can understand you being upset. The good news is that the doctors are on top of the situation, I hope they find out what is causing her symptoms soon.
You will definitely be in the Ward household thoughts and prayers. Keep us updated!
Posts: 14428 | Registered: Aug 2001
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Best wishes and thoughts for you and your family, BB, especially your sister. There are ways to get by temporarily without a kidney transplant (different kinds of dialysis), and though they aren't what you'd call fun, she can keep going.
I've double-checked my driver's license re: organ donation, as this reminded me. I know most kidneys are live donation, but just in case [probably not for your sister, but someone, somewhen, hopefully].
Her situation is what I worry about as a possible result of untreated or improperly treated UTIs in little kids -- I've seen too many kids come back in kidney failure after a high blood pressure wasn't checked up on, or a UTI in a kid wasn't given the full workup. Regardless, whatever the reason, I'm sure they will figure out exactly what they need to do to make it better for her.
I knew a tough old geezer in his 60s or 70s, still working as head of the VA, who'd had a kidney transplant for something like 20 years and was still going strong. Wonderful guy. It's amazing how much can be done, and how good life can continue being even with some scary diagnoses.
Posts: 14017 | Registered: May 2000
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I'm sorry to hear about this, Blackblade. I'll be thinking of your sister and the rest of your family, for what it's worth. Do let us know how things go at the hospital today.
Posts: 16059 | Registered: Aug 2000
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Well the doctor got to check her out today and apparently Rebecca is responding VERY positively to the medication they have her on. What this means so far.
1: It is likely Rebecca will be permitted to come home tomorrow from the hospital.
2: She will need to stay in Utah for a few weeks so they can keep an eye on her.
3: If she keeps doing well they will let her go back to Japan to graduate while they procure a donor kidney.
4: The earliest that they will be able to perform the operation will likely be June. In the meantime they will look for a suitable kidney, and give Rebecca treatment designed to prepare her body to accept a donor kidney. She will also take some mandatory classes so she knows exactly what having a donor kidney entails.
5: My little sister looks like she is going to be just fine.
6: I can still go to Washington over the holidays and see the inlaws as well as some Seattle hatrackers. I'll have to bump that thread.
----- I am wary of celebrating early, but I am glad she isn't in the ICU or anything like that. It appears so far that she just got too big for her small kidneys and they are exhausted.
Random interesting fact about kidneys: When you get a donor kidney they typically do NOT remove the faulty/dead kidneys, and instead attach the new kidney elsewhere. This is done primarily I believe to prevent surgical morbidities. A common place to attach the new kidney is the illiac fossa.
Posts: 14316 | Registered: Jul 2005
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Wonderful news! It's great she may be able to come home. I'm glad things are looking up. I know you still have some challenging times ahead, but it sounds like your sister is going to be a great candidate for a donor kidney and do just great with it. My best wishes and prayers will continue to be with you all.
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BB, I hope your sister continues to do well while awaiting her kidney replacement. Keep us posted.
Posts: 3149 | Registered: Jul 2005
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1: Rebecca cannot go back to Japan, she is just skirting the dialysis line too closely for her doctors to feel comfortable with her being a plane's ride away. She is going to finish her high schooling here in Utah, and live with our mom while our father and youngest sister stay in Japan and try to live normally. I feel very sad for Lexy (the youngest) she is an only child at home far sooner then she was anticipating, and she misses her mommy.
2: Just got back from the hospital and spent 7 hours doing tests, reading literature, and interviewing for kidney donation. Turns out that since I am Rebecca's brother and if we indeed share the same blood type, then its almost a shew in that I am a good donor. We will have the results from the blood test and tissue match by Tuesday, inside I feel I already know what the results will be, and I am reconciling my life for what lies ahead.
3: We won't be waiting til June as planned, if it all works out perfectly, we are looking at operating somewhere in the neighborhood of 1 month from now. I'll have to drive down to the hospital multiple times in order to submit for testing, as they check me for just about everything before taking a kidney out. For me this will be tough as it is right in the middle of the semester, in fact the operation skirts awful close to finals. They expect that I won't be able to leave the house after the operation for at least 3 weeks, maybe 4. After that I could probably return to school and work as long as I take it easy. The average out patient donor is out of commission for 6 weeks. I expect that this will almost certainly insure that I do not pass math this semester which means one more semester to get through before I can graduate.
4: Apparently I weigh 14 lbs more then I had supposed It's looking like it won't kill me to start an exercise routine and keep it the rest of my life, as obese early onset diabetes is nothing to mess with when you've only got one kidney. Perhaps I will get something back for giving up a kidney in addition to keeping my beautiful sister around.
5: Thank God the insurance policy I took out on myself 2 weeks ago went into effect yesterday, now if they find something horribly wrong with me from the tests they will be running I am covered.
I'll post on the tissue/blood tests when I know about them, I might not wait for the hospital to call and will instead ask them to look them up for me over the phone. Again thanks to all of you for your support, it has and continues to mean a lot to me and especially Rebecca.
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Thank god. I think you should start rigorous excersize at least every other day. You're going to need to be in the best of shape to get back from them cutting a slab out of you.
And you want the organ to be as healthy as possible for its new owner.
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I didn't hear about this until now, BB. I wish your sister & you all the best, and have you in my thoughts.
Posts: 2409 | Registered: Sep 2003
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BB, this is tough. I'm so sorry to hear about this ordeal. I'll second what everyone else has said: you're in my thoughts and prayers. I hope with all my heart that things will work out for you and your family.
During my anesthesia training I got to participate in a few kidney transplants, a couple of them from living donors. It sounds to me like you are already very well informed of what this operation may entail for you. For what it's worth, if the nephrectomy (donor kidney removal) can be done laparascopically, the recovery time, pain and length of hospitalization can be much better than with the old approach.
Which hospital is Rebecca being taken care of? I'm guessing either LDS or U of U. If it is LDS, the transplant surgeons there are excellent (again, in the for what it's worth department).
Good luck and keep us posted!
Posts: 155 | Registered: Jul 2006
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BlackBlade, your commitment and dedication to your family is amazing. a true hero. THank you for the updates and I'll be keeping you in my prayers.
Posts: 813 | Registered: Nov 1999
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quote:Which hospital is Rebecca being taken care of? I'm guessing either LDS or U of U.
She is being taken care of at U of U. They seem like a very sharp bunch over there, my family feels comfortable with how they are handling my sister. There was a baby in need of a kidney transplant in the room with us while the doctor debriefed us, it suddenly made me think that our family's problems are relatively insignificant.
Does anybody have any experience keeping a bag of urine with you for two seperate 24 hour periods while keeping it refrigerated at all times? I'm probably going to do the first bag this weekend, but the second will have to be on a weekday.
I don't feel like much of a hero, more along the lines of, "This is what must be done, and you are going to do it, there isn't any other way."
Posts: 14316 | Registered: Jul 2005
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Damn, man. I keep reading this and trying to think of something encouraging to say.
I'm just glad you seem to be taking it looking forward, with a cheeky "g'head, we're ready for ya" grin. Good luck to you'n'yours.
Posts: 4313 | Registered: Sep 2004
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Lots of new developments some good, some not so good.
Turns out my mom was wrong about what blood type I am and the test results came back A+ instead of the expected O+. So I cannot donate my kidney to Rebecca. Interesting side note, there is a special kind of A+ called I believe A2+ that can still donate kidneys to O+ folks. I was simultaneously relieved and crushed. Relieved because that is so much less that I have to work out with work and school, crushed because I wanted to be able to help my sister. My family felt like we were back at ground zero.
We've started looking at extended family, and my older sister's husband is O+. Although it was a slim chance that he would be a tissue match he got tested. After testing, his tissue is indeed not a match, but Rebecca's immune system doesn't seem to attack his cells so he is still a go at this point.
Rebecca has been getting steadily worse, but she has tried very hard to keep a positive attitude about it all. She was scheduled to meet with her doctor to consider dialysis two days ago, and while at the hospital she had a seizure. She ended up having three seizures that day and so the staff rushed her to the ICU to try and stabilize her. Her blood pressure is just far too high, and she needs dialysis; they ended up doing the procedure yesterday. Thank God she was at the hospital when she had her seizure, I'd hate to think how my mom would have reacted if it had happened at home.
It's hard to tell how Rebecca is responding to all the drugs she is on, as well as the anesthesia. She is a little responsive right now, but mostly just opens her eyes and then closes them again. My younger brother and grandfather are both heading down to the hospital now to give her a blessing. I must admit I'm a little put off that I was kept out of the loop about all this until just now, apparently my mother had the strange idea that she need not call me all last night and that this morning I had work, (on a Saturday?!)
I'm almost done being mad about all this, but it's hard for me to decide whether to drive down to the hospital right now, or leave in a few hours. On the one hand I want desperately to be there for my sister, on the other, she isn't even awake right now, and may not come to properly for hours. I don't know if there is much point going down there now that my brother is giving the blessing, and just watching her sleep. Even if she wakes up she might not really be there and I'd be so frustrated being there and not being able to help the situation.
So I'm stymied right now, I'll probably end up going to the hospital sometime today, once she wakes up.
Posts: 14316 | Registered: Jul 2005
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Black Blade, I'm sorry she's taken a turn for the worse and that your hopes for being a donor did not work out. I sure hope a match is found for her soon.
When you do see her, let her know a bunch of people she doesn't know are pulling for her!
Posts: 3149 | Registered: Jul 2005
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I'm so sorry that you being a donor didn't work out. And at least she was at the hospital when she had her seizure - even if your mom had gotten her right to the hospital, they might have been delayed in the ER or something. She got the promptest possible care, and that's really good.
I don't know what to say, but I'm praying for you and your family and especially Rebecca. I know people respond to the ICU differently, but when my mom was in, I wanted to spend as much time as I could with her, even when she was sedated. It's kind of a scary place, because of all the tubes/IVs, but just remember they won't be there forever.
Many prayers and good thoughts.
Posts: 2849 | Registered: Feb 2002
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Well the bad news is that two more potential donors can't donate kidneys for various reasons. One had an abnormally small kidney, and the other had an abscess on one and so it's unsafe to take one.
Rebecca had more seizures this morning and was just rushed to the hospital again. My mom says that she can't seem to keep her medicine down as she keeps throwing up when she eats. Her blood pressure keeps sky rocketing and hence the seizures.
We have another candidate who has commenced testing, and it will be about two more weeks before we'll know if she is a match.
So that's where we stand, I am not sure if Rebecca will be admitted to the ICU again, I'll say more when I know more.
Can't say I'm not disappointed that finding a donor has turned out to be so difficult.
Posts: 14316 | Registered: Jul 2005
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Oh no. I'm so sorry that things have worked out the way they have so far. But, I'm still hopeful that all will go well for your sister and the rest of your family.
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Wow, I did not see this before. My mother now only has 7% kidney function as of December and has been on dialysis since then. I, too, can't donate my kidney because I am A+ and she is O+, but she is not even allowed to get on the kidney donation list until she has had no heart problems for six months, we are at one month and counting right now. My mom has been living in a nursing home for the past month, because she has been unable to care for herself. I know this may seem old to some, but she is only 55, she should have more time left, and right now it seems as if everything is failing. She has congestive heart failure and end stage renal failure.
I can't know exactly what you are feeling, but I want you to know that I am in somewhere near the same place. I will add your sister to my prayers.
Posts: 188 | Registered: Aug 2003
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It's looking like it won't kill me to start an exercise routine and keep it the rest of my life, as obese early onset diabetes is nothing to mess with when you've only got one kidney. Perhaps I will get something back for giving up a kidney in addition to keeping my beautiful sister around. 
