My brother and I have been called in to see the neph.....

[paris]

I understand the concerns, Richard.  All my kids were tested and a couple of friends.  I was never sure I could actually accept theirs. They are all young, have children(except AlohaBeth!!)  and I felt like I would be putting them in jeopardy. My oldest daughter said it wasn't my decision, it was theirs.  I was almost relieved when no one matched.    It has been easier with a cadaver kidney.  Although I think of the donor and family every single day, it is still kind of abstract. 

That being said, you know I love you so much and I want you to have that kidney.  I want you to take any one that comes your way, is offered to you and matches.         You know your brother and how he would react if the kidney were rejected.   I think we can be logical and know all the risks --- but the emotional side is very real.  It all comes down to if it feels right to you.   You are one of the wisest men I know. I respect your opinion and know you will do what is right for you.    Love ,     

[cariad]

Thanks Cariad. if you weren't married I'd love you you're always so nice and thoughtful

Ah, sweet Richard! You've made my day. (*grumble grumble*.... stupid marriage always keeping me from doing fun stuff .... *grumble*)

I was so touched by this, and when I read it to Gwyn he said "He can still love you, just don't get caught!" (Look, I'm just passing along what I heard. I'm as shocked as any of you!)

That's lovely of you to consider what your brother's going through, and it does indeed sound like a rough patch where he truly does not need someone else's troubles heaped upon him. I'll tell you a little secret about myself. Everyone else stop reading!!! (Ha Ha. Just kidding.... Did they fall for it?)

  I went through a point in time much like what your brother seems to be in right now. I had moved out of a city that I loved for a city that I detested (because that was where Gwyn was employed) and I was too depressed to socialise often or look for a job or do much of anything. On top of that, I believe I was having a very dangerous psychological reaction to the anti-malarial Lariam after coming back from Africa, an evil drug that has led to both suicides and homocides.

Anyhow! I needed an accomplishment to focus on, something where someone would say "We really needed you at that moment, and you came through - thank you!". I know that this is not an appropriate reason to become a donor, but what a boost to his self-esteem this will be if you both go through with it. A job pulled me out of my dark days, and it could well be that this pulls your brother out of his. I certainly notice a change in Gwyn - extra confidence along with a huge weight lifted off of him. He did it, he survived, and he's recovered! Maybe just maybe this will help your brother, too.

I was in tears at dialysis over the thought of my husband donating. I really do hate dialysis - hated dialysis - and the thought of my husband of all people in the world ending up where I was because he tried to help me completely overwhelmed and consumed me at that time. It is fear driving preemptive guilt, and it's normal. I cannot even access those emotions any longer, though. Gwyn is fine and I do not worry about it anymore. We will enjoy what we have until it ends, and if it ends, we will handle it.

Get the transplant and come to America! Bring your brother! Two single lads with Australian accents and a story to tell? *swoon* You'll need private security to keep the sheilas off!

[boswife]

i have nothing to add as far as 'pros' or 'cons', I just wanted to tell you how wonderful it is to read of your possible transplant. I couldnt be happier for you and I wish you all the happiness the world has to offer..  I will be surely following your progress :-)     AND.........is this not the coolest place ever this IHD board.  I mean, just look at the fun, concerns, and love shared here.   We have all been blessed to have found it... 

[kellyt]

    I'm confused.  We all praise living donors.    "We love living donors!"   Remember?

But, again, I understand your feelings and concerns.   

[RichardMEL]

Dear Cariad, thank you for your thoughts and sharing. That is a very good point that I had not considered - the self esteem boost it would give him by doing something positive like that is priceless - that's really a very valid point. It's funny I don't worry that he'd end up on Dialysi himself, though I think maybe that is something I should worry about  Just more a general concern that something bad might happen should he donate - and then of course there is the emotional issue of donating that ends in failure (and at some point, it would, but obviously I'm talking about an instant rejection, or 3 months or something).

It's interesting to read Paris's comment from her daughter that "it's not your decision, it's ours" - and that reflects the point that for my brother it is his choice to want to donate to me, and I need to understand that it is his decision to take that risk and I should just shut up and accept it with good grace.

I need to so I can come take Cariad out to dinner... no, we won't get caught.... no, really.. we won't.... 

Thanks everyone for your thoughts, concerns and comments. It's appreciated very much!!!

[paris]

I was once told that if I didn't let people help me, I have deprived them of their joy in giving.  I never looked at it that way before.  I just have a hard time accepting help or gifts.  But this one statement made me realize I needed to learn how to graciously accept help and just say thank you.   A kidney is probably the biggest gift one could give.  Let your brother give you this gift he has for you.  And just say thank you.   


I talk really big, don't I?      I am great at giving advice, but have a hard time following it!   I just want you to get that kidney.   

Moosemom, about the drinking issue.  For me, since you have to record every ounce in and ounce out, looking at the log all day long can be a little overwhelming. Half way through the day, you see how much more you need to drink and wonder how you will drink it all. My intake is suppose to be between 75-100 ounces. I haven't downed that much fluid in a long time. Then you stress if the output is no where near as much as intake, because you could be holding fluid.  I know it will get easier, but it is a part time job getting all those fluids in.   I keep reminding myself that I am helping the kidney by drinking.  It is just a whole new way of thinking about fluids!!   

[Riki]

I don't ever remember being told that I needed to drink after transplant, but then, I was never fluid restricted either.  I'm not fluid restricted now, not officially anyway.  I just watch my intake, because I have no output until I'm at dialysis

[kellyt]

I don't ever remember being told that I needed to drink after transplant, but then, I was never fluid restricted either.  I'm not fluid restricted now, not officially anyway.  I just watch my intake, because I have no output until I'm at dialysis

Same here.  I asked my doctor how much I should drink after transplant and he said "Drink when you are thirsty" and "Don't allow yourself to get dehydrated".  That's it.  I was never told to drink, drink, drink.  I was never on fluid restrictions either and I have always been use to having a drink near by, so I was never worried about getting dehydrated.  I don't think I've ever been dehydrated in my life.  lol

Now, when I had that silly drain in my new kidney I drank one bottle of water after the next so that I was always sure the kidney was ok.  I hated having that thing in my kidney.

[lola]

Richard you silly man you asking to be slapped around!!!!LOL we all know you'd enjoy that faaaaaarrrrrr to much . I am now that we are in October all the things the psychic told you start to come true...xoxoxoxo    oh and FYI 1 of Otto's brothers had a ABO transplant 7 years ago and is doing GREAT

[Riki]

I wish I knew more about these types of transplants, because my mom is willing to donate, although I don't think she's healthy enough to do so, but she'd have the option.  The rest of my family doesn't seem to give a shit.  Mom would do whatever she had to if she thought she'd be able to give me a kidney

[Sunny]

Richard, I can tell you have a very loving and caring brother. He sounds like he truly wants to do this for you despite any issues he might come across while going through the approval process. You are so fortunate and extremely worthy of his efforts. I hope all goes well.

[paris]

Since my kidney is taking it's own time to wake up, my fluid intake is important.  It actually is helping get  "Sean" working and doing it's thing.  But my team has told me over and over not to get dehydrated and chance rejection.    As I said on another post, each center seems to have their own set of rules.    I just do what they tell me!!         If they tell me to stand on my head to make my kidney work better, watch me stnd on my head!!!             

Richard, I forgot about the October prediction!!  Maybe it will be on Tamara's wedding day!         Tell your brother we all love him (almost as much as we love you!) and appreciate what he wants to do for you.   

[RichardMEL]

with the fluid intake issue post transplant I'm aware how important that is. 100 ounces = 3L approx, and that's a lot, but then again I used to drink 2-3L of water prior to D. I've already planned to keep at least a 2L bottle of water in my fridge and drink from that daily and ensure it is empty before I go to sleep - that's before anything else I drink during the day like tea, coffee, soft drinks etc. Obviously I'm not transplanted yet so I don't know what my requirement will be, but I know I will do whatever is required to keep that gift going to the best of my ability. As I see it it's just another application of willpower. Right now I use my will to limit what I drink... hopefully I will be using it to drink more (and right now, I just cant' wait for that to be my "problem")... though I am also aware that with these restrictions I've had for the past 4+ years my bladder has shrunk and it won't be used to large volumes going through it, so I may have to pace how I drink those litres.. but I am pretty confident that won't be a problem for me. I can drink one of those 600ml bottles of water or iced coffee or whatever pretty quick, all  I need is five of those in a day and I'm at 3L. I could do that in 5 hours let alone 24!

As for the psychic prediction and Tamara's wedding - remember the psychic predicted it would be BETWEEN october and march, and let's face it, a live donation won't happen in the next two weeks!!  Indeed I can't see it going ahead before the new year. There is still an independant evaluation of my brother to take place, and who knows how long THAT will take, or even when it will start. This process has been going on since June last year, so they're hardly going to speed up now. As I've always said I have the definite feeling that they are dragging their heels a bit on this process because they're hoping the cal will come through in the meantime. I have no proof of this, but it's just a feeling I have. I am not certain why that would be, other than my neph, as senior and respected as he is, does not seem to be too trusting of ABO transplants, but again that's just an opinion not based in fact.

So anyway, still some time to go I think.

[cariad]

Richard you silly man you asking to be slapped around!!!!

I'm worth the risk! 

Seriously, Richard, it sounds like your nephrologist is a bit wary of ABO incompatibles and secretly wants that call to come through. It sounds like he recognizes what an informed patient you are - how much effort you put into your health - and is willing to take an extra risk with you if that is the way you choose to go.

I was never on fluid restrictions (well, not since I was a little kid) so I put my inability to drink after transplant down to just feeling like death warmed up for at least 2 months post-transplant. I did not keep a log of my fluid intake, and my little post-transplant guide said that it was only a major concern for the first six weeks. I had to be put back on saline a few times for low blood pressure which my surgeon said was due to inadequate fluid intake and the chemo devastated my veins, so IVs and blood draws were gigantic sources of stress for me. At one point, the nurse had stuck me 3 times and was down to the very last usable vein (which she thankfully hit successfully). So, like Paris said, drinking felt like a chore and the immediate consequences of failure were terrifying to me, never mind the possible damage to the kidney. I think I was told to drink a minimum of 60 oz per day, but after all that stress, I strangely cannot remember the figure. (And it's only been 7 months!)

[Riki]

you have to be careful with drinking after transplant, though.. especially if the kidney starts up right away like both mine did.  I remember the first time I peed myself after the first transplant.  I was 14, so it was a bit embarrassing.  I hadn't really stopped peeing that time, but it had diminished a bit, but I don't think it was enough that I really noticed.  I was sitting on a commode that didn't have the pot attached, and I was watching tv.  I've no idea why I was sitting on the commode, but anyway.  One of the nurses came in and asked me why the floor was wet.  I didn't even realize that it was wet.  They figured that I had peed, and didn't even feel it.  I had to change my clothes, and they had to teach me how to hold it again.  It was mortifying at the time.  I had trouble right up until I was 16 or 17, wetting the bed.  It got to be that a toilet in a dream was something that told me I needed to wake up.  I still wake up sometimes if I dream of needing to go, even though I can't now.

[RichardMEL]

so many fun things to look forward to!!! 

[RichardMEL]

So my brother the vegetarian is upset that they want to use heparin during the op and wants to know if there's a vegetarian friendly alternative? Anyone know?

[Riki]

I didn't know heparin was an animal product...

I was on something for a while that was used instead of heparin, because we figured the high amounts of heparin used was what was making my hair fall out.. I can't remember what it was called.. sodium something or other.. I think the heparin was still being used on the machine, but they used this stuff to lock my line..  Richard, send me an FB message before you go to bed tomorrow night, and I'll ask the nurses what it was called.. I have a mind like a sieve.. I'll never remember if someone doesn't remind me.. *L*

Nevermind..  had a brain fart and remembered what it was called...

Trisodium Citrate  http://ndt.oxfordjournals.org/content/16/7/1521.2.full

The article explains what I was using it for, so I don't know if it can be used instead of heparin in other applications.. I'm sure the drs would be able to tell you

[kellyt]

Since my kidney is taking it's own time to wake up, my fluid intake is important.  It actually is helping get  "Sean" working and doing it's thing.  But my team has told me over and over not to get dehydrated and chance rejection.    As I said on another post, each center seems to have their own set of rules.    I just do what they tell me!!         If they tell me to stand on my head to make my kidney work better, watch me stnd on my head!!!              

Richard, I forgot about the October prediction!!  Maybe it will be on Tamara's wedding day!         Tell your brother we all love him (almost as much as we love you!) and appreciate what he wants to do for you.   

I hear that!!   I told the doctor I'm seeing for my back that if the treatment is laying in a tub of green jello for six weeks then I'll do it.  lol  Same with my kidney.  Whatever it takes.  I'm surprised at the similar info we all get from our doctors, as well as the totally different info.  Most of all it's the same.  Plus, your little bean is sensitive right now.  And shy...

I want to see you PARIS!!!!!!     

[ChickenLittle56]

Yep Riki, heparin is made from pigs intestines. Back in 2008 Baxter had to recall millions of vials that had ingredients that was made in China. FYI

[paris]

I want to see you PARIS!!!!!!     

Me, too, Kelly.  I get teary just thinking about how much I want to see you and Karol.  We can't let 2011 go by without meeting somewhere!


Hmmmmm, pigs intestines?!  I think I could have gone forever without knowing that        

[RichardMEL]

Apparently Clexane is a viable alternative however I note on wikipedia (for what it's worth):

Decreased dose is recommended in renal failure or ESRD patients. For DVT prophylaxis in a patient with GFR < 30, a dose of 30 mg daily is recommended. For DVT prophylaxis in a patient with GFR > 30, full dose (40 mg daily) can be given. For treatment of DVT/PE, the standard recommended dose is 1.5 mg/kg once daily. If the GFR < 30, the dose should be changed to 1 mg/kg daily.

http://en.wikipedia.org/wiki/Enoxaparin_sodium

Anyway my brother seems happy enough if this stuff can be used. Of course the doctors may say no....

[okarol]

I found this:
"Vegan? Sorry, We Have Porcine Heparin on the Menu!" http://www.anesthesia-analgesia.org/content/102/3/976.1.full

[cariad]

So my brother the vegetarian is upset that they want to use heparin during the op and wants to know if there's a vegetarian friendly alternative? Anyone know?

I wish I had known about this before the transplant, although I did not even know I would need Heparin after the transplant (and that it would have to be an abdominal injection - ow, ow, ow!) Some pregnant women need to inject these every day, twice a day for 8 months or so - I cannot imagine!

Anyway, as I've said many times before, we long standing vegetarians can get really sick if we ingest animal products, but I don't know if that applies to injected substances or not. I was really sick after transplant, but good luck tracing that back to one particular part of my treatment. So many potential culprits there.

Well, what's done is done so I am not going to dwell on it. I accepted ages ago that I am going to accidentally be exposed to un-vegetarian products once in a while. I can see why your brother, though, should receive special accommodations so long as it will not interfere with his health. If they had said I needed to eat a porkchop before my transplant before they would perform it I'm sure I would have found a way, but donors should not have to compromise. I hope they can offer a solution for him.

[RichardMEL]

Well it will be interesting to see that IF the surgery is approved what they will offer for him and how that works.

Just on the vegetarians eating meat after a long time - I just watched the latest episode of The Amazing Race wherein to fast track to the pit stop(ie: avoid all the challenges in that leg of the race) this team of doctors(ironically) had to eat a cooked sheeps head(or something like that) in Norway. One of them had been vegetarian for over 20 years.. I can't believe she sucked it up and ate the meat - all for that shot of a share of $1 mil.

See my brother would NOT do that. I would have said nope, I'll forgo this.

Well everyone's different I guess.