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

[Riki]

I did some research last night, and I understand the procedure well enough, but I couldn't find it they even did it in Canada.  From what I've read here, I'd say that Prince Edward Island and Nova Scotia are behind the times in a lot of ways

[Darthvadar]

Hang in there, Richard....

That kidney's coming soon.... I can just feel it... And I've predicted three so far!!!!!..... All three were transplanted within weeks of my getting 'that gut feeling'

Darth....

[Riki]

let me know when you get a gut feeling about me, will ya? *LOL*

[RichardMEL]

oooh Darth if you're on the money I'm so coming to Dublin to take you out for a special meal (oh and I'll find something juicy for the Dougal the wonder dog!)

Thanks for the good thoughts - definitely hoping it will happen soon.

As I type (July 25th) it's officially(?!) my 4th anniversary of dialysis. One of my former nurses actually stopped by yesterday to wish me happy anniversary (it co-incides with her birthday so that's how she remembers). How sweet was that?

Hoping I'm not still there for the 5th, that's for sure! I'd rather be in Dublin, PEI, Seattle, Hong Kong or Vegas!!! 

[Dianejt]

Hoping I'm not still there for the 5th, that's for sure! I'd rather be in Dublin, PEI, Seattle, Hong Kong or Vegas!!! 

Please come to Boston, I soooo want to meet you

[RichardMEL]

*blush* sounds like I need to construct a mega round the world trip to fit everyone in.

Trust me you don't want to meet me. I'm really not that interesting in real life!

[texasstyle]

I was always under the impression that if you had kidney stones that you would not be considerd for donating. How they changed the regulations? Thinking of you

[RichardMEL]

Well according to the neph it's not a "show stopper" and that the real concern is that if you have stones then you're more likely to create more. Because the stones can block the link between the kidney and the bladder(hence the pain) the issue is that with one kidney the donor could be at some risk should stones form and block that one link.. but even the neph said that look stones usually clear within a few hours at the most, so a blockage will be temporary and not cause any untoward effects, and it's not like you wouldn't get it seen to because the pain is so intense.. so he was sort of saying that while there would be a slightly elevated "risk" to the donor to wind up with one kidney and the chance to form more stones being slightly higher than the general population, they didn't consider it to be something that would preclude the donation of a kidney.

It kind of makes sense to me anyway.

[texasstyle]

I've never had a kidney stone but I've heard they are very painful. Ouch! lol. I admire how much (and others) put forth as vesting an interest in their health. There is so much you have to do I can only imagine thinking about it all the time consumes you. You know who hasn't taken any of his meds since last Friday until today. (I think binders though) Then we wondered why he was so wiped out today. Any whoo lol...I've learned a lot from you since I've come and consider it a pleasure to be your friend. Carolyn

[RichardMEL]

aww thanks TS hun. See I try to not let this stuff consume me day in and day out by concentrating on my work, my kitty, my horrible football team, and of course the lovely ladies in my life!!! These are all positive (well mostly positive!) things to keep my mind off dialysis, kidney disease, waiting for the transplant call and all that stuff. I honestly think I'd implode if I didn't have these other distractions.

[MooseMom]

I actually watched an Aussie rules football match a couple of Sundays ago; it was shown on one of our Public Broadcasting Stations.  One team was from Sydney and the other team was from somewhere else.  Anyway, as much as I love sports, I have to admit that I couldn't make heads or tails out of it!  I had absolutely no idea what was going on, but it was still great fun.

[RichardMEL]

Sydney suck!!!  Luckily my team, the Tigers, actually beat them a few weeks ago in a come from behind, and unexpected, win. It was great!

yes our game can take some getting used to - we handball the ball almost as much(if not more) than we kick it (but it's called "foot ball!") and mark (catch) the ball with our hands, but we have no padding, helmets etc, and it can be a very fast paced and exciting game. Glad you enjoyed it! 

[RichardMEL]

Well here's an update of sorts for anyone still following this saga 

My brother saw the liver specialist about his cysts and they seem to think it is OK and wouldn't be an issue in relation to transplant. They did some followup labs which they will check out in a month, but that seemed to be more routine than anything else.

So yeah that's good.

Until the other day when he saw a naturopath and they did some tests and pronounced him chronically dehydrated (yes, the irony is not lost on me). Supposedly so that his organs were in danger at whatever level he was at. He's also got very low potassium (Guess this happens when you're vegan who hates tomato !  ). He's never been much of a drinker, but he's definitely been TOLD that he is in bad shape.

He seems to think it's all over in terms of donating to me. I told him I didn't really care about that but it was more important that HE will be OK. So we're not quite sure where that is at  - he is having followup tests in a month apparently to see where he is at (so his situation can't be THAT serious?!) but yeah.

So he draink a "heap" of water over the weekend. When we asked him how much that was he exclaimed with such pride "2.5L" oh good grief!!

Yes, I do find it very funny - here I am desperate to drink 3+L a day, and there he is, NOT drinking! 

[cariad]

Well here's an update of sorts for anyone still following this saga 

My brother saw the liver specialist about his cysts and they seem to think it is OK and wouldn't be an issue in relation to transplant. They did some followup labs which they will check out in a month, but that seemed to be more routine than anything else.

So yeah that's good.

Until the other day when he saw a naturopath and they did some tests and pronounced him chronically dehydrated (yes, the irony is not lost on me). Supposedly so that his organs were in danger at whatever level he was at. He's also got very low potassium (Guess this happens when you're vegan who hates tomato !  ). He's never been much of a drinker, but he's definitely been TOLD that he is in bad shape.

He seems to think it's all over in terms of donating to me. I told him I didn't really care about that but it was more important that HE will be OK. So we're not quite sure where that is at  - he is having followup tests in a month apparently to see where he is at (so his situation can't be THAT serious?!) but yeah.

So he draink a "heap" of water over the weekend. When we asked him how much that was he exclaimed with such pride "2.5L" oh good grief!!

Yes, I do find it very funny - here I am desperate to drink 3+L a day, and there he is, NOT drinking! 

 

Richard, I swear you are the cutest thing. You find the humour in whatever comes your way.

I hate to even mention this but drinking was such a struggle for me after transplant. I used to dread having to start in the mornings and then doing all my little calculations all day (OK, so you're more than used to those) would have me in a panic by the end of the day when it would be clear that I had not even come close to my goal of a minimum of 60 oz per day - or maybe the goal was even more, don't remember. I tried to pick foods that had a high moisture content, but since I hated eating even more than drinking, this was precious little help. In a weird way, I was relieved to be put on saline those few times that I was - all I could think was "At least I don't have to force myself to drink for a little while". Of course, I got over that, and the food revulsion, and that aspect of recovery is smooth today. I hope that you get to experience that feeling of normalcy much earlier than I did.

Oh, and how can anyone not like tomato? Especially a vegan? What on earth does he eat??

Good luck however this turns out, Richard!

[RichardMEL]

awww cutest thing?
 
can you inform some of your single female friends about that? 

Yes, he's a vegan who hates tomato, mushrooms and peas. God knows what he eats. It's insanely hard to take him out to dinner.. I swear!!!! 

About the post-transplant drinking thing. A nurse told me a few years ago one of the big problems with getting folks to drink as much as they should post transplant is that the bladder tends to shrink over time due to lack of use(if you follow fluid restrictions that is ) and post transplant obviously you need to fill it up time and time again and it takes time for the bladder to expand again.

For myself I plan to have a 2L bottle of water in my fridge and drink from that. If I get to midnight and there is still water there I will drink it down. That's on top of regular drinks of course like soft drinks, tea, coffee etc. I figure that way I will ensure I get closer to 3L/day. Obviously if I find I need more then I will modify that. Given I could down a 600ml bottle in about 30 seconds, I somehow don't think that taking fluid in will actually be a problem, but I do have a method planned to hopefully ensure i do the right thing.

That is whenever I actually get a transplant.....

[kellyt]

I'm looking forward to hearing the update a month from now.  I hope it's good news!  And I LOVE your new profile photo, Richard!   

[MooseMom]

I hate to sound really thick, but why was drinking after a transplant so difficult, cariad?  What exactly was the problem?

[Sunny]

Love your new picture Richard.
You probably have to fight off all the nurses.
I'm holding out hope you get that transplant soon. I think your time is arriving.

[okarol]

I hate to sound really thick, but why was drinking after a transplant so difficult, cariad?  What exactly was the problem?

I know for many patients, who have trained themselves to limit their fluids while on dialysis, having to go from the bare minimum to guzzling gallons of water - it's a tough transition.

[RichardMEL]

Well finally I have a small update on this.

My brother saw the liver specialists, had to have some followup tests but was eventually declared OK to go, and he then went to see the neph, who has also cleared him to the next stage - which is to get a second opinion from another nephrologist, and then we potentially go to the Royal Melbourne Hospital (where Tamara and Sally had their kidneys) for an ABO incompatable donation.

So that is good!

I have to admit, and I discussed this briefly with the neph the other day when I was seeing him, that I still have a degree of feeling of responsibility about the whole thing - as in if I accept his organ(and start hating tomatoes, mushrooms etc  ) and then something happens to him down the track that could be traced back to his donating... well yeah I would feel responsible for that. Yet I know that it's only a "what if..?" and may never happen, and of course that it is his wonderful choice to want to go down this path. It's still something i mentally am trying to decide about. Obviously I understand I still have the ability to say "no" but then how ungreatful does THAT sound making him go through all these hoops *for me* and then saying "well no actually I don't feel comfortable with this" and then having him feel rejected, hurt, etc. *sigh*

In a way I just want that cadaveric call to come my way so I don't have to make this choice. Does that even make sense or do I sound stupid??? Someone please slap me around and inform me what is right!! 

[kellyt]

I understand what you're feeling, however, I also know that a live donor kidney is what is best.  Better chance at making it and all.  Especially from your brother!      Of course, no one can tell you what to do.      I would accept his gift with open arms and abdomen and stop the "what if" thinking.  We live in a great time to have living donors. 

[cariad]

I had very similar feelings, Richard, except I would never accept a cadaveric kidney because it would mean I could not do the trial. I wanted Gwyn to back out, and yet I really did not. It is really such a confusing set of emotions and definitely a choice I was hoping would be made for me in some magical way. (It wasn't and I'm still a relatively sane person, so there's good news.)

I think it makes perfect sense for you to want that cadaveric option over your brother. Then, if something goes wrong, it is still devastating but you won't have to confront the emotions of the donor, and feel guilty while your brother may actually suffer his own feelings of guilt that his kidney didn't work. Has he gone through the psychosocial part of the eval yet? They should ask him how he would feel if your transplant fails and what type of relationship the two of you have. I was warned by some member of a transplant team once that often when one spouse donates to the other, the relationship ends in divorce shortly after a transplant fails. I am sure there would be some awkward feelings that would need to be addressed should the unthinkable happen.

Can you talk to your brother about these things? I know Gwyn could never have this sort of frank, personal discussion with one of his brothers, but could you? (with your brother, that is, not one of Gwyn's!) "I am so grateful that you have offered to do this, but I am reluctant to accept because I would be wracked with guilt if something happened to you" and see what his response is?

What is right is what's right for you. (I know, aren't I the helpful one!) If the call comes, grab it, but I think if it doesn't and you complete testing, hmmmm..... maybe the universe, or a certain psychic, is trying to tell you something. No slaps, either, just hopes that you are near the end of your dialysis journey.

Oh, and if you become a tomato/mushroom loathing vegan, I'll take you to lunch and pick up the slack from your plate. Problem solved!

Good luck, Richard! It is a hard gift to accept, but I know that if it happens, you will accept it with as much grace as anyone ever has.

[Riki]

I remember having a similar conversation with the transplant coordinator once.  I told her that since I had already lost 2 kidneys, I was afraid of taking a kidney from a living donor, because I wasn't sure if I would be able to face them again if their kidney should fail too.  What she told me is that I would have to get into the mindset that the kidney is no longer theirs, it is mine.  I don't think I'll have to worry about that, though, because no one has ever stepped forward and offered to get tested.

[RichardMEL]

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

Could I tell my brother what I'm thinking/feeling? Yes and no. He's actually not in such a good place generally at the moment - a lot of things going against him from his love life to lack of a job for 18 months and even his football team let him down (they got to the grand final 2 years in a row, and missed it by a kick).... I know he is feeling this very personally (and who wouldn't?)... could I really tell him that all the crap he is going through with tests and stuff... well I'm not sure how I feel about it? I sort of can't do that to him.

And yes, I feel that if all the testing comes through and it's given to us as the option I will say yes, despite my feelings, because I know he knows the risks and is willing to make that choice *for me* - and how could I refuse such a beautiful selfless gift???

Yes, you are right, if I had a cadaveric donor and it fell to pieces, at least i wouldn't have that extra to worry abotu of his guilt or anything like that - that is also something that I worry about.

I do not think he has had the psych test yet - not sure when that comes into it. I've already been through one with my sister though (it was an absolute joke though because they just had both of us sit together and talk for abour 45 mins - not even getting us seperately to talk about our feelings etc.. which seemed odd to me).

And yeah, I know the psychic prediction IS in the back of my mind!! 

I guess we'll just have to wait and see what happens. At least this is one step further along the line.

[MooseMom]

Richard, my love, you are being self-indulgent.   I refuse to believe that a man of your wisdom would for a second think about turning down the opportunity to live a "normal life" AND refusing your dear brother the chance to give you a priceless gift because of a worry that you MAY feel guilty for something that MAY happen.  You are twisting yourself into an existential pretzel with all this twaddle about guilt.  You and your brother have had many many months, with more months to come, to educate yourselves on the risks and benefits, and you have to give yourselves credit for being intelligent enough to understand your choices.

What would happen if your brother became ill and needed you to look after him, but you couldn't because you were stuck on dialysis because you felt too guilty to accept his kidney.  Would you feel guilty THEN?  You could dream up all kinds of scenarios where you played the villain of the piece and could wallow in guilt, but we all know that there are no guarantees.  Guilt can be arrogant and self-indulgent.  Gratitude is generous and loving.  Acceptance of a gift is humbling.  Let your brother save you if he can.