I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Potential Donors => Topic started by: Poppylicious on October 15, 2010, 10:15:57 AM
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... when the living donor coordinator doesn't reply to your emails? Four to six weeks they said, when they took copious amounts of my blood ... it's been seven. Surely the tissue has been typed by now? I want to know if I'm a friggin' match! I wouldn't mind but it's either knowing I'm compatible with Blokey so that we can get on with it, or knowing I'm not so that we can start trying for a baby. Either way, our future is in their hands.
>:( < angry-ish face.
Of course, she might just be on holiday this week, but even so ... tsk.
(Just needed to rant in a quiet space.)
;D
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How fantastic that you have looked into being a donor for blokey! This is even better news than your new bathroom! Do you think it might be a good idea to phone the coordinator directly for some answers? I don't see why it should be taking this long!
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Do you think it might be a good idea to phone the coordinator directly for some answers? I don't see why it should be taking this long!
Quite possibly, but I have a phone phobia so I have to do everything by email. However much I want to know, I just can't pick up the phone to find out.
;D
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ohhhhhh poppylicious....... this should probably be 'priviat' message butttttttttttt, seems we have some of the same issues :( I see your "shy" icon (or waht ever thats called..lol) (im social phobic not 'just' ha! shy) and now the phone thing, and i have ohhhh so many more than that. Now, i will say that i can pick up the phone and 'initiate' a call, but i for the life of me cannot answer a phone, even if i know whos calling. I dont need to change this into an 'issue' thread,,lol, but just to show that we here have other things in common besides kidney stuff.. .......... Is that a good thing? lol
oh yea,,, congratulations on your efforts to be a possible donner for hubby. I 'finally' offered myself up for that as well, but so far, they're saying hubby needs much more than kidney :'( so havent gone further. I will love to follow your pregnancy if it goes that way too. Either way, im hoping for someone to get to gettin so you can get the show on the road :-)
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This is mind-blowing. I have a phone phobia as well, or did have. I am over it now and actually enjoy talking to people on the phone but I used to ask my husband to make every call for me. That doesn't work so well when one is seeking personal medical details, needless to say.
Poppy, I know it's easier said than done, but you may well have to take a deep breath and just make that call.
If I were there I would phone for you (and would probably enjoy it, too - I like asserting my rights and the rights of others with medical people). Could you get someone else to call for you? Emails are too easy to ignore.
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I have a huge phone issue too! Always----hated the phone as a teenager! Love caller ID! Love, love email and facebook! Who knew so many had a problem with phones?
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Ha! I love this place! Most people I know in Real Life find my phone phonia really odd, and they just don't understand it. I didn't mind the phone when I was a teenager, my problems came later. I never think twice about ringing/picking up the phone when it's Mumsy or Blokey, but anyone else (even my siblings) and I panic. Oddly, if I *have* to talk to someone I *can* do it (for example, when the transplant coordinator rang me when I first enquired, and when the bathroom man rang, and when I *had* to ring my mobile provider for something.) I think my main issue is the actual thought of using the phone. It's really weird, and so difficult to explain to people who just don't get it. I'm sure that if I sat down and thought about it, I'd probably be able to pinpoint the cause.
Yay! for you lovely folk for understanding!
;D
Poppy, I know it's easier said than done, but you may well have to take a deep breath and just make that call.
You're right, and I will if it gets to Wednesday and I haven't heard anything. Of course, on Wednesday I'll probably just say, 'Oh, I'll just wait till Friday, maybe they've posted me something ...'
:urcrazy;
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I want to join this club also! I will answer the phone if its my parents or children. Any one else better leave a message and then I decide if I want to talk. Thank heaven for caller ID.
Poppy don't put that call off until Wed, call mon and get it over with! Hope it will be good news.
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I also have to join this club, but I cant be president, because I dont go into a turmoil or anything when the phone rings, I just HATE talking on it. HATE it. It is like such a big intrusion into my life that sometimes I just wont answer it. Like Poppy, tho, I wll always put off making calls until the last minute.
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I tell my husband, just because it is a good time for someone to call me, doesn't mean it is a good time for me! I now turn the ringer off if I am napping or resting. Our rest is too important to interupt. I sound very anti-social, don't I?
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I have a phone phobia too. I don't answer the phone unless it's my parents, and sometimes, even if it's my dad, I don't answer, or my little brother. He calls my cell, and I answer cuz his ring is Stephen Colbert saying, "show us your t*ts" and it makes me laugh. I don't like making phone calls, and when I know I have to make a call, like when it's something to do with credit cards or some kind of govt thing, I have to psych myself up to do it. I think it comes from working in call centres, and hating the last year of it. I've never been more happy to leave a job in my entire life
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Well damn there goes my secret plan to phone you and breathe deeply at you (hey, I breathe with a accent) >:D >:D >:D >:D >:D :rofl;
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I have to psych myself up to do it.
Exactly! Sometimes it can take days, and sometimes I never get psyched up enough and just don't bother.
Well, I emailed the lady again. The second one was a little bit shirty. She sent me an email back apologising for the delay and asking me to ring her back.
*screams*
then,
*laughs*
So, I just did it. I took a deep breath and phoned. I decided it was important enough. Yay me!
She wasn't there, so a nice chap said he'd get her to ring me back. Now I'm panicking slightly as I wait for the phone to ring.
*sigh*
Well damn there goes my secret plan to phone you and breathe deeply at you (hey, I breathe with a accent) >:D >:D >:D >:D >:D :rofl;
Was this aimed at all the lovely phone phobic ladies?!
;D
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aimed at whoever wants to send me their phone number - and then panic!!! :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl;
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I've spoken to the lady. She waffled on for a bit, but the general gist is that I can give Blokey one of my kidney's. Next up is a fasting blood test, treadmill test, a meeting with the renal counsellor and a kidney scan (to make sure I have two of the little buggers.) She mentioned numbers, I became confused, she said she'd explain it all to me when she sees me (probably two weeks.)
The only issue is my weight ... I need to lose about a stone (14 pounds). Unfortunately I think that's going to be hard. I've lost six stone, one and a half pounds (85.5 Ibs)
*pauses for the applause*
in the last 16 months and have plateau'd. My body just doesn't want to lose anymore at the moment; I've only lost about 9 Ibs in the last three months. I'm hoping it's not psychological (my mind and body could be working against me because of the kidney donation) and that knowing I can donate - and on top of that, knowing that the sooner it happens, the sooner I can have a baby - will be the incentive I now need to shift the extra poundage.
So, regardless of whether anyone comes here to cheer me on, I'm going to promise myself that I'll come here every week to plot my progress (I go to WW meetings on Wednesday evenings).
I'm quite good at breaking promises, mind.
;D
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Oh, Good For You!!! :clap; :clap; :clap; Just think...maybe in the not too distant future, you'll have a closer to normal life with a healthy blokey and a happy little punkin!! Your svelte self will be able to make all of your dreams come true. If that's not incentive, I don't know what is. To be able to relieve suffering and bring new life into the world...Poppy, think about that! How wonderful!!!!
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Here is a standing ovation :clap; :clap; :clap; :clap; 85.5 pounds!!! Amazing! You can do these last few pounds :2thumbsup; I just can't say enough about what you have accomplished. Not many people could do what you have done. :cuddle; I'll be looking for your next update. Go Poppy!!!!!
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Good for you Poppylicious!! :yahoo; Here our BMI has to be under 30. I want to be a possible donor for my husband and since July I have lost 27 lbs. I was stuck at 86.7 for a while and then one day I stepped on the scale and I was 85 on the nose. Now I am lingering between 85 and 85.5. I want to get down to 80 by Jan or Feb it is so hard, but I am gonna keep battling :boxing; ! As for the phone. I am a 911 telecommunicator, Police, Fire, EMS dispatcher for a Township police department. I used to love the phone, but now I hate it. Even when my husband or my mom call I dread having to answer and talk. I do it for 12 hours a day and by the time I am home the last thing I want to do is talk on the phone. Keep up the good work Poppylicious that is something to be proud of, losing weight is hard work!
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Well damn there goes my secret plan to phone you and breathe deeply at you (hey, I breathe with a accent) >:D >:D >:D >:D >:D :rofl;
well, there's always voice mail.........
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@ Richard .......and texting! Oh, never mind. You have problems with cyper space eating your texts so the intended receiver never gets them. :rofl;
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I don't know.. texting might not be too bad.. at least it's not so hard to do with one hand...... :shy;
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RichMel you can call me and breathe deep anytime!
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RichMel you can call me and breathe deep anytime!
*gasps*
;D
Just an update ... my Facebook status currently reads: "Poppylicious is proud to announce that her ultrasound this morning revealed two (perfect) specimens, despite one being a tad hard to find ... (this will not mean what you think it does *chuckles*)"
Oh, and I've now lost 89Ibs (3 and a half in the last month). Now that they've changed the WeightWatchers to ProPoints I'm a little more motivated.
;D
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Okay, 96Ibs. It's sooooo slow.
And my adventures with the whole evaluation process are in my 'dialysis' blog (link below) if anyone is interested.
;D
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Oooo Poppy, you are getting there! Congratulations and keep up the good fight, my friend. :cuddle;
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Thanks Looney!
Kay - I was nuked last Tuesday and had to stay still for a whopping twenty minutes. It's not so bad but they make you drink lots and lots of water in preparation and so my bladder was fit to burst by the time it was over. And the toilet was waaaaayyyy down the corridor!
Two stone is definitely do-able! I think I need to lose about another stone (or just over). Do you use anything to help you? I'm a WeightWatchers gal myself, although I have lost a lot and it is getting harder.
Feel free to ask me anything ... I'm assuming that you'll go through the exact same process down in Sussex as I'm being subjected to in East Anglia; it will be interesting to know if there are variations in different parts of the country.
Good luck!
;D
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Hey Poppy another flatland native I hail from East Anglia too.
I got told last year by the Transplant Surgeon I needed to lose a stone and stay fitter as they were tightening up the transplant list requirements.
I and a friend went to Rosemary Conley classes, diet plus weekly aerobics class. Didn't think I would but quite enjoyed it, bit of a giggle and I lost nearly 2 stone quite readily.
As you will see from my post I had second transplant in Dec10 so having a break til fully recovered and kidney working fully too.
Good luck.
:boxing;
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Also Poppy they offered me Orlistat.
Avoid at all costs has terrible side effects.
Wonder if your transplant surgeon same as mine!!!!
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Go Poppy. :clap; :clap; :clap; All the best with the weight loss and hopefully, the donation of a kidney.
My hubby tested to be a donor for me and was told he was predisposed to kidney stones and that ruled him out - he has NEVER had one kidney stone! He weighs 110kg (around 17 stone) and his neph said his weight wouldn't have been an issue. We're in Australia. However, the transplant team I see every year said the weight would have been an issue as the surgery would have been difficult for him. I still wish he had got the green light!
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Also Poppy they offered me Orlistat.
Avoid at all costs has terrible side effects.
Wonder if your transplant surgeon same as mine!!!!
Ha. We have oodles of Orlistat in the cupboard from when Blokey was using it. When I was first losing weight I used Alli. I have to admit that during a recent episode of frustrating non-weight loss I used some of the Orlistat (I'm not sure it's allowed what with it being a prescription only drug; it's double the dose of Alli) and it made no difference at all. So I didn't use it again the next week. I don't think I consume enough actual fat for it to work. *shrug*
If I say I'm being seen at A in C (with the neph Dr. P) does that make sense to you? I'm being intentionally secretive, obviously. I like to keep some things on the quiet when on a public forum!
;D
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;) I'll send you a pm
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I'm tiptoeing back into this thread to announce that Blokey and my left kidney will become very intimate in the middle of October.
I'm now tiptoeing back out of this thread because I don't want a fuss.
;D
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Congratulations!!!!! That news deserves a big fuss!
Pam
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Okay, fine, Poppy. None of these, then... :bandance; :bandance; :bandance; :bandance; Or these... :yahoo; :yahoo; :yahoo; :yahoo; Not a single one of these.... :cheer: :cheer: :cheer: :cheer: :cheer: :cheer: :cheer: Not so much as a cheerful little drinkie in your honor, like these.... :beer1; :beer1; :beer1; :beer1;.
We keep it low key and not fuss then!
;D
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oh, that is so ab fab! You know, the wonderful thing about this is that you BOTH will have vastly improved lives! Not only will he be able to live without dialysis, but YOU will get to live without dialysis, too! You can both just get on with having a normal life together, so you BOTH have won the lottery! Well done you!! :cheer: :cheer:
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... when the living donor coordinator doesn't reply to your emails? Four to six weeks they said, when they took copious amounts of my blood ... it's been seven. Surely the tissue has been typed by now? I want to know if I'm a friggin' match! I wouldn't mind but it's either knowing I'm compatible with Blokey so that we can get on with it, or knowing I'm not so that we can start trying for a baby. Either way, our future is in their hands.
>:( < angry-ish face.
Of course, she might just be on holiday this week, but even so ... tsk.
(Just needed to rant in a quiet space.)
;D
Poppy,
Communication is very important not only during workup, but after a transplant as well. If you are not receiving adequate communication now, its likely not to get better unless you do something about it now... Why not give the coordinator a call? Your coordinator more than likely gets hundreds of emails dialy. If you have a problem after your transplant, you are not going to want to let them know by email, you are going to want prompt response....Not to say you will have an association with the coordinator after. This is your right to know the results....
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:clap;:clap; Congrats to you and your DH! :yahoo; :yahoo;
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That is great news that you might be a donor! Stress can keep the weight on. In my opinon, if you want to lose the little bit of weight you need to you have to really watch HOW MUCH your eating more so than excersing. That's how it works for me.
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Oh boy Poppy, such wonderful and exciting news. I am happy for both of you. ( I am not fussing )
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Just one little :cheer:
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The Living Donor Lady rang me at lunchtime and offered us the option of having the transplant done a month earlier. This is very much open to last minute cancellation; they'd be doing two live donor transplants on one day and an emergency cadaveric transplant would (obviously) take precedence over us (as the second couple) if the operating theatre was needed.
Um, no! I'm not psychologically prepared! And I'd be even less prepared for it being cancelled. No, we'll keep the definitely 100% going to happen October slot please.
Silly? Maybe.
;D
(53 days - I counted.)
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Its certainly you and your donors decision to make based on what makes you most comfortable. I faced a similar decision. The difference was I was doing poorly on dialysis and the surgery was scheduled to be the first of the day. We chose the earlier date because I wanted the hell off
of dialysis as soon as possible. The earlier date cost me several thousand dollars of lost wages because of the periodic nature of my job but all went well medically. Your situation may be very different however so good luck to you and your decision.
Ed
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ohhh my goodness gracious.... just chatching this and sooo excited! (and jbeany your halarious) And so i dont have to celebrate too loudly, i'll just jump in, or sneak in on jbeanys post... Im so happy for you and pretty sure i'd be on the sticking to the 'original' plan as well.... unless! they were to call and say RIGHT NOW!! then that would save the pre-stress alltogether ...
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Holy Hannah...no fuss intended...how did I miss this transplant news bulletin? I'll tell you how...too much tiptoeing in. That's fantastic Poppy and we'll be right there with you all the way. :flower;
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I've tiptoe'd in again (I know, I shouldn't tiptoe, but I honestly don't want a fuss) to declare that I'm feeling ever-so slightly fragile this evening. I wouldn't normally advertise but I've written a blog post about it (link below in my sig; the dialysis one) and I don't want to keep festering over it.
I suppose I just want someone (yes, you ... the one person who's reading this!) to give me some much needed *huggles* and tell me that it's normal to feel this way, everything will be okay, and in thirty days it will all be just a memory (albeit with added pain) ...
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Awww girl, I would be frightened too. I was a wreck before Jenna's transplant, I was in absolute agony secretly worrying something would happen to her or her donor. I cannot imagine what it would be like going into surgery MYSELF and someone I loved was too.
Will you ever be totally at ease? Probably not til the anesthesia takes effect.
You've had months to think about this and I'll bet it's stressful.
BIG HUGS for you. :grouphug; :grouphug; :grouphug;
In my opinion there is no greater calling that a living donor. :bow; :bow; :bow; I admire you and I hope the next 4 weeks go well and you can get ready and feel at peace.
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:cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow. ~Mary Anne Radmacher
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Thank you, lovely ladies. I feel a tad better/peaceful even though we received our letters today confirming times and wards for the actual op, plus pre-op arrangements for the week before!
I imagine I'll just get used to feeling all over the place over the next few weeks. I'll survive!
;D
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You will survive but in the meantime here are many big reassuring hugs :grouphug; :grouphug; :grouphug; :cuddle; :cuddle; :cuddle;
and some of these are in order probably, too. :bow; :bow;
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Thank you, lovely ladies. I feel a tad better/peaceful even though we received our letters today confirming times and wards for the actual op, plus pre-op arrangements for the week before!
I imagine I'll just get used to feeling all over the place over the next few weeks. I'll survive!
;D
Don't hesitate to let them know you are anxious. I've even had valium prior to dental work, I get myself so worked up. Get the good drugs, early and often! ;D
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I only just read this thread from beginning to end and I just want to join the ranks of the folk who hate phones. I hate phones. I am always doing stuff, talking to someone, reading something, whatever it is, and the phone person thinks I'm sitting around waiting for something to happen. If I'm talking to someone, I wont answer my phone. I figure, the only reason the phone person is interrupting is because they can't see we're busy right now. They don't mean to BUTT IN.
Anyway. Hope you and Blokey are having a nice night in watching telly, or maybe these days you have nights out watching bands? :grouphug; :grouphug; Plug on kidney.