Mixed feelings

[KICKSTART]

Just before christmas a guy on our unit got a transplant and i couldnt wish it for a nicer guy. I talked to him quite a bit at D and he promised to come back and see us all once he had recovered. True to his word he did come in and see us and to see the 'glow' in him reduced me to tears, he looked so healthy . He came round and chatted to a few of us that he used to talk to while on D and it gave us chance to ask him things . But now he is popping in most weeks and talking like 'normal' people do about having a good old drink (not beer) about eating food he was never allowed and how good life is in general. Now i know its not his intention for one minute, but it feels like he is flaunting his transplant in front of us and its left me with mixed feelings about him coming in, partly because i will never get a transplant and partly because he stands there in front of me, didnt do half the time ive done on dialysis and yet he has escaped it. I feel awful for feeling like this. One visit great , an update now and again good but weekly visits ?

[tyefly]

  May I ask why you cant get a transplant....??

     

[KICKSTART]

Because im on my own and have no one to go through that journey with me , i have no family, so think its better going to someone who has. (oooops sorry MM i just used the 'J' word !)

[MooseMom]

Wait a minute...I can't tell if you are serious or if you are depressed.  Are you really telling me that you would deny yourself the opportunity to get a transplant just because you are on your own?  Are you on the list? 

As for thinking a kidney should go to someone else and not you, I'm rather speechless.  Why?  Who gets to make that call?  How do you know that the next person to get a kidney in the UK isn't someone thoroughly selfish, unpleasant and secretly hates his wife?  Transplant people are not in the business of getting to decide who will be more valuable to society after a transplant.  So what...you have no family you can rely on.  With a transplant, you may have the free time you'd need to do something really special for whomever you wanted.  You could fight for people with CKD who are facing this alone.  You could do a lot more than babysitting other family members who treat you like crap.  If you want justice for yourself, get yourself off D if you possibly can and go out and help all of the people still on dialysis.  (I realize I'm ranting without any real focus.  This just upsets me so much that I'm spitting on my computer screen.  I'm sorry!)

I'm really glad that fella got his transplant, but something happened to him along the way.  He may have gained a kidney, but he sure lost perspective.

[willowtreewren]

Hellooooooo!

You need Rightside to give you a good talking to. He got a transplant just weeks ago. He is on his own. If he can do it, so can you.

There is NO REASON, none, zip, nada that you should not get a transplant. If you are not on the list, GET ON IT girl.

That's it.

 

[monrein]

Your feelings are exactly why I don't go back to my unit to visit (I've only been back once this time around)....my concern that others will feel as you do KS...and yet the other day while waiting for bloodwork I ran into a woman named Cruz who was on the same shift as me.  She was there getting worked up to go on the list.  She told me that another older woman had been transplanted and another who had before refused to go on the list was now considering taking a kidney from her husband.  Cruz doesn't speak English very well but she said that my transplant had encouraged people to go for it.  Our unit is a small self-care unit and I made a point of often talking to people there about my transplant experiences and also my approach to D.  We caught up on some other patients as well and she was excited to tell me that two people had started doing their own needles after watching me and thinking they might try.  I told her why I hesitated to come back to visit but she seemed not to understand why I'd worry and she thought I should drop by.   Life is confusing.   I do feel amazingly, wonderfully well and don't feel like hiding that fact but sure don't want to hurt anyone.

Kickstart, I also think you should get on that list if there are no physical things stopping you from a transplant and just take the plunge if the chance comes up.   I definitely would still do it on my own...hell life has limited enough things for us without us imposing more limitations.  It's not like you're feeling wonderfully well on D.

[MooseMom]

There is no reason at all to hide the fact that you feel wonderful with your new kidney.  We WANT to see people feeling well after transplant.  We WANT to see that things can get better!  That's the whole point of getting on the list in the first place!  But you never know which other patients in clinic are eligible and which are not.  So, while it's not necessary to hide your good health, maybe showing it in a clinic on a weekly basis is unkind.

KICKSTART, monrein makes a very good point; this disease limits us enough without us willingly imposing even more limits on ourselves.  Your unit is awful, and if you can at least get on the list, that's one step taken to get out of there asap.

[KICKSTART]

In 10 years ive never put my name down for a transplant and i dont think i ever will. You need someone to support you through it, at very least your family. I couldnt imagine going into hospital alone to face that and not even having a visitor , then coming home to an empty house and having to get on with it.

[cariad]

I would visit you, KS. I would so love to be able to promise to be your support person, but we have been discussing a return to the UK for 5 years, and it still has not happened.

Please get on the list. Once you are on, the rest is under your control. You get a call and you don't feel it's right for some reason, you say 'thanks but no' and go on your merry way.

If we do make it back to the UK, we would likely be in the midlands or south, but I would happily come up and help you out if you got the call. No one should have to give up on a transplant just because they got dealt a crap hand for family. I don't think I would have gone for a transplant if it had been up to my family to support me. What is the saying that we see on here frequently? Friends are God's apology for family? Something like that. Let your IHD "family" step up where your biological family has failed you.... 

[KICKSTART]

I cant put into words what i would like to say ..thankyou cariad

[Poppylicious]

Kickie, I would come and visit you if you were on the list and got The Call.  Seriously, I would. Get yourself evaluated and placed on it immediately young lady.

How do you know that the next person to get a kidney in the UK isn't someone thoroughly selfish, unpleasant and secretly hates his wife? 

If Blokey gets The Call this evening I won't know whether to laugh or cry now! (Not that's he's the first two, but what if it's the third!)

As for the chap and his transplant ... it's likely you're not the only person who feels this way, but us British are a bit rubbish at complaining (although we are getting better!) Perhaps you could have a word with a member of staff and they could either find some excuse not to let him in every week, or they could have a word in his shell-like. 

*huggles*

[gaelicdevil]

Well Kickstart you sound like a solid Lady to me. I am in the same boat but I am not ready to die. I will flirt with you and keep you company. Might be from afar but still here. I am an Irish bloke but was raised as a Yank. At least we have a few things in common. I was a biker before the neuropathy stole my legs. And now the eyes are going as well. So if you have any interest in an aging, stumbling, blind , diabetic, no kidney function Lad, I'm your guy. Attractive, eh?

[willowtreewren]

Do I detect IHD becoming a match-making service???

 

Wouldn't that be grand? 

Aleta

[Sax-O-Trix]

Kickstart  

[KICKSTART]

Well Kickstart you sound like a solid Lady to me. I am in the same boat but I am not ready to die. I will flirt with you and keep you company. Might be from afar but still here. I am an Irish bloke but was raised as a Yank. At least we have a few things in common. I was a biker before the neuropathy stole my legs. And now the eyes are going as well. So if you have any interest in an aging, stumbling, blind , diabetic, no kidney function Lad, I'm your guy. Attractive, eh?

TO be sure to be sure !  Just tell me being irish you have a love of horses !

[gaelicdevil]

Haven't rode one in 10-12 years. Send me a private message and I will give you more personal info. Ta-Sean

[RichardMEL]

WOW KS - is this really the only reason you won't consider a transplant? Have docs talked to you about this??

While I have had family around me can I say, in general, they were pretty useless. Now please don't mean that to say I don't value them or anything like that - far from it - but the fact of the matter is there is bugger all they could do to help me through my (current) transplant journey. Oh yes, my sister could grab the odd thing for me from home, but that's pretty trivial. Yes, my sister had me at her place for a few weeks when I got out of hospital, but that was more my idea and probably I could have doner just as well at home on my own when I look back on it, because apart from cooking meals she was working and stuff, so I was mostly left to my own devices anyway (this is NOT a complaint just how it worked out) and my brother left for India a couple of weeks after my tx, so he wasn't even in the country. I even walked myself home from hospital (ok ok it's a 3 minute walk, but still!) and got all my stuff to my sister's without anyone's help.

Don't get me wrong I understand what you're saying re visitors and stuff, but then again half the time I was either asleep or whisked off to do an US or some other test and I wound up seeing not that many people, or if theydid come I was tired or sleeping or whatever.

I think you should not let this stop you trying for tx. Why not discuss it with the neph and see what their opinion is? You've been through so much - imagine how wonderful it could be to get that transplant?

Anyway back on topic about visiting the unit. Your concerns are EXACTLY the sort of thing I worry about in terms of when I visit my D unit. I do NOT want to "rub it in" to the other patients yet the staff want to catch up and chat, so lately I go in, say a quick hello to the patients I know well and then go sit with the staff, hopefully in their break room so it's not in front of the patients, and talk about my trips or whatever. I am very conscious of how they would feel - as you say mixed - they all say how good I look etc and I do feel bad that it would be like rubbing it in.

I have been visiting much less though both for that reason and also because I'm busy with work and having o be at hospital less and less (which is a GOOD THING) for tests and clinic and stuff as I stabalise, so it sort of goes hand in hand.

[okarol]

The task that transplant teams insist on is the numerous clinic visits and blood draws in the 6 weeks following the transplant - and the patient is not allowed to drive. Other than that there doesn't seem to be an obstacle to being alone following release from the hospital. How far away are you KICKSTART?

[KICKSTART]

Thanks guys for the offers, the advice, the kind words , but ive laid out my plans. Its my intention to carry on with hemo (god or whoever decides willing) till my beloved dogs go to Rainbow Bridge , then its my intention to join them. My life has been pretty crap in one form or another and i see no reason to prolong it once my dogs have gone. Ive made some wonderful friends on here who have helped me through some bad/low times. This is my escape , thats probably why i post/talk so much ! But in reality im very very lonely. I have a duty to my dogs , i promised them i would care for them as long as they where here with me, but after that i have no obligations , no duty to anyone or anything. What i endure i do for the love of my dogs and you fantastic people on here help me do this. I would not take a kidney and deprive anyone with a passion for life , while i dont have a passion for it anymore.

[MooseMom]

But which comes first, KS, the chicken or the egg?  You have a crap family (sorry, but it is true), are in a crap clinic getting crap treatment...who could possibly cultivate a "passion" for life under those circumstances?  Maybe if you gave yourself a chance to get a transplant, get out of that clinic and start feeling better, it would be possible to become more "passionate"!

And "passion" is overrated!  No one can order you to live your life with passion.  What's wrong with living your life in peace and tranquility, in gentle exercise and quiet contemplation?  No one can say to you, "I'm sorry, but you have to spend the rest of your days on dialysis because you aren't "passionate" enough!"  That's absurd, you silly farty laydee you...

[willowtreewren]

Kickstart, I know you don't need advice (although I would urge you to consider MM's excellent take on it).

But why not get another younger dog? 

 

[Deanne]

Really!? That's why you aren't on the list, KS? I thought it was that you'd tried to be listed and were turned down.

I'm on my own though and am starting the listing process. My family is halfway across the country and I haven't quite gotten around to mentioning it to them yet. I was surprised at how many people, even people I don't really think fo as "friends," have offered to help me. A lady I've talked to three times at work. She doesn't even work in the same building as me. She works about five miles from my building with a former co-worker. A woman at the dog park who I talk to for about 5 minutes a day on those days when we both happen to be there at the same time. You just never know where your support might come from. If that's the only thing holding you back, please reconsider. Whatever you do, I resepect your choice.

[MooseMom]

But why not get another younger dog? 

 

That's IT!

We're gonna send you some puppies!  You'll have to keep going and going so that you can stay around to look after them!  What a scathingly brilliant idea!

[Sugarlump]

One of my neighbours offered to help me out, I only knew her to say hello to really and she looked after my dog, my cat and my house for  three weeks whilst I was in hospital having transplant. Even hoovered my house and changed sheets on my bed for my homecoming and walked my dog til my kids came home for Christmas. I sent her a big bouquet of flowers to say thank you and we are now firm friends. There are those people out there ...     
And again when I had to go back in for biopsy , she did it again ... such a star!

[MooseMom]

You really never know when you might come across someone who will help you out.  But I confess that there are many times when it is easy to despair that anyone really gives a 4XXXX about what happens to you.