is it all going wrong??

[MooseMom]

Oh, you must have been absolutely terrified!  But now you can rest and be happy!  I'm so glad things worked out OK.  Please be prepared for other little bumps in the road.  IHDers who have been blessed to be transplanted have made me realize that as wonderful as tx can be, it does come with its own kettle of worms.  As time passes, I'm sure your confidence will grow.

Congratulations on your new life!

[lainiepop]

thanks moosemom. I'm just finding it tough at the moment, I feel pretty weak & Stressed & tired, its fustrating as I felt better on a GF R of 10 & now I have the best function I've ever had in my life Why aren't I bouncing off the walls ?! I guess I have to give myself time to recover & get over this infection but i'm inpatient to be normal ag ain for the kids x

[MooseMom]

thanks moosemom. I'm just finding it tough at the moment, I feel pretty weak & Stressed & tired, its fustrating as I felt better on a GF R of 10 & now I have the best function I've ever had in my life Why aren't I bouncing off the walls ?! I guess I have to give myself time to recover & get over this infection but i'm inpatient to be normal ag ain for the kids x

Well, I'm not surprised you're finding it tough!  Let's recap, shall we?  You've had a life changing event (your tx) which is dramatic enough without the added worry of having your father as your donor.  Being worried about his welfare is assuredly an added source of anxiety.  You've had major surgery which in and of itself is just tough.  You know, every day people have surgery, so it's rather commonplace, but we forget how traumatic it really is.

And the drugs!  Let's face it...your newly operated-on body is being subjected to a pharmaceutical assault, and you just cannot expect to get through THAT completely unfazed. 

And then there's the terror that all is going wrong with your new kidney.  It takes a while just to recover from THAT!

And then there's the kids and the other bits and pieces of life that don't stop just because you've had something minor like a KIDNEY TRANSPLANT!

So, have a little mercy on yourself, and everything will be fine.  No one said it was going to be easy, especially in the early stages, and it will take some time before you really start feeling like it has all been worth it.  But you will get there.  Each day brings you closer to recovery.  One day at a time, one foot in front of the other.

[WishIKnew]

Moosemom is so right!  The hardest time for me was not the transplant and recovery, it was the week or two after the infection and re-hospitalization post transplant.  You feel like shit physically and even worse emotionally while at the same time you're telling yourself you should be happy and healthy and normal.  Try not to should on yourself.  Let people know that just because you are home does NOT mean you don't need help for awhile more - like a month or two, really.  It takes time.  You WILL get there!  I think of you often and send positive energy your way.  Hang in there!


 

[lainiepop]

thank you both of you are right. I'm feeling bit better today, more hungry & been out twice for a bit. I think my own expectations are part of the problem!

I do forget What my body has been through too. I know I was So fortunate to avoid dialysis but I Was pregnant November 2O10 had c section 1st July 2011, told Kidney had given up end Aug 2011 when I was still hormonal from Section & baby, transplant for Feb was cancelled for Concerns with my bladder Structure then finally Less than a year after my Section I have the transplant. Plus it took 18 mths to Conceive my daughter so have had a few years of stress and worry.

usually i look at everything in my life as miracle gifts, my own kidney givibg me 30 yrs, my husband son and daughter and dad giving me his kidney, but since the op, particularly as the other patients in with me were 50 plus i have had noments of why me, im 30 with i young family i wanna raise them like everyobe else then deal with this rubbish! but then i was down on readmittance. abd i think the drygs are making me iver emitional! feel bit more positive now but still anxious does that ever stop? once ive had this stent out hoping things get back to normal soon after.

anyway been out and got some stuff for lena's 1st birthday its 1st july we'll have a party diwn here and a belated one with her friends back in bournenouth si gonna ficus in that and hope im not ib hospital for her birthday.

thanks for listening xx

[lainiepop]

ok Latest Dad's had to go to A & E Cause he feels so bad. Feel so worried & guilty.

I dunno what's going on. mum told Steve (hubby) he has to Stay cauSe We need help  & I Started crying  & telling him how angry I am with his parents swanning off to Australia for 2 wks monday with all this going on, they knew the timing  & without sending me or dad a card  & I guess Lena won't get one either for her 1st birthday I'm finished with them its not good enough all they care bout is themselves. And I'm annoyed With him Cause he never Says anything to them, mvm 's had a bit of a go too!

Sorry for the rant guys just Seems 1ike one thing after another x

[RichardMEL]

OK just catching this thread.

First of all - in your original post I think you wrote that your cr went from 79 to 105 - honestly, can I tell you this? this is nothing. Now yes, you had an infection it seems, and that was smartly taken care of and that's fantastic.. but I'll tell you one of the biggest things I had to overcome post tx was those bloody numbers! Mine would go up by 10 and I'd think the sky was falling. In reality it isn't. Wow, if you had my lab report as yours you may do a head spin or something. Last report it was 128. I'm very happy with that - for me that's stable. To be around 100, and less is freaking awesome. "Normal" (as in good kidneys) range for cr is something like 60-105, so even then you were in mega normal. I know a patient who sits on 180 and is stable, someone else I heard of was 220 for years - 18 i think I heard. Everyone has their levels.. mine can bounce around and we've decided that a range of 20-30 or so for me is OK so if my next lab is 140-145 not to panic - redo in a week or so and see... The important thing, I have realise, is the TREND of ones levels.. like if you went 79, 105, 118, 130.. you're going UP and clearly needs to be sorted... but if it went say 79 - 105 - 94 - 99 - 102 - 85... it's a bit bouncy but also in a general way fairly stable.

One other point on that, without trying to sound like I think you were overreacting to the numbers or anything (I don't think so - I would hjave anyway probably in your situation, and that you knew something was going on which turned into the infection is something that would have needed checking anyway is a good thing). Anyway in US measures 79 is 0.89 and 105 is 1.18 -  that is a difference of 0.3 - I think most people wouldn't consider that a huge dufference. The main thing is that, as with any concern, it's better to be safe than sorry and if at all concerned get checked(which you did!) and it can be handled.. if it's nothing than ok you wasted some time, but if it's something, you get onto it ASAP. Either way good outcome and at the very least you can be reassured that it's not so much to worry about, or get stuck into the meds and she'll be right.

Anyway I guess that is what I was thinking as I was originally reading this thread.

Now just reading your latest that your dad (donor) is in there getting checked out for some reason - you don't say but you seem to suggest it may be related to his donation? It may be - it may not.. but I will say this even if it is related to his surgery... and this is an issue I've struggled with trying to work out ever since my sister was being tested as a match to donate to me - the potential guilt if something went wrong for her post the donation that could be traced back to that act - that I would feel so responsible. Now she never did end up donating to me so that issue is moot, but I've thought about it a lot over the years.. and after many discussions with more or less objective people about it I have come to understand this thing about it - she, like your dad, went into the process understanding the choice, and the potential, but small, risk and that with all such choices it is those who MAKE the choice who take responsibity for those choices and whatever happens. Now you (like me) are human and of course you feel guilt - specially if whatever is going on with your dad is related to the donation - but he made the choice to give this incredible gift to you. I'm not saying it isn't your responsibility or anything, but to understand and accept it was also his risk and his choice to take - not just yours- and I'm sure, even now with whatever he's suffering with - that he feels you being able to get a more normal life with youre family is worth it.

I totally hope it's nothing serious and he will be out in no time and this is, like the infection, a small bump on the road for you both...I will also add that you stressing and beating yourself up about the situation won't help either your dad, or that special gift of his within you.. let alone your family. He's in good hands and hopefully it will be good news ASAP - just as with you.

As for hubby's parents pissing off to oz (where I am)...  I think you just have to try to emotionally distance yourself from those people and their choices as much as it hurts.. and your hubby probably does have a bit of a blind spot when it comes to speaking up to them - I mean they are his parents.. he was brought up to respect/obey them.. perhaps to not speak back or whatever... and while it's easy to sit on the outside and exclaim "Why doesn't he tell them to reassess their priorities and send their daughter in law and granddaughter cards, and be there if they can help during this stressful and difficult time"... it's not going to be so easy for hubby to say that out loud I think. Plus who knows - maybe the trip was booked ages ago and not refundable and they thought there's not much they could do to help in any case... who knows?

Like whatever is happenning with your dad in the A&E right now, you can't control the choices they make.. try and concentrate on things you  *can* influence in your life and make those as positive as you can, ok?

good luck!

[lainiepop]

thanks for your advice Richard. thing is I wasn't that stressed, I'm only Little so a creatinine of 100 Would be fine by me mine's never been less than 120 in my Life, it Was the docs, freaking bout rejection & biopsy! I agree it will fluctuate I don't know why they made such a fuss, I feel they scared me for no reason.

Dad's just been weak From weight Loss, no appetite  & tired all time, they think he has infection too. I will always feel guilt. When in last week I felt guilt if his Kidney was rejecting. just got a call to pick dad up so obviously nothing too serious.

As for hubbys parents they've been this Way for over 7 years but a girl has her Limits you know ?! I always got the impression they never wanted him to marry me cause of my health issues & like the way She words her e.mails she's said stuff like they're so proud of him for how well he's coping with me & everything he has to deal with with me  . What about me?! like I'm a burden or something. you Know they bought him his new phone because of all the upset of me possibly needing dialysis! x

[RichardMEL]

I'm so sorry - I misunderstood that it was the docs freaking out (and freaking YOU out) rather than you... maybe because it's so soon relatively after tx they're a bit excitable... but yeah... it's all good now I guess

And good news that it's not that serious with your dad.... not that infection isn't serious but I think you know what I mean

That MiL sounds like a piece of work - how rude!! Well all I can say is screw them. Obviously your hubby married you for the right reasons - that he loves, adores and cherishes you because you're awesome.. the health stuff is just part of the adventure.... and now thanks to your Dad hopefully a lot easier, in the longer run, for you tolead a more normal life all together. Sounds like them being far away may actually be a small positive for you!! I hope teyre not near me though.. all those steroids may make HULK SMASH!!!!!

hugs,
richard

[MaryJoe]

lanie,
Sorry your dad is still not feeling up to par, but glad it isn't anything too awfully serious.  I hope the infection (if that's what it turns out to be) clears up quickly.  Maybe the antibiotics will do the trick and get him back to feeling 100 % again.

Your MIL seems to be a real piece of work.  I'm sorry she's so upsetting to  you.  You might want to invest in a suit of armour ( they have those where you are, right?  ) for your feelings  since it doesn't seem like she's apt to develop a sense of compassion any time soon!

Hang in there, it's been one thing after another since your transplant and it's no wonder you're felling a little overwhelmed right now.  It will get better.  My grandmother used to tell me "When you reach the end of your rope, tie a knot and hang on!"   

[Poppylicious]

First of all - in your original post I think you wrote that your cr went from 79 to 105 - honestly, can I tell you this? this is nothing. Now yes, you had an infection it seems, and that was smartly taken care of and that's fantastic.. but I'll tell you one of the biggest things I had to overcome post tx was those bloody numbers! Mine would go up by 10 and I'd think the sky was falling. In reality it isn't. Wow, if you had my lab report as yours you may do a head spin or something. Last report it was 128. I'm very happy with that - for me that's stable. To be around 100, and less is freaking awesome. "Normal" (as in good kidneys) range for cr is something like 60-105, so even then you were in mega normal. I know a patient who sits on 180 and is stable, someone else I heard of was 220 for years - 18 i think I heard. Everyone has their levels.. mine can bounce around and we've decided that a range of 20-30 or so for me is OK so if my next lab is 140-145 not to panic - redo in a week or so and see... The important thing, I have realise, is the TREND of ones levels.. like if you went 79, 105, 118, 130.. you're going UP and clearly needs to be sorted... but if it went say 79 - 105 - 94 - 99 - 102 - 85... it's a bit bouncy but also in a general way fairly stable.

One other point on that, without trying to sound like I think you were overreacting to the numbers or anything (I don't think so - I would hjave anyway probably in your situation, and that you knew something was going on which turned into the infection is something that would have needed checking anyway is a good thing). Anyway in US measures 79 is 0.89 and 105 is 1.18 -  that is a difference of 0.3 - I think most people wouldn't consider that a huge dufference. The main thing is that, as with any concern, it's better to be safe than sorry and if at all concerned get checked(which you did!) and it can be handled.. if it's nothing than ok you wasted some time, but if it's something, you get onto it ASAP. Either way good outcome and at the very least you can be reassured that it's not so much to worry about, or get stuck into the meds and she'll be right.

I like your posts Richard ... Blokey panics when his creatinine fluctuates and your wise words always help me be the strong one! 

Now just reading your latest that your dad (donor) is in there getting checked out for some reason - you don't say but you seem to suggest it may be related to his donation? It may be - it may not.. but I will say this even if it is related to his surgery... and this is an issue I've struggled with trying to work out ever since my sister was being tested as a match to donate to me - the potential guilt if something went wrong for her post the donation that could be traced back to that act - that I would feel so responsible. Now she never did end up donating to me so that issue is moot, but I've thought about it a lot over the years.. and after many discussions with more or less objective people about it I have come to understand this thing about it - she, like your dad, went into the process understanding the choice, and the potential, but small, risk and that with all such choices it is those who MAKE the choice who take responsibity for those choices and whatever happens. Now you (like me) are human and of course you feel guilt - specially if whatever is going on with your dad is related to the donation - but he made the choice to give this incredible gift to you. I'm not saying it isn't your responsibility or anything, but to understand and accept it was also his risk and his choice to take - not just yours- and I'm sure, even now with whatever he's suffering with - that he feels you being able to get a more normal life with youre family is worth it.

Absolutely.  I actually planned my funeral (not in great detail, but songs and readings and where and type of casket, etc.) because if the very worst possible thing happened then Blokey was (hopefully due to grief!) going to be in no fit state to organise it.  But as a donor you do go into it fully aware of the complications and the post-surgery issues which may arise. The benefits far outweigh the potential risks which are teeny-tiny. 

Lainiepop, so glad dad is home now.  That must be a relief.  Take lots of care of each other.

*huggles*

[lainiepop]

Dad's gone back in hospital with an overnight bag cause he's no better so we called the transplant team. they think he has an infection he has high temp. Have told Steve he has to come down cause i'm having this day Surgery Thursday  & mum can't stay with me  & have kids.

 As for me had bloods done yesterday morn at transplant clinic & haven't heard back so assume that's positive! if there's something wrong they're quick to tell you ! I'M feeling better now antibiotics have Kicked in am eating Lots trying to gain weight  & energy back Lol , dad needs to but feels too rough.

Having Stent removed under general Thursday x

[lainiepop]

 Hospital just called my surgeon is ill so stent removal op Is cancelled til 2nd July. Never gonna get home x

[MooseMom]

I'm so sorry to hear that your dad is still unwell.  This makes me really angry, actually.  You dad was healthy going into surgery, but now he has as infection which makes me think he caught it at the hospital.  Hospitals are just germ incubators and need to take much better care to prevent just this sort of thing. 

Re the stent, well, these are the things you can't control.  As wonderful as transplants can be, they bring their own set of obstacles.  You will not have the stent forever, and your dad will not be sick forever.  One day at a time...

[lainiepop]

yes i Know moose mom & its hard for Me to see him Like that you Know when I m feeling better, Went shopping today For Lainey'sy birthday Present.

 to be honest re stent might be good delay as means bladder & kidney get Longer to heal they Said originally they wanted to leave it in 4 to 5 weeks  & will be 5 Wks so maybe a good thing, think they only changed it cause things were working so well. Also Means Can hopefully have a Couple Weeks out of hospital  & celebrate Elena's birthday x

[cassandra]

Real glad your home.



         

[MooseMom]

Lainiepop, apologies if I've missed an update, but I've been concerned about your dad.  Is he OK now?

[lainiepop]

MM dad Is fine now thanks We're both doing well.

On monday I had my day op where my urologist put me to sleep to take out my tube & Stent from my different to normal bladder. Had appointment today & bloods were good (creatinine Was 69 today they called earlier, Last wk was in 80s week before 9os & week before 7o to 8o So quite jumpy but all nice & normal) So they've Said i can go back to Bournemouth & made me an app For Tues! means Andrew WILL be back for last 2 wks at pre School.
But i'm So Worried bout going back, cant Shake feeling Its gonna go wrong, does that ever go away?! & also no transplant Surgeons at home so feel more comfortable here.

Anyway am Looking forward to seeing Friends & church peopLe & getting kids back in routine they Wouldn't Let me home if they were worried xx

[MomoMcSleepy]

Lanie, glad things have settled a bit and you are home.  I hope everything goes well and you continue to improve.  And yes, in-laws could fill quite a bit of space, I'm sure everyone has something to say....I  would want all included, though, not just MIL'S  I love my in-laws, don't get me wrong!  It's an interesting relationship for everyone, though.

[MooseMom]

I can understand your reluctance in going back home; you'll miss the security of having the tx team closer by.  Such anxiety is normal, of course, but in time, you will have confidence that things are going well.  If the tx team thought you were at high risk of any particular problem, I'm sure they'd tell you and would warn you against going back to Bournemouth.  The whole point of tx is to allow you to resume your normal life!  Enjoy it!  The worries will diminish.  I don't know if they every go away completely.  It's probably just as well if they don't because they remind you to take extra good care of yourself.

[MomoMcSleepy]

just read the other replies.  Your creatinine looks awesome (I know because of Richard's very informative post)!

Glad your dad is better, I would feel terribly guilty, too, even though they choose to do it knowing risks,etc., etc....

The best thing those in-laws can do is ignore you.  I got really lucky with mine, but have one who has very good intentions, but then sort of forgets we're alive.  We hardly ever hear from this person, who I believe has mental health issues and it is sad that they haven't been addressed.  There are people in my own family like this, but they are more distant relatives so it doesn't stick out so much.  Your in-laws are obviously self-absorbed and insensitive, and, you know, some personalities just never mesh well, either.  The mother is probably crazy, but she is still your husband's mother, and she must have some redeeming qualities if she made the man that you chose to share a life and children with.  So treat her with respect, and have no expectations, like she is a dumb beast that you feed at the zoo. Bears don't say thank you, and neither do some crazy people.  Just accept her nature, it will make your life easier.  You deserve respect, but she may be too dotty to give it, and two wrongs don't make a right.  You're a good person, so just hold your head high and don't expect her to ever change, cause she's too old now, anyway.  It's frustrating, but that's life.  She is your family, now though, and you'll always be connected.

I keep reaching out to this particular person in my life, and others, and if they go for it, great.  If not--whatever, dude.  I have friends, a nice little nest my hubs and I work hard to fix up, and a lovely husband.  I don't need to be besties with the whole planet.. Sorry you didn't make out better in the in-law pool, though. 

oh, but try not to disparage her aloud, she's you children's grandmother, your husband's mom, they're blood, and that may personally affect their sense of self if you tear her down or behave oddly when she's around or mentioned.  It's tough, but give it a good go, the. You can't say that you didn't try your best all the years she was here on Earth with you.

By all means vent here, though, and never share your username with anyone!

[lainiepop]

thanks both of you! I am trying not to Worry Its weird worrying more now than I did when i had creahnine OF 40O PLUS LOL,

Am not thinking bout MIL now, Looking forward to going home & having a nice Summer with my family. Hubby s a teacher so is off in 2 wks for 6 wks, good timing really!