is it all going wrong??

[lainiepop]

Hi all. well after leaving hospital on day 8 post transplant with a creatinine of 79 im now baack in wih a creatine of 103. cant stop crying and worrying bout dads kidney. they;re putting me on a drip overnight in case of dehydration  will do scan and bloods tomorrow and maybe a biopsy. im so stressed and worried my 4 yr old son is so upset im back in and my daughter turns 1 in 3 weeks i hate being away from them and feel this is the end already.

plus ive had row with hubby as his mum hasn;t contacted me once since ive had op or sent me and dad a card we;ve been married amost 7 yrs my mum is struggling with me dad and the kids and his parents dont offer any help im fed up with it 

xx

[Poppylicious]

Awww, lainiepop ... *huggles* ... I did wonder if your Fb status wasn't quite the true reflection of things.

You may find the drip sorts the creatinine out.  Blokey's creatinine took ages to go down and still fluctuates a lot even now.  I don't think it will ever be anywhere near 'normal'. Are you drinking enough?  Blokey was adamant that he was drinking enough in the first few weeks after transplant and I know that he wasn't; he was petrified of carrying fluid around and was convinced that he wasn't peeing.  It took a long time for him to sort his head out in relation to that.  *fingers crossed* everything will look rosy in the morning, poppet.

As for your MiL ... don't let her affect your recovery or your relationship.  This is a stressful time for the both of you as it is without letting her come between you.  Can hubby take any more time off work?  I know it's not convenient but I'm sure they'd give him another few days compassionate leave, especially as you're in hospital again.  Has he actually asked his parents if they could help?  (I only ask because you say they haven't offered, not that they've declined any requests for support/help.)

Chin up, duck.  This isn't the end, it's merely a teeny glitch and you'll be home again with your babies by the weekend, I'm positive.

*huggles* for all of you.

[lainiepop]

 i've just got in a State Cause they Can't get a drip in they were gonna give me 1 Litre on drip but have said its OK for me to just drink 2 Litres.

as for mil well I can't list all t he things She's said bout me & Kids Eg she bought hubby a new phone cause of my issues & is so proud of him for dealing with my Condition? ! P L.us when we said we'd have our daughter  early she told me I couldn't cos she might be mentally retarded So that's just  a snippet. Hubby won't ask cause he Knovs they'll say no. Iiont need this stress !!

[WishIKnew]

Oh Lainiepop, hang in there!  I was all gung ho about everything post transplant until I found myself readmitted for an infection.  That's when I lost it - I mean really lost it as in they called in psych services.  I was TERRIFIED that this new life I had let myself believe in was falling apart.  But, it wasn't and yours isn't either.  Those transplant team members don't make the big bucks for nothing, it is amazing what they can do.  And, they've seen it all.  What is new and worrisome to us is old hat to them.  Hang in there. They will sort this out for you.

Call in reinforcements, family, friends, church members, etc.  Tell people exactly what  they can do to help.  I found that a lot of people wanted to help but didn't know what we needed.  I asked one friend to be responsible for making sure my son got to and from school while I was in the hospital.  I had another who provided transportation for my mom to visit me (she is 72 and does not do city driving).  An old PTA buddy organized some meals - I'm babbling, but the point is when people say how can I help, have a list ready and be specific.  Wish I lived closer, a day with little people sounds like heaven to me!

I believe in you and your healthy future!  I also know from experience that bumps in the road to wellness ad normal.  Hang in there!

Diane

 

[Poppylicious]

as for mil well I can't list all t he things She's said bout me & Kids Eg she bought hubby a new phone cause of my issues & is so proud of him for dealing with my Condition? ! P L.us when we said we'd have our daughter  early she told me I couldn't cos she might be mentally retarded So that's just  a snippet. Hubby won't ask cause he Knovs they'll say no. Iiont need this stress !!

Oh, the MiL stories we could share ... !

This makes me think it's good that your dad donated instead of your husband ... I can truly imagine what your MiL would have been like in that scenario!  Yikes!

Drink up!

*huggles*

[okarol]

  If you have a couple of friends, ask them for help. Sometimes family just does not come through - sad to say - but it sounds like my family.
I hope the fluids make the difference - and be sure they check your immunos to be sure you are not experiencing toxicity.
Best of luck!

[jeannea]

Dehydration can change your creatinine. Or maybe if your Prograf level got too high. But the thing to remember is that your docs are good. They will help you. I recently went back to the hospital because of vomiting. My doctor got right on it, he was quite aggressive and got me all fixed up. They will figure it out.

As far as family, sometimes people are just mean. If you have any friends or family willing to help, just be direct. Tell them what specific tasks you need done and find out if they can help with those. Many people want to help but don't know what to do. It's not shameful to ask.

[jbeany]

lainie, hang in there.  I hit the Grand Canyon of bumps in the road after my transplant, and it all worked out fine in the end.   Just try to remain calm and stay away from baseball bats and your MIL at the same time. 

[Chris]

Sorry to hear about kidney issue, just consider it as a bump in the road that happens with having a transplant.

[lainiepop]

thanks every one. I have a temperature so they think I might have an infection. Having scan & bloods this morn & possible biopsy Later. So scared am gonna lose this kidney x

[MaryJoe]

Oh lanie, I'm so sorry you've hit this wall.  I know you're worried and scared and missing your kids,(not to mention feeling ill and having repeated attempts at having the IV started fail) not a combination that makes for happy thoughts!  I hope the fluids do the trick, and a biopsy is not necessary.  I'm keeping positive thoughts for the scan and blood tests.  Drink up, girl, dehydration can really mess with your body, including your temperature.  Meanwhile... try not to worry too much (yeah, right)

       

[lainiepop]

function hasn't improved but is stable so they think it prob is an infection not necessarily rejection. as long as it Stays at that Level am not too bothered iust Still worried it'll get worse. Supposed to be having a Scan today or tomorrow now, no biopsy for time being x

[KarenInWA]

function hasn't improved but is stable so they think it prob is an infection not necessarily rejection. as long as it Stays at that Level am not too bothered iust Still worried it'll get worse. Supposed to be having a Scan today or tomorrow now, no biopsy for time being x

Good news on no biopsy for now! I also have an older kidney tx, and my creatinine, after a few months, went from 1.4 to 1.7. Now, this most likely happened due to raising prograf from 2mg twice a day to 4mg twice a day. I was on clotrimazole for 3 months, to prevent thrush, and while on that, that raised prograf levels, so only a lower dose was needed. The increase was most likely due to the increase in prograf. The dr decided to do a biopsy to rule out rejection, even tho I am at low risk for it. I wish I had spoken up and said NO!!! The biopsy was uneventful. No blood in the urine, until a couple of days later, and that was only for a couple of times.  I had the biopsy on a Tuesday. Fast fwd to Saturday, and I woke up and couldn't pee! It was like I was back on dialysis! I ended up going to the ER, a large hematoma was discovered, and I had to have emergency surgery to remove it. I had acute kidney failure due to kidney injury. Creatinine went as high as 9.9!!! It is now taking its time to come back down. Last reading was just over 4. Normal range for us in the US is 0.4 to 1.2. I think 9.9 in your numbers is something over 1000, maybe 1100 or higher.

Just please, be careful of biopsy. What happened to me is rare, and I was warned, but I thought I would be fine. Boy, did I learn otherwise!

KarenInWA

[MomoMcSleepy]

Oh, Lanie, I would be really scared, too., but remember that post-op infections are common, and also, it will take time to get your meds right,  etc.  Your doctors didn't spend all that time testing you and doing those surgeries just to let you lose your kidney.  They are going to do everything possible to get you ship-shape ASAP. 

as for your MIL, your husband's behavior with housework makes so much sense now.  She's obviously a little socially n
backwards, some people are like that.  If they help, great, if not, well, they weren't helping before, so no loss, right?  The others are right, you should ask friends for help, and be specific about the help you need.  Many times people want to help, but are uncomfortable being demonstrative and direct about the offer. They often think that if they haven't been asked to help, then they are not needed.  Plus, though friends and family care, they also get swallowed up in their own lives, or sometimes overwhelmed.. So anyway, be very specific asking for help.  If you belong to a church, they are great.  A friend at my church put my on the prayer list this Easter (I was surprised and blushed when I heard my name...sheesh) and the pastoral minister called me at home later in the week to see if I needed anything specific.  She said to please call if I ever needed help, because they have raised money for people, found bone marrow donors, make meals, and even send volunteers to help with housework.  I myself have prepared food for homebound/reciprocating parishioners, so I know what we offer.  It's a great resource.

Good luck, sweetie, keep your chin up!  Mwa!
 

[Poppylicious]

Don't forget, Blokey's creatinine got all the way up to 1000 a few weeks ago ... it managed to bump back down again quite well despite them being convinced it was going to be a major episode of rejection (and although there were no signs of rejection they still have no idea what caused it)!  I'm pleased it's stable at the moment ... hopefully it's going down now and you can start relaxing.  *huggles*

[lainiepop]

Hi, better news today, scan shows Kidney all fine & creatinine improved from 105 to 92 so they think it was down to infection. Just praying it stays this  way. Still Waiting to see Urologist about taking stent & catheters out X x

[natnnnat]

Hi Lainie, just found this thread, hoping you are doing okay.  I'm glad to see this good news you just posted.   

[lainiepop]

Latest - have a blood & Urine infection so feel tired but antibiotics are working Creatinine down to 80  & function 70% So hopefully was just infection & all will be OK! Am shattered from stress! going home tonight x

[billybags]

Hope  things are really on the mend now. I know you will be looking forward to going home. Make sure you do not do too much, take it easy you have been through enough.

[MaryJoe]

   I'm so glad it wasn't something more serious, and that you get to go home today!

[jbeany]

 

[WishIKnew]

So glad you're going home!  Give yourself time for your head to catch up with your body.  It is SOOO hard to trust that these transplant miracles will last.  Let's decide together to trust anyway!  Thinking of you and your family.

Diane

 

[Chris]

Glad the doctors know what it is and that your going home. I bet your going to miss that hospital food!

[mk]

I'm relieved for you that you're headed home. I went through a similar episode and felt that same fear of the miracle ending. It didn't and it won't for you. Give yourself time to heal and adjust - it's a new life with this new kidney - and it gets so much better. Ask friends to help with specific things while you get stronger after the surgery and the infection. They want to, they don't know how.
As for your MiL, in comment to friends testing to donate, my MiL said, "why would anyone do that?"; and then when she learned it was her son (my hero) who was going to donate, she said " oh no, will you be alright, you shouldn't" to him. at no point in time did it occur to her that I might actually have a real health problem and living on dialysis wasn't alright! With the occasional rant, I ignored her ignorance. Do that too!
and hug those kids! Hugs to you.

[lainiepop]

thanks so much everyone. So glad to be home with Kids  & nice food. Feel quite Weak still after I go out for a bit so gonna chill tomorrow. Guess my body's been through more than most in the Last 18tnths - pregnanc y, c secti on, ESR F then transplant!

Don't know if I said but I never had a drip in the end I just dranK loL!

Am back to hospital next Week for a day OP to remove a stent they put in while Kidneys healing, glad I'll be asleep, this Is cause of my weird bladder structure. mum's shattered Looking after me dad & 2 Kids! I'm constantLy Stressed & anxious wan t to be normal again but Looking forward to Elena's lst birthday on lst July then our 7th weddirg anniversary the day after. Hoping to get back to our home town for Andrew's 1ast week at pre School, he Starts School September, but not holding my breath!

Si denote - is there enough of us to start an off topic thread about MILS?? who's with me?!

thanks for all your suppor t, much appreciated at this emotional time

marie x