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Author Topic: Dazed and confused  (Read 7223 times)
Michelle2016
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« Reply #100 on: May 13, 2017, 06:21:40 PM »

Right after the local anesthesis in the kidney area,  it takes about 15 to 30 min for a radiologist to do the biopsy with the help of ultrasound device.
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Simon Dog
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« Reply #101 on: May 13, 2017, 07:08:00 PM »

Right after the local anesthesis in the kidney area,  it takes about 15 to 30 min for a radiologist to do the biopsy with the help of ultrasound device.
Mine was done by the neph, not a radiologist, with cat scan.  Wish it was ultrasound (radiation)

I felt the needle when it pierced the capsule enclosing the kidney.  My neph told me this was normal since the capsule is innervated but the kidney is not.  I don't know if you still have the enclosing capsule after a transplant.   I was kept in the hospital overnight to watch for bleeding (standard procedure for this doc).  All in all not a bad experience.    Had bright red blood in the urine a couple of days later - told this was a normal side effect and not to worry.
« Last Edit: May 13, 2017, 10:46:58 PM by Simon Dog » Logged
kickingandscreaming
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« Reply #102 on: May 13, 2017, 07:40:17 PM »

I empathize with your worry, and I hope it's a nothing burger and that you and your husband have a great trip. 
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
KarenInWA
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« Reply #103 on: May 13, 2017, 08:18:21 PM »

I will be thinking of you, MooseMom. The best advice I can give is to ask your dr to walk you through what he/she is doing, and ask that they count down before the big click. You already know my story, so I won't go into the details. Just remember - my experience was rare!

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
cassandra
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When all else fails run in circles, shout loudly

« Reply #104 on: May 14, 2017, 12:23:07 AM »

Dear MM after I had it done on dad's kidney, it turned out to be toxicity to Tacro. So change meds. The procedure was okay, like SD and Michelle wrote.
Seriously, no joking here, concentrate on setting it out of your mind!
Go in your head, put all your worries in a small box, close it by stamping on it and throw it in a corner.
Don't waste time on worry cos it won't change nothing at all.

Really enjoy that trip to Disneyland with your husband.         :cuddle;


At the minute I'm in P'gal, pretending very hard that everything is fine.

My new mantra: Fake it till you make it.  :angel;

Love, luck and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #105 on: May 14, 2017, 04:17:08 AM »


Anxiety, letting the little things bug us so much it becomes it's own problem.

Talk to your Dr about it.  Many people have problems with anxiety, unable to shrug off the fears.  Some turn to alcohol, or street drugs, to soften their senses. Medical Pot is the right strain can help for some.  The Dr has a whole list of anti-anxiety meds.  You may have to try and see what works best for you.

Brothers ex-Mother-in-Law has a couple of cupboard cabinets full of various 'Tea(s).  She is a true believer in the healing effect tea can have.  I suspect she is correct.

It all keeps coming back to that very old thing,  All things in moderation.

Every plant is here for a reason.  For us to use.  We have simply forgotten what each is to be used for.
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Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #106 on: May 14, 2017, 05:34:40 AM »

MM...worrying is not good for you  :)

Listen to what your body is telling you...and relax.

 Rejoice and Enjoy the gift you have been given every day. You are...doing great.

Weeeeelllllll...not so fast, there.

So, I went for my annual appointment.  And, uh, they want me to have a biopsy.


All in all, my doc is optimistic (well, she claims to be), but I'm still dazed and confused.


Holly used to have heart caths and biopsies every year. She ended up having side effects from the contrasts (dyes) that they used in the procedures. When Holly got to Mayo they said no more-unless necessary! As far as her kidney...we just had the standard protocol 4 month biopsy and everything is fine. I believe that we have another at 8 months-then one at 2/12 years. Not sure after that, but I think it may be 5 years....or if medically necessary.

I know it may be hard for you, but the worrying part is NOT good for you or your body-it will do nothing but harm-and won't change the outcome.

Celebrate your life-and have a GREAT time at the happiest place on Earth. (As a side note-as a kid I used to lay in my bed and watch the Disneyland fireworks go off :)
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My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
SooMK
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« Reply #107 on: May 14, 2017, 05:48:30 AM »

Most of us here are pretty experienced wait-ers but it never seems to get easier. Hopefully your trip will be a good distraction. Have a great time. I hope this all turns out to be just a small blip. I'll be thinking of you and sending you positive thoughts.
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
MooseMom
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« Reply #108 on: May 14, 2017, 07:53:14 AM »

Had bright red blood in the urine a couple of days later - told this was a normal side effect and not to worry.

Gosh, really?  I was told that this would be reason to call the hospital (according to the patient instructions I was able to find on UW-Madison's website for kidney transplant patients)!  I'll ask more about this after the biopsy is done and before I leave the hospital.  Thanks for the heads up.

Anyway, thank you all for your kind comments.  I appreciate it.  No one gets through ESRD without some frightening times and long waits.  I don't really know enough about rejection in its different forms.  One thing I was told that took me aback is that if I needed high-dose steroid treatment, I'd have to sort of go back to square one and go through the usual post tx protocol like the anti-fungal mouth wash, etc.  But I'm getting ahead of myself.

Cass, I suppose it could be drug toxicity; that certainly entered my mind. 

Charlie, I do have Xanax for use "when needed", and I think that will be sufficient for now.  I think I was just in shock, and today I feel better, thanks to the wisdom of my fellow IHDers!  And I do love tea and have many varieties at hand, so I will take your advice and have a nice cuppa a bit more often.

Again, thanks to you all, and if anyone else has experience with biopsies, results and treatment you have undergone, I'd appreciate it if you could tell me more about it.
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"Empathy is the soul of democracy."  Jeremy Rifkin
kristina
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« Reply #109 on: May 14, 2017, 12:01:31 PM »

Hello MooseMom, just to tell you that I think of you and ... I only ever had one kidney-biopsy in 1972 which took place to confirm the diagnosis of Chronic Proliferative Glomerulonephritis. After the biopsy I had to lie still in my hospital-bed for over 24 hours, to let my body and the kidney recover from the biopsy .
I wish you the best of luck and ... I think of you and ... please take great care,
Kristina. :cuddle;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
tigtink
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« Reply #110 on: May 14, 2017, 12:35:19 PM »

I'm sorry you are going through this MooseMom. I'm hoping the biopsy goes well and provides the answer. You have done so well and hopefully it is only an issue with the medication that can easily be remedied. The anxiety is something we all struggle with and it never gets easy. Try and set it aside and enjoy your trip. You will be in my thoughts.
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Simon Dog
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« Reply #111 on: May 14, 2017, 02:26:06 PM »

Quote
Gosh, really?  I was told that this would be reason to call the hospital (according to the patient instructions I was able to find on UW-Madison's website for kidney transplant patients)!
My doc warned me this might happen after the biopsy (oem, not transplant).   I called him when it happened and he told me not to worry and call him if it happened again.
Quote
needed high-dose steroid treatment
It is not unheard of for xplant recipients to need hip replacements due to steroid induced avascular necrosis.  Been there, done that (prednisone was for something else, I have not had any xplants).
« Last Edit: May 14, 2017, 02:27:50 PM by Simon Dog » Logged
lainiepop
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« Reply #112 on: May 16, 2017, 12:49:15 PM »

Well moosemom i really hope the biopsy gives u some positive answers please let us know how the procedure went and tue outcome when u have had it. I am thinking of you.

I am trying not to worry we r going away in a xouple weeks to malta for a few days with my parents. We have a 12 day trip to italy booked in the summer and are waiting to book flights for our big to to usa and west coadt vegas grand canyon tour. After last results i did have a cry and worry that this will never happen now but tbh since then been so busy with kids and life (currently wondering how to make medal test costumes for 5 yr olds dancing lol)

So please have a fab time at disney is it california? R u doing harry potter too?xxx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
MooseMom
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« Reply #113 on: May 16, 2017, 01:02:11 PM »

SimonDog, I do remember you discussing avascular necrosis, and I remember the unpleasant stories. 

lainiepop, I've not been to Malta, so when you've returned, you must tell me about your trip.  I hope you have fun.  It sounds like you have a year of fun travelling ahead of you!  And with kids and their projects to keep you busy, there's no time to worry, which is as it should be.

It will be Disneyland in CA.  I have been there only once, back when I was around 15 (only a few years ago, haha).  I've been to the one in Florida (and even the one in Paris) several times and enjoyed them, but I have relatives in San Diego that we will be visiting, so Disneyland in CA it is!
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"Empathy is the soul of democracy."  Jeremy Rifkin
lainiepop
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« Reply #114 on: May 17, 2017, 06:31:40 AM »

Well o just got a follow up letter from my consultant just outlining what he said that if if still creeping next time take me off tacro but there is a misprint on the letter instead of saying creatinine 97 it says 297  :o talk about the wrong place to misprint getting me stressed now!!
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
cassandra
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When all else fails run in circles, shout loudly

« Reply #115 on: May 17, 2017, 08:02:20 AM »

.........  is a misprint on the letter instead of saying creatinine 97 it says 297  :o talk about the wrong place to misprint getting me stressed now!!


Seriously
 

     :Kit n Stik;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
MooseMom
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« Reply #116 on: May 17, 2017, 12:30:14 PM »

Oh Cass, you must have stopped breathing when you saw that number in black and white!
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"Empathy is the soul of democracy."  Jeremy Rifkin
Charlie B53
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« Reply #117 on: May 18, 2017, 03:28:54 AM »


I guess I have a lot more to Google and learn as I am still so new to all this that there are a lot of Labs that I don't understand yet, much less know what range is  good, bad, or  indifferent.

I rely a lot on that third column that shows the normal accepted 'Range' of values.  As long as my numbers are well within those ranges I don't get the least excited.

So far, I've been Blessed.  Well, except for that pTh thing.  But we are working on that.  Worse case the parathyroids come out.  Oh, Well.  It won't kill me today, so nothing to worry about.
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MooseMom
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« Reply #118 on: May 19, 2017, 08:16:31 AM »


I rely a lot on that third column that shows the normal accepted 'Range' of values.  As long as my numbers are well within those ranges I don't get the least excited.

So far, I've been Blessed.  Well, except for that pTh thing.  But we are working on that.  Worse case the parathyroids come out.  Oh, Well.  It won't kill me today, so nothing to worry about.

 :2thumbsup;
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"Empathy is the soul of democracy."  Jeremy Rifkin
lainiepop
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« Reply #119 on: June 26, 2017, 06:57:49 AM »

How are u doing moosemom? Anytging to report? Well i am feel nervous and stressed as the time has come i had bloods drawn last week and see consultant tomorrow morning for results. Am more apprehensive than i ever was when i knew things were awful! Xxx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
kristina
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« Reply #120 on: June 26, 2017, 09:11:43 AM »

Hello MooseMom, just a quick note to tell you that I think of you and hope you are doing well?
Best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
KarenInWA
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« Reply #121 on: June 26, 2017, 10:40:13 AM »

I have a weird one. I am 5.5 years post-tx. Earlier this year I had pneumonia - thankfully not bad enough to require hospitalization. Now first of all I should note that my creatinine is quite high due to a biopsy injury I suffered over 5 years ago. It settled in the low 3's, w/a GFR of 15-19. The 19 happened while I had pneumonia - a low of 2.4! It was then 2.7 for a while, and has now settled back around 3.2. I saw my tx dr earlier this month, and we repeated labs last Thursday, and will again in another 2 weeks. I feel fine, in fact, I feel better than I have in a while. I do appreciate that my tx dr is on the ball with watching everything, but both he and I are stumped that my kidney apparently likes it when I have pneumonia. Go figure! Maybe it's due to my not eating much when I was sick?

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
PrimeTimer
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« Reply #122 on: June 27, 2017, 09:33:11 PM »

Moosemom, Hope your vacay went well and afforded you some peace and a little fun outside the world of worrying. Surely it will all turn out alright and you'll get to enjoy the rest of summer!   ;)
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
kristina
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« Reply #123 on: July 02, 2017, 10:42:50 AM »

Dear Moosemom,
I wish you a great holiday and send you my best wishes and hope to "see you" soon again here.
Kind regards from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
SooMK
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« Reply #124 on: July 07, 2017, 10:18:40 AM »

Hey Moosemom, Hope you are ok and hoping to hear an update from you soon.
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
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