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Author Topic: In Stage 4 and starting Epo shots tomorrow...  (Read 4170 times)
KarenInWA
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« on: March 18, 2010, 08:12:56 PM »

Helllo everyone,

I saw my neph today.  My HGB was 9.6 and my hematocrit was 29.3 on a blood draw done last Friday.  And no, it was not due to my period, either.  I remember going home after doing that blood draw, and ended up taking a 2 hour nap on the couch for an exciting Friday night.  Now that all makes sense....

Anyway, what can you tell me about this?  I am a little nervous about it, but am hoping for the best.  My GFR went up from 25 to 27, but my creatinine remains steady at 2.2.  My other labs are within the normal range, except for the usual BUN, albumin, etc, yadda.  I've been especially tired this week, but doing the whole Daylight time change *and* having to work OT at work hasn't helped, either!

Tomorow (Friday) at 5:30pm I go to my local hospital and check in as an outpatient.  Go to the lab, then on up to the 8th floor for my first sub-cutaneous shot.  How's that for a Happy Hour?  :rofl;

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!
-Lady Noir-
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Where's your will to be weird?

« Reply #1 on: March 18, 2010, 09:03:41 PM »

Oooh, how many times a week will you have to do the shots?
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
okarol
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« Reply #2 on: March 18, 2010, 10:21:37 PM »


Jenna does the shots in her thigh here at home, started 2 weeks ago and her RBC is slowly improving. She has 2 weeks more of shots.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
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galvo
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« Reply #3 on: March 18, 2010, 10:22:40 PM »

I get my EPO with dialysis each Saturday. Makes my weekend.
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Galvo
-Lady Noir-
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Where's your will to be weird?

« Reply #4 on: March 18, 2010, 11:27:08 PM »

Mikes on these shots over here called neorecormon, which he has 1x a week. The bloods show it works but he feels no different. No suprises there though, even diaylsis makes him feel the same as he did before  ::)
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
KarenInWA
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« Reply #5 on: March 19, 2010, 04:11:01 AM »

I will be having my shots once every other week until my levels stabilize.  I wish I could do them at home, but for some reason they're making me go to the local hospital as an out patient.  I gues that's good for the first few times, but what about after that?
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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!
monrein
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Might as well smile

« Reply #6 on: March 19, 2010, 04:33:02 AM »

I used to use Aranesp (synthetic epo) and gave myself the shots at home, subcutaneously into my belly fat or thigh.  On D I had them into my lines, but I have read that actual EPO is better absorbed and we don't need to use as much if it's given subQ rather than into the machine.  I asked my neph about this and that was the info I was given also.  It's a pretty easy thing to give oneself since the needle is tiny.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Darthvadar
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« Reply #7 on: March 19, 2010, 05:52:39 AM »

Mum's on Arenesp...

She needs one 10mg shot every two weeks...

The hospital wanted to arrange for the Community Nurse to call and administer them.... No chance!..... Wasting a nurse's time that another patient could need...

I spoke to a Junior doc, asked her to show me how it's done, and I do it every two weeks... As Monrein said, the needles are TINY!.... Mum's too chicken to do it, but I'd suggest you put it to the hosp. that you want to do them yourself.... Saves you going to a hosp. every couple of weeks...

Good luck with it!....

Darth....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
looneytunes
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Wishin' I was Fishin'

« Reply #8 on: March 19, 2010, 06:48:56 AM »

Karen..hubby was taking Epo in various amounts while he was on PD by injecting himself at home with a tiny little needle.  His amounts were from 5600 units up to 10,000.  After he returned to clinical hemo, he is getting 15,000 units each time he hooks up through the lines.  We also were told that Epo is more effective when given by injection.  Best of luck to you on this but Happy Hour can be saved if you learn to do it yourself!   :beer1;
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MooseMom
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« Reply #9 on: March 19, 2010, 09:21:48 AM »

I had to take epo shots for a couple of months in 2008 because I had "women's troubles" and was becoming anemic.  A hysterectomy cured that, but until surgery, I took the shots.  At that particular moment in time, I just could not fit one more thing into my brain, and I really didn't think I'd be able to handle learning how to inject myself.  I told my neph's nurse that I'd learn to do it after the surgery, but not before.  She took pity upon me and just told me to pop around every other thursday and she'd inject me.

It's important to treat anemia in a CKD patient because untreated, anemia contributes to LVH.  Sometimes Stage 4 patients are overlooked, so it is good that your neph is looking out for you.  Anything that you can do to keep you healthy is worth doing. 
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Sunny
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Sunny

« Reply #10 on: March 19, 2010, 02:41:19 PM »

I'm stage 4 and just started EPO last month. My doctor trained my husband and me how to administer it and it's very easy. Maybe if you are going to need it for prolonged periods, you can ask your doctor or a nurse to train you. The needles are very short and only require injection in to fat, which makes it much easier. Plus, I always take mine out of the frig and get it to room temp before injection.It would save you a trip to the hospital, where germs abound anyway. I hope you see good results soon.
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Sunny, 49 year old female
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RichardMEL
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« Reply #11 on: March 20, 2010, 03:16:34 AM »

Karen why don't you ask them to show you how to give it to yourself? You're a capable young lady - unless you're a wimp like me and don't want to do it to yourself - I see no reason why you couldn't do it at home and not waste your time and the hospital's time to give you a shot that takes a few seconds.

Anyhoo I hope the first one was fine !!! :)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Meinuk
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« Reply #12 on: March 20, 2010, 06:03:16 AM »

I don't understand why they are bringing you in.  EPO can be easily administered with an insulin needle at home.

One thing about EPO though.  Make sure that your Iron is being monitored.  If you have EPO without having sufficient Iron, it will just wipe out your Iron stores, and you'll feel worse.  This is a big scandal in the dialysis industry. I took Chromagen Forte to supplement my Iron when I was pre dialysis, and I hated it.

This is from 2006 and for people on dialysis, so please check with your medical team for the current protocol, but this is what I was told in Feb 07/ when I was in my first month of dialysis:

   
Quote
The clinical target for treatment of anemia in this population, per the KDOQI 2000 recommendations, was a hemoglobin level of 11- 12 mg/dL. To reach this hemoglobin level, patients need to have their iron stores replenished with intravenous iron, and they also need to receive EPO, which stimulates red blood cell production and thereby works to correct the anemia. The recommended target for iron stores was a serum ferritin level of at least 100ng/mL.

   The guideline called for an initial EPO dose of 120-180 units per kg per week, which we assume remained the dose during the study period. We calculated
the recommended dosage of EPO based on a 72.5 kg adult, which is the average weight of hemodialysis patients reported by USRDS. For iron, the recommended dose for adults was 100-125mg of intravenously at every hemodialysis session for 8-10 doses followed by a maintenance dose of 25-125mg per week upon reaching the target ferritin level.

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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
RichardMEL
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« Reply #13 on: March 20, 2010, 06:21:47 AM »

Good point about the Iron.

We have IV Iron every month which handles all that, and they do ferratin studies 3 monthly so I think we're being looked after :)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
lola
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I can fly!!!

« Reply #14 on: March 20, 2010, 06:29:59 AM »

Otto gets his epo here at home and feels much better now that his HGB is higher.
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Yvonne
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Yvonne

« Reply #15 on: March 20, 2010, 08:13:25 AM »

John has been on EPO injections now for about 2 years.  At first when he was very ill when he first came out of hospital the District nurse use to come in and inject John. Then they asked me if I could do it and said I could not so then John decided to do it for himself, a little needle goes into his tummy every Monday morning.  He dose not think twice about it anymore, he is still gets very tired so it didn't stop that.
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2007- since January 2007 carer to my husband John who has the following, allways been a very fit man up till then.
2007 - January Renal failure
2007 - March Diagnosed with a Horseshoe kidney and bladder cancer.
2007 - June One kidney, Prostrate and Bladder removed with stage 4 cancer. Urostomy
paris
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« Reply #16 on: March 20, 2010, 09:02:16 AM »

I don't know why they are making you go to the hospital for the shots.  Many do them at home. I get mine at my neph's office--his nurse does it.  I could do it, but I live 3 minutes from his office, so I just stop by.   It seems to add to the cost of everything by making you go to the hospital as an outpatient.  It is a simple shot.    Let us know how it goes.  I hope you feel better as your level increases.
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jbeany
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« Reply #17 on: March 20, 2010, 02:12:25 PM »

I was on epo for a decade before I started D.  I started on Procrit, which I did once a month, since it wiped me out for the whole next day when I took it.  I was switched to Aranesp, which didn't have such rough side effects.  It only made me sleepier and gave me muscle aches for the day I took it, so I took that every two weeks to keep my hemoglobin on a more even keel.  I did the shots at home, too.

It takes about two weeks for the first dose to really kick in.  After that, you should have more energy.  Eat some spinach, too!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

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