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Author Topic: 9 days to go.....any advice??  (Read 417 times)
gilders
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« on: March 10, 2019, 08:29:16 AM »

I have my transplant on March 19th 2019.
For those of you that have had a transplant or know someone that has, is there anything I should do to plan for immediately afterwards. For example, I've bought some soft extra large boxer shorts, thinking that it might be more comfortable with the catheter in place?

They have decided to do the operation slightly different with me. Whereas usually the donor goes to theatre first and the receiver goes down after the kidney has been removed, both me and my dad (the donor) will go down together. They will begin to operate on us both at the same time and will not clamp off my dad's kidney until they are reassured that my bleeding isn't too severe.
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cassandra
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« Reply #1 on: March 10, 2019, 09:33:17 AM »

Wow, congratulations!!!


Things have changed a lot since my transplant from my dad's kidney. In those days ('85) you would not be going home with a cath. I went in at the same time as my dad too. Just wanted to wish you, and your dad lots of luck.


I'm sure hints and tips will follow soon.


Lots of 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
Cupcake
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« Reply #2 on: March 10, 2019, 12:46:01 PM »

Congrats! My transplant was in October 2018. Yes, thinking ahead for loose fitting underpants is a great idea. I lived in a loose house dress for the first couple of weeks; only put on pants to go get blood drawn, see the dr, etc. TMI!!

The foley was 80 percent of my post op aggravation. Wish I could tell you it wasn't. I got mine out on day 3 post op. The ureteral stent at about a month. You will also likely have a wound drain, but it was lighter and came thru the abdominal wall so wasn't so tricky to maneuver. That came out about 2 weeks.

Best of luck. Keep us posted.
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MooseMom
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« Reply #3 on: March 10, 2019, 12:47:05 PM »

I didn't have a cath in when I was discharged.  Is that what you've been told will happen?  Is that the norm because I've not heard of this before.

You are fortunate that you have the time and opportunity to plan for "the aftermath".  I found that the most important thing was food!  Maybe you can have some meals in the freezer or have a friend willing to make something for you that he/she can pop around with once you get home.

Having a nice big calendar might be helpful so that you can keep a schedule of your meds and appointments.  There's so much information to take in at first.  Soon enough, your meds schedule will just become second nature, but in the early days, things might feel overwhelming.

Other than those things, I really didn't prepare that much.  I was sent home with everything I needed, even a medication holder.

Good luck to you!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MooseMom
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« Reply #4 on: March 10, 2019, 12:49:37 PM »



The foley was 80 percent of my post op aggravation. Wish I could tell you it wasn't. I got mine out on day 3 post op. The ureteral stent at about a month. You will also likely have a wound drain, but it was lighter and came thru the abdominal wall so wasn't so tricky to maneuver. That came out about 2 weeks.


Why were you released with the foley?  Again, is this normal practice?

And, what is a wound drain?  Why did you need that?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #5 on: March 10, 2019, 01:12:20 PM »

No advice, but congratulations. Good luck to you and your dad, I will be thinking of you.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
UkrainianTracksuit
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« Reply #6 on: March 10, 2019, 02:44:46 PM »

Hey, congratulations! Right now, just try to breathe and be at ease, as possibly as you can. You have one of the more unique cases with your condition so here are all the best wishes in the world that all goes smoothly! For you and your dad!  :grouphug;

Thinking ahead and getting some extra large and soft boxer shorts is a good idea! Anything with a loose (but still stays on!) waistband is the way to go. Will they let you wear shorts with the foley? I had to go commando and stay in a hospital gown although I packed a bunch of pj's. Besides that TMI, for the next couple of weeks or so, have track or jogging suits readily available for appointments. Pretty much, you just want to be comfortable!

A checklist for your medication is a good idea in the early days. My center sent me home with a few pages of them and when I ran out, I made a bunch just to make sure I remembered to take everything.

MooseMom is smart in regard to a big calendar. There are many appointments, and sometimes with different specialists, or procedures, that need to be noted.

I don't know how long your hospital stay will be but mine was in the two weeks range. Pack some things that you can easily keep yourself entertained and without too much hassle.

And, what is a wound drain?  Why did you need that?
You ever see those vacuum canisters with plastic tubing coming out of a person post-surgery or sometimes with ascites? Fluid from the wound or body collects in the canister. That sort of thing.

I had like, 4 of them. But that was because I had two new organs. The pancreas one was important because they would take samples from the canister and send it off for testing for amylase. I went home with, I think 3, because they pulled one the day before discharge. After a clinic visit, I had one "re-installed" because it needed to suck out some gnarly infection. It is quite common to go home with drains: the post-tx lab had so many sitting with one. But I had numerous... so it was extra heavy.
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MooseMom
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« Reply #7 on: March 10, 2019, 04:15:51 PM »

UT, no, I've never seen the vacuum canister thingeys!  LOL!  I had just a regular kidney transplant and didn't have the second organ tx like you did.  After reading your description, I can certainly understand how it would make testing easier, and I can also see how it would be a nifty way to suck out gnarly infection.  Ewww.  lol
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Cupcake
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« Reply #8 on: March 10, 2019, 05:28:39 PM »

My foley came out day 3; discharge was contingent on voiding post removal--I was putting out liters of urine a day right after surgery and first time I went after they took out the foley I filled the plastic toilet hat. HA! showed them I was ready to go. I felt smart as they had told me 5 days was average stay-maybe they overstate it so you'll be happy to leave 'early'

I had just one drain, the lemon sized squeeze ball thing Ukrainian Tracksuit described. Guess I thought that was standard. Had a safety pin on it so I just pinned it to the inside of my dress when home; stuffed into my waistband when out and about.I had to empty/measure the drain and it could come out when output was down to 50ml per day.

Another thing, I used an App on my phone to record my vitals-they wanted daily weights, BP and temp.

I stocked uo paper towels, toilet paper, laundry soap, all the heavy/grocery type items before surgery as they said no lifting more than 10 lbs for a couple of months.I had a lot of homemade soups in the freezer that I ate up after I got home, and used the marvelous services of grub hub and door dash. My sister stayed for 10 days; was helpful for laundry, etc but she really wasn't required to be there. I was glad for the peace and quiet once she left.
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UkrainianTracksuit
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« Reply #9 on: March 10, 2019, 05:55:39 PM »

I had the Hemovac drains that hold 500 ml. The first couple days after surgery, they were drained every few hours. For some reason, I put out a lot of ooze and now I have something to ponder over. Why so much ooze?!

For the rest of the stay, the nurses drained them twice a day. I guess the policy was that it happened at shift changes.

After discharge, they sent home care (I was in a hotel, so technically, hotel care, LOL) and they drained the drains once a day. Main job was wound care / bandage change though, as well as vitals. Again, not sure why I am so oozey because when three or four drains have around 50 ml, it got heavy and ached.

Mine werenít removed until they were only putting out below 10 ml. For the infection one, that one came out once the colour shifted from vomit green and garage water to clear.

Like Cupcake, I used safety pins. I attached them to my waistband (wore track suits... haha, my name is apropos). I will admit I got strange looks in the mall but ehhhhh....
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iolaire
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« Reply #10 on: March 10, 2019, 07:06:07 PM »

The advice to get loose pants for when you head home is good. I basically wore the gown for the week I was in the hospital with the catheter coming out in a few days. I donít think I showered until day six or so. My looser jeans were to tight to wear when sitting down after I went home so I had to leave them open when driving back to the clinic for the first two or three weeks. 

I was not clear headed or motivated enough to want to use my phone for first four or so days.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
LorinnPKD
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« Reply #11 on: March 10, 2019, 11:45:10 PM »

I was told that when the time comes, I should bring a pillow for the eventual car rides!  Apparently you're supposed to gently hold it to your incision to keep the bumps in the road from feeling quite so jarring.
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UkrainianTracksuit
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« Reply #12 on: March 11, 2019, 06:13:04 AM »

I was told that when the time comes, I should bring a pillow for the eventual car rides!  Apparently you're supposed to gently hold it to your incision to keep the bumps in the road from feeling quite so jarring.
That's..... actually a really good idea!  :thumbup;

I remember the first ride in the taxi after discharge and the bumps HURT! The pillows were always handy when I had to sneeze or cough. Holding it over the incision soothed the force, somewhat.
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gilders
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« Reply #13 on: March 11, 2019, 08:25:45 AM »

Thanks for all the advice.
I'm not sure why Cassandra thought I'd be leaving hospital with catheter still in place, this is not the plan.
I have been told the following -
Monday - Final coagulation blood tests and admittance to Renal ward
Tuesday - Me and my dad will walk from the kidney ward to the double theatre in the hospital's neighbouring wing early in the morning
               I will be given extra platelets.
               Transplant will take place.
               I will definitely have a catheter. I will have 1-2 drains. I will have extra large cannula (to accompany the regular cannula already in place) for fluids, unless my veins aren't good and then they will give me a line in my neck.
               My dad will be taken back to renal ward and I'll be taken to High Dependency ward.
               I'll have self administerable morphine until at least the night of the transplant.
Wednesday - I may be taken back to Renal ward if observations are good.
                   My dad will be discharged in the evening if everything is good with him.
Thursday - Saturday - nothing in particular these days.
Sunday  -  Catheter will be removed. There is a slight chance of being discharged today if things are exceptionally good.
Monday -   Some chance of being discharged
Tuesday -  Likely to be discharged today if things have gone as expected.

I do not know when the drainage line/s are due to be removed (strongly expect before discharge) and ready other people's experiences has left me none the wiser as it seems to vary so much.

I am lucky that I have wife and other family members helping out so don't have to worry about shopping, walking dog, cooking etc. In fact I usually do the cooking so it will be nice to have a break. Although I could make some freezable meals before hand so I don't feel like a big burden for the first week or so I'm back home.

Thanks for the advice about using a cushion on car journeys, coughing and sneezing. That's the sor of advice I'm looking for - little things that you don't think of.
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Simon Dog
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« Reply #14 on: March 11, 2019, 05:48:44 PM »

In Friday night for a midnight transplant; out Tuesday AM.  Wore sweat pants home, no pillow, no real pain.  Foley made it feel like I really had to pee - requirement was it had to remain 72 hours to give ureter/bladder incision a chance to start healing.  Miserable feeling from the constant need to pee sensation; incisional pain was not even in the same league.   Took a total of 10mg Oxy while inpatient; did not get Rx filled after discharge.

Sent my wife to Florida 5 or so days after getting home, walked the dog and picked up his shit with the incision in place.

Drain kept producing 4ever; eventually, they gave 25% betadine to inject in the line to seal it off.  Drain removed about 3 weeks post surgery.  Not painful but annoying.

6.08 months post xplant; all is well; have a really cool scar.  Is it true chicks dig scars?  If so, I just went up about 2 points on the 1-10 scale.

Offered PCA (patient controlled dilaudid), but an RN countermanded the surgeon's order (got a resident to rubber stamp her call).  A different resident rewrote the order.  RN had that cancelled as well because I told her I did not need it.  Surgeon told me nobody but nobody overrides him and if I want a PCA and am refused to have him paged.  Went home with surgeon's personal direct cell #.
« Last Edit: March 11, 2019, 06:13:37 PM by Simon Dog » Logged
Rerun
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Going through life tied to a chair!

« Reply #15 on: March 11, 2019, 07:38:00 PM »

Enjoy Life!!   :guitar:
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