I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: lainiepop on May 26, 2012, 01:40:25 PM

Title: A couple of Qs for those who've had transplants....
Post by: lainiepop on May 26, 2012, 01:40:25 PM
Hi my transplant is on tuesday and ive bombarded my transplant nurses with tons of questions but some of the things i'd love to know i think u guys would be more help with  ;D

Basically just looking for ideas of how certain things were for you when you had yours! Curious to see how much it varies person to person (and i know it will!) Thanks in advance!

1. How did you feel when you woke up?

2. How long were you in the recovery room for before you were moved to a ward?

3. How long after did you drink/eat something?

4. How soon after did they make you (or did you want to?!) get up and about?

5. How long til your kidney function started/improved?

6. When did you feel more like yourself again?

7. When did u feel ready to drive/resume normality?!

8. Ive heard you can 'feel' the donor kidney afterwards, as in feel it being there, is this true?

9. Did you have live or cadaver donor? (this is just my nosiness lol)

10. If you had a live donor when did u get to see/speak to them/know they were doing ok?

11. Last thing, they mentioned on the phone something about a doppler, which they they connect to the kidney and to a machine which tells them kidney is working, i'd never heard of this its not in my booklets, doe anyone know what it is or had one? The girl i spoke to wasn't the transplant nurse but works with them, she didnt seem to know if u only had it for cadaver donors and couldnt tell me what exactly it was, which is why i looked it up in the transplant book which explains the things u'll have and says possibly a stent but no mention of this doppler. Did many of u have a stent? Do u know why some do and some don't?

Thank u anyway, look forward to hearing what u all have to say!!
Marie x
Title: Re: A couple of Qs for those who've had transplants....
Post by: Chris on May 26, 2012, 02:42:14 PM
I will reply later to all the other questions.


The doppler from my experience is a setting on the ultrasound machine.
Title: Re: A couple of Qs for those who've had transplants....
Post by: jeannea on May 26, 2012, 05:05:39 PM
1) i felt pretty good after. Much better than my first 14 yrs ago. I talked to my parents. I had some pain but good pain medicine.

2) i was in ICU overnight. Got moved to a private room by supper the next day.

3) that night I had water. The next day I had liquid breakfast and liquid lunch and a real supper.

4) I don't think I got out of bed for 2 days. But mostly they were giving me a medicine that took 8 hours going in and I was trapped. That med is unusual.

5) kidney function started before they closed me up. Creatinine was down to 1 by second day after.

6) I felt really good after about a week and a half. Up until then I had a decent amount of pain.

7) I wasn't allowed to drive for 5 weeks.

8) You can feel the kidney in there if you press down on the abdomen. No big deal. Don't play rugby.

9) my first was living donor. The one this year was cadaver.

10) The first time my mother was the donor. The day after surgery I walked to her room.

11) Doppler is just a kind of ultrasound. It will feel like any other ultrasound. I had a stent. Some hospitals use them some don't. Don't know why.

You'll be fine. Your biggest problem since you have kids is you can't lift over 10 pounds for about 3 months.

Good luck!
Title: Re: A couple of Qs for those who've had transplants....
Post by: Chris on May 26, 2012, 07:52:37 PM
1. How did you feel when you woke up? The first time I awoke from surgery I felt great, a big difference in the way the whole body felt.

2. How long were you in the recovery room for before you were moved to a ward? Same day

3. How long after did you drink/eat something? I was only allowed to drink and that was on the third day, but didn't drink much of it since it was cold. Only had one coffee while the rest was jello, popsicles. No broth till  told them why I was only having the coffee.

4. How soon after did they make you (or did you want to?!) get up and about? Same day/ night/ early am of next day, however you want to call it and after the nurses rushed in after I se the bed alarms off, the nurses went to get a doctor so I could get up and sit in a chair.

5. How long til your kidney function started/improved? Same day

6. When did you feel more like yourself again? When the incsion did not bother me when I coughed, laughed, or sneezed 2 to 3 weeks later.

7. When did u feel ready to drive/resume normality?! 1 day after getting out, but tried in 3 days after getting out.

8. Ive heard you can 'feel' the donor kidney afterwards, as in feel it being there, is this true? No I do not, but do not try. Doctors always feel for it and I hate that. >:(

9. Did you have live or cadaver donor? (this is just my nosiness lol). Cadaver

Title: Re: A couple of Qs for those who've had transplants....
Post by: bleija on May 26, 2012, 08:09:19 PM
these are some good question, going in for this the first time, this some stuff i never thought about and to see some others experiences is awesome, thanks
Title: Re: A couple of Qs for those who've had transplants....
Post by: Chris on May 26, 2012, 08:13:28 PM
Also, if possible AVOID sport cars for a ride home. The stiff suspension does not help comfort of incision.
Title: Re: A couple of Qs for those who've had transplants....
Post by: KarenInWA on May 26, 2012, 11:11:20 PM
1. How did you feel when you woke up? - Groggy, and felt pain at the incision. Was glad to get up to my room and into "my" bed!

2. How long were you in the recovery room for before you were moved to a ward? - Not really sure, didn't know what time I went in or got out, but I guess maybe around 2-3 hours. This is just a guess

3. How long after did you drink/eat something? - I was taken up to my room at night, maybe around 8 or 9 or so. Nothing for that night. Clear liquid diet for breakfast, regular liquid lunch, and solids by dinner.

4. How soon after did they make you (or did you want to?!) get up and about? - The next morning.

5. How long til your kidney function started/improved? - Mine took a while, it is a slow-moving kidney. My donor is older, 67, but in very good health. My kidney's  creatinine remained stable, but high, in the hospital, and took 2 or 3 months to get below 2.

6. When did you feel more like yourself again? - I had my transplant on 11/23/2011, I started feeling better again in mid to late Dec, and for sure better in January.

7. When did u feel ready to drive/resume normality?! - I got the okay to drive at 2 weeks (was off pain meds right before I left the hospital), and resumed normality in January when I returned to work (4 hr days for 2 wks, then 6 hr days for 2 wks, then 8 hr days)

8. Ive heard you can 'feel' the donor kidney afterwards, as in feel it being there, is this true? - I thought I felt it when I would do things like move my right leg up so I could shave my legs, or sit on the bed and move my right leg up to clip toenails, put on socks, etc. However, now I think I was just feeling scar tissue!

9. Did you have live or cadaver donor? (this is just my nosiness lol) - Live donor!  My Dad's cousin's wife, Lynn. She offered to donate to me out of the blue (which is how it seemed to me, but in reality, she spent a good amount of time thinking about it, praying about it, talking to her clergy and her family) and she passed all the testing with flying colors! At age 67, with this being her first ever surgery, she bounced back better than some donors in their 20's! She went into the whole thing with a positive attitude and was excited about it. She wasn't even nervous! (I was, I admit it!)

10. If you had a live donor when did u get to see/speak to them/know they were doing ok? - My Dad's cousin (okay, and my cousin, too) came into my room and told me how she was doing. She was a couple of rooms down from mine. I saw her the very next day, I just can't remember how I did. Did she come to my room first, or me to hers? That is what I don't remember!

11. Yes, I had a stent. It's not a whole lot of fun getting that removed, but it isn't that bad, either. Once it's over, it's over!

Other things you'll want to know: Yoga pants! If you don't have some, get some! If they tend to fit you snugly, I recommend getting the next size up, because you will want it to fit gently around your waist. I lived in yoga pants after surgery!

And what Chris said about sports cars. You don't want to get into a car that's too low or too high. Four-door cars are best, since the doors aren't heavy. If you know someone who has a Nissan Cube, that would be the perfect car to get driven around in. They're the right height!

 Also, and they'll go over this with you in the hospital, either PT or OT, but one important thing is, do you have a support system in the bathroom around the toilet? Meaning, is the toilet next to your sink/counter? Is it near the bathtub? Do you have something to grab or hold onto while you get up from it? If not, can you get a walker? You will be using it a lot more now, with an incision, so this will be important!!! Your muscles around  your new kidney will need to heal, so you will not be able to use them to help you get up like normal. Something to think about!

KarenInWA
Title: Re: A couple of Qs for those who've had transplants....
Post by: mcclane on May 27, 2012, 03:20:38 PM
Hi my transplant is on tuesday and ive bombarded my transplant nurses with tons of questions but some of the things i'd love to know i think u guys would be more help with  ;D

- first off, congrats on your (upcoming) transplant !  :clap; :clap;

1. How did you feel when you woke up?

- groggier than hell, thanks to the anaesthetic.  I just felt like I wanted to sleep, but I couldn't.

2. How long were you in the recovery room for before you were moved to a ward?

- in my hospital, there wasn't a recovery room per se, they just wheeled me out in an open area where the nurses could monitor you constantly.  I have no idea no long I was there until they moved me back to my room.  I was told by my wife that I didn't get back into my room until 5 or 6 pm (I was wheeled into the surgery area around 8 am).

3. How long after did you drink/eat something?

- they only gave me a sip of water for a day or 2, then they started on liquid diets, like jello and broth.  I was starving for solid food at that point  :rofl;

4. How soon after did they make you (or did you want to?!) get up and about?

- I wanted to get up as soon as they wheeled me back into my room, but the anaesthetic made me too lightheaded to get out of bed.  The next day a nurses' aide came back and made you get out of bed, whether you liked it or not  :yahoo; :yahoo; :rofl; - and that is a good thing.  Laying around in bed won't help you heal faster, nor will it numb the pain any faster either.  Weird as it seems, the more you walked around the  less painful it became.

5. How long til your kidney function started/improved?
- almost right away.  My creatine before surgery was over 1000, after it was like around 140, then dropped steadily during my stay in the hospital, to around 115 ish.  Potassium levels were a tad on the low side but still within range.  My phosphorous levels tanked so low that I required supplements to boost levels, to this day I'm still on those supplements.

6. When did you feel more like yourself again?
- as soon as I could get out of bed myself I felt like myself (that was day 3 or 4 I believe) - as you can tell, I hate being stuck in a hospital bed, so I tried my best to haul my arse out of bed under my own steam ASAP.  My transplant was feb 7, 2012.

7. When did u feel ready to drive/resume normality?!
- hospital recommended about 6 weeks before I should drive, or whenever you can shoulder check safely.  I said screw that and started driving the day after they discharged me from the hospital.  :beer1;  I made damn sure (plus I made a promise to myself) that I would resume my normal life the next day after discharge, and I did.  I was discharged on valentine's day, so my wife and I spent a nice evening together  at home, it was great.
- throughout my entire dialysis days, I continued to workout, and that was my biggest promise to myself, was to haul my butt into the gym the next day after discharge, and I did that.
- I have a pickup and a jeep that's lifted, so that helped immensely.  So with either vehicle, getting out was nice as my legs were pretty much fully extended.  Getting in was ok too, as I didn't have to scooch low or anything.

8. Ive heard you can 'feel' the donor kidney afterwards, as in feel it being there, is this true?
- if I run my fingers near the incision area, yes, I can feel my mom's kidney there.  As for feeling it inside me, I just feel a lump whenever I get up from a sitting pos'n.

9. Did you have live or cadaver donor? (this is just my nosiness lol)
- live, my mom's  :bow; :beer1;

10. If you had a live donor when did u get to see/speak to them/know they were doing ok?
- the next day as my mom's room was just across the hallway and down abit from mine.  She actually got up out of bed before I did.

11. Last thing, they mentioned on the phone something about a doppler, which they they connect to the kidney and to a machine which tells them kidney is working, i'd never heard of this its not in my booklets, doe anyone know what it is or had one? The girl i spoke to wasn't the transplant nurse but works with them, she didnt seem to know if u only had it for cadaver donors and couldnt tell me what exactly it was, which is why i looked it up in the transplant book which explains the things u'll have and says possibly a stent but no mention of this doppler. Did many of u have a stent? Do u know why some do and some don't?
- I have no clue what this doppler is.  I would assume that all the tests done on the donor would indicate whether or not the kidney is working ?? 
- I had a stent, I believe (but someone correct me on this) a stent is up to the hospital doing the transplant.  I know some do and some don't, but mine did.  And I also know yanking that sucker out is not fun, as there is only one way in and one way to get that stent out - and it doesn't involve surgery.  Not sure about this, but a stent may help the kidney drain urine and also help the connections heal ??
Title: Re: A couple of Qs for those who've had transplants....
Post by: jbeany on May 27, 2012, 10:26:08 PM

Okay, so much of this is not going to help you at all.  I had complications up the wazoo, and just about every where else, too.

1. I was terrified when I woke up.  The drugs made me hallucinate giant spiders climbing out of the walls, and made me paranoid enough that I thought the nurse was trying to kill me and was keeping my sister out of the room so she couldn't witness it.  (I apologized when I came down enough to realize where I was and wonder why I was in restraints.)

2. How long were you in the recovery room for before you were moved to a ward?  - Longer than normal, I'm sure.  I believe they moved me shortly after I stopped wrapping imaginary Christmas gifts while my hands were still in the restraints.

3. How long after did you drink/eat something?  They brought me ice chips in the room, and then water, but no clue how long after.

4. How soon after did they make you (or did you want to?!) get up and about? -  Okay - long messy story here about intestines twisting in a knot and me screaming a lot, when they tried to get me to walk to the bathroom to "relieve my constipation" - we'll skip this part.

5. How long til your kidney function started/improved?  Immediately, and got better constantly.  Stayed strong even when everything else went to hell.

6. When did you feel more like yourself again?  - Uh.... still working on it.  But better now than I did before transplant, even with all the other issues.  Totally worth it.

7. When did u feel ready to drive/resume normality?!  Had to relearn to walk first before they let me...details, details!

8. I was such a mess, not such I'm the best judge of if I can feel my new kidney and pancreas.  Too much scar tissue and nerve damage.

9. Cadaver - got THE CALL while I was on D.

10. Gift of Life lets you send letters to the family of your donor.  I got one from my donor's mom, along with a picture of my donor, Lenice.

11. Yup - doppler is just a type of ultrasound.  Might be slightly uncomfortable if they are pressing down on the incision, but otherwise non-invasive.
I had a stent - as mentioned, I think it just depends on the hospital's protocols.
Title: Re: A couple of Qs for those who've had transplants....
Post by: SugarBear on May 27, 2012, 11:10:42 PM
My transplant was three months ago on March 1st.

1. How did you feel when you woke up?  I was sleepy and tired.

2. How long were you in the recovery room for before you were moved to a ward?  It took a while to get me a room, I was there for a good ten hours.

3. How long after did you drink/eat something?  I was on a fluid diet for the first four days before I tried solid food.  I had a hard time eating heavy foods the following two days before it got a little better.

4. How soon after did they make you (or did you want to?!) get up and about?
The very next morning I was told I could get up.
5. How long til your kidney function started/improved?  It started right away but not fast, I was told I have a sleepy kidney that will slowly wake up.

6. When did you feel more like yourself again?  I have yet to feel like myself, but it could be the CMV I have now that is hampering how I feel.

7. When did u feel ready to drive/resume normality?!  I am sure I could drive but I don't own a car.  The fatigue and nausea makes it difficult to feel normal.  Also I now have a low white blood count so I'm back to self imposed captivity.

8. Ive heard you can 'feel' the donor kidney afterwards, as in feel it being there, is this true?  I thought I did at first but that turn out to be the swelling.  Now I can feel it sometimes, but it was the doctor who originally found it by poking around.  Also I was told by my doctor that my donor kidney was bigger than an average kidney.

9. Did you have live or cadaver donor? (this is just my nosiness lol) I had a cadaver donor.

10. If you had a live donor when did u get to see/speak to them/know they were doing OK?  N/A

11. Last thing, they mentioned on the phone something about a Doppler, which they they connect to the kidney and to a machine which tells them kidney is working, I'd never heard of this its not in my booklets, doe anyone know what it is or had one? The girl i spoke to wasn't the transplant nurse but works with them, she didn't seem to know if u only had it for cadaver donors and couldn't tell me what exactly it was, which is why i looked it up in the transplant book which explains the things I'll have and says possibly a stent but no mention of this Doppler. Did many of u have a stent?

Do u know why some do and some don't?  A Doppler was not mention during the initial phone call, but at the hospital many test were done so who knows if they did one on me.

I did have a stent place, it was removed about a month after the transplant.

I would take a small bag of creature comforts for sure, my stay was a week long!
Hope these help!
Title: Re: A couple of Qs for those who've had transplants....
Post by: bleija on May 27, 2012, 11:29:34 PM

Okay, so much of this is not going to help you at all.  I had complications up the wazoo, and just about every where else, too.

1. I was terrified when I woke up.  The drugs made me hallucinate giant spiders climbing out of the walls, and made me paranoid enough that I thought the nurse was trying to kill me and was keeping my sister out of the room so she couldn't witness it.  (I apologized when I came down enough to realize where I was and wonder why I was in restraints.)

2. How long were you in the recovery room for before you were moved to a ward?  - Longer than normal, I'm sure.  I believe they moved me shortly after I stopped wrapping imaginary Christmas gifts while my hands were still in the restraints.

3. How long after did you drink/eat something?  They brought me ice chips in the room, and then water, but no clue how long after.

4. How soon after did they make you (or did you want to?!) get up and about? -  Okay - long messy story here about intestines twisting in a knot and me screaming a lot, when they tried to get me to walk to the bathroom to "relieve my constipation" - we'll skip this part.

5. How long til your kidney function started/improved?  Immediately, and got better constantly.  Stayed strong even when everything else went to hell.

6. When did you feel more like yourself again?  - Uh.... still working on it.  But better now than I did before transplant, even with all the other issues.  Totally worth it.

7. When did u feel ready to drive/resume normality?!  Had to relearn to walk first before they let me...details, details!

8. I was such a mess, not such I'm the best judge of if I can feel my new kidney and pancreas.  Too much scar tissue and nerve damage.

9. Cadaver - got THE CALL while I was on D.

10. Gift of Life lets you send letters to the family of your donor.  I got one from my donor's mom, along with a picture of my donor, Lenice.

11. Yup - doppler is just a type of ultrasound.  Might be slightly uncomfortable if they are pressing down on the incision, but otherwise non-invasive.
I had a stent - as mentioned, I think it just depends on the hospital's protocols.

Wow, all I can say is what an experience... i hope ours is far from this!!!  lol but wow i hope things smoothed out :bow;
Title: Re: A couple of Qs for those who've had transplants....
Post by: WishIKnew on May 28, 2012, 08:28:59 AM
I waited almost 5 years on the list and got the call at 3 a.m.  My husband, my 14 yr old son and I arrived at the hospital about 4:30 a.m.  I was so excited I was literally dancing around and everyone though my husband, who was in a wheel chair with a cast on his ankle from a ankle surgery just days before, was the patient.  We had to wait for my sister-in-law to come over and stay with our old anxiety filled dog and it's an hour drive to my transplant center.  They got me into a room about 5 and we waited.  They drew blood and ran tests.  at 10 they announced it was definitely a go and they were simply waiting for an open operating room.

They wheeled me into pre-op around 11.  I went into surgery about 1.  I was excited and anxious and pretty doped up.

I came out of surgery into post-op about 5 p.m..  All went well.  I remained in post op until 3 a.m., not because anything was wrong but because there were no beds in ICU.  During the post-op time I peed over 4 liters!  Everyone was thrilled! I just remember fading in and out and being really thirsty.  I don't remember being in pain.

I was in ICE about 12 hours (3 a.m. to 3 p.m.)  During that time I remember crying because of all of the overwhelming emotions.  The nurses got me up to sit in a chair for awhile.  I remember that hurting a lot.  I did not like the foley catheter which I had for 5 days.

They wheeled me in a wheel chair to my room.  I don't remember much of this but I am told I was giddy and over joyed and chattered a lot.  This was Friday afternoon.

I was shocked to see how big the incision was.  30 staples.  I was uncomfortable because they had shaved part of my pubic hair and as they began to grow they poked my thigh and caused like a rash.  At the time it was annoying, but looking back really no big deal!

On Monday the physical therapist came with a walker to teach me how to sit up and get out of bed and try to get me to walk a little with the walker.  She could not find me because I was out slowly walking all over the unit.  I had bee since Saturday.  Guess I didn't know I was supposed to wait for her.  LOL

There was a lot of medication education and even a test of my meds I had to pass before they would release me.  I was taking 32 pills a day when released.  They sent me home with a month supply of meds. (4 month out now, I'm down to 17 pills a day).

I was released on Tuesday afternoon.  I was in pain but tried to keep in front of it with y pain meds.  I slept a lot for the first week or two.

I went back just a week later to get my PD catheter removed and that surgery I felt was a little too soon.  I just needed more time to heal, but, I will say now, I'm glad they just did it whole I was already in pain and just got it done!  I worried about having the staples removed but that really was no big deal at all.

I've had one hospitalization since transplant and that was for an infection.  I had a stomach bug and they hospitalized me to keep an eye on me.  No big deal.  I felt fine.

It took longer than I expected to get moving again.  Try not to expect too much of yourself too soon.  Think in terms of months, not  weeks.

I'd do it all again in a heartbeat.  I wish you the best tomorrow!!!!!

 :flower; :flower; :flower;

I
Title: Re: A couple of Qs for those who've had transplants....
Post by: Poppylicious on May 28, 2012, 11:43:55 AM
Me typing on behalf of Blokey (who has no idea why I'm asking him random questions about transplantation!)

1. How did you feel when you woke up?
Anxious, nervous, scared; he had a doctor leaning over him running an ultrasound and sounding worried.

2. How long were you in the recovery room for before you were moved to a ward?
Quite a long time (a good few hours) but only because they were thinking they might have to take him back into surgery to sort something out.  They didn't.

3. How long after did you drink/eat something?
Drank: within an hour of being on the ward. Eat: A couple of days.

4. How soon after did they make you (or did you want to?!) get up and about?
Two days to get him into a chair, three days to get him walking round the ward. I remember he really didn't want to move and was being a stubbon chap!

5. How long til your kidney function started/improved?
Straight away, but not very well.  Took about three weeks to properly kick in.

6. When did you feel more like yourself again?
About a week after (when he got home from Hospital and his mum's) but still not really happy as Our Kidney wasn't functioning properly.

7. When did u feel ready to drive/resume normality?!
Felt up to driving about three weeks after the op, but didn't actually drive till just after four weeks.  Didn't go back to work for two and a bit months, but that was mainly because he had lots of holiday accrued.

8. Ive heard you can 'feel' the donor kidney afterwards, as in feel it being there, is this true?
He says his stomach feels like it's bulging.  He isn't sure if it's psychological though!

9. Did you have live or cadaver donor? (this is just my nosiness lol)
He has mine!

10. If you had a live donor when did u get to see/speak to them/know they were doing ok?
We saw each other the following morning.  The nurses/my mum relayed how we were to each other.

Can't help with number 11 though! 

*huggles* for tomorrow!!
Title: Re: A couple of Qs for those who've had transplants....
Post by: lainiepop on May 28, 2012, 12:54:58 PM
Thank u all so much for all your input sorry i havent had a chance to reply to your posts indiviidually but its 9pm here in the uk and im gonna pack my bag and try sleep cos we have to be in hospital 7am tomorrow, dad goes down at 8.30 i'll be hanging round til lunch time, will be the worst part! Getting worried now! Your words have helped me tons i just wish i could fast forward a couple weeks u know!! Will update youall when i can with my experiences post transplsnt lolxx
Title: Re: A couple of Qs for those who've had transplants....
Post by: bleija on May 28, 2012, 01:37:42 PM
let us know how everything goes once ur feeling up to it... good luck, best wishes hope everything goes smoothly... im excited and nervous for you
Title: Re: A couple of Qs for those who've had transplants....
Post by: Poppylicious on May 28, 2012, 01:50:48 PM
Thank u all so much for all your input sorry i havent had a chance to reply to your posts indiviidually but its 9pm here in the uk and im gonna pack my bag and try sleep cos we have to be in hospital 7am tomorrow, dad goes down at 8.30 i'll be hanging round til lunch time, will be the worst part! Getting worried now! Your words have helped me tons i just wish i could fast forward a couple weeks u know!! Will update youall when i can with my experiences post transplsnt lolxx
Gosh, we were both admitted to Hospital the evening before (although in hindsight that may have been because Blokey had a final haemoD session and it wasn't worth driving home thirty miles only to drive back again hours later.)

Will wait patiently for updates.

 ;D
Title: Re: A couple of Qs for those who've had transplants....
Post by: paris on May 28, 2012, 06:47:39 PM
A little slow on my reply!  Regarding feeling the kidney: yes, I can actually feel mine.  The doctors kept telling me you could feel it, so I had them show me and explain what I was feeling.  Now, I run my fingers around the outline just to remind myself that "Sean Michael" is still there!!

I'll be keeping you and your Dad in my thoughts and prayers while you go through this.   You will feel better, and every three months or so, you will feel even better.  After 1 year, I was me again!  I'm at 21 months and am still surprised how much I can do now.  I thank God for my donor every day.      :grouphug;
Title: Re: A couple of Qs for those who've had transplants....
Post by: Meinuk on May 29, 2012, 10:04:40 AM
1. How did you feel when you woke up?  Groggy, and I wanted my phone.

2. How long were you in the recovery room for before you were moved to a ward? I was in surgical stepdown for three days.

3. How long after did you drink/eat something? I was on liquids almost as soon as I woke up, and I ate some cereal and the white of a hard boiled egg on day three.

4. How soon after did they make you (or did you want to?!) get up and about? Either the next day or the day after that, I'd have to go back to my diary.  At first I was sitting up in a char, and then next I was doing laps around the Nursing Station.  (It is all a blur now almost four years later)

5. How long til your kidney function started/improved? I was "peeing on the table" or so my surgeon says....

6. When did you feel more like yourself again? My skin felt cleaner almost immediately.  I've never felt "like myself" because I don't remember what that was.  BUT I was feeling very positive by day four.

7. When did u feel ready to drive/resume normality?! I lived in NYC, so no driving as a rule.  But I was up and about and dragging home a Christmas tree by week 4.

8. Ive heard you can 'feel' the donor kidney afterwards, as in feel it being there, is this true? Yes. I kind of rub the spot above my boy kidney without realizing it.

9. Did you have live or cadaver donor? (this is just my nosiness lol)  I have the kidney of a 32 year old man who died due to respiratory arrest.

10. If you had a live donor when did u get to see/speak to them/know they were doing ok? N/A

11. Last thing, they mentioned on the phone something about a doppler, which they they connect to the kidney and to a machine which tells them kidney is working, i'd never heard of this its not in my booklets, doe anyone know what it is or had one? A Doppler is a sort of hand held ultrasound that can be used to check blood flow.

The girl i spoke to wasn't the transplant nurse but works with them, she didnt seem to know if u only had it for cadaver donors and couldnt tell me what exactly it was, which is why i looked it up in the transplant book which explains the things u'll have and says possibly a stent but no mention of this doppler. Did many of u have a stent? Do u know why some do and some don't?
I had a stent.
Title: Re: A couple of Qs for those who've had transplants....
Post by: lainiepop on May 30, 2012, 09:26:51 AM
Hi guys all went well with op will post more later I'm just gonna start a new thread about it!x
Title: Re: A couple of Qs for those who've had transplants....
Post by: MaryJoe on May 30, 2012, 09:39:27 AM
lainiepop! I'm glad everything went so well.  :clap;  I'm also amazed you are posting this soon...glad to hear from you, but still amazed.

MJ
Title: Re: A couple of Qs for those who've had transplants....
Post by: Poppylicious on May 30, 2012, 09:56:14 AM
 :yahoo; :2thumbsup; :clap;

 Looking forward to all the gory (or not so gory) details!  Hope your dad is okay too!
Title: Re: A couple of Qs for those who've had transplants....
Post by: lainiepop on May 30, 2012, 01:52:00 PM
Well its now 9. 30pm in UK & got my kidney from dad at around 3Pm
yesterday. I think it started working right away.

so The figures so far are: Yesterday before the OP my creatinine was 500, got
my Kidney at 3pm yesterday & this morn 6am bloods showed at 299! and at
6pm this eve level was 194! Has gone from 9% function to 16% to about 26 !
surgeon was very happy wIth it so far & bladder is draining fine but still need
to see what happens when I stand up as my bladder is in different place to
normal so its just wait & see.

Hopefully kidney's on track now
I had a real adrenalin rush & was a bit hyper & existed but that's crashing
now, just worried bout bladder more. am just shattered & scared & am
desperate to see dad, maybe tomorrow, he's amazing best dad ever. he sayS
elena makes him losing a Kidrey worthwhile & she says grandad to him now
Right need some sleep as was Woken every 20 min s last night by beepirg or
something. will keep you updated, marie x
Title: Re: A couple of Qs for those who've had transplants....
Post by: lainiepop on May 30, 2012, 01:55:01 PM
oh transplant nurse said she asked dad if he felt like he'd been hit by a bus &
he said yes, a double decker bus! love him & am so proud of him, but they
told me he's just worried bout how I'm doing aww & was chuffed his kidneys
working so quickly in me too x
Title: Re: A couple of Qs for those who've had transplants....
Post by: lainiepop on May 31, 2012, 03:26:53 PM
just got my Latest blood results, Creatinine 86, gfr 7O, lowest I've ever had, can't wait to tell dad. I'm half Laughing half crying & it hurts but I don't care !! Just hope it stays this way!x
Title: Re: A couple of Qs for those who've had transplants....
Post by: jbeany on May 31, 2012, 03:44:32 PM
 :bandance; :bandance; :bandance; :bandance; :bandance;
Title: Re: A couple of Qs for those who've had transplants....
Post by: SugarBear on May 31, 2012, 04:27:23 PM
 :cheer: :bow; :grouphug;
Title: Re: A couple of Qs for those who've had transplants....
Post by: MaryJoe on June 01, 2012, 03:51:23 PM
 :yahoo;  :clap; Oh lanie, I'm so happy for you...and your amazing dad!   :clap;  :yahoo;

MJ
Title: Re: A couple of Qs for those who've had transplants....
Post by: lainiepop on June 01, 2012, 04:12:44 PM
thanks guys! had emotional reunion with dad yesterday even docs Were cying they said they never seen a Kidney work so well so fast. they did say before 0P dad had super function for his age! he's gone home, i'm very sore & pretty swollen & extra complicated cos of my different bladder structure but hopefully we're on track!
I haven't seen ' myself but am told I look good & about 18 hehe! x
Title: Re: A couple of Qs for those who've had transplants....
Post by: brandywine on June 02, 2012, 03:35:06 PM
Laniepop, SO glad that things are going so well for you. I'm almost 2 weeks post-op and keep having minor complications. Here are my answers to your questions, better late than never.
1. How did you feel when you woke up? Awful. I kept throwing up from the anesthesia.

2. How long were you in the recovery room for before you were moved to a ward? About 2-3 hours

3. How long after did you drink/eat something? I tried ice chips that night because I was so thirsty but I kept getting sick so they stopped until the next morning. I was able to eat a normal breakfast after holding down some water.

4. How soon after did they make you (or did you want to?!) get up and about? The next morning.

5. How long til your kidney function started/improved? Fairly quickly. When I was discharged from the hospital I was at 1.4. Now I'm 1.7. The doctor's are having a time with my prograf balance.

6. When did you feel more like yourself again? I don't yet. There are so many side effects of the meds. My stomach is tore up bad. I'm extremely sensitive to heat. My hands and feet keep burning/itching, and I have headaches.

7. When did u feel ready to drive/resume normality?! They haven't told me when I can drive.

8. Ive heard you can 'feel' the donor kidney afterwards, as in feel it being there, is this true? I definitely can, or I think I can. it's just above my incision.

9. Did you have live or cadaver donor? (this is just my nosiness lol). Live, my donor was 68.

10. If you had a live donor when did u get to see/speak to them/know they were doing ok? She came to visit me the first night, but I was out of it mostly. I went to visit her the next day.

11. Last thing, they mentioned on the phone something about a doppler, which they they connect to the kidney and to a machine which tells them kidney is working, i'd never heard of this its not in my booklets, doe anyone know what it is or had one? I've had two ultrasounds. The first one showed swelling in my new kidney, but the second was clean. My blood flow is a little weak.
Title: Re: A couple of Qs for those who've had transplants....
Post by: lainiepop on June 03, 2012, 12:56:42 AM
thought it was about time i answered my own questions am now 5 days post op.

1. How did you feel when you woke up?
tired groggy sicky. worried cos had only been in surgery about 3hrs and had been told may take 6 cos of my bladder complications so was scared kidney didnt go in. it did, upside down !

2. How long were you in the recovery room for before you were moved to a ward?
maybe a couple hours. i was asleep the first hour then talked gobbeldygook the next half hr, i dont remember this tho.

3. How long after did you drink/eat something?
just had sips of water for first couple days cos i kept throwing up. onl just wanted to really eat yesterday asbeen so swollen

4. How soon after did they make you (or did you want to?!) get up and about?
i wanted to gt out day 2 but was so weak from low hb nearly fainted. i lost blood as my op was more complicated and had some blood which perked me up. got out day 3 but am still in quite a bit of pain.

5. How long til your kidney function started/improved?
instantly i think. tues morn before op creatinine was 500, wed morn 299, wed night 194, thurs morn 117, thurs night 87. then thy stopped fluids through drip  and sat morn 93 o we;ll see where that goes but i dont remember it ever being less than 140.

6. When did you feel more like yourself again?
after blood transfusion. if it weren for the pain id feel pretty good

7. When did u feel ready to drive/resume normality?!
notyet

8. Ive heard you can 'feel' the donor kidney afterwards, as in feel it being there, is this true?
not sure too sore

9. Did you have live or cadaver donor? (this is just my nosiness lol)
live my dad age 66

10. If you had a live donor when did u get to see/speak to them/know they were doing ok?
transplan  nurse told me he was fine, he came to see me on day 3 the day he went home. im on level 3 hes on 8 so a long way from me

11. Last thing, they mentioned on the phone something about a doppler, which they they connect to the kidney and to a machine which tells them kidney is working, i'd never heard of this its not in my booklets, doe anyone know what it is or had one? The girl i spoke to wasn't the transplant nurse but works with them, she didnt seem to know if u only had it for cadaver donors and couldnt tell me what exactly it was, which is why i looked it up in the transplant book which explains the things u'll have and says possibly a stent but no mention of this doppler. Did many of u have a stent? Do u know why some do and some don't?
doppler was inside connected to kidne so can hear it workin, they tok it out yesterday. i have a stent.
Marie x
[/quote]
Title: Re: A couple of Qs for those who've had transplants....
Post by: lainiepop on June 03, 2012, 05:54:11 AM
brandy glad your transplant went well too hope they sort your levels out soon.

my creatinine was 87 his morning so been stable the last 3 days they wont tell me anything else just that alls ok and stop worrying but im terrified of it all going wrong.xx
Title: Re: A couple of Qs for those who've had transplants....
Post by: WishIKnew on June 03, 2012, 07:32:41 AM
Oh lainiepop, I clearly remember the fear that I had.  They kept telling me all was great and I kept worrying!  With each passing healthy day the fear diminishes a little, but I won't lie to you.  At 4 months out I still worry a great deal that something will go wrong.  Right now I have a chest cold and my anxiety is on high alert. 

My friend got me a bracelet that says TRUST, and I think that's the key, hard as it is, we've got our lives back and now it's our job to learn to trust it.  Did you name your kidney?  Mine is Sheldon and I talk to him a lot.  Promise to do my best to take care of him.  Thank him for doing such a wonderful job.  Sounds silly, I know, but I think it helps me build a trust, like we are in this together. 

Lainiepop i think of you and your dad all the time.  My dad passed away suddenly almost 20 years ago, long before my kidney problems were real to me.  We donated his organs.  Nine people got transplants.   I know I did not get my dad's kidney, like you did.  But I do think, in a karma, pay it forward sort of way I did get my dad's kidney.  Anyway, I'm babbling.  Wishing you the best today and all the days to come.  I know your dad's home.  How is he doing?

 :flower; :flower; :flower;
Title: Re: A couple of Qs for those who've had transplants....
Post by: lainiepop on June 03, 2012, 11:29:34 AM
thanks wish i knew. your not babbling i get what your  saying. i feel so bonded to my  dad now and we;re both so emotional. hes happy as i was born wrong and hes fixed me, let me avoid dialysis and gained my son and daughter too.

i do trust and we go  to church and my faith  has helped, altho wavered when we had real issues conceiving i now see the timing was right with the baby the kidney failure and dad donating as if it hhad happened a few yrs later dad would be too old.

they took my wound drain and  neck line out today, wound drain hurt and am still prety sore! xx
Title: Re: A couple of Qs for those who've had transplants....
Post by: lainiepop on June 06, 2012, 12:51:56 PM
Hi everyone am 8 days post OP & home with mum dad hubby & Kids. Got to go back for bloods etc & to have my catheter & stent removed by my urologi st cos of my unusual bladder structure.
left on a high with last 2 days creatinine being 79 gfr 78! I know it will fluctuate up but just so amazed it even reached that sort of figure. looking forward to getting some sleep tonight , there was a right snorer on my ward Lol! x