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Aaisha.Dar
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« on: September 03, 2019, 07:12:12 PM »

Hello all long time no talk,

First it was school that was keeping me very busy but then BOOM a phone call. Last Monday about 11pm I got a call saying there was a potential match for me. It was a very good kidney and the donor was just 20 years of age. Very sad. I was very hesitant to take it I thought I was not mentally ready... then again who is? The coordinator especially told me offers like this don't come easily and my sisters were very convincing saying how I wouldn't have to worry about dialysis which was a huge pro. So I took the call and had to meet with everyone at Medstar Georgetown Hospital.
I arrived with my sister within 30 or so minutes and immediately was put on dialysis. The head of transplant had to warn me about some risks which made my stomach drop. She said during the revival of the kidney a ton of medication was given to the donor that it diluted the blood. Meaning they were unable to screen for Hepatitis , HIV etc. I gave myself time to think about it and talked to my family and still ended up taking it.
Dialysis seemed to take a long time. The doctors decided to keep all the extra fluid on me because my low blood pressure and I was very overloaded with fluid. Next thing you know dialysis ends I get a chest x ray and then I am off to the OR. I was internally sobbing because I didn't want to through the aftermath of the surgery. I spoke to my family before going in and it just made me more emotional.
I go to the OR and I am pretty sure you know what happens next....
I woke up to a lot of pain which was expected and the nurses took great care of me. So I was on the transplant room for not even 1 day and get moved to the ICU because the medication that were given me to raise my pressure needed to be monitored. It Tuesday and I am still here. The catheter did not produce a lot of urine. We wait a few days for kidney function but so far nothing.
The doctors came in the morning and said I would be needing a biopsy to determine whether or not my original disease (nephrotic syndrome FSGS) was attacking it. They want to be on the safe side.

This whole process I can't explain in words is too much to handle for me. The extra fluid in my legs make it so difficult to walk. The nausea doesn't ever stop. I don't know what I expected but it was surely not this.Having to re learn everything constantly is very hard. The doctors don't even mention if I can go home. Today out of all days I was very emotional. I am not sure why. I wanted the kidney but also didn't want it... hope you understand that.

Who else had kidney from a deceased donor? Did it take long for it to wake up? When will all my swelling go away. I peed today but not a lot just 1 time today.
I am very nervous about this biopsy. I wish I could go home this process is mentally, physically and emotionally draining. Please pray for me dialysis family! I need it :'(/.
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MooseMom
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« Reply #1 on: September 03, 2019, 07:49:10 PM »

My first instinct is to offer congratulations on your new kidney, but you seem to be having a rough time both physically and emotionally, so I will just say that I hope everything will be OK and that the biopsy will not show any signs of FSGS.

Your life has literally changed overnight, so it is certainly understandable that your emotions are all over the place.  Be patient with yourself.  The doctors are there to do everything they can to help you.

I have a kidney from a deceased donor.  I am fortunate that I did not have to go on dialysis (almost, though), so perhaps my body was generally healthier, and so I did not have any complications.  My kidney woke up immediately, but before they put me under, I was told that it was possible that it would not.  But my experience is not terribly relevant, but since you asked, I didn't want to just ignore your question.

I can understand wanting the kidney because you wanted to no longer have to go on dialysis, but at the same time, I can understand that dialysis is the devil you know, while transplant is not.  Transplant is a whole new ball game.  The rules are different, and just after having major surgery is not the best time to have to learn new rules.

At least you are well enough to be able to post here on IHD.  I always take that as a good sign.  Thank you for taking the time to let us know about your transplant.

Of course we will pray for you and will hope for only the best possible outcome.  I look forward to hearing good news from you in the not too distant future!
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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."
Aaisha.Dar
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« Reply #2 on: September 04, 2019, 09:34:32 AM »

Thank you MooseMom,
What you are saying is absolutely true. It feels good that people understand exactly what I’m feeling. My mom said literally the same thing which is why she wasn’t really up for me having a transplant. So it’s been hard on my mom also. She hates seeing how much I am suffering right now and she worries. This was a huge decision I hope the outcome is a good one.

Update: I got my biopsy done today and even with 10mg oxy I am still in so much pain.
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Cupcake
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a good year for Chevys

« Reply #3 on: September 04, 2019, 10:05:28 AM »

This too shall pass--I suspect that kidney will wake up and your swelling/pain/and emotions will all improve. Remember that the transplant team really really wants you to do well, so they will work very hard to give you a great outcome.

I had my transplant 11 months ago, had a few setbacks with a post op infection/second surgery/ etc but I am leaving in 4 days for 2 weeks driving around Ireland to celebrate. No dialysis machines to pack or schedule; my transplant meds all fit in one pill sorter, and no dressings, etc to pack. You are so young, you deserve to have a less complicated life, and transplant is the means to the end. Hang in there, it will get better.
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PD for 2 years then living donor transplant October 2018.
LorinnPKD
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« Reply #4 on: September 04, 2019, 10:52:44 AM »

Wow, what a whirlwind!  Surgery recovery is no joke, and when they are encouraging you to walk and move, go gently but do it!  It really helps to bring down the pain and speed up recovery! 

I have a friend whose husband just received a kidney and it took about a week for the transplant to wake up.  My dad, it took several days. Every case is different.  It's perfectly normal to worry about the process and what comes next.  It's a huge change.

I had a double nephrectomy this summer -- VERY similar abdominal surgery, but with the opposite result!  This was 2 1/2 months ago and it took a few weeks for most of the swelling to go down.  Surgery site is healed nicely and scars are already fading.

Wishing you good results and a speedy recovery!
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Aaisha.Dar
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« Reply #5 on: September 04, 2019, 12:50:46 PM »

Thank you everyone for your kind words. I needed to hear it and got very emotional. I need to take things one step at a time I guess.

I wanted to mention that yesterday I peed some but didn’t at all today. Also how do you know when the kidney is working? Is it the labs?

Are they still going to let me go home despite the kidney functioning? I will just go to my regular dialysis place again
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cassandra
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When all else fails run in circles, shout loudly

« Reply #6 on: September 04, 2019, 03:58:39 PM »

Dear Aaisha, I’m so glad you got a kidney, and it surely will wake up.


Lots and lots of love, luck and strength, Cas


   :cuddle;
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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
Aaisha.Dar
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« Reply #7 on: September 04, 2019, 04:06:21 PM »

Doctors said until the kidney works it’s dialysis. I didn’t expect this at all. Transplant is supposed to make things easier. At this point I will be eating transplant meds and taking care of this kidney AND going to dialysis
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LorinnPKD
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« Reply #8 on: September 05, 2019, 12:25:53 AM »

Hi Aaisha, it's OK!

It's perfectly normal and OK for them to have you on acute dialysis while the kidney wakes up.  From what I can tell, it's not unusual at all.  With both transplant recipients I spoke of, they both needed acute dialysis for a week or more to help keep things in check while they gave the kidney time to wake up.  And then the kidney woke up!  The dialysis helped keep them from fluid and toxin overload until the kidney was ready to take over.

I know you must be exhausted.  It's a big surgery and a lot of change all at once!  Keep taking your meds and giving your kidney the time it needs, and focusing on recovery.

I'll be sending you good energy!
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kristina
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« Reply #9 on: September 05, 2019, 02:29:56 AM »

Hello all long time no talk,

First it was school that was keeping me very busy but then BOOM a phone call. Last Monday about 11pm I got a call saying there was a potential match for me. It was a very good kidney and the donor was just 20 years of age. Very sad. I was very hesitant to take it I thought I was not mentally ready... then again who is? The coordinator especially told me offers like this don't come easily and my sisters were very convincing saying how I wouldn't have to worry about dialysis which was a huge pro. So I took the call and had to meet with everyone at Medstar Georgetown Hospital.
I arrived with my sister within 30 or so minutes and immediately was put on dialysis. The head of transplant had to warn me about some risks which made my stomach drop. She said during the revival of the kidney a ton of medication was given to the donor that it diluted the blood. Meaning they were unable to screen for Hepatitis , HIV etc. I gave myself time to think about it and talked to my family and still ended up taking it.
Dialysis seemed to take a long time. The doctors decided to keep all the extra fluid on me because my low blood pressure and I was very overloaded with fluid. Next thing you know dialysis ends I get a chest x ray and then I am off to the OR. I was internally sobbing because I didn't want to through the aftermath of the surgery. I spoke to my family before going in and it just made me more emotional.
I go to the OR and I am pretty sure you know what happens next....
I woke up to a lot of pain which was expected and the nurses took great care of me. So I was on the transplant room for not even 1 day and get moved to the ICU because the medication that were given me to raise my pressure needed to be monitored. It Tuesday and I am still here. The catheter did not produce a lot of urine. We wait a few days for kidney function but so far nothing.
The doctors came in the morning and said I would be needing a biopsy to determine whether or not my original disease (nephrotic syndrome FSGS) was attacking it. They want to be on the safe side.

This whole process I can't explain in words is too much to handle for me. The extra fluid in my legs make it so difficult to walk. The nausea doesn't ever stop. I don't know what I expected but it was surely not this.Having to re learn everything constantly is very hard. The doctors don't even mention if I can go home. Today out of all days I was very emotional. I am not sure why. I wanted the kidney but also didn't want it... hope you understand that.

Who else had kidney from a deceased donor? Did it take long for it to wake up? When will all my swelling go away. I peed today but not a lot just 1 time today.
I am very nervous about this biopsy. I wish I could go home this process is mentally, physically and emotionally draining. Please pray for me dialysis family! I need it :'(/.


Hello and I have just been reading about your problems with your new kidney and please be assured that your new kidney may take time to wake up. It also may take time for your body to “feel at home” with the new kidney.
Don’t forget, your body has been a little bit “weakened” by being on dialysis for a while and now, all of a sudden, it all has changed and there is a strange new organ in your body ! Of course it does not go that easy from day one. Your body is also on lots of medication and that is a new “thing” as well.
So please be a bit patient.
I was told that the first year may be a bit difficult and very often it is. Just go with what your doctors say and take your medications every day up to minute precisely to the usual time (I use for it two alarm clocks just to make sure, I am still going through my first year after transplant) and please eat easy digestible food and drink as much water as the doctors told you to drink. I always make sure that I drink most of my “quantum” during the day until about 5-to-6pm, so that I can sleep better through the night without too many “walkies” to the bathroom.
Please make absolutely sure that two hours before the medication-intake you stop eating and not to eat during the two hours after intake of medication. That is very important, because it is the only way for the medication to have most impact to keep the new kidney. The more you stay with the doctors and this strict regime, the better your chances are to keep the new kidney “happy”  and avoid dialysis from then on.
Best wishes and good luck 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 ...
Aaisha.Dar
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« Reply #10 on: September 06, 2019, 04:28:19 PM »

Hi all,
I came home last night. Its been tough. I also had a doctors appointment to go over biopsy results. Biopsy showed there was no sign of my original disease nephrotic syndrome which is excellent news. I did make urine yesterday. Doctor said thats how it starts and it gradually increases. I will remain on dialysis until kidney fully functions and I must stay hydrated and keep my pressures on the higher side to promote blood flow to the new kidney. I am very swollen like 12kg of water weight. The doctor said this will help your blood pressure and eventually help the kidney. Its hard to lug this extra weight around but anything will have to do at this point.

Important: despite how tired I was last night I could not sleep. My body has these spasms and sometimes its my incision site very painful. Im restless im tired I feel fatigue. Im on oxy for pain meds but its not helping much. All I want to do is sleep please. Also the ledt side where my operation was left my leg in lots of pain since the surgery. Its hurts even touching it. I believe it has to do with the nerves. My appetite is non existent. I get major heartburn if I eat something with spice. I do not mean to sound like a complainer butthis is quite a lot to handle! My emotions are all over the place. Keep me in ur prayers all
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iolaire
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« Reply #11 on: September 06, 2019, 04:33:18 PM »

 Congratulations Aaisha.Dar. Sorry you have to continue dialysis for a while. The pain definitely hangs around for a while but with time it will decrease. Sleeping can be hard especially if the high prednisone is giving you bad/nasty dreams.   Are they seeing an improvement creatinine yet?  It took me a few weeks to get down into the not bad range.
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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.
Aaisha.Dar
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« Reply #12 on: September 06, 2019, 09:18:54 PM »

Congratulations Aaisha.Dar. Sorry you have to continue dialysis for a while. The pain definitely hangs around for a while but with time it will decrease. Sleeping can be hard especially if the high prednisone is giving you bad/nasty dreams.   Are they seeing an improvement creatinine yet?  It took me a few weeks to get down into the not bad range.

Thank you. I am not on prednisone. I was only on it after surgery like a high dose but thats it. Its the spasms that keep me awake.
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