Questions re Transplant

[Python]

Since the last time I was on here my son's transplant which was the wonderful gift of a live kidney from my brother to my son, unfortunately it was poisoned by Tacrolimus after 6 years.  Ian's been back on dialysis for the past 4 years, had a Herograft put in his arm and he's been fine on haemodialysis this time.  Never lost his appetite either so was good at eating me out of house and home.

He got the call last Wednesday that a kidney had become available and was a good match for him.  We are Scottish but live in the South West of England.  The donated kidney has come from...wait for it...Scotland!

The op went ahead last Thursday so it's very early days yet.  At first they didn't think the kidney was going to work as it didn't look good on the post transplant scan but the second scan showed it was infused with blood so Ian was finally, after several hours in Recovery transferred back to the ward.

Since then there have been a couple of things we could do with answers to and I know on here someone will probably have had the same things happen.

First is post op Ian's left arm is numb.  He can move his arm and hand but can't feel anything - it's like he's got constant pins and needles.  Docs say it does happen sometimes - a combination of the anaesthesia and also the way his arm was positioned while he was on the operating table - he has a Herograft in that arm (which is working fine) and they had to keep it in a certain position.  They think it will come back to normal in a few days.

The second thing, and something that made Ian freak out was his whole body has swelled up.  He's a naturally thin person (he's 32 now BTW) and he's really swollen up, especially round his face - he's sporting a rather large double chin at the moment.  The docs think it could be a reaction to one of the drugs he's on but being the weekend they're short staffed.  They don't seem to be concerned about it at all.  Ian also has a slight rash on one of his legs, like tiny pinpricks.  He sent me pics across Facebook Messenger (we live 40 miles from the hospital) as he was really panicked, thought he might have septicaemia.  I took one look at the pics and thought "allergic reaction".  We're hoping he gets some answers later today (Monday).

The kidney itself is a cadaver this time and it went to sleep.  At the moment there is more blood in the urine bag but one of the surgeons popped in last night and said although the kidney wasn't doing much, a little blood goes a long way and would colour any urine red.  He also said that it can take 2 - 4 weeks for the kidney to wake up.

Spoke with Ian across Messenger earlier tonight.  They gave him a 3 hour dialysis session...but...they took a blood test before that AND his creatinine level had dropped so it looks like the kidney is starting to wake up 

They removed all the canulas, drain and tubes on Saturday afternoon.  The only thing Ian's got left is the catheter and urine bag.  As soon as they removed the lines, he got up, dressed and went for a wander outside.  He's still very sore as he has a lot of bruising, especially in his groin but nothing he can't handle.

If anyone can throw light on the problems of swelling he's having we'd be very grateful.  I will be going to visit him this evening but I should think the doctors might have an answer for him later today.

I know he's on the mend because he's bored now and complaining about the food.  Missing my home cooking LOL.

Anyway, hoping everyone's keeping well and looking forward to Christmas.

[Simon Dog]

I had my xplant on 9/7/18 in Boston.

I had significant paresthesia in the right hand post surgery lasting 3 days.  They told it was from the positioning of my arm on the table.  It subsided over the course of a few days and was gone by the time I was discharged 4 days post surgery.  The MDs were very confident this would happen and told not to worry, just wait it out, when I reported it.

I have some pins and needles occasionally in the right hand, probably from the tacro (I am on 1.5MG BID plus 500 Celcept BID that gives me a trough of 8 at last measurement).    It has subsided significantly since the xplant.

Also, severe bilateral pedal edema.   No sign of clots on 3 ultrasounds; biopsy shows nothing bad going on in kidney.   MD does not want contrast CT since bilateral causes him to unsuspect iliac venous stenosis and he is concerned the dye could damage my new kidney.   On 20 Lasix BID; edema subsiding a teeny bit.

Kidney took a day post surgery to wake up (cadaver organ).  The MD told me "this happens with cadaver organs, but they always wake up".  He was right.

I was walking around the day after the xplant.  The incision pain was very minor, however, the foley cath gave me the "gotta go really bad right now" feeling for the entire 72 hours it was in.  One of the surgeons was kind enough to order removal at exactly the minimum time (72 hours), which was a huge 5AM relief.   Felt pretty good after that.

Prednisone can cause swelling of the face (Cushingoid symptom), but goes away when discontinued or dosage reduced.    Avascular Necros from Prednsone can require hip replacement surgery (BTDT).

As to boredom - get him a laptop and a Netflix/Hulu/Amazon Prime subscription.   Loads of stuff to watch.

Ian also has a slight rash on one of his legs, like tiny pinpricks. 

Sounds like petechaie (generally caused by clotting problems like low platelets a/k/a thrombocytopenia) but I have no idea how this relates to the transplant.  Could also be something else.

[iolaire]

Re kidney- first congratulations - my cadaver kidney started up quickly but it took a few weeks 3-4 to get its function down into a normal range labwise. So from my experience they can be slow to become fully functional.  I’d guess mine was on ice for 15+ hours.

edit: I looked back on how long it took my creatinine to settle down to its final resting point with a cadaver kidney, it took from July 13th for my first set of labs to a lab result below with creatinine at 1.5 on August 29th, so almost a month and a half.  It took roughly a month to get to 2.  It took 2.5 weeks to get to creatinine of 3.8.  So at least in my experience there is a fairly long slope down to the final resting point.  This was with creatinine starting at 8.7 post transplant.  (No dialysis needed after transplant.)   

Re left arm. I have a left arm fistula. Prior to the transplant last year it had a large bump where the blood goes back into the arm. Since the transplant the part closer to my wrist started growing significantly to the point it’s much bigger than my old large bump. I fee like they did something to restrain the arm durning the transplant which impacted the fistula. Maybe your sons tingling arm is from something similar.

Since my bump grew so large in the past 1.5 years I’m having it tied off and removed this week.  I wanted to keep the fistula incase I need it but with this continued growth it was time. 

[Python]

Just found out why Ian's so bloated.  He's carrying 10 litres of fluid.  They've got him on dialysis to pull some of the fluid off now.  I'll have a clearer picture when I get up there later this evening (hospital's 40 miles away) so will update you all later.

[UkrainianTracksuit]

Hi there,

I was just about to type about a large "weight gain" or bloatedness being caused due to fluid. In a lot of our transplant literature, patients were warned about a substantial "weight gain" after the operation that could last for a few days. They push a lot of fluid into a patient to get that kidney into working order. I remember bags after bags of fluid being added to my regime. And if the kidney has a slow start to begin with, as you noted, it just builds up and sits there. I fairly thin but days after surgery, my family was still surprised how "big" I was. My cadaver kidney started working right away, passed a lot of into the catheter bag but it wasn't enough until the "fluid protocol" was over.

Secondly, in regard to the numbness, I had a SERIOUS case of this that didn't fully recover until 3 to 4 months post-op. In fact, a couple fingers have never been the same. I could use my arms and legs but I had no feelings in my hands. I couldn't grasp things or feel them in my hands. In my case, it was caused by low calcium levels (so, I received a supplement) and the irritation on the nerves from all the fluid I was carrying at that time.

It makes absolute sense that something could have been "upset" with the position of the fistula arm during surgery. My arm with the most fistula experiments still has some pins and needles going on. Good luck and take care....

[Python]

Hi there,

I was just about to type about a large "weight gain" or bloatedness being caused due to fluid. In a lot of our transplant literature, patients were warned about a substantial "weight gain" after the operation that could last for a few days. They push a lot of fluid into a patient to get that kidney into working order. I remember bags after bags of fluid being added to my regime. And if the kidney has a slow start to begin with, as you noted, it just builds up and sits there. I fairly thin but days after surgery, my family was still surprised how "big" I was. My cadaver kidney started working right away, passed a lot of into the catheter bag but it wasn't enough until the "fluid protocol" was over.

Secondly, in regard to the numbness, I had a SERIOUS case of this that didn't fully recover until 3 to 4 months post-op. In fact, a couple fingers have never been the same. I could use my arms and legs but I had no feelings in my hands. I couldn't grasp things or feel them in my hands. In my case, it was caused by low calcium levels (so, I received a supplement) and the irritation on the nerves from all the fluid I was carrying at that time.

It makes absolute sense that something could have been "upset" with the position of the fistula arm during surgery. My arm with the most fistula experiments still has some pins and needles going on. Good luck and take care....

Thank you so much for that.  Yes, Ian was on fluid drips - quite a lot of them the same day as the op and the next day too.  They took off 4 litres on dialysis this evening - which left Ian feeling totally wasted.  The kidney is still sleeping.  It is doing something but not producing much urine.  However, the bleeding is subsiding - the fluid in the catheter tube is now a dark pink rather than deep red.  He has a lot of swelling and bruising in his groin area, so much so he can't even wear his boxer shorts.  He's had to borrow some very loose hospital pyjamas which, although not high fashion have helped a lot and made him more comfortable.

The plan at the moment is they're going to take off 6 litres of fluid tomorrow, remove the catheter - because of the way he's made inside, they're going to have to sedate/knock him out to do it as otherwise it would be too painful.

Despite the kidney being very sluggish, they are hoping to let him come home on Wednesday but somehow I can't see that happening and I really don't think he's fit enough yet.

The numbness in his hand is slowly starting to get better.  He's got all the feeling back in his little finger, still has some numbness in the tip of his ring finger and his middle, index and thumb are still fairly numb.  He's worried about this because he is a violinist but I do think that will resolve itself.

Ian doesn't have a fistula - they did try one a few years ago but it didn't work.  Instead he has a tube running from inside his elbow, up his upper arm, across the top of his shoulder, and down to close to the heart - not sure of it's proper name but is called a Hero Graft.  It's a brilliant piece of technology that works like a charm.  Occasionally they can clot but is very simple to clear - only a day surgery case and doesn't take long.  It really has been a Hero for him and he dialyses brilliantly.  When he was on dialysis the first time 17 years ago, he had no appetite.  Once he got his first transplant, he almost instantly had a huge appetite.  He's a naturally thin man but loves his food now.  I thought when his transplant failed and he went back onto dialysis he would lose his appetite again but he never has and still loves his food.  Perhaps it's because dialysis machines are much more efficient than they used to be when he first started dialysis.

On the plus side, even though the new kidney is sluggish/sleepy the doctors are quite happy with everything and are confident the kidney will start working.  They have said it could take anything up to 4 weeks for it to work so they've arranged for Ian to dialysis for the next couple of weeks on a Monday, Wednesday and Friday, I think fairly short sessions.

On the plus side, before he was put on dialysis for a short spell the other day, they did a blood test and his creatinine had dropped so the new kidney is doing something.  Just wish it would wake up and do it's thing properly.

[iolaire]

  He has a lot of swelling and bruising in his groin area, so much so he can't even wear his boxer shorts.

I don’t know if this is what he is experiencing, but my private parts were basically black after the transplant and painful at times. That was another part of my body that I wondered if they used a strong clamp to hold in place at some unnatural position.

[Python]

  He has a lot of swelling and bruising in his groin area, so much so he can't even wear his boxer shorts.

I don’t know if this is what he is experiencing, but my private parts were basically black after the transplant and painful at times. That was another part of my body that I wondered if they used a strong clamp to hold in place at some unnatural position.

I know whatever's happened this time didn't happen the last time.  The new kidney has been put in on the right hand side, the last one on the left side.  In the words of the surgeon, my son's ureter is very long and has many torturous bends in it.  It's also quite narrow.  Surgeon said they weren't sure if they had a catheter long enough!  They'd put a little camera up to have a look so this is probably where a lot of the pain and swelling is coming from.  Of course, a lot of the bruising is starting to come out now.  The catheter is coming out today (it's 5.55am here in the UK - and no, I can't sleep just now because I'm worried about him) so I'm hoping that makes a difference.  Certainly, he'll feel more comfortable once the catheter's out - until he has to P - ouch!!!

Just wish the new kidney would wake up.

[Simon Dog]

That was another part of my body that I wondered if they used a strong clamp to hold in place at some unnatural position.

Google "crocodile sheers" 

[Python]

Update on Ian.

He got the catheter removed.  He was put under sedation for that.  He had a dialysis session and they pulled off another 3 litres of fluid.  Later today (it's 5.55am here in the UK) they are taking off the remaining extra 3 litres then he's coming home.

The docs are happy with him and are confident the kidney will start to work properly but the plan is for the next two weeks he goes for a dialysis session 3 times a week unless, of course, the kidney wakes up.  At the moment he is passing small amounts of urine but it is still quite bloody.

He sounded much brighter today when I spoke to him on the phone although he is still sore but that's to be expected.  He says the first thing he's doing when he gets home is having a decent cup of tea

[Python]

He's home and the first thing he did - had a cup of tea.

He's now back to his slimline self.  Just a case now of waiting for him to heal and wait for the kidney to fully wake up as it's still a bit slow.

[iolaire]

That’s good news!  Good luck.

[Python]

That’s good news!  Good luck.

Thank you.

It is good news and he's producing a lot more urine now although it is still quite bloody.

He has to go to the hospital tomorrow so he is going to ask about it then.  He may or may not get a dialysis session but I think they may pass on that tomorrow as he doesn't look like he's carrying any fluid now but they'll check him over and make sure all is OK.

[cassandra]

Sorry to be late to this thread but congratulations to you and your son with the kidney


         


Great to read the kidney is waking up.


Enjoy some extra drinks on me there 


Love, luck and strength, Cas

[Python]

Sorry to be late to this thread but congratulations to you and your son with the kidney


         


Great to read the kidney is waking up.


Enjoy some extra drinks on me there 


Love, luck and strength, Cas

Thank you.  I don't normally drink alcohol but I did have a wee dram (of vodka - hate whiskey) at New Year.

Hope everyone had a lovely Christmas and I hope 2019 is a great year for everyone.

[Python]

UPDATE:

With Christmas and New Year, sorry I've been slow in updating.

The kidney's working fairly well but not yet as good as it should be.

Ian got the stent out today but that didn't go well and he's home with a catheter and bag.  Seemingly, there is some scar tissue and they don't want his tubing closing up.  They have told him that, when the catheter comes out and the tubing does start to close up, he'll have to go to a specialist hospital in London for reconstructive surgery.

You can imagine, we're worried sick.

He's said himself that if this kidney fails, he doesn't want another transplant but will opt to stay on dialysis.

2018 was a really bad year for us one way or the other.  We were talking about the possibility of a transplant last year.  I said to Ian if he got a kidney I hoped it wouldn't be in 2018 given the bad luck we had.  So, he gets the new kidney in 2018 and there's been nothing but problems all the way through.

And now this.

Another problem he has is his haemoglobin is not coming back up so they're putting him on Epo again.

Has anyone else had problems like these?

[kristina]

Hello Python, I don't have any answers - unfortunately - but I wanted to send you both my good-luck-wishes and I do hope these terrible "hickups" sort themselves out as soon as possible. You certainly meet good specialists in London. Best wishes from Kristina.