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After Kidney Removal – Recovery in Hospital

Same day as operation:
My bed in the transplant ward was going to be ready at 5pm so my family had been told to give it until 6pm to allow me to be settled etc. It was actually 6.15pm that we heard my bed was ready and as I was wheeled into the ward I saw my family at the nurses’ desk and called out a “Yoo Hoo” and gave them a big wave. They expected me to be half asleep and out of it I think, and they almost fell on the floor so see me so awake, happy and smiling … hahaha ….I was taken to my room. Very nice room. Just two beds, I was by the window overlooking the little garden area which had a bird table in it. Shared the room with another lady (who had a kidney/pancreas transplant) and we had our own bathroom. My family were told that I needed to be settled in and it would be a little while so to go for a coffee and come back in say an hour.

I was helped off the trolley into my bed. I couldn’t quite manage this on my own as for some reason my right leg would not bend properly and had not much muscle power. This did by the next day correct itself. The first night I was going to be regularly monitored. Blood pressure sleeve was put on and automatically every two hours it would inflate and do its stuff! Gone are the days when the nurse had to come and do it. I was constantly impressed by all the advancements over the years since I had last visited someone or been in hospital myself. I had boot wraps on my calves over the thromboses stockings. They were wired up to some sort of pump and alternatively each one would inflate and deflate so massaging my calves and thus helping to prevent any blood clots (blood clots are rare, but can happen). A “clip” was put on my index finger which was wired up to a heart monitor. I had a drip in my left arm giving me fluids . In my right arm was another drip which was for the pain meds…

The nurse showed me how to use the pain med control. Each press of the button gave me one dose of painkiller. There was a little machine next to the bed that showed how many doses I had. Once I had the maximum amount then I could not use it again for 5 minutes. The machine gave me all the information regarding this. So even though I could self medicate the pain meds, I could not overdose on them. I had a buzzer if I needed to call a nurse and another control for the bed (to raise and lower the head or foot end etc).Β  The hospital bed was beautifully comfortable, wow .. plenty of support yet you sunk into it and you felt like it wrapped around you, rather like a memory foam mattress. It really was very good.Β  Pillows too … and no crinkly waterproof covers!! Shows how long ago it was that I was last an in patient! You also had the control that raised or lowered the different parts of the bed. Had fun playing with that later until I dropped the control on the floor and had to embarassingly buz for the nurse to come and retrieve it for me – one look from him as to the position I had got the bed in caused us both to laugh. Believe me, it hurts when you laugh! The table next to me had a jug of water. I had to drink quite a bit of water each day and the amount was monitored and then compared to the urine output in the bag attached to the catheter. Next to the bed was a swivel arm on which was a TV and telephone.

Β Once settled my family came and stayed for about an hour. They got me a couple of magazines. They also got me a TV card. Β£7 for 3 days – quite expensive but well worth it but thank goodness I was not in for a fortnight, unless there was a discount for longer periods. My son set it all up and activated the card. I must say it was great having this TV (with headphones if required), which also had internet and telephone. I Did not make any phone calls during my stay as it was quite expensive to make a call and even for a person to ring you on it – but once the card was activated apparently it automatically sent the number of the phone to my contacts (presumably the numbers I had entered on the form I completed when I was admitted?). The phone rang me later with an automated message to say it had informed my contacts of this phone number. Wow!! I was constantly being surprised. (I later found out that it was very expensive for people to phone in on that number, so advice from me is do not use the bedside TV/phone to phone anyone or for them to phone you. Use a cell phone or ask the nurse for the general ward phone).

A lady from the kitchen came to see what I would like to eat and I chose chicken and leak pie. When it came to be honest I was not really that hungry. The nurse said she could get me a “snack box” if I preferred. I didn’t actually know what that was but it sounded good, so yes! …. I had a choice of sandwich and had ham, then also in the box was an apple, bag of crisps, a snack bar, small drink of juice – can’t remember what else. I ate the sandwich and had the juice and the rest I saved and snacked on them during the night as I got rather peckish then.

Later in the evening the lady in the bed next to me had a bit of a setback and had to be taken to ICU. It was rather upsetting to witnessΒ . I believe she was okay though. Next day another lady came to share the room. They both had been given kidney/pancreas transplants. The first night I did not sleep much at all. What with the blood pressure going off every couple hours, which to be honest I found quite uncomfortable when it was doing it. When it reached maximum pressure my chubby arms really felt pinched. Then the bleeps from the heart rate monitor going off periodically and the foot compression pump thing. If I bent my left arm another monitor would start bleeping and a nurse would have to come and reset it. All sorts of little noises and things which I was just not used to. As I would doze off one of them would fire up and make me jump. I was tired but ended up deciding I would put on the headphones, watch TV and maybe would fall asleep in front of that. It didn’t matter really that I was kept awake, I was very comfy and the transplant ward was very quiet. I was quite content just laying there resting. I didn’t have any pain unless I moved then it was where the bikini line incision was to remove the kidney. I tried the pain med and it worked like a dream. Within a very short time (30 seconds or so) the pain was dulled and had I clicked again it would have totally gone. As I rarely moved though, I didn’t bother with the pain med. Also it did make me feel a little light headed which I was not keen on.

I had some discomfort at the back of my right shoulder that I felt each time I breathed in. Again this was normal. To enable the surgeons to rummage around inside me they puff me up with Carbon Dioxide, sometimes a little of the gas gets trapped up around the shoulders and can take a couple days or so to go. Bit of a nuisance more than anything else. Towards the end of the night I was actually getting used to the boots inflating and at times was not aware they had so would actually focus my attention on them to make sure they were still working! I am just so very thankful that there areΒ all these machines and pieces of equipment available to monitor me and help keep me safe. It was very reassuring in fact. The only time a nurse came was to take my temperature (or turn off the buzzer if I bent my left arm – lol!). I had my TV to watch (with headphones so no one else was disturbed). I think I also found it a bit hard to sleep as I was still on a high knowing that by now someone else had a working kidney. How wonderful is that. Doctors, nurses, surgeons, medical, non medical personnel – everyone on the two teams are just absolutely amazing to enable this to happen. I am in awe of them all. I did get to sleep periodically which was fine.

Day after operation:
Various people popped in to see me the next morning. I lost track of names I am afraid as most people I had not seen before and they said who they were before I could take it in. Everyone was just so lovely. Always smiling and a cheery hello. Thought I would use the internet and pop a few emails off. Nearly got as far as sending then got the black screen! lol. The whole screen froze and could not access internet or TV. Shortly after, the co-ordinator came in to see how I was. We had a good chat and I just mentioned the TV was not working now and why. She was brilliant! Got straight onto patientline and they rebooted there and then and I was back in business though have to admit I didn’t try to use the internet again – just in case.

A lady came and asked me what I would like for breakfast. I chose weetabix followed by toast and marmalade. I really enjoyed it. Long time since I have had toast and marmalade, in fact I am having it at home each day now I so enjoyed it.

A nurse came and said it was time for me to get out of bed. Not as easy as it sounded! Just laying in bed I felt fine. I did not feel ill (after anaesthetic etc), or feel any pain in fact I felt totally relaxed and comfortable. I hardly used any of the pain meds as I didn’t need them. When I did (mainly just testing how well it worked really), it worked but I also felt a bit light headed if I moved my head. So I didn’t use it much. Once I wanted to get higher up the bed and it did hurt in my lower abdomen area to do this, so a click or two on the pain med control and with slight discomfort I could then move up the bed. More clicks and there would have been no discomfort I am sure. Trying to get out of bed though was painful. You don’t realise how often you use your lower abdomen until it hurts! I was a wimp and laid back on the bed grinning sheepishly at the nurse as I had given up so quickly!

It hurt a lot around the lower abdomen where the incision to remove the kidney was made. So the nurse said to use more pain meds and get rid of the pain and we would try again shortly. I clicked the pain med button until I got to maximum dose and very quickly the pain went. Let’s have another go. The nurse stood next to me with his arm out in case I needed support. I held on to it and in one courageous effort hiked myself out of the bed …. oh boy! As soon as I was upright I felt so dizzy and light headed, it was horrible, I thought I would pass out. I steadied myself, and said I felt yuk and could he help me to the chair. Luckily it was only next to the bed so a couple of steps and I sat down in the chair. I felt not very nice at all (polite way of putting it). No pain though! lol. My nurse looked most concerned and asked if I was okay. I told him I just wanted to sit there and do nothing, but I was fine. He said he would come back shortly. Another nurse came in to change my urine bag which was nearly full. I turned to say hello to her and my head nearly span off my neck, lol. Oh I don’t make a good patient, that’s for sure. The dizzy feeling made me feel sick and I said that I thought I would be. She quickly got me a sick pan and I retched twice but that was all. I felt sure it was the fact I did the pain meds too quickly on top of the fact I had been laying down for over 24 hours. I just sat in the chair and closed my eyes and waiting for it all to pass.

Couple hours later lunch came, but I said I did not feel like anything. I was feeling not so bad now, but still felt “delicate”. The nurse said I had to eat as I had to keep my body going, it had to heal and get better and it needed food to do that. Very sensible advice, so I did have some food. I have to say, I did feel a lot better after that and very quickly got back to normal. So maybe lack of food also contributed. I still didn’t like the effect on the head of the pain meds though, it made me feel very dizzy when I moved my head, not very nice. The nurse said she would give me tablets instead. The drip was removed and the canula was closed off but not removed, just in case it was needed again. I was given pain tablets periodically. I was also given a dose of laxative! I was offered some the night before and I refused (mistake!) as I did not want to be suddenly caught out. No worries on that account, you certainly do get constipated which can be quite uncomfortable and the laxative is very welcome!

My weight when I came into the hospital was 89 KG … having an operation – then the fluid drip and all the water I had to drink does bloat you. Most people there got bloated. In 24 hours I went from 89KG to 93KG!! quite an increase. My hands were noticeably puffy I also felt bloated in the body. Fluids have to be got into body and they need to give them to me via the drip until they are totally sure I am drinking enough myself and that my body is processing it okay etc. I had to drink quite a bit of water which was fine as I normally would drink 1.5-2litres of water each day anyway. A doctor came to check me over and I mentioned the bloating. He suggested one more drip bag after the one I was finishing then to discontinue.

It was late afternoon now and I was drinking plenty of water and my urine output was fine and the nurse agreed to remove the fluid drip at the end of that bag rather than give me another one. She left the canula in though in case it was needed again. She wanted to remove the catheter but agreed to leave it until the morning. I was just worried that with the incision pain I would find it hard to get out of bed to go to the loo in the night and would have an accident.

Evening meal was really enjoyable. I had mushroom soup followed by chicken and mushroom casserole. Some orange juice and then a small tub of ice cream.

My family came and because I was no longer on the drips I was more mobile so Matthew went and got a wheelchair and they took me out into the little garden. Even at 6.15pm it was hot out there. We had a lovely hour in the fresh air. It really was a glorious day. The garden was just outside the window to my room and the nurse was in there and saw me through the slatted blinds and peered out and gave a wave ….

Just a few minutes earlier I had been telling my family how the nurse from recovery did say she was going to pop in to say hello at the end of her shift, but I think she had forgotten as it was now gone 7pm. Of course she hadn’t forgotten! She turned up and I was so chuffed she had not forgotten. We had a good hug and chat. I will miss her. After a long and no doubt tiring day, she still came to see me. How wonderful was that.

My son wheeled me back and my family left and I got settled in the chair for the evening. It was lovely not having a drip in each arm as I could move around without getting tied in knots or setting buzzers off. No more blood pressure sleeve or the inflatable boots! I watched Britain’s Got Talent then got into bed. I slept very well even though woke a couple of times when had temp checked by a nurse.

2nd day after operation and going home!:
Getting out of bed painful again but I did manage it on my own. Had the catheter removed but a “dish” was left in the bathroom for me to pee into so they could measure how much I was getting rid of. I also had a bowel movement. That was good as believe me, one of the main drawbacks is not having one! Had my weetabix and toast and marmalade for breakfast. I used to have that as a child sometimes which perhaps is why I am now so fond of it again. Someone came and checked my wounds. The top three keyholes had a lot of bruising around them. The guy said when they put the drain in there was a bit of a discharge. I imagine the drain went in immediately after the op and was removed before I came around as I don’t remember any drain being in me. But he was happy with the wounds. Just said to keep an eye on the bruising and to regularly check on them. I had large waterproof breathable plasters on them, so as long as no extra discharge that was fine. The nurse took some more bloods and said they will be sent straight away for testing and if all okay I can be discharged later that day. Probably early afternoon. The pharmacist came and went over with me the medication I would be sent home with. There would be panadol and tramadol for pain relief and lactulose and senna to help with constipation. She would prepare them so they were ready and waiting for me on discharge.

I was then advised by a nurse that they would move me to the Renal unit just up the corridor. Someone had just had a transplant and they were male, so the nurses had to shuffle people around a bit. I would go to Renal. The lady with me who would be in for around 10 days plus would go to another room in the transplant unit and then our room would become a male only room …. I collected all my belongings and then the nurse said to stay until after lunch. Have lunch in my room, then if I didn’t mind not having a bed I could spend the rest of the time in either the Transplant Day Room or the Renal Day room or in the garden. If the blood tests came back okay I could then go home. If for any reason they didn’t then I would have to be officially transferred to renal and stay there. Well that suited me great. I have to be honest and there was a huge difference between the Transplant Ward and the Renal Ward.

Lunch was lovely, again. Couldn’t fault them on the food. The transplant day room was full so I went into the garden for a while. While I was there two patients came, pushed by their relatives and spent some time in the garden chatting with me. They were both resident at the hospital and with failed transplants behind them were back on dialysis.

It was late afternoon now and I wondered when my blood results would come back. I went into Transplant and asked at the nurses desk. They checked and not ready yet, but should be soon. The nurse came and found me in the day room and yes, blood results all okay I could go home. My discharge papers would be done and wouldn’t be long now. I telephoned my family to come and collect me. I was given my bag of medication and discharge form. I thanked everyone for taking such great care of me. I didn’t bother getting changed into day clothes. Apart from the fact I was still very bloated, I knew getting dressed would not be that easy a task. Also what was the point, I would only change back into nightclothes as soon as I got home. I quite happily left the hospital and walked through the car park in nightdress and dressing gown and slippers.

Was good to be home!

Β 

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69 Responses to “My Hospital Stay after Kidney Removal”

  • Dixie Wiest:

    Cool. Thanks for writing this. Its always great to see someone help out the world.

  • Paul:

    Hello there, I discovered your blog by way of Google even as searching for a similar topic, your site got here up, it appears great. I have bookmarked to my favourites|added to my bookmarks.

  • ismail:

    Thanks for such a great site with all the info. Been going through it for a couple of nights now and today was the last day for all the tests. Hopefully all should be ok. To say i’m not afraid would probably be a lie, but the emotions are the worst.
    Just like to say thanks, so informative.
    Ismail

  • Diane:

    Hi ismail,
    I hope my site helped you some. If you would like to have a chat and talk through your emotions/feelings then would love to try and help. You can contact me on donor [at] livingkidneydonation.co.uk.

    All the very best
    Di
    x

  • ismail:

    Hi Diane
    All tests have now been done and will have to see the nurse next Monday and she will go through the results with me and my wife to whom i’m donating. Everything seems ok and hopefully we will get the go ahead. Just like to know is it normal to become emotional when you think about things which may happen to either me or my wife. [Can be very embarising.] Have’nt really talked to anyone, don,t really want people to know what i’m doing. Writing this is sometimes difficult.
    Anyway back to next Monday, i’ll let you know what happens with the nurse.
    Thanks a lot,
    Ismail

  • Diane:

    Hi Ismail,
    Thanks for keeping in touch. You know, it would be abnormal not to get emotional and it really is nothing to be embarassed about. It shows you care deeply!!! If you want to talk to someone who understands, then you are more than willing to chat to me. My email I gave in the post above. Even if you just want to talk and not have me respond then that is fine. Sometimes it helps to just talk about conerns privately.

    Look forward to hearing what the nurse says. Can you say which hospital you are attending? understand if you would rather not.

    All the best to you both,
    Di
    xx

  • Richard Heaybourne:

    What a fantastic tale to follow!

    I am in the process of getting a kidney from my cousin, fear of him not recovering well/being in pain plays on my mind whenever I think about it. Howeer your story makes me a little more confident in his recovery and return to a normal life.

    Thanks

    Richard

  • Diane:

    Hi Richard,
    Whoo hoo … about to get a kidney, how fantastic and how wonderful of your cousin to offer his to you.

    Yes it is a worrying aspect for recipients – the affect on the donor. People seem to react differently to the donation. I did not really have much pain/discomfort at all and what I did have was very manageable. Some others I know had no pain at all, just a bit of discomfort and others said it did hurt for a few days after but all of it was manageable. What you have to remember is that donors are not ill. We are in great health and fitness so really all we are having to recover from is firstly the anaesthetic and then an incision. We are not like recipients having to go through an operation when our health is at a low point. As a recipient you will worry, that is only normal but do just remember we are not recovering from an illness or an operation to “fix” us. So really it is just the incisions we are recovering from. I would far rather go through donating a kidney than going to the dentist or going through childbirth again!!! Believe you me – both those are far far worse in my opinion especially the latter!. Lol ….

    My best to you both and thanks for posting.
    Di
    x

  • Diane M:

    My brother is just undergoing tests to donate a kidney to his son who is 24. This is an amazing and natural thing to do but I am still worried about both of them. It is reasuring to know how other people have got on and positive thoughts.

  • Diane:

    Hi Diane,
    I hope all the tests are fine and donation date not too far away. My thoughts with you all. Yes I can imagine how worried you are for both of them. Fortunately operation techniques are so much better than several years ago and I think this is why people are not so concerned about donating.

    All the best to you.
    Di
    x

  • Chava:

    Googled “bowel movement after kidney removal” and arrived here. It didn’t help with my concern but it definitely was therapeutic to read this account, helping me with my emotions as I recover now in a foreign home from my kidney donation surgery last week. I traveled across the country for this and am prohibited from flying for 2 weeks. I think about my hospital stay nostalgically, missing the moving beds, the attention from the docs n nurses, the food in easy reach, the chair in the shower..

    I want to wish lots of luck to all you potential donors and recipients. I’m available thru email for anyone who wants to vent, ask, cry, share, comment etc. During evaluative testing, some cysts of large proportions were discovered. Miraculously they were able to remove them – during the kidney surgety- before they got bigger and G-d forbid, burst. So I actually am now recovering from double surgery. And I agree with Diane, relatively speaking, the sacrifice is so minor..

  • Diane:

    Hi Chava,
    What are your concerns re bowel movement?

    So good that they found the cysts and were able to remove them. So not only were you able to help someone else by giving them one of your kidneys, you also got a bonus in having the cysts discovered, how great is that!! Certainly we get a good health check when donating!! I had a small scar on my kidney which they say could have been due to a childhood infection. then later they thought maybe nt a scar but a small cyst. Cysts are quite common apparently!! Though not sure about big ones, lol!! Not even sure what causes them. Must do some research.

    Glad your donation went well. If only we had more than one spare.

    All the best
    Di
    x

  • Thanks for responding!
    My concern was wanting to know how much after surgery is normal not to have a bowel movement. Obviously I would not rely on blogs for medical advice but figured it would be helpful to read nonetheless.

    Yeah isn’t it crazy that everyone who does it has the same regret — that we can’t do it again? πŸ™‚

  • Diane:

    It is VERY normal not to have a bowel movement after surgery. Someone once told me that there is something in the anaesthetic that stops part of the bowel from working. Now I am not sure if that is on purpose to stop us from emptying bowel during surgery or just an unpleasant after effect, lol. My hospital on the first night offered me a laxative, which I refused. I got laxative mixed up with enema (is that the correct spelling?). So last thing I wanted was to “go” in the middle of the night. However, I now wish I had taken that laxative … I took it the next day and eventually “performed”!!

    For some people it can be a prolbem and they wont go for days. I know I was told that my hospital stay would be made up as follows:
    Day 1: operation
    Day 2: out of bed get used to doing things unaided
    Day 3: Can go home but only if I have eaten without being sick, peed and pooed!

    You do need to take laxative. I was given two medications (both available over the counter without prescription) one was a tablet to help me go, think that was Senna (something like that) then I was also given a liquid to drink which was to help line the bowel etc to aid an easy “movement”.

    I had to keep taking the laxatives for about 3 or 4 days but I did wait each day to see if I could go on my own and when I couldnt I then took the medication at night so it then worked and kicked in for next day. then would see what the following day was like, so sort of alternated taking it and not taking it until I was okay to go normally.

    So to answer your question, yes it is very very common to not have a bowel movement, but suggest you do take a laxative – at least ask your medical advisors exactly what is best to take for you.

    Okay I am going to have to go now and wont be able to respond to any further posts until Monday evening as lending my laptop to a friend who is here waiting for it.

    Hope your recovery goes well and please do post back if you like and I will get back to you when I can.
    Di

  • Well Tuesday was surgery, discharge was Friday and it’s now Saturday night and still nothing. I’ve been taking stool softeners twice a day.
    ( Btw I love how suddenly I have no inhibitions re personal body functions. The other day, the surgeon walked in to my hospital room with a group of about 10 medical personnel, and they all cracked up whwkni responded to his “how are you?” with a rapid “how are you? How is your bladder? What color is your urine? Did you pass gas yet? Any bowel movement??” Oy it was a great moment :D)

    Well I’ll be looking forward to your eventual response. Sorry I’m blabbering so much here. Just so thrilling to discuss with people who “get it”.

    And kudos on your laptop donation πŸ˜‰

  • Diane:

    Hi Chava
    Well typing this from Orlando. Would say from sunny Florida but had some great thunderstorms, lol! Having fun though. About to hit the parks in an hour,so second breakfast coffee before getting ready.

    Hopefully by now your body is behaving itself and performing as it should, lol. I know we are given not only stool softener but also something to make us go.

    you keep blabbering, no apologise needed. I call it rambling … lol and I do a lot of that. Let me know how you are now doing?
    Di

  • Improved (nearly perfected) in that area, but now I wanna know why I’m waking up at least once throughout the night to pee. Is my kidney trying to prove its ability to multi – function as two??

  • Diane:

    lol … glad you are nearly back to normal. You could be waking up to pee ‘cos you are drinking more? Or drinking nearer to bedtime than before?

    Di

  • Hazel:

    Hi Diane, first of all thank you for the blog it has been a constant source of information for me over the past 8 months. I am currently residing in South Africa and decided to donate a kidney to my brother in the UK as his is deteriorating a rapid rate. This kidney was donated to him by our mother 11 years previously. I had initial tests done here in SA and results were sent over to England for further checking. I was told I was positive crossmatch and therefore could not donate directly to my brother. After many tears and much emotion, my husband and I discussed the other option of paired/pooled donation and he said we had come this far we may as well continue and so in April I flew to England for all the “personal” tests. Thanks to your blog I read up on everything that I was going to go through and I went through every procedure I remembered how you described it and felt fully prepared. Even though all the nursing staff were informative, attentive and caring it was nice to prepare yourself beforehand for everything. I passed all the tests and my brother and I were placed on the pooled donation list. I was back in SA for one week when I was contacted for the first run. Unfortunately, we did not receive a match. In the middle of September I was once again contacted by the transplant co-ordinators and asked if I was still happy to be considered for the next run on Oct 1st. We were contacted yesterday and we have matched with another donor and recipient, so two people are going to receive kidneys and not have to live their lives on dialysis! Thank you once again for such a lively informative and enlightening blog and thank you for saving a life.

  • Diane:

    Hi Hazel,
    Thank you so so much for your comment. It means a great deal to know this site has helped someone as I know from my own personal experience it can be a bit loney and scary at times. Also what fantastic news about your match!!So soon also, paired/pooled can take a long while sometimes with the runs not happening all that often. So at some point then you will have to come back to the UK. I would love to hear how you all get on. Which transplant unit in the UK? if you don’t mind me asking?

    How very exciting for you all and also a bit of a nervous time as well I suppose. I think this is a good side to donating to a stranger for me in that I had no emotional involvement so less stress/worry!!

    Please keep in touch,
    All the best
    Di
    x

  • Lisa:

    Hi Diane
    Thank you so much for putting my mind to rest through your site.

    I am donating to my sister in November and the ‘reality’ has just hit home that it is actually going to happen!
    Finding it impossible to discuss how ‘they’ are feeling with husband and kids so feeling quite selfish.

    I have never had an op before or been in hospital, so reading your experiences have been a great help.
    Bit of a silly question but do you think I can I get away with wearing pj’s rather than nightie when in hospital? I can’t seem to find a decent length nightie that doesn’t look like something my granny wore! Lol
    Thanks
    Lisa

  • Diane:

    Hi Lisa,
    It is a scary thought isnt it. I was fortunate in that I had been in hospital before and had an operation before, so sort of knew what to expect. One little tip which a nurse told me once, which seemed to work perfectly for me. When I woke from the anaesthetic, I felt physically fine but had an exceptionally dry mouth, was hard to talk, no saliva. A drink of water or tea even does wonders. You will be de hydrated and although you will have a drip to combat this, it is not the same as actually having a drink. Drink it slowly, sipping it. It sort of got the saliva glands working again and the dry mouth went.

    Anyway, that is off topic. Re your PJ’s … Okay you will need to think on these points.

    Firstly you will live in the hospital gown the day of the operation. You wont be getting out of bed at all, but it will give you time to assess your situation! So you wont be needing any of your clothes on that day.

    The day after the operation tends to be the day when you gain your confidence and learn to get in and out of bed, sit in a chair, get dressed, go to the bathroom etc etc. As you have probably read from my account of the first full day …. getting out of bed was the first hurdle. You should have a soft chair with arms next to the bed for you to then get into. Depending on how you feel, you can then ask the nurse if they will just oversee you putting on your own pj’s (or a relative I suppose if one is there). Bearing in mind you could very well still have the catheter in, you may need assistance in order to get the pj bottoms over this. So make sure your pj’s are baggy/ish ones with room for this to happen. You may not need help but in bending down to put them on etc, might be a bit hard to begin with.

    The final point I can think of is where the pj elastic goes. If you have keyhole surgery, the main incision will be bikini line. then you will have a few smaller ones sort of semi scattered over one side of your abdomen. You will of course have them covered with wound dressings but of course you dont want the elastic to rub or put undue pressure on. You should be okay.

    So I would say yes you can as long as you are aware of the above points. The day after the operation the catheter should come out at some point. They do need it to stay in for a while as they need to monitor the amount of urine you are now passing compared to fluid intake and they can quickly check the colour. Also be careful when having a bathroom visit. Make sure the pj’s dont drop too far or you will have to bend to pick them up. Bending is what you dont want to do, lol!! not if you can help it, just yet!

    So as long as they are not too tight around the waist and legs you should be fine. Heck men wear pj’s don’t they!

    I have to say I wore a dressing gown over my nightie (just felt wierd to me walking around in a nightie with nothing underneath!) So your alternative could be to get a pretty dressing gown to wear over the best nightie you can find? But in any event I don’t see why pj’s should be a problem.

    I would like to just say something re the fact you cannot discuss with family how “they” are feeling. This is quite normal. Someone I knew felt the same way and they said they sat their husband down and explained that to him and asked him to be her voice with the children and to know that she was dealing with her own feelings and was hard to discuss theirs. She did say that if necessary she would get them all to see the coordinator who would help talk everyone through their feelings.
    Not sure if I am out of order saying that.

    When you come out of hospital and go home. Please do not try and be brave. If it feels uncomfortable to do something, get someone to help you. If you feel tired, it is your body telling you it cannot cope with you being awake and/or on the go plus healing – and healing comes first, so you lay down and rest and/or sleep, even if during the day. There will be plenty of time afterward to talk to your family and explain how you felt. And believe me, they will feel so very proud of you.

    I wish you and your sister all the very best for November. If you want to post back at any time, please do, would love to hear from you. Alternatively if you wish to chat off this blog then contact me via the “contact” link top right of page.

    All the best
    Di
    x

  • Chava:

    Lisa, I did so much research bout clothes for hospital…couldn’t believe I would be in a state of not caring as everyone was predicting…packed some cardigans, loose skirts n comfy pants just in case … wore nothing but the gown for three days. Did decide though that next hospital stay I’d make sure to dab on a bit of makeup πŸ˜‰

    Good luck with the surgeries! All your fears, insecurities, anxieties and discomforts are normal and permitted!

  • Lisa:

    Many thanks Chava and Diane.
    Spent most of the night reading your site Diane and feel much more confident now that I know what to expect.
    off to southampton now to get some new suitable clothes, good excuse for a new wardrobe as I have had to loose 4 stone to be able to donate.
    I think I might suggest hubby talks to co ordinator at the hospital as she is very good.
    Will let you know how it goes
    Best wishes
    Lisa

  • Diane:

    Okay Lisa … you go enjoy a good spend up, lol. Oh and very well done on the weight loss!!!

    Look forward to hearing any updates.
    All the best
    Di
    x

  • Chava:

    Ditto! That’s amazing!

  • Hi Diane, Hazel again Date for transplant is 12 December and have arrived from South Africa and undergone final crossmatch and pre-op. I am very calm and ust happy that everything we have worked towards in the past year has come to fruitition. Reading through your blog again to reaquaint myself with post op details. Have not seen my transplant co-ordinator as she has been off work, the only concerns I am having is I miss my husband and children immensly, especially being without them over the holiday period. Not knowing how long I wil have to stay in England even though I have been told the surgeon and pharmacist will try to work on a treatment programme to try to get me home on a longhaul flight soonest. So happy and excited that my brother and a stranger will be off dialysis. My niece and nephew will at least have a few more years with their Dad. Thank you once again for all the important insight from a donor perspective. Have a wonderful and healthy holiday period.

  • Diane:

    Hi Hazel,
    Gosh 12th that is Wednesday – the same day the removal comapany delivery my furniture to my new house – a day I will remembr and be thinking of you all big time!!! PLEASE please let me know how things are afterwards.

    Yes you must miss your family so much and especially as so many miles away. it is times like this that we can be thankful for modern technology such as the internet and mobile phones!!

    Hope your recovery is quick and you can get home as soon as possible.

    All the very best … you are all in my thoughts ….
    Di
    xx

  • Josh:

    Thanks my question is two weeks after my wife’s kidney removal it seems she is going to the bathroom ( pooping ) about after every time we eat a meal sort of in normal for her.. She used to only go two three times a week but seems to be more frequent now. Thank you!!

  • Diane:

    Hi Josh,
    I really don’t know. I have not heard of that before, but not to say it is not “normal”. I strongly suggest you contact your wife’s nephrologist or coordinator at the hospital and ask them.

    What I do know is that our body goes under a “shock” when it has any operation, let alone a major one of kidney removal. I know that I go about two time a day and that is normal for me. Going two or three times a week to me sounds …. not quite enough! lol …. although I know it is quite “normal” for people not to go everyday. It could just be her bowels have settled down into a new routine. Was she given laxatives after the operation? could be they have done their job and maybe “cleaned” her out a bit so she now goes more often.

    I am not medically trained and have not had this reported to me before. Not to say it is not normal. Only way you will find out is ring the hospital and ask them. I say the hospital and not your normal doctor because GP’s don’t know that much about kidney removal or after effects whereas the hospital are the experts.

    Please let us know what is said as could be useful to any one else in similar situation.

    Have a great New Year
    Di
    x

  • ismail:

    Hi Diane,
    Sorry I have’nt been able to speak to you in some time as we have been busy at work and also we have been having work done at home. Zubeda my wife wants to get all the house perfect before she goes into hospital. Anyway I thought i’d just let you know how we are getting on with all the tests. So far so good, all my tests have been done and all is ok, in fact I was told that at 48 my kidneys are working perfect. Also it may be possible to donate direct to Zubeda if we can’t get a better match through paired pool. This month or next we will both have to go over to Manchester to see the surgeons and then be put on the transplant list all being well.
    One thing I did’nt expect when I decided to donate was all the waiting and all the tests. I just supposed it would all be done within several months. No doubt they know what there doing. Zubeda’s egfr is now at 11% and fortunately still not on dialysis and in general her health is still quite good. [but still can’t help but worry for her]. We’ve to see the consultant this Friday, hopefully all will be well as we’ve checked her results online and it looks ok to us.
    Hopefully i’ll speak to you soon and let you know how we get on once we’ve been to Manchester. Wonderfull website thanks a million.
    Ismail.

  • Diane:

    Hi Ismail,
    Thank you so much for letting me know how you are getting on. I had wondered occasionally but never like to intrude by contacting people direct.

    Be good if you could donate direct but however Zubeda gets her kidney it will be the best available for her.

    Oh yes!!!! the waiting and the tests and the *patience* that is required!! I often wonder whether the two words – patients and patience were tied together … lol

    Look forward to hearing how you get on at Manchester ….
    Both in my thoughts ….

    All the best
    Di

  • James:

    Hi Di,

    I have just recently gone through the Donor process for my brother, (he is doing great 2 weeks in). Thankyou for your informative blog as at times I thought I was the only one who understood what I was going trough. Keep up the good work many thanks.

    James x

  • Diane:

    Hi James,
    Wow how fantastic and so pleased that your brother is doing great. I expect he had forgotten just how good he could feel. Pleased the blog has been of help – yes it is very difficult to get non donors to understand exactly how we feel and what emotions we go through during this process, so it is indeed good to know we are not alone in this.

    Hope recovery continues to go well for both of you.
    Di
    x

  • Katie:

    Hi Diane
    I just ran across your ongoing conversations while trying to find a few answers. I am planning on donating my kidney to my father in Oct. However I live about five states away and will fly to and from the transplant center. It seems you were released from the hospital on day two (is that correct) and at what day were you able to leave the “transplant area” if you had to travel? I have been told that the transplant team has to evaluate me prior to heading back home…that this can be 1 to 2 weeks before I am ready to leave the area. Any thoughts? Thanks, Katie (Spokane, WA USA)

  • Diane:

    Hi Katie,
    A lot depends upon your airline also. The big fear after any surgery is a blood clot and depending on the length of flight will also determine how long after surgery you can fly. Now that is just the airline. You need to ask the airline about both keyhole and open surgery (unless you already know you are having open) as even if keyhole surgery is scheduled, it won’t be until the surgeons have you “opened up” that they can then change to open surgery should they find the kidney’s vessels more complicated than scans etc have shown, and so then decide to do open, which of course requires a much longer recovery time. Also you will need to be able to move fairly freely in the aircraft. The first week I found very debilitating as far as being so tired and limited as to what I could do as far as pain.

    I had keyhole surgery Thursday morning and was back home Saturday. But I was only an hour drive from the transplant hospital by car. Having said that I could still have left even if several hours away by car as long as I had some medical centre near/hospital where I lived.

    I don’t think a week is unreasonable if you live a very long way way, which you do. Should something go wrong when at home, would you have easy access to the correct medical personnel to treat you and operate if necessary?

    Some hospitals here in the UK get you to come back at around week 2 or 3 for a check up (mine was week 6) before leaving it for the annual check up. if it was not convenient for me to attend the 6 week check up because of the distance away I lived, then a local transplant hospital would have sufficed for the check ups.

    All I can say is speak with the airline first (unless you have already πŸ™‚ ), see what they say. Certainly I don’t think a week would be unreasonable when living a long way away. Me leaving so soon after the operation put me in the 23% of people who did at my hospital. Most left on day 3 or 4 due to one reason or an other.

    A friend of mine in USA donated a few years ago but she came home after a week. The doctors did want her to stay (she lived in Oklahoma and donated in New York) and she had to sign a waiver I believe. She also had a travelling companion who went to NY with her and so could accompany her home.

    sorry cannot be more helpful, but hopefully someone else reading this can be more precise.

    October is not that far away now πŸ™‚ I wish both you and your father all the best xx
    Di

  • Chava:

    I had my surgery in New York and flew home to California about 12 days later. My followup was supposed to be 2 weeks after surgery but I requested an earlier date so I could get home for holidays.

    Parenthetically, as soon as I got to the airport in NY I already felt much better.

  • Katie:

    Thank you both, Diane and Chava!
    Our center is in Salt Lake, UT and they too require a support person to be with me, the donor, the entire time. I am (of course I say this now…)giving myself three days in the hospital and seven days out of hospital but still in SL. I am going to cross my fingers that if I book a round trip flight and have to change the date by a day or two that that will be less expensive than booking last minute.
    It does seem that most donors are ready to leave the hospital between 1-3 days. Our Tx center does require me to be seen by the surgeon before leaving SL.
    I will have to keep you posted!
    Thanks again,
    Katie

  • Diane:

    Finger crossed it all goes according to plan!! Yes please do let us know.
    All the best
    Di
    x

  • Tammy Miles:

    Hi Diane,

    Came accross your blog on google whilst looking for recovery times as couldnt remember how long till i was allowed to drive again. I have just recieved my op date and was great to read your experiance. Ive not really had anyone to talk to that understands what im doing. Which hospital was you at if you dont mind me asking? πŸ™‚ x

  • Diane:

    Hi Tammy,
    I donated at The Churchill in Oxford. Driving depends on recovery. I was told to wait at least a week and to test out my “skills” before going on the road. i.e. sit in the driving seat, seat belt on and pretend to reverse, so I would be turning round in my seat. Also to do a mock emergency stop, slamming on the pedals etc. Shouldn’t feel any pain!!

    Who are you donating to?
    All the best
    Di
    x

  • Tammy Miles:

    Thank you, πŸ™‚ I dont know who will recieve my kidney, like you i am an altruistic donor πŸ™‚ I’m going to be having my op in manchester, I hope they are as nice as the hospital you was at πŸ™‚ x

  • Diane:

    Hi Tammy,
    I have taken the liberty of removing the date of your operation πŸ™‚ the privacy of the recipient is paramount as this is an altruistic donation i.e. to a stranger. with so few donors, giving even the month of the donation let alone the date could lead to the recipient being identified. Your hospital should have told you about not giving anything away – tap on the back of their hand, lol :). What the NHSBT suggest people say is that they donated “earlier in the year” or “last half of the year”. Or if the operation is yet to happen to really just say “in the near future”, but the actual date must not be made public. So I hope you dont mind that I have edited your post and removed the date.

    Manchester is a great hospital and you will be well looked after there and the people are lovely πŸ™‚ Not heard about their food, lol … I know I loved the hospital food in the Churchill and was greedy piggy and had seconds πŸ™‚
    All the best, keep in touch
    Di
    x

  • Tammy Miles:

    Ah right I understand, they didnt mention anything to me… I feel they should of tho. πŸ™‚ Thank you and I will πŸ™‚ x

  • Michelle:

    What is the correct way to take a shower after surgery. My incision was in my navel..

  • Diane:

    Hi Michelle,
    Had a search through my notes (amazing how the memory fails after a while πŸ™‚ ) and found this:

    1) Do not shower for 48 hours after keyhole surgery.
    2) Have a shower rather than bath unless you can guarantee keeping the incision out of the water i.e. it must not “soak”
    3) Remove any dressing before you have a shower, unless your surgeon or nurse gives you different advice.
    4) Some dressings are waterproof and can be left in place.
    5) Don’t use any soap, shower gel, body lotion, talcum powder or other bathing products directly over your healing wound.
    6) You can let the shower water gently splash onto your healing wound. However, don’t rub the area, as this might be painful and could delay the healing process.
    7) Dry the surrounding area carefully by patting it gently with a clean towel but allow your wound to air dry.
    8) Once the wound has “aired” and the surrounding area and incision itself is totally dry, carefully examine it for any unusual redness (potential infection) or leakage (speak to nurse or doctor if concerned) then replace the dressing and carefully get dressed.
    9) if you had waterproof dressing and kept that on during showering, you could replace it as the wound can be checked at this point.

    I cannot remember where I got that from but it is what I followed after my surgery. Having said that, I did find it difficult getting in the shower, which was one on the wall in the bath, as lifting my leg to get it over the side of the bath was painful. I decided not to then have a shower in case I had an accident or had difficulty getting out the shower, so for about the first 5 days I had full body wash downs instead, only showering once I was happy getting in the bath.

    Hope that helps
    Di
    x

  • Natasha:

    Hello.
    Just reading through this site after quite a long time after viewing it last. Well it’s over 2 years now since I donated, I don’t regret my decision to donate and glad I done it. I see some comments that some people feel better for donating but I honestly have to say I feel no different, I don’t even feel as though I donated. I wish I felt better for donating so that could give me the encouragement to tell more people and perhaps they themselves would consider putting themselves on the roller coaster to see if they could donate and help someone less fortunate than themselves.

  • Hello again Di

    Just thought I’d let you know that the time is almost here at last – I am booked in for Oct 16th to donate to my younger brother. He is not at all well now but not on dialysis which he should avoid. I guess that’s where he would be if the transplant was not booked.

    I’ve been reading again all about your progress from beginning to end. I read it all avidly when I first volunteered but I must say I had forgotten what a wealth of really useful practical information you have here for donors. I still haven’t found another site to match it.

  • Claire:

    Message for Tammy who posted on Aug 13th – I will be having my op in Manchester too so let us know how you got on (or maybe Di can give you my email address..?).
    Thanks Di for such a fantastic website; I find myself re-visiting it often as a proceed through my altruistic donation process.
    And thanks to everyone who has contributed their experiences too!
    πŸ™‚

  • Diane:

    Hi Claire,
    Tammy should get notified that this post has been made. If she hasnt responded in a couple of days, I will forward to her.
    All the best, thinking of you
    Di
    xx

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