Archives

My Recovery at Home

I was allowed home 2 days after the operation. The journey home was okay. Couldn’t really avoid all the bumps and potholes in the road so had to support my abdomen during the journey. It was good to be home. Own bed, own bathroom etc. Couldn’t keep my eyes open so had not been home for long before went up to bed. Now of course, my bed does not raise up like the hospital one. So with great effort I got onto the bed at a sort of an angle and then couldn’t move, lol. The pain in my abdomen was intense. Oh well – I just stayed there on the bed sort of laying across it – and went to sleep. Woke about 5am feeling refreshed and wanting the bathroom, but quite a battle to get out of bed. took around 10 minutes trying to work out the least painful way.

Decided that the next night I would sleep with lots of pillows behind me so my upper half is already raised, just like the hospital bed was. It would then be much easier getting in and out of bed as would not have to use my abdominal muscles as much.

In myself I felt very well. Still bloated which was uncomfortable rather than anything else so hopefully the extra 4 kilos would go soon. I got tired very very quickly. In fact I had only been up for around 3 hours and was walking back from the kitchen with a cup of tea and almost dropped it as I found my eyes closing as I walked. The tiredness just came out the blue!! I know I was told I would feel tired, but I was not sure if that meant bodily tired i.e. no energy, or tired in wanting to go to sleep. Now I know. I had to go back upstairs and get some sleep. I arranged the pillows so they were like a backrest. I have a memory foam mattress which is bliss. I could get into bed a lot easier now with little pain. I got a good hours sleep and woke refreshed. Around 3pm the same thing happened and I found my eyes just would not stay open, so got another hours sleep. I must say the first four or five days was like this. Suddenly feeling sleepy when I had only been up a few hours. I didn’t fight it as I knew my body needed the rest. I was also going up to bed around 7pm or 8pm in the evenings. I actually felt more comfortable laying propped up in bed than sitting in the chair downstairs, which squashed my abdomen up a bit and was uncomfortable. I had very good night sleep for the first week, most nights not waking at all until the morning. Pre operation I would wake about 3 or 4 times needing the bathroom. I also found that sleeping with my upper half propped up I could breathe a lot easier as well which I am sure aided a good night sleep. In fact I have continued to sleep propped up and find it much better than laying flat in bed. When I have saved the money I may just invest in a bed where I can raise the back up. I am surprised at the difference in quality of sleep I get this way.

The first week was obviously the hardest as I was not allowed to do much and I felt tired so quickly throughout the day and there was a bit of pain when I walked or used my lower abdomen. For some reason the first couple of days I forgot about the pain medication. Duh! After that I took it and made sure I took enough. Although I still had some pain, it was not troublesome. In fact I was quite pleased I had a little bit of pain as it reminded me to take things easy. I enjoyed being spoilt and looked after the first week!

Some people get no pain at all. I believe the only reason I got pain was because I am overweight and the pressure of a tummy “overhang” on the incision area coupled with gravity pulling down on it when I walked, just aggravated everything! If you picture walking with a bowl of jelly ….?? Yup I think you have the picture!  If I held in my abdomen muscles which then supported the incision area, then I had no pain at all when I walked. Of course remembering to take the pain medication would have helped!

Once 10 days had passed then I noticed a quicker improvement. I was not sleepy during the day any more, although I did physically get tired. It was quite some time before energy levels restored themselves. Incisions were healing nicely and everything was just great.

I also heard that the recipient was doing excellently well! That is the best news of all. Wonderful!

Recovery continued and things are great.  It has been a while since the evaluation finished in October 2009  and some time since kidney donation, so I hope I have remembered everything, I did make notes at the time but not always. Anyway I hope this blog gives a good insight into the process of becoming an Living  kidney donor and the actual donation process itself. I know if I had another spare kidney I would do it all again without hesitation.

Share

138 Responses to “Recovery at home after Kidney removal”

  • Zoe:

    You have given a kidney to a stranger – How amazing! What a wonderful person you are. I have spent an hour reading through your blog and am so amazed. Why do we not know more about being able to give a kidney. I did not know you could. It was like reading a TV series, I was glued to reading your next post. You do not say much about the person who got your kidney? Were they in the same ward as you?

    I loved reading this.
    Best Wishes
    Zoe

  • Diane:

    Hi Zoe,
    Thank you for reading my blog, I appreciate the time you have taken to do that.

    The person who had my kidney was not in the same hospital. I donated to a stranger, they call that Altruistic or non-directed and it also means you do not get to know the person. You stay anonymous to each other. The recipient can write a letter of thanks, say, to the donor. But it has to go through intermediary at the hospital and then forwarded on to me. Likewise if the donor decides to respond, it has to go through intermediary again and no personal details can be given such as full name or address/location etc. It is all to protect/respect the individual people’s privacy etc. The hospital the donor is at can enquire as to how well the recipient is after the transplant and you can be updated as to how they have responded. I was told that my recipient was doing excellently which was fantastic news.

    I may in a month or so post again and give my thoughts on the whole experience.

    All the best
    Di

  • Zoe:

    How do they get the kidney to a different hospital then? isn’t that dangerous, doesn’t the organ shrivel up or something?

    So what did your recipient say in their letter to you? I cant imagine how it must feel to get an organ from a live person. Do you know you are missing an organ? Can you feel any different without your kidney.

    Best Wishes
    Zoe

  • Diane:

    Hi Zoe,
    There is a process by which organs are preserved for as long as it takes to either have them driven, flown etc to the required centre.

    I am sorry but I cannot disclose anything regarding the recipient and any communication that may have taken place between them and me. Apart from which I never get to know their name anyway, and they not mine.

    You know, I feel no different with only one kidney than when I had two. The strange thing is, that any discomfort or pain I had after the operation was localised to the main incision – and then with more pain meds I could have got rid of that but for whatever reason kept forgetting to take the pain meds .. duh! But I had no discomfort or pain inside my body where the work went on to cut away the kidney and remove it. I wouldn’t have known I had been operated on at all from that point of view. Only having the one kidney has not affected at all how I live my life or any aspect of my life. If I had another spare kidney I would not hesitate to give that one also.

    Take Care
    all the best
    Di

  • samantha:

    i think you are amazing,so much so you have inspired me to register,my dad had a new kidney 20years ago and its still going strong,i would have donated to him,but i was pregnant at the time,who i have since lost to cancer.but reading your blog has made me more determind to save a life,thank you.

  • Diane:

    Hi Samantha,
    Thank you so much for posting. How fantastic your Dad is still going strong 20 years later, that is wonderful. I am sorry for your loss though, that is very sad.

    How great you have signed the register. Gosh I am so pleased my blog has inspired you to do that, I hope it does to many other people as well.

    Thanks for taking the time to read my blog and to post letting me know.

    All the best
    Di

  • Rebecca:

    Thanks very much for sharing all this. I am almost at the end of being worked up as a donor for my husband and it has been very helpful to read about your surgery as it gives me a much better idea of what to expect.

  • Diane:

    Hi Rebecca,
    Thanks for finding this blog and posting. You must both be very excited that you are nearly there now. I am glad my postings have been helpful, I know I was very much in the dark about it all, so wanted to try and help other people know just what the whole process was like … warts and all!

    Best Wishes to you both
    Di
    x

  • tracy:

    i have just finished reading this blog as i was looking for information on how long recovery takes after donating a kidney. On 6 August 2010 i donated my kidney to my husband (he is doing amazingly well). I knew i would be feeling exhausted and a bit poorly but thought by now i would be feeling a bit more normal ?? I was just wondering how long will it be before i can go a full day without feeling exhausted ???

    I must add at this point that i wouldn’t hesitate in doing it all again as you do get so much satisfaction knowing you have made someone else’s life much better. I’d do it all again tomorrow (if i was feeling up to it ! )

    By the way Rebecca, good luck, you’ll be fine

    tracy

  • Diane:

    Hi Tracy,
    It has been just over 3 weeks since you donated, that is still pretty soon to be feeling full of energy etc. When I went for my 6 week check up I mentioned that I still had not got energy levels back and felt a bit whacked at times and I was told that is perfectly normal as it is major surgery we had, even though it may have not seemed so because of it being keyhole, and our bodies have to not only get over the anesthetic, but the emotional side also – we may not realise it but our emotions have been on a long ride preparing for this etc …and our body has to heal after the operation and get used to one kidney. The remaining kidney has to take on the extra work, it does grow in size a bit also. All that is going on at a steady pace and our bodies cannot cope with all that and leading a normal daily life. I was told to expect up to about 3 months before I felt right back to normal. We are each different in how we are anyway. I just know that I often felt like a sleep during the day or to go to bed early and this was weeks and weeks after, and I would just make sure I did get some rest when my body asked for it, if I could as I knew it was telling me it had “work” to do.

    A friend of mine who donated about a year ago he took a couple of months before he felt like he was just about back to normal, but even then would get spells of tiredness that he would not have got before.

    I am not sure what your day entails but if you are trying to lead a really busy/active day then you will feel very tired for a while yet as your body wont be able to cope. You just have to be patient. Mention it to your surgeon when you have your 6 week check up and I am sure they will say the same, that it could take 3 months or so before you feel really right again. Make sure you drink plenty of water as getting a bit dehydrated will tire you and you need to make sure you drink enough now with one kidney.

    Hope you get to feel better soon, do let us know. It is good to hear different people’s reaction to donating and how it affect us.

    Glad hubby is doing well, must be so fantastic for you both.

    Best wishes
    Di
    x

  • tracy:

    Di, thanks for such a quick response. I’m actually not doing much I have just been signed off work for another 6 weeks so i’m making the most of the time off. Perhaps i’m being a bit impatient to get back to normal as i do normally lead a very busy lifestyle. I have noticed that even after having a shower i need to take a 10 minute break before i can tackle the chore of having to blowdry my hair. Then another break before i attempt anything else. I will take note of the fact to drink more water, i have not been told that by anyone else. Thanks again for information it was really useful. I will certainly keep posting as i’m sure it will help others going through the same procedure. Off for a lovely pint of ice cold water now !!

  • Diane:

    Hi Tracy,
    Lol .. I do website design so spend a lot of time on computer so that is why I can reply quickly. I drink 1.5 litres of water a day which the doc said was great. Help flush everything through. I was also told not to take NSAID tablets i.e. nurophen, asprin etc .. now only having one kidney, I was told it was wise to just take extra precautions. If you do a google for kidney and NSAID’s one of the side effects is that it “could” cause problems. Certainly not a huge concern but it has been known.

    Actually I started regularly drinking about 1.5 litres a day when I was losing weight (well trying to), my dietician said that I was storing body fluid and to get rid of it I needed to drink more … huh!! lol … but its true. I was not getting enough fluids so my body stored some. Once I started drinking 1.5 lts I lost several pounds in weight as the retained fluid just went. Now it is habit and I do feel better for having enough water during the day. I will start dehydrating if I dont have enough and that makes me very tired.

    Interesting thing here (sorry, I know I talk too much, bad habit!) after the operation I woke with very dry mouth and headache (had that before after an operation) and once a nurse said to me drink water … its because you get dehydrated then get a headache etc .. and its true, first thing I did was ask for some water and within seconds my headache went and I felt fit as a fiddle. (okay mouth zipped now!)

    TTFN
    xx Di xx

  • Rebecca:

    Tracy and Di, thanks for this information. It is very useful and gives me an idea what to expect – and also to pass on to my husband, as I suspect he has very unrealistic ideas about how quickly he is going to get back to normal.
    I have been trying to make plans for making everything easier that might cause problems during recovery, including buying a small extra freezer so I can make stuff and stock up beforehand, so I won’t need to do much more than microwave food afterwards, move the laundry basket downstairs, so I won’t have to carry the basket of laundry to the washing machine, and we have booked the dogs into kennels for a month (slightly awkward as we don’t have a confirmed date for surgery, but things do need to be booked well in advance, unfortunately) and so on.
    I met up with someone who lives near us who donated to her husband – that was useful too. She said the only thing she had problems with was hanging laundry up.That was something I hadn’t even thought about, but I have contingency plans for that as well now.
    Tracy, I am glad you and your husband are doing well.
    Rebecca

  • Diane:

    Hi Rebecca,
    I found bending down very hard but then I think that was because I was overweight a lot so my lower abdomen really felt it and I didn’t want to take any chances with the internal stitches, but it was an impossibility to bend to pick up something from the floor,or get the pans from the bottom cupboard. I never had any problem hanging laundry up, it was movement that involved bending that bothered me. But for the first week I did virtually nothing except cook and gently walk around with sudden onsets of tiredness so would sleep/rest for an hour when that happened. Second week things started to look up but I was still very careful, maybe overly careful, but just didn’t want to rock the boat so to speak.

    Let us know how you get on and when you get a date. I am excited for you both …

    xx Di xx

  • sarah:

    hi, im having a meeting with transplant nurse soon, as im hoping to be able to donate one of my kidneys to someone on the waiting list. are you able to say what hosp you was under. did you have all your tests as an outpatient as ive read you may need to be admitted for a couple of days for some of the tests.

  • Diane:

    Hi Sarah,
    I cannot say which hospital I was at as it was a non-directed donation. I have never heard of any tests being done as an in-patient. All mine were as out patient. If you wish to email me we can discuss better and I can give you more information than I can on this blog. You can also post on our forum (link at top of page) You can email me at:

    company.account [at] gmail.com

    Thanks
    All the best
    Di

  • Diane:

    Hi Sarah,
    Check out this link and watch the video all the way through, very informative as are the links on the page.

    http://www.organdonation.nhs.uk/ukt/how_to_become_a_donor/living_kidney_donation/living_kidney_donation.jsp

    You may have to copy and paste that into your browser.

    All the best
    Di
    xx

  • Rebecca:

    Sarah, all my tests have been done out an outpatient basis, as and when the hospital could fit them in. All of them have been done at my local hospital, except for the MRI scan, which for some reason had to be done at Addenbrookes (which is where the transplant will take place)and they took yet more blood there, but most hospital visits at the moment seem to involve blood tests, so I am getting the hang of being a human pincushion. The tests are time-consuming, but there hasn’t been any need for staying in hospital.
    Rebecca

  • sarah:

    Rebecca – I did not realise that maybe tests could be done at local hospital. I will ask when i visit the hosp.

    Di – mine too would be a non directed donation.

    Sarah

  • Diane:

    Hi Sarah,
    I have sent you an email just now. I think a lot depends on the hospital as to whether tests can be done locally or not. I cannot say which hospital I was at but all the tests had to be done there and it was an hour’s drive away, yet I had a huge hospital with satelite dialysis center etc only 15 minute drive away. I did ask if I could have some tests there, but the answer was no. I didn’t ask why not though.
    xx Di xx

  • Hello Everyone! I thought I would just post and ask you all how you are getting on?

    Di
    xx

  • Rebecca:

    Hello Di
    How are you getting on?
    My MRI was ok, we saw the doctor from the Human Tissue Authority the week after and now we have the date for our surgery, with my husband’s plasma exchange sessions starting a few days before.
    I am trying to think of everything I will need to plan for when both of us are recovering from abdominal surgery at the same time. Any guidance and suggestions welcome.

  • Diane:

    Hi Rebecca,
    You have a date .. wow .. how exciting. It would certainly be helpful if you have someone at home for the first week at least to help with things as you wont be able to lift (doctors orders etc!)and other things you may find hard to do or not allowed to do – and tiredness is the main thing that will hit you. I did a ton of batch cooking before hand so just had to heat in microwave. I also made sure things low down or high up were within reach. Main thing is you both need to take it carefully so as not to dislodge stitches etc. Listen to your body it will tell you a lot.

    I am so excited for you both …. please do keep in contact.

    Di
    xxx

  • Rebecca:

    Thank you Di, tht is kind of what I thought. We have already bought a small extra freezer so I can cook in advance, and we have people to stay for up to a couple of weeks afterwards, and I am thinking about what things I will need to move in advance so that, for example, I don’t have to carry heavy bags of laundry downstairs.
    And I remember from the last time I had surgery that all I wanted to do for a while afterwards was to lie on the sofa, so I am prepared for that too. Well, sort of!

  • Diane:

    Hi Rebecca,
    Sounds like you have everything in order. Make good use of when you have people to stay and allow yourself to be spoilt! I suppose for me the two most noticeable things was the tiredness first week or so. Then the pain where the incision was make walking difficult. But that was partly due to me as I kept forgetting to take the pain meds! Plus being overweight .. how shall I say … ummm … my tummy sort of got affected by gravity so pulled down on the main incision and when I walked was a bit like jelly wobbling in the bowl …. lol !! gosh please don’t try to picture that scenario!! If I held my tummy in I got no pain, but can only do that for so long.

    How long does your husband have to stay in hospital do you know? Longer than you I would have thought?

    x Di x

  • Rebecca:

    Thanks Di
    I had better be very careful not to put on any weight between now and the surgery – no comfort eating for me, alas…
    Yes, my husband will have to stay in hospital at least a week after the surgery, so it will be a while before I see him again.
    I have arranged for various family members to stay for a week or two after surgery to help out – it is very kind of them, but I hope I will be ok soon, because I am not comfortable with the idea of being too dependent for too long.
    I sympathise with you forgetting to take your pain med, because that is the sort of thing I do – I am just too forgetful to become an addict! Unfortunately, I am also too forgetful to manage pain properly. Oh well.
    Rebecca

  • Diane:

    Hi Rebecca,
    You are not alone in feeling uncomfortable having to depend on others but at least it is for a good reason and the last thing you want is to pull some internal stitches etc while recovering. It will be great when your hubby comes home and you can both recover together.

    Keep in touch …

    Di
    x

  • Rebecca:

    The transplant has happened! Keith remains in Addenbrookes – he is doing well, but will need to stay in a while for lots of monitoring and adjustments. I had to stay in a bit longer than anticipated as I had a few minor complications, but am now home.
    Please keep your fingers crossed for us that the kidney continues to work.

  • Diane:

    Oh Rebecca!!! I woke up to reading your post and am grinning ear to ear. How wonderful. I am so pleased you are both doing well. Sorry you had a few minor complications and so glad you are home. I hope you are comfortable and not having too much pain, that side of it does seem to vary person to person. Are you able to visit Keith or is it too far away in the condition you are in?

    I expect Keith feels totally different than before the op and yes, fingers, toes and whatever else I can cross is for his speedy recovery and I pray he will have your kidney for years and years to come. How often does Keith have to be monitored once he comes home?

    Thanks for posting, and please let me know how things progress.

    I am so very happy for you both.
    With love
    xx Di

  • Rebecca:

    I am basically ok and there isn’t much pain as long as I stay sitting with my feet up and my knees hunched up. And remember to take the medication – to make sure I don’t forget any of it, I have made myself as little chart, as it is surprisingly easy to forget, isn’t it? I don’t actually feel bloated, but my stomach looks hugely puffed up.
    Keith will have to return to the hospital twice a week for six weeks after he gets home, then once a week. He is still receiving masses of treatment and medication – he has a long way to go. I don’t know whether you were better off not knowing what happened to your recipient, or whether you would have been curious to know what becomes of them immediately afterwards. of course, they can never give you any specific information, but I imagine you must feel curious about the process.
    I can’t visit him at the moment, the drive is simply too long.
    Thanks so much for all the information you shared about being a donor.
    Rebecca

  • Diane:

    Hi Rebecca,
    Yup! lol .. it is so easy to forget. I kept forgetting to take the pain meds and was no fun. I never thought of doing a chart .. duh!

    I heard about my recipient a couple of weeks later that they were doing fine. Several weeks later I received a letter from him/her saying they felt fantastic. So that was great news. To be honest, all I wanted to know was that the kidney worked. I did not want to know who they were or anything else about them. Just the thought that someone was out there getting their life back together was what it was all about.

    So glad Keith doing okay … I guess there is a lot of treatment still for him to have. you know I have never really thought about the recipient side as far as what happens to them after the operation.

    Keep in touch ..
    Di
    x

  • Rebecca:

    You must have been so happy to hear from them that they were doing well, after all you had done for them. It is great that they let you know.
    Take care, and I hope you continue to do well!
    Rebecca

  • Rebecca:

    In case there are other donors or potential donors reading this, I wanted to share my tip for recovering at home. I have found that much the best thing for pain relief is to use one of those beanbag things that you heat in the microwave and I keep it hugged to my stomach at all times. The one I have is quite long, so it wraps round me almost to the space where the kidney used to be. This provides a huge amount of pain relief and comfort and also some support for the wound area. I think it actually works better than any of the medication I was sent home with. I imagine it would work well for many other kinds of abdominal surgery as well.

  • Diane:

    Hi Rebecca,
    That is a very interesting and useful tip. That idea never even occurred to me. Can one buy these online? Can you recomend somewhere to get a long one from?

    The pain you had, was it mainly from the incision area?

    Thanks for that tip I am sure it will be very helpful to a lot of people. Now why didnt you have your surgery before I had mine! hahaha …. I could have done with a tip like that.

    Di
    x

  • Rebecca:

    Almost anywhere that sells any kinds of gifts seems to sell microwavable objects but sadly the shop where I bought my extra long one has now closed, and I bought its predecessor at a craft fair. I expect that quite a lot of pharmacies sell them. There is quite a selection available on Amazon –
    http://tinyurl.com/3am6db4
    You can improvise one as well. You just need a large sock and some dried beans. Part fill the sock with the beans, tie it off at one end, and heat in the microwave on full power for two minutes. (Actually, not knowing the size of the sock/beans, it might be an idea to experiment first with lower power and shorter times and then work up to longer times if the bean bag doesn’t get hot enough, rather than risking it catching fire first time, or burning you.) Putting a few drops of lavender oil on it makes it extra nice and soothing. You can also use long grain rice, but not the easy cook kind. And be careful not to let it get too wet, you don’t want it going mouldy.
    As for the pain, yes mainly in the wound sites, but also in the place where my kidney used to be. It is worse around the main scarafter eating. And some gassy pain which I think is a side effect of the painkillers. Did you experience these? I imagine that it must vary from person to person. Nothing unbearable or more than I had expected, but I will be happier when it wears off.

  • Diane:

    Thanks Rebecca for the link and the idea on how to make your own.

    I had two areas of pain/discomfort. For the first four days after the operation had discomfort top back of right shoulder. This was due to when they inflate you with carbon dioxide, some escapes up into the shoulder area and over time just goes, but while it is there causes discomfort. I only felt it when I breathed in and was annoying more than anything else but quickly went.

    The main pain was the bikini line incision. Even walking made it hurt and I either had to hold my tummy in using muscles, which in the early days was not possible, but after about a week could do that, or to support my tummy with my hands by holding it while I walked. It only hurt when I had to use my abdomen, so walking, getting up from a chair or moving in bed etc. Laying still or just sitting I had no pain at all. I did not feel anything where the kidney used to be, in fact I would wonder if they actually took it out, lol. I was very very bloated for ages afterwards. This started immediately after the operation, I went from 89kg to 93kg which is a huge increase and that took some time to go. That was very uncomfortable more than anything else as it inhibited my movement (bending, sitting etc).

    I do now though get some internal pain. This is on the left side, kidney was removed from the right. It will often feel like organs are trying to overlap eachother.That is uncomfortable and at times causes pain that momentarily takes your breath away. I also get my gall bladder/liver “move” slightly and the osteo has to massage it back. That does not cause any pain but does cause very upset tummy until he corrects it. He reckons they are both just dropping down a few mm as the kidney is no longer there – and until my insides fully heal and settle I will feel some internal “differences”. I have not seen my doctor about any of it as I wanted to just see if it all settled and of course cannot be 100% sure it is all related to the kidney removal, could just be coincidence? We shall see. None of it is hindering my life, but it is just a nagging discomfort/pain that happens every now and then.

    Apart from that I am totally back to normal. I make sure I drink plenty of water. If I dont I do get dehydrated which affects me (dark yellow urine is a sign of dehydration), but then I always have for years drunk around 1.5-2litres of water each day and miss it if I dont, so that is easy to stick to. I am also careful not to take ibuprofen for anything and stick to non NSAID’s if I do need to take anything (housemaid’s knee gets to me at times, lol).

    It all seems like years ago now that I donated, yet at the time the evaluation seemed to take forever.

    Di

  • Rebecca:

    Yes – no-one warned me that I would wake up from surgery 5 kilos heavier than I had been immediately before. A couple of the kilos went straight away, but it was still somewhat unexpected.
    I think the pain in my left side may be an infection. I went to the doctor this morning and he gave me more antibiotics. I do hope this will sort it out.
    It is good to be warned about the other organs moving around, as this is something I had wondered about and am planning to ask about when it comes to the 6-week check up.

  • Diane:

    I hope the “infection” clears up soon, not nice.

    Let me know what is said on your 6 week check up re the organs, I would be interested to hear as I believe this is connected with the operation, but of course cannot be sure. I don’t think I had this at my 6 week check up, you know I really cannot remember. If I did, I never thought to mention it!!

    All the best
    Di

  • Self:

    Uhm… I don’t really know what to think… but I have a question How can I reach you?

  • Diane:

    Hi,
    You can post here again with your question or you can use the contact form on this blog. Link is at the top of the page.

    Thanks
    Di

  • Rebecca:

    I had my six weeks clinic today, and can you believe, I forgot to ask about what happens to the space where the kidney was! I will get Keith to ask when he goes back next week. I remembered in the car on the way there and on the way back, but completely forgot while I was there.
    I haven’t been discharged yet, as I am getting some quite bad nerve pain. I think I am unlucky as they don’t normally cut through nerves. Well that is what the doctor said, anyway. They say it will clear up eventually, but it is a matter of weeks rather than days – the sooner the better really, as it is quite unpleasant.
    Anyway, I will let you know when I have my answer about what happens to the space.

  • Diane:

    Hi Rebecca,
    Someone said that as the kidney is quite small anyway body fat just spreads out a bit but that the liver/gallbladder can drop slightly. But I don’t know how true that is.

    Which kidney was it you had removed? right or left?

    I can imagine that nerve pain is quite unpleasant, sorry to hear about that. From the videos I have seen of kidney removal it is a very delicate and “fiddly” procedure.

    Hope that clears up soon for you. Is it all the time or just when you move .. or??

    How are your scars? Are they seeming to heal nicely?

    Yes would be interested to hear about the “space”.

    Di
    x

  • Diane:

    Hi Rebecca,
    Just realised how inconsiderate I was as I didn’t ask after Keith. How is he? How often does he have to go back to the hospital now?

    Cheers
    Di
    x

  • Rebecca:

    Oh, thank you for asking. Keith seems to be doing well, the kidney is fine and fingers crossed it stays that way. I think the doctors are pretty pleased with how it is going. He has just been switched from going to the clinic twice a week to just once a week, and that is good news.
    The nerve pain is vicious and seems mostly to be triggered by bending forwards. I hope the new medication fixes it! As long as I sit still, it doesn’t hurt at all, so it is a shame that isn’t terribly practical.
    They took the left kidney – all other things being equal, they seem to prefer that.
    Are you feeling back to normal now? I hope that all is well with you, and you don’t have any after effects.
    Rebecca

  • Diane:

    Gosh I didn’t realise he had to go that often to the hospital. When I think about it, I suppose that would be the case as very close watch would need to be kept on him and kidney to make sure no rejection,etc.

    That pain sounds awful, I have had a “normal” trapped nerve before and exruciating, so can understand how unpleasant for you to have it all the time when you do certain things. I do hope it calms down soon. Do a google for “nerve pain after kidney removal” there are quite a few results.

    I have heard left kidney is preferred. I think because it has a longer renal vein so easier to attach to the recipient. In my case my right kidney was smaller and had less % function and slight scarring so they took the right. Some hospitals also have different surgeons depending on whether left or right kidney is removed and wont do keyhole for one of them. I understand from a potential donor that is the case at Southmeads in Bristol.

    As for me, I am fighting fit. I can’t really say I had any problems afterwards that were not “normal”. One incision is still a bit tender but only if I press it hard. Yes I know … I shouldn’t be pressing it hard, lol! I recouperated very quickly and now would not have known I was missing a kidney or had an operation, except for the scars.

    Please keep in touch and let us know how you get on with the pain and how Keith gets on. Expect you are both looking forward to Christmas.
    Di
    x

  • Rebecca:

    Well, I have the answer to the space question. Apparently, the bowel expands to fill the space. So now we know!
    What do you tell people when they ask if you feel any different after having a kidney taken? All I can say is that I am sort of aware of having a space where a kidney used to be, where I wasn’t aware of having a kidney before.
    Yes, I believe the renal vein is longer on the left, so that is why they prefer it if there is no particular reason to take the right. In my case, the MRI showed that I have two renal veins and arteries on the right, but only one of each on the left, so the left was also better for that reason.
    Keith is doing well, but transplant recipients need a lot of monitoring! Endless tests for different things, and after every single visit there is some adjustment to his medication.I think it is a never-ending balancing act.
    As for my nerve pain, it is still there unfortunataly, but apparently it takes a couple of weeks for the meds to start showing an effect. But yesterday for the first time, I was able to wear jeans again instead of soft yoga pants. It hurts when I first put them on, but after that it is ok, so I feel that is a milestone. I couldn’t wear anything that had a tight waistband or fitted too rigidly before. So I am very pleased about that. Did you have any issues with what you could wear afterwards?
    I love the snowflakes, by the way!
    Rebecca

  • Diane:

    Hi Rebecca,
    Gosh it never ocurred to me it would be the bowel that filled the space .. I wonder if that is for both left and right kidney.

    Personally I don’t feel any different. I would not know I had a kidney removed at all. Maybe you feel different because of the nerve pain? Maybe you also feel something where the kidney used to be? I don’t know, I just know apart from the scars I wouldnt know I had been operated on.

    So glad Keith is doing well.

    Apart from the extra weight after the operation, no I had no restrictions on clothes. I have to say I feel very fortunate that I had no after effects at all apart from the normal ones. Oh yes a few digestive problems that came and went but my osteopath sorted those out. In fact I highly recomend an osteopath .. not one that does deep tissue massage but one that uses your own body as sort of resistance. I go to this guy http://www.alexisenelosteopath.co.uk/ in Tetbury and it is amazing what he does including pain (which includes nerve pain as I get that in shoulder, unrelated to kidney of course). Anyway … apart from that, no problems.

    Let me know how your new medication works when it eventually takes hold.

    Yes, thought would put a bit of a Christmassy feel to the blog, lol …

    Keep in touch
    Di
    x

  • Rebecca:

    The most dreadful thing has happened and Keith has died most suddenly and unexpectedly, after he had been doing so well and was looking forward to doing so many things.
    But I would still give my kidney like a shot, and would do it again tomorrow if I could.
    Rebecca

  • Diane:

    Oh Rebecca,
    I am so dreadfully sorry. I am lost for words. I just sat reading what you wrote not being able to take it in. There are no words to comfort you, so I wont even try but my heart goes out to you and to Keith’s family.

    I am just so so sorry …..

    With love
    xxx Di xxx

  • samantha waldock:

    Di…thankyou so so much for posting your blog! Im due to go in and have my right kidney removed as it is incredibly diseased :( and possibly cancerous.
    Your blog was really open and honest and i feel much more prepared now for the ‘journey’.
    You are an amazing, selfless woman and wow…to donate a kidney..that deserves a medal!!
    Thank you and i wish you well
    Sam xx

Leave a Reply

Please help keep
this site going
NHS Donor Register

Join the Organ Donor Register 0300 123 23 23

Recent Tweets
Please help keep
this site going
snowflake snowflake snowflake snowflake snowflake snowflake snowflake snowflake snowflake snowflakeWordpress snowstorm powered by nksnow