July 4th, 2010 | 
Author: 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.
Tags: 118 Responses to “Recovery at home after Kidney removal”
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Hi,
Rebecca it is strange how transplant units or surgeons for kidney removal all seem to vary in their advice following removal. I was told to be careful of alcohol consumption as it thins the blood and can cause the kidney vessels to have restricted flow so with only one kidney ….. I think some people are just more cautious than others and want to cover every possible potential problem!!
As for tiredness. I am wondering whether your adrenal has anything to do with it, bearing in mind the adrenal sits right on top of the kidney. Like the kidneys we only need one but even so …..
A major operation can easily affect hormones and is known to be a cause of thyroid problems. With my thyroid problem it could not be remedied until my adrenal was brought up to par. Once it was, my energy levels certainly increased. One way to tell is to do the basal temperature test for 2 weeks. Literally the moment you wake, before you open your eyes almost,lol, take your temperature with a reliable thermometer (not an ear one but good quality under the tongue digital one). Take temp again same time each evening between 10pm and 11pm if possible. If you retire at same time between those times then when you have got into bed. Make sure your body is relaxed and you have not just been active prior to the evening temp. Record those two for at least a week (I was asked to do it for 2). My AM temp was always onlyh just above 36 and evening was well below at around 35.45 ….. Now although I am getting the treatment I need for thyroid every day I still check my temp …. if I have had a particularly stressful day either emotionally or physically then my temp will drop and I know to take some adrenal supplements or I will take before hand.
It might be worth checking your adrenal or even general hormone levels. Just a thought ….
Di
x
hi all and thanks for the replies, its a great help
i had my kidney removed as it was only functioning 8% and had numerous ciests and apparently caused me pain when i drank (mainly alcohol) as i was consuming a larger amount of fluid and the kidney would become full of fluid which it had trouble filtering.. Which would cause the pain plus there would be a risk of one of the ciest bursting or my kidney becoming non functioning inside me.
I was given parocitamal by the hospital which i’ve been taking for the last week but today i have had none and seem to be fine with pain etc. However i have been waking in the night needing to use the bathroom and i am a little concerned if this is common with a kidney removal or if it could possibly be the parocitamal making me pass urine more regularly as i’ve very rarely woken in the night for the bathroom before. (I’m going to see if there is any change tonight from not taking any.)
once again thanks, you’ve all been a great help and dare i say much more understanding than the docs
and much more detailed too!
Hi again Legion,
regarding the night time urination – I remember it is really annoying isnt it – when you are sore and have just got comfortably asleep and then find you need to get out of bed! For me I found that because of the bloating (from the the laproscopic op) I actually felt like i needed to go, but it was probably just the bloating pressing on my bladder giving me weird sensations. It took at least a couple of weeks for the bloating to fully go away.
Also from what youve said (bearing in mind Im totally guessing here!) if your bad kidney would become full of fluid then you wouldnt be weeing it out (often a problem for kidney patients on dialysis or who have really low function). So, now that the kidney has been removed your other kidney has got the freedom to do its normal urine-making thing!
Glad youre feeling well enough to be off the painkillers
scott
Di, several people who have donated a left kidney and experienced similar symptoms have suggested that it might be an adrenal problem, so I have asked that an adrenal check be included in my next check-up. The nurse was surprised to be asked, she said they don’t normally do that. Given that it seems to be quite a common side-effect of left kidney removal, maybe they should check it without the person having to ask!
Legion, I think that needing to pee in the night is perfectly usual after kidney removal. I doubt that paracetamol has anything to do with it. Don’t worry too much, and don’t stop taking painkillers if they are helping you.
There are a lot of side effects of kidney removal I think if they tested for all of them it would cost the NHS a lot of money. I think as long as people say when something is wrong then they can be examined. Also the adrenal can settle down after a while anyway. But all those hormones are connected, adrenal, thyroid etc etc … could be one could be all. I dont believe left kidney removal has anything to do with it, just kidney removal/major surgery. The adrenal can be damaged yet adrenal function still be normal as the other one works fine and you only need one working fine. The left kidney is the most common kidney to remove so any side effect is likely to be higher for left than right (though men do have side effect just pertaining to left kidney). I had adrenal problem after kidney removal (right kidney) but it righted itself.
We do need to be careful immediately after any major operation and take things easy. Our body can only cope with so much and if healing is compromised becuase we try to ask our body to do too much then the adrenal can suffer anyway, whatever operation. ONce that happens if it is not righted then it can lead to thyroid problems and then it is a circle as the thyroid wont work if the adrenal is not functioning properly.
Taking into account the emotional stress you have also had on top of the major operation, that is classic for the adrenal to take a hammering and perhaps not recover. But if you do the temperature test that will give you some idea.
Di, you are completely right that it has been very difficult for me to determine which of my symptoms have been caused by bereavement and which by the surgery. I had been assuming that they were caused by grieving and stress. But as I have recently found out so much more about the link between left kidney removal and loss of adrenal function, I think it will be worth checking whether there is a physical cause. I have now heard of so many people suffering impaired adrenal function that I do wonder whether it shouldn’t be part of the routine tests for donors. The following comes from a study at the University of Zurich
“The success of kidney transplantation is hampered by the shortage of organs. One attractive strategy is the use of kidneys from living donors. During the donor operation the kidney artery, kidney vein and ureter have to be interrupted as far as possible from the kidney to have sufficient length for the reconnection of these structures in the transplant operation.
An adrenal gland is situated at the upper pole of each kidney. While the arterial supply is accomplished by many small vessels, the venous drainage is only through one vein. On the right side the adrenal vein empties directly into the inferior vena cava (the large vessel transporting blood from the lower body to the heart). In contrast, on the left side the adrenal vein empties into the kidney vein, which in turn drains to the inferior vana cava. Due to these anatomical differences a left-sided removal of a kidney always necessitates an interruption of the left adrenal vein, while a right-sided kidney removal does not.
As the venous drainage of the left adrenal gland is closed during living kidney donation, the gland is most likely functionally impaired. This can be compared to a right-sided kidney donation, where the adrenal vein is left intact.”
Only too true Rebecca. I have learned a lot over past few years from my thyroid specialist (non NHS) and in particular adrenal. Thing is we only need one adrenal to function properly. If one is damaged it should not have that much affect overall just like we only need one kidney – which is why I believe that loss of adrenal function after removal of kidney (and this does happen to those that have right kidney removed also) is a combination of events. It is well known that hormonal imablances can occur after major surgery. Also depression akin to post natal can occur, again a hormonal imbalance occurs. But if just one adrenal is affected there should not be too much change in a person as the other adrenal copes perfectly well which is why I believe both adrenals are affected to some degree. I have spoken to people who have had an adrenal removed and as with a kidney removal, they are unaware they have had it removed as far as their bodily function – which is why I believe that there are a combination of things. If the removal of left kidney means interuption of the adrenal vein then why do not all people suffer adrenal impairement who have the left kidney removed. Also some who have had right kidney removed do also have limited adrenal function as I did and others I have spoken to, who after following the regime I was put through by my non NHS specialist, had adrenal function restored. It is well known that after major surgery or a shock to the body either physical (operationl, car accident or similar) or emotional (bereavement, divorce etc) the hormones can be affected especially thyroid and adrenal. In my case my T4 was not converting and eventually led to adrenal fatigue which then resulted in the thyroid/adrenal not responding to any conventional treatment. As soon as the adrenal was rectified so the thyroid was able to be treated. After my kidney removal the adrenal function also fell, this happened a week after surgery, a week after that with the function still low I was able over a month to restore function but then I know my adrenal is susceptible to stress and the house move I am going through at the moment has caused it to lose function. With a lot of people only the adrenal is affected by stress and does not lead to other hormonal imbalances. So although I agree with what is written abot the adrenal being affected when left kidney is removed my own disussions with various endos and people etc leads me to believe that those people would probably have had lessened adrenal function anyway. Unfortunately that cannot be proved one way or the other. In quite a few cases the adrenal takes a bashing anyway simply because of the shock to the body due to the operation and any associated emotional stresses but recovers after a few months as long as the person allows it to.
As for testing people for adrenal I dont think that should be done in the first 6 months as a lot of people would show their adrenal was impaired as it had a lot of work to do at that time, yet it would then naturally pick up. I think if after a certain length of time people are still lacking energy then a test but I dont believe it should be compulsory. If someone is not feeling any lack of energy it would then be a waste of NHS resources to just automatically test them.
hi again guys,
sorry i have another question which is worrying me… The past few days, maybe week, i have started to get a pain in my lower belly (i think its when i need a wee) when i wee it seems to relive the discomfort. This is my second week after op of kidney removal and just wondering if this is normal? I have noticed this same pain when walking at times too.. I’ve taken a walk into town twice, both times this feeling of bloating/mild discomfort has occurred and i noticed tonight when i woke, went to the bathroom and pain has almost disappeared. It almost feels as if i’m very hungry??
I haven’t really taken pain killers for the past 3 or 4 days and i’m wondering if i feel this as stopped taking them?
I’m off to the doctors tomorrow morning so i’ll ask him and i’m off to see uriologist next month so i can ask them too.
Has anyone else experienced this after having their kidney removed?
Thanks.
Legion.
Hi Legion,
Sorry for approving the post late I never received the email saying you had posted. Well by now you will have been to the doctors … what did he/she say?
Cheers
Di
hi Di,
yes i have been to the docs now and she said it may be a urine infection but she was not sure as there were no other symptoms, so i am now on a course of antibiotics to see if they help.
it does seem as if its starting to get better, we’ll see.
Glad it seems to be getting better and good job you are keeping on top of things. Can’t let anything “unusual” go unchecked.
Di
x
Hi Diane,
I am not a donor but had my right kidney removed on nov 6 this year (almost two weeks ago) and I’m wondering if you had any pain in the area of the kidney post operation? I have started to get a bit of pain in my right side a week on from my operation and I am a little bit concerned. I was told I had some sort of clips put on my tubes to close them up, which I’m yet to find out more about when I go to my follow up appointment in 6 weeks. If the pain keeps up I will call my doctor before then, but in the mean time are you able to tell me what you had done to close your tubes and if you had any pain in the actual area internally? Pain from the incisions is obvious and for me they are well on their way to healing.
Another thing, thank you for posting all this stuff about adrenal fatigue above. I am a huge stress head and have had a lot of stress this year, so much so that my hands or fingers shake on a daily basis from what I’m assuming is nerve damage in my nervous system. Any way I have been very interested to know if I will have any sort of adrenal damage post op, and have thought to ask my doctor about that in my follow up appt. I find it strange and very frustrating that you don’t hear much about ‘adrenals’ from normal doctors, surgeons etc. If I didn’t know better I wouldn’t even know they existed.
Looking forward to hearing back from you.
Ruby x
Hi Ruby,
Thanks for posting. First I would say to you and to anyone reading … if you have ANY pain at all you cannot account for GO TO the doctor immediately. This is one area (organ removal/operation) where you cannot afford to “wait and see”. So please, you have a pain you cannot account for, go today or asap to see doctor.
I did not have any pain in the area of my kidney removal at all, in fact there was not even the slightest bit of discomfort. If they had said we opened you up but did not take out the kidney I would believe them, lol … the only pain or discomfort I got was in the main bikini line incision area (I still get pain there if I press hard when drying after a shower) and I had discomfort in my left side which I later found out was my “insides” moving around and settling down after being disturbed! (??).
Please go to your doctor.
As for clips closing you off …. I would think from that you did not have your operation in the UK? I did not have clips.
As for adrenal. Very little is really known about the adrenal and what affects it and what can cause long term problems. I had an underactive thyroid, which had it been caught in time I would have been okay, but it continued to work less and less until in the end the adrenal could not function. Once that happens the thyroid cannot pick up again.
Shaking fingers is not necessarily nerve damage? For nerves to be damanged something has to damage them. Daily stress will not do that but it can affect the metabolic system so that we do not function properly which in turn could cause shaking. Then something like carpel tunnel could also do that.
Please see a doctor.
If you want to find out about your adrenal then do the adrenal home test. the basal temperature test. Read this page, although about thyroid this page concentrates on adrenal. I was told by my metabolic expert to do the temp test for 14 days. Make sure when you do the morning one it is very first thing, beforfe you yawn even and certainly before you reach to put the light on or take a drink or go to the loo!! Any physical activity however small can raise temp, you dont want that you want the morning at rest temp. Same with evening, make sure you are relaxed prior to taking it and not just after a hot bath or shower or getting undressed etc. Try and make sure the temp (evening especially) is taken at same time each day. http://www.stopthethyroidmadness.com/adrenal-info/
If you do have an under performing adrenal which is purely due to stress (either stress because of life or stress because of other hormonal changes) then it need not be that hard to get put right. I suffered for around 8 years then the expert I found diagnosed me correctly with no blood tests etc just his examination based on years of treating patients with the same thing and I got medication (non prescription) which put me right.
I now keep that medication to hand so if I have a stressful day I can take some or take some before a stressful day if I know I am going to have one.
Our hormones all work in harmony and if one under performs for any length of time it can have a knock on effect on others and then it can get to the stage where your body wont recover naturally without some help.
Adrenal damage after surgery may not necessarily be due to any physical damaage to the adrenals. We do only need one, we dont need both (as with our kidneys). But any stress to the body, especially a major operation can cause havoc with our hormones and the adrenal is one of the first to feel the effect. After my kidney removal I concentrated on my adrenal and took the medication I had for adrenal stress. Did it help? I don’t know as I don’t know if I would have had any adrenal stress that would not have recovered.
If you want to know more about the medication I take for adrenal and thyroid related …. then send me a private message using the contact form, link at top of page and will let you know my “regime”. Same time let me know where you live as if in the UK I can let you know the name of the metabolic expert I see. to me this guy is an angel sent from God as have lost count of the number of specialists and doctors I saw over the years all of whom said nothing wrong with me. This guy in a one hour appointment, diagnosed and got me on the road to recovery. If it wasnt for him my life would be a nothing right now, I would probably be almosst bed bound with adrenal exhaustion and a under active thyroid tht doesn’t respond to the only nhs approved medication. Doctors rely too much on the results of blood tests and it can be hard to get tested for the ones you really need without using a private clinic
All the best … and GO see your doctor, DO not delay.
Di
x
Thank you for this information, Di. I know several donors who now have adrenal problems, so all information is very helpful.
Your welcome Rebecca …. the adrenal or rather lack of performance can affect our lives in so many different ways that to be honest the symptoms presented don’t always lead doctors to even suspect adrenal as often there are more obvious “reasons” as to why someone may be feeling the way they are. Also some doctors don’t believe in “adrenal exhuastion” . Once supressed the adrenal can find it hard to come back up if a person is suffering fro other metabolic problems. as in my case under active thyroid (that was so low the blood test showed nothing at all). But my adrenal could not be put right until I stopped all thyroid medication for 10 days while taking the adrenal supplements. I soon knew when my adrenal was back working as my temperature shot up to 39.4 and played havoc for about 3 days before settling down again. I still take my temperature morning and night and will do for as long as I am able to as that is the first sign that I am suffering from adrenal stress and so I can take some adrenal support.
Fascinating subject the hormones and how they all work and interact with each other … I know people who have been diagnosed with ME and fibromyalgia and for years have been bed bound. in fact once the thyroid and adrenal/hormones were corrected they now lead active lives pain free. As I said this metabolic expert is an Angel from God!!
I have to buy my medication from Mexico although years ago it used to be the only NHS medication available for thyroid …. until a cheaper not so good synthetic substitute was found!!
Again end of rant! lol
Di
x
Hi Diane,
Can I just say thank you for your blog, I have just got home after donating to my son, it was a great success, we just have to get over the discomfort and tiredness now, but your blog has been so helpful on all aspects so I knew exactly what to expect. I just seem to be so bloated which is causing uncomfort, and slight frustration that I can’t take my dog for his long walks yet, but I guess I just need to be patient.
Hi Maureen,
Sorry late replying but for some reason my email notification only just came through!!
How brilliant!! I can’t imagine what it must be like to have one’s child back in the “land of the living” and to know you have done that. Wow!! Yes bloating you just have to put up with but it does go … gentle excersie (never could spell that word) certainly helps. Just gentle walking around etc. The tiredness also holds one back, but then it is your body saying “hey slow down, I need to recover so stop doing press ups” lol
…. so all is good.
Yes we have to learn to be a patient patient … not easy!!
thank you so much for posting …. and what a wonderful life there is ahead!!
Di
x