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! Â 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: 164 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
Again a really helpful account to let me know that what I’m experiencing is ‘normal’.
Thanks particularly for the prompt of remembering the pain medication and propping yourself up with pillows in bed. I’ve found a couple of pilows under the knees as well helps emulate those wonderful hospital beds. Looking forward to the return of my energy levels!
Hi AJ,
It is sometimes those “little tips” that can really make a difference :). I know something, that after the hospital bed, which was just so so comfortable, I really wish I could afford to buy a bed where it raises the foot end and the head end. I have never slept so well in all my life as when I was slightly raised up etc. Have tried since with pillows but not quite the same thing. if I ever win the lottery, lol, I know what I am going to treat myself to. I don’t sleep well at the best of times, but one of those beds would make all the difference. I noticed a huge improvement in my breathing when sleeping slightly raised.
Energy levels is, I think, the biggest problem to overcome for most people. it was week 2 before I noticed my energy was beginning to get better, but quite a few weeks before I was back to “normal”.
Just remember not to rush things, however slow they may seem to be. One thing I did notice was, becasue we are not sick and so we do not feel ill, we can tend to overdo things,which we mustn’t. Tiredness after a major operation is the body telling us it needs all its energy to go into healing, and so we slow down. Also we musnt risk busting the internal stitches etc if we overdo things. This was one reason why I ended up not taking too much pain meds as I wanted a constant reminder to take things easy.
So, please take it easy, your energy will return quicker that way once your body has healed.
Please let me know how you get on with your recovery.
All the best
Di
Hi All…
I did not have my kidney removed. They wanted to when they found a 54mm x 68mm cancer tumour clinging to it, but I was so incredibly lucky…really. After cutting it off the bottom end of my kidney, and doing the subsequent post-op biopsies, I was cleared of cancer. What an incredible relief….however, I was in for a few surprises. The first one was while recovery at home. They had removed my staples and stitches from a still swollen abdominal area, and as I arrived at home, it bust open at the bottom of the wound. I was rushed back into theatre and many thousands of South African Rands (currency) later, I was completely re-stitched again (two-hour operation). This upset me greatly, and the pain was excruciating following the operation.
I eventually returned home a couple days later. It was, and still to a certain extent still today, very uncomfortable, because they mended it differently from the previous original operation. (By the way….all this happened in the last month before this post).
It feels like I have barb-wire in the lower part of my abdomen, combined with fire, so I am using serious pain medication to contain the pain.
I do have some good news, which softened the blow of the wound tear as well as the very painful time following it. My urologist surprised me with a live sonar scan when I returned a couple days ago to him to remove the second set of 42 staples as well as the stitches. The scan showed that they, after initial plans to remove the entire kidney, successfully removed not only the cancerous tumour, but only removed 3% or only 5 mm of my kidney as well, leaving me with a fully functional kidney!
How fortunate can one 46-year old man be?
I wish all of you a long life, thanking you in silent gratitude for giving up your kidney to save a life.
I am recovering with a new, very sincere respect for kidney function, as well as the unselfish individuals who donate their’s to give another person a chance at life. I bow in admiration….
Regards
Paul
Hi Paul,
Gosh! thank goodness the cancerous tumour was found before it did any real damage. Yes a real blessing!! Also that you still have a very good functioning kidney!! One dares not think about a much different outcome if the tumour had not been discovered until you had become sick!
So what caused the awful pain? Had they damaged a nerve or ??
All the best
Di
x
Hello Di
Thank you for your comments….really.
The pain was caused by more internal stitches (thicker ones) pulling my abdominal muscles together….truly like I have barb-wire there. These stitches take up to three months to dissolve.
Have a great evening…
Paul
Hi everyone
I have recently donated a kidney for whoever was in most need, and reading this blog is very informative.
The main symptoms I have experienced since coming home is tiredness, bloating, and loss of memory for some reason (has anyone else experienced this). Also the feeling of wanting a wee has returned, whilst I was in hospital I had lost this urge and only went when the bladder pressed on my abdomen.
I am on a course of antibiotics flucloxacillin as the drainage site has started weeping, the other 3 sites are clear and have no dressings on.
I am due on Monday to see my surgeon for a check up.
The greatest news is that the operation is a complete success for the recipient
Hi Tony,
Thanks for posting and well done for donating. All the symptoms you mention are quite normal. All are quite common except for the memory. I have come across two others who had memory problems afterwards but it cleared up.
A lot of people get incision infections main thing is to see someone about it as soon as possible, which obviously you have done. I kept getting a recurring one which ended up being one of the self dissolving stitches not having dissolved but poked its way through the skin. So small couldn’t see it! After a few minor infections with it, it poked its way through a bit more so could be felt – and whipped out 🙂
So pleased recipient is doing well. Great news
Hope the check up for you goes okay …
All the best
Di
Hi Di,
Hope your well, I was just wondering if you could fill me in on what happens at the 6 week follow up appointment?
Thanks hun
Tammy x
Hi Tammy,
I had some blood taken and gave a urine sample. I saw the co-ordinator who took my blood pressure and weight and asked me general questions about how I was feeling and how my recovery was going. Asked if I had any questions and we generally had a chat. I then saw the surgeon who examined my abdomen and said all seemed to be healing fine. Asked me a few questions and if I had any questions and that was basically it.
An appointment was made for an annual check up which I had with coordinator and nephrologist. A couple of weeks after the 6 week appointment the blood/urine results were sent to my GP with copy to me and they were happy with the results.
So the 6 week checkup was pretty quickly over 🙂 . Hope that helps Tammy.
Cheers
Di
x
Dear Diane,
We haven’t spoken in a while so thought I would let you know that as far as I am aware all is going well. I have passed all of the physical tests and the psychological assessment also.
I had the interview with the Human Tissue Authority representative and again as far as I am aware all was straight forward.
I am getting more and more at ease with the waiting which at one time was finding very difficult..
Thanks again for your help which is greatly appreciated
Philip 😉
Hi Philip,
Glad things are moving along now. So close …. 🙂
Waiting is always the hardest part …..
Thanks for keeping us informed – great to hear
All the best
Di
x
Hi
I have been reading these posts and hey have certainly helped me.I recently decided to become a donor (if accepted). My husband is supportive. I am not telling anyone else until I have been accepted. I just feel that I need to do this, To make a real difference. Good luck you you Philip, and a huge thank you to you Di.
I look forward to a successful application.
Mads
Hi Mads,
Thanks for posting and good luck on your evaluations etc. Any questions about it all, or if you just want to chat to someone who has been there, please either post here or you can contact me direct using the Contact link, top right of the page 🙂
So glad the posts have helped you.
All the best
Di
x
Hi,
I gave my left kidney to a friend 5 weeks ago. on leaving hospital I was fine I got the odd twinge but all settled. Abound 12 days later I felt unwell and started with a fever. I took myself to the out of hours GP who checked my urine and found a high blood content for no reason. I was given antibiotics and told to do another a week later via GP. The second sample also had blood in so he sent it off but there was no infection. I went for my check up and told the consultant he checked it there again blood is present in the urine . My consultant told me to see GP and get tested again as he said there has to be infection.Saw GP explained what had gone on and that i had started with pain in left side. He felt it said it was tender but wasn’t sure if it was normal or not and said wait for results.Test results today say not infected but still blood present but he doesn’t want me to make an appointment.
I have pain that goes from just above the drain site and in my back where my kidney would have been. Do I go to Urgent Care or see if it pans out as doctor said. He said give it 4 weeks but im back at work in 2 and still in pain. Sometimes with a couple of painkillers its ok but if I try and bend at waist to look in fridge for example that can have me moaning aloud .
Any advice welcome please the doc doesn’t know and i feel im left in limbo.
I am now
Hi Jackie,
I am no doctor so hard to say what to do, but if it was me, I would go to Urgent care or talk to someone where I can get more investigation as to the cause and cure – someone at the transplant unit I would try to speak to as you would think they would have come across this before? I would not want to wait 4 weeks. Just pain and I would agree to wait, but blood in the urine as well, would have me quite worried. GP’s do not know what goes on a lot of the time with donating a kidney and the associated problems, so yes, i would seek help elsewhere now.
Please let us know how you get on and what the cause is, should you find out.
Di
x
Hi. I am waiting to be a donor myself. I am also a nurse. What I suggest is you contact the nurse specialist at the centre you had the surgery and explain your problem. It may be you have a small collection where the drain was that caused your initial fever. This would cause pain and in many cases is self limiting (goes away on its own but may be painful for a while). This however possibly wouldn’t be the cause of your blood in urine. I personally find nurse specialists to be really useful. Don’t be fobbed. You need an answer to the question …. Why have. Got pain on bending (probably post op pain) and blood in my urine? I wish you luck.
i will be tending to a friend who is donating her kidney to her daughter. i want to do my best for my friend and would love to hear what i might do to make my friend’s convalescence as easy as
possible. with awe and honoring to all of you generous folks out there!
Hi Mary,
Firstly your friend will not be ill, so she could perhaps feel like doing more than she should! 🙂 …. there will be internal stitches to consider and she needs to heal internally. So very important she does not lift anything that could strain the abdomen. Help her to go through her house, especially the kitchen to make sure pots and pans are not right down at floor level, so she doesn’t have to bend right down to get them. If necessary they should live on the kitchen top for the time being. Maybe premake some meals and freeze them so she only has to microwave them or heat up in oven. Things like vacuuming intially are a no-no 🙂 – anything that pulls on the abdomen should be avoided if possible.
Gentle exercise is great – going for a walk etc so maybe you can accompany her on some then you can keep an eye on her 🙂
Help her with shopping, even a small carrier bag with items in could pull on the abdomen. I always feel it is better to be really safe than end up sorry. Some people get on with their life almost immediately and come to no harm. But we have to remember we have had major surgery. An organ has been removed and we have vessels inside clipped off and internal stitches. Last thing we want is to rupture any of those simply because we did things a bit too early. If she feels any pain when doing something, then her body is saying “nope – too early for that :)”.
Sleeping can prove a problem. I found I got stuck in bed the first time, as too painful to get out and also a bit too painful to get in and lay down .. amazing how much we use our abdomen and don’t know it – until we get some pain 🙂 …. so I arranged my bed with lots of pillows piled up so it made a sort of sloping area so when in bed I was not flat but quite nicely raised, so I was past the point of having to use the muscles to the extent of too much pain. Rather like raising the back of the hospital bed. Actually going to sleep laying on a slant of pillows was very very comfortable and I had best sleep I had had in ages at home. In fact nearly 4 years later I still have pillows laid out to raise my upper half slightly.
She mainly has to listen to her body and gradually increase what she does until back to normal.
Some people feel very tired, I did. Others don’t feel tired at all. As long as she listens to her body. If she feels tired – then it is her body saying “I cant heal and do whatever it is you are doing now” 🙂 … so she needs to put her feet up and rest for a while. I used to have a mid morning and mid afternoon rest (sometimes actually sleeping) for about an hour each time. This went on for maybe 8/9 days once I got home but I felt tired for two or three months after.
I am sure there are things I have forgotten to suggest but no doubt other readers will fill you in with their suggestions.
Oh re pain management. Purely a personal preference, but I wanted a little bit of pain there as it then reminded me of how well my recovery was going and also served as a reminder not to do things if I felt the pain. So I only ever took so much pain medication to make the pain more than bearable, but not to get rid of it altogether Some days I even forgot to take any – and yes I hurt. So did not do too much on those days.
Not sure if any of the above has helped or not. I have not read it through, and have had a few interruptions, so no doubt all a bit garbled 🙂
Wishing your friend well and how great she has a friend like you to care for her 🙂
All the best
Di
x
Hi Diane,
I’ll be donating a kidney to my brother in December, and your blog account of the entire process has been very thorough and informative. Being walked through the surgery in such detail really helps me understand the process, and that feels good. Much better than the pamphlets on medical websites!
Thanks for this blog!
Best,
Chris
Chris,
I am so sorry I have only just approved your post, and responded to it.
I have been away on holiday and forgot to take the website login information with me, so I could not do anything until I got back today.
I am so glad you have found the information of help. did you read peoples comments on most posts? They too hold some good info, especially different after effects for men opposed to women.
Anything you want to know please just post on this website, or you can email me direct using the Contact link, top right of page.
Thnks 🙂
All the best for December
Regards Di
Hi Dianne
Way up on the earlier posts someone mentioned about the adrenal and alcohol use. I donated left kidney nearly 8 years ago to my daughter. All going extremely well, thankfully.
What I have noticed about a year post donation was that where i could earlier socially have a few glasses of good red wine in an evening with no ill effect, there are now instances where I feel I need to space the later drinks further apart as they seem to effect me a bit quicker than before. Would the adrenal have anything to do with this? Anyone come across this before, or am just “old” after 50?
Greetings from a cold and sunny Nelson in New Zealand.
Regards Roelof
Hi Roelof,
Firstly I am no doctor, so anything I say is just that … me with words coming out of my mouth 🙂
Before I donated a kidney I was diagnosed with hypothyroidism. Sadly it took 10 years to diagnose me !! During that time it got so bad it then caused adrenal fatique because I became what is known as thyroid toxic. Having got that bad it is a daily battle to now keep on top of it all. It is not hard for my adrenal to start complaining 🙂
Non of this stopped me from donating a kidney though.
I should say at this point I don’t drink alcohol, haven’t since being a teenager and got drunk and swore then, never ever again! 🙂 On special occasion I will have a baileys shot in a cappuccino but that is just say twice a year.
So I cannot give first hand experience of alcohol and the effects after donation vs before.
Here are two links, not that new I am afraid but … one to do with alcohol and adrenal and the other alcohol and kidney.
http://www.livestrong.com/article/75283-alcohols-effects-adrenal-glands/
https://www.kidney.org/atoz/content/alcohol
In reading them both, I sort of favour that it is perhaps because you only have one kidney now instead of two, so the filtering is reduced. Bear in mind we need a certain amount of water to help the kidneys filter the toxins out of our body. When toxins are undiluted it can be harder. Most people think it is just the liver that is affected by acohol, but it is also the kidneys. Or should I say kidney, in the singular 🙂
Of course I am sure age must come into it 🙂 and perhaps all just a coincidence it was a year after op.
Once we start to feel the effects of alcohol, it means it is already starting to do damage or our body is finding it hard to cope 🙂
I am not sure anyone can “guess” as to the answer, as it may even be the liver complaining and nothing to do with adrenal or kidney.
If adrenal, I would have thought you would have other things in your life going a bit wrong also as the adrenal is “in charge” of many aspects of our bodily functions.
Our hormones are exceptionally complicated. To be honest I have only ever met one endocrinologist who actually understood them, and even then did not really know how best to deal with the problems I had at the time! Others have professed to understand them, but then are totally clueless and rely purely on blood results. Anyone who has severe problems with thyroid and or adrenal will know relying solely on the blood results is the worst possible thing to do 🙂
One of the first things to experience if the adrenal is struggling to cope is unusual tiredness. I would have thought, if the adrenal was struggling with alcolhol, you would have experienced other symptoms first during a normal day. Again this is just my personal opinion. I could be totally wrong.
If your experience with alcohol IS to do with adrenal, or one kidney or some other hormone or whatever – proving it could be extremely hard.
All I can suggest, is can you down a good glass of water half way between the wine glasses 🙂 🙂 …. diluting the alcohol in your system may help 🙂
Lovely and sunny and hot here in Swindon, UK 🙂 🙂
I’m due to make an altruistic donation, and would love a bit of guidance on how fit I’m likely to be 12 days afterwards! My partner and I are due to go to an event on the riverbank in Oxford, which will involve walking around half a mile or so each way, with a couple of hours in between. I have a walking stick that converts into a seat (from when I suffered from severe sciatica) which I’ll take with me, and we won’t have to rush so I can take my time.
Seriously, do you think I’ll be up to managing this please? I want to very much as this is an event that’s massively important to my partner. I’m a little afraid of getting there and being unable to get back – there’s no road access, just a path, so I can’t order a cab to rescue me! Your honest opinion would be much appreciated.
Thanks so much for your wonderful account of your experience. Mine has (so far) been unbelievably tiresome – I started the process in January 2014, and here we are, well over two years later and I’m finally going to do it! I haven’t changed my mind, but I’m over two years older (63 now) and wish I’d been able to do it sooner. But the big day is soon and I plan to contribute to your site with my (hopefully positive) experience!
Hi Linden,
Thanks for posting 🙂
Okay how will you feel 12 days after. It various widely person to person. For me I would not have been able to do it. I would have been so physically and mentally tired.
Yet someone else at 10 days was back at work doing half a day (office work).
What is so hard for us (donors) to remember is that we have had major surgery. We don’t feel ill as we never were 🙂 but we have still had a major organ removed and our body needs to recover.
Most of our energy will be going into healing our body, not just from the removal of the kidney but from various instruments being plunged into us along with hands rummaging around 🙂 🙂
What I found was tiredness would suddenly hit me. I could fee okay one moment, then out of the blue … my body would just give out as well as my eyes starting to close. It was my bodies way of saying “whoa down … you are doing too much and I cannot heal so I am shutting you down” haha! Well that is how I saw it.
I cannot honestly tell you one way or another as we are all different in our healing process. Someone else I know was never tired at all … not sure how they managed that but ….then someone else took a month before they could walk to the local shops and back without struggling.
Do you know anyone with a wheelchair you could borrow? Or could you rent one for the day. Then maybe your partner would not mind pushing it both ways and up to you whether you felt you needed to use it on the return journey ??
I personally would not have done it, but then that was just me. My worry would be that you wont be able to get back. When the tiredness hits, it is like no other tiredness I have had before. Also the incision where the kidney was removed, the muscles etc in that area can start hurting. At which point is damage being done:???
What has the hospital said? Ask their advice making clear you wont be able to do half the walking it has to be both ways.
Maybe half a mile is not as far as I am imagining it to be 🙂 🙂 ….. ??
BTW I have just edited your post as you put the date you are going to donate. As you are altruistic i.e. donating to a stranger, it is paramount you protect their privacy and by giving the date then people can quite easily find out who the recipient is :):) So I hope you don’t mind that I have removed it.
Perhaps if you post elsewhere, you can just say “early in 2016” then that wont even specify the month and will be impossible for anyone to discover the recipient 🙂 or indeed anyone they know find you as both as it is very important to keep both your identities private. Hope you didn’t mind 🙂 🙂 – I am surprised the hospital did not say to you not to mention the date in public, normally they do.
All the best
Di
x
p.s. yes later would love to hear how you got on 🙂
Hi All,
I’ve found all of your posts really helpful. I am 10 days post surgery and have been recovering really well. However, over the last few days I have experienced a ‘stitch’ like pain in my left side…where I imagine my kidney would have been! I just wondered if anyone had experienced anything similar?
Thanks,
Alex
Hi Alex,
Thanks for posting. Firstly I am not medically qualified, but I always say … better safe than sorry. It could be unwittingly you have stretched and aggravated the wounds inside or ?? To be honest I would ring your coordinator and see what they say. They may suggest a visit to your GP for blood test or just say … nothing to worry about … rest up.
We all hate to be a pest to our medical advisors thinking we are wasting their time. But when it comes to donating, we really must report everything. Don’t want something that may start off as minor to end up as an infection that forces one to bed rest etc
Please do ring your coordinator and get their advice. They will be able to catch anything early or tell you all is okay just rest up a bit.
Please let us know what transpires as could help anyone else with similar pain.
Hope all goes well
Best Regards
Di
Thank you Di for your quick response! You’re right, I will phone my Coordinator tomorrow! I will let you know how I get on.
Thanks again,
Alex
Hi,
I am two weeks after donating my left kidney, and just came across this blog/forum. Yes, unexpected tiredness is an exact description of what I’ve been going through. But the other major 2 phenomena are (a) having to get up at night once or twice to pee (I never had to before the donation) and (b) often waking at 4-4.30 am to pee and not being able to go back to sleep. Though I make it up somewhat with a nice nap in the afternoon, my total sleep hours are definitely short. I am hoping that once my right kidney gets into shape and can deal with more fluids, I will stop waking in the middle of the night. It’s not fun if you’ve never had to do it !
Hi Danny,
Thanks for posting. It is great for people to share their experiences as it helps other people greatly.
Have to say getting up in the night was no bother to me as unfortunately, I have always had to have a bathroom visit 2 or 3 times each night. Can so understand though that if that has never been the case, must be really annoying to be doing it now.
I sometimes wonder how much of it is to do with the kidney and how much with an operation side effect. I only say that as my partner has just had both knees replaced (not at same time though) and in both cases, he had multi bathroom visits and early hour non sleeping, which he made up for with nap in the morning and afternoon. Yet he has never had to have bathroom breaks before during the night ….so does make me wonder …..
I know it is most important to listen to our body. Because we are not ill, we don’t feel unwell (talk about me stating the obvious!) – so once we get a bit of energy back we feel tempted to use it. then great tiredness can hit …. we have had a major operation even if keyhole and our body needs huge amounts of energy to recover. If we use energy for doing more than “just taking it easy” then our body objects and so hits us with tiredness – its way of telling us it cannot mend and needs us to rest.
Not that has much to do with bathroom visits in the night, I sort of got carried away a bit there … I do tend to ramble on and side track 🙂 🙂
Two weeks is still very early days yet. I think it was past 6 weeks that I was feeling back to normal i.e. being able to go to bed at 10pm (normal time) and not much earlier as I had been doing. Memory fails me a bit ….. but certainly the first 2 weeks were the heaviest as regards recovery and noticed improvement after that. I don’t think I had ny nighttime sleep problems. Quite the opposite I found myself sleeping through most nights and not even one bathroom visit. Cannot remember how long that lasted. In fact they were the best nights sleep I had in years – certainly the first 10 days I am sure ….
We are all different with our recovery … strange how it affects us differently …. with no obvious reason as to why.
I hope you notice come improvement in your sleeping before long, it must be unpleasant when you are not used to it. Do you drink much just before bed? maybe altering your water intake times might help?
Please let us know how you get on 🙂
Thanks for posting
Di
x
Hi,
I donated my right kidney to my husband about 3 weeks ago, open surgery.
Since then I have had many issues regarding my bowels, took over a week to oass anything and since then has varied but never been “normal”. I have a very large lump under my incision which a quick prod by a nurse told me it is probably scar tissue. Is it normal for this lump to be so large? I wondered if it may be causing some obstruction somewhere?
Finally having many “dizzy and weak” moments, even at rest? My legs are like jelly!
Sorry to sound all negative, I have just found many many changes and so many people feel fine after bar the wound, I seem to be struggling. Anxiety maybe?
X
Hi Vic,
Unfortunately everyone’s recovery is different, so not always easy to say if something is “normal” or not. Certainly it does not sound a very happy situation to be in.
Having a nurse say “probably” would not be very satisfactory for me. May I suggest you make an appointment with your surgeon or someone in charge who has experience of the operation and after effects?
Iknow from speaking with other people, who have not had an operation, but have had digestive/bowel issues also have had dizzy spells alongside.
For peace of mind suggest you see someone. If you do, would be pleased if you could report back if any conclusion to it, so it might help others.
So sorry you are having a struggle with your recovery.
All the best,
Di
x
Hi Vic
So sorry you have these problems. If you are on Facebook, I recommend the group Living Donors With Complications, where you can talk to other donors who have had issues after donation. I have found this very helpful.
Hoping things improve for you soon.
Rebecca