Is it ok?

Well,here you are,minus a kidney.

I bet you’re wondering if everything is ok.You’re worried about at least one thing that never used to happen to you.

I bet you were told everything will go back to normal,you’ll be your old self in just a couple of weeks,don’t go jogging just yet,har har.

I bet at least one of these has happened or is happening to you:

Fatigue: this is a very common symptom.The question is,is it time-related or donation-related. You will feel very very tired for about two weeks post-donation. This is normal. If everything is fine,you will feel tired for about three months and then slowly recover up until about a year post-donation. This is just the basic recovery time for any surgery,it takes about a year. But if a year goes by and you still feel listless,fatigued,unable to muster a fraction of your former energy up,that is not normal. You need to see if any of your blood values are low (iron,potassium,B vitamins,sugar,cortisol),or high (TSH,ACTH,creatinine,sugar) and you need to check your blood pressure at the very least.

Pain: it is perfectly normal to feel pain,whether you’ve had keyhole or traditional nephrectomy. Pain is time-,quantity- and quality-related. Most of the big pain should be gone by a month at the latest. This is basically the pain of the actual physical injury you’ve undergone. You will keep getting sharp twinges,some of them may be quite startling,especially if you forget about your incisions and move suddenly or too far. These will grow farther apart and less vivid as time goes on and should be really unfrequent by around a year & a half. But if you have excessive pain at any point or if the pain’s strength or frequency doesn’t diminish with time or especially if it gets worse,that’s not normal. You need to have proper diagnostic tests done (ultrasound,CT scan,MRI) as well as blood tests at the very least to find out the cause.

Memory problems: believe it or not,this is an unacknowledged side effect of anesthesia and the brain fog it causes can last for the year it takes to recover from the surgery. You might find yourself blanking out before you finish the sentence or fishing for simple words that seem to have fallen out from your head. Walking into a room & forgetting why,forgetting appointments,pills,the day of the week,the shopping & forgetting to write the shopping list are all part of this post-donation mental fuzziness. The good news is,it gets better. While it’s immensely frustrating,especially if you are the type of person who had great recall pre-donation,it will eventually subside. In the meantime,practice memory tricks to help with recall & information retention. If it doesn’t pass or get better,it’s not normal. You need regular & hormone blood tests done at the very least,especially if you’re a woman,as it might be a menopause symptom. People with kidney disease tend to get menopause earlier,it’s not a far jump to link it to the suddenly lower kidney function of the kidney donor.

‘Something is moving’: now this is something nobody tells you. When they take the kidney out,it leaves a space inside you. Your other organs will rearrange fairly quickly to fill this space. But until then,you will feel things in motion inside you,especially if you try to turn in bed. When you do that,you will feel the contents of your insides literally shift from one side to the other. This is an extremely unsettling feeling but it shouldn’t last more than a couple of weeks.

Bleeding on & off (women): your body was not happy with the catheter,that’s why. Normal for the first one or two weeks. If your period pattern is disturbed afterwards,it might be settling into a new pattern,or if it persists long-term,it might be hormone imbalances & then you need blood tests to check them out.

‘I don’t know when I need to go pee’: for a few weeks afterwards,you might have trouble feeling the urge to ‘go’. Not in the sense that you’ll have an accident (if that happens,especially more than once,seek help!definitely not normal),but in that you might feel a bit numb and be less sensitive to the ‘I gotta go’ tickle. Just make regular trips to the bathroom until your sensations down there come back. Also,you will be constipated after any surgery both because of the anesthetics and the painkillers (even extra-strenght Tylenol will bind you up). Keep taking your laxatives and DON’T strain!

Skin issues: as you continue to recover (hopefully),you might notice your skin is different. You might break out in acne,face/chest/back/elsewhere. You might notice your skin darkening in unusual places. It might be getting drier or you might sweat more. Skin issues are a grab bag of minor & major causes. Newly out-of-balance hormones might cause acne and so can excess toxins and waste from your now diminished kidney function. Vitamin deficiencies (and yes,there are vitamin deficiencies related to kidney donation) could do the same. Excessively dark spots,especially under arms & inside of joints (knee/elbow/groin) & dark palm lines could be a sign of adrenal insufficiency or even failure,especially when coupled with excessive lethargy. What you need is to test your B vitamin levels and your cortisol/ACTH levels at the very least…B vitamin deficiencies can cause dry red patches around the mouth and acne while the aforementioned dark areas can be a harbinger of adrenal problems. Also,low calcium levels might indicate a co-existent D-vitamin deficiency which has been proven in kidney donors.

Joint pain: this is something you might not notice until years after. But if you get pain in your big toes or joints or even hip and your uric acid levels are high,you might have gout.

‘My shoes don’t fit’: if you are a woman,this can be either a devastating or fortuitous side effect….depending on whether you love your current shoes or would you be happier shopping for new shoes. In either case,your one lone kidney now has to deal with all the fluid load by itself and this results in an increase in your body’s retained water volume…which results in feet that might be a size larger post-donation,much like pregnant ladies. In addition,your feet might intermittently swell,making flip-flop season look very desirable. Can’t be helped and is normal as far as I can find out.

Dizziness: check your blood pressure! It might be too low,especially if you tend to experience dizziness after standing up or standing too long (too long depends on you,by the way). This is not normal. You need to get your blood pressure and blood electrolyte levels checked.

Bulging at the incision: this could be a sign of a hernia and should be checked out by a healthcare professional.

‘My legs itch’: have you noticed more spider veins (those little red clusters of veins) 0r more prominent/more numerous varicose veins? Well,guess  what,spider veins & varicose veins can itch! These unwelcome guests are probably the result of the same extra fluid load that makes your feet swollen…& you’re kind of stuck with them. You could try the traditional therapies for old-lady legs…put your legs up,support hose (yes,joking,kind of),don’t stand too long,etc…..

Leg cramps: annoying and inconvenient,probably the result of blood deficiencies…low iron,potassium,vitamins,red blood cells.A blood test will tell you what you’re lacking. In the meantime,don’t stretch too far in the bed and the charley horses will stay away.

Worse allergies: your immune system can go into overdrive after a surgery as it heals your body. This can result in temporary increases in allergy reaction severity,triggers or frequency. For example,you might have been fine with Fluffy the cat pre-donation but now you get a bit itchy around her. A good kidney-safe allergy medication is Benadryl,this is what ESRD patients use,too.

These are some common things you will experience after kidney donation. You might not experience all of them or you might experience other things,as well. They are the results both of having general surgery and having a kidney removed. While it’s perfectly normal to have side-effects after surgery,if something is really out of the norm for you,if you feel ill or if something really worries you,DO NOT HESITATE to consult a health professional—or as many as it takes to get the answer. If you have a follow-up team,make use of them. If the answer you get is unsatisfactory,get a second or third or as many-est opinions as it takes. Remember,just because you have given up a kidney & now ‘should be fine’,that’s not necessarily true and it’s not an excuse. While side-effects from surgery and kidney donation are unfortunately normal, health professional ignoring those side effects is NOT normal. If you feel unwell,get help & don’t stop trying until somebody does help.

IMPORTANT: if soon after surgery you develop a high fever,if your incision(s) is hot or there something wrong with it,IF YOU STOP URINATING at any point down the road,if you gain a lot of weight really quick (it could be fluid overload),seek help fast!!!!

Fourth truth: side-effects are the norm but that doesn’t mean it’s ok to for the side-effects to make you ill…and it’s not ok for doctors to ignore the side-effects ‘because it’s normal’.