But you don’t look sick

I get this a lot. If I speak to anyone else that has kidney failure, they tell me too that people are always amazed that they’re sick. Currently the only thing that indicates that I am sick is the plaster on my neck. However this does not even begin to cover the severity of my illness.

I have so many symptoms that are not visible and that is basically how this disease goes undetected for years. So I am here to give you a reality check. Never tell someone who has a chronic illness “Oh but you don’t even look sick”. I distinctly remember going out one night and someone said to me “You look so pretty, I can’t even tell that you’re sick”. I got quite annoyed and replied with “Yeah but under all this concealer is dark circles and sunken eyes”. I walked away and that person has never made a comment like that again.

So here is a list of things I deal with daily, even though you might not see it. I have also listed how my doctors have treated these symptoms. Please remember that everyone is different have they will have their own symptoms.

Fatigue

Do you even realise that it is difficult for me to wake up in the morning? There are many things that cause my fatigue. I have low iron, low hemoglobin and high creatinine. These all play a role in making me feel completely exhausted. I yawn all the time but I try not to do it around people to be polite. I wear concealer so that you do not see the dark circles under my eyes. I literally fall asleep mid conversation when I get home from work. I struggle to walk as much as I used to. I’m constantly needing to take breaks.
Treatment: For the lack of iron, I take iron tablets and I am given iron via a drip once a month. For the low hemoglobin, I use Arenesp which is a protein that helps your body produce red blood cells. I receive this treatment twice a week, via an injection in my stomach (OUCH). For the high creatinine… I guess I need a new kidney ๐Ÿ™‚

Swelling

Some days my feet look like little balloons because I decided to drink 1.2lt of water for the day instead of the 1lt that I am allowed. Sometimes the swelling goes up my legs and that is just uncomfortable. Putting pressure on your foot hurts.

Treatment: I use water tablets when it gets really bad.

I don’t have any pictures of my swollen feet but swelling can occur anywhere (like your eyes)

Stomach problems

I am on a ton of meds. I have one for my skin, one for iron, two for blood pressure and the list goes on. All these meds have their own side effects. I have had the worst stomach issues since I got sick. There was a time I threw up every morning when I woke up. This went on for about three months and then it magically stopped (thank goodness).

Treatment: Changing meds until they work for you

High blood pressure

High BP causes its own list of side effects. From headaches to eyesight deterioration (read about that here), I have had so many symptoms so far that I couldn’t even begin to count them. Sometimes my heart starts beating so fast that I cannot concentrate on anything other than trying to control it.

Treatment: High blood pressure medication. I was on a very mild dose in the beginning but that stopped working and I ended up in hospital (read about that here). I now take two tablets to control my BP, which seems to be working. Dialysis also seems to be helping quite a bit with keeping my BP under control

Diet restrictionsย 

My diet is restricted for three reasons. The first being that I can’t have too much salt, as it pushes up my blood pressure. Can you imagine cooking without salt? Rice without salt is just plain and nasty. The second reason is that I have to limit foods that are high in potassium and phosphate as my kidneys cannot process them. The third reason is my gout. I am so scared to trigger the gout again that I prefer to avoid all food that cause gout. You can read about my gout experience here.

Treatment: There is not much I can do about this but I do take a phosphate binder with all my meals. Phosphate is found in most foods so it is quite difficult to avoid.

Itchiness

Due to my kidneys not working, it cannot filter out all the potassium I take in. In turn, this causes me to itch. Its horrible. Can you imagine sitting in a two hour meeting and all of a sudden you really need to scratch yourself?

Treatment: I was given a tablet to take for this. However, it had other side effects and I had to stop taking it..

Dialysisย 

The first type of dialysis I did was peritoneal dialysis (you can read about my experience here). This involved placing and draining fluid into my stomach every 4 hours. Remember, I have a full time job. So during my lunch break I would have to go into a private office and do this. It became part of my daily routine. After a while I thought to myself, why should I hide? I’d rather have someone ask me a question about my dialysis and then explain the situation than to hide in an office where I felt uncomfortable and restricted. Currently, I do hemodialysis in hospital every Tuesday and Thursday evening as well as Sunday afternoons. So if I ever wanted to make plans during that time, I can’t. I have to be at the hospital for 4 hours.

Peritoneal dialysis in action

I could probably list a lot more but I will update this post as I remember more symptoms. Memory problems is another symptom that I deal with on a daily basis, actually.

So in a nutshell, everyone has their own battles. You will never really know what someone is going through, even though they look “good”. Always remember that. Try to be sensitive around others and be aware of the things you say.

 

11 thoughts on “But you don’t look sick

  1. You are one amazingly strong lady whom I’ve had the pleasure of meeting and dealing with. Thank you for sharing your jounery and i wish you and your family all of the very best in the months to come.

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  2. An inspiration.. My best friend is only 22yrs old and she has kidney failure shes on dialysis thrice a week.. Was deathly sick 2mnths ago went to hospital for lower back pain amd ended up in a coma.. Turned out she had an E colli urinary tract infection.. Shes much better nw.. Wil tell her about ur amazing blog…

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  3. Assalaamu Alaikum Amina. A transplant patient since 02.10.2009. Reading what you have been through is mind boggling yet you remain so positive is amazing. Just a word of advise from my experience is instead of drinking water you can have Ice with a little lemon added when you make Ice this will satisfy your thirst. Please remember that one litre of water constitutes one kilo body weight. Avoid all yellow veggies n fruits. Please be kind enough to keep updating us on your progress INSHAA ALLAH through the koedrat of the Almighty you will soon be fine.

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    1. Wslm Mohammed. Its so good to hear from others that have had a transplant?
      I hope you’re doing well. Thank you for the advise. I absolutely love ice and I have it all the time. I haven’t added lemon to it before but I definitely will try that. I am actually very good with my fluid intake and I am rarely overloaded at dialysis. I will definitely keep updating the blog

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  4. Salaams Amina,

    Your blog is so informative and also inspiring to others with same condition.

    Wish you and your Dad all the best with operation and the journey to full recovery. May Allah SWT grant you both speedy Shifa In sha Allah Ameen.
    In our Duas.

    Was Salaam

    Mariam

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    1. Hi Maryam. Thank you for the kind words. Inshallah ameen everything will go well. Shukran for keeping us in your duas.

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