amber rahim

Chronic illness: the parts we don't talk about


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Rock and a hard place: Back to a PEG?

for the last 3 and a half years we’ve been going to the hospital to get Fs Mickey button changed.

Now, technically, we can do it at home. Unfortunately the first time we tried it F had an infection in the wound and it really hurt. She freaked out and since then Nurse H does it. She’s the specialist stoma nurse and F has known her almost all her life.

it was going well until today. For various reasons nurse H isn’t allowed to do it anymore. Today I was getting trained and doing it with her and it all went tits up.

F has got really strong stomach muscles. (Although according to her she hasn’t because you can’t see the “stripes on her tummy”. What can I say? She obviously has a great role model in me, not).

She was tense. Tense muscles contract. I tried to pull it out and it got stuck. Nurse H took over and she had to practically yank it out and shove the new one in. That’s not how she did it, she’s a professional but it was almost impossible for her to do it.

So after 3.5 years building up to F allowing me to do it, we are back to square one.

Nurse H’s suggestions? Back to the child psychologist to help F get over this fear (of something that is actually uncomfortable and sometimes painful).

Or go back to a PEG. This can stay in for years (but you never know how long) but requires surgery to put in and change. And there will be a tube dangling from her body again.

Rock and a hard place.

(I was going to call it Hobsons Choice but I googled. What we have is a dilemma (2 unappealing choices). A Hobsons Choice (this or nothing) might be easier. Then I wouldn’t need to decide.

so, what to do?

Unpleasant experience every 2-3 months, potentially scarring her psychologically (some more).

Or surgery every 3years or so. And having to be careful every minute of the day so that the dangling tube doesn’t get caught on something.

Rock and a hard place.

The coach in me is saying “that’s not a helpful perspective” and she’s right. But I need to find some energy so that I can let go of this very stuck and comforting perspective (as long as it’s a rock and a hard place it’s really easy to put off making a choice).

I think it’s time for some Dr Seuss

WITH YOUR HEAD FULL OF BRAINS AND YOUR SHOES FULL OF FEET

YOU’RE TOO SMART TO GO DOWN ANY NOT SO GOOD STREET


15 Comments

You know your illness is rare when…

1.  The doctor gives you medicine, hoping for the side effects.

There are no medicines designed for Bartters or Gitelmans Syndromes (B&G).  Every patient is on a mix of medicines known for certain side effects and we hope that you will “suffer” from them.  For example, diuretics can lead to increased potassium levels so most people have to be careful.  Us B&G folk?  That’s what we are hoping for!  We lose potassium like our kidneys are leaky buckets and we’ve got to plug the holes.

2.  Most specialists haven’t even heard of your condition

Sadly, many people with B&G are being treated by physicians who don’t really know that much about these syndromes.  Often you are the nephrologist’s first patient with this condition.  Yay! You get to be a guinneapig!

3.  You know everyone on the FB or Yahoo support groups by name

There just aren’t that many of you in the world.  Genetics Home Reference estimates it at about 1 per million people. How special is that?

http://ghr.nlm.nih.gov/condition/bartter-syndrome

4.  Prognosis is not known.

There is such limited information that they don’t really know what the future holds.  “If you follow your treatment, you will probably be ok”.  Um, hello?  Remember number 1?

Well, to be fair, who does know what the future holds for them?

Bartters Syndrome, the kidney disorder that my daughter has, is a strange illness and pretty young.  It is named after Dr Frederic Bartter who first described it in 1960.

There are some standard treatments but they don’t really know why they work – just that a lot of the times, they do.

We have had 6 very “interesting” years with the first 3 being a relatively experimental approach to finding a good treatment plan.  For the last 3 years her condition has been stabilising so now finally, at the age of 6, she is doing pretty well.

Now we are at the tough choice time.  Do we change anything in her treatment plan?

For the last 4 years we have been giving her potassium and sodium supplements on an hourly basis.  That’s right.  We give her medicine every hour, of every day.  (We are not martyrs to her illness, we use a medical pump at night).  It is tiring for us but we have developed an amazing ability to know when an hour has passed, without looking at a clock.  In my science class at school I couldn’t even estimate when one minute had elapsed.  Now I am a time master.

More importantly though, it interrupts her day.  Can you imagine someone coming up to you 12-14 times a day asking you to stand or sit still?  How she stays so patient with it I do not understand.

She is stable now, so we could change to say, medicine every 2 hours.  But I hesitate.

  1. Can I retrain my brain to this new schedule?  I might actually have to think about what I am doing!
  2. More importantly, what if this de-stabilises her?  Is the potential benefit of fewer interruptions to her day (and ours) greater than the potential risk to her health?

I just don’t know.  I think I’m going to enjoy this feeling of control a bit longer and leave things as they are.