Family · Me

The elephant in the room

Kidneys in a jar by Your Organ Grinder available on Madeit

Not long after we had Cadel, Dan started to notice that he was having a lot of headaches and back ache, and just generally felt lousy a lot of the time.  We went to one GP she said he needed to loose weight and de stress.  By the time I was pregnant with Hamish he developed a flu that seemed to linger and linger, He went to our regular GP, who took his blood pressure.. it was in the extremely high range.  She did some tests and detected signs of kidney damage, and referred him to a Kidney specialist.

They nephrologist ran even more tests including a biopsy and diagnosed Dan with IGA nephrology, a form of kidney disease.  Most likely he had it for 10 years before it was detected.  This means that his kidney is deteriorating at a much more rapid rate than the general population.  At that time they put him on blood pressure meds to slow the damage to the kidney.  We changed our diet and lost loads of weight, and generally got healthy.

Fast foward to a recent routine check up at the kidney specialist, tests showed that Dan’s kidneys are still deteriorating at quite a high rate and that basically he is too have dialysis within 5 years if this doesn’t slow down.  The doctor puts him on more meds, an immune suppressant and steroids.  He is to limit his salt intake as much as possible.  Dan is only 32.  Even if he does well, he will certainly need to have a transplant within the next ten years.

In the last couple of weeks I have struggled with this news.  It all seems so unfair.  He is a young man and healthy, we’ve never smoked, or drank excessively.  And above all we have two small boys that need their father around.   He now has to take 8 tablets a day.  I’m struggling to find meals that we all enjoy that contain no salt or almost no salt.  Even the most basic ingredients tend to have a fair amount of salt.  Tinned tomatoes, stock, dried beans etc.  Its seems the only way to avoid copious amounts of salt is to cook everything from scratch… thanks goodness I am not working at the moment and have the time to do this.

Luckily Dan has been a rock, he is calm and has the most amazing will power when it comes to his diet.  On the other hand I have been worried constantly, you see I’m not a fly by the seat of my pants kind of girl and am very anxious about the future.  Most of all the lesson I am learning now is that I need to live in the moment.

I call this the elephant the room because I feel like sometimes my blogging can be a little superficial, I haven’t talked about so many issues that are important to me, as I don’t want offend.  It seems like talking about politics or religion at a dinner party.   On the other hand though this is something that I am really struggling with.

Anyhow now its out there, and I can go back to blogging about cushions, softies and overlocking.  Thanks for reading and please feel free to slip some salt free recipes my way.

Rachel

Ps how cool is the kidney in a jar… I’ll be buying one for Dan, its available here

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12 thoughts on “The elephant in the room

  1. Rachel I am so sorry to hear of Dan’s health problems. As you know I have a child with chronic health problems and it is a major stress. One thing I have learned is that I have no control over what happens to Eva and you do need to just let it go. One thing Dan has in his favour is that he is young and has such a great outlook – that will serve him well.
    Thinking of you!

  2. The body is a complete mystery at times isnt it and we never know what is going on inside do we. I am sure that when the time comes you will be Dan’s rock and everything will turn out well. It is good to air things and let others give you a different outlook on a worrisome problem. I am a born worrier and no matter what it never stops, I just try and live with it. My partner on the other hand always says everything will turn out just fine and it normally does in the end. I do agree that most illnesses are so unfair to the people who get them and I just wish there was something to change it all but at least Dan has good health professionals looking after him. Hugs to you and your family xx

  3. Hi Rachel
    I have enjoyed reading your blog and can totally understand your feelings about sharing personal info in such a public space.
    My daughter was born with a single kidney and I have been very vigilant in keeping salt out of her diet, and this does mean cooking mostly from scratch!
    Luckily she has been very healthy from day one and I sometimes forget she has only one, but you are right in describing it as like an elephant in the closet, and this has made me think I shouldn’t get complacent about her health.
    Thank you so much for posting, sending good vibes toward you and your family.

  4. Nice to see you have retained a sense of humour with it all {ie. the gift!}.
    I can’t imagine how scary and hard this would be ~ but I do know that feeling of wanting to ensure the father of your children is going to be around for them.
    Thanks for sharing Rachel. {hugs}

  5. Rach, I’m sorry to hear about Dan’s health. I hope that talking about it helps you.

    I have noticed lately there are more salt reduced and no added salt products available on the supermarket shelves. It’s such a difficult thing to avoid in food though and I feel for you.

  6. Ooh, that really sucks, I feel for you so much – and it does seem unfair when he is young and lives healthily and there are plenty of people who abuse their bodies and then their kidneys are fine!

    Don’t feel bad for venting and sharing non-crafty stuff, sometimes it just feels better to get things off your chest.

    And belated happy birthday!

    xx

  7. Slowly catching up on my commenting after a week down with flu – but really wanted to add my commiserations to the pile. Dan sounds like a real trouper. You’re right – it isn’t fair – unfortunately this life is not. People often do NOT get what they deserve (good OR bad – which is why I hate the popularisation of ‘karma’ as it suggests that they do/will. It’s codswallop). Dan doesn’t deserve this and nor do you and your family – but I hope that you do receive good, loving support and care as a family from those around you.

    I can’t quite imagine the stress of having a serious illness floating around in the background all the time, and the ‘ifs’ and ‘buts’ that must come up because of it. Cooking without salt also sounds like a hard thing to me – I guess like other food issues it’s possible to adjust, but frankly I think you have your work cut out for you with those two small lads you have to feed.

    So anyway – thanks for sharing about it. I hope it eases the fears a bit… I’ll also pray that Dan’s kidney degeneration slows right down, responds well to his meds, and that when the time comes there will be no problem finding a donor.

  8. Thinking of you both. Each day you can only look forward and do your best…. though sometimes you probably just want to hide your head in the sand! Thank you for sharing a very personal time. x

  9. Rachel I was so sad to read this. I don’t know how you stay so positive. Well done, keep your sense of humour and best wishes to you all.
    Can I suggest that everyone who reads this goes to donatelife.gov.au and helps all those people in Dan’s position.

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