kidney failure: Parathyroid problems

3x week by 4 hours +transport, waiting etc..

One Place for one machine, in a room of ten.
One Place for one machine, in a room of ten.

Dialysing

How long have you been dialysing?

  • New - Under 3 months
  • 3 to 8 months
  • 8 to 12 months
  • 1 to 2 years
  • 2 to 5 years
  • 5 to 10 years
  • More than 10 years
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Some patients go straight to dialysis depending on how bad the symptoms are when found

When diagnosed were you put straight on dialysis?

  • Yes
  • No. (pre dialysis, treated with pills)
  • Self management / palliative care -don't want dialysis/ transplant
  • I got a transplant quickly
  • I'm still considering my options.
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wanting to avoid having parathyroid removed

The doctors explanation of the parathyroid gland. Is basically "it sits in the neck next to the thyroid. And when working helps to control calcium deposits etc. When ill 'it overworks and too much calcium is produced'. It seems logical that the less the body has to begin with the less it can re-produce or use. So, as with controlling chocolate, potato, mushroom, tomatoes etc. in the diet. So too these foods can be watched. I've lost count of the times I was told off for drinking all the milk. And I had cheese just because it was there and easy to make. I'll never forget the bacon and melted cheese sandwhich (mmmmmm......)

When I was diagnosed renal failure. The first thing I did was look at my diet and make changes. Though I didn't always do the right things, and/or for the right reason. Over the years I've become very competent at knowing what I need. Here is a warning about getting too much calcium with renal failure. (Nb. Renal is medical word for kidney)

All junk food went out, stopped!

burgers, fizzy pop, milk, ...

One thing that did not go was chocolate. Though I was advised to eat those with less chocolate inside, examples: twix, crunchie, etc. ...I can't quite get off the milky ones. I do however have good ways to cut down calcium.

Milk: Instead of coffee or tea, unless I'm out I boil some water and sweeten to taste. I gave up on the idea of sweeteners, stayed on sugar to help remove the potassium in the chocolate. Eventually cutting down realistically from two to one which I kept with the water (ie. not the occassional tea when out!). I have since moved on to Golden Syrup which is a more natural way to get fructose-glucoze as is Orange/s. (The latter being a good source of vitamin C.). I only pick half a teaspoon and wrap it round while the excess falls back into the tin.

Butter/Marge. Never got into the taste of Margerine, so dropped that one early upon moving out and fending for myself! I gave up on butter too because I found it harder to spread. It was impossible! The bread ran off the plate or broke in two etc. Now, heres the important bit. Another patient said today they were having to have their parathyroid glands removed because the anti calcium tablets weren't working. He was upset as he was told this affects singing. (obviously a keen hobby of his). Then I realised my dry sandwhiches habbit may help him. And so proceeded to comment on my diet. Though I'd stopped not knowing the issue that often comes later on as many do. I seem to have inadvertantly slowed this symptom down at least.

Cheese. Being derrivatives of milk also therefore high in calcium. I stopped this early on, again for another reason. Dyspepsia/Acid Reflux. Another food I love particularly in Pizza. I just avoid cheese now. Was lucky to find a pizza chef willing to make me a 'cheesless pizza' though he wasn't found easily. I only really like pepperoni anyway. So now I have a meat feast with pepperoni as extra topping. But only as a treat because there are tomatto based ingredients as well. I haven't asked if they can drop this yet. We did experiment with onions though -nice change.

I now occassionally have burgers without cheese! I never have burgers with cheese, I find I can tolerate the salad and onions better. (not tomatoes). I don't have fizzy pop with it though as this seems to worsen my feelings of being bloated. Try Ribena/diluted drink. But also there are still kiddie pops. That is still drink, rather still here. And it's lucky they are as I can't get over my taste for cola (which has Quinine in thus helps to remove cramps)

I remember having to have my phosphate binders changed from calcium based to those without. And this was after a week binging somewhat on pizza with cheese. So cheese and/or butter are no longer in my diet, except maybe bonfire night with baked potato. But not overdoing it like i used to. I have since tried baked potato dry and it isn't that much of a sacrifice. And I haven't heard the doctor complain since!

Breakfast. I like Dry Toast. When it comes to cereals, I have been known to put tea on Rice Crispies (warm). As I don't like them without Sugar, and lots of it. I managed to find a taste for Porridge, Weetabix without milk. Using Golden Syrup for taste.

I hope this helps any-one and every-one to avoid what maybe an in-necesary operation.


Some other issues that kidney patients face

If your unit gives out any written information. It is very worthwhile to read it. Read it as soon as possible, and come back to it a few times as this is a big life altering thing. Relax though it is not the end of the world. Counselling may help, this doesn't have to be a renal orientated counsellor in the long term; I found it made no sense to put all my eggs in one basket. And when the nurses became quack psychologists I felt the rest of my freedom was in danger of being taken. I do tend to daydream... Look up my other hubs below for more information.

The kidneys, though considered secondary organs by many play an important role in the functioning of the body. When they fail, or gradually work less and less over time. This shows with symptoms. Your information pack will give details. If you haven't got one ask your specialist or their secretary, a nurse or at reception at the Pre-Dialysis Unit.

I had/have an iron deficiency. Pills didn't really work. Alternatives are an injection into the arm, or through dialysis. No treatment (mankind made) for anything is ever better than good health, but the Arenesp I get through dialysis is just about the best I can expect. Much better than nothing -or in this case tablets.
If Iron levels get too low, this affects blood counts, particularly red cells. This may require blood transfusions. These are best avoided if possible. Because although every possible effort is taken to minimise risks, you never do know.

I had too much water (A body weight contributor) taken off me through my blood. Particularly when I started dialysis after 8 years on pre-dialysis. (treated by tablets, and ever increasing visits to the unit as my condition progressively got worse). Water tablets take plasma water, (Plasma is in the blood) as does Ultrafiltration through the dialysis machine. I look back and feel these were unnecessary treatments in my case, and to make things worse these have stopped my body's own processes from removing any urine at all. (beyond the occassional drop!)
I strongly feel much more research needs to be done on this issue. Even by patients as I beloieve the way I was treated was an attempt to manipulate me to have a transplant. Despite my stating clearly and adamantly from day one that I didn't want it. My position remains unchanged 10 years on! -Long after the best possible time to have one. Which is said to be before having to start the dialysis course of treatment.

Much of dealing with this illness requires TRUST and ACCEPTANCE!
Trust and hope that people know what they're doing, and that nothing goes wrong, and Acceptance when something does go wrong. And trust again that all that can possibly done is and will be being done. Not easy in the current climate of money issues; under funding, under staffing, even poor vetting in some cases. Not a good time to be ill. But be brave if you've chosen treatment then you've clearly decided there's things you need to live for. I'm trying to help others with my experiences, some stay around for family and friends etc.
For others it may be fear of the unknown, if where we go after this world becomes one of your questions keep seeking your answers in any and all relevant places. I was born and am Christian, but being CofE. doesn't now mean I turn my nose up at Catholics, all are a mixed lot with good and not so good everywhere. There is quite a broad spectrum to be found. I even listen to the occassional Budhist -If I think I have something to learn from them or can help them on their way. All this from a close minded CofE. family background.
It shows good things can come out of bad things happening! And Yes. Bad things happen to good, not so bad people!

Well, if things go wrong, you can always spread the word... Through blogging, perhaps?

Good Luck!


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Absent Friend 6 years ago

If you put calcium in, there will be more fuel, more for the body processes to work on and increase, is that it?

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