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PatG 9 years, 6 months ago.
Well Amy has finally destroyed my kidneys. The doc has said I will be on dialysis ‘within weeks’. She has arranged for people to discuss the various dialysis options to see which is best for me. Bit daunting really but no doubt will come to terms with it eventually . Just hope the Amy stays stable with everything else going on. I go to NAC at the end of this month so hope to have that confirmed. I know some folks on here also have kidney problems, I am especially thinking of Jo who I know has battled this as well as MM. BUT – we are all still here and fighting! Long my it continue.
Hi Pat,
So sorry to hear your latest news. Also sorry that I have only just seen your post….
I seem to be going down the same path as you too. I fully expect my kidneys to have taken the brunt of all this chemo, and wonder whether my SCT will be postponed as I believe yours was?? I am also visiting the NAC mid December for my 6mthly check up. I hope your news is good and that the proteins are stable. Good luck with whichever dialysis path you decide on & Keep strong.
Sharron x
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Hi Sharon,
Still no further along dialysis route but SCT is definitely out of the equation. Added to everything else I seem to have had a heart attack at some time ?? How do you have a heart attack and not know it for heavens sake? It was discovered following an ECG taken at GP surgery on a yearly MOT check up. Now I am having cardiac investigations and also lung investigations as I have been getting more breathless recently. Apart from all that I am feeling quite well really. A bit lacking in energy but overall OK. Hope dialysis is based on symptoms and not on eGFR . That way I should be able to last a bit longer. I am at NAC on 25th so hope to get a better picture there. A little bit worried as my monthly blood test showed FLC rising slightly but I really can’t dwell on any of this. To take it all on would bury me I think. I just take the immediate problem and try and get that sorted.
Anyway Sharon, I hope that your kidney outcome is going to be better than mine, but as I am 69 now I think it may be different for you regarding your SCT – and at least we are still
here and fighting eh?
Pat xx
Hi Pat,
Your positivity is extremely refreshing, I am far from positive in fact very glum about it all I’m afraid.
Heart attack?? – unbelievable, its prompted discussion in our house I can tell you. I hope they get to the bottom of why etc……
Your breathless symptoms are interesting. I too am really struggling, the slightest exertion renders me breathless. I do carry excess weight, but its got much worse since I started on the Chemo early Aug. So I will be mentioning this at my NAC appt. At my last apt they said I had no Amyloid. My diagnosis is LCDD, which apparently goes hand in hand with Amy. I am beginning to think I am going down the Amy path rather than MM. Do you mind me also asking if you have what I term “Kidney Breath”. Its like a chemical smell which only I am able to detect coming from my exhaled breath. I have recently had several oral hygiene appts , now use an electric toothbrush, nightly flossing etc….So I and my kidney consultant are at a loss as to what it could be or what I’m even talking about. My partner assures me I don’t smell. Its so pronounced during the night that I wake up. I also drink gallons of water, as instructed. Something else for the NAC list.
Maybe I need to take a leaf out of your book re taking too much on board, I think it could well bury one quite easily.
Wishing you all the very best, and I do feel for you…….please try and keep me/us updated as your own personal AMY journey is clearly relevant to me….
Sharron x
I had to look up LCDD and now I can see the worries about your kidneys. But you know renal failure will not kill you, that’s what dialysis is for! Not the most pleasant of paths but much much better than the alternative.
I found I was much more breathless while on VCD chemo but that has got considerably better until a few weeks ago. I have to have a special radio active type x-Ray to rule out pulmonary embolism as this can be a complication with kidney problems. The doc is just being very cautious as nothing was heard on examination and the ordinary x-Ray did not show anything. She has started me on soluble aspirin just in case!
I haven’t noticed any funny breath smells Sharon and I’m sure that if it renal related the renal docs would have come across it before now. Could it be a side effect of the chemo? Is the chemo affecting your appetite as well? So many side effects to these drugs and we all react differently don’t we?
Just come back from bingo (my Friday night treat). Didn’t win a thing but a good old natter with my friends is worth its weight in gold.
Keep positive and don’t try to eat all the elephant in one go. Take it piece by piece.
Xx
Maybe its eating the elephant that’s causing my “chemical breath” problems….. I am sure you are right about the kidney bods. Back in June 13 when I started noticing a chemical smell, we thought it was our gas fire, called out the gas man to test it, it was fine. Then realised it was me!!
Yes, chemo is affecting my appetite, no desire for chocolate, and if I do have something sweet my chemical breath l worsens & if I don’t drink enough water . I do try and drink at least 3L every day….
Hope all goes well at the NAC and that you get some answers
Sharron x
Hi Pat,
I hope you don’t mind me butting into this – I was diagnosed in November last year with amyloidosis in the kidneys and multiple myeloma. I have been wondering how you are as you have not been on the forum lately. I had CVD the same as you and may just have to do the 6 cycles (finishing today) depending if the FLC numbers stay down. I will be back at the NAC at the end of this month. Still have loads of protein in the urine though so just waiting to see what happens. I must say I really did enjoy reading your posts as you have a great sense of humour and positive attitude.
I hope all is well with you.
Best Wishes
Rosemary
Hi Rosemary, lovely to hear from you and hoping the CVD has done the trick. My biggest problem at the moment is my kidneys and not the Amy although the light chains are rising slowly again. General concern us of opinion is that this may be due to the kidney problems and not necessarily the Amy. Will wait and see. I dialyse 3 times a week but my biggest worry is my lack of appetite. Very worrying as I was very slight before. Have to make sure the plug is in the bath now just in case I get flushed down the drain. Seeing the neph doc on Monday and hoping they have a solution. Apparently it is quite common with kidney patients. Not due at NAC until November so the picture should be somewhat clearer by then. Don’t post much on here but I do follow the stories. Everyone’s journey is so different but so similar. Hope you get the very best news at NAC. A friend was telling me about a cinema just down the road from the hotel that serves the most delicious teas. She couldn’t remember the name but I shall go and explore in November.
Good luck and keep well
Pat
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