I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Ken Shelmerdine on March 05, 2013, 06:10:38 PM
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Sorry this is long but please read
As some of you may remember I have posted in the past that not only I have kidney failure for the last six years requiring Dialysis but for the last 3 years I have had prostate cancer which has spread to my bones. Fortunately neither condition has been very symptomatic (until Recently) 14.5 haemoglobin and full urine output so no need to take off UF.
Also the bone cancer had not got too much of a hold so no pain. When my PSA started doing big jumps in level about a year ago the oncologist put me on a very strong hormone drug intended to stifle the cancer growths plus prednisolone to counteract the worse side affects of the drug. It has had the effect of causing me heart arrhythmia and a fast heartbeat plus thumping palpitations in my chest during the last hour of my dialysis. After about ten minutes stopping of dialysis heart is back in rhythm.
The only way to stop it was to knock an hour off my dialysis time and do a ridiculously low pump speed. Also since I started the new cancer hormone my HB is slowly dropping so that now I am borderline anemic. I have had two 500ml units of blood on the last three weeks which improved things but I am back down to 9.3. The whole shit for me is that neither the Dialysis doctors or the Oncology team have any idea how to deal which the interaction of the two diseases and the effects the medicines for each condition have on each other. For example if the the sudden loss of hb is down to the cancer in the bones then the cancer docs don't know whether Arenesp it will have any benefit in fact they suggest that it could accelerate the cancer but they don't know for sure. If the hB drop is the natural result of kidney failure then Arenesp could be the answer but because there's no overall expertise for how the two coditions interact nothing much is getting done in decision taking.
I have stopped the hormone treatment because it was compromising the quality of my dialysis and now I am back to my normal dialysis with no problems but the point also is that the hormone treatment wasn't working anyway as I believe it was being dialysed out of my system.
I thought that maybe the hormone (which was also bouncing my BP all over the shop) was causing my drop in hb but after coming off the hormone now for over 3 weeks it is still not rising.
I have agonising back and flank pain which is partly controlled by pain killers but it's worst in the soft tissue between my ribs and hips which could be the onset of PKD pain but could be referred pain from the cancer activity in my ribs. Whats more I'm getting the impression off both the renal and oncology side that its all to complicated to assess and an attitude of palliative care is creeping in. I have never felt so ill in all my life. All I want to do is sleep most of the time. I have no energy or interest in anything very much. I feel that by better expert knowledge the time I have left could perhaps be of better quality than it is now. I am totally losing hope and I am at my wits end. I don't know how many more posts Ill be sending in the future but if and when the inevitable happens my wife Rita will let IHD Know.
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Ken
I'm sorry to hear about your problems. It never rains but it pours, and it sounds as though it's bucketing down for you at the moment.
When I had lymphoma, one of the abstracts about Aranesp which I found did suggest that it raised problems in the area of cancer. I printed it out for my nephrologists at the time and they were quite surprised. I have never seen it mentioned here, though.
I do hope that you can cut the 'going downhill fast' scenario. Thinking of you and wishing you calmness and peace.
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It upsets me to think of you in pain. I do not have any answers but will search and see if I can find anything.
Lots of love and best wishes to you and Rita. :cuddle; :cuddle; :cuddle;
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Ken
Rotten news, mate. I won't inflict any pious platitudes on you. I just wish you peace..
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This just plain sucks, Ken! I am grieved to hear this. :embarassed:
I, too, offer no platitudes, but send kind wishes for your pain to ease and some positive change in your treatment. :cuddle;
Aleta
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Ken, I am new to IHD so you really don't know me but I wish you relief and will be praying for you and your family.
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^
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I'm so sorry you are suffering so much. I hope that at the very least, your pain can be controlled.
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Ah Ken....I hate to hear you are having such problems. I'm sending good thoughts and prayers your way.
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This is so hard to read.. :cuddle; I wish/pray for those doctors to be enlightened and figure how to control your pain in a safe way. This is just so heartbreaking and i wish you so much better. Im so sorry :( I hope you can gain your health and come back to share more of your life with us. Bless ya Ken, and thank you for sharing with us. :grouphug;
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Hi Ken, I'm sorry to hear you are feeling hopeless. I've been there. Get right with God (maybe you already are) and a peace will surround you. The otherside has to be better than this. Right? But, aside from that I'm on a pill for my crazy thumping of the heart (premature heartbeats) and it works. Ask about Metoprolol. We are on pills anyway so what is one more....
Ken, rest and sleep and try the Epo or Aranesp. Or just blood transfusions. 9 is low.
:cuddle;
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Thank you all for the concern and care you have shown in your posts.it really is appreciated. At D yesterday i had a unit of blood (250mls). and a little fluid taken off (for the first time) I got a decent night's sleep without too much pain. I haven't tried a walk round the block yet but I seem to be getting round the house and up and down stairs without getting as out of breath and the strentgh in my legs is better.
Thanks for the information about the medication Rerun. I''l see if it's available on the NHS.
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I'm glad you have gotten a bit of relief, Ken. I hope it continues and you can get the treatments sorted out to your advantage. :thumbup;
Still thinking of you.
Aleta
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This was nice to wake up to. Lets keep up our best wishes and thoughts and prayers and get you to having this a regular thing........... and better! Sending my prayers Ken, Im so glad for even this :) :cuddle;
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Sorry for all your problems Ken. Hope you do some rapid improving. You are much too valuable for us to lose you.
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:waving; Good to hear you had a better day. Love ya! :cuddle;
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Sending you oodles of *huggles* Ken. Hope the relief continues.
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Glad you're feeling better now, Ken.
:cuddle;
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:grouphug; Hope they can find something to help soon, and that those decent nights of sleep keep coming.
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I hope your days are better.
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Love, light and prayers are being sent your way for better days ahead and to cut that pain out of your life.
I just had my thyroid removed last Tuesday and was shocked that the nurses, all nurses didn't know when to give me the Renvela nor did they know how to pronounce it! Unbelievable... I'm sure you know the saying.... that's why they are Practitioners, because they are practicing medicine.
Feel better real soon, do not give up, try other doctors until you find one to help!
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I have no advice but I do wish for you to get ease from you pain and peace of mind. Hugs and prayers, Leanne
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Hang in there bro.