Hi Update from jbell

[lizbee]

Morning Jan, well the big day has finally arrived for you, so I am sending you lots of goodwill vibes for your meeting with the tx co-ordinator. I am a little better now, on Thursday I went to the day surgery at my clinic and had my stent changed by local anthestic which took all in 3 hours compared to the 3 days in hospital that I usually have to endure. I still have.nt heard from my urologist, this stent change was arranged by my renal consultant and they are of the opinion that changing it will make me feel much better and there will be no more blood in my urinel I was so pleased it was done this way as I so hate going into theatre for a procedure to be done. Yesterday I had the 6 week follow up appointment for my fistula and it is working well and getting stronger so that's going in the right direction for dialysis. Take care Jan will be thinking of you and I am sure you will let us all know how it all went for you........

Liz

[Tibbs]

Good luck jbell, keep us updated with how you get on.

[jbell]

Hi thats me back after what feels like a gruelling 3 hours ! No it went well, had a gallon of blood taken off me. Also have a list as long as your arm off tests to be done to make sure I am fit for surgery. I was slightly reassured by all of the tests when she said "they wouldnt do such a massive operation if they didnt think you were going to live for the next 5 years as that would be a waste of a kidney and a pancreas !". So if they do accept me at least theres a fair chance I will survive for awhile at least. It feels quite harsh talking about other people dyeing and indeed the risk that you might as well. But I do feel a bit better and at least it feels like the ball is rolling now. Thank you Tibbs and others for your support its good to talk about whats happening.

Lizbee am glad everything went well at hospital and that fistula is getting better. How are you feeling ?

[lizbee]

Hi Jan I am so glad that the meeting went so well for you, you now know and are in a better position to make all the right choices now.....it is sad that in order for you to get what you need someone will die, but you can.t dwell on that, just get prepared for all those tests.

I am not great at the moment, so very tired all the time now, falling asleep nearly every couple of hours and sleeping at night too.....I also feel quite "sickly" was better at the beginning of the week but its just got worse every day. I wish they would hurry up with dialysis, funny now that my mind is made up I just want to get on with it.

Take care Jan, keep me posted about the tests.........................


Liz

[amanda in CA]

Lizbee, if your kidney function is so dire, why are they not dialyzing you through a catheter if your fistula is not ready? How do they know that it will be mature in three months, which is a moot point as it sounds as if you need dialysis now. How are your other labs, particularly potassium?

[jbell]

Hi Lizbee thank you for your kind and encouraging post. How are things progressing with you ? AAmandaclare is so right why are they waiting to sort this out ? I hope you get on dialysis and feel better soon janbell

[wagolynn]

Lizbee, if your kidney function is so dire, why are they not dialyzing you through a catheter if your fistula is not ready? How do they know that it will be mature in three months, which is a moot point as it sounds as if you need dialysis now. How are your other labs, particularly potassium?

A neck line is the usual way if the fistula is not ready. Usual installed under a local anaesthetic.

[amanda in CA]

Wagolynn, exactly. Can't see why they are hanging on.

[wagolynn]

There are reasons why it may not be appropriate. My intention was to clarify what was meant by 'catheter', in the previous post.
Have you asked, why not a neckline?

[lizbee]

Hi Amanda, I was at the clinic on Monday did ask about dialysis but still not quite there appartently, so they upped some of the medication I am taking to see if that makes an improvement to my quality of life, also gave me frusimide to take as they seem to think I am carrying extra fluid, so limit my intake as well. They would use a neckline if they thought I needed dialysis before the fistula is three months old, it seems that the longer they leave it the better it will mature. I am not any better today after upping the medication, this morning I took 17 tablets, and have more to take tonight. My potassium is within the normal range if that means anything to you. I am so tired now I don.t have the energy to even fight my case anymore with them. Go back next Monday so will see what happens then.

Hi Jan you will have read the above so that will give you a good idea of how I am. I do hope all is well with you and that you are as good as you can be right now.........

Thank you Wagolyn for clarifying the neckline for me but I did already know that .....take care......


Liz

[wagolynn]

Hi lizbee,
Again, at the risk of teaching my granny to suck eggs.
You did not mention phosphate level, too high or too low, will tend to make your muscle's feel permanently tired. Excess water tends to have a similar effect. The furosemide will take a day or two to have its full effect and the dose may need adjusting. Do you know how to check for too much water or dehydration?

I had about two years being on the edge of dialysis, the consultant explained that I would be better off using medication, and adjusting food intake, to delay starting dialysis.
I am dialysing now, (2yrs +) but I still do not need any water taking off. The renal nurses are always wanting to take water off but I tell them, "not until the consultant says so thank you".

Reading between the lines, always dangerous, it appears your consultant has not explained what his/her strategy is, if this is true, you need to ask. I find the approach, "what are we going to do about this problem", works quite well. As mentioned by others in posts on this forum, working out what you want the answers to and writing the questions down, is an effective way of staying involved in your treatment. I also find that most consultants are pleased to have an involved patient rather than a passive one. Just try to avoid questioning the consultants competence.

[jbell]

Hi lizbee sorry you are feeling so rough. Wagonlynn is it usual to feel better once you start dialysis ?, just hoping things improve for you lizbee once you do start. I was very swollen at one time and I fell asleep constantly, I have been on Bumetanide (water tab) for four years now and the dose steadily increases. Dont worry lizbee I take a sum total of 27 tablets a day, I think thats not unusual, or is it Wagonlynn ?. To answer your question Liz I am feeling a bit strange. I cannot sleep (at all). I was staying up for 24 hours and no tiredness in day at all, I feel like I have far too much adrenalin or something all of the time. My GP gave me 10 days of sleeping tablets which I finish tomight. They sort of make me sleep for a few hours then I wake up constantly. Its awful and I honestly dont think I will sleep after tonight as I still feel the same. I was staying up for 4 days and then sleeping one night, but I didnt feel tired just ill. Is this normal with kidney failure ? I also have the worst taste in my mouth and its overriding the taste of my food, again is this renal ? I have had bloods taken for renal apt on Monday and I will be glad to get there. Anybody any clues whats going on with me ? Keep in touch Liz everyone take care jan

[lizbee]

Hi Jan, you poor thing not being able to sleep is as bad as sleeping all the time, I would get more sleeping tablets if I were you at least you would be getting the few hours that they bring. As for the taste in your mouth I have had tastes in the back of my mouth off and on during my time with kidney problems, sometimes its like salty and others just disgusting don.t know what causes it though but think that kidney failure might just do that. I am told that being on dialysis does help t make you feel better, but wagolynn would be more able to comment on that than me. I keep you in my thoughts Jan and my prayers, hope you get some answers when you see the renal people..........

Wagolynn, it is true that my phosphate levels are a bit high and I take the phosphate binders religiously now with any food I eat so hopefully it will come down. You see I don.t want to be on the edge of dialysis for 2 years like you say happened to you, its been a year since it was first mentioned to me and I was started on the preparation for dialysis and I feel that its gone on long enough but they seem to think I could hold out a bit longer. Its an awful thing to say but everytime they take blood I am hoping that the kidney function has gone down a lot so they will begin dialysis, I should be grateful it is hovering around the 7 to 10 mark but I am not ...............

Liz

[Dixie1]

Hi jbell and lizbee

Sorry to hear you are both having a rough time. Good luck on Monday jbell. Hopefully you may be able to get some advice on the sleep problem at your appointment?

Lizbee - I can imagine why you feel the way you do about your kidney function and almost wanting it to fall. At the moment you are feeling rubbish and so that and the forthcoming dialysis is probably completely consuming your thoughts. Whereas I guess if you got going on dialysis you at least then could try and settle into a routine and get on with life. I guess they must have good reasons for stalling though. Stay strong!

[wagolynn]

Hi lizbe,

the taste in the mouth thing, in my experience it comes and goes. I have tried allsorts of different things to remove it or mask it. The fact that different things work for a while and then lose their effectiveness suggests that the cause is different. My own theory is different concentrations of toxins in combination are producing different tastes or manipulating the taste buds and sense of smell. I have found Lime Cordial very effective. It is quite apparent that my ability to taste has changed, my long suffering wife has put up with experimentation with spices and herbs to find new tastes.

My consultants view was, dialysis involves big changes in a patients life therefore the longer it was staved off the better. I knew that I was not suitable for PD, and I looked at haemodialysis, spoke with some patients and decided the consultant was right. Also, being on dialysis is a big psychological change, I could no longer kid myself I was OK and I knew enough to know when that point is reached there is no turning back. The reason for (the consultant) delaying having water taken off, by driving my kidneys with water pills, is any kidney function is better than dialysis alone.

Binders alone will not do the trick, you will have to make some adjustments to your diet (I hate that word, diet, it carries all the wrong connotations) to reduce phosphate intake. I find the best way to use the dietician has been to do my own research into different foods/recipes that I think I will eat, (I am a very conservative eater) then ask the dietician what she thinks.

Best wishes.