Hi Update from jbell

[jbell]

Hi Wagolynn, thank you for all of your information, have you swallowed a medical journal ? If you were not a dr/dietician before you retired you could have missed your calling You are being really helpful actually, thanks again. I have trouble keeping my bp down, most days its over 140/90 + and thats with a hefty dose of bp medication. Because of severe autonomic nerve damage due to diabetes my bp is terrible to control, it goes very high at times to very low all in the same day. I do my best and try to eat heart healthy food, my cholesterol is 4.9 but I do take a statin as again the auto nerve damage has caused problems with my liver. Do you believe that taking supplements can help with things ? I am taking Omega 3 and 6 tabs, calcium, vit D and Vit C. I need the calcium and vit D as I have osteo-porosis. (I know my spelling is appalling (I did go to school but it was when you didnt need to spell, just write it how it sounded !) and I do ont have a clue how to use spell check, anyway thats cheating .

I have been to renal clinc and consultant was pleased, everything is stable as it is, so thats good. He sat and went through the letter he has sent to tx team and I was so shocked to see all of my diabetic comlications and health issues aside from kidneys put down on paper. He put up a good argument for me having a tx, but I was decidedly shaken at my apparent lack of life quality at the moment. I feel I should do more, starting with a walk tom, I did quite a lot of walking today and I am so tired now. I was moved by your decision not to go for a tx, but I fully respect and understand your reasons for not doing it. It must be quite good having dialysis in the evening, at least you are free in the day to do something if you wish to and straight home to bed seems a good idea as well. I know what you mean about sleeping tablets, I felt really rubbish after taking them for 10 days. I have now had 3 days without them and woke up an awful lot last night. Renal consultant thinks I stress out too much and thats what the problem on the no sleeping at all at night is. I am not sure how to stop myself from stressing, I am a terrible worrier and always have been, I will fret about my breakfast let alone anything else

I have been out for a very nice lunch after the hospital as a friend took me, then did some food shopping as husband still incapacitated or so he says Anyway thats todays adventures over, back to clinic in 7 weeks. Take care and speak soon Jan

[wagolynn]

Hi jbell,
I was not a doctor, I was in industry, until they thought I was too old, in later years I was inspecting gas and electricity meters, because the meter had not been read for over two years.

Sleeping or not sleeping rather, when I was in industry kept a note pad beside the bed, still do. Before lights out, I would try to make a note of the current problems/worries and any possible solutions to be investigated. If a possible solution came in the night, I would note that and then I could go back to sleep. Based on the idea, sometimes the brain activity keeping me awake was caused by churning over the solution to a problem not wanting to let go for fear of forgetting it. But writing things down, and deciding the answer is in the future, e.g. an appointment with medical team, makes me realise, I do not have crystal ball so I cannot know what the outcome will be. No amount of fretting will change this. It may help you...
Taking excursive or doing little jobs hopefully will make you tired enough to have to sleep, anything were you are learning something may also help with sleep.

Spelling checker, I really do need one, assuming the website behaves the same way on any computer.
Miss-spelt words are underlined in red, with the cursor on the word right click, a menu will appear with spelling suggestion at the top, select the correct spelling and left click, job done.

Sleep well...

[jbell]

Hi Wagolynn good to hear from you. I am not sleeping too bad at moment, I wake up a lot. The nights I dont sleep I usually end up writing lists of things to be done/to ask if its an apt or emailing my daughter long winded middle of the night rubbish. Shes quite fed up of this so I am currently banned from emailing after a certain time of the day !! My other half works away doing nightshift for part of the time, so he is quite happy for me to email at ungodly hours, but hes always so busy he cannot reply, so its no fun having a one sided conversation.

I managed a total of 30 mins walking today, as it was such a lovely day. I shall do the same tom if I feel up to it. I am determined when they cart me off to Edinburgh and sit me on an exercise bike to check my heart and lung function I shall be ready for anything The walking was so hard compared to last summer when I first started walking a lot. It serves me right for stopping all forms of exercise as soon as it rained, plus I guess eGFR is down a fair bit from then.

So you worked in the gas industry, it seems a shame you were considered too old as now they seem to want people to work forever ! I stopped working 23 years ago to stay home and look after my daughter with every intention of returning to work once she went to school. But I am afraid events and ill health took over before I could go back. Well take care, and enjoy the sunshine.

Lizbee havent heard from you for awhile, hope you are doing ok ? jbell

[lizbee]

Hi Jan I am here in the background been reading everything but not saying much as I have nothing to add to what is being said and not a lot to say about me and my declining kidneys they are now down to 8 and I am having a break from the clinic as I found it depressing to go every week and have nothing but bloods done......I can phone if I need to go back sooner we agreed it was ok for me to take a break at this stage. I am glad to hear that you are sleeping a little better now and that you have started getting some exercise. Wagolynn thanks for the spell check tip and it works just like you said it would very handy indeed.........the soup I am having is homemade and I am sure of what goes into it that way.......

Liz

[wagolynn]

Hi lizbee,
Nice to see you are coasting along.

[jbell]

Hi lizbee great to hear from you, hope you feel a bit better away from the clinic for awhile

[lizbee]

Hi lizbee great to hear from you, hope you feel a bit better away from the clinic for awhile

Aww thanks for that Jan, I am just the same but not having to travel in there every week will be good for me, and I can always call them if something should go wrong.

A question for Wagolynn

I put my question here as I know you read everything and will get this. I read your post about being on dialysis and it will be that type I will go for when it finally arrives. What I want to know is do they still measure your kidney function, and if not how would you know if your kidneys stop working altogether as I have been told that can happen. I have been thinking about that for a little while was going to wait for it to start and then ask questions but I thought you might have an answer to this one. thanks

Liz

[amanda in CA]

Lizbee, while you still pee, you have residual renal function. If you have an appreciable urine output, that should be factored into adequacy tests. Doing a drop here and there really doesn't constitute residual renal function; that is where I am. I go a little drop every few days.

[wagolynn]

A question for Wagolynn

I put my question here as I know you read everything and will get this. I read your post about being on dialysis and it will be that type I will go for when it finally arrives. What I want to know is do they still measure your kidney function, and if not how would you know if your kidneys stop working altogether as I have been told that can happen. I have been thinking about that for a little while was going to wait for it to start and then ask questions but I thought you might have an answer to this one. thanks

Liz

Once on dialysis, PD or Hemo, the usual form is to take bloods every month. The consultant and dietician use this data to adjust your treatment and work out how well (glass half full ) your kidneys are working.
Another indicator is how much you are still peeing, the output will decrease with decreasing kidney function, near the end, this becomes unreliable as an indicator because we also lose water by sweating. Many of my fellow patients do not pee at all.
As function decreases, dialysis time, blood flow rate, dialyser (the membrane), dialysate (the liquid on the non blood side of the membrane), and the patients water intake, can all be manipulated to correct the patients fluid balance.
Each patient has an upper limit to how fast water can be removed, hence the need to increase the dialysing time. If this limit is exceeded the patient will have a problem with their heart because there is not enough blood to pump and the blood will get very thick and hard to pump, the patient will feel dizzy or faints. This is caused by lack of blood to the brain. It is usually corrected by laying the patient flat, to get blood to the brain and giving the patient some water to drink and reducing the water removal rate.
It sounds a bit dramatic (it can be life threatening) but the nursing staff are on the lookout for this and know what to do.
Some Hemo dialysing machines can be organised to take blood pressure (BP), and pulse rate, at regular intervals as an early warning (many patients complain about having the BP cuff on continuously).

Sorry it's so long but I have tried to answer the questions the short answer would raise.

[jbell]

Hi Wagolynn, that sounds quite alarming, but as you say nurses should be on top of it. Are you on a very restricted fluid and food diet ? I got a DXA scan results and an x ray result today. I have 2 crumbled vertebrae in my spine, which explains a lot of back pain I have had for awhile. The bone density scan shows I am 1 point off of osteoporosis which is a bit scarey. I started Alfacalcidol for some months now so maybe that will help. jan

[wagolynn]

Hi jbell,

Because I am still I am still urinating, I have gone all posh now , I am encouraged to drink as much as I can.
Food restrictions are on Phosphates and Potassium but not very severe, I am keeping them both within the limits, to be fair I should say we, Mrs wagolynn keeps me under control and she does most of the cooking, while I play with the vacuum cleaner.

I do hope they get your bone thing under control quickly. The pain is getting to me, just thinking about it.
Are they proposing to do anything about the crumpled vertebrae?

I watched a BBC Horizon program (may still be on iplayer) about the placebo effect, in that, there was a section showing a doctor using a cement to glue vertebrae back together, it may be of interest.

[jbell]

Hi Wagolyn, so long as your not to posh to push, the hoover that is Glad Mrs Wagolyn keeps you right. Funny enough Mr Bell being a chef tries to keep me on the straight and narrow. Thank you for the tip on spell check or whatever it is called, it is really useful. Though of course it helps if I look at the screen every now and then. The dr today said that there is nothing they can do with my back as it was obvious from the x ray the damage is old. I fell down the stairs years ago and I am wondering if that was it. The fall the other day did not seem to have caused any further damage . My back has been sore for so long it seems to be part of life now. On the other hand as soon as I have a tx I will have to take something to help my bones, I cannot take it at the moment because of kidneys. Also after tx you have to take steroids forever (I think) but these are very bad for bones as well. I feel there may be trouble ahead but I shall cross that bridge when I get to it. I am thinking about asking to be referred to a pain clinic, maybe that might help. How come you can still , how does a lady put this, yes thats right pee !, go to the top of the class I still pee loads , but I take 4mg of Bumetanide a day, do not know if thats a lot but it certainly does the trick at the moment. Anyway after that highbrow conversation I shall retire, I am still sleeping not too bad, take care Jan

[wagolynn]

Hi jbell,
I have PKD, which is progressive, though most kidney conditions are, I think, but I am taking diuretics (that posh thing again water pills). My consultant intends to keep my kidneys passing water for as long as possible so as the function drops it will be more pills.

I am pleased to see the sleeping was not just a one night stand or should that be lay down.

Ref the Boss (well we males like to think that) - Yes, I often think about people facing any condition on their own.

The doctor I referred to in the program was gluing vertebrae together by injecting the glue not opening the back up, if it is done in the UK, I think he was American.

Transports here , bye.

[jbell]

Hi Wagolyn, I have changed my mind you were not a dr in a past life you were a comedian You will be pleased to hear I am still sleeping, though I will admit last night I did lye awake for a good few hours, so I am a bit tired today.

The more I think of it, the gluing of vertebrae sounds very interesting. I think I will look it up, as they are doing it in USA we could be miles away from using such methods.My Mr Bell is at this moment warming up a microwavable wheat pad for me to sit with resting at the base of my back. Though to be honest most of the pain is coming from when I fell out of bed last week.

I am going to have a couple of quiet days, this infernal tiredness is making me want to just rest and vegetate at moment. What kind of water tablets do you take ? I used to take frusomide but they stopped working and now take bumetanide. I seem to pee fine but I never need to get up at night and always wake up swollen. Is that good or bad, what do you think ? ( have decided you are the expert on this particular topic ) I know you said on another bit of forum you still get eGFR checked every month once on dialysis, but do you still see your neph in a clinic or do you see him/her at dailysis unit whilst dialysing ? Are there many of you on the evening shift at unit ? Must gotheres a coffee and a cake with my name on it nearby, Jan

[lizbee]

Hello everyone hope you are all as well as you can be today. I just wanted to thank Wagolynn for the info about dialysis and the the post art of urinating, I am glad you gave so much information and I am now much more aware of what dialysis is than I was before I read your post. Like Jan I wondered if you still saw your renal consultant like when the once a month bloods are taken or are you now in the hands of the dialysis nurses and doctors at your unit.........


Liz