Hi Update from jbell

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wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
I am pleased to see you back on the forum with or without teeth. :? Are the teeth being removed by a dentist or the hospital dentist? The kidney problems, unfortunately, make us prone to infection. Trying to look on the bright side, :? once it is all over things should get better, and you should be back on the list. :wink:

Audiology are looking at some new hearing aids that have just come out to see if they have more power than my present ones. I am up at the maximum for the current ones. I now can hear men making noises but unless I can lip-read I am lost, ladies are a little better but again it's mostly lip-reading. I haven't had a decent argument with Mrs Wagolynn since I don't know when.... :cry:

Water - I am having 1l off only, I am logging my weight twice a day at home. So far it is a gradually going down, it climbs back a bit at the weekend but overall my weight is going down. When it stops falling, I assume that will be my dry weight. The nursing staff are upset because I am not letting them change anything. The consultant said 1l and I am making sure it stays that way until I reach the weight the electronic gadget was suggesting I should be or until I start getting dehydrated.

We have been having very hot days, which I don't like, :oops: the last couple of days have been much cooler though. Then it's back to hot again. :|

Button Hole - this link will down load a training document written by a well known vascular nurse (American), he lectures around the world, Page 6 is probably the best bit. http://homedialysis.org/documents/pros/ ... lation.pdf I hope you can manage to read it. Two of the nurses at my unit use this technique and its heaven, the rest hold the wings and force it in.

Keep smiling, even it hurts to do so.... :D
cph1234
Posts: 33
Joined: Tue Nov 27, 2012 2:10 pm

Re: Hi Update from jbell

Post by cph1234 »

Hi Wagolynn,

i thought you did PD, not HD, or do you have fluid taken off with PD too?

Regards,
cph
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi cph1234,
Sorry to have confused you. My youngest daughter was on PD then APD for a while she is now on HD.

I am on UHD (ultrafiltration haemodialysis). PD or APD (peritoneal dialysis. APD is PD with a machine) does take water off, this is controlled mainly by the type of solution used, dwell time and frequency have an effect as well.
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Hi Update from jbell

Post by jbell »

Hi Wagolyn

how are you and your ears doing ?

I have not been on for ages as firstly I am still suffering with my teeth problem, but I only have to have one more tooth out YEAH :!: I also have been in Ninewells for awhile. I am having terrible headaches and high bp, and to confuse matters low bp as well. I have had a brainscan and yes I do have a brain and it is ok . The headaches are better with the help of painkillers. I have been let home for today but have to go back in tom to start a new bp medication. I have severe postural hypertension. Today going from sitting to standing it was going down by 70 :shock: . Which isnt that bad as it was over 200 when sitting, unfortunately sometimes it doesn't drop and it stays above 200, I am not actually sure if it can be sorted out as I never know from day to day what it is going to do and it can alter every 15 minutes if it feels like it. Notice my bp has a personality all of its own as it is ruling me at the minute.

I was supposed to go to hairdressers on fri but cld'nt as still in hospital. So I rushed in today and put a DIY colour on and now I have bits of orange in my hair, nae teeth (well not many) and slightly orange hair, lovely :mrgreen: Well that is me for now, I will return when they free me from Ninewells again. Three of my pals from my dialysis unit are there as well, it's like a convention ! bye jbell

p.s how are they and you getting on with your dry weight ? Mine is all to pot due to a small weight loss because of sore mouth.
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
Sorry to read about your BP problems, lets hope they can get you sorted out soon. It is nice to hear from you, I have been wondering how you were getting on.

Orange hair, wow.... :D

So far, I am controlling how much is taken off so dry weight does not come into it. I am recording my weight when I get up in the morning and as I go to bed, it was slowly falling but now it is keeping steady. I can just produce a trace of a dimple on my shin at about mid day so I must be near the limit. I have lost about 2kg since I started having a litre off. If the electronic gismo was correct, I am still carrying about 2kg water, if I am it does not show. I am waiting to see the consultant to see if I should try and get my weight down more yet.

Hearing - they are waiting for information from a manufacturer of hearing aids to see if their most powerful one will help me.

Keep smiling, if you have enough teeth left. :?
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
How are you now or have I missed your posts?

I am at last being referred to Addenbrook's in Cambridge for an investigation into my hearing, and to see if anything else can be done to improve it. The local hospital say they have done all they can. :?

I am having water taken off on a regular basis now, not a lot(1 to 1.8L), they have taken my dry weight as 84.5Kg. The silly thing is, this came about by accident. :shock:

My Kt/v number dropped when I started to have water off, I eventually worked out :idea: that the machine could be using the wrong figure for my weight (the v in Kt/v is estimated volume of fluid, which the machine takes as 60% of body weight {for males}).

I asked the charge nurse to try my actual (incoming) weight to see if that made a difference, he stuck into my prescription (on the hospital computer), so now it is my dry weight. :roll:

It did make the difference, Kt/v is now back in the normal range (for me). :D

Best wishes.
chrisb
Posts: 275
Joined: Thu Jul 19, 2012 4:57 pm
Location: gloucestershire

Re: Hi Update from jbell

Post by chrisb »

Hi Jan

I am getting rather concerned about the silence coming from you. I know I do not communicate direct with you nowadays but I still keep an eye on your progress

I hope everything is OK and you are not posting because you are too busy having fun :D .

Chrisb
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