Search found 1492 matches

by MandyV
Mon Dec 19, 2016 8:48 am
Forum: The KPG Forum
Topic: How close is the end?
Replies: 13
Views: 35016

Re: How close is the end?

Hi Vivib

Sorry you have not had a response, probably because adding to another thread means people miss a question. I rather suspect that things have moved on a good deal - I can start a new thread with your question if you like.
BW Mandy
by MandyV
Fri Jul 01, 2016 12:15 pm
Forum: The KPG Forum
Topic: Restless legs
Replies: 7
Views: 14200

Re: Restless legs

Hi - there are a number of discussions on the board about this topic as it is both rather nasty and more common than you might think. I found that a Parkinsons drug (pramexepole) helped me and I have had virtually no issues post transplant. Pre the medication I used to lie in bed with my legs up aga...
by MandyV
Fri Jul 01, 2016 12:12 pm
Forum: The KPG Forum
Topic: Donor not a tissue match
Replies: 1
Views: 4241

Re: Donor not a tissue match

Hi - it used to be that the lower the tissue match the more concerned they were because of the rejection risk - these days they are far more relaxed with the new generations of drugs. However having a 0/6 match does mean that you could be setting up antibodies for any future transplant and they don'...
by MandyV
Fri Jul 01, 2016 12:09 pm
Forum: The KPG Forum
Topic: CAPD Bag Heaters
Replies: 8
Views: 16560

Re: CAPD Bag Heaters

Lol Rik - that looks quite brilliant. I have to say I never bothered with a bag heater when in transit - I just used hot water bottles, wrapped in a towel and then sometimes in a cooler bag to keep the heat in ... I did learn to do it myself as once my father very kindly warmed one up with two hot w...
by MandyV
Fri Jul 01, 2016 12:07 pm
Forum: The KPG Forum
Topic: Medical care after kidney transplant in UK
Replies: 3
Views: 7023

Re: Medical care after kidney transplant in UK

Hi Karolina Welcome to the board - I am sorry that I don't know much about that area but in the UK there are a limited number of transplant centres and so you may have to travel some distance to go to clinic where they can prescribe your medications. When you come across I suggest that you bring as ...
by MandyV
Tue Apr 26, 2016 7:40 pm
Forum: The KPG Forum
Topic: APD and travel
Replies: 2
Views: 5966

Re: APD and travel

Hi - if you get the hard case for the machine and it is labelled fragile you can put it in the hold. You will also need the power converter / surge protector and baxters or whoever will deliver fluids abroad. You could choose to go on to CAPD if that suits. Flexibility to travel is one of the (many)...
by MandyV
Mon Jan 18, 2016 9:25 am
Forum: The KPG Forum
Topic: 8 months post transplant hair badly thinning
Replies: 7
Views: 15534

Re: 8 months post transplant hair badly thinning

Sorry , meant to come back on and say I am only on Prograf but my hair is completely back to normal - my hair is quite fine but I have lots of it so was very self conscious when it thinned so much, but hopefully you will find the same. I didn't do/take anything to help this.
by MandyV
Wed Jan 06, 2016 8:59 pm
Forum: The KPG Forum
Topic: 8 months post transplant hair badly thinning
Replies: 7
Views: 15534

Re: 8 months post transplant hair badly thinning

Which ones are you on? If you do a search of previous posts almost everyone notices it but my neph told me it was also a reaction to the trauma of the surgery etc and I seem to remember it resolved itself by the one year mark ... Doesn't mean it wasn't upsetting at the time though :(
by MandyV
Thu Dec 17, 2015 3:16 pm
Forum: The KPG Forum
Topic: Stent Removal: different experiences
Replies: 29
Views: 67776

Re: Stent Removal: different experiences

Solo - please do not refuse a stent because of this post - your transplant is far more important than listening to what was an undoubtedly horrific experience which clearly should never have happened. As a girl I can say that it was about the same as having a Pap smear, took as long and as uncomfort...
by MandyV
Sat Aug 29, 2015 6:59 pm
Forum: The KPG Forum
Topic: Frequency and duration of Dialysis
Replies: 17
Views: 43725

Re: Frequency and duration of Dialysis

Hi - I did both CAPD and Apd for a total of nearly 6 years and did not get a single infection either of the exit site or peritonitis - I found it worked well for me because I like being autonomous and also travelling. I also have clotting issues which complicates HD. There are also other benefits li...
by MandyV
Mon Jul 20, 2015 10:07 pm
Forum: The KPG Forum
Topic: Numbers of organ donors dropping.....
Replies: 9
Views: 17727

Re: Numbers of organ donors dropping.....

There are many reasons for the drop in numbers but clearly the more people who discuss their wishes the better! The article is badly written because it is not 42% of people who have signed up where relatives over rode their wishes but 42% refusal including 120 cases of family override. Only c30% of ...
by MandyV
Sun Jun 28, 2015 4:27 pm
Forum: The KPG Forum
Topic: Prograf Tacrolimus
Replies: 36
Views: 82054

Re: Prograf Tacrolimus

I am only on Prograf but the pack says (and the hospital told us)that you should take on an empty stomach (2 hours after food or an hour before). The thing is as long as you always do the same thing when they measure the levels in your blood it should be reasonably accurate though I stick to the pac...
by MandyV
Mon Jun 22, 2015 9:51 am
Forum: The KPG Forum
Topic: New to CAPD
Replies: 14
Views: 34127

Re: New to CAPD

Hi Birdman - lots of questions which is great! Here are my comments : 1. Not ideal to get negative UF (less fluid out than in) but there can be many reasons including it being hot and you sweating - one day is not critical but call your nurse - I found my nurses fantastic and there is no such thing ...
by MandyV
Fri Jun 19, 2015 10:18 pm
Forum: The KPG Forum
Topic: Lyme disease
Replies: 6
Views: 15799

Re: Lyme disease

Years ago I got African Tick bite fever and a useful tip I was given to get rid of ticks quickly and entirely was to smother them with Vaseline - it asphyxiates them and then they either fall off or can be removed easily. Don't recall trying that but if you don't have a special remover then worth a ...
by MandyV
Tue Jun 16, 2015 4:28 pm
Forum: The KPG Forum
Topic: New to CAPD
Replies: 14
Views: 34127

Re: New to CAPD

Welcome and I am sure that you will find it really takes less time than you imagine to feel comfortable with doing CAPD. I did it for nearly 3 years before I changed to APD which I did for roughly the same time. I am a little surprised that the nurse is suggesting such a messy and tricky way of meas...