Breathlessness.

[elithomson]

My hemoglobin is 11.9 and was told I am not needing EPO injections. The breathlessness has got worse over the past 6 weeks. I had a fistula done 12 weeks ago and wondered if it is the cause.

[googie]

Heya, obviously I am no expert, but I really don't think that your breathlessness has got anything to do with having the fistula done. I would go to the docs or ring the renal unit and talk to one of the nurses or doctors xx

[Hardworkthisbeingpoorly]

I'm on PD and know that when I get breathless my fluid intake is too high , sometimes the fluid sits in the bottom of my lungs hence reducing the air capacity of the lungs making me breathless , it has only happened a few times as I try to stick to my daily fluid intake , if I don't my weight goes up and that also contributes to breathlessness and rise in blood pressure too . If you are worried contact your renal team as one person differs from the next . Reduce your daily fluid intake about 200 mls that might help , do you pass much urine ? If not that's a key indicator on how much fluid you should drink . Hope you feel better soon

[elithomson]

Thank you for your helpful reply. I have been to the renal unit and spoke to my doctor. He has found a heart murmur and I now await a scan, he thinks I could have a leaky valve. Sounds like an old banged up car! But in the meantime I'll heed your advice and limit my fluid intake too. I drink way far too much! (tea).

[Hardworkthisbeingpoorly in reply to elithomson]

Oh I'm glad you have got answers ! It makes you feel at ease when you get a result from a professional I had this problem on Monday I thought my dialysis results were getting worse so I popped thru to the renal team I had my bloods done and saw the dietitian I was reassured my results are still very good and I had to stop worrying . I usually get a weekly visit from my renal nurse but at the moment she is very poorly . But I'm back positive again after the reassurance from the team. Fluid restrictions are so hard to keep to compared with how much I used to drink I love my tea and used to drink 3/4 of a pint at breakfast and several cups thru the day . I'm now reduced to 200ml at breakfast and that's it . I can no longer drink diet coke because it has a lot of phosphate content. I now just drink water . (It's is really hard) anyway we are not alone on this and some are restricted to less than 1 litre a day so stick to it and keep in touch if you have any worries or even just feel alone .

Stuart

[elithomson in reply to Hardworkthisbeingpoorly]

Thank you for your support. I dont have any contact with a renal team. Just see a different doctor on my monthly visit to the low clearance clinic.The only info I get is online and no one has told me to cut down my fluids at all. I feel I've been handed a DIY kit and no one seems to offer any support or guidance. The Fistula is an episode all on its own too! Its good to know I can have a good 'ol moan and someone cares enough to listen. Thank you.

[Hardworkthisbeingpoorly]

No worries at all . A lot of the time they don't tell you stuff until you've actually got it . This thing about fluid is my personal thought , if the kidneys aren't working properly as they should and the more you drink how is it going to exit your body ? So if you don't put as much in then less will hang around your body as it does in your legs ect. I know I shouldn't but one day I drank 2litres my diabetes blood sugar levels was high all day and this made me thirsty , it took nearly 7 days to get rid of the excess weight I gained by drinking the water and caused me to be breathless my breathing was ruttled it wasn't nice. Normal kidneys filter 200 litres a day of blood so therefore a kidney with 50% function 100 litres and 25% 50 litres and so on . I think mine are around 8% functioning so obviously I have to drink less. But my PD machine takes away about 500ml to 900ml every night and I still pass water a little bit . I also get a lot of my info From the Internet but I do have a very supportive renal team. Anyway if there's anything again you want to chat about just private message me I'm on here most days anyway . Take care and keep smiling

[googie]

My kidneys are working at around 17-21% but I still have to/should drink around 2 litres of water a day to keep them in good working order and clear them out. Would ask about your fluid intake and whether you should be reducing it yet. I thought it was only reduced when you were on dialysis. x