New Member - New kidney problem

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Westwood
Posts: 4
Joined: Thu Sep 29, 2011 8:13 am

New Member - New kidney problem

Post by Westwood »

Hi All,

My name is Matt. I am a 30 year old from London, England.
My story...
In 2005 I was snowboarding and started peeing blood while away. When I got back I had tests at hospital and it was decided I had IGAn. My kidney function was great at this stage so they just said pop pack each year and get tested as it doesn’t seem to be doing anything. Well in May 2010 I was still fine I had great Kidney function.
Unfortunately, I randomly tested my blood pressure about 2 months ago because my sister had just got a machine due to her pregnancy. My BP was 190/90. I thought it was a miss-test so took a lot more and all were above 180/90. I headed straight to the doctors the next day and in her office it was 204/95! She immediately placed me on ACE Inhibitors (Ramipril) to get it down. I had blood and urine tests and returned a week later to the docs. BP was still high so doubled the dose of Ramipril and said my kidney function had reduced quite a bit so referred me back to the renal specialist at hospital.

Went on Wednesday and seems my GFR has gone from 116 to 43 in a year and a half :( They are arranging a biopsy in the next few months and doubled my Ramipril again as BP still over 140/85. Now take one 2.5mg in the morn and one 2.5mg at night to help make it stable all the time.

Have to say it hit me like a train. Totally threw me. I am usually totally in control. I am the kind of guy that is great at the advice but nothing I said to myself would help. I spent ages looking online for information as you get so little time with the doctors and don’t always ask the right questions. The trouble is when I found things online it usually scared the hell out of me!

That is when I found this forum. Reading about how many people are on here in the same or similar situations, and some for many many years, has helped me realise it isn’t the end of the world. To be able to talk to other people in the same boat will be great. I don’t think people around me really understand what I am going through, and why would they. They all say don’t worry it will be fine etc. Well yes it might, I might be lucky, but it might not, so I would rather know all about what I have got. I know many members here are in stages far beyond mine so I almost feel bad coming on here and complaining of my worries when I have a relatively OK set of Kidneys at the moment but if I am totally honest I pretty scared what the future holds for me.

The docs advised eating less salt, less protein (said 0.75G per KG in weight, which seems a lot to me still?). The one question I asked which surprised me the most and I was hoping others may have opinions on was - I asked if I could still exercise - I like to do short 2/3 mile runs a few times a week to de-stress etc. The Doc said to only do light exercise and anything I do that damages muscles, and rebuilds them, would produce a substance toxic to me kidneys. I said OK so I wont to weights but surely running would be OK and he thought only fast walking or slow jogging was a good idea. Surely I can’t do myself damage running a few miles a week??

Anyway I thought I would join up and hopefully not only get support for myself but help others in the future.

Thanks for reading.

Matt
Thelma
Posts: 446
Joined: Wed Feb 23, 2011 8:51 pm

Re: New Member - New kidney problem

Post by Thelma »

Hi Matt

I'm sorry you're in the kidney boat with the rest of us.

Like many on here, I really relate to what you're saying about it being out of the blue. It is a lot to deal with and process. One of the ways I cope with it is to be as informed as I possibly can about my own condition. My doctors take decisions WITH me, rather than FOR me, which means I get back some sense of control.

If your eGFR is around 40 then you aren't likely to be feeling much in the way of side effects of the disease (I hope!) in which case the best thing you can do is keep on top of the blood pressure (I'm appalled they weren't keeping a closer eye on yours) and stay out of trouble (diet & exercise).

Your biopsy should give a clearer picture of the disease and damage to your kidneys. eGFR is only an estimate and results can vary.

Low salt is definitely right, but there's not a lot of evidence about reducing protein intake being of benefit until much later in CKD, I think. As for exercise... IMO your doctor is being overly cautious. Maybe bodybuilding isn't the way forward, but I'm sure you should be fine with running and so on. Have you been seeing a renal specialist or just a GP? (No disrespect to GPs btw, many are excellent, but most aren't experts in kidney disease.)

Good luck... and I think you should go snowboarding again :D
Transplanted 31st July 2012 - Vasculitis survivor
cazpi
Posts: 427
Joined: Sun Aug 15, 2010 2:05 pm

Re: New Member - New kidney problem

Post by cazpi »

I have IgAN (diagnosed in 2001) my GFR was about 40 at diagnosis and I'm still going strong without dialysis, I've done moderate weights, running swimming and aerobics for the last ten years with no ill effects. I do watch my diet (but not as strictly as I did at first) and eat practically no processed foods. I definitely don't have the energy I used to though, I pace myself now and try not to overdo things, but keeping fit is vital.
I wouldn't do loads and loads of weights body-builder style, but a sensible amount shouldn't hurt imo. Go easy on the aerobic exercises until you're settled on the ACE inhibitors, as you may be prone to dizzness with over exertion.

When I remember I also do tennis-ball squeezing to work on the veins in my forearms in case I need a fistula later - this was advised by the vascular access surgeon.

Another thing I would advise (although this is just coming from me with no medical grounds for it) is to do some stretching exercises, particularly the legs, I had a nasty phase of getting cramp which wouldn't shift and I think that keeping as much flexibility and stretchability in the muscles would have helped. I stretch a lot more now and haven't had so much trouble. I don't think it can do any harm, anyway.

All the best
dirverd
Posts: 212
Joined: Tue Aug 02, 2011 3:42 pm

Re: New Member - New kidney problem

Post by dirverd »

Hi Westwood,

Welcome. I had similar questions when I was diagnosed 12 years ago.

For the last five years I have competed in triathlons and in July of this year I did my first Ironman (swim 2.4mils/ bike 112mile / run a marathon) in a time of 13hrs 26. I was training about 12 hours a week and eGFR was around 25.

My Nephrologist, Dr Abbs, at London Bridge Hospital was aware of my training and said there should be no adverse effects.

Now I'm down to eGFR 10 - and I still cycle over 6 hours per week, go the gym once and run once.

So I think you'll be fine to keep running. For what it's worth I think it's helped me no end. I really believe it's helped me get through this. Psychologically and physically.

There's a guy called Shad Ireland that's on Dialysis - and he still competes in triathlons and he's training to do the New York marathon. Google him - he's been an inspiration to me.

Plus, try and speak to a specialist, my local GP doesn't have a clue.

Good luck fella.

Diccon
Westwood
Posts: 4
Joined: Thu Sep 29, 2011 8:13 am

Re: New Member - New kidney problem

Post by Westwood »

Thanks for the reassuring replies.

Sounds like the doc is being over cautious on the running then. When I say doc it was the renal specialist (consultant) so I would hope he has some idea! I will do a few runs and see how I go. My GP was actually really good with this. She was able to calm me down as I because very anxious and didn’t know what to do. She held her hands up and said I needed to speak to a renal specialist to answer all my questions (of which there were a lot) and got me into the hospital very quick.

I have been reading that your GFR can be reduced by taking ACE Inhibitors. As I was put on the Ramipril before they took bloods to test my kidney function I am hoping that my kidneys might not have dropped to 43 that quick and it’s the Ramipril knocking it down a bit. Anyone have any experience with this? I know it’s a moot point because I will no doubt have to be on Ramipril forever anyway :shock: But always nice to think it might not be as bad as the GFR suggests!

Not heard about the fistula stuff. In fact I had to look up what it was! Might have to start thinking about beefing up those veins then!

Congrats on the Ironman dirverd. My friend did the Louisville one last year. Sounds like an absolute killer! I will stick with my 2/3 mile runs for now I think haha.


Thelma - I am in the process of booking my next snowboarding trip. Money is tight at the moment but I figure I might not be able to do it forever so why not :P

Thanks again all.
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bigbuzzard
Posts: 1481
Joined: Sun Mar 12, 2006 11:21 am
Location: Devon, UK
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Re: New Member - New kidney problem

Post by bigbuzzard »

Hi Matt

Just one quick thing. There are loads of different drugs for high BP - and they mostly seem to be pretty benign. There's the family of ACE Inhibitors like Ramipril, and Beta Blockers like Amplodipine (I think that's right). I think it's common to be on both at the same time - I certainly was for a while.

When I was on Ramipril, it caused me to have a really irritating dry cough - not much good for a singer sitting behind an orchestra in classical concerts or recordings, which I do from time to time. I asked about this, and it was changed to Irbesarten which didn't cause that problem. Since then, my BPs improved so I'm just on the Amplodipine - so I suppose it shows that 'forever' doesn't always mean that.

Basically they should be able to find a BP drug or a combination that works for you.
Thumps
Posts: 1302
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: New Member - New kidney problem

Post by Thumps »

Amlodipine is a calcium channel blocker - gave me terrible oedema, so I switched to valsartan which worked really well for me....

Point being - BB is right, persevere, there will be one which fits you best :)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Fabrette
Posts: 149
Joined: Fri May 28, 2010 9:58 am
Location: East Yorkshire

Re: New Member - New kidney problem

Post by Fabrette »

Hi Matt,

I'm currently taking Ramipril and I don't feel like I'm having any side effcts from it but I've also had many others in the past- like Thumps I got really bad swelling with Amlodipine so I was given Lercanidipine for a while- but the one I would never take again is Doxazosin- it made me so depressed after only a week I sat on the edge of the bed one morning and actually wished I was dead!!! The thing is with meds for blood pressure is that they will keep adjusting it and trying new ones as your body 'gets used' to them and its not uncommon to be on four or five all at once.

Denise xx
My one life added to my cat's nine make a perfect ten.
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

Re: New Member - New kidney problem

Post by amanda in CA »

I am sorry to hear about your news. Hopefully it won't get to dialysis but if it does, then having a fistula is not the onky option as there is Peritoneal dialysis, and even if you do have a fistula there are various options- in-unit, home haemo. Which hopefully includes shoert-daily home haemo. Anyway, good luck.
crowes
Posts: 5
Joined: Wed Dec 28, 2011 6:42 pm

Re: New Member - New kidney problem

Post by crowes »

How is the fistula different from the Peritoneal dialysis? Which one has an easier recovery? I didn't even know there was an option. Did your doctor recommend the one that was covered by short term health insurance?
Last edited by crowes on Thu Jan 26, 2012 8:36 pm, edited 1 time in total.
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: New Member - New kidney problem

Post by rheaybou »

Treatment wise the results are pretty much the same, however the method of treatment differs greatly

If you are independent and wanting to continue a 'normal' lifestyle then PD is the one to go for. As I type I am connected up in bed and no need for any supervision from my sleeping partner. HD and home HD require a larger part of your life devoted to treatment and also a slot time.suitable for you available.

Which way you choose can always be changed if you feel you have made the wrong choice - that's what I am always told by the real team at Sheffield.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
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