Ms Carole meade

[cazzyme]

Hi all I joined the site in 2013 and have been reading posts avidly, but this is my 1st post.  My health has been deteriorating with my diabetes as my kidneys are very bad and I have been told I will soon have to have dialysis. I have RA and am only taking steroids as I stopped all other medication re RA as my immune system is already compromised with my diabetes and taking the RA meds made it even worse and I ended up with a serious chest infection which I wasn't aware of until my friend came over to see me at 2pm and I was out of it so she had to call paramedics and off to hospital I went.  On top of all this I broke my ankle in 2 places in November and have only just come out of the air boot. The daft thing is with all my problems and having my left leg amputation 4 years ago,

the thought of having the shunt inserted in my arm is freaking me out.  Oh well onward and upward

[Witness1]

You are one brave lady Carole. I think next time I feel sorry for myself I shall think of all you have had to put up with and count myself lucky. What keeps you going? You must be mega resilient! 

[Crusee]

Jeepers Carole what you must have gone thru.I feel a real fraud now feeling sorry for myself.You must be a real trooper and I hold my hat up to you.!!

Before xmas I had two episodes of acute kidney failure when my kidney function reduced to 14%.IDialysis or kidney transplant was discussed and unless my kidneys made some sort of immediate dramatic recovery this was the next step for me.I too am diabetic have RA and chronic kidney disease stage 3/4.

In the next couple of weeks after leaving hospital two renal nurses visited me at home on two occasions and ran thru the whole process with my husband and I in the form  of a slide show and booklets explaining the process,the options available to me and what would be involved.At first it scared me to death as up until this point I had absolutely no idea of what was involved with dialysis.The next couple of weeks I was invited to hospital to some group sessions where we met people who were undergoing dialysis and saw the equipment and how it was used.I found this to be very helpful.The not knowing was the worst part and this helped to put my mind at ease regarding what was forthcoming.It was still a scary prospect but it answered a lot of questions for me.I was also invited to the dialysis unit and meet the renal nurses so that when the time came I knew them as friends rather than a medical team,again it didn't get that far and  I only met them on the group sessions as the immediate dialysis treatment wasn't needed.

If you are at the stage that you have been told you need dialysis it is likely that you may have gone thru all this already so apologies if you have already done so and know about this already.

If you haven't done this  it may be worth asking the renal team if this is available to you.I found it certainly helped me and took a lot of the fear away.As it was my kidneys have made a slow improvement so dialysis for me is not now an immediate threat but will be if it happens again so I am well aware of what the future may hold.

I know exactly how freaked out you must be feeling as it was the same for me and also all the other upheaval it brings with it having to get to the hospital for the treatment.My option is either 40 miles or 54 miles one way and if they are full we are looking at a 60 mile one way journey to another hospital in the trust for a session lasting 3-4 hours and up to 3 times per week.This will be the worst part for me,and will take up the whole day not just for me but also for my husband as he will have to drive me.

The renal nurses who attended me were second to none and they helped me a lot.I hope there is someone at your hospital who can give you the support you need to get you through this.I still don't relish the thought of it but I also would not want to go down the route of the other option so I am placing all my faith in them when the time comes.

Take care and I am thinking of you.

Crusee

[nomoreheels]

Hiya Carole. I'm pleased now you've written your first post we're able to welcome you & I hope we'll see more of you you now. It does seem a little discussed fact that those with prediagnosed diabetes are often at some time also diagnosed with another autoimmune disease (& vice versa) & wonder if it's ever taken into account or even recognised when we first present at our GP with suspected RD. I've also wondered before if messing with my hormones in my 30's resulted in my RD diagnosis, though I've been fortunate in not being diagnosed with diabetes though I do understand the ups & downs of living with a diabetic, my h had it as did his aunt who needed multiple ops on her feet.

I'm sure having gone through what you have already you'll cope with this next stage in your treatment, often the thought of something is worse than the actual thing. Your last line, onward & upward, tells me you'll get through it, you've got through other testing things many would reel from but it's perfectly natural. 

Keep posting & we'll be supportive, I'm sure you've a wealth of information to share too. Take care. x

[cazzyme]

Thank you all for your replies Crusee I am due to see the renal nurse at my next kidney appointment to discuss dialysis options so will let you know how it goes. Cazzyme

[wishbone]

Crikey Carole, and I thought I was having a rough time of it. I admire your fortitude and hope I can be a bit more resilient after reading your post instead of feeling sorry for myself much of the time. RA is bad enough on its own, but having other chronic health conditions on top of it can cause all sorts of complications, as we and other unfortunate folk know only too well.

Take care and hope the dialysis appointment goes ok.

[Hidden]

Hi Carole,

so glad you have decided to post here and welcome to the site. Sorry you have been through so much. You will find a lot of support on this site from the members and there is also a lot of experience with conditions other than RA. Hope everything goes well for you.

best wishes

Beverley (NRAS Helpline)

[cazzyme]

Hi all I haven't been in contact for a while as I ended up getting an infection in the bone of my right leg and ended up in icu twice and was told by the consultant that the infection in the bone was not responding to the antibiotics and my next trip to icu would probably be my last. The decision was amputate my lower right leg and get rid of the infection. That was in September last year and after intensive physio I am pleased to say I am now walking on 2 prosthetic legs. Tomorrow I have an appointment with the kidney specialist so the question of dialysis could be rearing its head again fingers crossed for that one .Hello Crusee, NomoreheelS and Wishbone. hope you are all ok.

[nomoreheels in reply to cazzyme]

Oh my word what a frightful year you've had but well done, that's a great recovery Carole. Of course I'm so sorry it came to that, diabetes as you know can be the devil but you're showing it who's boss & that's proving your inner strength is winning over it.

I hope tomorrow brings positive news & not what you're fearing. You've done well so far to avoid dialysis but I'm sure you'll do as is needed to make you as well as you possibly can be.

Do let us know how you get on, there are so many of us here now we can lose track so updating us is so helpful. x

[Hidden]

When it rains, it really pours. So sorry you are having a bad spell now. Welcome to the group. I'm sending you a big gentle hug.

[cazzyme in reply to Hidden]

Thanks for the hug. I've been a member since 2013 when I first posted it has been quite a bumpy ride RA diabetes kidney problems anaemia and double amputee but still in there punching.