Rubbish Kidneys Support Thread

[SandysMam]

Inspired by chatting to a couple of other posters on different threads, I thought I would start a group for anyone struggling with kidney failure, dialysis or after a transplant.

Kidney Disease is a massive problem in the U.K, but in my experience, when you say you have it, people don’t really understand what it means.

Personally, I have kidney failure, an eGFR around 20, and am expected to need dialysis or a transplant anytime from now really, although hoping I can hang on a bit longer.
Excuse me if I am a bit vague about some of the details as some are quite identifying.

Physically, I often feel absolutely fine, but on bad days am exhausted, dizzy, and my brain feels foggy. I bruise like a peach and my eye bags are horrendous, but I generally look ok which is why it is so hard for people to understand the illness. I work, exercise, act (mostly ) normal!

The mental side is worse though. Waiting for the thing to happen that I feel means the end of the world but might not be. Fearing every blood test being worse than before, dreading the day I have to have dialysis. Dreading what that might mean for me and my family.
I don’t have anyone suitable, or offering to give me a kidney, and I feel so deeply uncomfortable about friends thinking I might be after theirs when I mention my illness.
I also feel so sad that my only hope is someone else’s tragedy (from a desceased donor) and this pains me mentally and makes me feel like a terrible person. I also know a transplant isn’t a cure all and comes with it’s own issues.
I just wish my kidneys worked!!
I wake up in the morning and forget for a second, before remembering and my heart sinks.

BUT!!!
Kidney failure has made me appreciate life in a way I never would before. I do not sweat the small stuff which is a lovely release.
Knowing about it has allowed us to plan, so financially we should be just about ok, and it won’t come as a huge shock when it all kicks off.

I would love to hear from anyone going through this, or anyone who has and can speak from experience of dialysis or a transplant. Feel free to rant a bit but also hopefully some positive stuff.

I am rubbish at checking threads but will try to come back to this one, even if no one else joins, it might serve as a nice resource for others to know they are not alone.

So...if you are renally challenged, welcome!!

Glad you're feeling the positive effects of your dialysis @OrganTransplant123. Do you have to make your own way there each time, do you at least get free parking?

Sorry you're feeling rough @SandysMam. Having kids and being ill is crap at the best of times.

My ulcer has gone, I've been to the dentist and actually had a cracked filling with infection underneath, so that's been repaired and had a polish and scale done, and my mouth feels almost normal now. Back on my usual amounts of meds, thickly cough came right back, didn't miss that.

I have my covid vaccine date! Getting the first one next Saturday. DH will take me incase I have a funny turn (doubt I will) but best to be safe.

@SandysMam ulcers are caused by my low chemo tablets, nice little side effect from them. Plus on amitriptyline for pain which is giving me dry mouth, so lots of things causing in icky mouth.

Ah sorry, I love trying to find a solution to people’s ills!! I would make the worst doctor so glad your mouth is feeling better!

I would make an amazing doctor. I've been binge watching Greys anatomy for the past two week, could easily whip out an appendix or a brain tumour in half an hour.

Don’t say that, they will have you in the Covid ward doing rounds
I’ve devoured the whole of Bridgerton! It really brightened up my January for sure!

I had to start @SandysMam as my bloods went even worse. I’m feeling better than I have in weeks. Much less tired and my appetite has returned. I’ve lost about a stone and a half and my BMI was only 19 to start with so I need to put some weight on now.

You can get free transport @AdditionalCharacter but DH is insisting on driving me in as he is worried about covid. It’s really disruptive though with home schooling so I think I’ll go with transport soon. They gave me the vaccine when I had my line fitted so that’s a huge relief.

I've not watched Bridgerton yet, it's in my to watch list though.

That's good about transport Organ, at least you can fall back on that if you need to.

Do you think eventually you might be able to drive yourself OP? I know it will save my life but I really have no idea how it will work when I need it with DH’s work and the kids etc!! The logistics worry me more than the dialysis itself!

Not OP I meant @OrganTransplant123 my brain is ridiculous at the moment!!! Sorry!!

Had my first covid vaccine yesterday. Felt fine, just a sore achey arm until around lunch time, feel like I've been hit by a bus. Cant take myself to bed as lying down too long makes my tumours pull on my kidneys. Was in bed for a bit and already feeling the effects of it. Feel like I've been hoofed in the kidneys, so much pain.

Hoping I feel better tomorrow.

Oh you poor thing, I have heard that if you have had Covid already the vaccine makes you feel rough but try to think of every wave as your body gaining strength!! Can you take paracetamol? Hopefully you will feel better tomorrow.

Thanks. Feeling better today, well from around 5am anyway. Temp was over 39 at one point. Going to be a long day of home schooling before I can go to bed.

Ah well done your body!! Can you sack it off today and have an “educational” movie day?

@OrganTransplant123 how is the dialysis going? I have been thinking of you and hoping you are settling ok on it.

Hi @SandysMam Thanks for asking, I’m doing ok. First day on transport today, it was a taxi, worked v well. I’m feeling more like myself apart from after dialysis sessions. They completely wear me out. I’m still in bed trying to muster up the enthusiasm to get up.

@AdditionalCharacter sorry to hear you felt so ill. My consultant said that most people who have had covid feel ill after the vaccine. I felt fine but apparently that means I may not have generated an immune response. They warned me when I had it that I might need three doses due to my immunosuppressants.

We've. Done ok, DC have plodded on and they did PE playing an energetic switch game

@OrganTransplant123 glad you're feeling more like yourself. A private taxi is far better/safer than getting on a transport bus with other people.

I had covid in October, so makes sense if it's worse if you've had it. I'm hoping the second dose isn't as harsh, hoping to be back at work by then.

Hi everyone, how are you all? If anyone is still here!

I am feeling pretty low today, feeling quite hopeless really but think that because of all this lockdown stuff combined with hurtling towards dialysis and transplants cancelled. Keep bursting into tears and feel like I can’t cope with the smallest things which is really unlike me!

Trying to keep my spirits up with little treats and nice tv etc but so worried about what the future has in store. Not sure why I’m posting really, just thought it might help to get it out!

Hi @SandysMam it is all very overwhelming. Try not to panic too much about the unknown. The dialysis isn’t that bad. It’s the travelling I hate more than anything. On the unit everyone is in the same boat and it soon becomes normal.

Ah thanks @OrganTransplant123
I think overwhelmed is exactly the right phrase. I am in that limbo where I am starting to feel really rough but still look ok so no one makes allowances for me. I honestly could sleep and sleep and everything feels like an effort! I think the cold isn’t helping, it has really slowed me down!
Glad to hear the dialysis is ok though, I do take comfort from that. Have they mentioned you being able to do any PD at home or anything?

There’s a delay with seeing the surgeons for the PD which is a pain @SandysMam The dialysis leaves me feeling really tired but after a nap I’m usually ok so instead of being exhausted 7 days a week, it is just 3.

The unit put me at ease immediately when I arrived for the dialysis. I was feeling rotten and sorry for myself after having the neckline fitted and it really helped that they were really no nonsense and brisk about the dialysis.

Hope the tiredness eases off for you.

Ah yes that makes sense, I guess they have cancelled all non essential surgery. Feeling exhausted 3 days a week would be amazing lol! Did you sort out how to have a shower etc with the line in?
Thanks for posting, just knowing whatever I am going to go through, someone has already experienced does really help.
I sort of feel like it will be a relief to start but on the other hand it would be so much easier to get the kids back up school!

Hi all, hope you don't mind if I join this thread, have had two kidney transplants and also had hemodialysis and pd dialysis at home (both manual and machine overnight) any questions I'd be quite happy to answer.

Hi @HoneyBeeGood yes lovely to have you here!!

I guess from a selfish point of view I am looking for positives at the moment!! Just at that point before needing treatment but it is coming and feel like I’m standing on a cliff edge, so scared of what’s to come! The pandemic is definitely not helping as no distractions and constant talk of transplants cancelled and treatment disrupted.

How are you doing now? I guess I just want some hope that I can get through this all!! No pressure

I felt the same before dialysis.

Quick potted history, born with no left kidney, right kidney damaged with urine reflux as a child. Although I had no idea there was anything wrong with my kidneys until I was pregnant with DC2, when they thought I had pre-eclampsia and just happened to scan my kidney and found the problem. eGFR was about 33 then and it took 12 years to get to the point of needing treatment.

DH was very luckily a match and I had a pre-emptive transplant without needing to go onto dialysis. Everything was fine for approximately 3 years when I had a sudden severe episode of rejection. They managed to save the kidney but it was damaged and so started to go downhill. It lasted another 4 years before I needed treatment.

Started dialysis in 2018, I chose to have hemodialysis as I didn't like the idea of pd. (Really wasn't keen on the idea of having a catheter coming out of my stomach). Going into the unit 3 times a week was fine and I actually felt loads better after each treatment. I have a lot of water retention and HD took off 2 litres each time which was fab and I had loads more energy. As far as I was concerned there wasn't really a downside and going into the unit on regular basis meant you really got to know the staff and other patients and it was like a big family.

Unfortunately I ended up having a lot of problems with the fistula in my arm which ended up collapsing as I have very narrow veins, so I had the choice of have a big operation on my arm or doing PD. I chose to do PD which in retrospect was not really the best decision for me, I had a lot of problems with it and it wasn't taking off the fluid that it needed to. Although being at home and having the treatment at home was really nice (I live an hour's drive away from the hospital). It was getting to the point where the consultants were saying I needed to have the operation on my arm when I got the call that they had found a kidney for me. So I had the second transplant in January 2019, two months before lockdown so I am very very lucky indeed! A year later everything is fantastic, I feel so well and I had my first vaccine yesterday!

So try not to worry about dialysis, I actually felt so much better on it than I did before.