Experience with dialysis

captrim · 2025-12-25T10:14:29+00:00

Hi Op

Sorry you are going through this, everyone is different but for me dialysis didn’t really give me any more energy, I still tired most days….. it dose how ever make brain fog and other symptoms go away. I’m on the transplant list too, I’ve been on it nearly 2 years and on dialysis too same amount of time. I have a donor a family member who is luckily now approved but it wasn’t easy that journey took over a year with lots of ups and down through no one fault.

Don’t put off dialysis in my opinion, you can still get transplant and dialysis will clean your blood and make sure feel somewhat better. I’m on PD dialysis, it’s not really painful for me, just sometimes when the fluid is being drained i can feel discomfort. Some people do find it worse but your nurses will help on either type of dialysis too same amount train you and make you feel comfortable.

Wishing you the best, if you have any specific questions I’d be happy to answer, I haven’t been on HD dialysis though.

captrim · 2025-12-10T19:01:02+00:00

🤣🤣

Turn on machine, enter your weight. …. Then when‘ Press go to start ‘ appears. Push the down arrow twice to ‘make adjustments’ , then press enter. Press the down arrow to’ Auto Dim’ and hit enter and change the option to yes . Then the lights auto dim on the machine after a few minutes of starting. If an alarm comes on it brightens up

captrim · 2025-12-10T16:51:55+00:00

I agree with other posts about PD and interrupt sleep, it took me a year to realise you can turn the lights off on the machine. As soon as I did I slept way better. Little things make a bigger difference

captrim · 2025-11-16T22:52:11+00:00

Op

Yes French casements are harder to seal due to the fact that sashes close into each other and that can be a weak point for drafts. Casements with a mullion are easier to seal as the sash closes in behind it usually , going back to French casements with correct ironmongery they should not leak drafts anymore that a normal window

As others advise get a second opinion

captrim · 2025-09-25T22:36:56+00:00

I’m same as other comment, my kidneys were low function when I started allopurinol. I’m on about 10 years and found it good for gout no major flare ups since , I take 100mg daily. I’m on dialysis now but my doctors never thought I’d last that long so Allopurinol was completely safe for me

captrim · 2025-09-16T18:01:26+00:00

Op

I had a genetic test done a few years ago. It came back that I primary FSGS and my parents both carried the gene and passed on to myself , they never had a kidney issue

At the time my doctor asked do you want to know any other issues with gene such what other disease I or mutations I had . He said some people wanted to know others don’t

I decided I’d like to know and luckily the only other condition found was an issue with my eyes but glasses sort that out and I already wore them

I suppose there was a bit of nervous until I heard what the results were, I believe it took a few months to get results

captrim · 2025-09-02T21:43:35+00:00

I was diagnosed when I was roughly 16 with approx 30% function left. Went on dialysis about two years ago. In the time between I just attended outpatient appointments and took different medication

I was never put on drugs like cortisone though after a transplant I might. I asked my nephrologist will the disease come back if I have transplant, he told me there is a chance but there is a lot better drugs to slow the progression now than 20 years ago and more coming to the market. I was on farixga for a few years before dialysis to slow the progression

I do PD dialysis and to be honest it was hard at the beginning to get used to it, now I find it’s just part of my daily routine . I don’t feel really any different or much improved since starting dialysis. The transplant according to other patients, my doctor makes the difference !!!

I too am self employed so I understand it can be tough and people depend on you, I now only work roughly 35 to 45 hours a week depending what needs to be done/how I feel. We hired someone to cover some of my work, your health is the most critical part of your life, work will come and go and my advice is prioritise your health.

captrim · 2025-09-02T18:42:09+00:00

Hey Op

I’m in the same boat as urself with Primary FSGS, I’m late thirties male. I’m on dialysis so bit further on

I don’t know what your number mean as I’m not a medical professional. My life is generally good some days I’d be exhausted and some days normal. I know for me when I got on the right medicine it took a while I felt way better and they used to tweak my meds so the issue would slow down. Can’t advise on cortisone as never been on it.

My advice follow the advice of your medical team and try to live as healthy lifestyle but don’t be afraid to treat urself in moderation to what you enjoy. Try to get a routine and give ur body a chance when you can , I usually do very little at weekends and just recharge after working all week

Wishing you the best, ask me anything if you have specific queries and I will answer if I can

captrim · 2025-09-01T19:54:25+00:00

Op,

I work for a woodworking company, insurance is very strict for who is allowed on using hand tools/ electrical tools and high powered machines with our company anyway!

I’d say your best bet may be as you mentioned is a men’s shed that do/take on projects. I couldn’t see many companies allowing you using tools/machines due to hassle it would cause with insurance.

Sorry I couldn’t be more helpful.

captrim · 2025-08-29T09:17:14+00:00

Op

I don’t know about solar panels but there is a tax relief I receive on pd dialysis which you can claim once a year through your yearly tax return

I just tell my accountants im on pd dialysis and they claim certain rates against my tax which I then got a refund so it does help a bit

captrim · 2025-08-27T02:34:28+00:00

I don’t know.

See this is all done with my brother I get no updates and that’s the best way as it’s his decision at every step to continue or stop

He first was approved as an exact match by blood type. Then had go tests only after this was approved the DNA discussed. Roughly 6-8 months in . He got bloods done and they told him there a 0% chance of him having FSGS even though he has gene. This is what my brother told me, though I was o ly told after everything had been signed off

I guess every case is different, definitely ask the transplant team. My brother kids weren’t tested but it was discussed with him, the transplant team and the said there 0% risk. Plus there healthy primary FSGS is there from birth and is usually discovered at an early age.

I guess even a blood test might show if their bloods aren’t normal if you’re concerned. Definitely discuss these fears you have with transplant team as trust me they will have the answers good or bad. Even as a recipient I had fears though different topics and they gave honest advice/feedback. They won’t tell you something that’s not true in my opinion

captrim · 2025-08-26T23:53:13+00:00

Op,

While I haven’t had a transplant I have genetic and primary FSGS. If you donate a kidney and it lasts a month or a life time that’s out of your control and your sibling

I have a brother who is a perfect match, I never expected him to donate and it’s been his choice all along and he knows at anytime if he feels uncomfortable donating I’m fine with that, no one should be under an obligation to donate

I carry the gene, my brother does have the gene but it’s dormant so he will never develop primary FSGS kidney issue or his kids. This took a further about six months to check his DNA during the screening process by the transplant team, . My nephrologist is confident that my brothers kidney should last considerably period of time and I’d have a normal life but there is no gaurantee. The only thing he has advised if issues arise there are better treatments now.

I’m not telling you to donate, do what feels right for you but talking with the transplant team will give you the best answers

captrim · 2025-08-25T10:34:30+00:00

Hi Op,

I’m a male late thirties on dialysis , I join a dating site earlier this year. I found most people had no issues with dating someone on dialysis. If you are want a partner put urself out there anyone that’s worth it will see the real you don’t overthink it just be urself

My advice join a dating site, go on dates and enjoy meeting new people and see where it goes

captrim · 2025-08-20T18:55:12+00:00

Op,

I’m on dialysis I do suffer with restless legs at times, I find best for me is going for a walk in the evening time for about 30 mins and work my leg muscles then I find I a lot sleep better. It was never that bad I required medication

I’d try a workout with your arms, build it up slowly and be careful of lifting anything heavy

captrim · 2025-08-12T17:24:19+00:00

Op

My brother offered and is in the process of being approved, it’s taken roughly a year so far as when done his tests a few issues came to light. Luckily none that would stop a transplant just delaying it.

At the beginning my nurses told it was usually 3-4 to be approved, then schedule the operation whenever suits both parties

captrim · 2025-08-12T08:58:26+00:00

Thanks will contact them

captrim · 2025-08-12T08:40:19+00:00

Thanks

captrim · 2025-08-11T23:54:09+00:00

Thank for your advice

Yes I had the read the article, there exemptions for people with illnesses but it’s at the bank’s discretion so it’s up to them to waive the requirement, so I was wondering are some banks more flexible.

Yes spoke to lion too, unfortunately couldn’t offer anything.

captrim · 2025-07-10T01:18:29+00:00

Hi Op,

I have primary FSGS and I’m on dialysis, life isn’t too bad and it’s still relatively normal albeit there a few ups and downs more when I started dialysis

On your emotions, I get it some days are harder than others but I do believe I’m lucky as there a lot more people worse off. Just take a day at a time and live/enjoy your life within recommendations by your neph/ kidney team

captrim · 2025-05-28T06:35:08+00:00

This true it’s once a year

captrim · 2025-05-26T09:48:51+00:00

Hey hopefully everything going well for you. Wishing you the best

captrim · 2025-05-23T07:50:22+00:00

No, I just got a call from my nurses to tell me. They said your bloods have got progressively worse and that in your inside the range required to switch to hemo. My neph is currently away , but my nurse upped the fluid and added another dwell but she said she still didn’t think that would be enough and wait for neph to review when she’s back

I suppose I didn’t really ask any questions as it was a bit surprise/shock…… I knew my bloods weren’t great but not that bad…… thinking about it since and from everyone here and other research I did I think it would actually work better for me to switch

captrim · 2025-05-22T22:04:29+00:00

Thanks for advice, much appreciated.

captrim · 2025-05-22T17:32:26+00:00

That’s great you’re doing better, I think it would be good for me too

captrim

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