Seeking advice

[ellen3]

My egfr result is 18 but my Nephrologist says it's realistically nearer 15. I have damage/calcification to my kidneys thought to be caused by extreme intake of vit D over extended period. I have extreme needle and hospital phobias. I am 42. My weight is 43 kg. Dialysis and transplant may not be possible due to my extreme phobias. My diet is almost vegan. I have several additional health conditions including Osteomylacia and have experienced several fractured/broken bones. Advice please.

[B0xermad]

Hi ellen3,I wish I could help but cannot advise you as your kidney condition is different from mine,I do hope someone on here can and send best wishes to you .

[ellen3 in reply to B0xermad]

Thank you BOxermad. Best wishes to you.

[itzmich]

I hope you trust your doctor and he can go over your options with you. Also maybe a little time with a therapist to help you sort through all that you are going through right now. You are not alone this is all overwhelming for all of us with CKD. Prayers for you in your journey.

[RickHow]

Hi Ellen. It is quite normal to turn to every available source to seek advice given your stats. I really don't know what anyone can say to help your situation. You (and I guess your doctors) think that long term Vitamin D use (high levels). You were likely given such high dosages to combat your Osteomylacia (Vitamin D is the common treatment). But during that time it would seem your doctor monitored your Vitamin D level. But there is no good to come out of reviewing the past and who did what, etc., to get you to your current condition. It did strike me as a little odd that your blood test said your egfr was 18, but for some reason your doctor thinks it is lower. But here too, what is the difference. The numbers are in the same low range.

Now about your phobia. No one likes a hospital. But hospitals are the scary places they used to be. Typically they are modern facilities, with nice rooms with their own bathroom and once you are settled into a room there really is nothing to fear about the hospital itself. BUT with a phobia it is difficult. If and when you need a hospital, before going, ask your doctor for some oral medication which will help to calm your nerves. Have someone with you that you can rely on and helps to make you feel more secure.

A fear of needles? You must have had so many tests and procedures, due to your conditions, over the years, that by now you are kind of used to the needles. Here too no one wishes to have needles. But you can not expect to just let your condition worsen simply because you fear the needle. Think of the bigger picture that needles provide you help, not harm.

While it is difficult for you, you certainly can not refuse dialysis nor transplant because you don't like a needle. For dialysis again, ask your doctor(s) for something you can take to calm your fears and nerves. As for a transplant, not to be rude, but don't be silly Ellen. At such a time this is a life saving event. A phobia of hospital and needles versus life saving operation? The obvious choice is operation AGAIN, get medicated. For the operation itself you won't be aware of any of it. And facing reality at this time, just needing a transplant does not mean one will be available. In the United States alone over 93,000 people are on the waiting list. Typical wait time is 5 years and if rare blood type or some other condition it can be 10 years. So concentrate on what you can do NOW, not what may be years from now. It will be one less worry for you.

I have terminal cancer. At first I was naturally overcome by the news. I searched the internet for options. Drove my doctors crazy with questions. Worried every moment about what if this happens, what if that happens, when will it happen, how will it happen. After a while (4 ot 5 weeks or more) I realized something. No matter how I worried, no matter where I searched, no matter anything, I was simply wasting my time and making myself worse. And what for? I decided it is better to make the best of each day. To appreciate the days I have (which now has fortunately been a few months) and to live as normal as possible. Sure I have bad days when it doesn't leave my mind. But most days I live normally. I enjoy the days I have instead of worrying and waiting for the inevitable.

The best advice? DO WHAT YOUR DOCTORS TELL YOU. Not what I tell you. Not what anyone here tells you. Be strong.

[footyfan]

Hi, my mum was suffing advanced kidney disease, possible due to diabetes, longterm use of a whole host of psychiatric medication for over40 years. Dialysis was mentioned, but due to her mental health it was not a realistic course of action, however, she was 72 at the time and had vascular dementia as well as being a full time wheelchair user following an RTA 20 years previously..

As a family we discussed it at great length and as it was felt that it would only give her a longer life, but that much of that time would be spend at the hospital getting dialysis. In the end we all had to accelt her life was coming to an end, and we discussed with GP and she and they decided that quality of life was more importantant than quantity! She had what is known as advance directive (a yellow folder) to avoid unneccessary life saving interventions.

It was agreed that she would receive 2 blood transfusions as day patient, after which her treatent would in all essence be palliative. She would be given antibiotics if required, and pain relief but no treatment that would mean a stay in hospital. Visits to hospital would also be seriously avoided.

She lived a further 6 months and enjoyed 2 holidays away with family in her favourite Uk holiday places, along with carers, before I tucked her up in bed for the last time. She died peacefully in her sleep and I am so glad that I can say she had a good death.

Dialysis is not for everyone, for all sorts of reasons. Once started dialysis is difficult to stop unless a transplant is in the offing so it has to work for you! Find an understanding doctor/ support team to see if it is necessary, or if there is an alternative. Good luck