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Kidney Disease
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Apprehensive about meeting the Transplant Team in March

I have received an appointment to meet the Transplant Team on 26th March. I was kind of feeling ok about things but it's suddenly kicked in that things are moving quite rapidly. I was diagnosed with Glomerulonephrits 37 years ago and was told that I had mild inflammation and to keep yearly appointments to check all was well. For the last 12 months I have suffered with gout and have felt fatigued. I suffer with cramps of the feet and legs and also weakness. My last visit with the Nephrologist showed kidney function had declined to Gfr14. The Nephrologist said I should be put on the transplant list. I have had an ecg, heart X-ray and echo cardiogram. I have an appointment for a kidney ultrasound and hepatitis b injection. I would like to hear from anyone who has been at this stage and who can offer any advice. I would like to add that this site has helped me a lot in dealing with this terrible disease. I do not feel comfortable in speaking with family, although my two daughters have been extremely supportive.

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Hi, I went through all that in 2017. 3 trips to hospital to get all the testing done. My advice is to take it one step at a time. If you think about the whole picture, it can be overwhelming! I just went to each test and checked it off my list. I went to Houston, so that was nerve wracking in itself. But I made it through and you will too. Praying for you as you go thru this journey😀

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Thank you for your reply Bunkin. The advice you give does make a lot of sense to me now that I have got over the shock of it all happening at once, and thats in taking each day as it comes and one step at a time. My prayers are with you too that you continue to live a long and healthy and happy life.

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Thank you so much😀

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Hello, I am 52 and was diagnosed with Glomerulonephritis four years ago aged 48 but at that point my eGFR was already down to 17% and it came as a complete shock as I don't have high blood pressure nor diabetes and there is zero history in my family of kidney problems. I carried on working full time till mid last year but once I hit 12% I was really struggling to keep up at work and was making so many mistakes and feeling so ill that I had to go sick. I have never had any time off sick in the past and my company whom I have worked for 22 years were very supportive but at the end of six months my sick pay ended and I was on my own. I am now relying on an insurance policy that I took out many years ago to provide me with a small monthly income. I am the only one in my family that worked outside the home so it has had a huge impact on our standard of living. Over the last couple of months my eGFR has dropped further to 10% and like you I am having problems with Gout and feel fatigued all the time.

I am not yet on dialysis but am planning to start PD shortly. I have had all the transplant list tests X-Ray, ECG, etc and met with the transplant surgeon and co-ordinator this past Monday. The meeting itself is just to do a final assessment of your suitability and for them to go over the operation and discuss the risks and ramifications of a transplant and how long it is likely to last, how long the waiting list is etc.

My wife comes to all the appointments with me which has been good but other than her I find it difficult to talk to my family about it all too as few people have any idea of the impact of kidney disease. I was warned a long time ago by a kidney nurse that after the initial shock and kind words of support most family and friends will soon develop "Sympathy Fatigue" and I have to say she was right so I tend to keep it all to myself.

Regarding the Gout have you tried cherry juice as that certainly reduces the pain of Gout for me. Other than that the best advice I can offer is to take one day at a time and stay close to this site as nobody outside this community has better advice and support to offer than the good people who post on here.

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my story is similar to yours...except i have known about my ckd for 18 years...to have learned only 4 years ago with such little function left must have been devastating......Having kidney disease isnt just depressing...its expensive for any treatment that we decide to go with...i am down to 16 gfr and have looked in PD fir when i need it...my Neph put me on the transplant list but i have not gone for testing yet..i have been asking what the testing will cost as our insurance is mot that great and we llve 350 miles away from transplant center..so it would also be cost of hotels for testing and one month after transplant...were you able to ger disability or early social security to help pay since you had to quit your job ?

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Yes it certainly was a shock. Regarding the medical expenses things are somewhat different as I live in England so some medical costs including testing for the transplant waiting list we don't have to pay for as we contribute to a national health service out of our taxes. I have not applied for any social security assistance as yet and don't know where to start with that as I have worked since I was 16 and never claimed anything before.

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even with funding to help pay most of the costs...it is still hard to pay for the "rest" of what this costs...especially when we can no longer work...just the cost of living without a disease is hard....

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Hi Rabbit01 and thank you for your reply. Im not surprised it came as a shock to you to learn only 4 years ago with no other health issues that you have kidney problems. I have lived with this for 30 odd years as I mentioned but its only been in the last year have i had a lot of problems with gout, high potassium and slight hypertension. My husband died 5 years ago so its hard on my own with no-one to talk to, but like i said my daughters are really supportive and i can talk to them, and they will come with me when I see the Transplant Team in March. With regard to cherry juice, I have taken this but have to watch as cherries are quite high in potassium. I hope that you can delay dialysis for a long as possible and when you do eventually start it hopefully you will begin to feel a lot better. I love this site and so glad I found it, It does help me get through everyday a lot easier and everyone seems so positive. You take care and let me know how you get on with the PD.

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All the testing can be very nerve-racking that’s for sure but they want to make sure that you’re in very good health so they don’t have any complications while you’re in surgery. kidney disease is very stressful not just for yourself but your entire family I had a kidney transplant in 2006 and it failed three years ago I’m back on peritoneal dialysis I’m not going for another transplant because the cost of the medicine is so high. I also work full time. After you’ve had your transplant you lose your Medicare coverage after three years, then you no longer qualify for Medicare and must have your own insurance to cover the cost of the medicine and most of those insurance companies set the Transplant drugs at tier 3 -and the tier 3 drugs are very expensive. Although some companies Have programs where you can get lower cost medications through them but you have to meet their financial guidelines. Best of luck to you.

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it is all very ecpensive...how much does it cost to be on PD ?...does medicare continue to help with that ?

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Medicare pays 80%. So you will want a Medicare supplement policy, which is much cheaper and then you will have your pd covered. If I had to pay out of pocket for pd, it would be $86,000. Per month. With my Medicare and supplement I pay -0- per month. Once you start training for dialysis you qualify for Medicare.

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how much does the supplement insurance cost ?

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Hi 3Kidneys, Sorry to hear that your transplant failed 3 years ago. I too live in England so I can imagine how devastating it can be having to finance your medical care. I hope the peritoneal dialysis is working well for you now. Take care and best of luck to you

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I’m doing well on PD. Thanks for asking. I work full time, and still manage to do most everything I want to. Of course you have to learn to listen to your body and when it says take extra care of yourself today, I try to do just that, because if I force myself to keep going, I know I will pay for it in pure exhaustion later. I work 7-4 Monday-Friday, and connect to my machine around 7 pm each night. So my only late nights- or nights I allow myself to be out later is Friday and Saturday- as I don’t have a set time I have to get up by. But I also have a 24’ line to my machine, so the only place I can’t get to while connected is the kitchen. I hope you’re doing well also. One day at a time.

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You are doing very well by the sound of it. Amazing how you keep working all those hours too. Yes we do have to listen to our body and know our limits too. I am doing as well as can be expected thank you. Best of luck and keep up the good work

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Before meeting with transplant committee make sure that you are the best you you can be. Be your best advocate. In my personal experience you must have ok from cardio, pulmonary, and other specialists. I even had to have up to date dental visits and colonscopy. Try to show you have tried to keep physically active even it is almost impossible because of the global fatigue caused by renal failure. I got a consult for physical therapy just to show I put in the effort (dr.s loved that). The transplant team will probably have specific suggestions depending on your risk factors. If you smoke QUIT. Too heavy? Show you are eating healthy and are losing weight. Also make sure you have a good support system to help after surgery. Financial planning to show you can afford the cost of anti rejection medications. Don’t be surprised if you have to come in 3-6 months for re-evaluation. Good luck and keep me informed. 🌷

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Thank you for your reply Pinktulips24. I have had the tests on the heart done, I keep physically fit through work and my last dental appointment was 2 months ago. I am trying to stick to low protein no added salt and low potassium. I am keeping open minded about what will happen and just taking each day as it comes also. There isn't much more I can do. Take Care and I will keep you updated.

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Hope things are going well for you. Just got a new kidney on St. Patrick’s day. Things do get better.

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Hi Pinktulips24 I had the first meeting last week Tuesday 26th March. It went really well, they did more blood tests so now waiting for the appointment for next meeting. Both my daughters are going to be tested to see if they are suitable to donate a kidney to me. Just waiting now for everything to come together. I have a positive attitude always and I think this helps a lot. So pleased that you have received your new kidney, and hope you are feeling well and continue to do so. Take care and thank you so much for your reply.

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