Newly diagosed as stage 4, overwhelmed and scared. Any advice?
Posted , 6 users are following.
Hi, just joined. PKD, which I believed was going to be slow developing and not a problem until much later in life. My prognosis is now stage 4 and deteriorating rapidly. I'm 45 and really frightened. I herited the condition from my mother who had a transplant at 52 and had a terrible time and unfortunately passed away a few months later. That was 25 years ago and I understand things are incredibly different now. Any advice or fellow patients in Dorset would be gratefully received. Thanks, Kate
2 likes, 11 replies
helen54849 katethorp
Posted
Hi,
Don't be scared I was at stage 3 for ages and then when I hit stage 4 I orogressed quickly to stage 5. I have been on dialysis since Nov 14 and had just one failed call off the register (to be expected) I am due to have a transplant in two weeks off my friend. I feel for you and know exactly where you are coming from. Even though you are expecting things to progress your whole life when it comes down to it and you are told its time it is still a massive shock even though you know its coming at some point. Give your self time to process the next steps and do your research about which dialysis you think will be best for your lifestyle so this isn't a rushed decision and more to worry about. There are two types haemo and peritoneal, haemo is a small op ffor a fistula then 3 times a week in hosp for a few hours, there are quite a few food and fluid restrictions with this, obviously there is more to it but ask in your local unit if you can go and see and speak to the people that actualy have it that is what I did and it helped. Then there is peeritoneal your have a pipe in your stomach by an op and you can do this at home right away. I don't want to put to much info your way, but I do PD so any questions to hep with your decision fire away I will answer what I can honestly. I do this at home every night for 8 hours I work full time, have two children and run the family business so have more of a normal life. I have no restrictions, its not so bad I promise. I am scared for my friends as I don't want anything to happen to her I love her dearly she is like my family. You are bound to be scared as you have seen first hand and lived through what can go wrong. You hit the nail on the head 25 years is a long time in medicine. I am so sorry you lost your Mum in such a way (I lost my Dad so can relate) however does not mean you will be the same. You need to do a bit of research and get your head in the right place to fight your own your fight you have support here and I will be here every step of the way. Chin up sweetheart and keep us posted and remember any questions ask away I will try me best xx
emmaaw helen54849
Posted
Is stage 3 a point to be concerned about? I'm stage 3 now just got my results and the doctor said he doesn't need to see me. Anything to look out for?
helen54849 emmaaw
Posted
Depending on the reason for your CKD yes and no. Have you got chronic or acute CKD? There seems to be differences in treatment depending where you live. I have always been under a neph since I was 13 and just went for 6 monthly bloods to start with. I stayed at stage 3 for years (there is also a lovely lady on here who has been stage 3 for years and she only has one kidney) you may stay at stage 3 and never change from that but I would insist on 6 monthly bloods and urine test just for your own mind, even if your GP does this. All you can do at this stage is avoid ibuprofen and keep your blood pressure under control, CKD kidneys hate both of these things. Avoid salt and especially low salt products they dont like this either. Do not change your diet unless you are told to do so, it is dangerous. When you have your bloods done you should be told about your phosphate and potassium levels if they are ok do nothing as having a low phosphate/potassium diet if your levels are ok can lower them to dangerous levels so you would be at the same risk of them being high. If you smoke stop (I did) make sure you exsercise and hope you stay at stage 3 good luck. x
katethorp helen54849
Posted
Helen, thank you so much for your really helpful advice. I have ADPKD. Autosomal polycyclic kidney disease, inherited from my mum, Diagnosed at 19 I'm now 45. My function has deteriorated greatly in the last year with a GFR of 23 following 3 blood transfusions and 2 iron as I'm I'm really anaemic. seeing my renal doc next week so will definitely quiz him some more on life style changes. Thank you x
helen54849 katethorp
Posted
Kate,
You have been through the mill, no wonder you are scared. Like you I was stable and then from April 2014 to September 2014 my GFR plumited so I know exactly where you are at. You are chronic like me and so i doubt there is much you can do at this stage. Ask your renal Dr about possibly starting on EPO if you have it with an iron infusion that you can have it alone after it may help. I haad it with my first iron infusion and that stood me in good stead for a year I had EPO alone for a couple of months then could stop it alltogether, then I had to have another iron infusion and was good for a bit. My iron is ok but HB levels low so back on the EPO every 4 weeks. Its worth a mention as it may help and it doesn't harm to ask the worst answer will be no, but nothig ventured and all that. Have you been asigned a dietician as yet, it may be worth asking about that too. Mine works with my neph and looks at my bloods then we speak if need be and she gives me pointers I find the input really helpful. Do let us know how you get on at your appointment and remember you are not doing this alone. I have my pre op tomorrow for my transplant next week eek. x
katethorp helen54849
Posted
Thanks Heven, EPO has been mentioned and despite asking about diet etc was not given any further info. Good luck with the pre-op. I guess I'll can expect that soon. I'd love to know what is involved? You're a massive help. Thank you for the advice x
helen54849 katethorp
Posted
Hi,
Pre op went fine however that was just the end bit of the poking and oroding i'm affraid. First you will have tests to see if you can have a transplant (some people can't depends what is wrong, if auto immune some times ones body will attack the new kidney, therefore sometimes one can't be considered) then when you get to about 20% GFR you are on work up to see if you are ok to go on the doner list (you go on this list even if like me you have a live doner) first you have bloods as they need to double check your type and check for antibodies etc, then you have a chest xray, a heart scan, an ECG and you have to go on an excersise bike with a mask over your face to test your lungs. The pre op is about 15 viles of blood taken, swabs for MSRA, another ECG and chest xray just to be sure everything is ok and I am sure there will be more bloods next week. I was told my GFR was good for another 18 months at least and I lasted 7 so they just dont know (even if you tell them they dont listen) I was also told that live doner work up took 6 months when in reality due to NHS waiting times for all the persons tests (You do need to make sure that the other person is safe) it took 2 years. Hopefully you will be good for a while longer yet before all this starts x
ron64987 katethorp
Posted
katethorp ron64987
Posted
Thank you Ron. I'm back in hospital after a blood test that shows my eGFR has dropped despite 2 tranfusions and that my potasium is a bit all over the place. I;m waiting to see m renal team next week. I was an inpatient for 5 weeks which is distressing in itself and here I am a week later, with more drips ad ECGs, all a bit scary. Ill keep you posted. Thank you fo your help x
elizabeth63848 katethorp
Posted
Hi Kate
Sorry you have been poorly and in hospital. I hope they are taking good care of you. I'm stage 3B. Newly diagnosed last week. I hope you will soon be home and your egfr is more settled for you. Best wishes Elizabeth
jj73105 katethorp
Posted
Sorry you're going through this.
Feel better Kate. Hang in there.