One thing to add. If your boyfriend has a choice of dialysis machines, ask what the differences are. I'm in the Toronto area and chose the Newton Cycler as opposed to Baxter. I was told by the nurses that the Newton Cycler dialysis fluid had a better Ph balance for your body which was gentler than the Baxter fluid. The cap that goes on the catheter tip from your stomach is also smaller.
Hello from Northern Ontario. I was diagnosed with Kidney Disease at the age of 16. At age 27 I started hemodialysis. Was on that for 3 years before my amazing Mother donated a kidney to me days after my 30th birthday (quite appropriate for giving me life twice!).
She gave me 12 great years of life away from dialysis. I went through rejection of that kidney in 2010 and the transplant team saved it (although very damaged) and me. I have spent the last 6+ years (since my rejection treatment) in semi-quarantine due to no immune system. It has had its challenges, but I have managed to continue to appreciate life to its fullest, no matter what.
In 2016 I had to make a choice about dialysis again. This time I opted for home PD (cycler) and have been on it for over 6 months and getting ready to be put on the list for Kidney #2 (unless I am able to find a live donor of course!)
I have had a lot of experience with this disease and while I am sure to learn from others here, since no two experiences are the same, I hope I can offer those with any questions, concerns, worries - both to patients and their families - a peace of mind about this journey and a positive outlook over the fear and anxiety that can surface at any time.
Cheers fellow Warriors!
I'm new to the kidney forums, wanting to reach out to others dealing with the same thing.
I have CKD due to a genetic condition called Alagilliy syndrome :/ I'm 39 with a husband, 2 cats & a rescue dog
I'm currently in stage 3 almost 4 with my latest eGFR rate being 31 and my creatine at 176.
The only restrictions right now are to try & go more vegetarian... Any words of wisdom from those dealing with it longer ?
Welcome to the board Wendy. I know you will find a lot of people willing to chat with you and discuss what is going on with them and their kidney issues and it helps to talk to others that are in the same boat as you are. It is very hard for people that do not have kidney disease to relate to those that do simply because they can not feel the effects of the disease that you feel.
There is also the psychological side of the disease and that is half the battle in and of itself.
One of the the things I found most helpful is to not live for the disease but to live with it. With modern treatments available today kidney disease is very manageable but it takes a lot of effort, time and work, and like anything else you only get out of it what you put into it.
I think a lot of us get into the why me mind set and become depressed and that's easy to do but the truth is almost all kidney failure is no ones fault it just happens. It is a disease that occurs across the world and no one is immune from it. Very few people have kidney disease from something they did in life that caused it like drug abuse or coming in contact with an outside element that causes the disease to flair up. There is some genetic possibilities but the reality is no one knows for sure what causes it. Again it does no good to point fingers looking for blame. Your time is better spent dealing with the condition and working on keeping the kidney function you have left with proper diet, exercise and medical treatment.
Any questions you have just ask and I am sure others will jump in to try and answer what they can for you.
Shirley they can put an emergency inlet in your neck to get you on Hemo therapy a lot faster so that is not an issue. The tissue is finding a clinic you can get yourself to and I can not help you on that. They will need to do surgery to get a fistula put in for long term hemo dialysis and that takes about 6 months total healing time but the emergency fistula will hold you until then,.. Your in for a lot of new training so get ready to learn a new way of life and diet and exercise.
Best of luck to you!!