Well congratulations on getting the surgical part out of the way.Keeping my fingers crossed for next week when they do the first fill and drain. That will be his first experiencer with liquid going into his peritoneal cavity and it is a unique experience to say the least. Kind of feels weird or odd at first and he will feel a suction as it is drained out. They will not do a complete fill at first just enough to test the cavity and clear any fibrin out and a little bit of red fluid or serum may come out at first but do not be alarmed that's left over from the surgery.
Then he will be training on home use and manual exchanges he does himself to teach him how it is done and to be clean and safe. His hands will be raw from washing I promise you that after the first week, but he has to go through it to learn it.
Get ready for 60 square feet of boxes coming your way when his first order is filled. It will have everything he needs to do dialysis at home and then the machine will come in about 30 days and more fluids will arrive and cassettes to put into the machine so he will need lots of space for medical supplies.
You might want to get a large end table and put a piece of wood on top of it to make room for the machine and all the bags he will hook to it at night. Right now he will just use the IV pole he will get to hold the bag to fill but later on he will need a large area to hold the machine and fluids he will hook to the machine at night.
Think about getting a mini refrigerator to put in the room with him so he can have soemthing cold to drink or a snack if he gets hungrty he can reach in and grab what he wants and of course take his phosphate binders when he eats.
I do not know his situation but my bedroom is close enough for me to get up and walk to the bathroom next door and use the toilet when I need to but he may need an extension tube to reach yours depending on where it is located in your house. He can always disconnect and go to the bathroom but the fewer times each day you connect and reconnect the higher the risk of contamination and an infection so make it as simple as you can and try and stay connected the whole duration of the machine cycle which should be about 8 hours in the beginning at night.
That's the few tips I have for you other then get some plastic overlays to put on his surgical site so he can take a shower when he wants to and not get his access wet. He needs to keep that very clean and dry. They sell them on line and they are called surgical shields and cost about 10 dollars U.S. currency for a package of 8 I think..
Mary you will be just fine. They will take you step by step through the process and they will not let you go until you do have it all down.
Remember this. Your just there as a support person if he for some reason can not do the dialysis himself. You are not the person who will do this primarily but just as back up.
Your boyfriend is the one that has to retain everything your just there with the Pom, Poms being positive and to give reinforcement when he needs it. Your the cheerleader he is the player. It is his game your on the side lines.
Not to make your job sound trivial because it is not but he is the one that has to get the mental thing down and get his mind straight and ultimately he is the one responsible for his treatment and dialysis not you.
Just be there for him. He is very lucky to have you by his side during this time. It will test your patients and your commitment. He is in for a hard trip through life as kidney disease is no picnic. It is very hard on family friends and lovers as well.
Yes that's the thing I was saying about friends and family and lovers. They feel left out and its great he has his mind wrapped around the disease but he needs to have his mind wrapped around life as well.
The statistics say about 10 years on transplants but some go a lot longer and some less you just never know so you have to live life for every minute and with those minutes spend them with and on the ones you love. Not dwelling on the disease.
Some patients forget this and the family friends and lovers are the ones left behind because the disease consumes their life and that's not the way it is suppose to be. Remind him of that from time to time. You are part of his life not part of his disease. You DO mater.
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 ?