A friend told me tonight that I tend to go over the top with some things since my husband has been diagnosed. Actually she didn't add the "since your husband has been diagnosed" since she has only known me during that time. But yes, I have changed a lot since his diagnosis.
Why am I writing this post? I want my friends to know that I don't mean to go crazy by eliminating all plastic from our lives, growing my own food to prevent chemicals from being part of our diet, and being so careful about what my family eats. I'm doing it because I feel helpless to do anything else. I can't perform a miracle to save my husband's life, this is the only thing I can do. I can control what goes into his body to try to keep him as healthy as possible. I can stop the chemicals in plastic from leaching into our food by storing it all in glass. I can prevent chemicals and antibiotics and who knows what else from entering our bodies by growing and cooking everything myself and buying only from local farmers that I know well. Am I being extreme? Maybe. Is my family worth it? Absolutely. Do I judge anyone for the choices they make in regards to food, plastic, and things they put in there bodies? Never. We all have to do what we think is best for ourselves. When I say I worry about something or I won't eat a particular something, I'm not trying to preach, judge, or say someone else is wrong to make a different choice. I need to do this, over the top or not, this is something I need to do. Even if the only benefit is that I feel like I am doing something to save my husband's life. I do hope my friends can understand that.
Monday, May 28, 2012
Checklist for PD
I have made a couple of posts that include items you will need to purchase for starting and continuing PD. To make things easier I have created a printable check list that can be found here. Make sure you not only print out one for yourself, but print them out for friends and family so that they are able to help you by buying some of the items on your list. I know how hard it is to ask for help, but I'm learning that people do want to help and giving them a way to help makes them feel good. I have been very blessed by my friends.
Clothes for after surgery and beyond
There are some things that you should be told BEFORE surgery that you aren't. One of them being, you will need new clothes. Depending on the doctor, the catheter will be placed around where your belt area might be. It also depends on how you wear your shorts and pants. If you wear them so the world can see your underwear, you will be fine, but if like my Husband, you like your underpants to be covered, you may need to purchase larger sized pants. You don't want anything tight where the catheter is, so belts are not an option, so the choices come down to - larger pants with suspenders, regular sized pants worn below your catheter, or pants worn with the waist ban above your catheter (this option could be a little scary if there is a chance of them falling down and pulling on your catheter).
Hubby hasn't really decided which he prefers, but all of the options require the purchase of new shorts and pants. This would have been easier before the surgery, when I had a little more time to shop. Today I went to a few stores with my daughters and we had a hard time finding anything that would work. We did end up with two pairs that seem to work, but that do require suspenders, which he doesn't own.
If you are having a surgery that affects your waist line area, consider doing some clothes shopping before so you will be prepare.
Hubby hasn't really decided which he prefers, but all of the options require the purchase of new shorts and pants. This would have been easier before the surgery, when I had a little more time to shop. Today I went to a few stores with my daughters and we had a hard time finding anything that would work. We did end up with two pairs that seem to work, but that do require suspenders, which he doesn't own.
If you are having a surgery that affects your waist line area, consider doing some clothes shopping before so you will be prepare.
Sunday, May 27, 2012
Day 5 of recovery
Hubby is doing better, he is moving around more, talking more, and eating a little bit. He has lost a lot of weight since the surgery. He is spending most of his time in the recliner, but any improvement is good. He has two appointments this week, so those will be the first times he ventures out of the house. Right now he doesn't think he can sit in the van.
Another friend stopped by last night with some supplies. I can't remember if I added to the shopping list for all of you, another item the nurse told us about... antibacterial body wash. This is to protect your port from infection while you shower. I'm extremely thankful to my friends for helping with supplies. It is amazing to see all the items on the shelves.
Ok busy day, so I must go!
Another friend stopped by last night with some supplies. I can't remember if I added to the shopping list for all of you, another item the nurse told us about... antibacterial body wash. This is to protect your port from infection while you shower. I'm extremely thankful to my friends for helping with supplies. It is amazing to see all the items on the shelves.
Ok busy day, so I must go!
Saturday, May 26, 2012
There will be days like this
Today has been long and hard. It's my daughter's birthday, so we baked a cake and she decorated it (this was the fun part of today). I mowed the lawn after fighting to get it to work. I moved some soil from the front yard to the backyard and into the garden beds. Took care of Hubby, made lunch, cleaned the house (it is amazing how it can go from looking great to messy over night), and then while making dinner another challenge occurred.
Water, pouring out from under my oven..... I couldn't figure out where it was coming from, until I opened up the cabinet under the sink and poured water down the drain and it came pouring out into the cabinet. I have long wanted to clean out that cabinet, but this is not how I wanted it to happen. With everything going on I feel very overwhelmed by this issue. I have no idea how long this problem has been occurring, but everything under there is wet and the cabinet is probably ruined.
Lesson learned here? Never shove anything under the kitchen sink. We think something got caught on the pipes and pulled them apart. Thankfully it appears to be an easy fix, but the mess is going to take me the rest of the night to clean.
Water, pouring out from under my oven..... I couldn't figure out where it was coming from, until I opened up the cabinet under the sink and poured water down the drain and it came pouring out into the cabinet. I have long wanted to clean out that cabinet, but this is not how I wanted it to happen. With everything going on I feel very overwhelmed by this issue. I have no idea how long this problem has been occurring, but everything under there is wet and the cabinet is probably ruined.
Lesson learned here? Never shove anything under the kitchen sink. We think something got caught on the pipes and pulled them apart. Thankfully it appears to be an easy fix, but the mess is going to take me the rest of the night to clean.
Schedule time off
Hubby's surgery was Wednesday, so it has been 4 days of recovery for him so far. I have made a lot of trips to the pharmacy for medications and gotten up about a billion takes to take care of him, while continuing to take car of my girls, the house, and everything else I am responsible for (I'm not complaining at all, I love my family and would do anything for them!). After crying over the mower not working, I realized I need to learn to ask for help and to plan time for a break. I have been going non-stop since earlier this week and my body is about to give up on me.
Why am I sharing this with you? Because sometimes you need to know you aren't alone, sometimes you need someone to say it is ok to ask for help. When your loved one goes in for surgery, plan a week of just staying at home with them. Don't be afraid to ask for help, I know it is hard, but you just can't do it all. Ask if a neighbor can mow the lawn, see if a friend can come over and help you with your daily chores, see if a friend can drive your children where they need to go. And most importantly, if it is 90 degrees outside, take lots and lots of breaks if you are mowing the lawn, moving soil, and working on your main food source... your garden (this is from experience!).
Why am I sharing this with you? Because sometimes you need to know you aren't alone, sometimes you need someone to say it is ok to ask for help. When your loved one goes in for surgery, plan a week of just staying at home with them. Don't be afraid to ask for help, I know it is hard, but you just can't do it all. Ask if a neighbor can mow the lawn, see if a friend can come over and help you with your daily chores, see if a friend can drive your children where they need to go. And most importantly, if it is 90 degrees outside, take lots and lots of breaks if you are mowing the lawn, moving soil, and working on your main food source... your garden (this is from experience!).
Friday, May 25, 2012
The visit from the dialysis nurse
Today was our visit from the dialysis nurse. She came in and introduced herself and immediately asked where we would be doing Hubby's hook up, I showed her into the bedroom. When hooking up or disconnecting from the dialysis machine, you need to do it in a space where you can close all the windows, close the door, turn off any fan or air conditioning. All the supplies from the post yesterday also need to be within easy access of where you are doing the hook ups. Our bedroom is the perfect spot. We have the small shelving unit in there with our supplies and we are able to close everything to keep the area as free of germs as possible. She said our room was great and she really liked the shelving set up.
After that she asked where we would store the boxes of solutions and tubing. We decided on our living room and she was pleased with that space too. Then she asked to see where we store medications, so I took her into the kitchen and showed her the cabinet with all our medications inside. I actually didn't know this was a space she was checking, but thankfully it was organized and I was able to pull all of hubby's medications out without an avalanche.
Then we sat in the living room while she told us some information, answered questions, and played with our dogs :-) I had the dogs in the sunroom when she arrived, but she said she loved animals so our younger daughter let them in for a little bit.
Most of the information she shared I already knew from reading the binder provided by the other dialysis nurse and from research online. Some of the information was news to me and not all great. One piece that surprised me is that the wait for a kidney transplant is about 6 to 7 years. Kidney transplants are the hardest to get because there are so many people waiting and because of the criteria the donor kidney has to meet. There are other options for transplant, like a living donor, so there is hope! Currently hubby isn't on the transplant list because he doesn't qualify, but we will be speaking next week to the surgeon to find out everything we need to do to get him on the transplant list.
The cart arrived today, I'm very impressed with how quickly it arrived. I'm planning on doing a video on how to assemble it and if I don't make a fool out of myself or take 3 hours to do it, I will share the video with you.
*Disclaimer - all the information above is for information purposes only. I am not a nurse, doctor, or any type of medical professional. I'm a wife taking one day at a time while taking care of a husband with PK.
After that she asked where we would store the boxes of solutions and tubing. We decided on our living room and she was pleased with that space too. Then she asked to see where we store medications, so I took her into the kitchen and showed her the cabinet with all our medications inside. I actually didn't know this was a space she was checking, but thankfully it was organized and I was able to pull all of hubby's medications out without an avalanche.
Then we sat in the living room while she told us some information, answered questions, and played with our dogs :-) I had the dogs in the sunroom when she arrived, but she said she loved animals so our younger daughter let them in for a little bit.
Most of the information she shared I already knew from reading the binder provided by the other dialysis nurse and from research online. Some of the information was news to me and not all great. One piece that surprised me is that the wait for a kidney transplant is about 6 to 7 years. Kidney transplants are the hardest to get because there are so many people waiting and because of the criteria the donor kidney has to meet. There are other options for transplant, like a living donor, so there is hope! Currently hubby isn't on the transplant list because he doesn't qualify, but we will be speaking next week to the surgeon to find out everything we need to do to get him on the transplant list.
The cart arrived today, I'm very impressed with how quickly it arrived. I'm planning on doing a video on how to assemble it and if I don't make a fool out of myself or take 3 hours to do it, I will share the video with you.
*Disclaimer - all the information above is for information purposes only. I am not a nurse, doctor, or any type of medical professional. I'm a wife taking one day at a time while taking care of a husband with PK.
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