Thursday, May 31, 2012

Your life will change

This may seem obvious, but I'll admit I wasn't aware of how much our lives would change.  I haven't been able to work since my husband's surgery and I'm not sure if I will be able to work outside the home once dialysis starts either.  Every day seems full.  I get up early and I go until about 9 at night.  I check the online world, watch a little TV and then go to sleep, wake up and do it all again.

Emotionally things change too.  There are periods of crying that I can't explain, periods of joy when things seem "normal" and periods where I am just going through the motions and trying to move forward.  It really isn't something a person can understand until they are living it.  No one could have prepared me for all the emotions involved.

Physically things change.  I'm guessing it is mostly from the emotional roller coaster, all the appointments, and the extra things I am doing for my Hubby.  For me it is also from trying to do a ton of gardening... far more than one person can reasonably do.

For Hubby I can only imagine how hard this is on him.  I see him struggling, but I don't know that I fully understand just how much he is going through physically and mentally.

I don't have any advice for how to get through it, other than to pray.  Without faith, I don't think I could handle all of this.  Praise God for little miracles.

The very first kidney transplant

The very first kidney transplant was done in 1954.  Ronald Lee Herrick gave his kidney to his twin brother.  Dr Joseph Murray, a surgeon from Boston, performed this first successful kidney transplant, saving Ronald's brother's life.  It also proved that a transplant was a viable treatment for chronic renal disease.

Ronald and his twin brother

The history of dialysis is pretty interesting.  It was in 1943 that the first dialyzer was constructed.  It wasn't successful, however, until 1945.  To read more about the history of dialysis, you can read here.

I use to say I was born over 100 years too late, but now I know I was born right on time, because without advances with dialysis and transplant, I wouldn't have more time with my Hubby.

Wednesday, May 30, 2012

Boxes are here

34 boxes of dialysis supplies were delivered today.  Thankfully they fit in the spot I cleared for them.  Each one weighs about 24 pounds, so I won't be moving them.  Thankfully the man that delivered them, put them where they belong, so they are all in place.

We had two appointments today.  One with the surgeon to check up on Hubby and start talking about transplant and one with the dialysis nurse.  The dialysis nurse told us that we will be getting one more very large box with all the tubing in it.  These boxes are just the dialysis solution.  While at the appointment with the nurse we were taught how to take daily care of the catheter.  We came home with a bag of supplies for doing that.  Our house is starting to look like a hospital, but Hubby is worth it!

Tuesday, May 29, 2012

The cart is built!

To hold Hubby's dialysis machine and discharge bucket, I purchased a Choice Knocked Down Stainless Steal 2 shelf utility cart - 33 3/4" by 21" by 37.  A search online of prices saved me $10 by purchasing this cart from The Webstaurant Store.  Make sure you search for the cart you want and check out all the prices, including shipping to get the best deal.

Why did I pick this cart?  Originally Hubby wanted a cart with a lip around the edge to make sure nothing falls off, but after meeting with the nurse and seeing the actual machine we realized that wasn't a good idea.  The dialysis machine has a door on the front that you need to easily open, which can't happen if there is a lip.  This cart can hold up to 220 pounds, which is enough to hold the machine and the bucket.  It has 4" wheels, which can go from carpet to hardwood.  If you can find 6" wheels that is even better!  This cart fits though doorways and after a lot of rearranging, fits around our furniture.  

When I opened the box the first thing I did was make sure everything was there.  There were 4 wheels, 4 wheel protectors, 8 nuts and bolts with washers, 2 shelves, 2 handles, a small wrench, and a hex key.  I read the directions completely and followed them exactly.  I put it together by myself since Hubby is already asleep and I really didn't want him to do anything until he sees the surgeon again.  

Before assembling I used sanitizing wipes to clean every piece of the cart.  When I cleaned the handles the cloth was definitely black with dirt.  The shelves have a protective cover, which was a pain to get off, so when I cleaned them, the cloth still looked clean.  But it is a good idea to do it anyway, particularly if you are using it for medical equipment.

Assembling the cart - If you have someone to help you, it will make putting the shelves on easier.  I was able to do it alone, but it would have been nice to have help.  I loosely attached the screws, as per the instructions, and then when both shelves were attached I used the wrench and the hex key to tighten them.  At first I used the hex key to hold the bolt in place and the wrench to make it tighter, but I found it much easier to use the wrench to hold the bolt and the hex key to make it tighter.

The wheels were pretty easy to attach.  Don't turn the whole wheel, just turn the piece that actually screws into the cart.  It took me about 30 minutes to put the entire cart together.  It took me about 30 minutes to make sure all the pieces were there, wipe all the pieces down, and get that plastic off of the shelves.  So plan for about an hour to put the cart together, with help you could probably do this in about half the time.

Have a specific question about why I picked this cart?  Just leave a comment with your question and I would be happy to answer it.  Hopefully I covered everything that is important in the above text.

A little note about The Webstaurant Store - I ordered it in the morning and by the afternoon they had shipped my cart and it arrived the next day.  I just paid for standard shipping, so I was quite impressed.  They have a map on their site that will give you the amount of time it will take for your item to arrive.

Monday, May 28, 2012

Over the top

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.

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.

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!

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.

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!).

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.

Thursday, May 24, 2012

Surgery is over, now what

Yesterday was my husband's surgery to have the catheter put in and I'm so thankful it is over and he is home with us.  At every hospital, at every dialysis clinic, things are going to be different, so my story is just that.... my experience and it may be nothing like yours, but I'm sharing it because I know when Hubby was first diagnosed I looked and looked, but couldn't find anyone that told how it was for them, so I'm hoping this will help someone.

After surgery, while he was in recovery, the dialysis nurse came to speak with us.  She was very organized and gave us a shopping list, a sheet of appointments for the next two weeks, and a binder of information.  She brought the actual machine to show us and gave me a spec sheet so I could buy a cart.

Let's start with the shopping list.  These are things that we need when doing PD.

Cart (this is to hold the machine and a discharge bucket so you can move around your home)
Bucket (at least 5 gallon)
Generator (big enough to run your dialysis machine when the power goes out)
Paper towels and wall mounting paper towel holder
Alcohol-based hand sanitizer
Antibacterial soap in pump dispenser
Sanitizer wipes

There are items that we need that aren't included on this list, but where we go for dialysis, they supply the masks and other items.  The dialysis supply company supplies all the solutions, tubing, and equipment.

The cart is a little tricky to find.  I received a lot of suggestions, even from the hospital, but I wasn't able to easily find one.  I finally settled on one I found online.  The cart I ordered is - Choice Knocked Down Stainless Steel 2 Shelf Utility Cart - 33 3/4" x 21" x 37"  I won't know for sure if we will really like it or not until it arrives, so I will do an updated post when we actually start using the cart.  

Tomorrow the dialysis nurse is stopping by to make sure our home is ready for storing all the supplies and having the machine in a safe place.  In preparation I'm moving furniture to make room for the cart to easily move around and to make space to store all the supplies.  The large supplies are being stored in the living room and the smaller items are going in our bedroom on a small shelving unit.  Friends of ours were generous to stop by today and drop of these items.

The black crate next to the shelving unit is a file box that holds all the dialysis information files that aren't in the binders.  Behind the files is where I will be storing the binders when I'm not using them.

Remember all centers and hospitals are different, these may not be items that you need.  Ask your provider for their suggestions too.

Tuesday, May 22, 2012

God is Amazing!

Last night I sent out prayer requests to my local friends and through the power of prayer my husband's surgery has been rescheduled for tomorrow.  The hospital said it is going to take a lot to coordinate everyone who needs to be there, doctors, nurses, and staff, but they said they are going to make it happen.

Hopefully one day I can get off this crazy emotional roller coaster ride....  I really don't like roller coasters :-)

Monday, May 21, 2012

Emotional let-down

I want this blog to be a true account of my experiences, it may not always be positive and I hope that is ok.  Right now I need to let it all out.  Tomorrow my husband was suppose to have his surgery.  We just received a call from the transplant team that another patient is getting a transplant and my husband's catheter surgery has been canceled.  We didn't even know there was a chance of it being canceled.

I'm thrilled that someone is getting a transplant.  I'm praying everything goes beautifully for them tomorrow.

My heart, however is crying for us.  Hubby feels horrible.  His creatinine is at 7.2.  Most days he barely eats and some days he is barely able to move.  I don't know when they will be able to reschedule, because this doctor only does surgeries on Tuesdays, so that really limits when it can be rescheduled.  He also only does 3 each Tuesday, so if there are already 3 scheduled for next Tuesday, he won't be able to get an appointment.  I do have a call into the nurse to find out when we can reschedule this surgery.

Tears are streaming down my face and I feel physically sick.  I didn't want my husband to have to go through surgery, but I knew this surgery would lead to him feeling better and now he has to wait.

This also has a great financial effect on us.  For people who think disability benefits are great, let me tell you they aren't.  It isn't even enough to pay for our home.  We are currently selling anything we can in order to try and make some money.  Our hope was that a month after hubby started dialysis (which would have started about 3 weeks after his surgery), he would have felt good enough to return to work.  Pushing the surgery back a week or two or three, really hurts us because it will be that much longer before he can return to work.  I work, but we were surviving on both our incomes and with him being sick I have missed some work.  With the summer upon us I have also lost my income as a teacher.

The only thing that is keeping me going is the faith that God will provide.  God is in control and He will guide us.

The tears will probably continue until I have a new appointment for him because I'm human, but we will be ok because God is always there.

Hidden or forgotten additional costs

When someone we love gets sick, we realize that there will be extra expenses, but sometimes we don't realize how much extra there will be.  When you are on a fixed budget and barely making it, going on disability or having to take time off of work can really hurt financially.

When planning your budget, keep these hidden or forgotten costs in mind.

- Gas to and from appointments.  When hubby first started seeing doctors about his kidneys we had an 8 hour round trip and the gas costs really added up.  Our trip is shorter now, but there is still additional fuel costs that need to be budgeted in.  Sometimes we have 4 or 5 appointments a week, requiring me to full my tank multiple times a week.

- Co-Pays.  Each appointment comes with a co-pay and when you go from visiting a doctor once a month to 4 times a week, the cost can go up by the hundreds.

- New or changing medications.  As your loved one continues to have their health decline, it will undoubtedly mean new medications, dose changes, or additional treatments or herbal supplements, all which cost extra.

- Medical tests.  Just like medication changes, as your loved one continues to have health issues, it may require more medical tests and care.

- Food.  If you are traveling for the appointments, you will end up eating more convenience types of food, which will add cost to your weekly food budget.  A good way to combat this is to plan ahead and pack a cooler.

- Loss of work hours.  Not only may your loved one lose pay because of their health, but the family care provider, you, could also lose pay because of reducing your hours or giving up your job to take care of your loved one.

These hidden or forgotten additional costs can easily add up to thousands of dollars a month, which can be very difficult on a family already struggling.  I haven't come up with a solution, other than to plan ahead, budget where you can, and pray.... I pray a lot.

Sunday, May 20, 2012

Doctor Visit "Worksheet"

Appointments can be overwhelming. It is good to take someone who cares about you with you to help you remember and ask questions. It is sometimes hard not to feel rushed at an appointment, but remember the care provider is there for you and you ask any question you need to and keep asking until you are satisfied.

In your kidney or other health binder, you can just use plain loose leaf paper for your notes, but if it helps, I created a worksheet to print out and take to each appointment in your binder. It contains the basics at the top... date, weight, blood pressure, careprovider's name. Then there is a place for notes and at the bottom are some questions that I try to remember at each visit to ask. There is also space to put questions you want to ask at the appointment.

Did you think of something I forgot to add? Let me know and I will continue to post updated worksheets as I come up with and you provide ways to improve it!

Print the PDF file here.

Types of Dialysis

Shortly after the nephrologist decided it was time to start dialysis, hubby and I went to a class on different types of dialysis. We had gone to the class with the decision that hubby was going to do In-center Hemodialysis. After hearing about the three options...

In-center Hemodialysis
At-home Hemodialysis
Peritoneal Dialysis

we decided to go with Peritoneal Dialysis. Peritoneal Dialysis, also called PD, is done at home every day. Why did we change our minds? One big reason. The port that is placed for hemodialysis can never be removed, even after transplant. Hubby is only 34 years old, I didn't want him to have restrictions on his left arm for the rest of his life because of a port. With PD they will insert a catheter into his abdomen and once he has had a successful transplant, it will be removed. Other advantages we learned about PD, it helps maintain what function your kidneys have left and because it is every day it is more like your natural kidney function. When the weather is bad and you don't want to venture out, PD is an easier option than driving to a center. Even if you lose power, you can still do PD. There are some disadvantages, the long hours (between 8 and 12 hours a day to do PD), the storing of all the supplies, and rearranging your home to allow for the equipment to move around easily. Overall we feel the advantages far outweigh the disadvantages. The biggest advantage? He gets to be home with us and spend time with his children, something he can't do at a center.
Picture courtesy of the Mayo Clinic

*Disclaimer - I am not a doctor, nurse, or any type of healthcare provider. I'm a wife who wants to share her experiences to help others. Everything I share is my opinion and experience, NOT advice or suggestions for you and your loved ones. Speak with your healthcare providers about all decisions and choices you make, so that they are right for you.

Friday, May 18, 2012

Kidney Binder or binder for any chronic illness

I created a "kidney binder" that I carry with me to all of hubby's appointments. I have found it really comes in handy, like today when the Dr didn't have the current blood work and I was able to pull it out of my binder and allow them to copy it. Saved hubby from having to get more blood drawn today and saved us money since getting blood drawn at the hospital costs us more.

What do I keep in the binder?

When I open my binder there is a manilla page divider. It is labeled "notes" and written on it are important phone numbers, like the doctor, the social worker, the dialysis nurse, the insurance company, and all the current medicines my husband is taking. Every appointment we have had, they have asked about medication, so it is really important to have that in an easy to find place.

Next is a bunch of loose leaf paper where I take notes. At every appointment I start a new page and write the date, who we saw, his weight and blood pressure, and almost everything we are told at the visit. It is great to have as a reference.

The next page divider is labeled "test orders". This is where I keep future blood work slips and other medical order slips. Hubby was part of a test study and we were given 4 months of blood work slips on one day, they were stored here and easily found when needed.

The next tab is labeled "information". This is where I keep sheets that we were given with information. One sheet is on a medicine that hubby was going to start taking, another is on PD dialysis (peritoneal dialysis), and any other information sheets we are given will go in that section.

Next is "appointments". This eventually can be cleaned out, but every time hubby has an appointment we are sent a reminder sheet in the mail, I put them all in here so we can reference them if we are unsure about an appointment time. There are lots of appointments, with a lot of different people and departments. It can become very overwhelming, so this does help, even if just a little.

The final section I have labeled is "blood work". Hubby always requests a copy be sent to our home, so we have all the blood work from the last few years. This really comes in handy!

Finally there is a section I haven't labeled yet. It will be labeled, "consent forms". As we are preparing for his surgery, he has been asked to sign a lot of papers. We have started asking for copies of everything he signs. Sadly today we were a little overwhelmed and forgot to get copies. I will call them Monday and ask that they send us copies. This is really important to try and remember, but it is totally understandable when it is forgotten.

Something I haven't done, but now see the need for is to make a checklist for every appointment and include asking for copies on there! When I create my checklist I will share it here in case you would like to print it out and use it.

Check length of appointment

Today we had another appointment for hubby. This time with the anesthesiologist. I brought our younger daughter with us, because I figured this would be a quick, non-tramatizing appointment. I was right about the non-tramatizing, but it was an hour and 1/2 long! Why don't they think to tell you these things when they make the appointment with you?!? The new rule in my house is when making an appointment ask how long we can expect it to be. It really wasn't a huge deal, but I might have done things differently or scheduled a different time (we ended up having to drive home during rush hour), had I known. When caring for a sick relative and still taking care of the rest of your family and life, even little things seem big at the time. It is stressful and it will wear you out. But at the end of the day, if you love them, it is all worth it. I have a migraine, so I'm going to try and rest a little before making dinner.

Thursday, May 17, 2012

How it started

Our journey started in September of 2009. Hubby had been really tired for a few months, so he went to the doctor to see if there was a reason. I got a call first thing in the morning, that woke me up. It was my hubby's doctor... he said "your husband's blood work shows that his kidneys are failing"... it was all a blur. Within days we got the results from his ultrasound. He was diagnosed with Polycystic Kidney Disease, he was 31 years old. Immediately he was referred to a Nephrologist. He was stage 2 when he was first diagnosed. He is now stage 5 at 9% function with a Creatinine of almost 7. Next week is his surgery to have his catheter placed so he can start dialysis. This blog will be my way of sharing my experiences, in hopes that they might help someone else going through a similar situation.