Wednesday, October 26, 2016

When my step daughter went to Hawaii last week she brought back with her a necklace that was a fish hook.
(Looks like this)

 She said that in Hawaii it was supposed to represent the provider.  I felt that described my husband very well.  He is and has always been the provider for our family.  I want to share with you about the man that I call my husband.  My husband was born in Virginia on December 19,1973, even though the social security office thinks he was born in 1974.  He was the 3rd child of 5.  He has 1 older brother, an older sister and 2 younger brothers.  His child was very eventful, he lived to the fullest with his siblings!  His father was serving in the US. Navy and so when he was only 3 months old they made the move from Virginia to sunny San Diego CA!  His family would eventually move to “The city in the Country” or Poway, CA.  This little city was northeast of the city of San Diego but in the same county.  He has shared with me many stories about how it used to be exactly as the motto says, the city was nothing like you would think would be a place in San Diego!  It was the paradise for the people who loved the country living without moving far away from city life!  He was a wrestler in High School and I am told he was a very good one, his name even ended up in the San Diego Hall of Champions!  He eventually graduated high school, got married and had 2 beautiful children, Liliana and Marcus.  After about 19 years, his ex and him decided that they were better as friends and they chose to go their separate ways but stayed amicable for the kids.   2 years later I got hired on at Walmart where he was an assistant manager and we met.  We started off as friends, but slowly it started to change and I fell in love with him.  January of 2012 We became official and January of 2013 we moved in together.  He has always been an independent man, do things himself and didn’t like to ask for help.  When he got diagnosed with kidney disease it was tough.  He had a wife and a daughter that both wanted to take care of him, and that caused some drama at home.  Things at home started to calm down the more used to dialysis we got.  We started to get into a routine and it became easier until we realized that the type of dialysis he chose wasn’t the right fit for him.  We realized that to switch he needed to have a AV Fistula (Arteriovenous Fistula) placed so we made our way to the surgeons’ office and then we scheduled the surgery. The day before the surgery we got a call from the hospital stating that we would be required to pay close to $10,000 to have the surgery done.  We couldn’t afford that type of money so we postponed the surgery until we could figure it out. Finally, we figured out insurance and he went in for his surgery.  We knew that this would be the first of two surgeries.  The second surgery was 6 weeks after the first and everything seemed fine.  I couldn’t make it to the hospital due to me being at my externship for school.  I decided to go pick up Elizabeth for him while on my lunch when I got a call from him saying I should pick up Elizabeth (He didn’t know I was already on my way) because he just started bleeding from his surgery site and he had called 911. I was freaked out, picked up Elizabeth and called my dad, since we lived with them at the time and he was the one with him, to see where they were at.  The paramedics just checked his vitals and said that my dad would be able to drive him.  He made it to the hospital and everything was fine, something just slipped inside the surgery site. His surgeon scheduled us the next day for him to go back in and clean stuff out.  After that fiasco, everything went fine and he could begin training. Training consisted of him going to the dialysis clinic Monday-Friday to learn how to hook himself up successfully on his own.  The first week it was the nurse who hooked him up while explaining what she was doing and slowly but surely through the next 3-4 weeks he learned how to do it without the help of the nurse.  She also taught him troubleshooting as far as alarms on the machine and what to do in times of emergencies.  After the training was up, the nurse visited our home on our first day of dialysis at home and was there to make sure we could do what was learned in the training, successfully at home.   Luckily, even with the placement of his fistula he can pretty much do things on his own, just needs my help with the small stuff such as tape and throwing stuff away.  Even though he is considered “disabled” and I am his Caregiver, even though he hates that term, I am thankful that I have a man that pushes past that and doesn’t fully rely on the help of his wife allowing me to be more of a wife than a caregiver.  

Tuesday, October 25, 2016

Dialysis, The things I missed!

After a few days of exploring other aspects of our lives I would like to return to dialysis.  There was a few things I hadn’t discussed as far as the differences in length of time and some other options as far as getting dialysis done.  My husband is a bigger guy, I wouldn’t describe him as huge, but he is bigger built! When we started PD we were told it would be around 8 hours at night, so we were pretty shocked when 8 hours turned into 10 hours.  The reason it was 10 hours instead of 8 is because he needed longer “Dwell” times.  Dwell times is the length of time the fluid is left in the peritoneum! Peritoneum is described as “The peritoneum /ˌpɛrᵻtəˈniːəm/ is the serous membrane that forms the lining of the abdominal cavity ” I would like to say that I know exactly how long his dwell times were but I don’t remember but I believe it was around 1 hour 30 minutes with about 5-6 exchanges per treatment.  Exchanges start when they fill your space with fluid, dwell time and ends when they drain the fluid.  Weight has a big influence on how long of treatment you are expected to do. This is the same for PD and Hemo-dialysis (whether it is done in-center or at home). 

On my other post I had a comment about the person using the in-center machines at home. That was something I didn’t realize was an option. I would like to thank my viewers for making comments about some of the things that I had missed.  One of the things that I had missed was that there is a nocturnal option as far as Hemo-dialysis in-center and at home.  This is done while the patient is asleep and is a longer treatment time.  The longer the treatment time, the easier it is on the patient as far as recovery and how they feel afterwards and the better the dialysis is. Not everyone can, or even wants to do nocturnal but it is a great option!  Nocturnal is best for the patients that don’t move around a lot while asleep, this is the reason why we feel it isn’t a good option for my husband.  I love that there are so many options as far as dialysis because it allows Kidney failure patients the freedom to choose what best fits their lifestyles, allows them to work if they choose to or if they must and it just makes it easier (not easy, but easier).  

This video really shows how PD is done! In the video you will see a manual exchange.  The machines basically do this over and over again throughout the night.  (Sorry about the poor quality)

Monday, October 24, 2016

Food for a month under $200? Here is how!

I am sorry I haven't posted in a few days!  I have been busy this weekend and I wanted to make sure that this post did it justice!

How do I only spend $200 on food for the whole month?  It truly is about planning, crock pot meals and knowing what is on sale!  I utilize the Flipp app to help me out with knowing what is on sale, and how much I should be spending on food. This also helps if I write down the lowest price so if I find it cheaper at a store I am at I can feel confident that I am getting a good price! I try to stick with the same meat meals.  This month it was chicken and I found chicken breasts (Bone in) for .99 per pound! I first start off with figuring out how many breakfasts, lunches and dinners I must plan for and go from there.  We get paid the 1st of the month, 3rd and 4th Wednesday so there is a nice chunk of time from the 1st of the month to the 3rd Wednesday, so it is important that we plan for those so we don’t run out of food and starve!  I figured that from 10/19/2015-11/16/2016 there was 4 weeks or 28 days!  So, 28 breakfasts, 28 lunches and 28 dinners!  We don’t typically eat breakfast, by the time we get Elizabeth up, to school for breakfast and walked to class and home we usually are on lunch time so I planned for only doing breakfasts on the weekends and lunches on the weekdays so that save me about 20 breakfasts that I needed to worry about but cereal isn’t that expensive if you must do breakfasts in the morning! Or even eggs!  I planned for us to do meal preps for lunches so I found 2 recipes for meal preps and multiplies both by 2 to equal 20 lunches (for the weekdays) and then figured out what we should do for lunches during the weekdays which is typically microwavable stuff so I chose burritos!  I planned for 8 breakfasts and a total of 28 dinners.  I always try to find an easy and quick thing to make just in case we forget a frozen slow cooker meal!  I will usually do about 4 dinners being spaghetti, I did 2 dinners being hamburgers, and then I divided the rest of the dinners needed (22) and so I found 11 slow cooker meals, doubled it and found meals that had little ingredients needed or cheap ingredients needed!

Breakfasts: I chose pancakes, Egg scramble (with kilbasa and onion) and a tator tot egg bake
Lunches: I chose chicken Parmesan with spaghetti noodles and chicken with broccoli and sauce
Dinner: I mainly choose slow cooker meals like I said before.  I chose whole chickens!  Pot Roast (Easy, just get the pot roast, potatoes, onions and carrots and put some chicken or beef broth in)!  Honey Sesame Chicken, Cilantro Lime Chicken, spaghetti, hamburger and pizzas! 

From previous shopping adventures and meal adventures I found that you could make stuff where you shred the chicken, such as soups and such, and have leftovers that you could use for lunch the next day or even for dinner again! That was another way that I would save money is make enough for leftovers and just reheat the next dinner which would mean you are making less dinners per month! 

I like to say that I only cook Dinner once a month!  I create a list; I shop that list and then I put each recipe into a Ziploc freezer bag and put them into the freezer! When I am ready to make that meal, I pull it out the night before and I put it in the slow cooker that morning and it is ready by dinner time!   I have started doing this for our lunches, but I make them every Sunday and then put them in the fridge to just microwave each day!  It works well and it saves on dishes because you just have plates/bowls, silverware, cups and the slow cooker pot! 

The crockpot we use is a pressure cooker, crock pot and rice cooker all in one! It could even be used to cook like on a stovetop!  It’s the Power Pressure Cooker XL (We use the 6 QT which has always been enough for our family of 4!)

We used to use the Ninja slow cooker and so I will be doing another post to compare the 2 and share with you the pros and cons!  :) Check back! I will have that up within the next few days!! 

Friday, October 21, 2016

Modality Part 2 Peritoneal Dialysis

Peritoneal Dialysis (PD) much like home hemo has 2 machines and 2 different types.  The differences in the 2 machines are basically the brand.  Much like Samsung VS I-phone, they both do the same thing just made by different manufacturers and might have some different advantages and disadvantages but they both do the same thing.  When my husband first started with dialysis this was the modality that he chose.  This is also a type of dialysis that you can travel with, but we found it to be a lot of work, but it's really a personal opinion, I am sure there are a lot of people who think the type he does now is a lot of work to travel with.  The way that this type works is that it pumps a certain amount of fluid into your peritoneal space 

 and it basically does the same as hemodialysis but instead of a man-made membrane, it uses your natural membrane that you have in your body.  This type is usually every night, usually about 8 hours at night but for my husband it was 10 hours at night, if you are using the machine.  The 2nd type is not using a machine but manually doing exchanges, where you hang a bag of dialysis fluid, attach it to your catheter and then drain what fluid you have in your body (if you have any, some patients carry fluid around during the day, while some others don’t) and then you fill it back up using the force of gravity. This is done periodically throughout the day, usually taking 30-40 minutes to get hooked up and complete the exchange, usually done 4-5 times throughout the day.  The nice thing about having the ability to do the manual exchanges is if the power goes out you still can do your dialysis.  
The different types of machines are the Fresenius Machine 

 and the Baxter machine 

All 3 modalities work, of course if it didn’t they wouldn’t offer it!  The real choice is which one works best for the patient and their life style! My personal opinion is that PD is great for someone who is smaller because they will have a shorter treatment time in the evening who works during the day.  HHD is great for someone who works during the day and can hook up after work.  In center is hard for some people because you have a select time of day, and select days (usually Mon/Wed/Fri or Tues/Thur/Sat) and you must work your schedule around that.  We went through all 3 modalities before we ended up selecting the one that works best for us and for him!  I hope that this post helps someone out in their decision of which modality to choose from! 

I will also be doing another post about what types of things decide your time on the machines as well as other options you have on top of the type of modality!  This post might come at a different time because I want to start doing posts about other things happening in our lives!  If you have any questions, don’t hesitate to ask in the question section!

Thursday, October 20, 2016

Dialysis Modality Types Part 1 (HemoDialysis)

Dialysis.  When everyone hears that word, the first thing that pops up in their mind is Hemodialysis.  This is where blood is taken out of the body, filtered, and then returned to the body. But did you know that there are 3 different types of modalities? Modalities are the different types of dialysis, well when we are talking about dialysis!  Modality is simply defined as “A particular mode in which something exists or is experienced or expressed”. 

Hemodialysis has 2 types. 
The first, and most commonly thought of is “In center”.  In center is where 3 days a week for about 3-5 hours you are in a dialysis center hooked up to a machine.  This type of modality is great for people who want to be hands off as far as their treatment or they don’t qualify for the other types.  This type is exhausting; many people leave the center just worn out and take long naps afterwards.  The in-center machine looks like this 
The second type of Hemodialysis is “Home Hemo Dialysis (HDD)”. This is the type my husband currently does.  This type is basically just like the “In Center” but it is done at home.  You either have a Catheter or a Fistula. (You need either of these in order to do In-Center as well!)
 A catheter is like this 

  A Fistula basically connected an Artery to a Vein and looks like this 

I could describe how hemodialysis works but this description is much better “The dialyzer, or filter, has two parts, one for your blood and one for a washing fluid called dialysate. A thin membrane separates these two parts. Blood cells, protein and other important things remain in your blood because they are too big to pass through the membrane. Smaller waste products in the blood, such as urea, creatinine, potassium and extra fluid pass through the membrane and are washed away.” 

I pulled that from the National Kidney Foundations website at:                 

Home Hemodialysis has 2 types of machines and they are focused on you as a person rather than how well they dialyze. 

The first one, and the one my husband uses is the Nxstage 

This one is for the patients that enjoy traveling. This machine you can take along with you. 

 The 2nd machine is the Fresenius Baby K which is basically a mini version of the in-center machine and can’t be traveled with because of its size 


                Home Hemodialysis takes about 2-5 hours for about 5 days a week.  You can choose to do 5 days a week with 2 days off, 2 days on/1 day off, or 6 days on/1 day off.  The more days you do, the shorter your treatment is.  My husband does 5 days on/ 2 days off (Not consecutively) at 3 hours 4 minutes.  This works well for us because neither of us work so we can select whatever time of day is best for what is going on that day.  

I will go over the 3rd type of dialysis in a later post. I didn't want to create a huge blog post that was so full of information.  Again, if you have any questions don't hesitate to ask in the comment section!

Wednesday, October 19, 2016

Who is Julie? My journey started on July 10,1989 in Fairfield, CA.  But I won’t go back that far because I might lose you! My motherhood adventure started on August 23,2010 when my beautiful daughter, Elizabeth, was born.  She was a perfect 7lb 13 oz. and 21 inches long.  Have you ever found it odd that they describe height as “long” when a child is born but when you are an adult you are “tall”? When does it switch from “Long” to “tall”? Anyways, back to Elizabeth! Her first year was a rough one, and one that I wish I had skipped but it truly molded me into the woman that I am today.  Elizabeths father and I separated when she was just about 2 months old and eventually fully divorced when she was 18 months old. He lives 8 hours away from me and I lived with my parents!  I began my job at Walmart, where I eventually met my husband.  Ahmed was a breath of fresh air, as cliché as that sounds. We ultimately met through work, but we first started talking when I added him on Facebook as a joke and then I started a game of Words with Friends with him.  This eventually bloomed into a friendship, but I knew it was more than that before he knew!  Our conversations were a daily, 24-hour kind of thing.  I woke up to a “Good Morning Beautiful” every morning, and woke up looking at my phone.  January 2013 is what I consider when we became “official”.  

April 15,2013, I was busy moving into a new apartment with my parents, my phone was dead and so unfortunately I had no clue what that day would ultimately mean for my beautiful daughter.  On April 16 I woke up, plugged in my phone to charge and started making breakfast for my family in the form of sandwiches!  The instant my phone powered back up, it wouldn’t stop ringing as the messages came piling in.  The first thing I remember reading was people saying that they were sorry for my loss, that they would try to make it for the service. Needless to say, I was confused as to what/who they were talking about until I got a text from my sister in law that she needed to speak with me about something. That was when I realized that something bad had happened to David, my daughters father, and I broke down crying.  I learned that David had been in a horrible work accident and that he hadn’t made it.  Elizabeths life would never be the same.  Ahmed, Elizabeth and I made our way up north for his funeral.  After that I made more of an effort to keep her dad’s memory alive.  She would spend her vacations from school up north with her dads’ side of the family.

 On June 6,2014 two families became 1 when Ahmed and I got married.  We married in San Diego, CA at the courthouse. It may not have been big but it was special!  We were lucky enough to have my dad, his mom and dad and his children, Liliana and Marcus (Who became my step children that day) attending.  

In September of 2014 Ahmeds doctor had told him that he needed to see his Nephrologist (Kidney doctor). Ahmed made the appointment and we waited. When his appointment came, we nervously waited for the news from the doctor.  It wasn’t what we were hoping for, he would need to be put on dialysis and we chose PD (Peritoneal Dialysis), I will explain what exactly the differences in the modality types in dialysis in a later post.  December 19 (Ahmeds birthday) we took him to the ER because of swelling in his legs, they kept him all weekend because on Monday they did surgery to put in his catheter for his dialysis. That was when my adventure as a caregiver started!  Now my everyday tasks consist of taking care of a 6-year-old, being the wife to a wonderful husband and also being a caregiver to that wonderful husband.  Does life get tough? Of course!  Ask anyone with kidney disease, they will tell you it isn’t an easy disease to deal with and I will tell you that it isn’t easy for their loved ones either!  Will we make it through? Yes!  I will fight when he doesn’t have any fight left in him, and he will fight when I don’t have any fight left in me!  We help each other out!  I would like to welcome you to my blog!  I wanted to introduce myself, my family and my adventure!  My goal for this blog is to open up the door to show what it is like in the everyday life of a Dialysis warrior and their families!  Do you want to know how to save money on groceries? I have that?! You will get a sneak peek into our everyday lives that allow us both to stay home and focus on his treatment and Elizabeth!