Know your options

Friday night, at my daughter's Christmas concert, I meet someone and we started discussing my husband's dialysis.  This man had a friend who was going in for surgery that Monday so he could do Hemo-dialysis.  We talked for quite a while about peritoneal and how I felt it was a great option.

During our conversation I found out that his friend wasn't even offered peritoneal as an option.  Talking to our dialysis nurse in the past, she has said that many places don't offer or encourage it, I find this very disappointing.

For those just starting to deal with kidney failure, make sure you know your options.  If your hospital doesn't offer peritoneal, find one that does and keep the door open to this option.  Ask if they offer a class on the different options.  Our hospital required that we take a class before Hubby made a final decision.  There are big differences in Peritoneal and Hemo- Dialysis, make sure you know them all and make the best decision for yourself.

I'm not a doctor or a nurse, these are just my thoughts as the wife of a kidney failure patient.

Dr Murray

 Dr. Joseph E. Murray, who performed the world's first successful kidney transplant and won a Nobel Prize for his pioneering work, has died at age 93.

Read more: http://www.nydailynews.com/news/national/nobel-prize-winner-behind-successful-kidney-transplant-dies-93-article-1.1208535#ixzz2E2pJGks1

It's becoming routine

I honestly wasn't sure it would ever happen, but setting up, cleaning up, and having hubby do dialysis is becoming more routine.  I can now do it all without much thought and we have now found ways to turn the time into a positive time.

Setting up the machine early has definitely made things easier.  It gives me freedom to do it when I have time and then it is always ready when it's hook up time.  After hooking Hubby up and cleaning his exit site (which has to be done every day until he receives a transplant), I climb into bed and we snuggle and talk until he is ready to sleep.  Some of our best conversations happen during these times.  Our marriage grows stronger and stronger each day, which I believe has really helped us get through all of this.

It is still emotional.  I'm not sure there will ever be a time that it isn't.  I cry less, but I still have days when it hits me.  When I realize that Hubby needs a new kidney, that his health will continue to decline, even with dialysis until he gets his transplant.  And even then, he will be on meds his entire life and continue to see doctors regularly, because all kidney transplants experience rejection.

During our transplant class we learned that there are different types of organ rejection. 

Hyperacute - this is the most severe form of reject and happens within minutes or hours after the transplant surgery.  This is a very rare type of rejection.

Acute - this is most common.  It takes a while to happen, but most often happens during the first 6 months after transplant.  This type of rejection can be treated with medication.

Chronic - This can happen at any time and we were told in class that this eventually happens to most transplant patients.  Kidneys, depending on the source (living donor or deceased), only last a certain number of years after transplant.  They last longest from a living donor. 

As always, I'm not a doctor or a nurse.  The information I share is from personal experience and from what we learn from doctors and nurses as we continue on this journey. 

Best intentions

I started this blog with the best intentions, but I didn't realize how busy I would be.  I'm sorry my post are sporadic.

Continuing with what we learned at the transplant class.  Blood type matters and can make a huge difference in how long it takes to get a transplant.

AB patients can get a kidney from a AB, A, B, or O donor (they have the shortest wait)
A from A, AB, or O donor
B from B, AB, or O donor
O from just O donors (they wait the longest)

There are other markers that they match, the patient who is in the top few on the list and gets closest to all the markers has first option at the kidney. 

The wait varies from hospital to hospital.  You can be placed on the list for more than one hospital, which does increase your chances.  At the hospital we are hoping to work with, the wait for an O patient is 8 years.  We were told that AB patients can receive one in just a few weeks.

If you have friends or family that want to donor, but their blood type isn't compatible to you, there is an option of a group swap, where they match several donors, with several patients, so don't give up hope if they have a different blood type!

Making set up a little easier

I wish I could say that we have adjusted to the daily routine of hooking Hubby up to the dialysis machine, but we haven't.  Every night there is an emotional weight that seems to come with the hook up.  However, we did find out something that has made some days a little easier.

Nights are rushed.  Between children, dinner, activities, and hooking Hubby up, I feel busy most nights.  Some nights are harder than others to fit it all in.  An email from Hubby's dialysis nurse, offered a thought.

We were told that we can prep the machine at any time and simply hook Hubby up when he is ready.  Some days I don't get a chance to do all the prep work earlier, but today I was able to make the time to clean up the machine, empty and clean the bucket, and get the bags attached and ready.  This will make my night easier.  After picking up our teenager for school, it is off for a doctor's appointment, then home to make dinner, then instead of rushing in to clean up everything and prep the machine, I will simply have to go in with Hubby when he is ready, clean his exit site and hook him up.

What happens if the power goes out or the machine becomes unplugged?  It's ok, just click the green go button until the machine is ready to go again.

Ask your dialysis nurse and then give it a try!  It may help make hook up time a little easier.  Just make sure you save your mask so you don't have to use a new one for the hook up (you can see in the picture, I leave mine on the machine).

Neat Phosphorus tool

As you know, with kidney failure you need to watch your phosphorus intake.  Each patient's amount will vary, so ask your doctor how much you can have daily.  Then use this website to find out how much phosphorus is in over 7000 foods!

So many things....

I'm sorry I haven't posted.  I have learned so many things over the past several weeks, but I have been trying to decide how to present them to all of you.  We went to a transplant class and found it to be a very emotional experience.  I think I will share everything we learned in small pieces.

Did you know that you can ask to attend a transplant overview "class" even if you aren't ready for a transplant?  We are glad we went even though it was very overwhelming.  Hubby is ready for a transplant, but doesn't qualify at this time, because of his weight.  Every transplant program has different guidelines for weight, health, and other criteria.

Did you know you can get on the transplant list at more than one hospital?  We learned that it is good to check out other hospitals and get yourself on a few lists.  It is a complex system for deciding who can get a kidney.  We also found out that this is a very heartbreaking process.  When a kidney is available the top people are called, but only one of those people actually get the kidney.  But that means the others called still have to be ready just in case it is them.  One man, at the hospital we took the class at, has been called and ready to go 9 times... he is still waiting for his kidney.

I realize this post is short, but emotionally I think that is enough for one day.  I don't want my posts to be negative or emotionally hard to read, but I want to share what we are learning as we go through this process.  I hope you have support to get through this hard time.

Breakfast Burrito - Low Phosphorous - PD friendly!

I'm trying to vary what my husband takes to work for his lunch, so today I made him some Breakfast Burritos.

Breakfast Burritos - PD Friendly

1 pound ground pork
1/4 teaspoon cayenne pepper
1 teaspoon ground sage
2 tablespoons of water

Mix those 4 ingredients together and refrigerate for a few hours or overnight for the seasons to flavor the pork.

6 palm sized potatoes
1 tablespoon of margarine
12 eggs

Once the pork has had time in the refrigerator, brown in a large frying pan.  After browning, drain by putting the pork on paper towels that are on a plate.

Take the 6 potatoes and cut them into fourths.  Chop them in a good processor until they are the desired size.  In the same frying pan that you used for the pork, brown shredded potatoes in margarine.

Once the potatoes are brown, add in the pork.  Scramble the eggs using a fork and then add to the frying pan.  Cook until the eggs are completely cooked, mixing most of the time to really blend everything together.

Put a spoonful inside a burrito soft shell and roll, wrap, and freeze.  It's ok if you want to eat them now too :)  The night before you want to eat them, put them in the fridge and then reheat at meal time.

You can also add any fresh veggies... tomatoes, peppers, onions... whatever you like to make it tastier!  Just remember NO cheese, unless your dietitian has said it is ok.

Supplement shakes

Hubby has been struggling with eating.  He is so tired and beat when he gets home from work, that he doesn't work to eat.  I spoke with his renal dietitian today.  She said there is only one supplemental shake that is recommended for dialysis patients and that is Nepro.  Nepro is a high protein, low phosphorus and low potassium shake.  It is also expensive.  Only one store carries them locally and that is Rite Aid.  For a box of 4 8oz shakes it is $16.

I gave the company a call and through their very friendly customer service found that they would send us some coupons for the shakes.  I also found out that for dialysis patients they offer a special price on a case of 24.  They said that the dialysis unit would need to fill out a form for the better price, but I definitely think it is worth the extra work.  Just make sure you like the shakes before purchasing a case.

What to do with the boxes?

With everything going on with dialysis, appointments, medicine changes, and life in general, what to do with all the dialysis boxes really is a small issue, but they do tend to pile up.  We have an empty box every single day.  That is 30 boxes a month and 365 a year!

The boxes are sturdy and I hate to just recycle them, so I tried giving some away.  A few found homes, but I still end up with tons of boxes piling up.  Tonight I spent some time searching the internet for some creative ideas for using all those boxes!  Some will still end up in the recycling bin, but maybe an idea or two will appeal to you and when life slows down a little you can work on a creative project.

Find 40+ projects pinned on my Pinterest page!

2 weeks of work

Hubby started back at work 2 weeks ago.  The first week he worked 4 days, the 5th day he had an appointment.  This week he worked 3 days, he wasn't feeling well one day and the other he had an appointment.

He did well considering.  He did come home tired, but I'm so proud of him for going.  Speaking with a nephrologist on the phone (not his), he said the most successful kidney failure patients are those that go back to work.  This was great to hear and know.  I'm not sure it is possible for dialysis patients to ever function as well as they did before kidney failure, but it is possible for them to have a good productive life.

I can't say life is "normal", because there are still countless appointments, blood tests, pills, daily dialysis, and he does suffer from fatigue, but he is alive, he is trying, and today is a good day!

*Do you have a positive story about having a good life after starting dialysis?  Would you like to share your story?  Send me an email using the email button on the right column.  I would love to be able to share some positive stories.  The entire story doesn't have to be positive, because as we know dialysis comes with it's own set of challenges, disappointments, and failures.... but if the main theme or the ending of your story is positive... I want to share it!

It isn't an energy star

Today I got our first electric bill after using a full month of dialysis.  It was high, much higher than it normally would be this time of year.  Using the machine for 10 hours a night, every night does end up using quite a bit of electricity, especially since this isn't an energy star appliance.

I still wouldn't have it any other way.  Peritoneal dialysis is what is best for Hubby, but it is going to require quite a bit of budget changes.  If you are on a fixed income and can't handle any increases, this is something to consider.

I did call the electric company to see if there is any help at all or special programs that we can apply for, but sadly I was told no.

Not the news we wanted

Today we got a call from the hospital where Hubby "applied" to be part of the transplant program.   Our current hospital was willing and ready to start the process of getting Hubby on the transplant list (he already met with the transplant doctor), but our insurance wouldn't cover a transplant there so we had to move on to hospital C.  Today hospital C told Hubby that they won't even start the process until he is at the weight he needs to be for transplant.  He has worked hard and lost a lot of weight, Hospital B saw the progress he was making and was pleased enough to start the process.  Sadly Hospital C won't do anything, except allow him to go to the informational class, until he loses the weight.

I'm devastated.  Losing weight is difficult for the average person, but add to that not feeling well, doing dialysis, and trying to work full time.  I know he can do it, but how long will it take?  How many years will he have to continue dialysis without even the hope of a transplant?  I am thankful he has dialysis to keep him alive, but transplant has always been the goal.

I guess it will be a while before I'm able to share the transplant process with you.  I do hope you will take something away from this though.... if you are over weight, lose the weight.  Trust me, I know how hard it is, I'm fat and I hate it.... but we never know when we will need life saving medical care and it is devastating to think that weight can stop our lives from being saved.

No one said this would be easy

I don't think I believed that everything would be ok, once Hubby started dialysis, but I guess I hoped.  Each month he goes back to the hospital to meet with his dialysis team consisting of a nutritionist, dialysis nurse, doctor, social worker, and blood taker.

The doctor wasn't pleased with how his exit site is healing, but the nurse felt it was looking pretty good.  Since I clean it and see it everyday, I have seen the improvement since the surgery.  I think Hubby is just a slow healer.  Hubby is also still experiencing some issues he had before dialysis and that dialysis should have helped with, the doctor is waiting for the blood work to decide what changes will be made.

This morning we got an email from the nurse about the blood work, it isn't good news.  I'm not sure why I thought it would be smooth sailing after starting dialysis.  It is an every day challenge.  Every day there seems to be a new "thing" to worry about, think about, consider.  Don't get me wrong, dialysis is still worth it.  I have my husband alive and that makes all the rest worth it!

I mailed the packet to the new hospital on Tuesday, they should have received it on Wednesday, so now we are just waiting to hear back.

Something that I have started doing to make set up easier, that I would like to share with you.... Hubby uses two different bags a night for his dialysis.  They are each a different strength, I have started opening the boxes and putting the two bags together that he will need that night and stacking them in our bedroom.  That way I just grab the one box and get to work.  It sounds simple, but it has actually made quite a difference in setting him up each night.  Over time the prescription of the strength will change, but for now this simple step has really helped.

Hubby's first day back at work

He is physically exhausted, but he did make it through the day.  He is also tired and doesn't want to eat much.  He will only be working 4 days this week because of his regular monthly appointment with his dialysis team.  Many dialysis patients aren't able to return to work, so we are thankful that he made it through today.  I will let you know how he does after a week of working.  There is hope that you or your loved one can work, even on dialysis!

After a phone call to the hospital today, the packet is now ready to mail off to the hospital!  Day 5 of working towards getting on the transplant list.

Day 3 of getting Hubby on the transplant list

Today in the mail, his packet arrived.  It contains three forms to fill out....

New Transplant Candidate Information sheet
Kidney Acquisition Registration Form
Insurance Authorization and Assignment Form

They are all pretty normal information to be requested... family history, your medical history, insurance information and so on.

I'm hoping they will be filled out and mailed by Monday.  I'm not sure of the timeline to get an appointment after they get the packet, but I will let you know how it goes.  Every place will be different, but hopefully this will give you a little bit of an idea of what to expect.

Reclaim a piece of you

If you are the care provider, you are probably feeling all sorts of emotions.  It isn't easy physically, mentally, or emotionally, but we do it because we love them.  Between Hubby not working, the surgeries, appointments, classes, medical bills, and the rest of my life that continued on despite the fact I was tired and wanted it to stand still for just a little bit, I lost myself.  I was so consumed with everything that I needed to do, had to do, that I did nothing for me, nothing to ensure that I would keep on going, nothing that gave me a moment to be just me.

It does sound selfish, doesn't it?  Here someone we love is suffering and I'm making a post about me.  Recently I have realized that I am important and I need some time each day.  You are important, your loved ones need you to be ok, so you need to take some time too.  For each person that time will vary in length and in what you do.  I recently started cross stitching again.  It is something so simple, something I did for years and years.  Something I started doing for Hubby (that's a story for another day) and it is something that gives me time to reflect, pray, and feel at peace.

Since I started cross stitching again, I feel like I'm slowly coming back, that I'm not just a shell of a person that is on autopilot.  Find the time to do something you enjoy, something that will take you back to a time when you felt at peace.  It can be going for a walk, reading, praying, writing, painting.... anything.... give yourself time and know that you aren't being selfish.... you are taking care of yourself so you can be the best care provider possible for the one you love.

You are important too, never forget that!

"May Cottage" by Country Cottage Needleworks

First step

Today Hubby took the first step in getting on the transplant list.  He called and referred himself for a Kidney Transplant at a hospital that will take our insurance.  Two hospitals, one when he was first diagnosed and the one where he currently receives monthly care for dialysis, were unable to start the process of putting him on the transplant list because our insurance won't cover a transplant there.

Hubby had to leave a message, but within an hour the person in charge called back.  She asked for basic information... address, reason for kidney failure, insurance, and stuff like that.  She said the first step was for her to complete this information by talking to his nephrologist.  Next she would mail him a packet to fill out and send back, then finally she would call with an appointment after reviewing the packet.

We will call this Day 1 of getting on the Kidney Transplant list.

They may not tell you

They may not tell you that the machine may alarm.... every night.... forever.  When hubby first started peritoneal dialysis the machine alarmed and alarmed and alarmed.  After several appointments and a scan of his peritoneal catheter using dye, they decided that the slow drains were due to the knotting of the catheter in his lower peritoneal cavity.  After the procedure to correct that issue, we thought we were good.  Sadly we weren't.  It did stop the leaking, but the alarming and slow drains continued.  We tried adding heparin to the bags and at times it seemed to help, but there was still alarming.  Hubby has changed positions and tried other suggestions, but it still alarms.  Some nights we are blessed and it only alarms once, but other nights it seems to be constantly going off.

It wouldn't change our decision to do peritoneal dialysis, but it is something I think people should know.  The machine will alarm... it happens... you aren't alone, but we are only one family going through this, so maybe most don't have alarming... that would be interesting to know.

Recently hubby mentioned the alarming to his dialysis nurse and she pretty basically said, it just might be the way it is for him.  I can't complain, the machine keeps him alive!

Even though alarming is normal for us, please let your nurse or doctor know if you have issues with alarming, it could be something more serious that needs their attention!

Eating options - Breakfast Sandwich

Being at stage 5 kidney failure and on dialysis does limit your food choices.  Right now Hubby has to really limit phosphorus because even with a phosphorus binder, his levels are high.  High phosphorus levels are dangerous and can lead to serious health problems, so it is important to listen to your dietitian and follow their limits.  This is hard, I know.  Hubby loves peanut butter sandwiches, which he now can no longer have.  It is also very important for people on peritoneal dialysis to get enough protein.  Since nuts, seeds, and diary are now no-nos, protein is best found in meats and eggs.

Today I made my husband 20 breakfast sandwiches and they are easy to make and freeze for later.

Using a muffin or cupcake tin (I prefer the muffin tin), spray it with cooking spray, put 1 egg in each spot.  Hubby likes his scrambled, so I scrambled them before putting them in.  Bake at 350 for about 20 minutes.

Using the Breakfast Sausage recipe from "Cooking with David", I made 2 "logs" that turned into 20 sausage patties.  I then toasted english muffins and made a sandwich.  Enjoy fresh or freeze for later meals.

Tears and Adjustment

Slowly we are adjusting to the new routine, the new life.  Some things will change again when my husband attempts to go back to work.  His life will literally be work, dialysis, work, dialysis, work, dialysis.

During the day I'm ok, life goes on as normally as possible, but at night when the house is quiet and it is just me, I cry.  I'm not sure anyone can really understand how hard it is to watch someone you love suffer and struggle with a life threatening illness, unless they have been there themselves.  I don't sleep anymore, I can't.  My mind doesn't shut off.

People believe because my husband is on dialysis that everything will be ok now.  Sadly that may not be true.  1 out of 4 people die on dialysis.  1 person dies every 2 hours waiting for a transplant.  While dialysis is a wonderful invention, it isn't a cure.  It is simply a way to prolong a kidney failure patient's life until a new kidney can be found.

I am filled with hope about our future, but that doesn't stop the tears.  It is a constant emotional up and down.  Every morning when I wake up I check on Hubby, I ask him how he is feeling, I worry about the headaches he suffers every day.  If he has a pain, I get scared it is an infection.  If he is extra tired, I worry that the dialysis isn't doing it's job.  The worries don't go away... I can forget for a while, but the thoughts and worries do return.

It's lonely.  I have no one to talk to that has been or is in my shoes.  I cry alone.  Even though there are a lot of kidney failure patients and families that take care of them, it isn't something anyone around me has really been through.  When I asked at the hospital about a support group, I was told that there aren't any.  They said that patients spend so much time dealing with their failing health that they don't want to sit around and talk about it.

My family signed up for the National Kidney Foundation walk a few years ago.  Sadly my younger daughter and I came down with a really bad chest infection, so we had to stay home.  My husband and older daughter did the walk.  Hubby doesn't take a lot of pictures.  When he arrived home he showed me what he took.  There was one of him and my daughter, one of my daughter, and one of a sign.  That is how much of an impact it had on my husband, enough to take a picture.

I received an email from our local Kidney Foundation the other day and a few sentences really hit hard...

"PKD is one of the most common, genetic life-threatening diseases affecting more than 600,000 Americans and 12.5 Million people worldwide.  PKD affects more people than cystic fibrosis, muscular dystrophy, down syndrome, hemophilia, and sickle cell anemia COMBINED!  However, it is a widely unknown condition and the least funded of all of those diseases.

Polycystic is a condition where "many cysts" form on each kidney, ultimately causing renal failure.  There is no treatment and no cure, with dialysis and transplant as the only options to prolong life.  If a parent has the disease, there is a fifty percent change it will be passed on to their children.  With no cure and no known treatment, this is why we ask for your help to change that."

Honey Fest - Fund Raiser for PKD

The part that was hardest to read is the part about children.  Knowing that this is a possibility breaks my heart.  It is hard enough to watch my husband struggle, I can't watch my children go through this.  So I pray and pray hard that God will spare our younger daughter.  Hubby adopted our older daughter, so she will be ok.

My least favorite part

In our jobs, our chores, our lives as parents, we all have our least favorite part.  It doesn't mean we hate it or we won't do it, it just means on our top 100 favorite list of things we do, it falls just after stubbing our toe in the wall.

I'm sure if I was the one on dialysis, my least favorite part might be actually having to do dialysis.  I, however, am just the care provider of my Hubby who is actually on dialysis.  One of my "duties" is to empty and clean the discharge bucket.  When doing peritoneal dialysis there are two options for the discharge (the dialysis solution after it has done it's job and all the extra water and toxins it pulls out of the patient).  One option is to run the discharge line from the machine to a toilet or bathtub nearby or to use a 5 gallon bucket to collect it.

Since we have 1 bathroom and children and pets going through the house at all hours, we went with the bucket option.  I purchased a 5 gallon bucket with lid at Home Depot.  Then Hubby cut a notch in it for the tube to fit through.

After Hubby dialyses over night, it is my job to carry the bucket into the bathroom and dump it.  The weight varies slightly from night to night, but it normally weighs in at about 30 pounds.  Hubby can only lift 10 (doctor's orders).  After I dump the bucket, I use a mixture of bleach and water to clean it completely out.  Then it is ready to use again.  

I know it sounds simple, but for some reason this is my least favorite job.  

Exit Site Healing

My Hubby has proven to be a slow healer.  We were told it takes about 8 weeks to heal from the surgery to insert the peritoneal catheter, but early on, we were told the actual exit site can heal much quicker.  It's been about 7 weeks since my Hubby's surgery and his exit site is still healing.

One thing that I have recently discovered that seems to be helping the healing involves two simple things.  A 2 by 2 (which is a gauze pad that goes around the catheter to protect the catheter exit site) and sterile water with salt (the water was provided by the hospital and I just added regular table salt).

Simply soak the 2 by 2 in the salt water and place it around the exit site and allow to sit there for 10 minutes or so once a day.  His site looks better and better each time we do this.  Remember I'm not a medical professional, so before doing anything different, please talk to your dialysis nurse or doctor.

*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 PKD

Cooking for David

I will write some additional posts about the diet for patients on dialysis, but in the meantime, please check out the giveaway of "Cooking for David" a dialysis cookbook on my other blog.  My Simple Walk.

Setting up Boundaries

Boundaries doesn't seem like the right word, but I lack a better word to use in it's place.

Peritoneal Dialysis requires setting up, the actual dialysis time and then cleaning up.  Each evening I do the set up while Hubby does his stats.  He takes his blood pressure, temperature and weight.  The time it takes me to set up varies.  It can change if I have to add medicine to the bags, or if I forgot to empty and clean out the discharge bucket earlier that day, or if I happen to touch something I shouldn't have and need to wash up again, or maybe it is because I left a dialysis bag in the other room.  I allow myself 45 minutes to complete the set up, but if everything is ready to go and I don't need to add medications, it only takes me about 25 minutes.  I also clean and redress Hubby's exit site during that time.

Right now my husband is still unable to work, so we have a larger window to set up.  He likes to be "hooked up" between 7 and 9 at night.  Once I get started with the set up, I don't want to be interrupted by someone knocking at the door or calling on the phone.  We have set up "boundaries" with our friends and family so that I can set Hubby up without interruption.  It is important to not be interrupted because that is when mistakes can happen and mistakes can lead to infection or even bigger problems.  We didn't make a grand announcement or make it into a big deal, but when we speak with family or friends, we let them know that stopping by after 7 isn't good for us because of Hubby's dialysis.  We also let them know that they can call after 7, but I won't be able to answer and probably won't be able to return the call until the next day.  Of course things happen and people need to stop by or they urgently need to talk to you, but that should be kept to a minimum and only for emergencies.

Setting up boundaries early on will make it easier on you and will allow family and friends time to adjust and remember that you need this time for your health or the health of a loved one.

Remember, no matter how your family and friends take the new limits you have put in place, your health or the health of your loved one is most important.  In time everyone will adjust.

Where to go from here?

The next step is to get on the transplant list.  Many people assume that once you need an organ that you automatically get on the list.  I honestly don't know about other organs, but that isn't the case with kidneys.  There is a 6 month process to get on the list, the time line might vary from hospital to hospital, but everywhere has a process.  My husband called last week to start the process at the hospital we have been working with, but sadly our insurance won't cover the transplant there.

I was angry.

We have been working with this hospital since the last hospital said they could no longer see hubby because of our insurance.  Hubby called the insurance company and we were given a list of hospitals where he can have a transplant, none that appeal to us.  We choose our original hospital because of the high success rate with kidney transplants.  Our current choices aren't even on the list of best hospitals for kidney transplants.

We feel let down.

It feels like having to start again to go to a new hospital.  He is already so well known at the hospital we go to, that when Hubby walks in they say hi using his name.  I don't want him to be a number or just another patient at a new place.  It has taken time to adjust to having to drive further and go to a new hospital, but Hubby plans to call tomorrow and start the process with the hospital we selected from the list.

I will let you know how it goes.

Small change

After hubby's initial surgery, we went to a check up a week later with the dialysis nurse.  She took off the dressing and taught me how to take care of it and redress it.  She gave us some supplies including these little plastic cups that I was to use for the washing solution and then wash and use again.  Sounds simple, but it became something I would forget to wash and then have to stop what I was doing and run out of the bedroom and wash it.

Simple solution - disposable dixie cups.  Yes, I realize that there is an added expense by using something like dixie cups, but when there is so much to do with the exit site, the dialysis set up, and life in general, I found this little change a great relief.  We purchased the store brand which was much cheaper, we use one a night and in the trash it goes.

Sorry it has been so long!

I can't believe how long it has been since I last posted, I'm sorry about that.  Today I want to share with you something we were never told could happen.  Last week my husband had another procedure done at the hospital.  Several days before the procedure my husband's exit site started leaking.  We tried adding medication to the bags, reducing the amount of fluid, and stopping the last fill, but nothing seemed to help.  We made a trip to the hospital where they injected fluid into the peritoneal catheter and using x-ray determined that the catheter had coiled up and landed in a spot that was causing the leak.

Once the problem was determined, the procedure was scheduled to uncoil the catheter.  It wasn't as long as the original surgery to put the catheter in, but it was still a long day.  The procedure was a success and the leaking did stop.  The doctor also thought this procedure would help with the slow draining, but it didn't.  We still continue to have alarming through out the night because of slow draining.

Our machine came with a book that offers several suggestions for slow drains.  We tried all of them, we tried the nurse's suggestions and the doctor's suggestions too.  Nothing helped.  It continues to be an issue and it does cause stress.  It is hard not getting a full night's sleep.

Today Hubby had his monthly appointment at the dialysis center.  He meets with the dialysis nurse, the doctor, the nutritionalist, and social worker.  He also stopped by the lab for blood work and the pharmacy for medication.  They discussed the drain problem.  We are trying the medication in the bags for a week and then if the slow drain continues they may have to do a surgery to stitch the catheter in place.  Hubby doesn't want to do this at all, so we are praying the medication does the trick!

*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 PKD.

5 Days Worth

A few days into dialysis I decided to start saving the caps.  These go on the tubes that go from the machine to the bags and to Hubby.  There is only one cap I don't save and that is because it has betadine in it, which is messy.  Otherwise, this is 5 days worth of caps.

Things I have learned after a week of dialysis

It has been just over a week now that hubby has been doing peritoneal dialysis and here are some of the things I have learned.

No matter how prepared we felt after the classes, nothing could have prepared us for the constant alarming of the machine, the emotions, the fatigue, and the steady work of cleaning, preparing, setting up, and putting away.

A 12 oz bottle of antibacterial hand sanitizer only lasts a week, this is also true of a bottle of bleach, three rolls of paper towels, and what I was told was a month supply of cotton swabs.

There is, mostly definitely, more trash.  In one week, we filled an extra large construction trash bag which cost us extra each week to put on the curb.

I can function with less than 3 hours of sleep that was interrupted by an alarming machine, but it isn't pretty.

We followed all the directions in the book, all the directions from the dialysis nurse, and did everything possible and hubby still drains slowly for at least one drain out of 5 each night, which causes the machine to alarm.

When the doctor and nurse say not to lift more than a gallon of milk, they mean it.

Even when you do everything right, things can still go wrong.  After three weeks of healing, hubby's catheter site has decided to start leaking.  If it doesn't stop in 5 weeks, it will be back to the surgeon.

Even with it's headaches, peritoneal dialysis is worth it, because every night my hubby is sleeping by my side, even though his feet are in my face :-)  We figured out he drains better sleeping that direction.

Unscheduled trips to see the dialysis nurse happen.

It has been a long week, but Hubby is alive and in time will feel better, so it is all worth it!

Bringing home a "baby"

Please forgive me for not posting much recently.  The only way I can describe bringing home the dialysis machine is like bringing home a new baby.  We were at the hospital for 3 days of peritoneal dialysis classes, it wasn't exactly like a birth, but it was long and tiring.  We took a nap every day after the classes. Everyday we came home with supplies.  Lots of them.  You can see my previous post for the supplies we brought home last Tuesday.  Here are the supplies from Wednesday...

And on Thursday we brought home the machine and all the instruction books.  

Just like having a new baby the house is full of extra "stuff", there are visitors, and we are tired.  The first full night of dialysis was Thursday.  Hubby is attached to the machine for 10 hours.  We haven't slept for more than 30 minutes at a time since before the machine came home.... not unlike having a new baby.  That first night I can't even remember how many times the machine alarmed.  The alarm we seem to be getting every single night is "low drain".  Hubby talked to the dialysis nurse yesterday and we are trying something and hoping it works out tonight.  

Hubby is losing sleep just waiting for the alarm to sound, I'm losing sleep because hubby is awake and the alarm is sounding.  I'm sure we will adjust, but for now we are on auto-pilot, just trying to get through each day.

These are just my very humble suggestions.  If you are doing peritoneal dialysis or assisting, plan to stay home for at least the first week.  It requires a lot of adjusting and it will help if you don't have to run all over town.  Figure out what to do with all the empty boxes and the extra trash.  At first I thought having these sturdy boxes would be great, but we are emptying them faster than I know what to do with them. Each box only holds 2 bags and hubby uses 2 bags a night, so every 2 days I have 2 empty boxes.  That means in 30 days, I will have 30 empty boxes!  If you don't put your limit on the curb each week than you will be ok, but I'm guessing we produce an extra can a week with all the trash dialysis is creating.  And yes, it is legal and acceptable to put what we are putting into the trash.  This concerned me too, but that is what the trash company and the hospital say.

*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 PKD.

Class and more supplies

Today was a day full of classes.  Hubby was hooked up to a gravity dialysis bag and had 1.5 liters of solution put into his peritoneal cavity and it was removed by gravity at the end of the day.  While the solution was doing it's job, we learned how to use the machine, how peritoneal dialysis works, how to inject the bags with medicine, and proper technique to create a sterile environment.

We also met with the social worker, which never seems to end with answers that are positive, but we have the facts and that is important to move forward.

At the end of the day we left with 2 boxes of additional supplies, plus a scale, thermometer, and blood pressure machine.

Why are these supplies important?  Dialysis isn't an exact science, it takes time to figure out the amount of solution and the %.  Before starting each dialysis treatment, the patient will weigh themselves, take their blood pressure, and their temp.  After the dialysis treatment they will do it all again and record all the numbers.  This will help your dialysis team to make judgements that are best for your health. 

*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.

Dialysis catheter band / belt

After the catheter site has healed, an extension will be added to make it longer.  Tape will no longer easily hold the catheter in place so it doesn't tug or pull, so a catheter band or belt is needed.  It can be made from a stretchy material like knit and it holds the catheter and wraps around the body so a person can remain active.

There are a few companies that sell them, but thankfully I'm blessed with the ability to design and make them myself.  Tonight I made two of them.  One for hubby and one for a little boy that is also receiving peritoneal dialysis.  The boy is only 2 and quite active I'm told, so his parents have struggled to find a band that works well.  I'm hoping to have solved that problem, if not hopefully they can give me an idea of how this band works and doesn't work, so I can try again.

Unfortunately the fabric store only had one material that is appropriate for a man and a boy and this is it... not exactly what I would have picked for a 2 year old boy.  I'm hoping his parents still like it.

Ok I decided to make the little boy a second one out of a different type of material.  Here it is.

Healing time

It has been 11 days since Hubby's dialysis catheter surgery.  He is back to where he was before the surgery.  I can't say that he is "normal" because for the last several month he has felt pretty sick every single day and I don't consider that "normal", even though it is his normal.  I'm glad the effects of surgery are over though.  I have been cleaning the exit site and changing the dressings everyday since Wednesday.  Yesterday I wasn't thrilled with how the exit site looked and even called the nurse, but she was gone for the day.  I told him if it didn't look better today I was taking him to the ER.  Thankfully it looked better.

Everyone heals at a different rate.  Hubby seems to be a slower healer.  There is no time line for recovery.  One person may heal in 2 weeks others might take 4.  Healing the dialysis catheter exit site is very important, because without proper healing a patient won't be able to start dialysis.  So take your time, protect the site, and don't rush the healing.

Sadly I wasn't able to locate a color image of this chart, but for now here is a black and white chart to help you determine the health of your exit site.  When I locate a color chart, I will share that link 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.

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.

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!

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.

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.

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!

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!).

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.

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
Bleach

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.

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 :-)

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.

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.

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.