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.