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.