Thursday, June 28, 2012

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.

Sunday, June 17, 2012

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!

Tuesday, June 12, 2012

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.

Tuesday, June 5, 2012

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.

Monday, June 4, 2012

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.

Saturday, June 2, 2012

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.