Home Hemodialysis Red alarm number 10 nightmare

 

At the end of January this year we made the decision to do Joes dialysis at home.  He was not doing that well at the clinic.  Complications from only dialyzing three days a week were leaving too many toxins in his blood stream and making it difficult to balance his seizure medications .  The rebound high blood pressures sent us to the ER and a few days in the ICU to straighten out.  I learned a lot about myself , my husband and both of my boys.   I think even the dogs had to adjust.  We are roughly a five and a half months in and still trying to adjust to our new normal. Our morning conversations are not about vacations, pending projects or what's for dinner.  Our morning conversation are mostly about  dialysis.  We are trying to figure out where we come in.  How do we balance this new normal? How do we find home again, What goes undone, what interests do not matter any more?  How long will this instapot last and how much more weight am I gaining back?  

I hear parents say they are giving things up for their children. They Sacrificed!  I have give nothing up nor have I sacrificed myself to being a parent.   I am a mother.  I have less time, I have less freedom, I get less sleep and  have more medical knowledge then I ever wanted.   I have been a mother for almost 30  years and still learning.  This part of the journey has been exceptionally hard.  There were a lot of hurdles to jump to become proficient at Hemo Home Dialysis and we are still jumping.  Working this into an already busy schedule has not been easy.  This part of the journey has definitely defined what is really important on the list of things to do.  I mean seriously, one morning I was getting in Joe's first BP for the day , at 7:00, and could not remember when was the last time I brushed my teeth or my hair or bathed.? When was  the last time I got an PT/INR?  When was the last time I actually relaxed?  If you are a hands on primary care giver then you understand the demands of meeting the needs of a individual that finds daily selfcare challenging.  If you are a primary caregiver that is also the medical support then you are really TIRED.  I am proficient at doing blood draws off a central line (permacath)  located in the subclavian vein in left chest cavity on my son.  My husband and I both are trained to do this as well as use this central line to perform dialysis on my son 5 days a week.  I am underqualified but have been called to do this.  

A red alarm number 10 "air in the line" started playing out the night mare I had hoped we would avoid.  We have to find the air remove it in under 3 minutes if not the blood will begin to clot and we cannot return what is in the access lines back to his body.  We started treatment at 9:02 with out any issues as usual.  At 10: 30 a red alarm number 10.  It took a while to locate it and remove it.  Luckily the cycler was still slowly moving the blood.  We won !  At 11:48 with 17 min left to run Red alarm number 10.  We had to call the training clinic they could not get the machine out of the alarm mode and it was not cycling.  He lost all that blood in the lines to the cycler and the blood in the filter awaiting cleaning.  We lost!  The stress is so great we cannot breathe at times.  The clinic did inform me that they had sent him iron for me to give him three times a week after treatment.  It was to be administered in the venous line 100cc and given slowly in 2-5 mins. and only if the BP systolic is over 120. I  am going to have a real moment and say 'I Do Not Want To Do This Anymore!"   Five days a week we get up and do something we do not want to do.  Its not Work, its not cleaning out the garage or even going to the dentist.  It is dialysis for our son ,so there is no NOT doing it.  Another real moment:  If I had wanted to be in the medical field I would have perused a degree and been a lot more educated and prepared than I am now.  Tomorrow we are off.  No dialysis performed on Tuesdays.   We are numb and stunned and the PTSD on Wednesday when we have to start back up again will be almost unbearable.  We will do it and pray for the best! 

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primary caregiver's perspective on Home Hemodialysis dialysis

 "This is undoubtedly one of the hardest weeks I have had on the caregiver Journey.  After so many complications during and after clinic dialysis We have decided to train on home HemoDialysis.  This is our first week and I am feeling defeated.  SO much information...and it all has to be done right..no room for error.  I do not care how easy the Home training clinic says it is , to hook your son up to a machine that is going to remove his blood clean it and return it to his body, is a scary thing.  The anxiety associated with this transition of care for Joe has been pretty rough.  We asked ourselves did we have the dedication to be his kidneys 6 days a week.  Home Dialysis on top of Tracheostomy care , ventilator management and nightly monitoring, general personal care, food preparation, laundry, cleaning , medical transport, coordination of medical care and medication management is some what overwhelming.  Care Giver Stress syndrome is a real thing and We ,my Husband and I, are feeling it this week." 

Week one of the 5 week program was tough.  We completed our training in 3 weeks.  Finishing in so short a time simply meant we were good students not prepared.

 We are now 4 weeks into being at home...and I can say this is a very busy schedule.  It leaves time for little else.  The dialysis run time is 2 hours 20 mins.  The prep, to begin is an hour and the disconnect, clean up and  prepping the Dialysis machine for the next run is another 20 to 30 min. If we need to make more dialysate (used to "rinse the blood") you can add another 20 min to load the machine and it will run for 6-8 hours. We start getting Joe up at 6 to 6:30 we are running on Dialysis by 8 and done by 11. After, We monitor blood pressure on a hourly basis because he rebounds.  His bp will climb to systolic over 200 if we do not catch it and medicate.   This on top of meal prep., tracheostomy care , Ventilator management and monitoring at night, Dr. visits, bathing , dressing , putting the toothpaste on his tooth brush and changing the TV input, are still on the todo list .  The time we wake up and go to bed, when we eat, when we bath, and if we get a potty  break is determined by the needs of someone else being met first.  It is overwhelming , it is heavy and some days it feels difficult to breath.  There is a weight that you always carry.  I am numb.

The cost to not have this weight is to great.   The benefits of home Hemo dialysis are being seen all the time.  He dances a little more and eats a more varied diet.  We have not seen seizure activity of any kind. No clonic jerking, no Tonic Clonic seizures, no focal seizures and less Blood pressure medicine.  I hope in the future less Hospitalization with less seizure activity.  We are counting our blessings and trying to settle into the opportunity to continue managing his health including dialysis.  We are blessed today.

Sheryl

Its an Option....Getting Adjusted To Dialysis

I had the opportunity to visit one of my favorite little Thrift shops in Cola. SC .  The people are so nice in this store and they are a spiritual bunch as well..always refreshing.  The gal working the register commented that she had not seen me in quiet a while 'where have I been?' I explained to her that my sons health had taken a drastic turn, and he was now in Dialysis, and I was taking the time to get a little retail therapy.

He makes a great Allen Jackson for Halloween

 She immediately was so sorry that he was in Dialysis and how hard it must be.  The Lord at that time took hold of my tongue and heart and I replied to her "Its an option and with out it the circumstances could be so much more painful".  I was reminded, even in what we see as tough spots, fail to see that, it is an option.  I have DVT Deep Vein Thrombosis it is a life threatening condition and I take Warfrin ...blood thinners ..to treat it. I have to watch my diet and get regular blood checks to make sure that I am not too thin...also a life threatening condition.  But you know it is an option.  With out an option I more than likely would not be here.  I guess it is like not being able to see the forest from the trees .  Fear and despair are difficult things to see clearly through.  They make our minds and hearts operate in despair and not in faith.  So three days a week we load my little "Alan Jackson" up and head to dialysis..it takes us 5-6 hours round trip but its and Option.  We love him and so appreciate that we still have him .  He gives the best hugs and Kisses...we are loved....and he is loved and we thank God for options!
Sheryl