AV Fistula removed

28. May. 2014

Okay, it's been awhile since I posted but I had a season to reconsider my medical therapy for familial hypercholesterolemia. With the medical community in Wisconsin really not on board with all the "needs" for patients seeking LDL apheresis I truly questioned re-visiting drug therapy and thus removing the AV fistula.  After a very long winter season here in Wisconsin and some quiet time while caring for our grandson, I decided to move forward with my plan.

Weighing the pro's and con's of both treatments and treading slowly I began with a visit and tests with the cardiologists then lipidologists and final visit with the vascular specialists that created the Av fistula. All systems go, I began drug therapy in March which has proved to lower my numbers and the removal of the AV Fistula early May.

Today, I am Av Fistula free, with the full use of my left arm and hopeful that my lipid panel continues to align the numbers for a healthy heart, healthy life...

Second treatment, three "pokes" later (we truly need real time ultra sounds for this treatment) and access began. I would suggest a pillow for your neck and other body parts as sitting so still and long is challenging. Total time for treatment was 3.5 hours, hubby and my "kindle" kept me company.  

Very tired and hungry after treatment and the ride home (75 mile journey.) Three days later hit a wall and was fatigued and over did myself- ended up in the ER...need to slow down, until my body adjusts to this treatment. According to John Hopkins LDL Apheresis treatment director it is not uncommon to have feelings of nausea, muscle weakness, chest pain and fatique from treatment....Another symptom is that Buzz is rather angry after treatment and a few days later begins to calm down and buzzzz less. I still feel for a good thrill and buz each day. I'm thinking about introducing TM and embroidery for relaxation as this entire process is rather invasive to the body and psyche.

Good news on the lipid panels-total cholesterol 112, LDL 37

First successful, LDL Apheresis treatment, Wisconsin

Yellow gallon is the waste material 

Actual procedure

After a very nice picnic lunch with my husband at a local state park, scheduled appointment was 1:30 pm.  Prior to treatment they take your blood pressure have you sign away your life with legal documentation and get you settled into the "chair" for the three plus hour procedure.  The following notes describe the procedure and my physical and emotional response

• Blood pressure is taken and a brief analysis of access points within the AV Fistula is determined.  The arm area is cleaned and insertion of the 17 gauge needles begins and then a flushing of solution (first site was in, but didn't flush which means it wouldn't function,) at this point another technician was called in and after a brief discussion between technicians and myself, I agreed to continue a second site insertion (this site failed prior to flushing) at this point I was asked if they could continue-I took a time out and left the room and had a discussion with myself "by continuing the discomfort of additional "pokes" and hopeful function of the fistula, I could then determine yes, this procedure will work or secondly, I could have the AV fistula removed and remain hopeful for a future drug therapy or medical procedure that I may be able to tolerate.  I went with two additional "pokes" and were both successful!!!!!

• Once the needles and flushing procedure is completed lines are connected to the Kaneka machine and the cleansing of LDL cholesterol is filtered through the absorption column called liposorber begins. Also, a blood draw for lipid panel numbers are taken in the beginning and end of the procedure

 Kaneka’s lipid-apheresis treatment is using an adsorption column to eliminate LDL and Lp(a) particles from blood or plasma. This adsorption column is called Liposorber®.

The adsorber material of the Liposorber® contains negatively charged dextran sulfate bound on cellulose beads distinguished by:

• A selective reduction of positively charged apo B-containing lipoproteins for patients 
  suffering from elevated LDL and Lp(a) levels
• HDL cholesterol and other plasma components are mainly preserved

During Kaneka’s lipid-apheresis treatment the patient’s blood circulates outside the body through the Liposorber® dextran sulfate column where it effectively removes LDL and Lp(a) from the blood or plasma and thereafter returns to the patient.

This can be done:

1. directly by whole blood treatment
2. by plasma treatment after plasma separation

Kaneka’s lipid-apheresis treatment consists of disposable components which are discarded after each lipid-apheresis treatment.  www.kanekapharma.com/en/apheresis.html‎

During the remaining three plus hours your arm access and body has limited mobility, this 
becomes rather challenging and body discomforts (aches and feet falling asleep) gradually 
increase. You are also limited to activities.  I brought my tablet to access reading, social and 
business tasks.  In addition the technician reports how things are going throughout the procedure
with the liposorber numbers. Access sites felt fine, I didn't experience nausea, light headedness
or thirst. Once the overall numbers which I can't recall, have been reached the lines are removed
and cotton balls and tape is applyed with pressure on the access sites for about 15 minutes 

After leaving I wasn't light headed or nauseous but very thirsty-I recommend 

• Ice chips (water, electrolytes) and ice packs for 24 hours
• Increase in dietary foods high in iron
• A good nights rest and light activities for 24 hours
• A driver and support group
• Results of the lipid panels to monitor your treatment

Very large hematoma and additional bruising, WE NEED REAL TIME ULTRA SOUND FOR PATIENTS UNDERGOING ANY FORM OF APHERESIS

Lipid panels- Total cholesterol 132 with LDL 44

July 2013

Summer time update on the AV Fistula

A Few things that I have noticed during these hot days of July, while I wait for medical appointments later in the month to clear the treatment for LDL apheresis, scheduled for August

• Bugs are attracted to the fistula arm, I came out of the woods with a lot of welts from mosquito's, deer and horse flies

• In hot, humid weather the fistula veins come to the surface and the overall feeling on the arm is a tightness

• The Av fistula loves to be under cool water and the movement of swimming

Packing for the first FH Advocates for Awareness Training Conference meeting in Amelia Island, Florida.  That's right the very FIRST get together of twenty plus individuals diagnosed with FH, board members and staff.  In committing to this event I will be fulfilling "the mission of the FH Foundation-by becoming a catalyst of change for the FH community, raising awareness and saving lives."  Pretty tall order-but feel quite confident that I am ready to meet and great with others and begin my journey as an advocate.

Today was spent at a garden party with a lovely group of diverse women on this last day of Spring.  The hostess prepared a lovely brunch featuring her organic produce from the garden and fresh eggs from her five remaining chickens.  It seems that this Spring has been hard on folks raising chickens, as I was at another friends house outside of Milwaukee, WI. last week and they were also having a rough time with their chickens. Hardships, I would never have thought of-but through sharing with other lives, I became part of the conversation.  I'm hoping that conversations and life stories will be shared during the FH conference time as well.... 

I managed to pack everything in a carry on so Buzz doesn't get to angry with me, as this will be the first heat and humidity that the AV fistula will have experienced. Happy First day of Summer!

After a consultation with one of the top Vascular specialists in the US, I have been informed that my AV Fistula is a Gold Star, which means no additional surgeries at this time and LDL Apheresis treatment can begin...Several points that I have learned in regards to the AV fistula (I have named buzz) 

• It's not going to break or weaken
• The fistula can be reversed
• The tightness that I feel in the upper and forearm is the fistula growing which in return puts additional pressure on the surrounding tissue
• My fistula is about 1cm wide and is on the surface (usually in a thinner arm this is the case)
• I can carry and lift and pull objects as long as it's comfortable
• Cold weather it will constrict-hot weather expand
• The brewee and thrill will become louder or more active with blood pressure changes and or strengthening or weakening of the Fistula itself
• The fistula needs to be monitored usually with Apheresis treatment and routine ultra sounds
• Surgery to tie off veins may or may not relief the discomfort
• Because I am ambidextrous, biofeedback for nerve issues may be relevant

Buzz and I have started a new relationship, as I now feel that I have a better understanding of this entity in my body many thanks to the Doc that took the time with my husband I and shared what educational information that he is aware of for this rather new treatment in the  Cardiology world.

Visited one of the three LDL Apheresis treatment facilities in the state of Wisconsin this weekend. I must say it was a sunny, clean room with easy access to the main entry of the building.  Supportive staff members are two, both whom come with multiple years of experience.