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.

Happy Mother's Day to everyone.  It's a double meaning day, as my son was born on Mothers Day so lately since he has been in his twenties he would rather have a hang-out with friends than a brunch with mom-yeah we get it!  But, thanks for the beautiful plant, card, and phone call regardless.  

It's a quiet holiday the weather isn't sure what it wants to do, meanwhile the south facing windows are getting crowded with vegetable and herb plants waiting to be transplanted into the fertile garden areas.  Spring and plants helps me to focus on new things yet I realize the importance of my current health conditions.

I have visited many health pages online and decided that we are going for a second opinion  in Madison to a Vascular specialists that is ranked rather high in the country.  Hubby and I decided that some fresh insights and discussion are needed-the last go around with three separate medical facilities and specialists that aren't coordinating left us crazzzzyyyy.  “You should not hesitate to get a second opinion in fear of offending your physician,” says Gerald Fletcher, M.D., a cardiologist and professor of medicine in the Mayo Clinic College of Medicine in Jacksonville, Fla., who also volunteers for the American Heart Association.
Okay an appointment at the end of the month has been scheduled and we can tag it onto opening the cottage for the next three seasons...good things. 

Meanwhile it has been over two and a half weeks since the LDL Apheresis attempt and my fistula site is almost clear from all the bruises and discolorations...just in time for more tests to determine the access areas of the fistula. Meanwhile, I hope to be in contact with individuals with AV fistulas receiving LDL Apheresis around the country-something like a support system
through the FH Foundation.  It is one of the components that the foundation hopes to get off the ground in the near future. I so look forward to spring and remain hopeful to all that blooms and emerges within my life.

Met with my Vascular specialists today file folder in hand and a positive attitude.  He is a very gentle kind individual a personality that isn't to common in the cardiology world.  He listens, and I can hear myself listening, calming...He listened for over an hour and I think I forgot to say thank-you...I will need to send him out a card of thanks as a patient to a Doctor.

I believe he heard my concerns...and I remain hopeful that we can make a few needed changes for a healthier environment and treatment procedures for us patients hoping to experience a few more years of sunshine...more later, hubby just arrived home from work.

25. April. 2013 LDL Apheresis that didn't happen

First scheduled Apheresis treatment and everything is a go; schedule has been arranged, weather is clear and I feel ready.  Ready as any person facing a new medical treatment.  To begin with I had over scheduled myself in the morning, so I re-thought and prioritized to best prepare my mind and body.  I think this is a good thing to remember on treatment day so I re-focused by cooking a breakfast and lunch of calcium rich foods and a special care package for the afternoon.  I made the electrolyte potion with fresh oranges, orange rinds, honey, salt and water. A supply of calcium snacks-almonds and edamame then packed my briefcase with computer and periodicals.  I was ready to go.

After walking what feels like an eternity to the dark lit hallway on the 4^th floor of the hospital I opened the door to the room only to find another technician and patient by the plasma machine about six feet from the  Aheresis  machine and the recliner style chair.  She explained that my RN would be just a minute and made all the polite introductions etc. that is common during a ladies social.  I really wasn't  feeling like exchanging lives and when faced in a nervous situation I have a tendency to over chatter….I did apologize and settled into my chair.

My RN explained a few procedural points while I read and signed hospital agreement forms and what knots.  She then began to insert the catheters into my virgin fistula-one in one to go!  Ouch…the next catheter didn't go so well and both RN’s pushed and turned trying to get the darn needle into the fistula…ouch, no go out that came pressure applied and another site was discussed and re-discussed and both RN’s determined it was the exact spot-same gig…nothing…Ouch now a clamp on the artery and a great deal of adjectives that describe a disappointing situation.  The only situation remotely compared to this treatment, might be an oil driller, tapping into the earth for the good stuff to bring wealth, although I am reaching for a different kind of wealth, the wealth of life…

Hubby applied Ice packs every fifteen minutes for seven hours which the RN had prescribed (as the treatment room only had ice chips placed inside a latex glove) since I didn't have enough energy to get up and down, feeling like an emotional, exhausted wet noodle.  Later that evening  a dear friend from a club I belong  to sent a card, a lovely card, filled with spring flowers and a note “just letting me know that she was thinking of me today”  and went on to express how difficult a year I have had…I cried for the first time in a very long time.

Wanted to include the drawing that the surgeon made on my fistula arm for the apheresis procedure, prior to it washing off! First scheduled apt. is April 11, 2013...

Scheduled for a fistulagram for the potential narrowing of my new fistula.  Hubby and I scheduled and re-scheduled daily work and activities required for the day and recovery time. Arrived at the hospital were I began the usual prep procedures for surgery.  This is never an easy time for me as my veins for IV use are now only on one arm, where veins are quite small and usually requires several techs to successfully hit that spot. 

As I was wheeled into the operating room, I couldn't ignore my "gut thoughts," so I requested to speak with the surgeon prior to twilight sedation.  My concern focused on the fact that I hadn't had an exam or ultra sound, prior to this procedure being scheduled. The reality was that the information gathered was submitted from the apheresis nurse, who briefly checked my site during a pre-visit that I had requested and that was the reason I was on the operating table.  

Luckily I went with my "gut thought" and spoke to the Dr. who in turn kindly replied well "let's run an ultra sound-hmmm looks pretty good to me." After a brief phone consult with my primary surgeon, I was wheeled out of the operating room, and released. 

Later that afternoon I had an appointment with the primary surgeon to discuss the fistula site; reviewed the ultra sound, discussed the maturation needed for the apheresis treatment, and fistula in general.  Although I am learning as I go about the AV fistula and LDL apheresis treatment, I can truly note that as a patient having the education and information up front prior to procedures could have saved all of us a lot of time and emotional expense.

Today, I woke with a skip in my step and a soft joy of understanding...my body.

Apheresis treatment visit


Yesterday, my husband and I visited the hospital that I will have the LDL Apheresis treatment.  They scheduled us while a patient was having the procedure, so we were able to view and ask questions.  I really appreciated the time and sharing that the patient and nurse took, after all it's not everyday that you can meet with someone prior to beginning a medical treatment as extensive as this one.  

I had so many thoughts and questions prior to this appointment and of course in my menopausal moment left the written questions at home.  Regardless, after viewing the machine and patient they all came flooding back.  The focus of my questions were related to the actual machine and mechanics of the devise and the physical attributes prior, during and after the bi-monthly treatments. What I was left with was an overall reassured sense that the professionals monitor you during the entire procedure, yes you lose an afternoon and evening twice a month BUT look what you may gain-additional years to your life, less drugs and HOPE.  Priceless!

7. March. 2013

Well I am five weeks post-op from the AV fistula surgery.  A few things that I have noted since the surgery on the 28 January, 2013; the surgery site is healing well, the thrill or what I have named "Buzz" is very busy and is a new sensation that may take sometime to get used to, (at the fistula site it actually buzzes when I say buzz it actually on the inside and outside buzzes to the touch, I can also hear and feel my heartbeat.) I apply vitamin E everyday and wash with an organic soap when showering.  Sleeping and laying down remains difficult as I really can't lay on the left side or put pressure on the left shoulder. I am lifting about 4 pounds with that arm now, but can feel a slight pull. If I roll over and sleep on that arm, the next day it feels almost bruised and quite fatigued.  I have increased the ball  and a soup can exercise resulting with an increase of strength and circulation with the left hand. In addition worked on some simple small motor arts & crafts projects which stimulates the muscles and circulatory system. 

Later in the month I meet with the surgeon to see the final heal and if I am good to go for LDL Apheresis treatment in April.

Fistula

Welcome to my blog

I hope to keep posts current as I begin the treatment for Familial hypercholesterolemia a genetic condition that I have been recently diagnosed with.  Although my heart disease has spanned over several decades and actual heart events over the past five years this begins a new chapter a new beginning.

January 28, 2013 I underwent Arteriovenous Fistula surgery for the LDL Apheresis treatment that will follow in a few months taking us here in Wisconsin into early spring a time for new beginnings.  The fistula surgery itself lasted 48 minutes and was performed as an out- patient procedure. My left arm was selected as I am right arm dominate. The incision is a few inches on either side of the elbow (inside area). This is now the site where a vein and artery have been joined to form my new "port" for the LDL Apheresis machine. I also learned prior to the operation that I can never have blood pressure or a blood draw taken from that left arm as the volume of pressure could blow the new "port".  Three days later I went for the post-op and final analysis of the procedure.

 January 31, 2013,  I went for post op and found that the procedure worked as I now have a buz and girgle sound at the fistula site-I can feel this and the surgeon had me listen to the site as I could hear the heart beat and sounds something like a girgle and a sensation.  Three more days of bandages and a preview of a few strengthening exercises for the veins and I was on my way.

Anyone out there candidates or experiencing LDL Apheresis treatment?