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.