Saturday, September 28, 2013

3rd Second Chance - Chapter 1.5

Earlier this week, I completed a bunch of transplant evaluation tests. In addition to the tests, were educational sessions; a consult with the transplant dietitian; and a consult with the transplant surgeon.

The medical tests were:
*   24 hour urine collection - This test was ok...  It is, just as it sounds.  Every time I  had to go (within a straight 24 hr period), I would pee into a plastic toilet bucket thingy and then pour it into a bigger plastic jug.  The big plastic jug had to then be placed in the refrigerator, and kept cold throughout the 24 hr period.  I had to place it into a cooler with freezer packs for delivery back to the clinic.  The pouring part was a bit difficult with my one good hand, and my other rubber-chicken-like hand.  More like an opportunity to make a mess.  I was prepared with paper towels and cleaning supplies.  I didn't spill a drop. Surprised myself!
*   Labs - peed in a little tiny cup where they only got a little tiny bit from me - then they drew 22 vials of blood!  Vampires!
*   2-D Echo - this was easy.  Lay on my left side, while the tech uses a wand with a lot of slippery goo.  The wand was moved all around my chest, capturing images inside my heart, while recording sizes, functionality, and various data.  Very interesting to watch, as I could clearly see inside my heart.  When she was through, I tried to get a good glimpse of the results, but could not.  Nor would she give me any info when I asked.  Exactly what she should do, but I thought I'd give it a try.
*   CT Scan of head - Another easy event, as I did not need to drink, or be injected with, any contrast dye.  Laid on my back, with my head and neck resting in a foam cradle.  The CT Scanning machine looks like a big box with a donut hole center, big enough for your body to pass through.  It is a relatively quick test, maybe 5 minutes from the time I laid down, till my head/neck was moved in and out of the machine.  I'm pretty sure I have a brain in there.
*   Sonogram of the Abdomen and Pelvis - This one was easy for the abdomen, and part of the pelvis.  It is kinda like the 2-D Echo with a wand and slippery goo.  The tech pushed and moved that wand all over my abdomen/pelvis areas, as it captured images of my kidneys, liver, gal-bladder, bladder, pancreas, ovaries, uterus.  However..... My uterus is "tipped" or bent backwards, hiding behind my bladder.  So to get a clear view of it, she asked if it would be ok to use an internal smaller wand vaginally.  I said ok.  Let me just say..... It was NOT pleasant.... nor did it go very well.  Holy 'Wand Up Your HooHa' Hell!!
*   Bilateral Carotid Doppler - This one was WAAAAAAAAAAY easy.  Anything after the pelvic probe was easy!  Again, a magic wand with slippery goo was moved along both sides of my neck, capturing images inside the carotids.
*   Ankle Brachial Index - This test was cool.  I laid flat on an exam table.  The tech took my upper arm blood pressures, then took a smaller blood pressure cuff and took BP measurements at both ankles.  Then she placed a tiny blood pressure cuff on my big toe.  It was the size of a regular bandaid with a stethoscope smaller than a dime.  This was wrapped around my toe.  BP measurements were taken from both big toes. Here is a picture of one.... Not my foot, as my toes aren't anywhere near as pretty!

The Surgeon consultation was mostly a get to know, and see, each other prior to going into any heart related surgery.  This would be my heart transplant surgeon.  We discussed the surgery side of things, plus he explained the evaluation committee approval process.  He indicated that all the testing would be reviewed and analyzed.  If any red flags appear, they would need to be addressed and resolved.  A red flag could be finding another cancer, an infection or illness, or a substance abuse, requiring treatment.  Once a red flag item is identified, it must be corrected to move on.

The Transplant Dietician consult went well.  She gave me some good ideas for meals with high protein.  Since I don't cook much for myself, due to the RIBP, she suggested protein shakes with fruits, and Ensure or Boost a few times a week.  This, and yogurts, are easy for me to do!  I will be incorporating them into my daily diet.  She also told me that I am not getting enough calories each day.  She suggested adding ice cream to my protein shakes!  Oh yeah!! She ROCKS!!  :)

The educational sessions were:
*   Transplant Patient Access Services (TPAS) - this mostly had to do with Medicare/Medicaid and/or supplemental private insurance coverages.  The TPAS coordinator works with the insurance to assure coverages for each patient.  Takes the stress of dealing with the testing and transplant costs off the patient. They also present the types of meds necessary after your transplant, along with costs.  This is extremely helpful.  They take the financial burden of guessing or any surprises when it comes to $ coverages and $ out of pocket.
*   Transplant Coordinator Presentation - the Selection Committee reviews each patient presented to discuss all testing results and consultations.  This Committee will make the decisions as to: * Accepted  * Denied  * Needs further testing.  Additionally, the Committee will determine placement on the heart transplant list if accepted.
There are 4 levels of the list:
Status 1A:  Patient is in the hospital on highest amounts of IV drugs, OR has a Left Ventricular Assist Device (LVAD).
Status 1B:  Patient is at home either on IV meds, OR has an LVAD.
Status 2: Patient is at home and stable with oral meds.
Status 7:  On the wait list, but temporarily on hold due to other medical, or substance abuse, issues discovered that need attention.  A patient can be removed from the listing for not being compliant with the transplant program i.e. Not showing up for regular appointments, not taking meds, not respecting their own well being, have a substance abuse issue not willing to deal with, etc..
*   Palliative Care Presentation -  A physician spoke with us regarding potential emotional challenges i.e. Depression; PTSD; Anxiety; Guilt; before and after transplant.  And, of course, there will be physical pain after surgery, whereby pain medication is monitored and administered.  The transplant team of medical clinicians and psychologist staff will be available 24/7.  He told us about the importance of having End of Life and Advance Directives completed in case things do not go as anticipated.  It is important for the patient to make their wishes known to family members and the medical team in case of an unexpected death.  I already have an Advance Directive/Living Will and Medical Power of Attorney registered at the hospital.  Christy will have a copy with her should there be any need.  He also provided website URLs to the hospital form and another outside source.  The URL for this free outside source is So, if you don't have one completed already, do it!  No matter your health.  Tragedy can happen at any time, at any age.  Make your EOL wishes known.  Take this burden off of your loved ones shoulders during a time of grief.

Additionally, there were 3 volunteers who spoke to the group.  Two have had heart transplants, and one had a double lung transplant.  They spoke of their lives before the transplant, and of their lives after.  They were compelling individual stories.  The heart transplants are 26 years and 12 years out from surgery.  The double lung is 8 years from transplant.  Very interesting and, for me anyway, very helpful.

*   LVAD Education Class - LVAD = Left Ventricular Assist Device.  This device may be a stepping stone to help me survive while on the transplant waiting list.  The device works as a functional mechanical heart.  The "pump" portion is placed inside the chest, and hooked to the major arteries.  It is controlled with an outside of the body control pad.  The control pad is hooked to hoses emerging from the abdomen attached to the internal device. It is powered by two large batteries carried in a vest, also outside of the body.  Each battery weighs about 4 lbs.  This device is meant for short term use.  Or, it might be for someone who may be denied from the transplant list, due to other chronic illness, or non-compliance of patient expectations, or due to age of the recipient.  An LVAD may also be chosen by the recipient as an alternative to heart transplant entirely.  Once this device is utilized, it cannot be reversed.  Therefore, it is used until death, or a donor heart is received.  The LVAD works just like a heart, but driven by forces outside of the body.

There were two LVAD using volunteers who spoke with us.  One, has had the device for the past several years.  She is a vibrant woman in her 70's.  She was over the age threshold to be heart transplant listed.  Therefore, this was the only option, other than death, for her.  The other volunteer was a young woman, only 25 years old.  She has had her device for 2 1/2 years.  She has decided to not be listed for heart transplant at this time.  She is satisfied with the device.  Both of these women are healthy and happily living their lives every day.

With all of the educational sessions, a rather large binder covering everything discussed, was given to me.  Good thing it was!  As I would never have been able to remember it all.

All of these tests and educational sessions were quite overwhelming to say the least.  Physically I may be ready for this.  Mentally is another story.  I have stress, anxiety, and fear.  At times I am fine with it all.  Other times I am not so fine.  I want to live - life is a wonderful thing.  I'm not afraid of death, I'm just not ready for it.  I still have things to do, places to go, and people to see.  Death is at some point inevitable. The stress, anxiety, and fear, I have are of the unknown.... Will I have a lot of uncontrolled pain; will I have a stroke during the procedure; will my body reject the new heart; will I get a third cancer to have to deal with; will my suppressed immune system leave me open to a fatal virus; will I awake from transplant, or be in a vegetative state; will my last goodbye to loved ones be as I am taken into the O.R.; will I have had everything taken care of so that there are no big decisions needed to be made if I do die?  So many "what ifs".  These things I need to find piece with.

While I was in the transplant cardiologist waiting room this week, I saw a sign on the wall - it read  "Respect the gift. Respect the giver". Indeed I will.

Now I await my fate from the transplant selection committee on Tuesday, Oct 1st.

Much more to come!


  1. It is a stressful and scary process. But it is proof that information is power. And I want to thank you for the link for the advance directives. Cindy, you're a brave woman and I'm a better woman for knowing you. Rock on, sistah!

  2. I'd like to echo what Scorchy said: Information is power AND you are beyond brave, friend. I am learning that this process, a process that I bypassed, is rigorous and demanding thanks to your sharing of all the testing that goes into a 'routine' transplant eligibility work up [as if this is routine].

    Standing with you on this journey,