3rd Second Chance – Chapter 2.0

Last week, I was asked by the Heart Transplant Team to come into the hospital for another right heart catheter test.  The request came from a discussion between my regular cardiologist and the heart transplant team cardiologist.  And that discussion was the result of my very low blood pressures which cause me to have multiple daily ‘moments’ of either ‘sit now or fall’.  My low blood pressure ‘moments’ have continued regardless of med changes.  Therefore, they thought possibly my heart disease had worsened. 

That one day at the hospital turned into 4 days as I was then admitted to the Baylor University Dallas Hospital.  They were determined to figure out why my low blood pressure was occurring.

 

I had urine and blood labs drawn each day.  All of which were fairly normal for where I am in heart failure.  I had chest x-rays that showed an elevated right diaphragm (which it has for years) and some bone weakness to the right collar bone and right shoulder blade.  Both of which are compliments of the rads received in ’83 and ’05 for my 2 cancers, Hodgkins Lymphoma and Breast Cancer.

The first right heart catheter test had very similar results as it did this past September.  It did not show signs of advancing disease to the right side of the heart as was expected.  But what caught their attention was my right diaphragm not moving along as it should with my lung, and one of my pacemaker leads not in the most efficient place.

Therefore, they scheduled another right heart cath with the focus on my diaphragm and pacemaker lead.  As opposed to having me just lay on the table, they had me sit up, stand up, and exercise, all the while capturing data.  Now picture a catheter tube hanging out of my neck, and the Dr holding it up and away, keeping it sterile.  The techs help me to a sit up position, and then stand me up.  Well, fortunately, I then had one of my low bp ‘moments’.  This allowed it to be recorded and measured.  Once I was ready, the group of techs, the doc, and myself in a gown, shuffle a couple feet to the stationary bike.  As I was almost there, one of the techs said “Wow,  SAT 23.11%!  Have you ever seen it go that low?”.  They all shook their heads no, and pushed me towards the bike seat.  Trying to scoot my butt up on that seat, with a gown blowing open, and a tube hanging out of my neck, whilst having a low bp ‘moment’ was quite a sight, no doubt!  I made it, bike pedaled with and without resistance.  They took more measurements and shuffled me back to the table.  That quick the doc was gone, so I wasn’t getting any info at that point.

Once I was back in my room I had a visit from one of the other docs from the transplant team, who has been with me each day.  She told me they were able to identify 3 issues.  One - the pacemaker lead possibly being misplaced.  The position it’s in is causing my heart to have unnecessary additional beats.  This can be corrected.  Second - is the diaphragm.  It is elevated, sitting well into my chest, and it’s in a paralyzed position.  It’s pushing against, and taking up space, in the area of my right lung.  It is not helping that lung move and breathe in/out, and is what caused the SAT % to go so low upon the slightest excursion.  This is mostly my shortness of breath issue. That’s never going to get better.  It has been frozen in place due to cancer therapy toxicity – my friend, radiation.  Third issue - my blood vessels are not getting the needed signals from brain to nerves to efficiently move the blood in my lower legs back up to my heart – hence the low bp – also a gift from cancer therapy - my friend radiation, and therefore will not ever get better.  She paused, waiting on my response.  I asked her, already knowing the answer, “A ‘new’ heart won’t fix these issues, will it?”.  She said no, the nerve damage done cannot be corrected – a ‘new’ heart won’t make any of this better.  I looked up at her and quietly said, “Shit mother fucker”.  She nodded in agreement, and told me that these findings will now disqualify me as a heart transplant candidate.  Then she sent me home.

Shit Mother Fucker.

I’m still trying to process this information.  It hasn’t been easy.  The biggest thing in my life, that could have extended my life, has just been yanked away.  I am grieving this loss.  

Fuck cancer.

The Latest... :)

Now that I have completed my qualification heart transplant testing, I am in the wait “until I get sicker” mode. Its odd that I know I’ll “get sicker” with my heart damage.  So,I will focus on other important things.  Like laundry, bathroom remodel, my inside plants, loving on my 4-legged kids, watching the news all day, cleaning up dog poop in the yard.  And most importantly keeping in touch with friends and family. 

I took a two week trip home that was perfect.  Stayed with my sister (the central gathering place), visited with good friends and east coast family!  Weather was kind enough to take road trips from Fairfax, VA to Reading, PA to Lock Haven, PA where I got to see and hug my best friend from jr high thru high school and beyond, who I haven’t seen in years. The trees were not as colorful as I have seen years before.  But to me they were beautiful.  Now I will plan a trip to south TX to visit with my niece and family.

This is just some of my wonderful, fun, and loving family…… I love this picture!

I’m very fortunate in the way that I can still travel.  I need help getting from place to place though.  I take my travel wheel chair to get through the airports, and to use if we go anyplace that includes a lot of walking.  I can walk, just not at a pace most walk at, and only about 30 yards, at which time I must stop and rest.  Additionally, if I sit more than 20-30 minutes, I will have ‘a moment’ as I call it.  When I have ‘a moment’ I need to be within 2 steps of a chair, or I will fall down to the floor.  When I stand, my blood pressure drops to a level that is too low.  This truly bites.  When this happens at home, I’m usually ok.  When it happens elsewhere, like in a parking lot at the grocery store, it’s not as convenient.  Therefore, I stand with the car door open (so I can sit down) and pretend I’m looking at my phone messages, until it passes and I can walk across the lot.  Once I’m inside the store, I have to get a cart to push and lean on until I get back to the car.  Woo-hoo!

Now I am back to advocating for all cancer survivors.  I am a small voice in the big sea of cancer issues.  But, I am a voice joining many survivors and, together, we ROAR!  I am currently researching my other late-effect side-effect of cancer therapies, radiation toxicity.  So stay tuned for another blog full of my take on it.  It’s time to float like a butterfly, sting like a bee.

Much love to my family, and friends, as always…..

3rd Second Chance - Chapter 1.6

This post is going to be the end of the Chapters 1.x relating to "3rd Second Chance".  And that is desirable and favorable in my case.

I received a call from my Heart Transplant RN Coordinator this afternoon.  She presented my case (history, recent test results, etc) to the Heart Transplant Selection Committee earlier today.  Their decision is  -  I am accepted into the Heart Transplant Program but not quite "bad enough" to be on the heart transplant list.  That is excellent news!

At this time, the right side of my heart is still in fairly good shape, and functioning within an acceptable index measurement.  All of the other tests I had last week showed good enough results to be accepted into the Heart Transplant Program.  I will still be a patient with the transplant team, and followed by them on a regular basis. In the in-between time, my regular cardiologist will be my primary source to control my meds and keep me stable.

It does not mean my cardiomyopathy went away.  This kind of disease only gets worse as time passes. The left side of my heart is functioning well below acceptable levels.  It does mean that I am currently stable enough on meds.  Once I can no longer be controlled with meds, I will be listed.

So, I have been accepted and not listed.  That's the best of all outcomes!

This closes a chapter in my 3rd Second Chance blog posts.  :)  WOOOOOOOOOT!!!

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  www.MyDirectives.com. 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!

Second, Second Chance - Indiegogo Crowdfunding Campaign - Donation Shoutout!

I need to break away from my "3rd Second Chance" testing updates today for a very special post.   One that is very close to my heart.

What I'd rather talk about is the exciting news we have for the My Heart Your Hands (MHYH)  + Second, Second Chance, Crowdfunding Campaign via Indiegogo.

If you thought that was a mouthful, get ready for another one!  Take a long deep breath...... And....

Second, Second Chance has released a documentary teaser/trailer this past Monday, September 2nd, via the Indiegogo Crowdfunding Campaign in an effort to raise funding to produce a documentary piece stepping into the daily lives of cancer survivors living with the collateral damage of cancer therapies received months, years, even decades ago.

I have linked arms with My Heart Your Hands (MHYH) to join forces, bringing the plight of all cancer survivor late effect, side effects to the forefront.

The MHYH mission is three-fold:
1.  To raise awareness regarding the potential LATE EFFECTS of cancer treatment[s] among survivors, healthcare providers, and the general population
2.  To educate and equip survivors regarding late effects of cancer treatments
3.  To fund late effects research aimed towards early detection, effective management, and ultimately, prevention

In addition, MHYH will serve in support of the promotion of eye, tissue, and organ donation registration.

All of these things are exactly what I have been trying to do on my own.  I am very happy that I was able to find a well rounded organization that is fighting the fight too.  Stephanie Zimmerman, co-founder with Judy Bode, have become my personal friends and co-fighters, eager to make a positive difference for those walking the same steps we are.

The documentary video with donation link is at:  http://www.indiegogo.com/projects/second-second-chance

A "Press Release" has also been posted - http://www.prweb.com/releases/2013/9/prweb11085260.htm
I ask each of you to watch the video, and imagine Judy's story being completed.   Excitingly, Judy's story is at this very moment evolving.  In the early morning hours immediately following the campaign and press release, Judy actually received the phone call.  The call that she had been waiting on for the past 3 1/2 years. There was a heart for her.  It's been a very long week for Judy's family and friends.  Judy is now living with a new beating heart.  She is making progress each day.  Her family celebrates, ever mindful that this new beating heart for Judy, has come from the caring family of someone who has lost their life to an unexpected and sudden death.  Judy and her family will be forever grateful for the decision made by her donor's family in the midst of their grief.

Stephanie Zimmerman, co-founder of MHYH, has had the same type of cancer therapy I had.  And at about the same time frame in the 80's.  Although we had different cancer types.  She had Ewings Sarcoma, and I had Hodgkins Lymphoma.  Judy also had Hodgkins as a child and had radiation therapy.  Stephanie and Judy developed heart issues, much the same as I have - Cardiomyopathy and mitral valve prolapse.  Steph needed, and received, a heart transplant 5  1/2 years ago.  And as you'll see in the video, she is beating strong!!   Stephanie has been my "wing woman" throughout my heart transplant evaluation testing.

Stephanie has been by Judy's side these past few days.  Driving over 700 miles to do so.

So, I ask you to please consider a donation to the Second, Second Chance Indiegogo Crowdfunding Campaign.  It would honor me tremendously if you could.  Whether it be one dollar or a $100.  Each dollar gets us closer to full production of the documentary.  The benefit of a completed documentary will fulfill each of the 3 items listed in the MHYH Mission Statement.

There has also been a very recent @givcause interview with Stephanie.  It is a well spent 30 minutes to get to know the significance of the MHYH - Second, Second Chance platform.  You may watch it at this link - http://t.co/u1EAOE0MUa

Again, if you are able to make a donation, it would be much appreciated.  If you cannot, I completely understand.  It is tax deductible.  And if your company has a matching gift for donations to a non profit org, it could double your gift.

As always - thank you!
Cin

3rd Second Chance - Chapter 1.4

I had my lung consultation this week with the Pulmonary MD. 

He reviewed my CT Scan and PFT (Pulmonary Function Tests) results.  

The CT Scan, compared to the last one I had in 2010, was mostly unchanged.  No evidence of blood clots, or cancer, or any other evilness lurking in my lungs.  All good!

The PFTs indicate that I do have moderate/severe Obstructive Pulmonary Disease.   He isn't quite sure why, or what specifically caused it.  My test for asthma was negative.  I was a smoker, for about 7 years, quitting in 1983.  He said that wouldn't be the cause.   He gave me an inhaler to try.  Although he indicated if it doesn't help within 2 weeks, then it won't be beneficial.  So far, it has made me cough more.  I am not seeing any improvement. 

Otherwise, he said that my lungs looked clear and were well enough to proceed with heart transplant evaluation.  He will send his written report to my Transplant Doc.  More good news!

This week I also had an appointment with my regular Cardiologist.  He told me that he received a lengthy report from my Transplant Doc, and that he agrees I am doing the right thing at this time of my heart disease.  Hhhmmmmmmmm.....  ✔ one for me!

My blood pressure has been running low... too low.  Recently, I've been having more "moments" of extreme light headedness, resulting in one black out incident.  A "moment" tends to occur whenever I've been sitting for 20-30 minutes and I stand up.   For example, when I get up from the sofa, I need to walk about 7 feet to the kitchen counter.  If I get up too fast, by the time I reach that counter, I'm hanging on for dear life.... And if I can't make it to the stool, just 2 more feet away, I will feel my knees begin to wobble.  I will either make it to that stool.... Or.... I will drop to the floor.  Totally unpleasant indeed.    If I get up and pause long enough, I can keep my "moments" more under control.   So, the Doc  reduced one of my meds that will bring my BP up a bit.

Once my Transplant Doc reviews the testing and written reports, he'll indicate what will be the next round of poking and prodding.

I often stop and think about this whole process, and the celebrated steps along the way.  I know its still early on in the process and my heart still functions on its own.  So it's hard to bring on the reality of replacing my heart.  I don't want to make it sound like its "so matter of fact".... It most definitely isn't.  I'm still not even sure how I feel about it yet.  There's way too many emotions that I can't quite sort out just yet.  

Stay tuned.... More to come!  

3rd Second Chance - Chapter 1.3

As scheduled, I had my CT High Resolution Chest scan and PFTs on Monday. I was hoping to have radiologist and physician reports by now to possibly share.  But, not so.  Instead I'll describe the tests as I experienced them.

Both series of tests were non invasive!  No major pokes or prods.

It started with the CT Scan.  Very easy.  Essentially, I laid flat on my back, on a very thin table.  I had to raise my arms up over my head (which is rather difficult for me due to the RIBP).  The technician aligns the table with the 'donut' hole of the CT machine.  When the scanning was ready to begin, the table moved through the 'donut' hole, aligning my neck and chest.  At the same time the table moved back and forth, inside the CT 'donut' hole, I could see spinning of the scanner inside the machine.  This spinning device is what takes the 3D images and pictures of my chest from front to back.   Relatively high radiation is used for this test.  In all, I would say the entire scanning portion took 4 minutes.  No contrast dye to drink, and no contrast dye injected. :)

Next up was the Pulmonary Function Testing.  Also, somewhat easy.  These tests took much longer to complete.  I am guessing, that overall, they took about 45 minutes.  The tech had me sit in a small, glass room.  Sorta like a telephone booth.  Connected to the inside of the booth was a tubular breathing gadget, with a blue mouthpiece.  Most of the tests were performed with the booth door open.  For each test, I had to place a nose clamp over my nostrils to keep all breathing through my mouth into the mouthpiece.  Measurements were taken for exhaling and inhaling strengths.  Most tests were repeated 3 times. One of the tests was to check if i have asthma.  The tech had me do a series of breathing steps through the mouthpiece.  Then gave me too "shots" from an Albuterol inhaler.  Then, I repeated the series of breathing through the mouthpiece.  The tech did share with me that I do not have asthma.  I had all of the breathing tests as I previously indicated I would in the blog post of August 9.  The exception was I did not have the ABG (Arterial Blood Gas) test.  Yay!!

Here are a few pictures to show the booth I was in.  The breathing tubes were swung out and away in these pics.  But, when the testing begins, the breathing gadget is moved inside the booth.   There are also a couple of links to videos I took of the testing booth.

 You can see my cute little nose clips on the chair.

The breathing tubular gadget is swung out of the both on the left.  The blue portion on the end of it is the mouthpiece

PFT Booth 1  Click for video

PFT Booth 2   Click for video

I received a copy of the PFT results.  I did not receive a copy of the Radiologist report for the CT Scan, nor did I receive a copy of the Physician report for the PFT.  I will need to wait for my evaluation appointment with the Pulmonologist on Aug 26 to learn more.

Have I told y'all that I absolutely HATE to wait!

That's all I have for the moment.   More to come after Aug 26th!

3rd Second Chance - Chapter 1.2

UPDATE:

My Right Side Catherization on Monday went well.  It was relatively painless.  Bee sting of lidocaine to the right side of my neck.   Followed by lots of pressure and a few more pinches.  No drugs to ease any anxiety or nervousness.  I was actually fine without them. I was totally conscious.  Once the IV sheath was inserted into my jugular vein, the Dr started feeding the catheter.  I could watch it on the monitor as it moved through the vein, and into the heart.  When it entered my heart, I could feel it.  An odd feeling.  Almost a tickle.  Although I did not laugh, I believe I may have coughed.  Then I could see it pass all the way through my heart, and out the other side.  Quite cool, indeed.  Several times during this process, the Dr drew small amounts of blood, handed them off to a tech, who placed them in a machine.  From that machine various measurements were taken.  There was also a tech watching a PC monitor, capturing various pressures.  All of these measurements and pressures roll up to an index.  My index was 2.84.   A normal cardiac index, according to Wikipedia, is 2.6 - 4.2.  If it was 2.0 or below, they would have started me on the Primacor IV drug (to aid with moving oxigen rich blood), and kept me in the hospital for all testing. 

Although the right side of my heart tested well, within a normal index, it is only a matter of time for it too, to fail due to the progression of the disease.  The left side of my heart is what is severely damaged.  Primarily a result of the Adriamycin in my chemo and radiation therapies.  So we are still moving forward with the transplant testing evaluation.  I will just need to do it as an outpatient.

Next up are a high resolution CT scan of chest, and  several Pulmonary Function tests.  

A high resolution CT (HRCT) scan takes many very thin sliced pictures of the chest.  Like cutting straight through my body, from front to back.  Each slice provides a lot of detail about the organs and other structures in the chest.  This will determine what damage the radiation has caused my lungs and chest.  Fibrosis, or scar tissue, causes breathing and lung restriction.  It will also help indicate how much of my shortness of breath is due to my heart damage.  All I'll need to do is lay flat on a table that will slowly feed through a large donut hole of the CT machine.

The Pulmonary Function tests consist of a DLCO, ABG, PFT and lung volumes.  

A DLCO is a lung diffusion measurement of how well the lungs exchange gases.  A major function of the lungs is to allow oxygen to pass into the blood from the lungs, and to allow carbon dioxide to pass from the blood into the lungs.  To do this test, requires breathing through a plastic tubed mouthpiece, and performing exhaling and inhaling steps as directed by a tech.

An ABG (Arterial Blood Gas) test measures how much oxygen and carbon dioxide is in my blood. It also determines the acidity (pH) of my blood.  This test checks how well my lungs are able to move oxygen into the blood and remove carbon dioxide from the blood.  Blood is taken from an artery in the wrist, a femoral artery in the groin, or the brachial artery in the arm.  OUCH!!  

A PFT (Pulmonary Function Test) Lung Volume measures the function of lung capacity and lung/chest wall mechanics to determine whether or not there may be a lung problem.  It will measure how much air I can exhale, and how much air I can inhale.  Specifically, how much air can I blow out of my lungs and how fast can I do it - strength of breathing muscles. This too, is a test that requires breathing in and out of a plastic tubed mouthpiece, and performing exhaling and inhaling steps as directed by a tech.

All of these tests are scheduled this coming Monday.  Followed by a consult and evaluation by a pulmonary MD, who works directly with my Transplant Team, at a later date.

Overall, I feel OK.  A bit more tired, more coughing, more light headed.  But still, I feel OK.  The heat here in TX has been in the 100's the past couple weeks.  That kind of heat makes breathing a bit more difficult.  

I'm still on target for overall evaluation - more to come!  :)

3rd Second Chance - Chapter 1.1

UPDATE:

I have been scheduled to do the Right Heart Catherization this coming Monday, 8/5.  Depending upon the outcome of the results, I may come home the same night, or next morning.... or, I may be able to stay for the week, and complete all transplant testing.  That, is preferred for me!  Otherwise, if I get sent home after the Cath, I'll have to do all the tests I listed on the previous post, as an outpatient.... Not fun.... Driving downtown, paying to park, very exhausting for me.  So, as those who know me best, for me to say I "want" to stay in the hospital, know it would be the better option overall!  

I may be 'out of touch' for a day or two at most.... :)

3rd Second Chance - Chapter 1

First Appointment with Transplant Cardiologist:

First impression of office management - poor.  My appointment was for 11:00.... of course, I was there, and checked in, well before 11:00.  At nearly noon, I asked the desk person if she had any idea how much longer till I would be seen.  She checked and said there were still 2 ahead of me.... wtf??  So, I sat back down till about 12:30 when I got called back.  Had a few vitals taken, and then sat in an exam room for another 20 minutes.... sigh.... At that point, my assigned RN came in.  She explained who she was, and asked several medical questions, told me that Dr H likes to go through medical events I've had in chronological order.  Then she said she would be back in when the Dr is available, in maybe another 20 minutes.... UGH!!!  Finally, after about 20 minutes, the Dr H and RN came in, and we could begin!  Let's hope that going forward, scheduling is much better on their part.

After all that waiting, and additional stress on top of what I was already feeling,  the conversation with the Dr allowed me to relax again.

Overall, here is what was discussed during my consultation with Dr H:

*  He asked questions regarding my initial diagnosis of cardiomyopathy and the process of heart failure up through current day. 

*  We went through all previous cancer therapies received for the Hodgkins Lymphoma and Breast Cancer.  What types, where treated, by what Oncologist.

*  All previous surgeries reviewed and discussed.

*  Medications and allergies 

*  He asked how I am feeling now - strength, shortness of breath, pain, at home blood pressures, weight, water retention, etc. -- short answer is I'm tired, fatigued, I get short of breath easily, I've been retaining some water that's been tough to be rid of with the meds and diet.

*   Then he asked me why I thought transplant may be my next step.  I told him I understand how my cardiomyopathy will not get better with meds.  That I know my heart is getting weaker and struggles to keep my major organs fed.  I wanted to be evaluated for possible transplant, and have a plan for what's next.

*  He said I am at that stage in the disease process where I should go through the evaluation testing.  

*  He indicated that I may present an issue with scar tissue that has built up and spread throughout my chest.  This could cause problems surgically.  Would be difficult to get through and open to the heart. 

*  Otherwise, I will be tested as an inpatient, for approximately 3-4 days.  

*  Below are a list of the tests I may be having - The RN said I'll be very busy!  

--Right Heart Catheterization - is performed to determine how well the heart is pumping and to measure the pressures in the heart and lungs.  This will be the toughest test, and will require a night in Intensive Care.

--An IV medication called Primacor may be given and sent home with me, depending upon the outcome of the Right Heart Cath.  If my measured pressures/indexes are low, I may benefit from this med, as far as side effects.  However, it is not a med that will "fix" my heart.  This med would be pumped into an IV-Pic line, and will require visits in home nurse visit care.

--Blood testing

--Blood and tissue typing

--Echo

--Electrocardiogram, also called EKG

--Cardiopulmonary stress test - maybe not this one.  As I had one a couple months ago

--Pulmonary function tests

--Urinary system evaluation

--Abdominal ultrasound

--Chest x-ray
--CT Scans

--Vascular Doppler studies

--Complete physical exam - poking... prodding... probing.... 

--Meet Dietitian 

--Meet Surgeons

--Meet Anesthesiologists

--Meet Nursing Staff

Now I am waiting for my schedule coordinator to call and give me some date options.....  Waiting.... always the tough part for me.  

I also had to meet with a Social Worker, after the Dr visit.  She, and the RN I met earlier, will follow me throughout this entire process, now and after transplant.  From this point on, everyone I meet at the hospital, and in office, will be assigned to my case.  This way we gain knowledge about each other, giving me comfort in knowing my team, and my team knowing me.  The SW gave me some "homework" to complete.  When, and if, I am able to receive a new heart, I will need 24 hour care at home for at least 6 weeks, once I am released from the hospital.  My "homework" is to provide a list of people who will be able to fill in, when Christy cannot. 

So, Now I've met my Transplant Cardiologist, Dr H; my RN; my SW.  I like them all! Each one of them was able to help me feel comfortable with the process.  Each was not only professional, but also personable.  I'm looking forward to meeting the rest of my team.

That's it for Chapter 1.  More to follow!

On another note.... My pace maker has been misbehaving.  Since Friday, the outside lead has been bumping against a muscle or something in my abdomen.  It doesn't hurt, but it is a weird sensation!  Kinda like an alien trying to bump its way out of my body.  It is a steady beat when it occurs.  Breaking up my speech when I try to talk, like fast hiccups would do.  It's annoying, wakes me while trying to sleep, and tires me quickly.  I find that if I lean to the left, it'll stop.  I have a Dr appointment Tuesday morning to get it checked, and voltage adjustment, if needed.  Hoo-Ray!!

Oh, and while I was riding in the car the other day, listening to music, nodding my head to the beat, thinking all the words, I thought of one thing I really miss.... The ability to actually sing along to the whole song, in my outside voice.  I can usually blurt out a few words before getting short on breath.... But I want to sing it loud, and out of tune, while driving with the windows open, bopping my head, and embarrassing anyone who is with me! Yah!  Little classic rock!  Little Lynyrd Skynyrd!!  

30 Year Cancerversary

July 5, 1983, a Tuesday.  30 years ago.  I remember it all to well, as it was my very first experience with cancer darkening my personal space.  I immediately thought of my aunt who was taken by cancer when I was a teen - something I didn't really understand but knew it was painful in many ways.  

When this cancerversary rolls around, I feel the same anxiety, fear, and sadness, of that day.  

I had to go back to work and tell my boss.  I had to call my sister, and ask her to meet me at Mom and Dad's house.  I sat cross legged on the floor in our living room.  My Mom was sitting on the sofa.  My sister on the edge of Dad's chair, waiting for whatever news I was evasive about on the phone.  I finally was able to choke out the words that I have cancer.  I remember hugs, and crying, and questions I had no answers for.  Next... I had to wait for my Dad to come home from work. Telling him this news was again heartbreaking. I could physically see him sink.  Throughout the day, and those following, were many, many, more hugs, questions, and tears.  

The days, months, and year after my diagnosis were complete and total hell.  Which is an understatement.  A living hell, I could have never imagined.  There were days I wanted to die.  There were days I thought were my last.  Fighting through that year was extremely hard.  And my fight was weakening towards the end of chemo and rads.  

At a young age, when we should still believe we will live forever, and death is not a thought or option, I was writing my last will and testament.  I was planning my own funeral, giving my partner and family my wishes.  My youth, was taken away.  No more did I have the free and easy- live each day with no fears - believe I would live forever - make the same crazy choices - I had one year before.

So, this well remembered date is not a happy, bake a cake, kind of day.  Instead, it is a day for me to relive the dark memories of my "day - and year of hell".