Monday, July 29, 2013

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!!  



Friday, July 5, 2013

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".