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
--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!!  


  1. I'm exhausted! Oh, Cin. We've known one another for such a short time, yet it doesn't feel that wsy. Love and hugs to you as you undergo these tests. I want you with us for a long, long time. --Scorch

  2. I'd like to echo Scorchy's sentiment, Cindy. We haven't known each other long, but we are kindred. I KNOW heart failure feels terrible, and even more so, when it begins to take away some simple joys like singing with the windows down and the music blasting and when the symptoms like fluid retention don't respond to lasix increasing your shortness of breath and making you cough with every word you try to speak.

    Not only does heart failure FEEL terrible; it IS terrible; salt on the wound, ripping a bandage off without adhesive remover, sticking a needle in your neck with no prior warning, when it is the result of life-saving cancer treatment. I long for the day that treatment-related cardiomyopathy is no more.

    Until that day, I am confident that you are in not simply good hands, but gifted hands with my beloved, Gonzo and I count it a privilege to be able to walk alongside of you and advocate on your behalf despite the fact that I am here in GA.

    I am also oh-so-thankful that your 'window' is open and you have time to absorb, process, and question all things heart transplant.

    Oh-so-thankful to call you, my friend.

    Much Love,

  3. Thank you Scorchy! Your words mean so very much to me. I feel the same.... we have connected in that way only few have the pleasure of doing! XOXO There will be a day we will meet face to face! Next time I am home to PA.... or feel free to come to TX! Plenty of room!

  4. Steph - you mean the world to me.... somehow, someway, we connected across many miles. The best connection I could possibly have made at this time of my life, and my health. A friendship of immeasurable proportions!! Love you, my friend! To infinity, and beyond!! :)