LIVESTRONG:

And in June 2013 we are back in the revolving door of doctors, this time for my heart. So the focus has shifted, BUT... I continue to THANK YOU for your prayers, love & support. I receive them with open & loving arms. My wish is that I will gain strength from you, will provide strength to others & will help to strip away the fears we each experience.


LIVESTRONG: I am strong. I am loved. I am healthy. WE WILL WIN!

Have you or your loved one had their annual mammogram? PLEASE, don't put it off. Speaking from experience, I highly recommend monthly self exam as well.

WARNING:
Contents may be uplifting, sad, funny, scary, downright depressing ~ THAT IS CANCER .... at it's best, at its worst.

PLEASE ~ Feel free to share this blog with anyone who is interested to learn about my journey. While I welcome their support, I hope that by sharing this experience freely to the universe I may help to support others by breaking down some of the barriers and fear associated with breast cancer and the treatment.

Friday, April 4, 2014

Good News Continues & I Have a Road ID

But first an update on the previous post about vertigo. Because of the profuse sweating, my ENT does not think it was benign positional vertigo. Apparently the episode had something to do with blood pressure, and moving from a prone position. Mark described the symptoms of like someone in shock. So we will keep an eye on this, and from a discussion with my cardiologist today, I will most likely give up on yoga for the time being.

Today, Mark, Alura and I returned to Stanford Hospital and Clinics for a follow up with my cardiologist, Dr. Michael Fowler. We met Alura along the I80 corridor and she rode with us, which turned out to be a beautiful day, with intermittent drizzles, almost iridescent green grasses, amid gorgeously blue skies and bursts of the whitest billowy clouds. A great time for us all to visit and catch up without toddlers crawling all over us and making demands for juice and milk and such; adorable as they are.

Gorgeous drive home from Stanford
So off we went...

You may recall that at the appointment end of January, Dr. Fowler said he would have a transplant team ready to meet with me at my next appointment of April 4th, to educate us on this probable next step and help relieve my concerns over the procedure. My reference bank is from my brother Richard's heart transplant back in the mid-1980's and all I can seem to remember is all the medications and his struggles, even though it gave him nearly 10 more years of active and fulfilling life. And at that appointment in January, Dr. Fowler made some med changes which helped me to shed 8+ lbs of fluid retention in just a couple of days!

So a few days ago I received a call from RN Marie at Stanford stating she would like to see me before my appointment with Dr. Fowler to do the Left Ventricular Assist Device (LVAD) education. If you check the link, this is the implantable type device we are talking about. By the way, as a refresher, this device is often used as a bridge to a transplant, but Dr. Fowler says that some people find it so easy to tolerate that they decide to live out their life not going through with a transplant. And, should I get an LVAD, then I am automatically moved up on the heart transplant priority list. But mind you I am in no hurry for one or both of these procedures, so will be having some serious conversations with God and my heart to be good and improve. 

I had done some online research, so was prepared to hear about the open-heart surgery, weeks in ICU, then weeks living somewhere nearby in case of issues with a full-time caregiver to support me, then returning weekly at first, then slowly less and less until I could be seen every three months from then on out. But Mark had not heard any of this yet. I knew that the pump was implanted into the chest and that there was an external part to the device too. But I was not quite prepared about the daily dressing changes to prevent infection, and to see the whole gadget, the power pack, and the two batteries that must be worn 24/7 (obviously), not to mention the additional gadgetry (for lack of a better word) that is kept at home for charging, storing data, etc., etc, and must travel with me whenever I leave home. Then there is the inability to ever be submerged in water again (no baths, swimming, spas!!!) Not to mention that this would probably give me five more good years. I mean, I'm feeling so good now; and I'm expecting to be around a lot longer than five more years, let me tell you! But I also knew that this was precautionary as well. Because if/when I need this, it may come on sudden, and I need (we need) to be educated so we are ready to make the decision pronto. But let me tell you, it was all very, very scary for both Mark and I.

We then sat and chatted as we waited for Dr. Fowler to meet with me. His nurse, Erin, is very sweet and also pregnant, so she and Alura, as well as me, chatted about pregnancies and babies and such, once she finished gathering pertinent information and updating my data file. Another nurse came in to interrogate my ICD. That is what they call it when they gather all the recent data it has recorded. There was nothing alarming from the day of the yoga class, so they made adjustments to my device so it will record normal heart rates of 160 and above, which is much lower than it is set to pace or shock my heart.

The follow up visit with Dr. Fowler went well. He is such a fun and entertaining guy. He was thrilled to see that I have been doing so marvelously the last two months, and is very hopeful that this might (accentuating "might" here) mean there could be even the slightest improvement in my heart muscle. He was pleased with my recent blood work, and agreed that we could increase the afternoon diuretic just a bit, as this is when I seem to get a bit congested on most days. Apparently my dosage is still very low. He informed us that the LVAD usually significantly helps 1/3 patients. Another 1/3 feel somewhat better and get a bit of energy. And the rest see little if any improvement in their quality of life. All in all, this was a great appointment, with Dr. Fowler suggesting that yoga might be a bit too much for me at this point; but to stay somewhat active, "Maybe a movie one day, then a walk another, perhaps a nap another day." I like this guy. He even joked that he might come out and join us camping at Doran Beach soon.

Before leaving, we met with yet another nurse about a clinical trial that I will most likely take part in. I'm not sure I have all the details memorized, but they will put my heart diagnosis data into a data base, without any of my personal data, and through a simple blood draw, they will replicate my heart cells and use this along with my genetic testing information to further test dilated cardiomyopathy and its causes. I know there is a lot more detail to this, but this is it in a nutshell at the moment. They will do the blood draw at my next appointment and go from there.

The most important tip I took away from this visit, is when I feel lax about my salt intake (or as he said, when I think about having a pepperoni pizza - NOT), just think about the whole LVAD idea and then choose the low sodium choice. This, I will most definitely do.


Beautiful grounds, and beautiful Alura, in front of Stanford Clinics.


 Family gathering last weekend to celebrate Sarah's birthday.

 



I HAVE A ROAD ID. Thank you, sweetie!!


So now, on to some family time, camping in our sweet trailer, and just enjoying life as I know it at this very moment. AND thank you all for your continued love and support. It does take a village.

Life is Good...

Debbie... aka the cancer SURVIVOR, 
AND now the Cardiomyopathy warrior!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comment.

4 comments:

  1. Replies
    1. Yes, Cathie, such good news. Now, hopefully, I will relax and enjoy the next 4 months!

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  2. Isn't it comforting to take in all the beauty of nature and the joys of being with the ones you love... even in the midst of so much uncertainty and fear? We are with you Debbie and hope and pray that your heart will improve. Every day is certainly a gift. I think we are due for sister time!!!

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    Replies
    1. Yes, Nance; sister time is in order very soon! And you sure know what it is all like. Huge hugs!!! XOXOXO

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Debbie