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.

Wednesday, February 12, 2014

HOPE & EXCITEMENT

Yes, that reads Hope and Excitement!

Hope, that maybe there is some light at the end of the tunnel, because the last three months definitely had Mark and I, and both my cardiologists, feeling very doubtful for anything better than a heart transplant sometime in the future. And in reality, that is probably still true, but...

Excitement, that last week I actually had the strength and energy to walk to the mailbox, back up the hill, all the way up the lower road and through the locked gate, and then back home. All while feeling a bit out of breath, but able to keep on putting one foot in front of the other, without needing to stop and rest or catch my breath. And with my legs feeling strong enough to carry me. I probably could have even hummed a tune!  :-) This was not something I could do the previous week -- I wouldn't even have considered it. I couldn't even make it up the stairs to my sewing room without stopping every 3 steps or so to rest. And my iPhone App had previously been showing a pace of about 50 minute miles -- no fooling. Last week's pace was 22 minute miles. That might not sound too great to most of you, but for what I've been able to do, this felt almost miraculous.

I am not out of the woods, by any means, but I feel better. And that is pretty darn important for my sanity, and my sweetie's, and rest of the family. It has been a long hard 3 months, with lots of questions, and wondering what the next step would be. 


So what changed, you may ask?

I saw Dr. Fowler on January 31st, who is the cardiologist I see at Stanford and is the Director of Stanford's Heart Failure Program. We see him from a referral from Dr. Dhar, since my heart failure is graded as "severe" and Dr. Dhar wants to be sure we are doing everything we can to improve my heart function. This also assures that I am in the Stanford system should surgery or transplant become imminent. The last time I saw Dr. Fowler was in August, and at that time he felt we were on track and all the appropriate meds in place. And I was improving at that point too.

Stanford did a new echocardiogram and an EKG. The echo showed my heart had not improved and the EF is still around 18%. The report from my St. Jude ICD had the St. Jude technician and Dr. Fowler wondering if I might be a candidate for a 3-lead ICD, rather than the 2-lead one I have. But the EKG confirmed that the 2-lead model is the appropriate one for me at this time. That may change in the future, but all is good in that department for now. But after doing the tests and complete exam, Dr. Fowler said to me, "You must not be feeling like doing much of anything right now." Boy, did he hit the nail on the head. I had been waiting for a question as to why I was not being more active, but was worrying needlessly. So Dr. Fowler changed some meds up a bit. He said I was still carrying around way too much fluid from the heart failure, so increased my diuretics significantly for the weekend. Then on Monday he dropped the evening dose slightly going forward. He also added Digoxin and changed the dose on my blood pressure medication.

And amazingly enough, I dropped 8+ lbs of water weight from Friday morning until Monday morning.  That was how much fluid I was retaining. And why I was coughing a lot (fluid in my lungs), had difficulty laying down at night without an additional pillow, struggled to climb stairs, etc. All that improved significantly right away over the weekend.

I am having labwork done every Monday for now, to be sure that the change in medication doesn't cause other imbalances in other organs, such as kidneys and such. And so far so good.

So I am pleased with the additional weight loss. Not that this is any way I would encourage someone to lose weight. But if there is a positive side to this illness, at least I am getting rid of excess weight and my heart is having an easier time of it as a result.


 Genetic Test Results

A very much anticipated appointment we had at Stanford that same day was with the geneticist. She had the results from the genetic testing that was done back in September at Stanford. I wish it had been more definitive, but it was not. 

Genetic testing did find three variants that might be the cause of my, and some of my siblings, Dilated Cardiomyopathy (DCM), or might be normal genetic differences that don't cause health problems. For those that understand this stuff, or want more detail, the technical name for these variants are p.Pro24060ThrfsX9 in the TTN gene; p.Ala2294Gly in the DSP gene and p.Glu1127Gly in the RYR2 gene. The variant in TTN is a truncating variant, meaning that it is thought to shorten or eliminate the protein product of the gene. However, the TTN gene is the largest gene in the body and these types of truncating variants in the TTN gene have been reported in up to 3% of healthy control individuals, so it is unclear whether these types of variants in TTN actually lead to cardiomyopathy. This particular variant in the TTN gene has never been seen before, either in people with DCM or people without DCM. 

This happens fairly often. Many of the genetic variants that cause DCM and many of the normal genetic variants that don't affect health are unique to a person or family and have not been seen in other people. 

The variants in the RYR2 gene and the DSP gene may or may not contribute to cardiomyopathy. There is not enough information available about these variants to know if they cause DCM or they are normal genetic differences that don't cause DCM. We all have many normal genetic differences that are unique to our family and don't affect our health. It's possible that one or both of these variants are what caused our DCM or that our DCM was instead caused by a variant not found with this test. 

In about 15-20% of cases of DCM, current genetic tests can't find the variant causing someone's DCM. So it is very possible that our DCM was caused by another variant that this testing could not find. 

So at this point, we do not do anything different. Basically, the genetic test could not find anything definitive related to our DCM. But we have all seen cardiologists and are doing what is recommended in preventative testing and such.

So that is the latest. I am 12 days out from the appointment at Stanford and changes in medication that took place at that time. I continue to feel much better, and took a nice walk with a dear friend this morning. Our walking pace during the 1.5 mile walk at Eldridge, near the Jr. Farm, was an amazing 19:43 min/mile. I did need a nap when I returned home, but who cares. I'm just thrilled to be feeling up to walking at a pace that a friend might care to walk with me; instead of hobbling along, gasping for air and looking like I might pass out at any moment. 

Life is Good...

Debbie... aka the cancer SURVIVOR, AND now the Cardiomyopathy warrior!!!
LIVESTRONG
• I AM STRONG • I AM HEALTHY • I AM LOVED •
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