My heart speaks again

I was fortunate enough to catch this image in northern Minnesota of an eagle perched on a branch a few years ago. I was mesmerized for the 15 minutes or so where I was blessed to be in the presence of such an amazing spirit. I return today to this image, as I am reminded, to slow down and pay attention to my heart which has been calling out to me to listen ...

I haven't written much about my health. It's been intentional. For several years I feel like my life has been filled with doctor visits, surgeries, medical procedures and tests and an onslaught of health challenges. Even though I haven't written or talked much about my health lately, the reality of my health challenges remains an undercurrent in my life. Similarly, I walk this delicate balance with Ahnung with her two bouts with aggressive cancer, and learning to find some semblance of peace in the midst of an incredible amount of uncertainty. I can't change what life has placed in my path, but what I can change and control is what I choose to focus on ... and for me, it's been to focus on what makes me feel alive and all of the work I am doing in animal welfare here in Minnesota and the hospice volunteer work that Ahnung and I do as a team.

Unfortunately these past few days my heart is speaking out to me again. I saw my electrophysiologist/cardiologist in April of this year. It's been 16 months since my heart procedure and when he told me it could be a year, 2 years or 10 years before the symptoms from my left ventricular noncompaction (a heart condition that will most likely lead to heart failure) would surface. For the past month or so i've had occasional bouts of heart palpitations and waking up in the middle of the night from my heart feeling like it's going to hop out of my chest. But they've been sporadic and infrequent enough that I figured it's just a blip :) I've also had increased fatigue but i've been telling myself it's probably from stress, and I just accommodate by going to bed early and getting more sleep. But now with increased palpitations, which are always worse at night, it makes it hard to get sleep. For the past three nights it's been persistent and consistent. I'm waking up every couple hours at night like I used to back in 2011 before my heart procedure (although last night I got a streak of 5 straight hours of sleep for which I am extremely grateful for!). I've also had this feeling of heart burn ... so yesterday I caved and I called my doctor's office. On Friday I go in to have a holter monitor put on me so they can check the rhythm of my heart and to see if i'm having significant PVCs again (pre ventricular contractions ... essentially when your heart starts beating from the wrong place in your heart and it feels like a skipped beat). I will then be meeting with my cardiologist on the 24th.

These past few days as my heart has been speaking out I am reminded of the fragileness of life; i am reminded of all the uncertainty that flows in the undercurrent of my life's journey; i am reminded of how I must embrace uncertainty with as much zest, life, wisdom and passion as my sweet Ahnung.

Summer is coming to an end, and leaves will be changing colors soon. Seasons. There is a time and a place for everything. 

Before actress Gildna Radner died of ovarian cancer at the age of 42, she said, "I wanted a perfect ending ... Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity."

As my heart continues to speak to me, may I approach whatever is in store for me, with curiosity and acceptance of a life filled with 'Delicious Ambiguity.'

Happy to be Home!

I am so happy to be home! I am also so grateful for the love and support I had as I went through my heart procedure this past Tuesday. What an incredible team of friends who helped me in caring for my 3 furkids and also supporting me while I was in the hospital ... my friend Vicki picked me up at 5:15 Tuesday morning to take me to the hospital and to be there while I was undergoing the procedure and to keep my family and friends up-to-date. The procedure itself only took 2 hours as my heart was cooperative and started firing off irregular heart beats right away, making it easy for them to locate the source of the problem. There was an area in the right ventricle of my heart that was causing the problem so my doctor burned that area in my heart. I remember getting loopy as they wheeled me out of the prep room and into surgery. I remember seeing all this fancy equipment and voices ... and then the lights went out for me. When I awoke I was being wheeled back to recovery. Everything seemed foggy to me. I remember someone saying that the procedure went well. It was hard for me to form sentences or to talk. I remember seeing my friend Vicki waiting for me in recovery as my bed was wheeled into the room. My chest was hurting and my heart felt like it was on fire. The nurse asked me how I was doing ... i mumbled that I felt a lot of pain in my chest. I remember seeing my doctor and he said to give me some pain meds for my heart which they injected into my IV. Shortly after they injected the meds the right side of my body started to tingle and get numb. I asked the nurse "am I supposed to feel tingly sensations?" She asks, "where are you feeling it?" I replied, "in my right arm." She calls my doctor back who then asks me to squeeze his hand first with my left hand then with my right hand. I squeeze hard with my left hand. I can't feel my right hand - it feels numb and weak. "Squeeze as hard as you can" my doctor says. In my head i'm saying "i'm squeezing as hard as I can." He asks me to lift my right arm, my right leg. I can't lift them. I am overwhelmed with emotions. I am just coming out of the anesthesia, my heart is still burning with pain and I can no longer feel the right side of my body. Vicki is holding my hand and rubbing my head. The nurse is lovingly asking me how i'm doing. Tears start to fall. What's happening? Did I have a stroke? I can't stop my tears. I am grateful for my friend Vicki and the nurse who gently wipe the tears from my eyes and continue to comfort me.

My doctor says he is going to have a neurologist come in to see me. In 5 minutes a neurologist shows up. He asks me to do a bunch of things. My left side is strong but I can barely feel my right side. I want to just cry. I can answer his questions. My brain seems like it's working fine so why can't I move the right side of my body? Why do I feel so weak? He tells me that he's going to send me down for an MRI of the brain/neck. In less than 10 minutes I am being wheeled down and within minutes have been transferred over to the MRI machine and am laying face up, motionless, for 45 minutes as I hear loud noises, feel my body vibrating and feel contrast being shot through my veins.

I am wheeled back to recovery where I remain for about an hour before I am taken up to my room. The pain in my chest has dissipated -- the drugs must be working. My doctor reminds me that they burned my heart so it's not surprising that I feel pain. I start noticing sensation in the right side of my body slowly coming back. The neurologist comes to tell me that the MRI comes back negative for hemorraghing and stroke. I am so relieved. He is able to tell the sensations are starting to come back and tells me that it could be my body reacting to the drugs. He tells me, with a smile, your brain is normal and I can give you a certified copy of that so that you can show that to your friends! :) It takes a little while but eventually the strength and sensation return to the right side of my body.

When I am up in my room the nurse tells me that I can get up to go to the bathroom. I have been laying still for several hours and the entry site on my leg that they use to get to my heart should now be clotted. I slowly stand up from my bed and shortly after I am up my nurse looks at me with concern and says 'you're bleeding. I need for you to sit back down on the bed'. I look down at my right leg and my gown is drenched with blood, there is blood on the hospital floor and my leg has blood dripping down. I didn't feel anything because there is still some numbness in my right leg. The nurse has me lay flat on my back. I'm feeling lightheaded and somewhat nauseated and like i'm going to pass out. The nurse applies pressure on the incision to stop the bleeding and they start fluids on me again. After that little bleeding episode I am back to bed rest and am told it will be another hour or so before they will let me try to stand up again. It doesn't surprise me that I had bleeding problems again ... they tell me it's uncommon to have bleeding problems but unfortunately I seem to fall into the category of the minority .... fortunately they only went through a vein (and not an artery) so stopping the bleeding wasn't too much of an issue.

As the day went on I started feeling much better. I regained full sensation of my right side, the chest pain completely went away and I had no more bleeding episodes. I was also told that my heart was beating in sinus rhythm, meaning normal rhythm. There were only occasional PVCs, which is 'normal.' I was able to sleep for 5 hours straight.

My cardiologist came to see me the next morning to check on me. He's such a great doctor and I feel so blessed to have him on my healthcare team. He said I gave him a scare with the  numbness on my right side and he was concerned that I had had a mini-stroke. I thanked him profusely for everything and for helping me get back to my normal heart rhythm so that I can now sleep through the night! For me this is the greatest gift after not having uninterrupted sleep for 2 and a half months! I will go back to see him at the end of July for a 2 month followup. We hopefully have one of my heart issues resolved for now and he said he will just  need to keep monitoring me closely for my other heart issue (left ventricular noncompaction - LVNC).  I ask him more about what we can do for the LVNC and if it is progressive. He says it is progressive. Eventually the structural weakening in my left ventricle will lead to weakening of my heart. There are also other things he said he needs to watch for such as arrthymia in the top chambers of my heart which could lead to strokes; he also needs to closely watch for electrical problems in the left ventricle of my heart which is more concerning that electrical problems in my right ventricle. I ask him how long will it take for my heart to weaken? He tells me it won't happen overnight ... "a year, two years, maybe ten, maybe more ..." The key is to stay on top of it. In my head, I say to myself ... this all sounds so familiar with the journey i've been taking to deal with the cancer/pre-cancer in my breast.

For now, I am simply grateful that the electrical problems have been resolved. I am grateful for the incredible people I have in my life ... and of course, my beloved animals (Ahnung, Missy and Mister) ... I am grateful to be able to put my head down on my pillow and fall asleep.

The Lord is my Shepherd

I am now less than 24 hours away from my heart procedure. It's been a long journey for me. It's hard for me to believe sometimes that it was March 14th when my sleep problems first started, and then 5 days later my heart problems were discovered by 'accident' as I was getting prepped for my MRI guided breast biopsy. Since fall of 2008 it just seems like I have had one health issue after another. Feeling strong and healthy on a consistent basis feels like a distant memory ... maybe it feels so distant now because of continued sleep deprivation. Last night was a rough night for me ... crazy dreams and waking up every hour to hour and fifteen minutes. My heart feels like it's ready to pop out of my chest. I know my anxiety is up today as my procedure is tomorrow and the logical/analytical side of me processes what has happened to me over the past couple of years with health procedures. I've had 3 lumpectomies (May 2009, Dec 2009, Oct 2010) and none of them really scared me. What was more anxiety-provoking was waiting for the pathology reports. I've also had two MRI guided breast biopsies (Aug 2010, Apr 2011) ... and both times I was told by my doctors (once down at Mayo and most recently here in the cities) that there was a less than 1% chance of complications, primarily bleeding problems. And both times I had bleeding problems and a hematoma. Then in April I'm told by my cardiologist that I have ventricular bigeminy and that 25% of my heart beats are coming from the ventricle and not the sinus node ... and in a 'routine' cardiac test done prior to meeting with a electrophysiologist (a cardiologist who specializes in electrical rhythms of the heart) they discover an 'incidental' finding ... abnormality in my left ventricle leading to the diagnosis of left ventricular noncompaction, a disease only .1% of the population gets ... and a disease with a lot of unknowns and uncertainties and not the best prognosis. So here I am the night before my heart procedure and the logical part of my brain tells me that I haven't been on the 'right' side of the odds. I've fallen into the less than 1% with complications and being diagnosed with a rare heart disease. My doctors at Mayo and in the cities have also called me an anomaly with how pre-cancer/cancer cells are developing in my breast. My doctors at Mayo tell me it's a question of when I will get breast cancer and not if I will get breast cancer. They're not even sure if I don't already have it but they can't confirm it. All they can say with certainty is that the cells in my breasts are changing and they believe that something in my immune system has lost its ability to identify abnormal cells. But my health journey took a detour when heart problems popped up ... breast cancer is now secondary to my heart problems.

So here I am working hard to counter the fear and anxiety that at times consume me .... and I ask myself, why am I so afraid? What am I afraid of? and the conversation with myself continues ... "it must be death ... but why?" I've always imagined a time when I would be reunited with my father, and yes my beloved pets (Splat, Shen and Shadow). I believe in God and yes, I do believe in heaven or some type of existence that is beyond our earthly forms. I imagine being held again by my father. It's what has kept me going during many of my darkest moments. I have all my affairs in order ... will, healthcare directive, and financial documents ... that feels good. I've had conversations with friends and family about what I want to have happen ... but I think what scares me and what causes me anxiety is my unwillingness to simply surrender to what is meant to be. This morning as I was meditating I meditated on the 23rd psalm which has often given me comfort .... I repeated the psalm over and over in my head, and then read it out loud ....

The Lord is my Shepherd; I shall not want.

He maketh me to lie down in green pastures:

He leadeth me beside the still waters.

He restoreth my soul:

He leadeth me in the paths of righteousness for His name' sake.

Yea, though I walk through the valley of the shadow of death,

I will fear no evil: For thou art with me;

Thy rod and thy staff, they comfort me.

Thou preparest a table before me in the presence of mine enemies;

Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,

and I will dwell in the House of the Lord forever.

Only when I am able to completely surrender my will over to God am I able to feel peace in my heart. I struggled for many, many years to come to terms with a religion and a faith that violated a very sacred boundary of mine and ripped me of my innocence and trust. After decades of soul searching I came to the realization that God is in each and every one of us ... in all living beings. It wasn't God that violated that trust ... it was a human being. I can either choose to believe in a God or not. I can either choose to let  past hurts close my heart to fully experiencing life and love, or I can open myself up to living, to loving and risking And there are also many paths to the Divine, and we touch the Divine and experience the Divine in so many ways. For me, it's in moments when I open my heart completely and fully to love and be loved; it's in the eyes of my beloved animals (Ahnung, Missy and Mister); it's in the pleading eyes of animals needing to be rescued; it's when i'm touched by a wild dolphin; it's in a hug or an embrace; it's when I'm sitting quietly in a chapel, or in my meditation room; it's when I close my eyes, tilt my head back and feel rain drops on my face; it's when I look up in the night skies and see the stars and the moon .... 

So today I choose to place all my fears and anxiety in a small container and place them in the hands of God. I will step forward into the coming days (and tomorrow's heart procedure) with love in my heart and I will surrender my will over to God ... to the Divine ... I will trust that whatever is meant to be will be. I will welcome and embrace the love and prayers of friends of family.

"The light will always return to chase away the darkness, the sun will always come out again after the rain, and the human spirit will always rise above failure."

~ Harold Kushner

"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly. "

~ Buddha

Letting Go

Photo from Flickr

This is the longest i've gone without writing on my blog. So much has been going on, physically and emotionally. For the first time I simply felt the need to recoil, to be with myself and my feelings and to not share so much. But this morning I feel the desire to emerge. I have begun tapering off of my heart meds as I prepare for my heart procedure on Tuesday. The symptoms have been bad but they are getting worse now. I have been having trouble sleeping; my heart wakes me up in the middle of the night every hour or two; my body goes through spurts of feeling physically desperate for rest and relief. The last time I had a good night's sleep was March 14th.  I have been waiting for this procedure for 6 weeks and the time is finally arriving. I am normally not phased by surgery or any medical procedure. This time around I realize I am scared and I have anxiety ... maybe it's because I am exhausted physically, maybe it's because this procedure entails going into my heart, maybe it's because i've had bleeding problems, or maybe it's because I just haven't been so lucky in the health arena lately and I fear falling into the less than 1% of patients who end up with complications in this procedure. When I close my eyes and fall asleep Tuesday morning as they inject the anesthesia into my veins there will be a part of me that will feel relief because I will get to rest and sleep deeply.. something I haven't had the chance to experience for so long; there will also be a part of me that will be scared .. wondering and hoping that I won't fall again into the less than 1% of folks who have issues. I will imagine Papa holding me and protecting me. I will imagine Ahnung by my side. I will imagine the love and support of so many friends and family holding me up.

So early Tuesday morning a good friend of mine will take me to the hospital and she will wait for me as I'm undergoing my heart procedure. I've been told the procedure will take anywhere from 2 to 6 hours. That if the electrical problems are coming from the right ventricle (as they suspect) that they will be able to identify the source soon after they enter my heart with the wire and they will burn that area of my heart. If they discover I have electrical problems in my left ventricle they will then have to go through my heart and it will take much longer, and it may also mean that there is some relation to the left ventricular noncompaction heart disease I have. My doctor also says on rare occasions the source of the problem is outside the heart and in that case he said they won't be able to fix the problem as they will be inside my heart, and that a follow-up procedure/surgery will have to take place.

I am hopeful that this procedure will take away the symptoms I've had for the past 2.5 months and that I will finally be able to sleep through the night. I am having to practice letting go .... really, truly letting go. It seems as if i'm having to practice letting go on multiple levels and the irony of it all, is that when I am able to let go and loosen my grip on wanting to try to control some outcome or some part of myself, that I am able to find myself, find peace and to feel more alive than ever.

"To be fully human, fully myself,

To accept all that I am, all that you envision,

This is my prayer.

Walk with me out to the rim of life,

Beyond security.

Take me to the exquisite edge of courage

And release me to become."

~Sue Monk Kidd

Living on the edge

Photo from Flickr

I woke up this morning at 5 am to my heart doing what felt like major cartwheels and to my heart feeling like it was going to pop out of my chest as I struggled to get a full breath. "Is this it? Am I about to go into sudden cardiac arrest? Am I just overreacting? This will just pass. I don't want to make a big deal out of nothing. If this goes on i'll call 911" .... and on and on and on, my mind goes as I wait to see if I get chest pains, even though intellectually I know that women often don't get chest pain like men do. I don't know what a heart attack feels like, or the moments leading up to it? If I make the wrong decision, the consequences could be fatal ... I know that now. But my heart has been doing bizarre stuff lately and most of the time it's just gone away and I've been fine, so how do I know when I need to take action and really do something, i.e. get medical attention?

So I'm realizing this morning that it sometimes feels like i'm living on the edge, or walking on a ledge ... a ledge that's been created from the various bits of pieces of information fed to me along with symptoms my body has: I have an electrical problem in my heart (a pretty significant electrical problem) -- the doctors don't know what causes it; they don't think (but they're not sure) that it's related to the left ventricular noncompaction (LVNC) disease I have that's the cause for the weakening of the left ventricle in my heart. They don't know much about this disease so prognosis is uncertain. It's a serious disease that has been known to lead to sudden cardiac arrest. Electrical problems of the heart and arrhythmias are associated with LVNC. Yet my heart right now is functioning normal even though structurally there is weakening. The heart procedure at the end of the month will hopefully take care of the electrical problem in my heart. If it returns, however, it is most likely related to the LVNC. Physically, even though the beta blockers have helped and i'm at least getting some sleep (for which I am extremely grateful for) I can still feel the erratic beating of my heart ... the extra heart beats coming from my ventricle, where heat beats aren't suppose to start from.

I don't want to make a big deal about all of this. I want to keep living my life as normally as I possible. But how do I know ... how do I know when it's serious enough to call for medical help? Most of the time the symptoms just pass, and I'm okay. But what if I make the wrong decision? If only I could have a magic sign that flashes in front of me that says 'Marilou ... NOW you need to call for help! NOW you pick up that phone!'

This morning I took a gamble, and it worked out okay. My prayer for today, "God give me the wisdom and the insight to know when I need to act ... give me peace and comfort to not worry about every step I take and to trust in my life's journey wherever it leads me ... and fill my being with an acceptance and a true sense of gratitude for every moment I have."

To know, or not to know ... that is the question

On Wednesday I got a call from my doctor (the electrophysiologist). He wanted to give me the results of my latest heart test (echocardiogram). He also consulted with his colleagues to review my cardiac MRI and to confirm if they really believed I had 'left ventricular non compaction' (LVNC), a rare heart disease that apparently is found in only .1% of the population. The diagnosis of LVNC was confirmed. The echo revealed that my heart is functioning normally ... that's the great news! He indicated that structurally there is thickening of my heart muscle in the left tip of my left ventricle. That's the not so good news as it means there is some damage to my heart. At some time, it will begin to impact the functioning of my heart. The goal is to slow the damaging of my heart. For now, he wants me to begin aspirin therapy (once i get clearance from my hematologist that I don't have any bleeding disorders) and he says they will need to monitor me closely seeing me every 3 - 6 months and running tests to check the functioning of my heart and the progression of structural damage. He reminds me that exercise is good, but no competitive sports or races. The PVCs (preventricular contractions)/extra heart beats which have caused my sleep problems will be addressed at the end of May when I go in for an ablation. The beta blockers i'm taking have been helping for which I am extremely grateful. My doctor does not thinking that the PVCs which appear to be coming from my right ventricle have anything to do with the LVNC in my left ventricle. If they discover during the ablation, however, that there are PVCs coming from my left ventricle that could possibly indicate further deterioration of my heart and increased risk.

So how is all of this affecting me? I'm often asked that, and I often ponder that myself. Surprisingly, I am actually okay with it. This rare LVNC disease is something I have probably had all my life. Somehow, it's 'manifesting' now .... so now I simply know and am aware of this disease. I am also aware that this is a disease where there is so much the medical community doesn't know, and from what they do know, it's a disease with poor prognosis. The reality though is that it doesn't change anything because all I have is today ... all any of us have, is today and this moment. I have a choice on how I choose to accept this latest news. I am also very much alive today and in this moment. I feel very alive and nobody can tell me anything that will change how I feel on the inside. It doesn't mean i'm not cognizant that my heart, structurally, is weakening. But functionally, it's strong and I can keep doing things that will continue to strengthen my heart and my soul.

I admit that I have a new perspective on life ... I am putting everything 'in order' (it's something I should've already one!) ... I met with my estate planning attorney and before I have my heart procedure at the end of May everything will be in order. What an interesting exercise to actively plan for my death and to really think through what is important to me and the legacy I want to leave behind. I know it will give me comfort to know that I have all my matters in order. I also know that every morning when I wake up I am truly grateful .... and I thank God for another day. Today, I am even more grateful because  it is an absolutely beautiful spring-like day here in Minnesota and I have the day off from work to simply enjoy this gorgeous weather ...

"Go within yourself and probe the depths from which your life springs .... " ~ Rilke

My weary heart ... not just emotionally but physically

Photo from Flickr

So I meet with my EP (electrophysiologist) at Abbott Northwestern Hospital early this morning. Good news and not so good news. The good news is that the PVCs are coming from one area in my right ventricle. They are very frequent but my doctor says are most likely benign. The treatment plan: start on beta blockers and get scheduled for PVC ablation where he will go in to my heart and identify and isolate the exact location of where the PVCs are originating and ablate (or burn) that site. Because of bleeding complications i've had in the past and concern of my doctor of a potential bleeding disorder I have an appointment to see a hematologist tomorrow. My EP would like to know more about what the hematologist thinks and if I do have a bleeding disorder as that will change how the ablation is done. So for now, my ablation is scheduled for 5/31.

And the not so good news. The cardiac MRI done on Monday morning came back showing abnormality in my left ventricle. My EP does not think it's related to the PVCs in my right ventricle. In the medical world, it's considered an 'incidental finding.' I look at him and say, I guess you could say it was a blessing .. kind of like how my heart  PVCs were discovered as I was getting prepped for my MRI guided breast biopsy, and now how this abnormality in my left ventricle has been discovered because of my PVCs. He smiles ... "I guess that's one way to look at it -- a positive way." Then he goes on to tell me more about this 'abnormality' ... my report reads "Abnormal cardiac MRI: prominent trabeculation is seen in the apical third of the L ventricle, meeting criteria for noncompaction of the left ventricle." He goes on to tell me that this is a rare heart disorder, and affects only 1% of the population. He tells me though that he wants to consult with a few more of his colleagues to confirm the LVNC (left ventricle non-compaction) diagnosis and also wants me to have another test (an echocardiogram). Either way my LVNC diagnosis will be confirmed or I will be borderline and will need to be monitored closely. It's a serious disorder and prognosis is often fatal (severe heart failure, systemic embolism, arrhythmia or sudden death). They believe it's a genetic disorder. There's no specific therapy for LVNC but one that seems to help is aspirin therapy as those with LVNC are at greater risk of developing blood clots due to blood being retained in the heart. Interestingly, it appears that i've had problems with my blood clotting after past MRI guided biopsies.

So I sit here at home and the reality of all my EP has said is starting to sink in ... I am at risk of sudden cardiac failure. I guess, if i'm going to have to go at least it will be quick. I'm going back to the hospital for an echocardiogram on Friday. My EP wants another view of the abnormal area in my left ventricle. He also wants to see if and how much of my heart muscle has been damaged or weakened.

My EP was absolutely wonderful, thorough, compassionate and spent over an hour with me explaining everything to me and listening to me. He did his best to not scare me with the LVNC diagnosis but he also needed me to know the seriousness of this disorder. I wanted to ask him, "so how much time do I have?" But I decided not to, because the truth, none of us really know how much time we have left on this beautiful planet. Maybe it's a blessing that i've been made aware of how short and precious life is, and that my weary heart could go out on me any time now and I need to live life as fully as possible.

With this being such a rare disorder there unfortunately isn't a specific therapy .. there are drug therapies (beta blockers) and aspirin therapy ... the drug therapy is an attempt to strengthen and regenerate the heart muscle; the aspirin therapy to prevent risk of blood clotting. In the end, if the heart muscles are severely weakened then a transplant is an option. So on Friday i'll take a test to see just how damaged my heart muscles are ... for now my EP says no competitive sports, no marathons or even half-marathons. Yes, I can exercise but need to do so in moderation.

Today ... I am working from home and spending time with my precious Ahnung, Missy and Mister. My heart is weary ... emotionally and physically. But I am grateful for all that I have in my life ... for my friends, family, community ... and for knowing that each day I live my life with purpose and meaning.

There was a quote being passed around on facebook yesterday ... i posted it on my wall as it resonated with me on a deep level ... I need to remind myself again today, of this beautiful quote:

"Forces beyond your control can take away everything you possess except one thing, your freedom to choose how you will respond to the situation. You cannot control what happens to you in life, but you can always control what you will feel and do about what happens to you."

Victor Frankl, Auschwitz Survivor"

Weary heart

I just got home from the hospital and am taking the day off from work. I went in early this morning for my cardiac MRI. I slept last night but it was not a restful sleep. I've been taking 50 mg of Benadryl early enough in the day as I've learned that my body reacts within the first 3 - 4 hours of taking the benadryl (rapid heart beat, feeling a little faint and like i'm having an out of body/floating type sensation), but since i've been able to sleep through the night I figured it must be helping. I took the 50  mg around 4 pm yesterday as I had plans to go to bed early in anticipation of waking up early for my cardiac MRI. My heart started fluttering and racing. I've learned to just situate myself comfortably on the couch in the den and just lay there for a few hours with the pups till the crazy symptoms dissipate. A friend calls to check on me last night. She happens to be in the medical field and when i mention, in passing, my symptoms from the benadryl she immediately tells me that I have to stop taking benadryl. My heart is obviously having some kind of a reaction to it and i need to call my cardiologist and let her know what my symptoms are and if it's okay to keep taking the benadryl. So i have a call into my doctor right now. I don't know what's worse ... being sleep deprived I find myself feeling desperate ... desperate for rest and sleep, almost at any cost.

This morning as they got me ready for the cardiac MRI they did the usual insert a needle in my vein to get an IV started ... it's to push contrast in my body half way through the procedure. They also attach an EKG to my chest. The nurse tells me i'm having a lot of PVC (preventricular contractions). They continue to monitor my heart for a little bit. I go in and out of PVCs with some major clusters of PVCs. The nurse asks if I can feel the PVCs? I tell her I can now. A few weeks ago I couldn't but I notice them throughout the day now and at night when i'm unable to sleep. Because i'm having so many PVCs they administer a drug to override the PVCs for the MRI. I lay face up and they put headphones on me and they ask if i'm ready ... "you'll be more comfortable if you close your eyes" the nurse says to me as I start sliding into the tube. I close my eyes and as I move further into the tube I can feel the air tighten around me. I take a deep breath to calm myself and to call the dolphins into my heart and my head. For 40 minutes I am in the tube, laying completely still and following instructions of when to breathe and when to hold my breath. And when the contrast is inserted into my veins I feel a cold fluid rush through my body and in minutes my body starts to shiver. I tell myself 'one last round of images Marilou and you'll be done ... think dolphins, think warm water in the Bahamas.'

My cardiologist has pushed for the MRI to be done more than a month in advance and for me to meet with an electrophysiologist on Wednesday because I have become very symptomatic. I feel the irregular heart beats, pretty much all day. I've been unable to sleep at night until just a few days ago when I started taking benadryl (but now am not sure if I can continue to take benadryl). The PVCs are uncomfortable but they're tolerable in my waking hours. Part of me wonders if it's just in my head and i'm just noticing it more .... this morning confirmed for me it's not in my head. I'm having frequent and significant clusters of PVCs.

I'm glad I have the day off from work today ... my heart feels tired today, emotionally and physically. My body feels tired.

Reaching deep into my roots ...

It's been a while since I blogged ... i am fortunate to have friends and even kind strangers from across the globe follow my blog, so I decided I needed to post an update even though I am tired and my mind and brain feel like they are barely functioning. I am always appreciative of the kinds words, thoughts and prayers and deep down believe that we are all connected, somehow, some way ...

First the good news! The two lesions in my breast were biopsied (or at least samples of the lesions) and were BENIGN!! There were early signs of cell proliferation but not enough for my surgeon and doctor to recommend a surgical biopsy so for now I get a 6 month reprieve till I have to return for a follow-up MRI. If the lesions are still there they will need to be removed. The bleeding issue that resulted after the MRI guided biopsy is of concern to my primary doctor so I have an appointment scheduled with a hematologist for next week.

My biggest issue right now continues to be my heart and not being able to sleep at night. It's now 29 days since I first had sleep problems. I've gone back in my journals and health diary. It was the Monday after I returned from a weekend workshop in Virginia (3/14) and 4 days before the first attempt to do the MRI guided biopsy. I wasn't even aware at that time that I had heart problems. I just remember waking up every hour or hour and a half. I brushed it off to 'worry' or anxiety or who knows what. But it persisted every night, and has persisted every night since then. Some nights i'm fortunate and only wake up about 4 times and am able to fall back to sleep fairly quickly. A month ago I would say I was minimally symptomatic; even two weeks ago, it wasn't bad. I noticed the palpitations but they weren't bad and I could live with them. Mid May for the cardiac MRI and appointment with the electrophysiologist seemed a way off but based on my symptoms I was okay with it. This past week or so the symptoms have gotten worse - not only do I feel these strong heart palpitations at night (which often wake me up) but I feel them during the day. My strategy of cat naps during the day no longer are working and as the days and weeks string together where I am unable to sleep without interruption I feel my body weakening. Desperate for sleep this past Saturday I broke down and took some OTC Nyquil cold medicine. My body does not do well with drugs and although I got some sleep I woke up many, many times and in the end did not feel rested as I slipped into what felt like an out of body experience, and the irregular and increasingly strong heart palpitations would jolt me awake.

I asked my cardiologist to reconsider the heart meds. Sleep deprivation is making me feel desperate ... desperate for sleep; desperate to try anything to get rest. My cardiologist tells me I'm not a candidate for the heart medication as my resting heart rate and my blood pressure are already too low and the meds will lower them even more. I don't care, I say. I know i'm not thinking clearly. I need to get in to see the electrophysiologist sooner. She is working to get me in to see him next week. My cardiac MRI has been re-scheduled for early Monday morning. How long can I go on without sleep, without uninterrupted sleep?

Last night I just wanted to cry. I was so tired. I tried to take a nap in the late afternoon. I normally don't sleep with my pups ... I broke down and let my dog Missy on the bed with me thinking it may help me fall asleep. The only one who fell asleep was Missy (and Mister too!) ... nonetheless, it was nice to snuggle up with Missy who thinks she's a person as she loves to lay her head on a pillow.

I am grateful for the incredible friends I have and all the support I continue to get from such a loving community. And today, I am especially grateful for a new love in my life ... a message early this morning on my cell phone "hi sweetie, just wanting to see how your night was" ... and the daily calls (actually several check-in calls a day) to see how i'm doing and if i need anything, and then an hour ago he stops by on his way back to work to drop off some hot food and OTC meds that the cardiologist recommends to help me sleep ... a hug, a kiss an embrace. I tell him that the best medicine for me right now and what is helping me through all of this are the unconditional love of my dogs, his love and support and the love and support of so many of my friends and family.

I have reached deep into my core and done so much work and healing emotionally ... it's ironic that as I have opened up my heart to love and to allow myself to be loved, I am now here having to deal with heart issues. I wrote a letter to my heart the other morning while i journaled asking her what she needs from me ... "dear Heart: I hear your cries. I hear you. I feel you. I notice you. No longer will I push you away or build walls around you. Please tell me what you need or want from me....." I have spent decades trying to keep my heart safe. Now, even with these heart issues, I know that I have never felt so alive ... so full of life, so full of love.

I reach deep into my roots for strength, for courage, for hope. And I reach outward to accept the help, love, support and encouragement of so many who bless me with their presence in my life.

Courageous heart ...

Photo from  Flickr

I was recently told that I have a "courageous heart." I must confess, that these past 24 hours that I haven't felt like I have a very courageous heart, yet I know that often courage comes when we can acknowledge and embrace our fear. I met with my cardiologist at the Minneapolis Heart Institute yesterday. Another EKG was done and confirmed the premature ventricular heart beats I have been having. My doctor tells me that in a 48 hour period while I was wearing a holter monitor I had approximately 200,000 heart beats, and of those heart beats 53,670 were irregular. It's essentially an extra heart beat that starts in the lower chamber of my heart (ventricle). It's apparently not supposed to start there and it throws out this erratic heart beat which appears on an EKG as a major spike. She goes on to say that means that close to 25% of my beats are premature and irregular. Occasional irregular heart beats is common and nothing to be concerned about. Anything less than 10% they may just monitor and try to manage symptoms if there are symptoms. In my case, she says, we have to find out what's causing it as i'm over the threshold of 10%. Although my heart appears to be strong and sound structurally right now, these frequent irregular beats will damage my heart. Electrolyte levels can be a cause. That was ruled out as they tested my magnesium and potassium levels. I don't drink coffee (i have one cup of caffeinated green tea in the mornings), don't smoke, or consume any alcoholic beverages ... I have a very healthy diet, "slender" (the doctor's words) and exercise ... these all work in my favor she says.

So next step is a cardiac MRI and a meeting with an electrophysiologist. She tells me that sometimes what causes electrical problems in the heart is scar tissue or damage to heart muscle tissue. They will be able to see that with the cardiac MRI. If they find an area that is damaged that may be interfering with the electrical current and flow in my heart they will do what's called an ablation and remove the damaged/abnormal tissue. She mentions a medication that is sometimes used but in my case it won't work as I have a low resting heart rate and this medication often lowers one's heart rate. She did give me the go ahead to proceed with with the breast MRI guided biopsy so I have that re-scheduled for Monday afternoon. By next Wednesday i'm hoping i'll have the results from the pathology report and will know what the next steps are concerning the lesions in my breast.

My precious Ahnung

For the most part I think i've been handling the stress of all these health issues pretty well ... yesterday while meeting with my therapist I broke down though and cried. I guess it's more scary that i've been willing to admit. Even before I knew I had heart problems I started having sleep problems -- waking up every hour or hour and a half throughout the night. I didn't know what was causing it and brushed it off to worry or "something." In some ways it helps to know it's the palpitations in my heart that are waking me up. It's been about 2 and a half weeks now since i've had sleep problems. The symptoms get worse at night. Often times I feel like my heart is going to pop out of my chest. I lay in bed at night and I wonder how i will know if it's time to call 911 or take myself to the emergency room. Can I just sleep it off? I've learned to live with the symptoms ... they're tolerable and don't stop me from functioning and going about my day. My cardiologist has a stethoscope next to my chest. She asks "do you feel it?" I say "yes." She nods to affirm that she can hear the irregular heart beat. It's persistent and constant now. I wake up every morning now with an immense sense of gratitude for the gift of another day. As nights of restless and interrupted sleep string together I do find myself getting even more tired and fatigued. I find myself not feeling as brave and able to take on all that life has thrown my way ... but in my darkest moments, I always look to my precious dogs and I smile. I will continue to fight and I will continue to trust in God.

As I continue to prepare for more medical tests and procedures and waiting, I found myself reading one of my favorite quotes over and over this morning:

"I want to ask you, as clearly as I can, to bear with patience, all that is unresolved in your heart, and to try to love the questions themselves, as if they were rooms yet to enter, or books written in a foreign language. Don't dig for answers that can't be given you yet: you cannot live them now. For everything must be lived. Live the questions now, perhaps then, someday, you will gradually without noticing, live into the answer."

~ Rilke

I carry your heart

Photo by Angie McKaig from Flickr.

As I was perusing through Flickr photos in search of a heart photo, I came across the photo on the left. And along with the photo was the posting of a poem 'i carry your heart' by ee cummings. I immediately thought of my dogs Ahnung, Missy and Mister. I imagined my heart being wrapped by their paws, by their unconditional love, by their belief that everything would be okay.

I met with my primary physician yesterday to discuss the results of my heart tests. On Tuesday I took a stress/echo cardio test and was told that it was 'normal.' The abnormal rhythms (ventricular bigeminy) were only happening while I was at rest. Once on the treadmill and exercising it went away. And no blockages found in my heart and that structurally it appeared that my heart was normal. So that was the good news. Somehow I knew though that what was of more concern would be the results of the holter monitor that I wore for 48 hours last weekend - it would capture every heart beat of mine in a 48 hour window and would be able to tell doctors just how often my heart was going into these abnormal rhythms. So yesterday morning I met with my doctor. I've been seeing her for 10 years now and we have a great rapport ... as she comes into the office and sits down she looks at me and says, "I got a copy of your holter monitor report from the heart center. You have a zillion irregular beats! ... okay, thousands!" She knows I always joke around with her. I ask for a copy of the report. She returns with the summary page and says, "I knew it was a lot and was thinking it was 5,000 irregular beats, but I was off by a zero. You had 53,670 irregular beats in a 48 hour period and a majority of them were ventricular bigeminy (meaning every other beat ) ... and you also have some couplets and triplets where these irregular beats are in succession." She goes on to tell me that I need to followup with a cardiologist and most likely an electro physiologist (a cardiologist who specializes in the electrical portion of the heart). Occasional irregular heart beats is common and nothing to worry about, she says. Mine, however, is pretty severe. Essentially, my heart is beating from the 'wrong' place (starting at the ventricle) almost every other beat. She said it is what's causing why I some times feel light headed and need to sit down. It's also what's causing the palpitations and probably waking me up in the middle of the night. It's also why my hands and feet are cold as the blood isn't being pushed through my body efficiently; it's probably also what's causing my fatigue. She says that she would want to know that with this level of severity of ventricular bigeminy does that put me at higher risk of ventricular tachycardia (which could then lead to cardiac arrest and sudden death)? I confess to her that I've learned to adjust to the symptoms of palpitations, fast heart beat and light headedness and have simply brushed it off in the past. Until I know more about what's causing the electrical problem in my heart I know I need to be more diligent about not only noticing my symptoms but not disregarding them. I assured her that if I felt chest pain, shortness of breath or even if something just didn't feel right, that I would call 911 or get myself to an emergency room.

So for whatever reason my heart is not functioning 'normally'. The two suspicious lesions found on an MRI remain in my left breast and the MRI biopsy is on hold now until my heart issues have been resolved or at least understood and I get clearance from a cardiologist. In many ways i've mentally and emotionally prepared myself for the big 'C' word ... Cancer .... I hadn't really thought about the possibility that my heart would simply give out. I guess the reality is, we never know when it will be our time, but I admit that I am much more aware of it right now as I feel the palpitations in my heart. I hear my doctor's words at Mayo as we were talking about cancer ... "we don't really know what sets of cancer." I hear the words of the doctor in ER last Friday, "we don't really know what triggers someone's electrical heart patterns to shift."

For now I am simply grateful for every new day I have. I meet with a cardiologist at the Minneapolis Heart Institute on Tuesday morning and will know more about what is going on with my heart and what are the next steps/tests I need to take.

I can feel the unconditional love of Ahnung, Missy and Mister as they wrap their paws around my heart. I feel the support and love of friends, family, health care practitioners and community.

I choose to live life fully and to risk loving, falling in love and having my heart broken. Because if today, or tomorrow were to be my last day I want to know that I gave it my all and that I loved with reckless abandon and that I lived a life of passion and purpose.

and to my sweet Ahnung, Missy and Mister ... thank you for carrying me in your heart :)

i carry your heart

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life;which grows

higher than the soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

-- ee cummings