Gloria's Journal

Things are shifting and the heart journey may have just hit a new milestone. The aortic stenosis is progressing. After several years of watch and wait, my numbers on my chart are changing....all I can do is wait until my appointment. Research done. Still

I just had echo this past Thursday. My aortic stenosis is progressing, and will be going back in for my follow-up appointment sooner than scheduled. I know I am most likely looking at another TEE procedure. The first was easy, so not worried. What I am freaking over is the heart cath. I just cringe at the thought of them cutting into a vein that flows into my heart. The cutting in such a sensitive area, and it possibly getting infected or not being able to stop bleeding makes me weak in the knees literally.

I am most likely getting closer to a surgery date with my surgeon. I am still not 100% at peace with that either. Baby steps. I have done all the research I can and know what is involved, but for the last 6 years or so have just kept my appointments every six months and fully expected a no change in my report. Instead the guy doing the echo started firing off questions in quick succession...like you haven't passed out recently have you? Are you dizzy? Any pain anywhere or squeezing in the chest? After the echo..he usually tells me to get dressed and he goes back to his desk, and finishes paperwork. This time he stepped outside and was at the nurse's desk talking to scheduling to see if he could get me back in quicker than April 11th. Would I be okay going to their other office next week? By this point I was a little nervous and said I would be comfortable staying right there and talking to the Nurse practitioner or another doctor (mine on vacation this week), and is scheduled for surgeries all of next week. So I am awaiting a call. He told me 2 weeks ao he may do another TEE as I had been short of breath and had more foot swelling. Have started to feel a slight squeeze at the top of my heart. Not bad or excruciating, but perceptible even when at rest. He mentioned heart cath too. Oddly- right now I would just as soon skip that part and do the surgery if warranted. Crazy,,I know, but just don't want to put my body and heart through it.

I am sure that won't be an option if he orders it. I just have a gut feeling that I am about to step through another door in this journey. Yikes.

Thanks for listening, any info on your personal cath experience may put my mind at ease on this issue.

Glo

I have had this profile up for awhile (a few years) and tend to just look in once in awhile and also post sporadically.

About 2 months ago, I noticed that my hands and my feet and clothes started to fit and feel differently. One afternoon I looked down at my feet which seemed to grow 2 sizes in girth and realized that even some blood vessels seemed to be broken. I kinda got worried and called my doctor a month and a half ahead of my scheduled 6 month appointment.

I have been on a watch and wait every 6 month cycle now for the past year to year and a half. Was told to call if anything seems out of the ordinary or changes with my body, etc. Well they put me through the battery of tests and even did a test of running a Doppler on both of my legs this go around.

Results showed some leaking of veins in one of my legs- not bad, but it is there. The Aortic Stenosis is progressing and with all the tests back in, my doctor looked at me and plainly said- you will be having open heart surgery within the next year. That was about a month ago. They fitted me with some really lovely support hose and sent me on my way.

Well to tell you the truth.....I am scared to death of all of this. I am also having issues with my breathing (I had been diagnosed with Sarcoidosis back in 2008-2009) and had to go through a bunch of treatments for that. I was told it was in remission or possibly it would not come back. Very scary time back then. It also affected the right side of my heart and left me with a Right Bundle Branch Block- which is the electrical firing of the heart on the right side and at some point in my life may have to look at a pace maker. During a routine physical I was told about that, and had to follow up on that back in 2010 with my current Cardiologist. As they did a full check on my heart- they found a Mitral Valve issue (minor) and also the Aortic Stenosis. Was mild to moderate then but now severe, but ejection fraction not where it needs to be to pull the trigger on surgery yet. So I get to wait.

For past year or two have had a hoarse and raspy voice. I tell doctors about it, they give me Symbicort to help with asthma conditions (which I am not currently diagnosed with) but helps with the breathing ease of it etc. It feels like I am sometimes drawing breath through a Tyvek envelope or a piece of gauze. Very scratchy and heavy, and also at times wheezy. I have grown used to this most of the time and rarely am aware of the wheezing. I can feel and hear it at rest at night sometimes, and sometimes I wake up and that is the first thing I hear. So about a week ago- had gone to a friend who is a Doctor of Acupuncture and other Chinese Medicine. Trying to get some swelling in my knee and in my feet to go down. At one point she asked me why I was wheezing. I couldn't hear it, but she said it was very audible to her. I was sitting quietly on her table. At rest. That moment has been really weighing heavy on my mind these past few days. It caused me enough to concern to dig up new information on Sarcoidosis and to search terms like wheezing and moist wheezing sounds and hoarse throat. I have experienced all of this off and on for 2 years or so. Laryngeal Sarcoidosis comes up. It can be a secondary attack on my lungs- based upon the findings and research.

I had to give blood today and made sure they contacted my Cardiologist to get his last findings and report, so when I go back in there in a week to discuss my bloodwork results, I can bring this up. I feel like a guena pig- and on a never ending treadmill. I am sure he will have me going back to my pulminologist, getting another run through his wringer washer. If I don't I realize that the strains pit upon my already ailing heart can amplify quickly to dangerous levels and it could become life threatening for me.

I say all of this to also add- this past summer- my brother who was a year younger than me (I am 55 years old) went to the hospital with chest pains. To my knowledge he never had any issues. Once at hospital- he was diagnosed with 3 major blockages. They had to do surgery- 2 blocked 100% and 1 blocked at about 80%. He was put into surgery- once in there they found part of his heart was already severely damaged by a previous heart attack. He did not mention having one to the doctors caring for them and they said it was possible that he had one and didn't realize that is what it was. and just kept going. They said the repairs and surgery went uneventfully. After surgery- he never regained consciousness at all. Two days later a brain scan showed a cloudy mass and no electrical activity. I had to make the hard decision with his ex-wife to pull life support from him. This was this past August. Just a few months ago. Our Father had a triple heart by pass and had many other health conditions. He passed away in 2010- in his late 60's from congestive heart failure, glaucoma, severe neuropathy in both of his feet and was a diabetic.

As you can see, I have some really crappy genetics I guess. I am pretty concerned and worried that I may be heading down this pathway too.

I can guarantee I will not take any of this lying down, and despite some of the wonderful people involved in my care team, I am all over the ones who seemingly drop the ball and not write things down, or seem a little too cavalier in their approach and bedside manner. This mornings blood draw- while still a nightmare- I get stuck 2-3 sometimes even 4 times so that they can find a vein, I laughed and joked with the nurse. Sometimes if the one doing the blood draw is aloof or doesn't seem to understand the trauma of getting myself stuck for the umpteenth time just this year alone- then I am not so nice. I hate to say it , but I will most likely be a pain in the ass heart patient. I will want to be told things and understand things and will have a list of questions at my appointments. They will be (Doctors, Nurses and the like ) forced to look at and treat me as a human. I will have glitter and hearts adorned to my chest and back- so when I am not able to communicate on my own behalf- that they will see a human being there not just a number or another name on a chart.

For me it is the only way. My thinking and writing seems a but disjointed and fragmented today, but I wanted to get these thoughts down. Been sitting here in Starbucks with the younger generations tapping into the energy and the good coffee smells. Plus I have had my own treat- a reward for the morning I have had with needles, worry and just not wanting to go back home yet and hibernate. I am fighting that somewhat these days. It is easier to stay at home in your yoga pants and shirt with no bra........and surrounded by my fur kids. But- I am fighting a simmering sadness and heaviness and know that to stay engaged and plugged in somewhat....I won't let the sadness control my life.

Perhaps maybe I will write more later...........for right now I just want to say that my FEAR can go 'F' itself. That is all.

Happy New Year to all of you.......hope those that are scheduled and are having surgery this week, all goes quickly and your healing is pain free.

Wishing all who have surgery this week a speedy recovery. Sam, Laura, Cheryl, Mindy and Angela. :)

Love this art piece.

Saw my cardiologist today- they now have me on 2 meds for blood pressure- Atorvastatin and now Carvedilol- my BP topped out at 194/103 last week, and went to ER. Was a full blown anxiety attack. After coming home tonight and looking over papers from him- Will be having another stress test (2 day) mid September. 1 resting test and then actual treadmill test. I am also noticing on his recap of diagnosis a thing called Peripheral Venous Insufficiency- date next to it says this was noticed or diagnosed in 2012- but cannot recall that being part of my worries or discussions at the time. All the other stuff is still there with the heart valve issues, etc. But this is news to me. Anyone have Peripheral Venous Insufficiency? What do they do about that? Anything on this site about that? Geez Louise- thought I had enough to think about, now I have a new thing to add to the worry list. I am gonna need a bigger dammnit doll. :) Seriously- I am not fond of taking three different meds now- 1 cholesterol I have been on for several years, and 2 BP drugs. I am rejoining my local gym- got to get back on the bike- Florida weather is too humid and hot to even think about going outside for a walk. Just feeling crabby.....but thankful I have insurance to stay ahead of the curve and have these procedures done.

Question for Adam: I would like to think I am a possible candidate for the Ross procedure when it comes time for Aortic Valve surgery. I have a severe regurgitation and stenosis in the Aorta. Also have a mild leak in my Mitral Valve and my Pulmonic Valve too. Does having a mild leak in the Pulmonic valve eliminate this option for me or can they do any slight repair to the Pulmonic valve and locate it in place of the Aortic valve, then install a pig or homograph valve in the Pulmonic valves place with good results? I feel like I almost know what the answer is, but instead of thinking the worst, felt like this question may be of interest to others in our community. Maybe this is a question for the next Heart Conference. Thanks for always keeping us informed on the latest heart developments. Hugs from my heart to yours. Glo

Haven't been on this site too much the past few weeks, as I have started a new job in an industry I love. I am in training and my hours are a little wonky and also getting overtime right off the bat. All good stuff.

The other cool thing is that I started during the company's open enrollment period for insurance- so having to decide what I want for Medical, Dental and Vision, also STD and LTD benefits and anything supplemental. While I am insured by my husband's insurance work policy, felt that knowing I would be facing some major costs in the next year or two for my heart, this would provide an added sense of relief financially and some sense of mental relief knowing I have the ability to have a back up plan B in the wings to cover any other costs and also be able to have some other benefits to support us for any unknown's around the bend of this path I am slowly walking down. It is definitely a relief.

I called Dr. Kevin Accola's office today (My future Heart Surgeon) to be sure that both of my policies are able to be utilized in my care. Yes, all is good there. Both times I have called there the staff always gushes and tells me how awesome he is, and I direct them to to tell him Hi from Glo (future patient) and give him a hug. They said they will. :) Also have checked the hospital where he does surgery- all good as well with my benefits. Yeah again!!!!! :) It's a great feeling that I have some pieces and parts of this puzzle already in place, so when the cardiologist says it's time to call in Dr. Accola, I will feel ready and some of the unknown is already in place. That thought brings me comfort in ways you cannot imagine.

So I have to see my cardiologist September 11th, to do a check in- check up again. That will be 3 months past my last one when he told me my Aortic Regurgitation is severe. Stenosis is moderate, and the Mitral Valve and Bicuspid valve is mild. The last meeting in June- and just left his office not feeling totally confident in his bedside manner and his casual approach in talking to me and my husband that afternoon. It also doesn't help that my husband thinks that doing this early research and worrying is helpful to me, he interprets my taking action as I am itching to do surgery and upend my life with worry. Of course I explained that I do not ever want to be in the position again sitting in a chair in a doctors office where they start throwing all the curve balls and scary words like Biopsy, possible cancer, liver biopsies, lung biopsies and then having my lung collapse on me during a procedure trying to diagnose the mass in my lungs (2009) to determine what was going on....waiting the days with a chest tube for them to come in and tell me what kind of cancer I had, etc. I was single at that time, by myself and too many other life things coming at me at break neck speed....ultimately I was diagnosed with an auto-immune that affected lungs and other organs and ultimately my heart (Right Brundle Branch Block) which led me to see my current cardiologist for follow-up which ultimately led to my diagnosis and revelations of the other heart things I have going on back in 2010.

So- do I want to avoid surgery? Heck yes....if I could. After finding this site, this wonderful community and all of it's resources, and ultimately the best Surgeon for me (Dr. Accola does lung and heart procedures and I feel so fortunate to be in the city where his practice is and not have to travel far) so I can receive the best care. I have ordered Adam's book last month and have put it in my husband's hands so that he can educate himself- have asked and sat with him to watch the videos of Dr Accola and other procedures on this site....he still feels that I am trying to fast track things for myself......I feel that I am doing what I need to do. He is not a planner, and typically is very laid back, loving, but flies by the seat of his pants when dealing with important life stuff, and makes me crazy sometimes with his slower , wait and see approach to things. I feel like sometimes with him and the rest of the world, I find myself having to down shift to a slower gear to communicate. I am an action taker....I hope and pray that as I watch and wait my options for minimally invasive surgery are more possible. Due to my age (54 years old) and from what the cardiologist says I will have to be choosing a mechanical or pig/cow valve.....that technology is on my side and catches up to allow me more choices.

I know it's not a matter of maybe, it is going to happen. Aortic Stenosis and a severe regurgitation is not going to just magically disappear on it's own. A Ross procedure is not a probable option since my other valves (including the Pulmonary and Mitral have Regurgitation as well so using one of those to repair the Aortic is is unlikely). How do I know all of this and feel so confident in my approach? How did I already tell my Cardiologist at my last visit that I have identified the surgeon of my choice for any future surgery to be Dr. Accola? How did I stop him in his tracks as he gave me the same old watch and wait commentary and started asking intelligent questions using terminology and information about my condition? Finding and being a member of this website.....has been a blessing and a gift for me. I have even been able to share it with another friend in the last few weeks that is now possibly looking at heart surgery as well in the next few years.

Sorry such a long post.....but just had to vent and talk a little, perhaps someone will find my comments helpful or identify with some of my story. It feels really great to be here and able to just put my feelings into words and know that you all get it, get me and understand the fears and swirl of emotions surrounding all of this 'Heart-Stuff' we all share.

Hope all of you have a great day and all members who are prepping , starting or having had surgery this week great healing and much love as you continue on.

Hugs and Peace
~glo

Happy- just ordered the book. Actually feel a sense of calm. Doing everything I can to educate myself- this website and resources is the best by far.

So this happened today....got a new car last month....she's a little spitfire. I named her Miss Fierce....then decided to put the heart pulse and a left to center heart into the mix too........my little version of a vision board or a positive way to set m

Got over the fear and limiting beliefs today about contacting a surgeon. I want to feel empowered and in control to a degree in all of this stuff I cannot control- so wrote a note to Dr. Kevin Accola and introduced myself and told him my story. Sent latest ECHO results and asked him a few questions. He might as well get to know me now, and what he may be in for. :) Here is latest report from my regular cardiologist. Sent this and some additional info below to Dr. Accola.


Conclusions form last Echocardiogram done on 6/2/15
Left ventricle systolic function is normal.
Trace to mild mitral valve regurgitation.
Mild Aortic Stenosis.
SEVERE Aortic Regurgitation.
Trace to Mild tricuspid valve regurgitation.

Findings:
Left Ventricle: is normal size. There is no thrombus. There is normal left ventricle wall thickness. Left ventricle systolic function is normal. The left ventricle wall motion is normal.
Right Ventricle: Right Ventricle is normal size and function. There is normal right ventricle wall thickness.
Left Atrium: The left atrium is normal size.
Right Atrium: The right atrium is normal size. IAS appears to have no gross abnormalities.
Mitral Valve: The mitral valve is flexible without restriction. Trace to mild mitral valve regurgitation.
Tricuspid Valve: The IVC is normal size and collapses without inspiration. The tricuspid valve is flexible without restriction. Trace to mild tricuspid regurgitation. Normal estimated right ventricular systolic pressure.
Aortic Valve: The aortic valve is sclerotic with reduced excursion. Mild aortic valve stenosis. Severe aortic valve regurgitation. The aortic valve regurgitation is eccentrically directed.
Pulmonic Valve: The pulmonic valve is flexible without restriction. Trace to mild pulmonic valve regurgitation.
Aorta: The aortic root is normal size.
Pericardium: There is no pericardial effusion. The pericardium appears normal. There is no pleural effusion.

I will also note: Due to a bout of Sarcoidosis in 2008-2009 (now in remission or no further issues) after 18 months of steroids and other meds. I had an ekg that showed a Right Brundle Branch block that was not there prior to this diagnosis. Do have some diminished lung function that affects my abilities for physical exercise. Get short winded easily.

me