Gloria's Posts

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.