Melissa's Journal

Today makes 6 wks since the surgery. I would say that the healing process was pretty normal. Still have some stiffness and pain, especially if I just sit around. Moving is important. Rehab has been uneventful. I feel my best after I\'ve been there. I have had some issues with some arrythmias for which I wore a holter monitor for 24 hrs to see if it would pick them up. Kinda like taking a car into the shop cause of a squeak...never squeaks when you need it to. I have yet to hear the results but I can say that the episodes I was experiencing have stopped. So thats good enough for me. I return to work Monday. Unfortunately thats all my FMLA would allow. I will not go back to my normal 12 hr shifts just yet. I\'m too tired and sore by the end of the day to keep working till 8p-9p. So my days will be shorter for a while. Almost all of my symptoms I was experiencing are gone. The ones that are still there are so mild and disappear as quickly as they come. I know that when your heart has CHF, it can take up to a year for the muscle to recover and work properly. But there are days when the pessimism overtakes me and I\'m afraid that the surgery didn\'t fix the problem. Then logic takes over and I realize that I\'m not on oxygen anymore and I can do an hour in rehab without passing out. I couldn\'t even walk down the hallway of the cardiac wing without fainting before the surgery (true story). Thank you to all my HJV buddies who supported me through all of this. It was an incredibly long and frustrating road. But I thank God for the support I found here and for leading me to my Dr and the surgeon who performed the operation. It may not have been the minimally invasive I had hoped for but I am fixed and everytime I look in the mirror and see my scar I\'m proud of it and I know that I\'m a 32 yr old survivor. My one and only piece of advice for any reading this is listen to your body. You and only you know when something is not right. Medicine is science...every once in a while you find a Dr who takes that science and practices it as an art. Look for that Dr. It took me going through 4 Drs in 3 yrs to find the 5th Dr that stopped looking at the science of it. My heart goes out to those facing surgery. The particulars can be scary but just keep looking towards that light at the end of the tunnel. You will reach it. ~Melissa~

Just a quick note to let all my wonderful supporters that the surgery was successful. Some of the things I was most worried about I do not even remember. Some of the other things I was concerned with proved to be a real challenge. But its done and over with now. So many of my syptoms have subsided and the pain and uncertainty has all been worth it.

I had a request for an update. So here it goes. I left the hospital on Sept 22nd, 24 days after being admitted. My hemoglobin was still only 11.7 and not the sufficient 12 the surgeon wanted. So I asked to go home and finish the wait there. They got the oxygen set up at home and that pretty much was the stipulation to going home...I had to have the oxygen on anytime I moved. I went back to see the cardiologist on the 29th and I had finally hit 12. Monday the surgeon called with a surgery date of this Fri the 7th. I did all my pre-op stuff today, which consisted of bloodwork, xray, ekg, and a training session with the respiratory therapist. And now everything is finally starting to sink in. Theres a constant anxious feeling in me. You would think that it would be the longest week of your life getting to the awaited surgery day but these last few days have flown. I just try to think about the triumphs I will have after the healing process and restrictions are lifted. Who knows how long this has been affecting me or how much I\'ve grown accustomed to as being normal. I probably won\'t update my journal until I\'m out of icu. So at least this weekend. But as soon as I\'m up to it, I will drop a few lines to let you know how it went. Thanks to all for the support I\'ve experienced through this rough time. It has definitely been an interesting road getting here filled with too many frustrations to count. But it was so comforting to have people who had the same rare heart problems going through similar frustrations but finding their light at the end of the tunnel...a much needed inspiration. Good night to all my HJV friends and see you at the end of the tunnel.

I have now been in the hospital for 20 days. So many issues with my insurance not wanting to pay for the meds outside of the hospital. So many times I thought I was going to get to go home till the surgery. But blood count is rising nicely now and should be at the target 12 by Tuesday when they plan on doing the next draw. If all comes back ok, I am on the books for Wednesday. Please all keep your fingers crossed for me. This has been such a ridiculous journey that I will happy to be done with. I will update again Tuesday.

Still waiting it out. I\'ve been given 4 injections of the super drug that will help build my blood. Blood count as of yesterday was 10.6...goal 12. They will recheck my count tomorrow. But because the drug has to be administered daily, they have decided to keep me in the hospital. So this is now day 12 with no end in sight. I\'m hoping after the weekend my count will be up enough to get me on the surgery schedule for Tues or Wed. Fingers crossed.

Because of a low blood count, I will know tomorrow whether or not surgery will proceed as planned or if it will be postponed for 2 wks. If postponed, I will be given the Epo shot daily to stimulate my bone marrow to produce more blood and sent home with oxygen to wait it out. Tired of all the obstacles. Ready to get the show on the road. Signing off till tomorrow

Wham bam...surgery is scheduled for Wed Sept 7. I have an absolutely wonderful dr here and a surgeon I feel confident with. They said it cannot be done minimally invasive...at least they don\'t practice minimally invasive AVR here. So I have come to terms with the scar but am very nervous about the ventilator and the pain. My mom had the same surgery 30 yrs ago and I\'ve heard all her horror stories. So I\'m just a little bit nervous about those things in particular. Sawing me open is not a worry, stopping my heart doesn\'t scare me, but boy the after has me scared. So I will be laying in this hospital bed for the next 10 days seeing as how they are not letting me leave. They feel I\'ll wind up in distress and back in the e.r. before Wednesday and best to keep me here until then. So for now, I\'m just watching the wallpaper.

So after yet another er episode they admitted me to the hospital to be observed and to consult with the cardiologist that works at this particular hospital I went to. FINALLY someone who also agrees I shouldn\'t be feeling the way I\'ve been feeling. So the heart cath is scheduled for tomorrow afternoon. The dr talked as if the surgery will be done by the end of the week. So I guess we will know better tomorrow the plan of action.

Today was interesting to say the least. I started out the day short of breath and coughing off and on with a few bouts of dizziness here and there. By the time I got to the hospital I was extremely winded just from the walk in. I got into the ct scan, which of course you have to lay down in...which of course I can\'t do at the moment. By the time I was done the room was spinning and I had to sit on the edge of the bed for a few minutes before walking. The tech walked me out to Matt and we sat for another 10 min trying to let the severe dizziness subside. I eventually got up and made my way outside only to faint in the parking lot. Fortunately Matt caught me, got me back inside and the tech put me in a wheelchair and got me over to the er. I was there for about 6 hrs. But the dr came in with the results of the scan: my root measures 2 cm with an aneurysm measuring 4.2 cm.,,nothing to balk at. He up\'ed my lasiks and told me to follow up with my local cardio dr. After discussing with the on call cardio dr, they determined I could be released. So tomorrow morning I will put in my call to Cleveland to determine what needs to be done from here. Drama, drama, drama!

My feelings are so long and drawn out on the TEE I had done, I will not even waste my time or yours writing it all down. But I did find out that my aortic root is measuring approximately 4 cm, give or take a couple tenths of a cm...which technically classifies it as an aneurysm. She said for my size its worrisome. So I will have a ct scan done Thursday for an exact measurement of the root. They have also put me on lasiks to see if clearing up some of the fluid in my body will relieve my cough and shortness of breath when lying down. So I guess I will leave it at that till Thursday.

So my pcp gave up today. Coughand tightness is not lung related he has determined. So he sent me back to my local cardiology clinic since Cleveland is more than a hop, skip, and a jump away. This new Dr I saw today scheduled me for a TEE test Monday. The last one I had (8 yrs ago) was so traumatic, I actually started crying in the office when she suggested it. But shes concerned about the discrepancies between echos and how my valve opening can be .77 cm but the pressure is still in the 50\'s. I also didn\'t have an aortic root measurement on either echos. So shes wanting to make sure its not enlarging. Hopefully I\'ll know more Monday night.

So I visited with my primary care physician Monday. He checked my cholesterol since my recent tests showed I was over the legal limit. He also tested my iron levels to make sure they were within their allowed limits also. Most woman come up low but when mine was tested in Jan, I was over the acceptable amount...which can be bad for any organ that extra iron settles in. So after a 12 hr fast, my cholesterol came back under the 200 thats allowed, although my LDL is still running higher than normal. Not enough for the dr to worry, though. I have been very strict with my diet since my exercise is limited and it seems to have paid off. I\'m 8 lbs lighter and 100 pts lower on my cholesterol. I also addressed with him this lngering cough I\'ve had going for 3 wks now. He thought it is was my asthma so he put me on an inhaled steroid. But when things went from bad to worse, I got back in to him this morning and he determined it was bronchitis. There is a 1st for everything and I hope it is my last. (Highly don\'t recommend bronchitis!) He said he felt it is acute and not chronic and so not related to my valve. I guess only time will tell. For now, loving the prednisone and Z-pack he put me on. Already feeling leagues better. As mentioned above, \'penny for your thoughts\': Not quite sure what to do or how to feel about this and am wondering if any other fellow CC patients dealt with this. I try not to be a pesky patient and call my dr when the wind blows the wrong direction. But I have put 2 calls into my cardiologist at the Cleveland Clinic about 2 different drugs I was taking or about to take. The first msg left for his nurse was back in June and was only left because my husband insisted I get clearance from the dr first. Never got a call back and so never took said drug. Just figured out a different route. The second call was put in Monday over the Advair that my local dr put me on for my asthma. With all the Advair scares and recalls, once again my husband wanted to make sure it was safe for me to take. I have yet to hear back on that msg, either. So my concern is, is this dr taking me and my concerns serious and if not, what else is he not taking serious? Or is this typical for that clinic? Should I maybe get in with a different cardiologist there? Has anyone else experienced this with the CC staff? Would love to know any thoughts. M

So some things weighing on my mind: I\'ve read about pressure in the chest and coughing being common. And angina is common. Anyone have these symptoms also? At a severe stenosis, my angina is almost constant. Probably 60% of my day is trying not to focus on my chest pain. Today has been pretty bad. I\'m very tired and emotional and its like having chronic back pain...some days you can deal with it, some days it gets the better of you. Today, just tired of feeling it! Kids are going to Grammy\'s for the weekend. Going to force myself to get some well-needed rest. Maybe by Monday I can deal with life again. Was just curious about those first few things mentioned. I\'ve been having a lot of pressure and coughing (almost a smoker\'s cough minus the smoking). The coughing alone is wearing me out. Makes me light-headed and causes palpitations. I know, I know...want a little cheese with that wine?! Well, goodnight everyone. Going to push through one last day of the week. Hope all are doing well tonight. Thoughts are constantly with you all!

Quick note to say that I rescheduled my 6 mo yet again for the 3rd time but was able to get it with my Dr. Griffin instead of someone I hadn\'t seen. Its a couple weeks later than it was but they were able to work me in since I was a traveling patient. So that was the highlight of my day. This was one of the best days I\'ve had in a while. Felt like a million bucks! Didn\'t feel tired or huff and puff when walking to my car. No chest pain today. That is so annoying...probably the worst part of it all. It can be like a menacing fly that just won\'t leave you alone. It was just an all around good day. It all caught up to me when I got home from work, though. Had to work till 9p. So my reserves were spent. But thats okay cause I\'m at home now in my pj\'s and typing in my journal about to climb into bed and call it a night. So just that little blib to write. Good luck to all those getting their new heart parts to tomorrow. All our thoughts and prayers are with you. Good night from Fayetteville, Ar.

I got a call from the Cleveland Clinic last week needing to reschudule my appt due to a conflict in the dr\'s schedule. I reluctantly decided to keep my original appt date but with a different Dr. Not real sure about the Dr I got put with. He deals with valvular disease but not specifically aortic disease. I can just see myself questioning everything he tells me. That is the kind of person I am. I didn\'t question a single thing that Dr. Griffin told me because he specialized in the aortic valve. So I\'m really thinking seriously about getting with a Dr that specializes in aorta problems. My husband thought it might be a good idea to be with a Dr that has a broader view of things but I\'m just not sure. Ever since I had my appt in May and found out I was considered severe, seems like all the symptoms I was experiencing had become so much worse. Am I just more aware of them, that its ok to show the weakness? Or am I crazy and am imagining the symptoms worse than they are? Some days I wonder if I\'m just taking advantage of the Drs orders to sleep as much as I can. But then when I\'m walking through Walmart and have to stop and bend over to catch my breath, I know that it has to be bad. Really very anxious to get back to Cleveland. I\'ve got a wierd feeling about this next visit...thats probably just the anxiety talking though LOL! I\'m my own worst enemy... Until next time...

Curious if anyone has any suggestions on heart-related books. I have Adams book and it has become my \"bible\". But would like to know of any other informative books out there. Thoughts?

I hadn\'t seen my cardiologist since 2008 when I had gone to him with weight gain problems and pure exhaustion. After an echo, stress test, holter moniter, and vials of blood being drawn for testing, he came back to me and told me that there was nothing showing up in the results and that it was not my AS causing the problem and I\'d know I needed surgery when I passed out. So after a very uncaring visit, I left and told myself I wouldn\'t go back until I was having obvious symptom...more obvious than I was already feeling. Flash forward 2.5 yrs later to March 16, 2011. I was sitting at lunch at work and noticed I was having some achey, localized pain in my chest. This was nothing new. I had chest pain pretty often but I always ignored it. But there was something different about it this time. Everytime I\'d have it I\'d get a head rush, a throbbing in my neck, and throbbing down my left arm. This went on for 30 min before I called my cardiologist. They told me to go to the ER immediately. By the time I got there, I was dizzy, very disoriented, blood pressure though the roof, and left arm numb and unable to even hold my cell phone. After laying in a hospital bed for 4 hrs, they came in and told me it was a panic attack and to go home and take ibuprofen. My arm stayed numb right up to the pivotal 24 hr mark. I had my echo scheduled for the next day with the follow-up from my new cardiologist 4 days later. At my echo I had one of the best techs I\'ve ever had. So very informative. He told me my numbers, which according to his measurements were 1.1 cm valve opening, 3.5 cm gradient, and 40 pressure. He also said that if this were family, he\'d strongly encourage them to have something surgically done soon. So coming out of that room, I knew things were not good. The following Tuesday was my appt with the cardiologist. The first words out of his mouth were, \"Your echo looked great!\" Really?! Because the tech felt otherwise. But of course I couldn\'t tell him that. The tech had gone out of his way for me and I didn\'t want to ruin that for any of his future patients. But I did put up a wall after that. The rest of the visit was like listening to Charlie Brown\'s teacher \"waawawaawa.\" The last words that doctor would speak to me were \"I think you need a 2 week vacation\". I have not gone back to him since then. After that visit I scheduled my new appt with the doctor at the Cleveland Clinic for May 17th. I have to say that the atmosphere there was unlike any hospital or doctor I had ever dealt with. I instantly felt confidence in the facility. My doctor came in and discussed my symptoms with me and told me that from the results I sent him from my local doctor, I should not be feeling the symptoms I had been feeling of dizziness, exhaustion, disorientation, weakness. But \"I am not you and I am not in your body\" were his reassuring words to me. This was not going to be another doctor who automatically made assumptions by my appearance or age. So they sent me for an echo done by their doctors and on their machines. The whole approach to the echo was completely different than from any I had done in the past. When I met back with the doctor an hour later, he told me that I indeed was entitled to my symptoms. My measurements were off by quite a bit and it immediately moved me from moderate to severe. My valve opening at this visit measured .8-.9, gradient was 4, and pressure was at 50. He looked at me square in my eyes and told me that this was indeed NOT in my head, to which tears then came to my eyes. I had felt like such a loser for so long because of my lack of energy and overall feeling of being a lazy person. This was a bitter sweet revelation: your heart is worse that thought, your symptoms are legit. He actually insisted I sleep whenever I get the chance or when my body was feeling the need. No need for meds yet. After a description of my ER visit and past issues, he was pretty convinced I had been having mini-strokes. So for now I\'m just to take a baby aspirin a day. He said that my heart function was amazingly well considering my poor numbers and for that reason, he felt confident that there would be not be sudden passing out episodes for at least a little while. So for now I am to travel to Cleveland every 6 mo for regular echos and visit with my doctor. I\'m not one to be a hypochondriac but since coming home, everyday seems to get a little worse. I have increased palpitations and aches around my heart. The breathlessness has increased. The slow walking that the doctor had encouraged has become harder to accomplish. I\'m concerned about my upcoming visit in October. Heart surgery is a fate I have faced my whole life but never actually felt it would be a reality. Now with it looming right around the corner, I find it constantly on my mind and can find no ease within myself. Its just a constant awareness and anxiousness in my life that consumes me. For whoever actually reads this entry (so sorry for the extra long rambling!), I\'m not good at keeping journals. Never have been. Can\'t find the time to. But maybe this will be a theraputic way for me to handle my stress. I may not update often, but will definitely update after every doctors visit. So until next time...