Kathy's Journal

Well... I have learned something. When your INR is the same reading 3 months in a row (both on my machine and having the lab do it), something bad will happen. My cardiologist said that they firmly believe that a blood clot formed on my valve, then broke off and lodged into my coronary arteries, hence the heart attack. So, after having both a TEE and a heart cath/angiongram yesterday, I got released from the hospital. Now I have a new, higher dose of Coumadin, and some lovely (NOT) lovenox injections. Those injections should be BANNED! The shot itself is not bad, it\'s the fact that the medicine BURNS as it\'s being injected! Richard is proving to be quite the nurse - he gave me my shot while I screamed. And he has been at the hospital every day while I recuperated. I will take the shots until Friday morning, then go in & have my INR tested. If my INR is in range, no more shots. INR not right, more shots & retest Monday. I found out that the Lovenox protects my valve from getting blood clots until my Coumadin level returns to acceptable levels. New game plan... higher dose of Coumadin and aggressive monitoring until we find the right dose. Now that this little escapade has more than likely met my deductible and out-of-pocket, I should stock up on strips for my INR monitor. I will NOT let this happen again! Once again, I have been blessed with an awesome husband, a great mom, and some truly wonderful friends. Sorry I left you hanging, Fran! And yes, should there ever be a next time, I will have the ambulance take me.

Well... Just when I thought everything was going great, this past Thursday night I had an experience I hope never gets repeated. I had just gotten home from work and was getting settled in front of the TV. All of a sudden I feel a very intense, crushing pain in my chest. It continued for quite some time, accompanied by a feeling that my heart was going to explode from my chest. I sat down in hopes that the pain would subside, and then laid down trying to get the pain to quit. It didn\'t, and in fact it was gaining in intensity and had radiated down my left arm. So I decided that this was something that needed attention ASAP. I wasn\'t feeling dizzy or lightheaded so I thought I would be OK to drive myself to the ER. I got to the ER and of course when you state you\'re having chest pains they get you back so fast it\'s unreal. Before I knew it I had an EKG slapped on me and was chewing 4 baby aspirin. I had called Richard & was talking to him all the way to the ER. He was on his way to Tennessee to deliver a load and turned right around and made his way back to Tulsa. He had also called my mom & stepdad and they were en route. After my EKG, blood draw (to test cardiac enzymes) and chest x-ray, i got wheeled into a hallway to wait for at least 3 hours to see a doctor. Finally saw the ER doc around 9:30pm. I don\'t think he knew what a mechanical aortic valve is supposed to sound like as he said I had a murmur! Anyway, they admitted me to the hospital for overnight observation. Saw my primary care doc Friday morning & he said that it appeared that I had had a very mild heart attack. He then consulted with my cardiologist. Cardiologist then said he wanted me to have an echo & CT scan of my lungs (to rule out any blood clots). He also said that I will more than likely have a heart cath on Monday if the CT scan & echo were inconclusive. Meanwhile my blood pressure had been spiking, and when the ER people took my INR it was 1.8. It\'s now Saturday. Saw cardiologist covering for my cardiologist who said the CT scan did NOT show any blood clots (Praise God). He thinks it might have been a piece of \"debris\" ( he would not elaborate on that) from my valve may have gotten lodged in a coronary artery. So, now I am to have a TEE on Monday, and if the valve is fine then I get a heart cath on Tuesday. Has anyone had a similar experience? I\'m wondering how \"debris\" from my valve could happen. I think it may be some scar tissue. They are keeping me in the hospital over the weekend. I have been attached to a heparin drip (oh joy!) so I have my IV pole as a companion everywhere I go. They have encouraged me to walk a lot. Stay tuned for further developments as events warrant.

Well... After about 6 months (since June) of trying to get an answer from the insurance company as to the real reason my cardiac rehab was denied, I FINALLY get a response - the hospital used the wrong diagnosis code! So, I have called the hospital & told them to rebill the claims using the correct diagnosis code. I am a certified medical coder so I am familiar with coding rules, which the hospital did not follow. So, we shall see if they submit the corrected claim. In other news... I was approved for an at-home INR monitor! I had my training on it this morning. Very easy to use! Now for the interesting part. I had been on monthly monitoring and went to the lab on Wednesday (12/8) for my last one (since I have the home monitor now). My INR was 3.2. TOday, when I tested on my new monitor, both times my INR was 4.6! EEEEKKKK!! I called my primary doc & spoke to the nurse on call (my doc\'s office is closed on weekends, of course). She had the doc on call (my primary doc is in a group practice) look over my info. I am to not take my warfarin (generic of Coumadin) today or tomorrow & call my doc on Monday. I am wondering about 2 things here: 1) is the monitor calibrated correctly? and 2) what would cause such a dramatic jump in 3 days (with NO changes in routine or diet)? Actually, make that 3 things I am wondering about - 3) how much does my INR fluctuate between monthly testings? All those months I was on monthly testing it could have fluctuated and I would not have any clue whether I was in target range or not. This Coumadin business is SCARY! Anyone else having this issue? And finally --- I marched in a Christmas parade last night. 2 miles and I wasn\'t winded! I am so amazed at how much better I feel now than I did this time last year! Hope everyone has a safe & enjoyable holiday season!

The fight has begun. My insurance is denying all of my cardiac rehab because according to my EOB (explanation of benefits) \"the service is not a covered benefit under your plan\". If I had known that I would have a fight on my hands, I would have never done rehab as it is much cheaper to go to a gym as what rehab will cost me. Rehab will cost me $116 per session, and I had 36 sessions. If my math is correct (and I question myself because I have a horrible tendency to transpose numbers) that\'s about $4000, roughly. I got my first EOB from my insurance stating that my sessions in June were not covered because they were beyond the 12 week period I was supposed to have them in. Then I got another EOB stating that my sessions in May (which were within the 12 weeks allotted) were denied because of the reason stated in the above paragraph. I have a feeling April & March will be denied as well -- watching the mailbox daily for yet another denial EOB. I verify insurance benefits for an outpatient surgery facility here in Tulsa, so I know what to ask the insurance regarding coverage. I contacted the person who verified benefits for cardiac rehab & she told me that my particular insurance tells patients their rehab is covered and then comes back and makes the PATIENT prove that cardiac rehab is medically necessary! So... now I have to contact my cardio\'s office and get my clinical records and notes stating that I needed all 36 sessions of rehab! I am surprised they even approved my surgery! By the way I have a PPO as opposed to an HMO. I want to be able to go to any doctor at any time & not have to wait for my PCP to say it\'s OK. I have a feeling that is also why my insurance is fighting me getting my own PT/INR machine - they don\'t think it\'s medically necessary. I want to know the logic of making patients themselves prove that the treatments & procedures they need are medically necessary. 99% of patients are not savvy enough to know the medical field. I realize doctors are under so much pressure for ridiculous lawsuits so they order way too many unnecessary stuff, but come on! I feel for many of the elderly patients I deal with. They don\'t understand all the insurance and medical stuff - they just put their trust in the doctors to know what\'s best for them. And then they can\'t understand why they have such high bills. Geez!!!!! OK... enough ranting for now. Anyone else encountering flack from their insurance over your procedure & follow-up?

Well, this Friday I will have my last session of rehab Woohoo!!! Richard & I found a Nautilus weight machine in the garage that still works, so I can do my weights at home. It has a lat bar, leg curl extensions, and stuff to do flies and other exercises. So I have no excuse not to continue exercising & staying in shape. I am also considering taking up running. I still am shocked at how much energy I have now. Awesome! I have had nothing but frustration trying to get an at-home INR monitor. I found one I wanted, but after I sent in the paperwork, they told me that they are not in-network with my insurance! I would have to pay $57 every 4th test, which really adds up after awhile, in addition to the cost for testing strips. ACK! It is cheaper (for now anyways) to keep going to the lab every 2 or 3 weeks. I called my insurance & found a supplier, but getting them to return my phone calls is dang near impossible! Oh well... They adjusted my Coumadin dose to 4mg. My last 2 INRs were 1.8, so my PCP decided to up my dose. Hope everyone is doing well and staying cool during the summer!

Hello everyone! Doing fairly well, although right now I am struggling with a sinus headache that\'s causing me some dizziness. Eight sessions left of rehab - yay!!! Then I get to go back to sleeping in an hour & getting up at my normal time. Thanks Cap\'n Bill for telling Billie to be nicer to me! I had to give up the elliptical as it was killing my knees. I think it\'s because I am not a bicycle rider. So it\'s back to the recumbent elliptical bike (which I and my knees like) and the treadmill. I also like doing the handweights. Scar is still healing nicely and my valve is still clicking away. Have given the forms to my primary care doc to see about getting an at-home PT/INR monitor. For those of you facing lifelong Coumadin usage I highly recommend getting an at-home monitor. It only uses a finger prick of blood and it\'s quick. Will let you all know if my insurance approves it. According to primary doc it should be covered. Hope everyone is doing well! I promise not to be a stranger.

What a ride the past 3 months have been! I can\'t believe how time flies! I am still amazing myself by how EASY things are for me to do now that right before surgery I struggled to do. I still am getting in shape and builidng endurance, but -- wow!!! I do have a question for those of you who have had your mechanical valve after a year or so... Do you still hear your valve clicking? I have totally accepted my clicking valve when I hear it in the quiet, and in fact I even freak out if I can\'t hear it right away! Lol! I have also accepted being on Coumadin. My primary care doc is so wonderful. He made sense for me all the warnings and such about Coumadin and I am cool with it. I am so blessed and I am happy to be alive! Take care you guys!

Be careful what you wish for. I wanted to get back to a normal life and I forgot just how busy I was before I had surgery. I am amazed I was able to do so many things! Now I am trying to juggle getting up an hour earlier so I can go to rehab and go back to all my pre-surgery extracurricular activities - choir practice, bagpipe band practice, Friday night church, etc. I will be very glad when rehab is over. I do enjoy working out and the nurses are great, but all the driving and getting up early and stuff is really getting to me. I also have realized just how handicapped I was by my valve going bad. Before surgery I was having difficulty singing and playing pipes. Now when I sing I can hold out long notes (for at least 8 to 12 beats!) and I can play my practice chanter without running out of breath after the first song of a 3-song set! I also have started to pick up my full set of pipes and noticed that when I blow up the bag I don\'t get dizzy & almost pass out! So that is absolutely awesome! I am also getting frustrated at rehab because they seem to forget that I want to start working on upper body stuff. Every tiem I go I remind them I want to do that but they seem to forget & then all of a sudden remember that I wanted to do that. Oh well... I did get to try the standing elliptical machine though - man that was tough!!!! It looks so easy when you see someone else work on it, but it is so hard! I did manage to do 5 minutes on it though! Watch out Cap\'n Bill - they might put you on it! Other than that I still marvel that it will be 3 months since my surgery! Wow how time flies! Now to go catch up on all you others\' journals! Hope all is well with everyone!

I read with interest the guest blog by Dr. Giovanni Ciuffo that Adam posted on his blog today. While I like that the minimal scar operation is becoming an option, unfortunately it was not an option for me as I could not afford to travel outside Oklahoma for my surgery. I was blessed to have an AWESOME surgeon (Dr. James Whiteneck) and an uneventful, successful surgery and recovery. When I first learned I had to have my aortic valve replaced, yes I was worried about the scar that would be left by the traditional surgery. I was especially worried how my husband Richard would react to seeing me with a scar. But as my surgery approached, I became at peace with the fact that I would have a large scar (as did Richard). I was surprised when I first saw my scar. Yes, it was red and nasty, but it really was not as bad as I had imagined it would be. And, as it has healed, it has become \"cleaner\". Right now it is still a nice dark pink line (some say the top looks red rather than pink) but it has a \"clean\" appearance to it. I now look at my scar as a badge of honor. It reminds me that I am alive, and what all I endured. While I do understand how some women would be self-conscious about the scar of traditional open heart surgery, I choose not to be. I do know about being self-conscious about my appearance - I had horrible acne in my teens and also wore Coke-bottle lenses in my glasses. But again, I choose to not be self-conscious about the scar. However, I am grateful that the minimally invasive procedure is becoming more of an option. And, I am glad to see that more surgeons are becoming aware & sensitive to women\'s concerns regarding the scar left behind. I know my surgeon was sensitive to my concerns and was very gracious in addressing them instead of brushing them off. By the way... anyone using Mederma on their scar? I thought about it but I can\'t see putting it on 3 to 4 times A DAY. Heck, I am doing good to remember to take my meds every day! In other news... They let me do the arms on the recumbent elliptical bike and added a 0.5 incline on the treadmill. I will still have to wait another couple of weeks before I can do the weights, but that\'s ok. They want to make sure my sternum is totally healed, and I am cool with that. I still have issues trying to get up earlier to go to work earlier, but that should get better. It\'s been real fun explaining why I am in rehab to all the heart attack & bypass patients that come in, espeically when they ask me when I had my heart attack or if I had a heart attack. They seem shocked when I tell them I just had my aortic valve replaced. But they all are very nice people and it\'s fun to see them 3 times a week so we all can give the nurses heck! Hope everyone is doing well!

Today marks 8 weeks since I underwent my surgery! Wow -- I can\'t believe it! I still am shocked that I survived such major surgery and the new lease on life I have now. It made celebrating my 40th birthday this past April 8th even more special. What\'s really awesome also is that people who saw me before my surgery have noticed that I look so much better post-op - I have more color, I look healthier, and they ask me how much weight I have lost! Of course I have no takers on my hospital diet that caused me to lose 10 lbs while I was there - the jello & juice diet. A little drastic maybe? Today I got to use the arm portion of the elliptical recumbent bike at rehab! Yeah! Something new! Still trying to get used to coming in an hour earlier to work so I can go to rehab. I am so NOT a morning person! Oh... gotta go. CSI Miami is on!

Well, my first week back at work full-time. Man, am I tired! I am trying coing in a hour earlier so I can go to rehab on Mondays, Wednesdays & Fridays. My body is not used to getting up earlier on weekdays, but this is only the first week so I am sure it will get better. I am getting bored at rehab though. All I do is treadmill & exercise bike. They keep telling me I get to do upper body stuff soon but I am beginning to wonder when \"soon\" is. Good news from the cardiologist - I don\'t have to see him for another year. He is happy with my outcome. I will say though that I felt very rushed. I only spent maybe 15 minutes max seeing the doctor. But, I am not having any problems so I guess things are all hunky-dory. Now I need to go take a nap!

I am so mad today it\'s unreal. OK... On March 1st I made an appointment with my cardio per surgeon\'s request for April 6th, 2010. A card was mailed to me March 17th reminding me of this appointment. I show up today for my appointment (card I received in mail and the card given to me when I made the appointment on March 1st) and I am NOT on the schedule! You would think that if I got a card on March 1st AND a card mailed to me 2 weeks later that I would be on the books for today to be seen. I flustered the receptionist so much that I now have an appointment (in the books) for Friday. I am getting sick of my cardio\'s office staff being incompetent. He will get an earful from me when I do see him on Friday. I love my cardiologist, but his office staff & nurse leave way too much to be desired. What if I had come in from out-of-town? Geez... Now I have to take off work AGAIN on Friday and go see the cardio. To Fran & anyone else who might be wondering: my surgeon released me to go back to work. He wasn\'t concerned that I had not seen my cardiologist yet and was very pleased with my healing progress. Now to watch the skies... We\'re supposed to have severe thunderstorms tonight. Welcome to Spring in Oklahoma!

Well, I went to work this morning. OK Fran - yes I have a desk job. I verify insurance benefits for patients at an outpatient surgery center. Today though I went thru all 30+ emails and took my annual corporate compliance online training (BORING!!!!). Tomorrow I will get back into verifying - basically I spend 99% of my job on the phone with insurance companies and patients. It was good to see everyone and I was treated like a celebrity - all the girls wanted to see my scar. I have my first appointment with my cardiologist since my surgery. I hope he doesn\'t go deaf listening to my new valve! I went to a different hospital than where my cardio practices so while I was in the hospital I saw different cardios - and I like mine much better. The hospital cardios lacked bedside manner big time, especially the one that happened to walk into my room while I was still waiting (had been waiting almost an hour for pain meds & was ignored by the nurse) for pain meds and was almost screaming. He told me I should have anticipated the pain & not waited. I screeched at him that I anticipated it an hour ago. He basically said \"Oh... I see\" and said/did nothing. It took my mom & hubby to finally get the nurse in to give me meds. I am not a happy camper if I am in pain. Anyway... I am anxious to see what my cardio says. Had an older gentlemen try & guess my age today at rehab. He said I looked like I was under 30! What a compliment! He had no clue (and I did not say anything & neither did the rehab nurse) that I will turn 40 this Thursday! Came home & crashed. Get to do this all again tomorrow - yippee!!!

Yep, tomorrow I go back to work. at least it\'s for half-days this week, but I know I will be very tired after just a half-day. Glad I only went to one church service today - I know I would have not made it thru 2 of them. My church had a sunrise service at 6:30 this morning, then regular mass at 11am. Now to await another milestone... I turn 40 on Thursday the 8th. I have already received the best gift ever - an extension of my life so that I can enjoy another 40 years or even longer. When I saw my surgeon last week he said my valve was \"terrible\" and I would not have lasted much longer with it in that condition. Now I can have a longer time to enjoy everything. And now, I take nothing for granted anymore. Isn\'t it amazing how somthing like valve surgery humbles you & makes you appreciate everything? Wow! Hope all of you have had a Happy Easter!

Had an awesome report from my surgeon yesterday - I get to drive now!!!! Get to go back to work next week --- part time the first week then full time the week after that. Still no vacuuming for another 6 weeks (sorry Richard), can now lift UP to 15 lbs. - increase that by 5 lbs. every 2 weeks, and just listen to my body and if it hurts - STOP! The calcium supplement issue is for those who have tissue valves. I have a mechanical valve so I can take them if I want. Now I cannot take multivatmin supplements because I am on Coumadin (the vitamin K issue). Regarding if I overdid the leafy greens/Vitamin K, the surgeon told me not to worry about that. It would take quite a bit of them at one sitting and then about 24 hours to notice anything. He did recommend getting an at-home INR monitor and if I am in doubt or worried I can test my INR & see. At rehab they have increased my speed & time on the treadmill. Man, I cannot believe how much a little increase can wipe you out! For those of you who have just joined us here at HVJ - you have come to the right place! We are here to offer you support & encouragement at every step! Thank you so much Adam for setting this up for us! Now where did I put those car keys? And what does N, R, and D mean? Just kidding! I think I remember how to drive!

I will add that to my list of questions to ask my surgeon when I see him Wednesday the 31st. I usually don\'t take a supplement but eat lots of yogurt & cheese and drink chocolate 1% milk (don\'t like regular milk unless it\'s on my cereal). I know multivitamins are out because of the Vitamin K. I also want to know what would happen (not that I am planning on doing this) if I overdid the leafy greens/Vitamin K. The surgeon\'s nurse said that they had a woman clot her valve by eating a whole huge mixing bowl full of spinach (EEK!). Again, I am not going to do that but I am curious what symptoms I would experience. My INR is staying within the range so I am not worried. Ordered my medical ID bracelet today that says I am on warfarin (generic for Coumadin) and that I\'m allergic to latex, and of course that I have a mechanical heart valve. Still working on getting used to my valve clicking. I have to remind myself that I want to hear the clicking as it means I AM ALIVE. Going to go read Cap\'n Bill\'s journal again - that dream is hilarious! The wonderful things drugs do to us - NOT!

Wow... I am still in awe that it has been a month (actually 4 and a half weeks) since my surgery. RIchard & I have been getting a lot done while he\'s here. Richard even got to work out with me at rehab! It\'s surreal being the youngest person there - the other patients all keep looking at me and whispering to each other wanting to ask me why I am there. They all think I am too young to be there but I tell them when it needs to be fixed it needs to be fixed and age doesn\'t matter. They do agree with me though that there should be big screen TVs in front of the treadmills so we can watch TV while we work out! I have learned though to listen to my body. Even though I feel good enough to do stuff, I get so excited to be doing it that my body has to scream at me to tell me to stop. I want so badly to be back at my pre-surgery level but I know that it will take time as my poor body is still recovering from the shock. What does keep me motivated is the fear of doing something stupid that would set back my healing. They say that good things come to those who wait! I am also encouraged by reading the journals of people who have recently had their surgery and those about to have it. To hear others report they are coming thru just fine is awesome! And for those of you who haven\'t had surgery, you have come to the right place for support & encouragement! Keep your faith & gather a strong support team (including us here on HJV) and you will do just fine! Now to await my appointment with my surgeon on the 31st.

Well, mom left yesterday. While I will miss her company, I am glad she left for Stillwater (about an hour & a half west of Tulsa) yesterday as I woke up this morning to see sleet & ice covering everything. Around noon it started snowing and we now have about 6\", and another 6\" tonight! What ever happened to the first day of Spring? I love snow but I am so ready for spring! Needless to say I will not be out walking today or tomorrow - the roads are slushy in our neighborhood & of course there are no sidewalks (and if there were I wouldn\'t be able to walk those either). The kicker is yesterday it was 71 degrees & sunny. What the ?????? Doing OK by myself... I can fix myself something to eat, take care of myself (bathing & dressing), feed the cat & dogs (food already loaded into the storage bins - I just scoop it out), etc. Miss the comapny though (dogs don\'t talk much). I am glad to hear Fran & Cap\'n Bill came out of their surgeries fine and that Bev is settled in her new home - check out the pic of her & her adorable fur friend! I cannot believe that Monday will be one month post-op. Time flies when you are having fun! I am pleased with my progress, even though I wish it would speed up (just to where I can drive, anyway) a bit. But, good things come to those who wait. It still blows me away that I survived open heart surgery and I have a new lease on life with a mechanical valve - WOW! I am so blessed! Anyone else watching NCAA basketball? I can\'t believe Kansas got beat! I am disappointed in my alma mater Oklahoma State. they should have played better than that. Cap\'n you are missing the snow here!

Well, I was very impressed with cardiac rehab! I did really well on the treadmill despite being a bit out of breath after 17 minutes - apparently I took the treadmill faster than the pace I normally walk. The bike wasn\'t too bad except that my thighs thanked me - not! - afterwards. The classes are not mandatory & I can attend the ones I want to & skip the ones I don\'t think I need. I will do the exercising though as it is a good measure to see whether I am over or under-doing what I need to be doing. Plus it\'s comforting to be monitored so that I don\'t do an exercise wrong and injure myself. My only concern is that I can\'t do the upper body stuff (which I know I will need to rebuild my strength there) until 8 weeks post-op. I will more than likely be back at work and my work is NOT flexible; meaning that they probaby will not let me take time off to go exercise. I am the only one that does my particular job & my work (mainly my supervisor) is not exactly happy that I had to have this surgery to begin with. I am dreading returning to work as I know I will be slammed. They keep asking me when I get to return and I tell them I will not know until the surgeon releases me. I will talk to my clinical administrator & see if I can come back part-time for a few weeks so I can go do my upper body stuff. Otherwise, heart rate & BP were excellent & on target when I did my stuff today - YAY! The nurse who checked me in said she could not tell that I was 3.5 weeks post-op from my surgery - in other words I looked great! Now to look over the thrilling, page-turning book I got from rehab. Oh, & when I am done with rehab I get a t-shirt! Cool!

I am wondering what cardiac rehab will be like tomorrow. I went through and filled out all the paperwork. My main \"concern\" is they seem focused on diet and cholesterol. I don\'t have issues with cholesterol: my arteries are clear and my cholesterol is fine. My high blood pressure is controlled with meds - but there\'s a possibility I may be able to get off of them as my diseased valve may have been the cause of it to begin with. I also follow a low-fat and low sodium diet as I have a significant family history of heart disease and I did not want to go through what my dad & grandpa went through. In other words, I am wondering if cardiac rehab really is worth it. Will I be able to get anything out of it or would it be a waste of time? To those of us with Irish heritage - Happy St. Patrick\'s Day! Now to check up on Cap\'n Bill & see how his surgery went. Fran, God bless & good luck to you tomorrow!