Susan's Journal

I have not written in my journal for over a year, wow how time flies! I hope that all of you had a great new year. The last year has brought new challanges and medical issues but I continue to overcome and remain positive. To review 8-2010 3rd congenital heart procedure, last being mitral valve mechanical valve. Once I healed from the surgery and cardiac rehab I underwent a removal of a benign tumor the size of a cueball imbedded in the suprascap nerve of my L shoulder. We had been treating the pain with PT thinking it was a frozen shoulder from positioning during the 6 hr heart procedure, voila MRI revealed a tumor. Sooo with Warfarin a must for life and undergoing surgey first experience with Lovenox injections in my belly. I am small 5 ft 105 so not alot of fat to inject but managed just fine, lots of INR testing with my home meter to adjust Warfarin after surgery. 4 months of PT for my shoulder which was slow healing and just beginning to get back in the swng when I was rearended in my car. Chest, shoulder hip injuries to deal with. All in all I coped and continued walking everyday and began my lifelong exercise of swimming just recently. All was going well until a few weeks ago, appears that I may have had a (TIA) ministroke. So now I am on Warfarin and Plavix adjusting daily and getting use to being bruised very easily. To add to the new Rx once again back on statin as I had been off for a year and suddenly my Total Chol jumped to 365 LDL\'s 248. My lessons this past 6 months is report all unusual symptoms and changes immediately. Believe me I know better, but denial is so easy sometimes. My husband continues to be my rock. We have had wonderful family times. All of our children and grandchildren were here for a holiday. We were blessed in the spring with a new baby grandson as well. I hope that all of you are doing well, facing new leases on life, being grateful everyday even though there are days that it seems another bit of a struggle faces you. I was reading one members journal stating that when our entries become more infrequent it ususally indicates that all is well and most are getting back to \"normal\" So true! Take care and would love to hear from you Susan

Hello HVJ friends. I have been reading everyone\'s journals regularly but have not posted an update. My collpased lung has finally resolved, began cardiac rehab again, it was like starting all over. I now have a firm diagnosis on the L shoulder/arm issues, from the surgery. Definate nerve involvemnt/impingement in the scapular area, frozen shoulder, which now I have really limted range of motion. I had another cortisone inj, this time in my shoulder and began PT. Dr\'s and therapist feel about 4 months and I will be able to get back to swimming laps. We were blessed to have 3 of our 4 children here from out of state and our 2 grandsons. My youngest age 6 was wearing an event monitor and appears picking up arrythmias. All helped with meals etc for the 4 day stay of all 10 of us. I took lots of naps. What I discovered as we played games and laughed endlessly, that I have not been laughing much in the last months. (I need to work on that) This was our best Thanksmas ever. We have been having Xmas @ Thanksgiving for many years calling it Thanksmas. I found myself saying the family prayer ad libbing the moment thanking all of my family for their support and love, and being blessed with my grandchildren present and our new one on the way, it was such a special day Today in rehab I met a heart transplant 40 y/o that I recall seeing in July in hosp elevator hauling around an LVAD and he finally after a few years rec\'d a heart, we have the same surgeon. He was such an inspiration. I am so grateful for everyday that I feel positive, stronger and introspective. You would think that after the first 2 heart surgeries I would have, I thought I had, but now I really get it! My husband handed me a very meaningful present the other day. I have several Pandora bracelets with beads and a family bracelet. He handed me a new bead which represents \"inner strength\" he told me that he has always felt that is the one constant in my spirit. For those of you that answered my journals I love the messages. For those of you now just beginning your journey I wish you the best, this group is terrific Happy Holidays Susan V

Hi all, just when you think you are getting over the hump, boom! I had been in the process of getting nerve blocks for L arm pain etc 1st one worked great. Mon afternoon not so good, anesthesiologist inserted the needle and inadverently due to my small frame, poked my lung, thus collapsed L lung. I knew instantly that it did not feel the same, immed chest pain but said very little. Went home, husband in Calf, did not tell anyone that I was having progressively worsening of a friction rub and a increased heart rate. Did not sleep all night called Dr office in am, told to go directly to ER that Dr suspected he had hit my lung. Admitted immed, CT scan verified L lung pneumothorax, same lung that collapsed after my first surgery many yrs ago. Radiologist and cardiac thoracic surgeon wanted to immed insert chest tube. Because I am allergic to all local anesthetics I said until I could be sedated I would not agree to an insertion of a chest tube. Dr\'s conferenced as I had just been fed crackers and juice, sedation out, so they decided to insert needle and attempt aspiration, morphine on board, lots of pain for about 15 min, successfully hole became smaller. Remained another day appears closing, bedrest, no rehab, no lifting until I see surgeon 17th with xray. Just when I was all prepared to fly to Mich next week for our annual mother/daughter family Nov weekend. I had great care, always glad to see my cardiac team, however, not under those circumstances. The anesthesiologist does not practice @ that hosp but came immed and of course felt terrible and arrived again next am to tell me again how badly he felt. All in all pain is better, getting easier to breathe. Cardiac nurses called hosp immed as they saw my name on admitting roster, back with home health care for a few weeks. INR on admittance was 3.6, even with 2 skipped doses jumped to 4.9, no one could figure that one out, no new meds, didn\'t even have any food until last blood draw. My heart is settling down talk about valve clicking, audible a few ft away when admitted. I was calm but afterwards shaken knowing what could have happened. Such is life and once again glad to have dodged another bullet, so to speak Susan VandenBusshce NC

Hello all new and seasoned HVJ friends. I have not written in awhile but have been reflecting on how we view ourselves through this amazing journey. We speak of preop weeks, days, hours, then postop hosp days and then the ultimate home sweet home, all measurement of time. Then we enter into the recovery of days, weeks, months, looking for any and all small milestones to encourage us to continue to fight for every piece of good news and bit of progress. Cardiac rehab what a breath of sunshine. Some have some bumps, humps, hills to climb in this stage. How about our medical vocabulary. Types of valves, ejection fraction, blood thinners, beta blockers, diuretics, for some of us this is all new and we quickly educated ourselves, for some of us a refresher course. My major focus that I have written about is focusing now on not one but 2 of my grandchildren of concern. For those of you that have read my journal prior you may recall my son now 34 had an ASD exact size of mine repaired after mine in the 80\'s. He and his wife are expecting and the OB and the pediatric cardio that my son is still in contact with who was his Dr as a child, are monitoring the pregancy closely. Last week, my duaghter, mother of my 6 y/o grandchild asked me to email our families detailed history as her son is being seen for arrythmias. (I had a sister that unfortunely died of a blood clot due to an undiagnosed ASD (hole) age 11) I am so grateful that medicine has come so far and that even if genetics prevail, there are mechanical fixes for most all of our heart issues today for infants, children and adults alike. Sooo although I am loving cardiac rehab and still seeing the anesthesologist for nerve blocks, which are helping, my stamnia is not returning as quickly as it did 13 yrs ago when I had my mitral valve repair. My mechanical mitral ON-X valve is working great, INR leveling out for the most part. I will always be grateful and continue to reflect on Adam\'s \"what to take to the hospital\" COURAGE,TRUST,HEALTHY THOUGHTS,PATIENCE,LOVE. What I think I get now is we need these \"Invisible things\" today, tomorrow and forever. I read all of your journals and so encouraged by how great this site is for all of us. Take care Susan V NC

Well my first road trip under my belt, still recuperating sore and exhausted but well worth the experience. What a blessing seeing 2 of our children and daughter in law for my big 60! The perfect weather added to the thrill of engaging in an all American BB game @ Camden Yards. Somehow being with family after surgery always has reminded me of that is all that matters, friends, family and faith. Although I barely made it back to the car in the parking lot and my husband literally pushed me up the 2 flights of stairs in our sons home, but the next morning I was up and raring to go again. Rehab is going well, challanging myself each session. I am meeting with the program director next week, psychologist and dietition as well. I initially hesitiated in meeting with the psych but am struggling with my job loss which was out of my control (co policy) for one issue. The second being my son that is expecting their first born is the one who had an atrial septal defect repair age 9 and the Dr\'s are concerned, so I willing to get a little help dealing with that one. I think the hardest thing to swallow as a parent is if you pass the \"gift that keeps on giving\" to a child. and you see your child worry about their child. Dr\'s seem to think there are familiar tendencies but to the best of what I have been told not a specific gene? DOES ANYONE HAVE ANY INFO AS TO ANY HEREDITARY FACT? I would love to hear any input on the subject. Take care and live hearing from all of you Susan V

Well I have begun my 8 wk postop with Rehab 3X this week. Alot more in depth program than 13 yrs ago with nutritional support, speakers, psych/social support etc. I did fairly well with 15 minutes each at a slow speed on treadmill, both bikes, unable to do any of the upper body stretches due to sternal pain and L arm issue. Came home 2nd day slept 2 1/2 hr out cold, guess I needed that. Able to keep up pretty well except for stretching upper body exercises due to sternal pain and L arm issue which I am having the nerve block next week. I was encouraged at all of you that responded to Dwana and the elev HR even with beta blockers for months as mine cont 90-100 resting. I am thrilled to reach this milestone og another stage of his journey, with 2 others this week, MY BIG 60TH BD THIS WEEKEND. I have never been so happy to see a BD and grateful beyond belief. After 3 open hearts I am relieved and excited all in the same breath. We also have just learned X 3 grandchild on the way! My husband and I are traveling to MD to spend the weekend with 2 of our sons and a daughter in law and taking in our old home team Detroit Tigers Vs Orioles. My thoughts and prayers with the 4 of our HVJ friends undergoing their surgeries, hospitilizations, and returning to home sweet home. All in all things are sweeter and I find myself much more emotinal but in a good way this last week. Almost like it is now OK to take a deep breath and feel again with the help of such encouragement reading all the updates. Love hearing from all of you Susan V NC

7 week postop and a call from cardiologist regarding my postop diagnostics prior to cardiac rehab. Stress test OK, Echo changes since surgery. Dr advises L side of heart not as \"brisk\" as he would like, with ejection fraction decrease. Will release for rehab eval this week and with reports from rehab to Dr will then repeat echo in the next few months. INR too high with machine reading and with blood draw 4.5 Dr adjusted Coumadin dosages for a week and recheck this Thurs. Began steroid pac today for L arm nerve issue. My husband suggested late last week a trip for the weekend to Hilton Head beach which we did. I was able to walk for short periods up and down the beach, great for a change of scenery, as we so love the mts and beach and thankful we can drive to either in a few hours. Of course I tired alot sooner than I would have liked with lots of daytime rests. I still awaken every few hours @ night even with Rx due to arm issue pain. It is way too easy to get discouraged with slow progression and glitches, but I am keeping postitive knowing my only job is to get better. I am having identity issues with the loss of my career, since my company policy is termination after 6 months of disability. I am so grateful that I purchased short and long term disability and I will explore an alternative career and maybe return into some form of nursing in this chapter of my life. I truly have to believe that everything happens for a reason and at a specfic time in our lives. Of course I thought that my last 2 surgeries as to some type of wake up call. I am free now once I am up and running to visit friends, family, children and grandchildren more often in the future as our 4 children all live in the different corners of the country. My husband travels 4 days a week with his job and once he returns to work in 2 wks when I have completed rehab after the 1st of the year I will be free to travel with him as well. I am grateful for HVJ! Have a great, healthy week! Susan VandenBussche

Well, since I had continued experiencing L arm numbness and pain radiating I finally took the advise of my cardiologist and evaluated with an anesthesiologist per his referral. Through exam revealed indeed it is a nerve issue from surgery, positioning and length of intubation. At first Dr thought that it blew a cervical disc due to positioning during surgery,but the pain, numbness stops at elbow and I really feel it is a nerve involvement as well. Since Motrin etc is out, due to Coumadin trying a SoluMedrol 6 day pac, new pain med targeting nerve endings then if no improvement nerve block in 3 wks. Heart rate still over 100 back on Zebata low dose. Echo tomorrow and rehab eval next week, but will only be able to do treadmill initially. Stamnia improving walking almost everyday, but because of pain not sleeping as I was resisting pain meds, learned my lesson, now exhausted. My husband and I took a day trip to the mts the other day and heading for Hilton Head for the weekend to the beach. I figure why not be elsewhere with a new view and enjoy all that I love without the long walks, swimming, it is still worth the trip. Trying to make every moment count while my husband is still able to be home with me for another couple of weeks. INR levels still adjusting cont testing weekly now. For those of you who I see have been on beta blockers postoperatively how long have you been on the Rx and does Dr indicate lifetime necessity??? All in all I am still grateful that I cont not to have any complications after 3 surgeries, feel sometimes I was pushing my luck and once again have a greater appreciation of life, family and friends and especially all of you new heart friends! Susan VandenBussche

4 wk postop appt today All in all good report appears all on track A few glitches, heart rate still too high 103 beginning Zebeta low dose, which I could not take presurgically due to to low blood pressure and heart rate, but now that new valve is in place should be OK, home health care nurses will check 2X wk when they visit for INR levels which is still up and down Dr concerned about the cont pain in L arm and L arm numbness and L rib pain suggested he refer me asap to anesth for a nerve block not to impede my rehab progress and so that I can eliminate pain meds, I will wait another week and see how it is Nuclear stress next week, echo the next week and if all is well which I have no doubt rehab orientation the end of the month Then if all is well I will be discharged per Dr The rub is that my company policy of a job and career that I loved for 11 yrs is that once 6 month of short term disability is reached automatic termination, thank goodness I elected long term disability Being 60 next month and the economy I will cross that bridge after Dec or so ONE DAY AT A TIME I feel very positive and am thrilled that I have not lost any more weight since I had lost 25 lbs due to lung infection and Epstien Barr months prior to surgery I am so grateful for my health and life after 3 of these ordeals and my husband and I cannot believe that friends and neighbors are still bringing us meals People are so kind Hope you all have a wonderful holiday weekend Susan

Hello all and I hope this finds you all well in your pre and post periods. I was curious as to the time frame and the determing factors your cardiologists used to begin rehab? It has been 13 yrs since my last surgery and I am unable to recall which week I began postoperatively. thanks Susan V

8-25-2010 Postop appointment with surgeon today 3 wks out Dr reported the 13 yr old repaired mitral valve was \"terribly stenosed unable to manually even open it in surgery\" All in all a good report all is healing well, lungs clear unlike last 2 surgeries, (I am so grateful) Severe nervery pain from neck, shoulder and ribs with numbness down L arm which has cont since surgery from spreading of breastbone, which time will resolve Dr addressed threefold from previous surgeries Heart rate a bit too high 90\'s to 100\'s will see Cardiolgist next week may need to address Rehab in about 3 wks can\'t wait Hope all of you fellow tickers are hanging in there, truly one day at a time Believe, trust and support to all those who are willling to help!

I am a 59 year old female who just underwent my third congenital open heart surgery Age 30 Atrial Septal Repair thoracotomy Age 47 Mitral Valve Repair with Duran Ring sternotomy Age 59 Mitral On-X Mechanical Valve replacement sternotomy I have been an active sports oriented wife and mother who worked full time for the last 20 years I think this was only to my advantage that I am in overall good health up until February of this year Echos had been OK until my husband I returned home from our annual snorkeling Caribbean trip when I experienced a severe case of bronchitis landing in the hospital for several days This was the third bout of lung issues in 3 months Dr suspected Pertussis Never really recovered developed Epstein Barr Virus dropped from 130 to 107 lbs and unable to swim laps, walk and work Long story short with many tests and Dr\'s involved drastic change in mitral valve thank goodness not endocardis as suspected initially We had to wait until I could build up a little staminia to undergo the valve replacement One of my children followed suit now age 34 with Atrial Septal Repair at age 9 My family and I have learned some valuable lessons along the way My first 2 surgeries we resided in Michigan, traveled 4 hrs to the U of Mich this time stayed close to home in Charlotte North Carolina and glad we did First 2 surgeries encountered complications after returning home with congestive heart failure I am 3 weeks post op and not only pleased with the surgeon we chose, hospital and now after care with home health care but feeling like sharing my story Returned home 8th day only glitch 4 days in ICU due to low heart rate and blood pressure resolved with NEO Other than pain which is quite significant due to 3rd opening of chest and heart with significant scar tissue I am feeling very positive and patient I loved Adam\'s book and although a veteran patient found many new ideas useful INR levels all over the place but I am not overly concerned have great faith and trust in my home health care nurses working with my Dr office Looking forward to my 1st post op visit this week and to begin formal cardiac rehab when given the go ahead Trust, Faith, Support and a good positive attitude is so vital to all of us and our families Susan