Susan's Heart Valve 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