With 6 of my soon to be 8 grandchildren- Giving many thanks this year for life itself, and for blessings that come in small packages!
Ten days post-op: Update
Journal posted on November 20, 2014
Hello HVS brothers and sisters! Today marks 10 days since my surgery for MV repair, and it has been going pretty well until I hit some bumps in the road this past Tuesday night. I ended up in the ER at our local hospital with an irregular HR in the 120's, shortness of breath, dizziness and near syncope. Turns out I had gone in to atrial fibrillation, a very common scenario with HVS and especially the MV. They also found 2 small pleural effusions in my lungs, but thankfully it was not pneumonia. So i was admitted to ICU and they were able to cardiovert a fib back to normal sinus rhythm. I was transferred out of ICU to the tele unit and that is where I am right now. The cardiologist and hematologist both think that anti-coagulation is in order at least temporarily to avoid my fairly high risk of stroke. So that is what is being done now. Walking a very fine line with my bleeding issues and now the stroke risk. Oy ve! Can't be easy can it? It looks like I will be on lovenox and then coumadin at least for the time being, with very close monitoring. Makes me really nervous, but I trust the docs.
Sorry I have fallen off the radar recently. With my recovery issues, I have not really felt up to keeping up with communication. I do want you all to know that i have been thinking about you and keeping you in my prayers, even when you don't hear from me. Thank you again for all of your well wishes, words of support, and prayers. They continue to carry me through this challenging time. Prayers that this anti coagulation issue is resolved soon with a positive outcome would be really appreciated. With love and gratitude, Joan
I am happy inform you that my surgery went well, with no usual bleeding, and a MV repair rather that a valve replacement. Yay! Thanks be to God! I would also like to express my deepest gratitude to all of you, for your reassurance, encouragement, and of course all of your prayers. I could feel the support from all of you as I went through surgery and in the initial recovery period in the hospital. When the medical team was doing post-op teaching, so much of what I was told rang a familiar bell due to all of the helpful information you have shared so openly from your own personal perspectives. Thank you, thank you, thank you from the bottom of my new and improved heart! You are certainly a very special group, and I feel so blessed by everyone here. And of course Adam, you deserve special acknowledgment for all that you have done and continue to due for our community.
I just arrived home, and I am feeling very tired, but I wanted to give you a brief update. I will post a more detailed report (along with a picture or 2?) in the next fews days when I am feeling a bit stronger. At the moment, I am just so grateful to be alive. What lies ahead in recovery may be tough, but I am here and I will face it a step at a time. That's what we do . Love to all, Joan
Joan continues to do well. She moved from ICU to a private room this morning. She must be feeling better...she put on some makeup (though she doesn't need it!). More rest is always good right now. Thanks to all the friends and family for the support and prayers. They are important medicine right now, too!
Great news!!!! Joan just came through the surgery with flying colors. Text book operation. She did NOT have to have her valve replaced, as the surgeon was able to repair it. That gives her a much better long term prognosis, rather than using an animal tissue valve. There was no problem with bleeding either, as the plasma pre-treatment worked as hoped. She is now in intensive care, and I should be able to see her in a few hours. The expectation is that she should have a normal recovery and leave the hospital after 5 days. The doctor says she should be able to walk and go up and down stairs as she wishes. No unusual restrictions. Prayer works!!! Thanks to all who offered them, and thanks be to God!!!!
Husband Guy (now a relieved guy!)
Well, it looks like there are 4 of us scheduled for HVS this week, and I'm on first on deck (lucky me!). Tom, Kathleen and Barbara, I wanted to let you know I will be praying for successful surgeries for all. May God bless you throughout this journey.
I must say, this second wait has gone much more quickly than the first wait for the surgery postponed back in October. I have kept really busy by returning to work part-time, yoga 3 times a week, journaling/ prayer, traveling to Wisconsin to see the kids, cleaning closets, visiting with friends. Whew! I'm tired! I guess I've been keeping myself too busy to think. Maybe of bit of acceptance since the initial shock has worn off, maybe on auto-pilot at times to cope with the anticipation? My anxiety level has been less than before, but yesterday I felt it coming back somewhat. I want to thank all of you here on this site for openly sharing your stories, your surgical experiences and bumps in the road, your openness with feelings, and in providing such encouragement to all. And of course your prayers and supportive sentiments mean everything! You all understand this experience like no one else can, and you have helped me more than you know. I am so grateful.
My doc has been gone on vacation for the past 2 weeks, so I feel a little out of the loop about the logistics for surgery this Monday the 10th. His nurse is supposed to call today, so I have my list of questions ready. Here is what I know: On Monday morning just before surgery, I will receive a transfusion of plasma with cryoprecipitates to treat the slight bleeding disorder that was found. It has been identified as mild von Wilenbrand disease, type I, which causes bleeding tendencies but is generally of little consequence in life. It may cause nosebleeds, heavy menses, easy bruising,etc. but does not require treatment. However, the BIG exception is when one is facing surgical procedures; to prevent hemorrhage, a transfusion is given pre-op . So that is the plan. I am still feeling such a sense of relief that this was identified prior to surgery. As I have shared, my dear mom had MV surgery in 2008 and bled profusely during and after surgery. I feel her presence, and I believe she did have her hand in this. Today, November 7th is her birthday, She would have turned 86. i love you mom and I miss you every day.
I posted the family photo of my children and grandchildren, who are my reason to keep on going. I look forward to being able to keep up with all of them a bit better when this HVS experience is in the rear view mirror. Thanks again to all of you! I will post some more, as visiting this site and following your stories has been a big part of my coping. It's good to hear how you are all doing. My daily prayers continue for everyone. Joan
Spring 2014- With our growing clan: My husband, 4 children and 3 spouses, 5 grandchildren plus 3 more on the way! A wonderful support team that I really need by my side- they arrive this weekend and the chaos begins!
The twists and turns continue as I wait to have HVS! After waiting all day, I received a call from the Hematologist/ oncologist at Loyola regarding the testing done yesterday. The "mixing test" came back showing an abnormality, which indicates I do indeed have some type of bleeding disorder. I will head back to Loyola tomorrow for additional testing to try to identify the specific "clotting Factor" that is causing a prolonged partial prothrombin time (PTT). The bottom line is, had they not identified this problem, I could have hemorrhaged and/or developed clots post- op. I thank God for letting this be identified before I went in to my MV surgery.
My surgeon's nurse just called, and had been informed by the hem/onc doctor that the surgery needed to be postponed due to the abnormal clotting results. While I am disappointed I will not have surgery as scheduled, I am so grateful this problem was found before surgery, and not during or afterwards!
I would like to share a personal story related to this incident. I have not shared it previously because I did not want to cause undue worry for anyone on this site facing HV surgery. But given my recent developments, it seems appropriate because it appears that some pieces of the puzzle have been identified.
In 2008, my dear mother underwent MV repair surgery at the age of 79 for a severely leaking MV. She bled profusely during and after surgery, despite receiving multiple transfusions of whole blood and plasma. Ultimately, she bled in to her brain, and then threw clots to the brain. Very sadly, my beloved mom succumbed to the aftermath of her multiple strokes. Needless to say, this is something that has worried me greatly in facing my own MV surgery. A big part of my prep for surgery has involved grieving the loss of my mom all over again, and it has weighed heavily on me. In addition, knowing that genetically and medically, my mom and I have always been so alike, the fear of a similar outcome with my own surgery has haunted me. Now that this has been found before surgery, and is being specifically identified, appropriate treatment will be given to fix the problem before surgery.(most likely plasmaphoresis to replace the missing clotting factor). I am so sad that they did not discover this for my mom before her surgery so she could have been treated.
I know my mom is watching over me from heaven in all of this. I also know that the prayers of all of you and others have been answered. Thank you for your love and support. For the first time, that nagging feeling deep inside that something more was wrong has been assuaged. I have faith that when I do have HV surgery, I will be fine.
Tentatively, my new surgery date is November 10th ( my surgeon leaves on vacation next Wednesday for 2 weeks, so unfortunately it will be delayed).
I will be returning to work in the meanwhile, but I will stay in touch and continue to pray for everyone on the site. May God bless you all. Joan
Trying to enjoy the beautiful Autumn day with 3 of my 4 children the weekend before surgery
3 days before surgery and I've hit some medical challenges.
Journal posted on October 13, 2014
So it's the 3 day countdown till my surgery this Thursday 10/16. I have been doing surprisingly well according to my husband.( I have not cried in over a week now, and I have been feeling very positive about surgery). My last day at work was Friday, and my coworkers, family, and friends have been wonderfully supportive. Lots of encouraging words and prayers which of course mean so much. This past Saturday I went and spoke to the priest at our parish and I went to confession (I'm Catholic). I must say, I had felt such a sense of peace since then, and I thought "Ok, let's do this and get on with life! ….Well, I guess it's not going to be that smooth, as I have run in to some potential complications that may delay the surgery….oh great!!
Last week I had some labs drawn because my doctor said he needed to rule out clotting/ bleeding issues. The reason behind this is that 7 years ago I was diagnosed with an indolent lymphoma that has never gone active or needed any treatment. My related labs have always been stable, and even improving in the past 2-3 years. My most recent labs were very good; however bleeding issues can still be a problem with this particular cancer (Waldenstrom's macroglobulinemia…that's a mouthful!) Having this diagnosis is the reason why I'm such a health fanatic, and I think my healthy lifestyle has made a difference in the keeping the disease latent. So today I went to Loyola for my pre-op testing and found out that one of my tests (PTT) showed a slightly prolonged bleeding time. The results of 2 other tests are still pending. Needless to say, when I got the news I was very caught off guard and the tears began to flow. Now what??
My oncologist has said they may need to do a plasma transfusion prior to surgery, which would take care of the bleeding/ clotting issues, and give me a 2 week window in which to have the surgery. Geez, it just can't be easy, can it??
At the moment we are going ahead with plans for surgery this Thursday, but I will most likely have a definitive answer Tuesday or Wednesday. I feel like I am back on the roller coaster ride, and I'm feeling anxiety again...
May I ask you all for your prayers and positive thoughts. I am so ready to get this surgery done as scheduled, but of course we need to fix any issues that may present a risk. Thank you all! You are a wonderful bunch here! Joan
I have been doing fairly well, keeping very busy with my "things to do before surgery" list. Getting my "ducks in a row" has helped to keep me focused and positive. I've also been working (I'm a nurse) but have recently cut back my hours due to fatigue and time constraints. So, now that my list has been accomplished, rather suddenly I am starting feel a little blue! Huh?? I thought I would feel more settled and at peace after checking off my tasks, but it's been just the opposite. Maybe it's because I have more time on my hands? Maybe it's normal pre-op jitters? But It has completely caught me off guard, and I know it's not where I want to be as I go in to surgery very soon. I'm trying to figure out reasons, other than having too much time to think…what I can figure is that a few insensitive remarks have been unsettling, while some people have surprisingly said little or nothing, and others have over-reacted to my news in an alarmist way. I'm experiencing a sense of vulnerability that I' don't usually feel. So I'm working on getting in a better frame of mind, putting up some boundaries, focusing on faith and positive thoughts, and looking to those who are supportive. But I'm wondering about any suggestions you may have in coping? I'm not liking this roller coaster ride of emotion...
So here I am, with VS day quickly approaching. On October 16, I will undergo mitral valve surgery at Loyola University Medical Center in Chicago to fix a severely leaking MV. While I have known about my floppy mitral valve for most of my life, I have been largely unaffected by this congenital defect. I have lived an active life free of symptoms until this past July. I began experiencing increasing fatigue and shortness of breath with normal daily activity. I went for my 6 month visit to my cardiologist who decided a TEE was needed. What was revealed was a MV that had progressed to a grade 4, or severe regurgitation (90 cc leaking backwards into my left atrium). I heard those words that I knew would come "someday"…"it looks like it's time to get your valve fixed." My immediate reaction was a sense of disbelief and denial… I tried to bargain "my symptoms aren't that bad, so I can wait and do this later, right ?" My cardiologist who has known me for 15 years looked at me with a rather serious expression and responded with an emphatic "No, not unless you want to risk heart muscle damage or heart failure. I left his office reeling, trying to grasp the many implications of how this was going to impact my life and my family...
A little bit about me: I am a 56 year old recently remarried mother of 4 adult children, ages 34 to 18, stepmom to 2 more ages 29 and 26. We have just become "empty nesters" as my youngest child left for college in August. After 34 years of a hectic life focused on raising children, a whole new beginning is on the horizon. But it appears that God has a slight detour in mind first! Our plans include spending time visiting our children and 6 grandchildren (soon to be 8!). I have been a RN for nearly 35 years, and I am still working. For the past 5 years I have also been in graduate school getting my Master's degree in nursing and studying to be a Family Nurse Practitioner (FNP). Our goal is to is to travel together on medical mission trips after I graduate. I had just started my last class and was due to start my clinicals in January 2015 when I got the news about my heart valve surgery… You can see with my circumstances I am asking the question "Why now??" I guess it's a case of the best laid plans….but of course there's never a best time to have heart surgery, right?
I am searching for ways to come to terms with what I must face, and taking actions that I must take to prepare for the scary prospect of heart surgery. It has been a whirlwind of grieving, facing my fears, and reaching out to others for love, prayers and support. Hope and positivity are starting to replace some of the negative emotion. I'm trying to get myself together emotionally, spiritually, mentally, and in every other way necessary. It's overwhelming at times. I am thankful for all of you on this website because we all understand the whole experience of HVS the way others cannot. Joan
I came across a simple yet meaningful prayer in a book that I am currently reading. It seems so appropriate during this time of fear and uncertainty that I'm feeling on some days: "Eternal One, When I stand in liminality, You stand there with me. You hold my doubts, questions, darkness, and disturbances in the safe embrace of Your love. You will guide me to clarity and peace. I open the door of my heart to You. I open the door". Joyce Rupp