Joan Napier - Heart Valve Journal

Bob M God bless!

Joseph Ballett Nice picture with all the young kids.

Tammy Pilcher Beautiful grandkids, Joan! You are blessed!

Elaine Foster How wonderful!!

Cheryl Batzing what a blessing to be surrounded by these sweet ones!

Joan Napier Thanks everyone! I do feel blessed and they are helping lift my spirits during recovery. But it's hard not be able to hold them at this point…they're too active and too many sudden moves! :)

Lenore Mitchell Wonderful grandkids! And you're looking great. How are you feeling? Your coagulation issues sound challenging. I don't have the same issues, but they put me ... Read more

Surrounded by little Angels, Joan! :) What a great picture. How are you doing? I am sure you are taking good care of yourself. I hope most days are going ... Read more

D. Carol Moore Beautiful picture, Joan. Those darling little ones are angels surrounding their grandma.

Janis Kielbasa Joan, you look amazing. Such a beautiful pic surrounded by those sweet grand kids. Continued recovery and get well wishes sent your way.

Joan Lovell What a good looking happy family. You look realy good.

T Minus 3 Days to HVS! Here's an Update...

Journal posted on November 7, 2014

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

Like | Kathryn Waymire and likes this

Surgery has been postponed!!

Journal posted on October 14, 2014

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

Like | Gregg L and like this

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

Like | Nancy D, Joan Napier and likes this

Two Weeks until "VS Day"...

Journal posted on October 2, 2014

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

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That's nice Joan. Thanks for sharing.

John Noriega Thank you. I believe in the Power of Prayer. Everything we do or that is done to us is guided by a powerful Lord in our life.

Ruth Valenzuela Simply beautiful and profound...

Janise Mc Hi Thank you for this great prayer, I have the same leaky valve, I am very close to surgery also. My hugs and prayers are with you when you get your surgery. ... Read more

Joan Napier Thank you for your kind words of support, Janise! I greatly appreciate your prayers. It sounds like we have much in common, and I am here too if you need an ... Read more

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