Marci's Guestbook

Certain types of blood pressure meds can cause dermatitis, red face, etc. It took a year for my brother to figure out what his problem was....actually he went into cardiologist when his rash was really bad and the cardiologist took him off one type of BP med and put him on another one. My brother is ok now.

Once again Marci, thank you for the update on Victor, I have been so worried. He will remain in my prayers. Can you please tell him that my thoughts are with him. When I first joined this community, he made me feel so cared for at a time when my own family couldn't be bothered and I was feeling so disappointed in family and friends and felt so alone. I will always cherish his kindness. I will continue to pray for Victor. I am happy that his heart is doing well and so sorry that he now has to deal with this other problem. Blessings to Vic and also to you Marci for taking the time to post updated information on Victor. Thank you!!!

Marci, Thank you for the updates on Victor. Our heart village will continue to pray for Victor and all our brothersvand sisters. Good to hear his heart is good. Have a great day! Love from your heart sister

Hi Marci. - I have been overwhelmed with well wishes and kindness of friends neighbours but so hurt by one daughter who just doesn't seem to care. Its almost a coldness that mum just needs acknowledgment that I could die. Yes have not shared this blog as it has let me share thoughts freely. Will be thinking of you and Victor for healthy recovery.

Marci, As you stated we are neighbors. I WILL ask (demand) to be referred to the Dr. who did your procedure. I feel so badly for you, in what your friends didn't provide to you in support. :-( .. I'll hang with you! hehe I have so many questions for you ... but will say congrats on getting through it. I bet you're a stronger person than ever! I so want to have a coffee chat with you! 1000 questions. (Tomorrow I will know more on my own case.) Hope to hear from you!! Best regards! RV

Hey Marci I'm really sorry you feel so let down by some of your friends. I've had a few friends who haven't been in touch despite being aware of how badly my surgery went. Because I was so desperately ill, I have just tried to be pragmatic about it and leave them be. If they aren't there for me now, then I will focus on the people who are. I hope the hurt fades and you can enjoy those who are there for you. It's hard when you aren't well and you have time to think about everything.

You are right that you find out who your friends are. You can vent anytime you want. It is good for me to read the experiences of others. I had my bicuspid valve replaced on 1/9/14....so a month after you. take care from St. Louis

Dear Marci, I just read your journal entry you posted today regarding friends who weren't there for you. I had Mitral Valve Repair surgery almost 11 months ago and can say that I went through the exact same thing. I even had close family who let me down as well. I was angry, upset and disappointed because I didn't understand how these people that I considered good friends never called or came to visit me in the hospital or when I was recovering. They did nothing to help support my husband and children. I finally had to let the anger go and focus on the dear friends and family who were there for us. I have talked to other heart patients and found that they experienced the same thing. It's very unfortunate that this happens and all I can say is that during a major health crisis you truly discover the "real" friends and loved ones who stand by you. On another note, you mentioned that you were glad you never shared your journal entries with these individuals who let you down. I have to tell you that all anyone has to do is Google your name and they can see every post you've written. I thought these journals were only accessible to friends and family we gave access to. So be careful what you say because if it's written on the internet it is accessible. I was very upset to discover this fact and have since stopped updating my journals on this site. It's a shame because this is a wonderful place to share your feelings with others who have experienced heart problems. Take care,

Hi Marci, I haven't been active on this site for quite some time, but today I saw your most recent post and I just had to write to you. I had my mitral valve replaced at St. Luke's Hospital at the Plaza in KC on Jan. 14, 2010 - it will be 4 years on Tues. next week. I live in Overland Park and have grandkids at KU, so we're neighbors! I know what the post-surgery blues feel like. Being cooped up during the cold and dreary winter months while you're healing makes it even worse, as I know from my own experience. Cardiac rehab is the best thing you can do to beat the blues. It got me out of the house and around people who could relate to my experience, and got my endorphins going - which I really needed! I've never been an exercise freak and I'm really good at finding excuses to avoid physical exercise, but I actually looked forward to doing cardiac rehab once I started. This past year I even went back to it for a period, to keep my husband company while he rehabbed, after he received a couple of stents. Anyway - there is life beyond the blues and as you continue to heal and get your strength back, I bet you'll feel way better than before surgery (speaking from my own experience again). I found it really helps to stay in touch with other people going through the ups and downs of the open surgery experience. Adam's site is an excellent resource for before, during and after. So, hang in there, Marci - I hope we can stay in touch!

Ah, Marci, out of sync, no man's land. Yep, we have all been there and it ain't fun! What I can tell you that is truly positive is that it is only temporary. This will pass and you will actually only remember it as a distant memory. What helped me was to focus on recovery-walking, exercises, cardio rehab now, rest. It all works out in time. The body really is amazing as a healing organism. Plus, during this time, be your own best friend. Tell yourself what you'd tell your BFF in the same situation. Heal we'll, my Kanas friend!

Marci, Good to hear from you. I feel like we have a lot in common, especially both of us being in the'real Midwest'. My wife was going to stay home a little more but it is chaotic at our work. So she leaves at 6 and gets home around 6 or 7. I haven't gotten bored yet, but I'm sure that day will come. I'm hoping that cardio rehab breaksp the week, but not sure who will be taking me - it's less. Than a mile from our house, but I don't think I will be able to walk with the weather. When we built our house in 1997, we made all the critical stuff one the main floor. Both for us and my mom who lived with us for 5 years. Our daughter and grand daughter were here for most of the first week home. That helped to have someone to talk to. And my brother and sister-in-law spent the last two Friday afternoons with me. Riding in the car with my wife running errands and even the short trip to the doctor helped with spending quality time with her. Hoping to have her take me somewhere this weekend. My usher team from church are stopping in Sunday after services. Looking forward to that. I spend the day in the recliner, but sleep in bed at night, even though getting up is the hardest part of my day. So did they not have to replace your aorta valve? Did they just wrap your aorta? Just curious how they did it w/o stopping the heart. No more Chiefs games this season. Still can't believe that lost by 1 point. Oh we'll, time to start watching KU bb games. Vicki and I watched the tv article about the bb teams getting new dorms at KU. She drove there daily from Overland Park in the early 80's, and commented on how bad they were back then. When I read others journalist seems like few knew they had a bad valve from birth, unlike us. Good rambling with you...

Marci, Listen to Carol, she has been there and done that. She gives good advise and really knows what you are feeling. I am afraid I am pre-op and so do not totally know what you are feeling. Adam, the founder of this website wrote a book (hope you got it) and he went through a depression period during his recovery. Rehab helped him get past it. Hang in there and you can always let the Community know what you are feeling.

I understand. After I got home from surgery my husband went back to work, my daughter returned to her 1st job out of college in Denver so couldnt come home, and my mom at 89 was not able to help me. Before my surgery I tried to let all my friends know about my surgery. When I started feeling better I started calling my friends and asking if they could pick me up to go to lunch or go for coffee. Some of my friends were working, so they would stop by after work for a little visit. That really helped. Cardio rehab REALLY helped. I could talk to others who were recovering also and and cardio rehab nurses were wonderful. Also just corresponding with others in this community really helps too. I hope this helps.

Marci, sounds like you had the "ups" and "downs" in your hospital stay and also sounds like they took good care of you. Yes, it is over and your life can begin again. You are in full recovery mode and slow and steady is the motto. Take care and keep up the good work. A very Merry Christmas to you and yours.

Marci I am glad you are doing so well at home now. You sure had some interesting hospital stories, a few hair raising! I am glad you managed your way thru them all. Happy holidays to you all and here's to the next chapter of your life!

Hello Marci, I had my calcified bicuspid aortic valve replaced in August of this year. I have recovered very nicely and now feel better than I ever have. It is normal to feel concerned but know I and many of others have had this exact surgery this year. We are doing well and here to help you through this. And kudos on getting a recliner. I did not get one until a few days after coming home and it enabled me to sleep. Prayers and best wishes.

Hey Marci As they say, "you have got this." You are doing a great thing for your health. Try to keep busy and focused on positive things these next few days. This approach helped me to avoid anxious and negative thoughts which really were not needed or helpful! All the best.

Marci! So I finally was able to take a moment and sit down and read through the beginning entries of your journal. Where can I relate? Uh, to almost everything!! When I went in for my surgery consultation I was a bit underwhelmed. I did not really possess much emotion just annoyance. When the surgeon finally came to the topic of stopping my heart, I felt my body immediately shift from emotionless to extremely responsive. I was ANGRY sooooo very ANGRY. I think it all had finally clicked for me as I was in a denial state of mind prior to meeting the surgeon. Over the past couple weeks, I have felt better. More in control of my feelings as each day passes, but still have my breakdowns. I am trying to show my strong side, as when I look back on these days I do not want to feel like I was defeated by my emotions. You envisioning the day of your surgery, or rather moments before going in I am thinking is quite normal. I have done this myself, I have also thought about it too much to the point I dream or rather have nightmares on occasion. I like your attitude regarding Christmas. The holiday has helped me keep my mind off what is to come in 13 days. I will keep you in my thoughts as we will be going through similar situations in the coming weeks. Stay positive and I shall be in touch again!!

Marci I am there with you as I prepare for similiar surgery in the next couple of.weeks. I also have three wonderful teenage daughters. Please remember that these surgeons perform this type of surgery every day and you have to have faith that you will be healed. I am.sending lots of positive thoughts and prayers!

Marcie Happy thanksgiving to you. Glad you are working on staying busy. I can confirm that busy works best pre-surgery. All the best as you prepare for your date.

Marci, you are blessed with a wonderful family and this Thanksgiving is special for you and for all the other people on this site. Have a great one and do as Ernie says, "stay positive".