Tammi's Journal

Lisa Fuller and her family have been on my mind and in my heart so much these past few weeks. So much so, that I felt the need to post. As the days draw closer to my one year anniversary since OHS to replace my BAV, I can't help but think of Lisa as well. To Sarah (Lisa's daughter), John and all of her extended family and friends, I pray for extra peace, comfort and love to surround you even more so during these days. Even if there is no one receiving her posts for this site any longer, I want it to be shared and felt throughout this heart valve community. There is no doubt that there are many others on this forum who have kept Lisa in their hearts and her family in their prayers. She is not forgotten. Thank you for continuing to shine your bright light on us heart sister! ♡

Yes! Almost 9 months post-op and I'm proud to say that I get to celebrate another year of life in this body of mine. I've never felt so happy than to live 45 yrs young. Hard to believe that just shy of one year ago I was learning that it was time for heart surgery. At that point, I didn't even have a chance to really wrap my head around the idea of a "congenital heart defect" and the impending doom that lie ahead before I was told "it was time". Heck. Looking back, it was probably best this way. Anyways, this time last year was all such a blur...such a whirlwind of emotion...not at all what I was expecting or prepared for. But God does that once in awhile doesn't he?! It's that sudden reminder that you're not in the drivers seat. (Fyi, those who know me well, know I usually like to be the driver...even when I'm not always the best driver.) He's good at shaking things up and putting things back into perspective lIke that. ;) As I sit back and reflect on all that has gone on this past year I am so, SO grateful for this wonderful gift of life I've been granted. AGAIN. Despite the fear, pain, frustration and set backs I have struggled with, I've learned even more about unconditional love, gratitude, perseverance, humility, trust and faith. And that's really the true gift we are given heart brothers and sisters. IT'S ALL ABOUT THE JOURNEY. I pray God continues to bless you all and give you the strength you need to proceed forward in health, life and spirit. I am truly grateful and blessed with each passing day and clicking heartbeat. ♡ Yes! HAPPY BIRTHDAY TO ME!! :)

Hello heart family. I am now 8 months post-op from aortic valve replacement done via mini-sternotomy. Other than a few hiccup's along the way with cronic Pericarditis, I have been doing good and healing well. However, in recent weeks I have noticed a significant increase in sternum popping, cracking, aches and pains. I also found a hard "bump" or protrusion in the middle of my sternum. I have an appointment with my surgeon later this month to get to the bottom of it, but curious if there are others out there who have experienced anything similar?? I just find it odd that it's happening now. I'm not sure it's relevant or not, but I have been doing a couple furnitue refinishing projects as of late. Clearly, I didn't think doing a little sanding and painting would cause any issues at this stage of the healing process...confused & a little frustrated.

Question to my fellow heart brothers & sisters...I know many often talk about numbness in their hands or fingers after surgery, but has anyone ever experienced it in their chest muscles? I have had numbness on my right side (approximately a 2-3" radius on my right breast, near the incision area) since my surgery. I wasn't too concerned about it as the Drs said it is common after surgery to experience some numbness and that it just takes time for all the muscles and nerves to completely heal. A few weeks ago I started to notice the feeling coming back but almost immediately started to get twinges of pain in the same area. I chalked it up to the healing process and continued on with my recovery and day to day activities. For the last week or so, the pains have become extremely worse. I describe them more as sharp, stabbing and "take your breath away" pains. It occurs when I'm doing general day-to-day activities like opening the curtains, buckling my son into the car seat, bending over to pick something off the floor, using my arms to get up from sitting or lying down, hugging a friend, etc. At 14 wks post-op, I feel like I've regressed to getting out of bed using a pillow for support and in need of pain control. I'm nervous about doing things around the house that I've gotten used to doing again - including lifting my son. I went to see my cardiologist and my surgeon's nurse today. They ruled out any issues with it being my heart, pericarditus, sternum and incision area but we're unable to pin point a diagnosis or treatment to fix it at this point other than Ibuprofen and dry heat. They did say another possibility might be that a nerve was damaged or pinched during surgery or that one of the wires used to close the sternum might be rubbing or irritating a nerve or muscle. (Neither of those sound good...) Would love to know if anyone has ever experienced this and if so, did you find relief/answers??

Today marks my 12 week post-op anniversary!! For the multitudes that have gone before me can attest to, this is a big day. It is the last big hurdle of many –assuming recovery has gone smoothly of course. It is at 12 wks that the weight & lifting restrictions cease because the chest plate is supposed to be fully healed. I most definitely want to honor and celebrate this day. Not just because I am officially free to lift and carry my 4 yr old son again, but also because it is another big step in this major, life changing, emotional and –after deep reflection– uplifting event. In all my previous journal entries I’ve tried very hard to stay positive. Even when I was scared as hell, felt isolated in my journey, frustrated with limits, pain, and post-op complications, I still tried to put on my positive attitude and suck it up. Now, don’t get me wrong. I’m all about keeping a positive attitude, but what I don’t have recorded in my journal is many of the struggles (and inner breakthroughs) that have made up MY heart journey. I don’t want to lose site of what it was that I experienced –good & bad. As I heal and feel better (a major hooray), I’m finding it more common to catch myself throughout the day forgetting about my pains or that I have a scar until I do something to strain my chest muscles or get a glimpse of my reflection in the mirror. I know most would say this is a good sign. But I believe there is something bigger that needs to be kept alive in my heart. There is so much more to my story that I don't want to be forgotten. The last five months have been an emotional and very spiritual time for me. I have really come to see what an amazing gift I have been given to live and learn more about myself. I’ve always been aware that life is precious, but even more so today. There is something in me that changed –and not just the mechanical device in my chest working every second of my life to keep me alive. I have come to know and realize –deep within me– that the little nuances that make up my stressors aren’t really worth my time anymore. They really don’t matter in the big picture. I really DO want to stop and take time to soak up every moment with my family, friends, nature, community and in life. I want to devote more time to God and my relationship with Him. I want to work to incorporate compassionate care and helping others more into my day to day interactions. And I want to slow down and take more time for quiet reflection and decompression (not always easy with a house full of boys). These things are all coming from a girl who has always lived a life striving for perfection and loves being a control freak. Of course, I’m still a work in progress... ;) I know this journal entry is shared publicly with others who are also going through similar experiences. I hope this helps reassure you or give you peace in your own journey. But in all honesty, this time around my post is merely meant for my own documentation and reflection incase I ever start to fall back into my old self again. I only want to continue moving forward. The list below is just that. It’s a list of memories I have lodged in my head and heart of my valve surgery and experiences to date. I don’t go into much detail here as these are just my own simple reminders. If anyone has a question about any of them, certainly feel free to ask. But for now, it’s all I need to just to list them. -It’s time -Heart Valve Surgery, the book -Adam Pick -My heart valve brothers & sisters -Now what -The gym is off limits? -My music playlist, “Hope” -My sister. My rock when I needed it most -Dear friends -Missing my Grandpa -A special dinner with my family as I prepare for the morning ahead -Pre-op goodbyes, prayers and my doped up conversations -Seeing my family & friends for the first time after surgery -Ice chips -Where’s my jello?!! -Drain tubes suck -Thank God for my heart pillow or I’d never have been able to get out of bed -Showering. My biggest lesson in freedom or lack there of -My nemesis. The spirometer -Walks around the hospital -Someone needs to design more fashionable hospital gear -Lots of talk about gas & bowl movements?! -Crazy low blood pressure -Dizziness, blurred vision, lack of concentration. Bye-bye Beta blockers -Angels in the dark. My slumber party caregivers -Click. Click. Click. Love the sound of my new life -LOTS of blood draws, vitals, meds, and echo’s -Learning the hard way about keeping ahead of the pain. Ouch -Hosptial food. Especially the heart healthy diet restrictions. Blech -Emotions. Emotions. Emotions -Awesome nurses. Awesome doctors -A mental Goodbye -The car ride home -Word of God Speak -Welcome home -My reprieve. A rented medical recliner -My mom’s love and assistance -Cards, flowers, gifts, surprise visits. Feeling the love -Stairs suck -Extreme back pain -Medications. Pill boxes -INR draws. All. The. Time. -ER visits -New pains, can’t breathe, fever -Another visit to the hospital -Pericardial Effusion, Pericarditis -A new scary -My parents. The constant fountain of strength & love -Many tears (happy, sad, frustrated, scared, hurt) -Time for a fluid tap -Healing -A frail body looking back at me in my reflection -Self pity -My wedge pillow -Gracious neighbors. Bountiful meals -Mommy has a crack -My warrior scar. My badge of honor -Echo clear. See you in a year! -An emotional visit back to hospital to deliver thank you's -Driving again! -Cardiac Rehab. 8 weeks of a new normal -Pam & Phyllis -Amazing volunteers -My new heart friends -My husband. His love, patience, endurance, and for picking up all the slack -Fitbit Charge HR -A new heart healthy -Yes, I can still have my wine & eat my vegetables -A healing body looking back at me in my reflection -Self determination -Meditation -Reflection -Peace -Gratitude -Love, love, love -It’s time for easing back into the world as a healthy heart patient!! And as always…God bless all my heart brothers & sisters. I will continue to pray for peace, strength and an easy recovery for each and every one of you. You are always in my thoughts!

It's hard to believe that eight weeks (24 sessions) of cardiac rehab Is complete and now checked off my list of recovery "to-do's"! I am so glad I had the opportunity to go. At 11 wks post-op, I feel very confident about going back to the gym now (which I've been doing on my days off of rehab) and getting back to regular workouts. The nurses & volunteers were great - always smiling, joking and taking good care of us. My fellow classmates came and went but I loved hearing each of their individual heart stories. Despite being the youngest participant, I felt very much a part of a unique group of warriors. I will certainly miss it for sure. Who knows, maybe there is a future for me in cardiac rehab volunteer service some day?!

Thinking of my heart family today! Hug someone special to you or at least make sure to stop and give thanks for those that make you smile or warm your heart. :)

I know many have spoken here about the emotional effects of heart surgery (including myself). Sometimes it's hard to reel in the overwhelming feelings or even try to describe how or why they come about. It makes sense that we are scared initially as we prepare for OHS. We get sad or frustrated with pain or minor set backs in the healing process too. But on the positive side of these emotional outbursts is in the form of gratitude. It's seeing what an amazing opportunity we've been given to a longer, heathier life! I had a follow-up appt at the hospital with my surgeon yesterday (which went great, btw) and beforehand I wrestled with what or how I could truly thank this man that literally saved my life. I felt that any gift I bought just wouldn't cut it. After much consideration, I opted for just a card so I could attempt to put to words my appreciation, respect and deepest gratitude for all that he had done for me. I also wanted to deliver a card to the nurses who took care of me. Some of them were true angels and genuine caregivers. Well, it's really no surprise that I broke down in tears walking back through those halls of the recovery ward. The emotions overtook me once again (just like they did the day I was discharged). It's not a bad thing, really. I realized it was a reminder that God gave me a second chance and he put the best team in place for me to succeed. He surrounded me with loving family & friends and led me to this amazing heart community. He also instilled a fighting spirit within me to press through this experience. Nothing in life is ever easy. And nothing should ever be taken for granted. I guess that's why I got so emotional leaving the hospital once again. Oh well...I'm going to embrace my tears of gratitude and wear them proudly. :) Onward & upward heart family. May God bless each one of you on your own heart journey...and don't forget to embrace gratitude. ♡

Today I had a follow-up visit with my cardiologist who informed me that my latest echo revealed some great news...All the fluid that had been surrounding my heart is now completely gone!!! (Happy Dance!) I will continue on my meds for another few weeks to keep it at bay for now (and hopefully the long haul), but I can manage that. My stabbing pains and shortness of breath episodes have been greatly reduced -if not totally gone! Hard to believe that just a week ago I was having a needle stuck in my chest to remove possible life threatening fluid around my heart and here I am today feeling a world of difference. In just 7 days I've gone through every emotion imaginable. I literally felt defeated, deflated, and deeply depressed at first. I mean, let's be honest...you have your chest cut open, your heart fiddled with, you feel run over by a truck and STILL they continue to poke you with needles, wake you up constantly, and send you home a wounded soldier. But you get through it. You manage to push through each day somehow and slowly see mini progresses. The day before being re-admitted I was ecstatic about the fact that I had accomplished my first shower ALL BY MYSELF!!! At 2+ wks post-op, I FINALLY could wash and dry my own hair! (Yes, another Happy Dance here.) So it's no wonder that feeling the regression of physical progress, new pains and another visit to the hospital had me upside down emotionally. Thank God for my family. They have lifted me up and fought my battles with me holding my hand and loving me even when I was an irrational puddle on the floor. But good news! It DOES get better!! Two days ago I magically woke up and felt rejuvenated. I did nothing different. It was just a matter of TIME. Time really does heal all wounds! (Happy Dance!) Of course, I'm clearly not finished with this recovery challenge but I'm going to take my positive progresses and celebrate the heck out of them. That's all we can do -and SHOULD do. We deserve it. I was also told that I can start cardio rehab ASAP and focus on getting life back to normal...Hallelujah! (Happy Dance!)

Got to come home this evening after a long and not-so-comfortable weekend stay at the hospital. Feels great to be home again!! Drs did end up performing a pericardiocentesis yesterday to try to drain fluid from the pericardium (the outer sack that protects the heart) after I was diagnosed with Pericardial Effusion and Pericarditis. Unfortunately, they weren't able to relieve much fluid. But the good news is the fluid had already begun to clot and absorb on it's own. It was also determined that the effusion was not constricting or harming my heart in any way. Great news! So as it stands, they sent me home with some anti-inflammatory meds and put me on watch to ensure this continues to heal rather than flare up again. A few more echo's are in my future but that's ok by me. Looks like cardio rehab will be pushed off for bit and my post-op limits are back at square one again. But always better to be safe than sorry. Thanks for the continued support heart family. ♡

After another echo, a group of cardiologists have determined it is best to drain the fluid from around my heart. It hasnt gone down since Friday and from the sounds of it, it's a significant amount (which is constricting my heart). The plan is they'll insert a needle in my chest to drain. My INR needs to be under 2.0 (it was 2.1 yesterday) so hopefully it is low enough today to do the procedure. My chest discomfort haa gotten worse so I'm ready to proceed.

What I forgot to mention in my previous post was that for the past week I've been getting a low grade fever and chills in the evenings. While they have been annoying, they really weren't anything to call in about. But shortly after I posted my last journal entry my fever spiked up to 102. I was able to get it down before bed but decided yesterday that it was time to notify my primary Dr and surgeon. After a full day of tests, an echo revealed that I have moderate Pericarditis. I was admitted back into the hospital for the weekend to monitor it and my symptoms and re-evaluate on Monday with a new echo. Turns out the extra pains I'd been feeling and lack of energy wasn't me just over-doing-it or being dehydrated. Go figure. Hoping things clear up soon and this doesn't become more than it is already. I don't enjoy being back in the hospital but glad to get some answers. Now we just watch and wait I guess.

Hard to believe it even as I type it. Despite the fact that this all still feels so fresh, my hospital stay seems like a distant memory already. That whole 6 days feels like such a blur (well, except the pain and soreness). It's been so nice to be home resting in my rented recliner! {Tip#1: Rent one if you can. They are awesome.} So far, I've been lucky enough to escape any serious bumps in the road since my arrival home. I did visit the ER as a precautionary due to dizziness, blurred vision and pain in my right side. Other than being a bit dehydrated, all checked out OK though. We are still wrestling with regulating my INR so I've been in for frequent blood draws. Not fun, but not horrible. After OHS, a blood draw seems like nothing. I am looking forward to it becoming a once-a-month thing at some point though. On a side note, I delegated my husband the job of managing my medications - to which I accidentally received a dbl dose of my Warfarin last week. No blame really, those discharge directions are confusing. But he has since been fired. ;) {Tip#2: Manage your own meds and get a pill box organizer!} Balancing rest with getting up and moving has been a little daunting for me. I find I'm comparing myself with others here and often feel behind. I'm trying to work on listening to my body though. I remind myself I've got the rest of my life to do laundry, run another race, or get to the store. {Tip#3: Listen to YOUR body and YOUR Dr. Your pace is your own. Give it time.} My last real hiccup has been the emotional thing. Boy, I am definitely riding a pretty intense rollercoaster. I cry at the drop of a hat. Happy, sad, sore, frustrated, thankful, blessed...you name it. {Tip#4: Be gentle with yourself and be OK with your emotions. They are normal. And beautiful. And human. You are alive so celebrate it.} My family has been SO patient with me and SO attentive. I honestly can't imagine having done any of this without them. And my friends...wow. They have come out of the woodwork with crazy love and support. {Tip#5: When Adam says to rally your support group and allow them to help you, listen. It's far better medicine then even those narcotics they have us on.} Meeting with Cardio rehab next week for my initial assessment. Looking forward to that. Thinking of you all and sending continued prayers for those preparing for surgery as well as those at different stages of recovery. This site has helped me out immensely and I will do my best to continue its legacy. Onward & upward heart family.

Hello heart family. I've felt a bit distant these last few days and have wanted to post but it's been a whirlwind of activity since surgery and frankly, this healing stuff wipes you out! Each day I'm getting a little bit stronger. I am doing my daily walks around the halls of the heart recovery floor. They also have me practicing stairs too since I have 16 of them to get to my bedroom at home. Its crazy how fast they get you up and moving after OHS. My mini sternomony incision site actually looks great. The body is an amazing thing! Overall pain has been manageable but I have had a few rough bumps here and there. The nurses are great at helping in that area though. It's learning to not over-do-it that already has been my biggest downfall...my body quickly puts me in line. Drs say my new St. Jude mechanical valve is doing fabulous and my heart has returned back to a normal healthy size already. Yay! I heard my valve "clicking" for the first time just lastnight. Its not as bad or as loud as I thought it would be...I actually kind of like it. And it's not like you hear it all the time either. I was told yesterday that I most likely will be staying a little longer at the hospital until my blood thins a bit more and my INR moves up. I was 1.3 and need to be at 1.7 before I can get discharged. Drs are not sure how long it will take yet as it can be a tricky balancing act in these first few days so we'll see what the say this morning during rounds. Hoping and praying I will be able to go home to my family soon but thankful for the expertise and 24hr care I have while being here. I've been thinking of all my heart family both post and pre surgery. You've continued to be in my prayers. I will post more details later but have to say, you've all been pretty accurate with your descriptions. I haven't had too many surprises!

Well.. Tammi has made it through 20hrs post surgery with normal pain and a little low blood preasure and now has had her Christmas Tree downsized as they removed her IV from her neck and arm. The nurse feels with Tammi's minimal draining that her chest tube might get removed today. Tammi is ready to move up to 5th floor as long as a room is open. She is such a trooper sitting up in the recliner again and has been drinking on her own mostly.. Thank you all again for your continous prayers.. love ... and emotional support as Tammi starts down this new chapter in her beautiful life...

Updates from Tammi's husband Kraig: 12:28pm I am sitting with Tammi now. Breathing tube already removed.. She is in a little pain which they said is normal. . She was awake when I came in and is now already in a deep sleep. soon she will be ready to see family once she wakes up. 2:56pm My beautiful wife is amazing. . She has now sat up.. stood up... and shuffled 4 to 5 penguin steps.. and sat down in the recliner. .. Though it was clearly painful. . She made it with flying colors. .. She is much more relaxed falling asleep while talking with her sister. . She is hugging her heart pillow and is resting much better now and is not waking up with noises. . This is good.. Next battle is the speromitter...

This is Tammi's sister, Traci. I'm happy to report that after 3 hours she is out of surgery and everything went well! :) The surgeon said it went very "routinely" and her heart was happy and ready to beat again. She is in ICU and we will be able to see her hopefully within an hour. Im grateful to post this news on her behalf and to personally get to thank all of you for the amazing support you have given her over the past few months. Thank you so much from the bottom of my heart ❤️ Updates to come!

Interesting side note before I go to bed to wake up in 5 short hours to head to the hospital for HVS... I went to dinner with my family tonight to enjoy a delicious meal and share time with them before the big day. As we were finishing up ordering our food, I heard a table of 5 gentlemen talking directly behind me. I faintly caught snip-its of their discussion..."Heart Surgery"...and, "Mechanical Valve" where involved. I leaned over to gently interrupt, telling them I'm getting a new mechanical valve myself bright and early in the morning. They were shocked - as was I!! What a crazy coincidence!! Well, I say that lightly as I really have never believed in "coincidences". Everything and everyone are divinely intertwined. I was meant to bump into these gentlemen just hours before my surgery. Just like I was also meant to find this amazing heart family and Adam's book. God has a plan for us all and like it or not, valve surgery is part of our journey. Adam...I too found a couple extra guardian angels tonight, just as you did that evening in the restaurant. :) Love and blessings to all who are taking the time to listen to my rants and send their words of encouragement and prayer. I'm ready.

Things are coming together for surgery tomorrow! My medical-grade recliner rental was delivered and set up today in preparation for next week's recovery. Also, I just got a call that surgery got bumped up to 8 am tomorrow morning vs. a 12:30 pm start. Might as well get the show on the road earlier than later, right?! Looking forward to having a nice dinner with my family this evening before packing my bag and enjoying a nice relaxing antibacterial shower tonight. ;) Thank you heart family for your continued thoughts and prayers. I have found great comfort in your words and encouragement. I'm excited to be reporting back to you all in my own words on the other side of this soon. God Bless!!

Today is a new day...a new year...and 6 days before my OHS to replace my stenotic bicuspid aortic valve. What better time to do a little reflecting as I close this chapter and get ready to start a new one. As in years past, its been easy to do this with a semi-determined resolution (eat healthier, exercise more, lighten up, better my relationships, etc...), but for obvious reasons this year it's a little different. For all of us on this site, heart surgery can be both a blessing and a curse as we each battle the mental and emotional struggles of coming to terms with our diagnosis, getting hold of our fears, and then learning to jump in "all-or-nothing" with confidence, hope & faith. The highs and lows are daunting at times but without my doctors, todays technology, my family & friends, and my new found heart family, I truly don't know what I would've done these last couple months. I've had a really hard time trying to find the words to express my sorrow for the passing of our heart sister, Lisa. I had been following her closely from the beginning and have been praying hard for her. As like most, I was watchful for any and all updates on her progress. I've shed many tears for Lisa and her family while she endured so many procedures and yet never stopped the fight. I know I never knew her on a personal level, nor did I ever meet her face to face...but I really felt a connection with her (and her heart journey) and my heart is truly breaking for the loss of such a strong, amazing woman and for her family & friends who are coming to grips with it all. I certainly can't press forward in my own personal journey without stopping to pay tribute to her. I will be sure to take her memory and her fighting spirit with me into surgery next week. I've been trying to come up with a bucket list of things I want to do with my new healthy heart and "second chance" once this heart surgery is over. I kind of thought that going into this I'd have a whole list of crazy things I'd like to experience. Maybe it'll be different after I come out of this on the other side of surgery, but truthfully all I could come up with were the same things I always look to change in a new year...eat healthier, exercise more, lighten up, better my relationships... except this time it seems clearer, I'm more determined and it resonates more with my soul. I'd also like to add to this list...find happiness in the little things, live & work passionately, and grow my faith. Sounds so simple, right? Well, it might be but life, "things", and the day-to-day "stuff" tends to cloud our minds a bit. My goal is to try to keep a clear head and a thankful heart of what a blessing it is to be given this new lease on life. I'm aware not everyone is lucky enough to get an opportunity like this so I sure don't plan on wasting it. Cheers to all of you for a blessed new year!