Klara's Journal

Hi, guys, I have my echo on March the 29th to address the remaining mitral regurgitation after surgery. I am 5 months post mitral valve repair and I started working again, I finally feel like myself again. Today I baked my first sourdough bread with my own from scratch sourdough starter haha. Life is good. I will let you know the results of echo. I don't have any new or concerning symptoms, I workout lightly 3 times a week. I am wishing all of you peace and love. Keep on ticking!

Hi, my friends. Today I finished my 3 months cardiac rehabilitation after mitral valve repair. I am very grateful for having this opportunity and would encourage everyone to go to cardiac rehab if possible. It has been very helpful for my mental as well as physical health. The approach at the clinic is for every patient to receive psychologist support and that was the key of my healing. I got what I needed, tools to relax, accept my heart issue and commit to better sleeping habits. My physical strength also got better and now I have good basis for continuing work out. I have a regurgitation left of some degree after my repair which needs regular monitoring. My next echo (the second opinion) is some time in March to see whether the regurgitation is progressing but I am not stressing out too much. I can cry and be sad about it not being perfectly sealed but there are much more worse things in life! I try hard not to obsess over it and just live my life grateful for each day.
Needing another surgery in the future makes life kind of richer in a way only a heart warrior will understand.
Thinking of all of you waiting for your surgery and wishing you well

Almost 4 months after mitral valve repair for Barlow's disease with three demanding and active (but very cute) little children.
My murmur (which was absent after the surgery) got back. Echo shows regurgitation Stage II. I was quite sad when I heard it. I am waiting for another echo soon from another expert. Cardiologist at the rehab centre was very supportive and said I must focus on relieving the stress, forget about regurgitation, don't overthink, get help at home, get annual echo and live happily, just not overdoing myself.
I have been through really challenging month with very little sleep, lots of physical strain, lifting my quite heavy children and putting myself on the edge sometimes. Now I have turned new page regarding my children's bad sleeping habits with huge help from dearest Angela M. from this website! She helped me from another spot on the globe which is extraordinary! This website connected us and she helped us tremendously with her advices and support. It was very exhausting period and now thanks to the huge effort everything is better, except my heart. I am trying hard to think positive and be grateful that I am alive and well. And most of possible outcomes have some solution, que sera sera!
P.s. To all of you waiting for surgery, I recommend reading this site day and night :) it is invaluable.

I never told you a story from my surgery. As you may know, I found a surgeon, travelled 600 miles by car to Germany, payed surgery out of my "pocket", left my husband and kids behind, ready to get my heart fixed. My first surgery date was postponed because we contracted Covid few days before my supposed departure. It was a bummer but I accepted it. Surgery was postponed by little less than 4 weeks from the original date. How quick after Covid, I thought. When time finally came, my home test was negative...but possible positive Covid test once I arrive to the hospital was always on my mind and frankly I was more afraid of that then the surgery itself. It is crazy but that is the way it was. I just wanted to get it done. When I got there my rapid antigen test was three times negative and my PCR was also negative. What a relief! Due to me misunderstanding this anaestesiologist who went through the papers with me (remember I am communicating in German which is good but obviously not so good...), afterwards I told nurses on the ward that I was told by anest. to do another PCR 24h before surgery! That's what I thought she said. It was Sunday. It was a big misunderstanding...but in the end the test was done, probably only because of my demand. Test result will come early in the morning on the D day. They are preparing me for the surgery anyway...noone worrying over that test. Two days ago it was negative.

I woke up very early, slept for a few hours...you all know how it goes. Excitement and peace mixed. I video called my husband one "last time", laughing about my blow dried hair and a little bit of make up and how I wanted to "die pretty" haha. I was really at peace. They wheeled me in the pre-OR room, covered me with those warm blankets, I was soooo ready, just like Andy described. Until. Nurse came to me, leaned over my bed and said with the saddest voice ever: "Klara, unfortunately you are going back to the ward, your Covid test is positive." The feeling could only be described as a shock, my world was crushed, my mind was blank. What now? I go back to Croatia? Or I stay here until when? Test could be positive for weeks... I was so disappointed, sad, numb... I was speechless. In German and in Croatian haha. Then the cheif anaestesiologist came. My hero. It is with such confidence and superiority that he handled this situation. My viral load on the PCR was so small, I recently had COVID, had all the shots...he contacted infections disease doctor and together they agreed we should proceed with the surgery. All of that happend so quickly. They started putting iv., continued preparing me like nothing happened, and soon it was time for the mask with oxygen and for me to breathe in the mask... But I was in such a state of shock that I said "wait wait - I just need a minute to process all of this, what just happend" and I started crying... Anesthesiologist said: Okay okay, relax, think of the one place you would most rather be at right now? Probably thinking I would say Bahamas or something like that... And I said : "Germany, Leipzig Herzzentrum, OR." All of the staff started laughing, including me, laughing through the tears, I fell asleep... Next moment I open my eyes and hear those amazing words "it was a successful repair..."

Specific problem. Little available medical data on it. Does anybody, especially younger patients, stressed, sleep deprived (told you it's specific :) have dyspnoea after sleepless night? I'm not talking about tiredness and crappy feeling, but real objective shortness of breath after nights with multiple wakings (by babies in my case) and too little hours of sleep? I experienced it before the surgery and contributed it to my valve problem. But now after surgery it's the same. If I have a good night I wake up breathing fine. But after bad night I have visible shortness of breath (especially in exertion) which becomes less and less during the day! And in the afternoon I feel ofcourse supertired and drained, but interestingly not so much short of breath anymore...  At the time of dyspnea my lungs are clear, puls regular... I don't suffer from opstructive sleep apnea... Scientists say there is a neurophysiological link between sleep deprivation and respiratory muscles and inspiratory indurace...but it is all still unclear. Anyway, I can't wait for my little ones to start sleeping better 🙂

Hi guys, 6 weeks since surgery. I am feeling fine. Pain in shoulder is almost gone. Paroxysmal Afib is now my concern, I am having them for the last two days multiple times daily. I hope they will subside with time, it is still early... I am trying hard to accept all of this, as Danielle described in her latest post...

My kids are so beautiful and I love them but they are taking so much physical and mental energy and play a role in triggering Afib. My mother in law is helping so much but even if I had all the help in the world, I am still their mother and irreplaceable and have to deal with their needs, tantrums, providing them with much love, cuddling, especially since this is critical time in their childhood (5, 3 and 1 and a half years old)... That is bitter sweet cross I have to carry in this postoperative vulnerable and crazy period of my life. Hope remains that it will all get easier with time!

I am soon starting cardiac rehab and I can't wait because now I feel like I am stuck in my progress. But at least it is not worse :)

Good luck everyone and thank you for your support

Hi guys, 5 weeks today, pain in right thorax is overall better (it is definitely worst in the evening), my weird drainage wounds are slowly healing, I walk each day (I try 2,5 miles). While I walk alone I feel great and I feel I can walk even longer than 2,5 miles... but the other day when I walked and talked, it was a bit harder to breath, my sentences were fragmented, at one moment I had to stop and sit, it was a great reminder of my ohs, a "sober up" moment... All the other days I walk alone and feel like I am on the top of the world haha. 
I had one short episode of Afib the other night. There was a lot of excitement and a bit of stress that day so I wasn't that surprised (even before ohs heavy emotions were the trigger). All in all, I feel good and I am grateful for everything, sometimes it all feels like it was a dream? I wish everyone facing surgery soon good luck

4 weeks post mitral valve repair. Feeling good, taking it easy. Still having night sweats and pain in my right thorax. Drainage wounds slowly heal, but it will take time, prediction is 3 months. Cardiac rehab starts on November 21st.
Greetings from beautiful Croatia to this lovely community!

3rd postoperative week after mini thoracotomy mitral valve repair. 2 drainage wounds complete dehiscence is my only complication so far, thank God. According to surgeons, it happens very rarely. Don't know why I was the lucky one, maybe I mobilised my arm too soon. Anyway, I am going for wound cleaning and a new dressing every 2 days. Since today, I think it started to improve a bit. My chest look like I took two bullets haha. Surgeon says healing will be long and scars would be ugly. I don't care about the scars, my only worry is potential endocarditis. I know statisticly chances are low, but the fear is irrational... Otherwise I am really good, I walk alot, now and then I get tired and have shortness of breath but that passes soon. I still have pain in my thorax, some areas are numb, some hypersensitive, it's still hard to sleep. All in all I feel very grateful. I hope this is new chapter in my life, kids are slowly growing up, no more maternity leaves, hopefully no more hospital stays, no more those pre-surgery anxieties, no more 'what ifs'... That is my hope, but who knows what future brings. 
I am thinking of all of you havin this surgery soon and hope for the best outcome! I am also thinking of all of you heart warrior veterans who helped me so much during my journey with your advices and encouragement! You are my angels and I thank you.

Hi guys, it's my 16th postoperative day. Today I went for deep surgical cleaning of the two drainage tubes wounds (necrectomy). There is no sign of inflammation and that is the most important thing. Cleaning was super painful as the wounds are quite deep and there are a lot of nerve ends involved. He did put a little bit of local anesthesia but overall it was Balkan style, bite your tongue and accept haha. I was shaking afterwards and felt exhausted physically and emotionally but now I am better... Plan is to put secondary stiches as soon as swabs come sterile (fingers crossed). It is a hurdle in a road, but I am grateful it is still nothing serious and hope it remains that way. I rationally tell myself: there are so many possible serious complications...thank God mine is only this little one. Good luck everyone, I am thinking of all of you facing this battle...

2 weeks postop. I feel fine, I breathe much better, still no Afib, anemia is rapidly improving, I have a lot of appetite, I live on a third floor without elevator and I can climb with less and less stopping. I walk every day. The only bad thing is that my 2 drainage wounds or should I say holes at this point, unfortunately split (dehiscence is the term). One is worst then the other and that one is mildely inflamed. Today I went for a mini surgical cleaning (scraping I should say) of this deep wound and now it hurts alot. My pain tolerance is low so bear that in mind. I am on antibiotics just as a precaution but I must say I am terrified of potential endocarditis. Wounds are now gonna heal more slowly but I must think positive. Heart is fine and I feel fine, no fever or anything, no shortness of breath, no arryrhmia etc. and that is the most important thing! I still enjoy reading all your posts and updates! Good luck to everyone facing surgery soon. Apart from the first horrendous 24-48hours with drainage tubes, the rest is really not that bad and it is magnificent how fast body heals. 

I safely arrived in my homeland, beautiful Croatia. I was travelling on my 8th and 9th postop day. On the first day we drove for 6h, then slept in a hotel, and second day for 5h. It wasn't as bad as I thought it would be and that is thanks to the fact I did lie down on the back seat every now and then. I had two large pillows and a blanket. I made like a little bed. I know it wasn't the safest option... But I couldn't have sat all the way. Sitting was possible for 2 or 3 hours tops. We stopped every two hours to take a walk. Pain in right thorax (I had mini thoracotomy) was and still is pretty high (5-6/10). It is managable with drugs, but it is never 0, even with drugs. But I'd rather have pain then dyspneoa, nausea, arryrhmia,or any of the million possible postoperative complications....what I mean is I am grateful that it's only pain. It will pass. I am still weak, tired, can't talk much, can't walk much... But I am optimistic that slowly all of that will get better. Thank you all for each and every message you wrote! Each word means a lot to me and lifts my spirit instantly! The connection between us heart warriors which we have through this experience is special and unbreakable.

Hello everyone, just an update, 7th postoperative day, tomorrow they are releasing me home. Still have some lab parameters that need to be adjusted but otherwise I am fine. On the 4th day I overdid myself as I felt really good, I was walking on the ward a lot, talking to my family on the phone whilst walking around the room at the same time, it was very exciting day, my hero anesteziologist came to see me and after him my surgeon also, I didn't nap that day, in the afternoon I had heart ultrasound which was interpreted worsely than it really is, so it was emotional rollercoaster and physical strain all day long. After that day, my overall power went to "please charge... shutting down in 30 sec". The next day I felt like 2nd postoperative day, so weak and empty. Since then, I have learned to take it easy, I am basically lying most of the time, watching British comedy on YouTube, I only take one or two slow walks on the ward, I took a shower by myself, my sister washed my hair... Plan today is to try to walk on the steps with physiotherapy. I am optimistic aboout that. My iron level is slowly improving, as is my Hb. The trip home will be long so I am saving my energy. We will section the trip and sleep in Austria. Pain is still there, night sleep is totally fragmented, it is hard to find a position, and when I do - I sleep no more than 3 hours. All of that is normal and I am accepting it, my recovery is my own. Informations on this site were immensely helpful as I wasn't surprised by any of this. Peace comes from knowledge :) Wishing all of you facing surgery a lot of strength! You will do it and everything will be fine!

Hi lovely people, just a few hospital stuff related things: our experienced warriors on this site mentioned long phone charger wire, I didn't get that one serious enough to acctually go to store and buy one! :) Life would be so much easier... Game changers for me were woollen very thick socks, acctually even two pairs at the same time! Because my feet were apsolutley freezing the first two days (circulation was yet not adequately established). Lovely ladies here mentioned it once and I am so glad I brought those. And I have my own memory foam pillow with me, it's anatomically shaped, I use it at home and I am so happy it's here with me next to the hospital ones. Foamy earplugs are also useful, hand creme and lipbalm. Good luck to everyone going into this battle!

A little setback this morning as the fluid appears around my lungs, but it doesn't require dreinage, only diuretics, it should go away. This morning was emotional overwhelming as I felt difficulty breathing, I cried a little and they gave me oxygen and nurses comforted me and after that all was better. I am walking a bit around my room very slowly. Anemia is quite severe, but all is expected and will get better, they reassure me. Today is my birthday which is quite funny because I feel like a newborn learning to breathe, talk, walk...it is like my first birthday haha. Visual aura or fireworks are here, Marie, Richard I remembered you...but they go away fast. Everyone getting surgery I wish a lot of strength and patience, you can do it! 

I am alive. Repair was successful. Prof. Borger never saw a Barlow like mine, very complex. I feel awful but am happy at the same time. It's hard to breath and I have lot of pain, but can't tolerate opiats.