Klara's Journal

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.

Dear heart warriors, my friends, thank you very much for your well wishes. Covid 19 has hit us hard, but we are finally recovering and feel almost 100%. I am so sorry I couldn't write here sooner, although my thoughts were with this community! My surgery was ofcourse postponed but as I said I wasn't able to write here and correct the date... New date is September the 26th! I am very happy new date is so soon, but I expected later date... Now I am regaining my strength, vitaminizing and resting, ready for the german adventure soon :)))) thank you all once again! I appreciate each and every one message...

I contracted Covid...me and kids are positive since this morning. Such a bummer. My little guy from the profile photo is so ill, it hit him the hardest... I hope in a few days it will all be behind us. I wrote e mail to hospital in which surgery was planned and I am waiting for their response, probably a new surgery date. I will have to cancel flight, all people involved have to change their plans... I feel awful, mentally and physically, but I tell myself "Come on, it's better to contract it now then after surgery" this thought keeps me above water. We are gonna survive this now and be strong and healthy for the new date! 💪😟

Dear people, I'm in a dilemma and maybe your kind anwsers will help me with my decision  - we live in small apartment, I have three lovely kids under five, very active and lively and attached to me and they love waking up at night for no reason haha. After I return from surgery I was thinking about renting apartmant next to us (happens to be empty and very kind neibourghs are happy to rent temporarly). Will it be possible for me to be in my room and rest while kids are in the next room jumping up and down... I don't know how will I feel, will I have a lot of pain...will kid's presence be a big problem... Is it crazy to rent apartment next door just to be alone and have peace, but also be close to them? I think I'll rent but just need a push from you expirienced guys that it's a smart decision since I really don't know the feeling after surgery... Thank you all very much

Hi everyone! I will travel from Zagreb to Leipzig (900km) for my surgery. I am thinking about my return travel, car or plane. How long before you can go on a plane ride after heart surgery? Or car ride (cca 9 hours) is better? Thank you very much!