MONA's Journal

Hi everyone. I was wondering if 3 months post-op hot flashes are normal. I didn't experience any sweat during my stay in hospital, I started having night sweats in week 10 and sometimes even during the day. I start sweating suddenly, it's basically just my face, not the entire body and it's been almost a month now and they haven't gone away. Can anyone please help me? Thank you! May you be well and healthy and happy!

Day 70. As I was writing in my VALVE STORY, we were on holiday in Teneriffe when I started feeling very poorly and we rushed to A&E in Santa Cruz, the capital of Teneriffe. They said I had suffered an episode of decompensated heart failure ( insuficiencia cardíaca descompensada in Spanish ) , but they seemed pretty relaxed about it. I remember it clearly how I was paralyzed with fear to hear that, but they were quite chill about it, saying this is common and somehow expected for congenital patients. I had liquid in my lungs, so they kept me in hospital on diuretics until I could walk a bit and on the 30th December they discharged me. They said I should keep on taking diuretics for a month and that I should see my cardiologist in Romania in about a month. Why, how did this happen? No idea. It could have been an imbalanced lifestyle, they said. Which, I thought, was true. I had been sitting and working from home for about 2 months, with very little exercise, then flew for 6h at high altitude with no oxygen supply - although a congenital cardiac with an average saturation of 82, no doctor ever told me I needed oxygen supply on long hauls!! - plus wearing a mask on the plane, then walking for 4-5 miles on arrival in Spain, yes, it made sense that something had to give. After being discharged we went back to Costa Adeje, but I wasn't feeling any better and I started coughing and not being able to sleep or lie down again. I didn't want to go back to the hospital, but late at night, I think it was the 3rd or 4th of January my husband Adrian who is in general relaxed and not keen on doctors and hospitals said I should consider going back, as he thought my condition was getting worse. We drove back and I am glad we did. The doctors suspected I had developed endocarditis and put me on heavy antibiotics. I was a mess, it was hard and painful and because of Coronavirus my husband couldn't be with me. So basically I was in hell, all on my own, crying 24/7, not knowing, not understanding much, asking the Universe why this had happened to me. On the 9th January they told me I would probably need surgery but the hospital in Santa Cruz didn't provide heart surgeries and I had to be taken to Gran Canaria, where we currently still are. They flew me in a helicopter on a rainy evening, late, I could see the stars and hear the rain and I only knew they were getting me there to save me. That's how I ended up in Dr. Negrin Hospital, with one of the best teams of cardiologists in Spain, Dr. Rios and Dr. Portela who accepted my transfer. At that time I didn't know any of this, I was very scared and alone. I remember I got to Dr. Negrin very late , it probably was 11pm or midnight and Dr. Rios did a echocardiogram , confirmed endocarditis and I texted my husband: 'I'm on good hands' and I think I fell asleep. My husband checked out and got on a plane first thing the next morning and flew to Gran Canaria where he got himself a room literally 4 minutes away from the hospital. At first he could visit me because there were very few cases of Covid on the island, but then some patients got sick on the cardiac ward and he wasn't allowed to visit anymore, so I was all alone. I was grateful for the technology, the only way to keep in touch with him and friends. Then something very weird happened, I had 2 episodes when I peed myself really badly, like going to the toilet 7-8 times in a row, without being able to help it, and then I felt my hand and legs as if they were paralyzed. The first time this happened I cried for help, but the nurse who was around didn't take much notice, as my body soon went back to normal. The second time there was this nurse Miriam who called a doctor, they did an EKG and it probably wasn't very good, as they decided to do surgery the very next day. When I got to Gran Canaria Dr. Rios had told me my aortic valve needed replacement, but he said that first I needed antibiotics for 6-8 weeks, as getting rid of endocarditis was a priority and only after the endocarditis was gone could they perform the surgery. That was the original plan. It sounded awful, as I had to stay in hospital for quite a while, but I didn't have a choice. However, this episode in which I had this paralysis-like symptoms urged them to schedule an emergency procedure. I don't know what that was. They said that I lacked calcium from my body, and that's what I peed myself and felt the numbness in my arms and legs. I really don't know. Anyways, I'm tired now, I'm not having a very good day, I wanted to walk earlier but I couldn't, my energy is very low, so I'm going to stop writing now. I love this website, THANK YOU ADAM for educating me. I really understand my heart and my surgery now, after going through this site, the learning resources, people's stories. I have been extremely depressed, because there was very little information pre and post-surgery, so I'm trying to understand many things on my own now and this website makes a tremendous difference. I am profoundly grateful for everything people share here, everything I read helps me be more optimistic. Because my question for many , many, TOO MANY weeks, even after being discharged from hospital has been ' will I survive this?' Your stories are positive, optimistic and comforting. THANK YOU!!

My husband, Adrian, my rock through all this...

DAY 70

Hello everyone. This is day 67 after my emergency aortic valve replacement. I was in hospital for 1 month, not I'm out and I'm still recovering. The recovery is very slow, with a lot of pain. My doctor tells me to walk a lot, so I do. At first I couldn't walk very fast, but then I could do a brisk walk quite decently on a slightly uneven, uphill park. But then, a couple of days ago when I had to walk uphill, I simply couldn't. My body wouldn't move, I felt a total lack of energy to take one more step further. My heart wasn't beating any faster, I didn't feel tired, I just couldn't move and I leaned on my husband. I didn't faint, but I simply had to sit down on the spot. This continued the next time I went out and it's pretty scary. Has anyone experienced anything like this? It's hard even to put it into words. It's like I feel drained, zero energy and can't even talk... He freaked out a bit as he was asking me what's wrong and I couldn't even talk. Plus, I started sweating a few days ago - especially at night, but not only, during daytime, too. I didn't sweat in hospital, after the surgery, so I'm wondering if I should be worried about all this happening now or if you guys have had similar experiences. Might it be that my surgery wasn't a planned one, I just got to ER with heart failure and they had to operate on a severely damaged heart, so everything is much more difficult and it take longer to recover? My doctor is very supportive, but I worry A LOT, especially that it's been so long and I still have lots of pain and recovery to do....

I was very glad to see that in Spanish hospitals they have everything clearly and simply explained for people with heart conditions. This poster informs patients on Heart failure symptoms: dry cough, difficulty breathing if lying down horizontally etc

25th December 2020, Tenerife

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Holiday in Amsterdam