susan 's Journal

Hi All, It's been 3 and 1/2 years since my mitral valve replacement and mostly I'm fine, at least my heart is. I'm wondering if any of you "old timers" have experienced continued tightness around the scar, muscle tightness in the upper body, and high levels of anxiety and fear. Since my cardiologist doesn't have much to say since tests show all is well I'm hoping that someone out there can relate. I wish great health to all of you and rapid recovery to those awaiting surgery.

Here I am two years later, with this surgery pretty much in the background of my life. I am writing again to ask if there is anyone who has dealt with the flu while having a prosthetic valve. I seem to have caught it from my husband and am concerned about secondary infections although I am in very good health otherwise. I was given a prescription for tamiflu but after reading about benefits vs. side effects I opted not to take it. I am taking lots of natural remedies: vit. c, vit. d, oregano, garlic and cannabis oil.......but reading about dangers of flu has gotten me scared. As for my heart, that has gone really well, especially in the last several months. My scar is barely visible and my echo shows all is normal. I wish good luck and good health to all of you in the new year and look forward to hearing from anyone who has experience with my latest issue.

First anniversary mitral valve replacement! On October 1st, 2015 I went into surgery hoping for minimally invasive repair of my mitral valve, defective from early childhood. When I woke up it was with a replaced valve (bovine) through the sternum. My surgeon (Dr. Argenziano, Columbia Presby. the best!) had told me that this was possible but in any case I would wake up with the situation taken care of. So here I am a year later, after an uneventful (thank goodness) recovery, healthy and active...no more skipped beats (a lifelong disruption). I was extraordinarily anxious beforehand, used ativan to get me through the pre op terrors, was quite anxious for the first few months believing I would never be the same. The good news is the anxiety passed as I improved from month to month. By January I was dancing again and soon thereafter traveling, dancing, hiking, galloping up the stairs. The only issue I feel still is a tightening sensation around the top of the incision but hey... a small price to pay for being healthier than before. My love goes out to all of you about to undergo this life saving, life changing event This site really helped me get through the rough times with all the support available from those with experience and it can do the same for you. I feel so fortunate to be where I am in my recovery and wish you the best too. We are so lucky to live in a time where such surgery is so common and perfected.

Having had mitral valve prolapse all of my life ...and with moderate to severe regurgitation since I've been getting echoes..I also suffered with anxiety and panic attacks. My resting pulse was often 90 with bouts of tachycardia and skipped beats. I am now almost 11 months post surgery (OMG I can't believe it!). Although I have wanted to get off metoprolol (25mg) my resting pulse has gradually gone down to 65-75 and interestingly I feel so much calmer. I have always thought my anxiety caused a rapid heart beat not that the rapid heart beat caused anxiety. In any case I'm feeling really well and so grateful for this surgery . For all waiting in the wings....we are so fortunate that our hearts are fixable in this day and age. I am also grateful to this site at which we can receive and give support to each other.

8 months after mitral valve replacement and I have a question about weaning off of metropolol. My heart rate has always been on the high side (90) and was even higher after surgery for awhile, even with metropolol. Now it has come down to 75ish at rest to the high 80s when up and about. I like the fact that it is slower, which makes me calmer however, I really don't like taking it or any drug and would love to wean off of it. Can anyone share his/her experience getting off of this drug. I've read a lot of discouraging accounts online. I am concerned about rapid pulses and arrythmias if I wean off. My bp is already on the low side. I would so appreciate some suggestions. Thanks!!!

It's been 8 months and really I can hardly believe that I've had open heart surgery. For all of you about to undergo this procedure I hope you find comfort in the fact that so many here are well and thriving and you will too. I just came back from a 6 week journey in Europe, dancing, climbing hills and steps, hiking, living life to the fullest. I thought several months ago that I would never be able to go on this trip...I thought I would never feel "normal" again. In fact, I feel a whole lot better than normal. I thought I had had no symptoms...but I realize now I had symptoms, which I lived with my whole life and considered to be part of the human condition. The first few months were challenging but things get increasingly better with time. I wish you all good health!!!!

It's been 8 months and really I can hardly believe that I've had open heart surgery. For all of you about to undergo this procedure I hope you find comfort in the fact that so many here are well and thriving and you will too. I just came back from a 6 week journey in Europe, dancing, climbing hills and steps, hiking, living life to the fullest. I thought several months ago that I would never be able to go on this trip...I thought I would never feel "normal" again. In fact, I feel a whole lot better than normal. I thought I had had no symptoms...but I realize now I had symptoms, which I lived with my whole life and considered to be part of the human condition. The first few months were challenging but things get increasingly better with time. I wish you all good health!!!!

7 months!!!! Mostly I have been absolutely great however, I am now on a 6 week trip to Europe...starting with a two week transatlantic cruise (teaching on it). Today for the second time in two weeks I woke up with my heart beating at 116. This happened once at home as well. It wouldn't slow down so I went to the ship's doctor who after an ekg and some bloodwork recommended upping the dose of metropolol. I called my own cardiologist and he said he agreed. I have been taking 25 mg extended release since my surgery and except for these few episodes it has been working. I am really nervous about increasing the dose especially while I am away from home and my own doctors. It has been my goal to eventually stop taking it and I'm really concerned that it will be so much harder to get off of it if I increase. On the other hand the rapid heartbeat was terrifying. It lasted for an hour and I'm afraid it will happen again. Any suggestions????

I just wanted to share how great I feel...especially in comparison to how I felt! Since my last post, which was a turning point in itself ,( to which I attribute the benefits of moving) life has become, may I say, "normal". My always rapid heart beat, which has been around 90 for many years and which rose higher after surgery, causing panic and anxiety...making it go even higher, is now somewhere between 70 and 88 (with metoprolol). When it races, I feel crazy...so I feel so much calmer. I still wake up feeling weird and nervous but it passes. My cardiologist told me I have no restrictions so I feel comfortable doing whatever. I'm about to go on a work/vacation on a two week cruise (my first ever) trans-atlantic to Barcelona followed by dance related events in Hungary and Albania! I'm more than a little nervous about being in the middle of the ocean and having a panic attack but hey I'll deal with it.
I want to let everyone who is at the beginning of this journey know that If I could get this far...so can you!!!! I was not the best patient. I freaked out at every symptom. I was depressed and panicky. In my frustration and discomfort, I was mean to my family. As my physical condition improves, so does my attitude.
If there is one thing I could have controlled or changed about this whole ordeal it would be having had more knowledge from the doctor about what kinds of post surgical symptoms are normal and which are signs of trouble. I worried about them all. It was hard to know whether to call the surgeon or the cardiologist or primary care physician. From what I've read on this website some of you seemed to have 24 hour access to on call physicians. What a great idea.
I am very grateful for this forum....it was where I learned what was normal and what wasn't. Thank you all, heart family, for being out there. Sharing with people who know what you're talking about is the best medicine ever. Love and good health to you all!!!!

In my last post I talked a lot about anxiety and depression. The way I feel now may well be the best way to demonstrate how much of a roller coaster ride this whole experience has been. In fact, I feel WONDERFUL (at least for the last few days). This past week end I had the opportunity to be at a dance festival at which I DANCED FOR THREE DAYS IN A ROW with no problem!! It was the best I have felt since the surgery and it showed me how important it is to MOVE, even when I don't feel like it. A nagging soreness, painful stiffness in the middle of my back which I have felt since the procedure, which I feel when breathing deeply, disappeared after all that dancing. It's not totally gone, but I know it is fading. I have had more energy and less sadness. I understand that there will be up and down days but I am thrilled to feel WELL for a while. It's important for me to share with you all that I actually feel healthy!!! I was seriously doubting that I ever would again. I am feeling deep gratitude. So to all my heart family.....if you haven't had this moment yet...you will!!!!

Dear Heart Family, I am seriously seeking support and comfort for profound anxiety...and am not sure what avenue to tread. I did suffer from anxiety/panic different times in my life before the surgery for a mitral valve replacement.Now it's a whole lot worse as there is actually something big that I've gone through which causes symptoms.Those of you who know what I'm talking about it is a stressful way to live, hypersensitive to all physical nuances, never knowing if what you feel is serious. Often just experiencing those sensations is enough to send me into a deeper state of fear..It is crippling. I usually take .5mg of Ativan once a day but worry that I will become dependent upon it. It does however, seem to return me to some normalcy. There are no support groups near my home and I've thought of starting one. My doctors usually encourage me to take the drugs. I work with a chiropractor, acupuncturist,and do yoga but getting out of bed is a giant challenge.I am afraid I will suffer panic away from my home. Have any of you dear people dealt with this and could advise me on how to get help. Thank you so much.

As I'm looking for a support group, I'm wondering if there are any of you on this list who live near NYC???? We could start one!!!!

Four month update: physically I think I'm doing really well. I'm working out on a treadmill, doing yoga, dancing. I have a few annoying symptoms...I'm still experiencing extremes of temperature, often either too hot or too cold. There is pulling around the incision, particularly at the top and my mid back and shoulders are often stiff and uncomfortable. I used to experience lots of arrhythmias and now just an occasional pvc (yay). If I do too much I feel an unequalled degree of exhaustion. I feel very fortunate that I have not thus far experienced any major problems and as I read what some have had to deal with I know that I am lucky.
Emotionally I'm not doing as well. I am often tearful and depressed and anxious. I am reluctant to do some of the things I want and need to do out of fear of something bad happening. I think a support group would be so helpful but haven't been able to find one near me. I am so thankful for this list and reading all the different ways that people deal with this experience. My healthier heart goes out to all of you, especially those about to have surgery. If you're not neurotic like me...it'll be a breeze...if you are...reach out and the support will come.

Four months.....

Going on four months and was feeling quite good. On Thursday however, for the first time, I put in a full day's work after an interrupted night of sleep and felt so tired after, that I needed two days to recover. I am kind of disappointed as I felt that I was returning to a semi "normal state. Now I'm filled with anxiety and am reluctant to do anything out of fear of exhausting myself again. I'm also still feeling pulling sensations around my incision and stiffness in my upper back. I know that movement is important but I've been coddling myself and actually doing less. Can any of you folks relate?

Three and 1/2 month check in: feeling so much better than before...I sometimes forget for long stretches of time that I had this major surgery. I am doing gentle yoga 4-5 times a week and joined a gym for the treadmill (cardio rehab was actually not working for me as they had trouble hearing my blood pressure and would follow me around the whole time. My bp always was very low there because the cuffs were too big for me and the readings inaccurate. I ended up having to go to the cardiologist to check it out and my bp was at least 15 points higher there!) My doctor said I should do exercise on my own, do the things that I love to do such as dance, that rehab was causing me stress and therefore not helpful. At the gym I monitor myself. I'm not recommending that anyone else avoid rehab...it just didn't work for me. I don't think my experience is common. My heart rate is still rather fast...I finally went below 90 for my resting pulse. I find that during exercise my muscles get really stiff, making it difficult to push myself. My neck, shoulders, and back get so tight. The incision is healing although more sensitive now than earlier. Nights and morning are the hardest...I have trouble sleeping and when I get up I'm very stiff but movement helps. I'm grateful that sometimes I feel "normal" and am hoping that the next few months will be even better. I send my love to all of you in our heart community..and wish you the very best outcomes no matter what stage you're in.

Three months and feeling mostly really well except for insomnia and occasional nightsweats. Does anyone still experience nightsweats this long after surgery? I have no other symptoms of infection.

Thursday marks 3 months!!!! I feel very lucky that most of my recovery has been smooth so far. Many symptoms that I thought I was stuck with for the rest of my life are quietly disappearing: hoarse voice, thick throat, insomnia (I actually slept through the night last night!!!!), middle of back pain, restless legs, depression/sense of hopelessness, anxiety, racing heart, pvcs, lack of energy. Not to say that they are all gone...but a part of everyday I forget that I had surgery and that is a good thing because then I don't hold myself back. I have had lots of help from acupuncture, homeopathy, chiropractic, yoga, and dancing and especially my husband who is always by my side ready to help if needed. I am still very conscious of tightness around the incision. It feels as if it wants to close itself ever more firmly whereas I feel that I must open out my chest. Exercise, movement is good but I always feel sore for several days after. I hope that gets better. For all of you who have come after me keep the faith. It does get better, slowly, slowly. And I trust from reading about those that have gone before me, that it will get much better, slowly, slowly. And for those that are awaiting the big day....you surely can see that this is a great thing that you are about to do...just knowing how many people have successfully done it already. Love to all of you out there. Thanks so much for sharing your experiences and wisdom. It carries me through.

I had an important lesson today, in the middle of my 7th week post op. I have been very down and interested in doing absolutely nothing as I get very stiff in my upper body and find it hard to tolerate. So I tend to resist pushing myself other than walking, which my legs enjoy. I was scheduled to attend a professional training early this morning and when I awoke I thought to myself...no way. Getting up in the morning is so difficult. I am sore and stiff and aware of my incision. But I decided to get up and dressed and act AS IF I were going to go. By the time I was ready I actually felt like going. The stiffness was lessened by movement, a major discovery. Whenever I feel that very yukky sensation of my chest being in a steel cage I stick out my chest, rotate my shoulders and there is much improvement. I attended the training and when I returned home actually felt energized! My lesson for today is to be patient and push myself just a little bit more than I think I should. The accomplishment of attending a work related event also helped my self esteem greatly. Regards to all my heart family and wish you all a wonderful Thanksgiving. This one has very special meaning!!!!

7 weeks post op. In general I feel physically much stronger. I can walk as far as I feel like it, at least on flat surfaces. Stairs are fine. My sternotomy incision looks quite artistic and is healing however, it is more irritating now than before. Sometimes it itches and sometimes it feels tight and has a pulling sensation. Do others feel this too? My lower body is a champ...I can do most anything, but I somehow don't feel integrated with my upper body. Bending down still doesn't feel good and I have lots of muscle discomfort...in certain spots when I move. Even though it's discomfort, not pain, it gets me down to the point that I don't feel like pushing myself. I will start cardio rehab on Dec. 1 and am hoping that will kick start me to the next level of recovery. I keep expecting to feel more
"like myself" and I just don't. I'm still very emotional and worry that I'm not making more physical progress. Does this "ring a bell" for anyone? Looking for some support here, heart friends!!!!

Five weeks and up and about for a walk with my son.

five weeks post op and I have a question....During the day I feel fine but everyday around 4 o'clock I feel really tired and achy. My temperature is usually 97 + but at 4 it goes up to 98+ , still normal, but I feel as if I have a low grade fever. I just had blood work so no infection. Does anyone else share this?

Four 1/2 weeks and yesterday was given the go ahead to drive, to dance, to do whatever I am able to do (being mindful that the chest is not fully healed). Just seeing my wonderful surgeon (Dr. Argenziano) who is the warmest, most communicative, and compassionate human being I have ever encountered gave the healing process a huge boost. Learning that many of the discomforts are still considered normal and will take some time to go away strengthened my resolve to move myself out of some sadness and gloom. I have a prescription for cardio rehab which I'm excited about and can resume some aspects of my yoga practice (no downward facing dog!!!!) I also learned that my mitral valve was so badly calcified that it had to be replaced, the assumption being that I must have had rheumatic fever as a child. I was very very lucky that nothing happened before I did the surgery. So today is a new day....for the first time in many months I feel happy to get out of bed and face life with a smile. I am aware that there are many ups and downs to deal with before I am fully recovered but having been so afraid, so uncomfortable, so depressed for these past six months...learning that I needed a surgery for which I had no symptoms and making the decision to go forward as quickly as possible, I now feel relief and joy and total gratitude that I am alive.

As I've just passed the third week mark I can testify that what you've all said about not looking at day to day but rather week to week makes much more sense. In the moment I often feel depressed, as if I'm not making any progress...here comes another day of shuffling around the house and breathing into the spirometer! However, some really pleasant and surprising things are happening in spite of me...yesterday I went to breakfast with my husband and then walked part way around a local lake, taking in the foliage. Last night I slept eight hours without any pain medication, not even an advil. I cried perhaps 75% less. Every day around 4 o'clock I feel very low, achy, and irritable but it usually passes (anyone else have this experience?) I'm walking easily up and down a very steep staircase in my home and have been doing some really helpful exercises given me by a p/t with ease. My cardiologist told me yesterday that I'm fine heartwise and just need to allow my body to heal...he said you'll just have to get through it, it will get easier and easier, week by week. So for those of you about to have surgery, you can see this is not so terrible....just about having patience and allowing the body to heal. A positive attitude and loving support go far in making this happen. The pain has not been bad at all, it's more about discomfort and not immediately being able to do whatever I want. So this week is a whole lot better than last week and I'm really looking forward to NEXT week!!! I wish everybody health and happiness and for those about to have surgery, I wish you peace of mind as you wait and know that you will be just fine, really soon!!!

11 days post op and some good things and some "challenging". First, the good news: my appetite is BACK! Eating feels good again. Instead of pushing every morsel of food away I'm requesting meals all day long and have managed to keep my weight the same for three whole days.
I found a way to get myself to walk...just put on some of my favorite music and pretend that I'm dancing. It elevates that feeling of just walking in circles to a "higher" form. My husband is taking such good care of me and he's been cleaning the house to a ridiculously high standard.
And the challenges? I am so stiff in the chest and back area that I can barely move. ouch. Breathing through that gadget gets harder as I get stiffer. The other night I got a tickle in my throat. Imagine how that felt. Any suggestions? One of the chest draining sites is oozing a little as it is right in the fold of my belly. It coagulates and then gets dislodged. I cry quite a bit for "no" reason. That's about it for now. My thoughts are with those who are about to have surgery and will soon join in the healing fest and with those who have just arrived, like me, into this unknown zone and need lots of encouragement. Love to all!!!!

Today is day 7 post op and I have been home now for 2 days. The surgery was more complicated than anticipated as the surgeon first repaired my mitral valve and wasn't happy with it, and then replaced it with a bovine valve. He had also hoped to use the minimally invasive technique but as I am so small couldn't gain access. With all that being said, I seem to be doing just fine....sore, a little surprised that I don't want to do more, and incredulous that I just underwent this big "thing" and it's OVER!!!! Of course, it's clear that the hard work is just beginning but I am so happy I didn't postpone the surgery, or get yet another opinion. The anticipation and fear that came with it was by far the most difficult aspect to bear. I think I walked through the surgery in my mind daily for at least 4 months. If you haven't done your surgery yet...that's my first suggestion...push it out of your mind.Get busy. Meditate.
Thank you to all those who put in their prayers for me as I am now going to do for those about to have surgery. I am so grateful to be this far along and look towards those who have made so much progress as my inspiration. Love to all.

Yesterday was so so difficult, projecting all the terrible things I'm imagining (I almost cancelled the surgery) I have to go through, that I finally took some steps in a good direction. I posted my situation on FB, asking for support and got immediate helpful encouraging responses from so many friends that I actually managed to smile through the rest of the day. I've decided that I have more than enough information and am going to attempt to stop reading anything that might be scary, to face the rest of this with the open, trusting mind of a child. I bought myself an ipad to fill with music that I love, that will help transport me away from my fear and dark places. Everything is in place. I really like and have confidence in my surgeon. It's in a great hospital (NY Presbyterian-Columbia U.) Now I have to have faith that all will be well and distract myself. I'm no drinker but does a little wine help in your experience???? (now that's my healthy brain talking....trying to drown out the terror that lurks beneath..sigh)

Now that I made a decision to go ahead with surgery on 10/1 I am in a state of terror. I feel angry at my family for comforting me and telling me all the great reasons for the surgery, which of course I'm aware of. At this point there really isn't a choice and as someone who has never really been ill I feel so helpless. I am isolating myself from everyone, basically to protect my loved ones from my wild emotions. I have an appointment with a hypno therapist next week to help me calm myself down but I'm barely functioning. I teach dance with my husband, practice yoga, teach early childhood teachers at a university, and am (was) extremely active...but now I'm basically immobile, paralyzed by fear. Please help!!!!

I am scheduled to have cardiac catheterization the day before my surgery and am more frightened about that procedure than the actual surgery! I am prone to anxiety and panic and am ready to run for the hills. Can someone reassure me about this procedure?!?