Rita's Heart Valve Journal

Since my scar photos all look the same now, here's me instead in my favorite café with a $1 flea market find.

What to say on my 4th anniversary (that hasn’t been said at my 1st, 2nd and 3rd anniversaries)?
I had OHS at age 53, on April 10th, 2015, because of RACD (Radiation Associated Cardiac Disease), which means that several of my heart valves were calcified/messed up by the radiation treatment I had at age 15 when I was treated for cancer (Hodgkin’s disease) with chemotherapy and radiation. This type of radiation induces calcification, which shows up years after radiation, and is different from other types of Aortic or Mitral Stenosis.
Here’s some of the dry stuff you can read about RACD in medical papers on the internet (all true):
“Cardiac surgery in Radiation Associated Cardiac Disease (RACD) is often complex and therefore best undertaken by experienced surgeons at an experienced center. As radiation exposure is heterogeneous, patients cannot be uniformly managed and require individualized surgical approaches. In our experience, a "complete" one-time operation should be considered. This is especially important in multi-valve disease, where one valve may have severe dysfunction and another mild or moderate. Even in experienced centers, the outcomes of RACD patients undergoing cardiac surgery are significantly worse than a comparable matched population. Furthermore, re-operative surgery in RACD portends increased operative risk and morbidity compared with non-RACD surgery, so every attempt should be made to address all issues with a one-time complete operation. Managing patient expectations is critical, as post-operative complications can significantly impact recovery and quality of life….”

Before surgery I was followed for 6 years by a cardiologist, and when I developed “symptoms” (out of breath, tiredness) he made my appt with a surgeon who heads the vascular surgery department at the HEGP (Hôpital Européen Georges Pompidou), a surgeon experienced with RACD surgery. I never researched which surgeon to use or which hospital to go to. To be honest, I didn’t want to think about it too much. I wanted to trust. And luckily, as an American living in France, I had no dealings with an insurance company. I don’t know how much any of it cost.

I remember the day, a few months before my surgery, when I called the surgeon’s assistant to book my surgery. She let me pick ANY day I wanted, as if his agenda were completely wide open. I picked a random Friday. And felt strange all day. Maybe I should call back and cancel?

My aortic and mitral valves were replaced with Italian mechanical valves, plus, as a bonus, I got a repair of my tricuspid valve (never mentioned before surgery). A few weeks later, I was still in hospital with a heart that could not properly regain, due to surgery, its rhythm/electrical connections and so I had a permanent pacemaker installed, a side effect of OHS, that apparently occurs in 3% of patients.

I spent 5 days in ICU, 4 weeks in hospital, 3 weeks in a live-in rehab hospital and then 2 more weeks back in hospital when I needed a 4th pleural effusion drained (I had 3 in the first month) and also because it took a while for my INR to get where it needed to be.

My surgeon had not promised that OHS would be easy or that I’d feel better than before, or that my recovery would last a specific amount of time that could be predicted.
After finally getting home and back to work in July I remember spending the first summer after my April OHS exhausted and cold all the time, not feeling like doing anything much. In September I went into 7 months of depression. I had to learn how to trust my body again.
I have written posts about much of this.

Being on this site allowed me to write for anonymous readers, and to read others’ stories. I admit that OHS experiences with Instagram perfect recoveries made me feel like a misfit. Pre-surgery was not harder than post-surgery for me. The last thing I could imagine doing during my first weeks in hospital was posting a “smiling selfie”. That was so far from my reality. There were no cell phones in ICU, and once I got to the stepdown hospital room I could barely open my eyelids because I was so exhausted. Even watching TV was out of the question.

But weeks/months after OHS I found kindred spirits on this site who validated that what I was going through was “normal”.
Some wrote so beautifully, that reading them made me feel I knew them. I wanted to hug them and say, “I know”.

Today, 4 years later, I log onto the heart valve site less often. For several years after OHS I felt a need to post regularly in order to support those who were dealing with side effects (not all of which are mentioned by surgeons pre-surgery) and recovery, with questions about what is normal, and why don’t I feel better right away, and what is a new normal anyway, and why do I think about my heart all the time, and why does it pound so hard, and why is INR stabilization taking so long…
I hear you. Every recovery story is valid and normal. It’s yours. Heavy things happen, and we get through them. It’s hard, and there are down days. And there are good days. And they go back and forth. And we second guess our choices. My heart still pounds hard and my INR goes up and down, and I get migraines and vascular headaches, my pacemaker bulge bugs me when I see it in the mirror…. But, these things are no longer central.
I’m okay.
I don’t feel like running a marathon, but then I guess I never did.
Many of the physical changes I feel are probably just old age and not heart related anymore.
I dance flamenco and I fly to other continents and I walk, and I climb stairs and I take the subway and climb more stairs. I go to work. I carry groceries for blocks. I watch Netflix. I read. I eat what I want to. I take my meds. I don’t freak about INR levels anymore.

OHS was a transforming life experience, like cancer, like birthing a child, like losing a loved one. It encompassed hard moments and it took a long time to process and left me changed. It moved my life to a new, different normal. But that normal is now normal.

A big hug to my buddies in the class of 2015 and 2016! And to those from the years before and after. Thank you for being there. Thank you to Adam for making it possible for us to all know each other.

April 2015: Mitral v replaced with - Sorin Bicarbon Fitline, Aortic v replaced with - Sorin Bicarbon Fitline, Tricuspid v repaired with - Edwards Lifesciences Annuloplasty Ring, 17 days later: Boston Scientific double chamber pacemaker added

What to say on a 3rd anniversary ?
I’m sorry you all have to go through this. Some say it’s a piece of cake. Some say it’s challenging.
I’ll say it’s very hard.
Some don’t have pain. Some do. I didn’t. But it wasn’t about pain.
Some feel better. Some feel different.
Some are exhausted.
Some have physical reminders everyday years later.
Everyone’s experience is singular, and there is no normal.
You don’t have to be positive if that’s not how you feel today.
Being a realist is okay.
There will be good days and bad days. Sometimes a bad day/week/month is what you need to express. And sometimes you can let it go.
It’s all okay.

If I am still looking at the heartvalve site 3 years later, it’s because there are narratives that touch me, that make me cry, that make me laugh.
I came onto this site in 2015 looking for stories that would give sense to something that didn’t really make sense. Something to make me feel less alone, especially during recovery. Post surgery was when real narrative began for me. It was when writing became essential.

Your story does not have to be for everyone, you don’t have to gloss over the hard parts.
There may be someone who needs to read the hard parts.
The hard parts are harder when you hide them.
I, personally, needed to read the hard parts.
And so I thank you for sharing them.

1. I am jealous of men because they can, and do, take bare chested full scar photos, sometimes immediately following surgery.
2. I have my surgical report, but I don’t really understand most of it.
3. I can’t tell you offhand the brand of mechanical valves I have (although it’s written somewhere).
4. I can’t explain what an ejection fracture is.
5. I didn’t have any ice chips in ICU.
6. I was too tired to watch TV for the first week following surgery.
(But today, documentaries about baby animals as well as bad game shows give me flashbacks to the time I spent in hospital, after that first week, watching non-cable TV.)
7. I took my first shower 17 days after OHS with the help of a male nurse.
8. I can honestly say I did not have pain from my sternum cut.
However, I do not have adequate words to describe the exhaustion and discomfort I felt for weeks after surgery.
9. Before OHS, I had no idea that needing a pacemaker was a possible (3%) side effect of surgery.
10. I confess to not preparing anything in my house or in my fridge before OHS.
11. The most important thing I brought to hospital was a hair elastic.
12. The best thing I received in hospital was a thermos of vegetable soup brought by a neighbor.

Old Xray from 2015. A few foreign objects...and fluid in my pleural cavity... Fluid is now gone, objects remain. xo

Living with coumadin, and being okay.

I have 2 mechanical valves and have taken coumadin for 2 years.

Like most, I freaked about having to take anticoagulants, and worried a lot during the first few months when I didn’t understand why my INR levels went up and down and if I would ever be stable.

But today, taking coumadin is just another thing I do.
I’m not a pill person and coumadin is the only heart medication I take. I stopped the others (betablockers, etc.) as soon as I could.

I haven’t changed my diet in any way. I have always eaten everything in moderation. I still do. I still eat salads and green vegetables.
I no longer even think about what I eat.
I take my pills before dinner or during dinner or after dinner. Once I forgot to take them and freaked out….but nothing happened.
I do all the activities I did before, although ever since OHS I get tired much more quickly.
I haven’t noticed any more bruising than before.

I get my blood tested once a week or once a month or something in between. I probably test A LOT more than I have to, but with time I think I will test less. I test when I want to and have a standing prescription for blood tests. There is a lab near my house and a lab near my job. There are labs everywhere. A blood draw takes 5 minutes and I look up my results on the internet in the afternoon. Blood tests are free.
For the first 6 months after OHS, when I was still freaking about everything, I checked my results with my doctor (usually over the phone), but now I manage my own results and levels of coumadin. If I want to ask my doctor or the biologist at the lab, I do, but it’s rare.

The coumadin « side effects » I have noticed are :
-an itch on my scalp and shoulders for the first few months. No rash, just a light itch. This went away, after a few months, but occasionally comes back. My cardiologist said that it could be from the coumadin.
- I fart a lot more. Everyday. No odor, just lots of air. Especially in the mornings. This is definitely something that I can associate with taking coumadin because I never farted much before.
- I spot after I have sex, and only then, so I have to wear a panty shield for a few hours afterwards. I had early menopause years ago, so this light spotting is new and I liken it to my tissues being a bit more sensitive (like gums when you brush your teeth). My GP verified that this can be a side effect of coumadin.

Those are the side effects I’ve noticed that no one mentioned to me beforehand.
I have definitely had worse on other drugs !

Since being on coumadin, I had to have surgery (a cancer biopsy) and for that I needed to stop coumadin, go into hospital earlier and be on an IV of heparin. After surgery the heparin IV had to continue until my INR got to where it needed to be with oral coumadin. The hospital kept me in until that happened (in the same way that one stays in hospital after OHS until INR is stabilised).
This is a procedure that has to be followed with any surgery when one is on coumadin.

Because I have 2 mechanical valves I have a high level of target INR (3 to 4,5).
When my INR is a bit lower or a bit higher, I used to FREAK, but now I realise that INR will go up and down, but usually one can pretty much stay with the same dose of coumadin or with very small changes.
INR fluctuates. That’s just how it is.

What I would have liked to have known before coumadin :
-It’s okay to eat what you want to eat. Your dose of drug will accomodate to your usual diet. No need to freak.
-INR fluctuates and it can take some time for your particular body to get used to coumadin, and then you eventually will be more stable. This can take months rather than weeks. No need to freak.
-Despite scare stories, you’ll be okay. Of course you still have to freak initially, because that’s what we do.

In a perfect world I wouldn’t have 2 mechanical valves, I’d still have my thyroid, I wouldn’t have had childhood cancer and radiation, my lungs and heart wouldn’t be scarred, I wouldn’t have migraines or ever feel depressed, I wouldn’t have to take thyroid meds or coumadin.

I start by freaking…..and then I get on with life.

To get my mind off my heart, I'll also contribute a graduation photo - my son Alex at NYU Abu Dhabi

Saw my rhythmologist (guy who deals with pacemakers) today. He asked if I get out of breath (YES!) and then said he would adjust my pacemaker to help me get to 140 beats a minute (when working out) rather than the standard 130. The rhythmologist looks at a computer screen as he dialogues with my pacemaker (are we connected by wifi??).

I feel like a sci-fi character because of the pacemaker. Something my 2 mechanical valves don't make me feel....

A small break from medical issues - Cy Twombly at the Musée Pompidou yesterday...

Not quite 2 years after OHS (in January) I had a mammogram showing « microcalcifications » in my left breast which required simple surgery in March (and staying in hospital for way too long on a heparin IV to readjust my anticoagulants (due to 2 mechanical valves).
Yesterday I found out that radiation is standard procedure after microcalcification (DCIS ?) removal.
However I have a pacemaker on my left side (thank you OHS) which would have to be surgically removed and replanted into my right side. Not only that but radiation to the left side (heart side) has unknown effects on the heart (I certainly know that well, having had cancer radiation treatment as a teenager and consequently 3 damaged valves years later), so radiation is not recommended either. A « preventive » mastectomy is what they want to do.
My first reaction is to choose to live with « increased surveillance » despite the risk of recurrence of a (more invasive) cancer.
No one is mentioning this third option (except me).
I just can’t (don’t want to) have more surgery on my chest at the moment.

Just had to throw that out there, although it’s probably time to find the breast cancer facebook, and leave the heart valve facebook (as I call this site).

Today is my 2 year OHS anniversary (two valves replaced and a third valve repaired)
(One good valve out of four isn’t bad, is it ?)

I wouldn’t remember the exact day of my OHS in April 2015 if it wasn’t written on my agenda.
And I already wrote my 2 year post in March, a month early.

Today I am thinking about patients like me who have choices – Which doctor ? Which hospital ? What kind of valve ? What size scar ? What to bring along to hospital ?

And I am thinking about those who don’t have health insurance, or jobs, or finances, and who don’t have choices. For whom having surgery is not a possibility.

I’m American and live in a country (France) with its own problems, but we do have a universal health care system for everyone. We carry each other.
This is extremely comforting when something big (OHS) happens, and it has made my ride smoother.
So I’m okay with paying taxes. And with being in a public hospital. And with bringing my own towel along to hospital.

Which doesn’t mean I don’t complain, I do, but today I’m feeling grateful.

Anyone out there have mutliple mechanical valves (or at least a mechanical mitral valve) and then gone through another surgery (not heart related) where they were back on intravenous heparin and then had to slowly reintroduce anticoagulants while still on IV? How long did it take? I'm getting bored from many days in hospital.... and was curious as to how common this kind of reintroduction is. Is it more specific to French procedures? Is it only used with multiple valves? How does one work anticoagulant bridging in America?

Livemusicnow.fr at the HEGP hospital today...

View looking out from the Hôpital Européen Georges Pompidou - hanging out in front with the other I.V. users...

I keep thinking about Tafang Kuo's words in her post of a few days ago, and how she captures that one year after OHS feeling so well:

"Still feel unreal that it has been a year. Never spent this much time to be there for my body. Was so used to the idea that the body should be there for me.

Physically it feels like it has recovered 80%.
A year ago, an imagination of being a super woman after 3 month of surgery was the expectation.
Looking back, there is a sense of bowing down to this one year process of recovery.
And secretly feel impatience and exciting of wanting to hurry and catch up with life before the next corner comes up."

Thank you Tafang.

In April 2017 two years will have passed since I had OHS.
A wise friend on this site once wrote : « Recovery happens with or without you. »
Time flies, and it also drags.
There were long days, and short, sleepless, uncomfortable nights when morning began at 3AM.
Pre-op anxiety was not serenely replaced with post-op gratitude. Sorry. Couldn’t do that.
Post-op brought its own anxieties and challenges and many more difficult days.

I didn’t wake up in ICU after OHS with the wish to post a selfie, raise a thumb or text a friend. I wanted to go back under.
Another wise heart valve pal said : « Having valve replacement surgery is like getting hit by a cruise missile. » That friend from 2015 no longer posts and I hope he’s okay. I needed and still need his dark humor.
When I was ready to write, this site was a place where I could put words down in order to get them out of my head. Maybe someone would respond, maybe no one would, but I could write.
It was for me.

In the heart valve world, as elsewhere, I often felt like an alien, experiencing differently. But if I wrote what I felt, perhaps it would touch one other person who felt similarly, or was wondering what was « normal »…
As I read posts, some spoke intensely to me and I would think « yes , that’s how it was, that’s how it is. I’m not completely alone. »
Some writers I wanted to take into my arms and say « I know, I’m sorry, it’s unfair, it’s awful. »

Pre-surgery anxiety is universal, but it lasts a finite time.
Post-surgery anxiety can be more indefinite.
Many friends and colleagues consider that once surgery is over and a success, you are fine.
Who can you talk to about post-surgical problems when your heart surgery itself was a « success » ?
There can be a pressure to present as « okay » as quickly as you can. For others, for yourself.
As you linger in recovery mode, others get uncomfortable. You have second thoughts.

I wasn’t really prepared for : a pacemaker, pleural effusions, months of stabilising INR, emergency return to hospital 8 weeks later, vascular headaches, depression, complete exhaustion that lingered, continuing breathlessness, how fast and loud my heart would beat, how scary my first long airplane ride and vacation would feel, that I would feel my sternum forever.

This site was a place where I could mention post-surgery and hope that no one would object to my continued talking about OHS.

I felt humbled by :
-those who had bypasses
-those who had multiple surgeries
-those who worried about finances and insurance claims in a country without universal health coverage…
-those struggling with multiple health concerns other than OHS.
-those more wise and patient and positive than me.

But I also couldn’t help but feel jealous of :
-those who had repairs rather than replacements
-those who had surgery on only one valve
-those who didn’t get unexpected pacemakers
-those who got free heart pillows
-those who left hospital after 3 days.

The humor on this site was much needed.
Thank you to those who can laugh in the face of absurdity.

Certain « female » posts : having your period in the ICU, do I need a surgical bra, what if I have dirty hair… and the wish for the invention of a padded t-shirt that would muffle loud mechanical valve sounds (thank you Kate !) were all necessary and vital for me, if only because they were real.

Cruise missile analogies were and are always necessary to me.

Everyone is singular, everyone is unique, everyone grieves and recovers in their own way.
Nothing is normal. Everything is normal.
Your heart breaks down in many ways and for many reasons and many of them have nothing to do with you or anything you did. Lousy things happen to wonderful people.
Procedures that save your life cause future problems.
Grieving the former you is necessary. Then you move on. Sort of. Slowly. Maybe not today. But next week.

After OHS you may feel better quickly, or slowly.
Side effects come and go.
You may never be the person you once were, but instead a new version that will take time to get used to.
This new version might run marathons, or dance flamenco, or ride roller coasters.
Maybe you never even wanted to do these things and maybe never will.
Maybe you’ll go back to an even better than the former you.
Maybe the new you will look at life differently. Not better, not worse, just different.

It’s okay, despite American ideals of being always positive, to be in the moment, and the present moment might be hard, it might be awful.
You take the next steps and suddenly two years have gone by and there are other things that are central, aside from your heart valves. You dare to feel safe.
You don’t constantly google your specific situation to find out what awaits you statistically in the future. You don’t second guess your choices and wonder how it might have been.
Maybe you let a week go by without looking at the heart valve site.

OHS is over.
I don’t feel better, only different.
I am aware that anything could happen, at any time, with my new valves, but the fast loud pounding of my bionic heart is my new reality, and one I have accepted.
I am aware that other post aggressive-radiation-for-cancer-in-adolescence after effects are waiting to happen to me.
I try to avoid googling.
(post-script : moving onward, I have a surgical biopsy for a possible new cancer scheduled for Monday….)

I feel my sternum, a bone I never thought about before 2015. My sternum carries a « body memory » of being cut and stretched apart. This body memory remains, like an old knee injury that flares up at certain times. Not painful, only present. Always present.

My body carries physical memories - a pacemaker bulge and one more scar. Other physical markers are hidden inside and only show up in x-rays or scans or surgical reports.

Emotional scars aren’t outwardly visible.

Recovery happened both with and without me.


(special thanks to Alina, and many others, who set the example for how healing writing can be)

22 months after triple valve surgery, plus pacemaker (see bulge). Spleenectomy scar from 1977 also visible as a continutation of OHS scar...

Yesterday I was at the Hôpital Européenne Georges Pompidou (HEGP), Paris.
Everytime I’m there (for an appointment) I feel so much emotion : not positive, not negative, just emotion.

I spent 4 weeks at the HEGP in April 2015 after having OHS : 28 nights and 84 meals…. !

There is a café in the lobby that is filled with doctors, interns and patients, some of them in hospital gowns, pushing their IV holders.
The IV bags are filled with liquids of varying colors and I once asked a nurse to tell me what each color liquid was for (I personally only ever had clear liquid in my IV bag). I remember that she said « Yellow is for the liver,….).

There is something wonderful about the mix of people, both healthy, sick and recovering all jumbled together in this café, in a public hospital. I feel better just being amongst them.

Bummed out because 22 months after OHS, I had a "bad" mammogram a few weeks ago. I already had a tumor removed in 2004 and don't feel like being cut in the chest anymore! Plus the surgeon described me as "complicated" because of my pacemaker, radiation past, OHS, yada, yada, yada...
Sorry, just wanted to vent.

I feel very aware that every emotion, good or bad, makes my resting heart race. I can hear/feel it thumping away.
I sometimes wonder if OHS (April 2015), by giving me the ability to hear more clearly, increased my awareness of the thumping that was always there.
Perhaps my heart always reacted that way, but I didn't focus on it.
Now I'm trying to adjust to this new norm.

Last week I took my first flamenco dance class in over 2 years (16 months after OHS).

I naively thought I would be able to do this last September (4 months after OHS).
But, hey, it's okay.

My heart pillow. From a secondhand store. Never been to Cleveland.

Many articles about OHS mention post surgery depression.

Since I've had depression in the past, I felt very aware of this possibility.

In the months before OHS, I was anxious a lot of the time, and felt generally "down". Frightened not of surgery, but of my ability to be strong enough physically and mentally afterwards. I felt this way, because I've had surgery before, and I know that surgery itself goes quickly and usually safely, but afterwards there can be a lot to deal with.
I didn't have the easiest time after my previous surgeries, but I also felt mentally strong most of the time.

Five months after my OHS, I had a coffee with two friends who both had fathers who had recently had valve replacements, one in his late 80's, one in his early 90's. I remember feeling a lot of emotion, a lot of empathy for older patients, wondering how/why they could go through the intensity of this surgery, and at the same time feeling jealous of them because they probably didn't have to deal with worries of what would happen 20 or 30 years down the line, and that tissue valves were an easy choice for them...

That night I went into a depression that lasted about seven months.

Depression for me means having no motivation, doing the least amount possible, finding no joy in simple things.
When I'm depressed I do the minimum, I go to work, but I don't do much else. I stay at home when I can, I go to bed early, happy that the day is over. I don't wear makeup, I don't wear jewelry, I hardly change my clothes. Experiencing Christmas or a birthday is very hard. I don't want to celebrate anything. I don't want to see friends and social events are hard. Being around people is hard.
Shopping for groceries is hard.

At the same time, I am vocal about how I feel. I tell my husband, I tell my chidren, I tell close friends and family.
The helpful ones listen, and perhaps suggest an activity, but accept it if I can't/don't want to do anything. They don't push me.

Simple things that normally give me pleasure - like reading and writing, and walking around the city, didn't interest me anymore.

I told my cardiologist and he said: "Depression happens. I suggest you do something about it" but he didn't really have any recommendations (specific to OHS patients), especially when it occurs after rehab is over. When I pushed him, he gave me a recommendation of a hospital psychologist. She didn't have a lot of time for me (her main job being the psychological evaluation of candidates for transplants). Also, Paris had experienced a terrorist attack at this time and many of the victims were in this hospital, doctors and psychologists were busy with trauma victims. I felt unworthy.

I went to see another therapist on my own. She was helpful because she accompanied me. She couldn't change things, but she validated them. She validated what I had been through and that I was processing it slowly. That one is not immediately better, that it takes time. That feeling dark thoughts is okay. It’s a reality that can be accepted.

I was hard to live with. I was pessimistic and irritable. I didn't want to go out to eat. I didn't want to cook dinner. I didn't enjoy any vacations. There was nothing I wanted to do.
My husband allowed me to be that way. He listened when I needed to talk. But a therapist was vital.
There were days when getting out of bed was very hard. My emotions felt like physical pain.
In general, mornings were very hard, and night time, when I could go to sleep, was a relief from the day.

I stopped going on the heart valve website, because it gave me too many intense emotions and thoughts. I felt such empathy for other patients and the fact that they had to go through with OHS. All the anxiety they were feeling upset me.
At the same time, the endless heated discussions over valve choices also upset me.
I was irritable all the time.
Patients who said they were fine 2 weeks after OHS I couldn't relate to. Patients who posted the next day from the ICU unit were out of my comprehension.
I was jealous.
I wasn't able to accept everyone else's realities at that time.

I took a qi gong class, where I could do simple positive movements that opened up my chest, and slowly put me back in touch with my body.

I took a mindfulness class which was hard at first because I was so pessimistic about everything, even mindfulness theories. But I found it comforting to be in a space with 10 other people, all experiencing burnout or depression for different reasons than mine. There was a solidarity in that room even as I knew little about the other participants, I felt a oneness with them.

I had been talking to my cardiologist for awhile about stopping betablockers. I wanted to be on the least amount of medications possible. 7 months after OHS, my dose was halved and then 6 months later I stopped taking betablockers, with his accord.
Two days later, seven months after it began, my depression lifted. My resting pulse rate went up (in the 90s) but the cardiologist said I was "safe" since on anticoagulants, so it was my choice if I wanted to try another betablocker or not. I decided not to.

It could be a coincidence that stopping betablockers lifted my depression, although they are known to sometimes contribute to depression. They slow everything down (to give your heart a rest after OHS), and the lack of adrenalin can make some feel lethargic and unmotivated. I was told by another doctor that people who are naturally speedy and energetic and doing a lot of things at the same time (me) can be destabilised by betablockers because of how they slow you down. If one is slow by nature, there is less of an effect. If one is energetic by nature, one feels a change that doesn’t feel « right ».

In my experience, depression does lift eventually. It doesn't go away in a week or in a month, but it does go away. And hanging on to that knowledge can help one get through.

I feel lucky because when depression happened, I recognised it. I know what it looks like. And I know that there is often not the same support that a broken leg or a surgical intervention gets. People are afraid of depression and being around it and talking about it. It's a scary thing.

It's hard for family and friends and caretakers because there is no quick solution. Depressed people need lots of outlets. They need various people who will listen when things are hard. No one can listen all the time, so a village of listeners is needed. Help lines, therapists, groups.
Sometimes depression manifests itself in anger, in irritability.
Anti-depressants help many, and should be tried along with therapy.

One should try or do whatever feels right.
It's not good to stay silent no matter how hard speaking about it can be.

I'm not ashamed that I didn't bounce back immediately after OHS.

But now, 17 months after OHS, I had a nice summer. I experienced simple pleasures, simple joys. I felt like myself again.

I still get tired. My INR is okay, but it goes up and down. My valves click. I still like having a pillow on my chest. I still get scared about being on meds, so I breathe and go on. I still freak when I see my pacemaker bulge in the mirror. I can still get scared about the future.

But I’m okay.

1. Sleeping next to someone who snores (my husband) is much noisier than two mechanical valves.
2. I didn't wash my hair for 2 weeks after OHS.... and no one cared.
3. I'm on anticoagulants and haven't changed anything I eat or drink.
4. Having small breasts means I never saw a surgical bra.... and didn't wear any kind of bra after OHS for months.

The week I came home from cardiac rehab hospital I had big plans. I had made several lunch dates and planned various activities. I still had a few weeks before going back to work.
But when I got home, I didn't feel right and put off all my plans.
I went to the pharmacy to get the anti-anflammatory meds prescribed for my (4th) pleural effusion and the pharmacist told me I shouldn't be taking those meds with anticoagulants and should she call the doctor? I told her that the doctor had prescribed them knowing what he was doing. It was nice to have someone watching over me, as I was quite nervous as now I would have to see my GP (until my next cardiologist appt in a few months) and I wasn't sure the GP knew all about my case. And I'd have to go to a lab for blood tests, and figure out my anticogulant meds..
I saw the GP a few days later and she said I had fluid in my lung linings. She prescribed an x-ray and said she would call my cardiologist with the results. My x-ray showed lots of fluid - I had plans to see the GP again the next day.

That night I went to bed early, and my husband was sitting next to me looking at his i-pad. That's all I remember.
According to him, I began to say weird things. He asked our son to look at me and our son said I sounded like I was high. My husband thought I might be having a stroke so he called an emergency number and got a doctor on the line who asked him questions about my behavior. My husband put me on the line and said that I answered the doctor's questions making no sense at all (I have no memory of this). The doctor said he would send over paramedics. When I "woke up" (although to my son and husband I was "awake" the whole time), having been given oxygen, there were 4 firemen and 4 paramedics in our bedroom
I thought they were part of a dream or were actors playing paramedics.
I was taken back to hospital to the same cardiac ICU where I had spent those 5 intense days after OHS. I remember saying to my husband: Don't leave me here in ICU again.....
The place brought back bad memories.
But it was a different, nicer, experience this time. Quickly they realised that nothing had gone wrong with my heart or my valves.
I was in a room reserved for transplant patients, so it was a bit calmer and quieter. (I did feel bad because I had brought along a cat-hair covered blanket from home - I was always freezing cold months after OHS - and wondered if this grotty blanket should be in a sterile transplant room.)

I had had a reaction to not having enough oxygen, possibly due to another pleural effusion.
(I think a "medical misjudgement" had been made when I was given anti-inflammatory meds, and allowed to leave cardiac rehab hospital rather than have a pleural ponction again).

A day after, when my INR level went down, I a 4th pleural puncture was done to drain fluid from my lung linings.
And I was transferred to a regular room, where I stayed on IVs to get my INR stabilised and while they tried to figure out why my lung linings filled up with fluid so often....
No answer ever came on that question, but
after the draining, I had a more energy than during my last stay in hospital. I did a lot more reading and TV watching. I hung out at the hospital café. I went to the hospital library. When my IV came off, I went to the park next to the hospital and lay in the sun. I still napped a lot, but I felt "well".
This time I wanted to leave, but I also had that post-op fear of what could happen next. Being "okay" still felt tentative.

Before I had OHS, I thought I might be in hospital a week or 10 days. Doctors had mentioned cardiac rehab afterwards as either an outpatient or an inpatient. At that point I could not imagine myself as still being an inpatient more than a week after OHS....

After 4 weeks in hospital I was given the option of going to cardiac rehab hospital. At this point I did not yet feel "well" enough to go home so I said yes to inpatient rehab and I was transferred to another hospital not far away in Paris. I could have taken a taxi but they strapped me into a gurney in an ambulance and off I went.

At the cardiac rehab hospital there was a small cardiology department and a large room for physical therapy. I had my own room. Every morning my group of OHS patients would gather in the physical therapy room and do exercices led by a physical therapist. There were all kinds of patients there - many older men, a few young women (who wondered what they were doing in this crowd), a few middle-aged women like me. The exerices were easy, but many old men had difficulty.
Exercising made me tired, even though I thought I was in shape. Afterwards we would ride stationery bikes or walk treadmills for half an hour with therapists checking our heart rates. After that everyone was drained and went to their rooms to rest before lunch.
After lunch, there were optional lectures/group sessions to attend such as stress reduction, cardiac nutrition, how meds work, relaxation....
One time there was even a tango dancing session, where we all begged the instructors to just dance while we watched.
I would have added qi gong, or gentle yoga, or mindfulness...
Group therapy/story telling sessions would also have been nice.

At cardiac rehab hospital, aside from the morning workout sessions, one was free to do what one wanted: read, watch TV, walk outside, go to a café, sleep (a lot of that), listen to other patients' stories. But with a feeling of safety because doctors and nurses were there, blood tests were done, EKGs, Holters, ultrasounds. On weekends or holidays (a lot of those in May in France) one could go home for a night....or not. I remember that going home for the first time was really strange. I was SO TIRED in my apartment just thinking about all that I could/should be doing. But I just sat on the sofa. That night I was freezing (it was summertime) and I asked my husband to put a heavy winter coat over my side of the duvet. My husband had to give me shots of anticoagulant because my INR was low. I didn't mind going back to the cardiac rehab after that first tentative night at home.
By the end of 3 weeks I was ready to come home, but I was also feeling very tired (the way I had always felt when my lung linings filled with fluid). My latest ultrasound showed that I had fluid in my lung lining again, but the rehab cardiologist thought it would be reabsorbed by my body if I took anti-inflammatory meds for 6 days. I was scared because my INR results were still so tentative, and I knew that anti-inflamamatory meds react with anticoagulants.
Seven weeks after entering hospital for OHS, I went home.

My take on rehab is that it is not absolutely necessary, but it can be helpful - if for nothing else than for the camaraderie and safety it provides as you go back to "real" life.
There are all kinds of patients there, and it helps to see them all in the same boat, or a worse boat, or a better boat than you.

In order to have pacemaker-implantation surgery my INR had to be lowered temporarily.
I also had to take a shower (with antiseptic), something I hadn't done in 2 weeks, and something that I couldn't do alone yet because of weakness and because of all the devices I was still attached to that I had to be careful of.
A wonderful male nursing assistant showered me on a chair and washed my hair. That was lovely, although awkward. It's not easy being bathed by others.
My husband was on a business trip in Canada, one son was in Amsterdam, the other one in NY.
No one had planned for me still being in hospital and undergoing another surgery 2 weeks after OHS.

Pacemaker implantation takes about an hour or so under local anasthesia.
Surgery is done by a "rhythmologist" (cool word).
Ever since OHS I had been cold most of the time (amongst other things) and going into the cold operating theatre awake wasn't fun at all.
I was used to doctors/nurses making reassuring comments during surgery (when one is awake) but it was very quiet.
And I had a singular experience which I don't think is common for pacemaker surgery. But everyone has their story.
Almost immediately I felt as if I were going to pass out (which would be fine, as the nurses had me on all kinds of monitors and no one seemed concerned). With this feeling came an intense (unfounded but real to me) fear that if I passed out, I would die. I was hanging on for dear life thinking about what I still needed to do (in life). After awhile I realised I wasn't dying, but I saw myself severely handicapped and unable to do anything for myself, with my husband and son taking care of me. It was very scary. (I had NEVER had any thoughts like this, not before OHS, not in my life). After a terrible hour, the surgery was over and the rhythmologist said it was all fine. I burst into tears and said: "I know it all went badly - that I'm okay now, but there were lots of problems during the surgery - please tell me what went wrong!" He looked surprised and said: It went fine. After that I cried a lot, I cried when Dr Tanya visited, I cried when my friend who brought soup-in-a-thermos came, I cried on the phone with my husband.
I could tell that the hospital staff thought I was having an unusual reaction.
All I know is that general anasthesia (after OHS) stays in your system a long time and that another surgery, even simple, was too much for my psyche at that moment. Or perhaps when the pacemaker leads go into your heart, they affect one somehow.
After pacemaker surgery, my arm/shoulder was bandaged really tightly for 24-48 hours so that my body would not try to expel this metal battery under my skin. There is some pain - no big deal, but it's more painful than a sternum cut was for me. The pain lasts off and on for a week and it takes about 6 weeks or so until you have full use of your arm (i.e. can stick it up high in the air). You are told that you can't play raquetball.

Pacemakers vary in size but I was given a large one "that lasts longer" - 10-12 years, because I will (probably) need it replaced more often than a patient who got their first one at age 80. I understand that the replacement surgeries are easier because the leads stay in your heart, and only the battery in the shoulder needs changing.
As much as I don't mind scars, the pacemaker bulge bothers me (when I see it) but I am not aware of it (in the way I am aware of my sternum) when not looking in a mirror. When I touch it, I feel its every groove and see it's shape outlined. It feels more bionic to me than mechanical valves.
I see the rhythmologist once a year and he doesn't look at me, he looks at a computer and says things like: "On Dec 23rd I see that your heart beat quickly at 4AM". It's weird. I think my pacemaker kicks in once a day or so for a few minutes when my heart rate drops. Without it I would probably pass out at those times. Or that's how I understand it.

To see the bulge, you can look at my upper body photo on a former posting. That photo was hard to post, but I needed to do it.

Part 4 to come - Cardiac rehab hospital

Heart on church wall in Italy.... With a special shout out to Barb, Alina, Wanda, Kate and to so many others... as well as to those kindred spirits who were posting already in 2015 like Mary K, Jean, Terry, Popeye, Jeannette, Meredith, Duane and Dan D

What I remember most about the first weeks after surgery (after 5 days in ICU and now in a regular hospital room) was my extreme exhaustion. It's hard to describe because there are no adequate words for that type of tiredness. It's not like I could sleep and recuperate. The extreme exhaustion stayed. For the first 8 days after OHS every day was like the previous day, I was certainly not feeling "better" from day to day. It was one long blur of exhaustion and discomfort.

I personally had never had this kind post-surgical experience. After every other procedure I've had, I felt awful to start, but then a little bit better each day. Here there was no progression for a week.
I was so exhausted that watching TV was out of the question.
I could barely find the strength to keep my eyelids open. This was not sleepiness. It was physical exhaustion.

Getting up to sit in the chair in my hospital room took everything out of me. Sitting there slumped over was intense physical exertion - I wanted to be lying down but I kept at it. Eating breakfast took everything out of me. If I managed to eat breakfast, I felt like that was ALL I would accomplish that day.
The nurses would encourage me to take a sponge bath in front of the sink in the bathroom, sitting on a chair.
I did the least amount because it was too exhausting.
Also looking at my naked body was scary. Already too thin, now I was thinner but with a tire of water weight around my middle and swollen ankles. A scar, an IV, chest drains.

I was still attached to an outside pacemaker, which I think is standard. These outside pacemakers are removed once it's been established that your heart is back to beating at an adequate rhythm. My heart was not beating on its own faster than about 30 beats a minute. I later learned that in a certain (small) percentage of OHS procedures, a permanent pacemaker will be required after surgery because the electrical lines can be damaged during surgery. There is more of a chance of this happening if the surgeon has to work on both the top and the bottom parts of your heart. I had 3 valves that needed work, 2 replaced and one repaired, and the electrical lines are not "visible" lines.

I had no appetite. It had gone away when I was presented with a full meal in ICU soon after OHS. Also, who can eat when so tired? At some point a friend from my building brought me some homemade soup in a thermos (everyday for a few days). I would eat a little of that, and eventually I was able to eat the full hospital meals, even though I never wanted them. I ate only because my brain said I should, but not out of hunger. My appetite took a very long time to come back. The cardio nutritionists weren't very helpful as their specialty is lowering salt intake or being "heart healthy". I finally had a cancer nutritionist come round. At least he understood how hard it can be to regain an appetite.

Along with the external pacemaker, I was attached to IVs of anticoagulants and also orally taking anticoagulants, betablockers, diuretics and thyroid medicine (my thyroid was removed 6 years ago).

When my husband came to visit, I would walk down to the café part of the hospital to be in a crowd of interns, patients pushing their IV holders, doctors, visitors. I loved being in this mix of people, both sick and well, but it took everything out of me and the walk there was so tiring. I feared not making it back to the safety of my bed.

Sleeping was hard. Without meds, I usually woke up at about 3AM and then waited till morning. I was uncomfortable, I would cough as there was fluid in my lung linings. I had to sleep elevated. Doctors said that I should take sleeping meds as rest was important, so sometimes I reluctantly did.

My sternum did not hurt but it pulled. I was always aware of it. I remember asking when a sternum heals and when told "4 to 6 weeks" naively thinking that after 6 weeks I wouldn't "feel" my sternum anymore and waiting for that day. (Full disclosure: I can now say, 16 months post surgery, that I feel my sternum all the time. It's a presence that I am aware of and when I do something physical or carry groceries or a suitcase I feel it in my sternum. It's not pain and I don't have words to describe the feeling. The fact that I would always be aware of, and feel, my sternum after OHS was a surprise to me.)

The doctor assigned to my part of the post-surgery ward was a wonderful young Romanian cardiologist named Tanya (I could never remember her last name). She was hoping my heart would get back to speed, she told me it happens, she was okay with waiting it out.
(Perhaps in the U.S. they send one home with an outside pacemaker? And then readmit you if and when they have to place a permanent one? I don't know the protocols in the states anymore, where getting patients home is a priority.)

Doctors do a good job but they "speak" more and more with computers rather than with patients. There is not enough time in the day to spend hours with every patient in hospital. Getting daily patient information into a computer takes priority.
But in a teaching hospital there are always interns coming round to talk to you, do some simple procedure. The nurses are fabulous, overworked, and not always appreciated. Each patient feels central and wants to advocate for himself. It's an intense place.

Dr Tanya did a second "puncture" procedure on my lung linings as they had filled with fluid again. Fluid in the lung linings isn't painful, it just gives one less breathing room so it increases tiredness. I could feel energy returning (temporarily) every time my lung linings were "punctured" (4 times in 2 months). It was also amazing to hear (they were behind me) 2 liter bottles fill up in 5 minutes with the fluid that had been inside me.

After 2 weeks Dr Tanya said that I'd have to get a permanent pacemaker. I was really sad, because although I had accepted OHS, I hadn't thought about any of the other things ("side effects of surgery") that might happen. I felt unprepared. The day my pacemaker procedure was scheduled, my heart suddenly began to beat at a higher rate per minute than it had in 2 weeks. Dr Tanya called the surgery off. But by the next day, my heart had returned to a too slow rhythm...... and it was decided that a permanent pacemaker would be implanted (17 days after OHS).

Part 3: (to come) Pacemaker surgery

Ex votos in Napoli - a few hearts for you guys...

Motivated by Alina, I feel a need to write.

I've been in various ICUs in several countries over the years and my experience up until OHS was always fairly similar with every surgical procedure:
I wake up from surgery in pain wanting to be knocked out again and a gentle nurse gives me pain meds.
I feel nauseated, I vomit, she holds a vomit bowl for me.
After a few hours, or a day, I am better and am moved into a regular room where I miss the attention of an ICU nurse.

Cardiac ICU was not the same.
In cardiac ICU the nurses (a surprising number of males) are brusque and strong and very efficient. In cardiac ICU there are patients who may have to go back for a second (unexpected) surgery.
The nurses are there to save lives and they work very fast.

I was surprised to be washed thoroughly 3 times a day by 2 nurses working in tandem. It felt like a human car wash with one on either side of me.

When I woke up out of surgery, I was not in pain and I don't remember the removal of a throat tube (something I had been afraid of).
I had no nausea.
Even if I wasn't in pain, I was in big discomfort. I have never found the words to describe this discomfort adequately. Pain was not what I felt but I did not feel good.
I was given morphine and I asked for it again later because I like the way it puts off one's having to deal with reality.
At one point the next day, when I admitted to not having pain, the nurses wouldn't let me have anymore.

I remember being given a tray of food quite soon. Regular food. I was astounded because I was certainly not hungry. I was told that lots of patients are. Just seeing food made me feel sick.
I also do not remember drinking much and certainly no ice chips (which make a regular appearance on this site).

I had an outside pacemaker, an IV, chest drains. I had a urinary catheter.
I remember being in extreme discomfort, a feeling of suffocation if I had to lie flat for even a very short time (during one of those very quick 3 times a day human car washes, for example).
I remember not being able to see any other patients but hearing them and so imagining their stories.
There was an old lady who tried to leave in the night. The staff was very stern with her. She kept demanding her urinary catheter be removed.
There was a man (one of the ones who had to go back into surgery for a second go) who shouted at all the nurses. He was in a really bad mood.
There was a young boy who called out softly many times a night.... with a nurse answering that she would be there when she could.

I was "suffocating" (or at least having trouble breathing) because my lung linings were filling with fluid. This is a not an unusual reaction as one's organs react instinctively to the trauma they have been through in surgery.
My lung lining was drained with a puncture procedure in my back, done by an intern. This is not a painful procedure but the intern had a slow tenuous way of working. I was sitting up and forward in the arms of a doctor who guided him with her voice but let him find his own way. I believe strongly in interns being able to "practice". I believe strongly in teaching hospitals where great doctors are also great teachers.
But it's hard. I had 3 more puncture procedures done by surgeons and cardiologists (later, when I was out of ICU) and they had a very quick practiced way of working. Each time I felt so wonderful when my lungs could work at full capacity again.

My husband and one of my sons came to visit everyday dressed in scrubs. When they left, I would pass a sleepless night in ICU.

On day two nurses took out my urinary catheter because it was said I was leaving. However, for whatever reason, I did not leave and so I found myself in ICU without that catheter and having to ask for bedpans from ICU nurses who had many more important tasks. It was so uncomfortable to arch my back to be on a bedpan and hard to stay on it and wait for a nurse to come back. I was always worrying about the next time I'd have to call for a bedpan. To my intense surprise I also had several major bowel movements (in the middle of the sleepless night!!), something that (from my experience) never happens so soon after surgery. Usually it takes days/a week to get your bowels moving....

With all this uncomfortable time in ICU, I was getting more and more anxious. My regular anti-anxiety "techniques" did not work. I could not breathe deeply because my lungs had fluid. I could not close my eyes and visualise beautiful peaceful places because all I could see with closed eyes were morphine induced black patterns and scary shapes. I knew what they were, they didn't frighten or surprise me, but they were there.
I finally started repeating certain mantra words in my head like "Relax " "Hang on".... It was all I could do. It wasn't enough.

I was feeling more and more sad about the other patients . I had empathy for them but I couldn't help them, I couldn't talk to them, I didn't know their stories. I just felt their pain.

Nurses jabbed me with needles a lot. When they couldn't get a poor overworked vein to work they would just keep trying elsewhere, 5 times if need be. ICU nurses are efficient and unrelenting. They'll save your life, but not your psyche. I know it has to be that way, but it is emotionally painful.

At some point my overworked brain/psyche/emotional center could no longer take it (on the 5th day in ICU) so I went into post-anasthesia/surgery hallucination otherworld - a place where I think we go when the experience is overwhelming.
I remember thinking I was in a lovely restaurant above ICU. Nurses were still working on me, but there was wine and people having a good time. There were interns and doctors and families. My husband was there. It was a lovely old-fashioned Parisian restaurant. I remember thinking that when this was all over, I would take my son, Emeric, there because it was nice.

When I came back to "reality", I was being transferred to a regular room. I don't think I've ever been as grateful. I remember wanting to kiss the floor if I could only get up. My husband was there and I said: "Wasn't that restaurant above ICU great?" and he told me that there was no restaurant. It took me a long time to believe him. Sometimes I still think I was there.
That night in my own hospital room I slept soundly for the first time in 5 nights.

After that night, I didn't sleep all night again for many many hospital weeks to come.

Part two (after ICU) to follow.

When I was waiting to have OHS, many friends (and family members, especially my mother) said : « Everything will be alright ».
For me, this statement wasn’t really helpful, even if of course we hope everything will be alright.

Those who said « I’m sorry you have to go through this. This is terrible. I feel for you…. » were more « helpful » to me because they acknowledged and validated what I was feeling right then. Not what would be in the future, but my present.

The present is here, right now.
Of course, we hang on to the future as a time when we’ll « feel better ».

Sometimes we also feel like we need to be/get « better » quickly, for friends and families.

What if we acknowledged where we were ? There are awful days, there are good days, but there are many days with both good and bad components.
Surgery lasts hours, recovery lasts longer.

Everyone has coping strategies and ways to make it through hard times, some very different from mine.
Each patient needs to do what they need to do, what gets them through.

Last year I wrote an essay (for myself) about my first 4 weeks after surgery. When I re-read it I think wow, that was intense. And that’s how it was at the time, even as those memories fade.

I once volunteereed on a phone crisis help line and we were taught to listen and to acknowledge and to say « what do you think ? what do you want to do ? what do you feel ? » Being there and listening were more important than making things all alright.

Take care everyone.

People partying because their heart valves are okay. (just joking.... I was in Napoli a few days ago...)

15 months later

When you have a big pacemaker bulge, trying on bathing suits can be a challenge.

INR results since January 2016 (OHS in April 2015) (target INR 3 to 4.5):
4.17
4.38
3.21
3.67
3.5
2.58
4.22
5.39
5.33
2.6
2.37
3.03
3.64
2.87
Essentially the same dose of meds. ...with a few minor changes....almost always end up back at the same dose

After my Holter test, cardiologist said I have arrythmia and tachycardia, which of course I knew because I can hear and feel my heart racing at rest. He said I was "safe" in the sense that being on an anticoagulant will protect me from developing clots, but might think about going back on a betablocker. My 7 month depression lifted miraculously when I reduced and then discontinued betablockers a year after OHS. I had shared having depression with him months ago (with little reaction on his part) but now he confirmed that betablockers can contribute to/cause depression. He said I could try another one.
I had been so happy to have gotten my meds down to the 2 essential ones, levothyrox (my thyroid was removed about 6 yrs ago) and coumadin. Now I have to ponder all this. I just want to move forward, as everyone does. There are no right decisions, just the ones each of us make.

I was looking at "Humans of New York" and read this on a post by the mother of a young cancer patient. I think it sums up how OHS patients can also feel when having to suddenly make decisions in a field where we really aren't experts:
"I don’t understand this stuff but I still have to make these decisions. I think I’ve made all the right choices so far but the next one could be the wrong one. It’s so stressful. You know that feeling you have when you’re waiting for a call back from a job interview? That’s all the time for me. Except it’s not a job. It’s my life. I push all the emotional stuff to the back burner. I feel like the only way to keep moving is to stay numb. My only therapy is talking to the other parents of patients here. We’re all going through the same thing."

Yesterday I had to lie down all day because of a migraine/nausea episode and so was very aware of my heart (loud mechanical valves) ticking away. Then I realised the beat was completely irregular and freaked out. Called the cardio office and have to have one of those Holter tests next week. I SO don't want to be back on betablockers or any other meds for that matter.... I so want to put OHS behind me.

One year and 2 weeks after my OHS in April 2015, my 7 months of depression lifted. Two days before that (with my cardiologist’s agreement) I stopped taking (after several weeks of increasingly lower doses) the betablockers that I had been on for a year. Coincidence ? Perhaps.
There was also therapy and qi gong and being very open about my feelings and allowing time to go by.

I remember waiting for my one year anniversary after reading the amazing blog of «defective heart girl» who said that that was when her energy came back.
https://defectiveheartgirlproblems.wordpress.com

She writes very eloquently about her physical journey after OHS, and then her psychological journey and the final realisation that «the pre-surgery me does not exist anymore » :

« Every day was a challenge, but most days I got a little better. Some days I got worse, but then I got better again. It took a FULL YEAR of concentrating solely on my physical recovery to get to the point where I felt as strong as I did the day before my surgery. And for six months after that I was riding high, full of energy with a new lease on life. I thought, OMG I did it. I’m back to where I was before this interrupted my life. Now I can get on with things and finish my PhD.
But no sooner did I start putting the wheels in motion, then I was rocked by the emotional toll of what I had just been through. The scientist in me had totally ignored what the patient in me had been through. All of a sudden it was like I was reliving the days and months after my surgery, but this time emotionally instead of physically. As if when I lived through those moments the first time, my brain was archiving all the emotions for later because it knew I couldn’t process them. And now that I was physically healed, it was unpacking all the fear and pain and the anger it had set aside. I was diagnosed with PTSD because I had essentially experienced my surgery as a trauma. Even though my scientific brain knew it was necessary, my body rejected the invasion. Which when I think about it makes perfect sense. Having your chest cracked open is like a violation of your very being. Having someone reach inside you and stop your heart, while a miracle of modern medicine, is very hard to accept.
I found a therapist and again I took it one day, one hour, and one minute at a time. I put one foot in front of the other and kept going. After another year and a half, I felt like I was on the way to getting my life back. And more importantly I felt was on the way to getting back to who I was the day before surgery, someone who needed to finish their PhD. I bought a plane ticket to England and cleared my calendar. But a series of visa issues ended up delaying my trip, and for the first time in years I found myself with the time and space to stop and look around me and think about where I was in my life. And I had this revelation. I realized I’d spent the last three years trying to return to pre-surgery me, but pre-surgery me didn’t exist anymore. Sure I could get back to the physical equivalent, but physically I really wasn’t the same. I have a four inch synthetic tube as the root of my aorta, and my sternum is laced with steel wires, and I have an bad ass eight inch scar. Not to mention a couple tattoos I got along the way.
But also, I wasn’t emotionally or even psychologically the same. After what I had been through, I cared more about doing what made me happy than before and I cared less about what other people thought I should be doing. I had a much clearer sense of what mattered and what didn’t and what was worth my time and energy and what wasn’t. It dawned on me that going back to England to finish my PhD felt like being pulled backwards in time, not forward. I realized that putting one foot in front of the other after surgery hadn’t let me back to who I was, but it had led me to who I wanted to be. Surgery hadn’t been a detour from the road I had been on, it had been an exit off one road and an entrance onto another. So I cancelled my trip, left my thesis unfinished, and I haven’t looked back since. »

It’s been a year since I had OHS, with two valves (aortic and mitral) replaced with mechanical valves and one valve (tricuspid) repaired. I also unexpectedly got a pacemaker 2 weeks after OHS.

One of my favorite heart valve bloggers, Dan D, once wrote : « Surgery fixes the anxiety of waiting for surgery. The problem is that the anxiety of pre-surgery is sometimes replaced by the anxiety of post-surgery : will I ever feel as good as I did before I found out that I needed surgery ? I hope so, but of course I was also 3 years younger then. »

I think that surgery itself usually goes well. Surgeons are skilled. I was never really afraid of surgery itself because I couldn’t control it. But I knew that afterwards I’d have to fight the recovery battle.

Getting a pacemaker and having my lung lining drained 4 times in 2 months were my unexpected surgery « side effects ». I was also cold all the time (all summer) and lost my appetite, I didn’t sleep well for 6 weeks. I was exhausted. I had expected that and the tiredness lasted a good 6 months, maybe a year. I certainly didn’t and don’t want to run a marathon.
I never had pain, even after surgery, just an intense discomfort, a suffocation in the lungs, an inability to get comfortable. A psychic trauma.

Before surgery I was terrified of having to take meds (coumadin), but after stabilising it turned out to really be no big deal. I haven’t changed my diet. I only wish someone ( a doctor) had told me that it takes MONTHS to get stabilised (not that one is ever really stabilised). Then I wouldn’t have felt so terrible about my INR going up and down. I’m lucky I have a lab near my house and a lab near my office.
All the debate about mechanical vs tissue valves on the site was hard for me as one doesn’t always have choices, and no choice is perfect. One just has to move forward.
I empathise intensely with those who have had multiple surgeries.

I should be stopping my betablockers soon and look forward to that because I think they make me tired. They also give me very vivid dreams. And as far as other side effects, from meds or from surgery (who knows) I feel itchy around my shoulders, I fart a lot more, I have weird heachaches that come and go everyday. They are intense but don’t last long. My eyesight also took a drastic plunge but I guess that was expected at my age. I can’t read a thing anymore without glasses.

My scar is not that noticeable but the big bulge of my pacemaker certainly is. I still feel a pulling in mu chest and have decided that I will always feel my sternum, something I didn’t expect.

I’m lucky I live in a country where I could stay in hospital for 4 weeks and then in a rehab-hospital for another 3 weeks. Even after that I had to go back into hospital (by ambulance) for 2 more weeks when my lung lining needed to be drained for the 4th time.
I admire all the amazing patients who leave hospital so quickly, after a few days. Even after 7 weeks in hospital, I was freaked about going home.

What’s been hard for me is the depression/decline that happened about 6 months after surgery that I still can’t emerge from. After going through the physical part of surgery and recovery, all the emotions, fears, traumas come out as I try to move into a new post-surgery reality. One can only keep moving forward and it’s not always easy to adjust to the journey. Motivation is hard for me.

I had to stop looking at the heart-valve site for awhile because seeing everyone’s stories was too much to bear. It’s how I felt in intensive care, when I could hear other patients anguish, but I couldn’t help them or really know their stories.

One year doesn’t feel like a celebration, but instead like the place where I am a year later.

As I get over the physical repercussions of surgery and move into an emotional/mental rehash of it, I am grateful for those on this site who shared with brutal honesty.
My favorite posting was from Dan D who described OHS as « like getting hit with a cruise missile ».
I hung onto that wonderful analogy when I had to.
It's not about physical pain, it's about emotional upheaval and myriad repercussions in your body when your center is traumatised.

I don’t feel « better » than I did 6 months ago, but then my surgeon did not tell me I’d feel « normal » in 4 weeks, but rather that feeling better takes a LONG (indefinite) time.
I’m not running marathons and I can’t take flamenco classes, but I : ride the subway to work, cook, clean, shop, carry groceries while walking home, worry about my sons...
I still feel a pulling in my sternum and find my pacemaker to be an unsightly bulge.
At the end of the day, I am tired early and just want to fall into bed without brushing my teeth.
I can’t think too much about the meds I’m on or another cardiac problem in the future because I get queasy easily.

I feel empathy for patients out there as they try to make sense of OHS and are forced to make decisions when there are no obvious « right » ones.
I feel empathy for partners who experienced this in a way I haven't and that I cannot ever really fully understand.
It's about the journey.

If I could, I’d keep a pillow pressed to my chest all the time. I’m just skin and bones (unusual in the cardiac world) and I feel there is nothing between my sternum and the world. A pillow on my chest makes me better able to handle the very loud ticking of the valves, a bother when I want to read or when it’s quiet and they are the only sound. I long for the day when I will no longer feel my sternum – the sensation, not necessarily painful, but uncomfortable. 5 months post-surgery I’ve realised that day may never come. Feeling my sternum may be my new reality.

4 and a half months post-op my chest scar (which is very thin) has "bruising" all around it that wasn't there before. Little veins that show up.
It weirds me out so I can't look at it or think too much about it.
I am sometimes very aware of the scar when I've done something physical and then feel it there, in my chest, afterwards.

Saw my cardiologist this week and he said that after OHS one improves, then reaches a plateau (where it seems like one is not improving and it feels disheartening - where I am now) and then one improves again.
This kind of info is very helpful to me.
Sometimes I feel like I've gotten over surgery, but it would be nice to feel better than I did BEFORE surgery!

Any other "adult long-term survivors of childhood Hodgkin's" out there? I just realised I got everything one could get as a "long term survivor":
triple valve surgery, breast cancer, thyroid removal because of nodules, early menopause, depression, anxiety and chronic fatigue.
Nothing else left on the list.

3 months after triple valve surgery

pacemaker bulge

I have no problem with my zipper scar which I know will soon fade and match the rest of my skin like my thyroid scar and my spleen scar, but I just can't get used to my pacemaker (which was put in unexpectedly 2 wks after OHS) - its prominence and big bulge! Just don't want to look at it.
Are all pacemakers like this?? Uggh!