Question: Dear Dr. Iliri,
This is xxxxxxxxxxx, OCD girl with the past cardiomyopathy. I wanted to thank you again for all your reassurances during my recent issue with the State Department regarding my medical clearance. I am still waiting for the official word, but I think I will receive Class 1 clearance which will be conditional and just one year, instead of the usual five years, but can be converted to normal once I have had repeat tests in a year. I hope to hear this month.

Today is my birthday and I am trying very very hard to be hopeful today that I can start to live a more normal life. In the morning we are leaving for a week's vacation at the beach, then I am traveling for work- to Taiwan- my first international trip since having cardiomyopathy. I am terrified, about the beach and Taiwan because I am so accustomed to my compulsions regarding food/drink. I am packing every small meal for the beach, although I used to enjoy eating every meal out, but I am so fearful of putting on weight. I am really really scared about Taiwan as there is no way I can pack food for that trip, so I will be eating/drinking whatever my colleagues are eating.

For the past 20 months, since my diagnosis, I have weighed myself every day, at least 10 times a day. My weight has fluctuated in that time no more than 5 lbs ever, but I have been alarmed whenever it goes up. It is up about one pound today from two days ago, probably hormonal, premenstrual, but I am so scared. Why would a doctor tell me one pound meant I was in heart failure and about to die? I know he was angry and being unreasonable and I'm normally not a foolish or dull-witted person but I was so scared when I was ill, that it made a deep impression.

Here is where I need your help. When I have my first water in the morning- before my co-workers are there- I keep my feet up until I am sure I've eliminated all the fluid. My old doctor told me never to stay on my feet after drinking. I still get so tense walking around or standing when I've had a lot of water with a meal- and I feel so sure I am retaining fluid. I make sure whenever possible to at least sit still when I've had a drink, which of couse, is many times throughout the day. I do feel like I am releasing more fluid when I am still. I exercise daily- but that's separate and I manage to feel ok. Is this doing anything or is it my imagination? I know sitting is apparently terrible for you and I'm fidgety and active and hate sitting usually, and never lie down before sleep. Does it have any real effect on diuresis? I read you magy urinate 10% more when lying down but of course I can't do that during the day. So is my sitting down doing anything at all? When I am active, I mean walking around the grounds at work or at least standing, being lightly active, not doing anything which would make me sweat.

I have been doing this nearly two years and must stop, I know it. If I were truly to retain water would I get other symptoms like swollen feet? Would I gain moret than a pound or two? I am so focused and fixated on this issue that it has taken over my life. I literally have a calendar of when I let myself stand up and do things during the day and when I must be still. I am so crazy and yet I can't stop. If you can tell me that there is no clinical basis to what I'm doing, it will help. I had my last great echo just three weeks ago and yet already I start to think, what if something has happened again?

thank you again, kind and wise doctor. this year I must beat this OCD and learn to live again.

Best to you,
xxxx

Thank you Dr Iliri. I am trying so hard to control my compulsive behavior, especially as I am on vacation this week but I am so programmed to do these things now that I find it impossible to stop. We are doing all the things of my childhood but I am still consumed with thoughts of fluid and my heart.

This evening, before dinner, I weighed myself and was about 2 lbs heavier than morning. I have only eaten a 4 oz serving of yogurt, then a 6 oz serving of whole grain fiber cereal today, both weighed on a scale. I have had plenty to drink, though, and feel I haven't needed to urinate very much. Isnt this compelling evidence that I am retaining too much fluid?

Thank you so much for your kind regards as well as all your help over the last year. You have helped me so much.

Best,
xxx

Dear dr iliri,
If gaining 2 lbs would have been sign of danger when I was sick, why is it different now? It is so hard for me not to be terrified of water when I was told it would kill me. I wish I knew there would be some definite sign I was sick again but I never knew I was sick when I was sick though, in retrospect, as youve pointed out, there were some signs such as tiredness and orthopnea.

With water retention that is dangerous would it quickly lead to swollen legs/feet? Coughing? I am trying to relax but always carry my scale as it seems only way I will ever know if I am retaining too much water and need to get medical help.

Thank you so much,
xxx

Dear Dr Iliri,
Thank you, I am trying so hard to believe and be confident but all those frightening times dont quite feel over. I have had OCD for a long time, but always well controlled and I had always been very healthy.

When I was sick, would several pounds definitely have been from fluid retention? Could it not have been from stools, etc even then? I understand about the heart needing to be able to pump blood to lung and kidneys but why isnt extra fluid (perhaps from too much sodium or hormonal fluctuation) dangerous to me now? I have been paralyzed with fear often, feeling sure that the water I drink will stay in my system. I dream of it often.

If I had dangerous water retention, as sign of returning heart, would I definitely have other symptoms as well? As I'd mentioned before, I was never on diuretics and my weight was stable when sick, but I had SOB on stairs, some orthopnea, and after ablation the skin on my shins changed from tight and shiny to normal. In general, though, I felt normal and was able to do everything I was used to doing and only medication allergy brought me to dr.

One last thing- is it my imagination that standing/walking causes substantial water retention? I try so hard to stay still until I've "passed" all the liquid I've drunk.

Thank you, Dr Iliri. I know I must get over my fears since I have big plans for my career.

Many many thanks,
xxx

Dear Dr Iliri,
Thank you so much. So in absence of visible edema and my morning weight being stable, I dont need to worry? I feel so scared knowing I walked around for at least several months with a weak heart and never even knew. And yet at that time, I never thought of water retention or anything heart- related. Also my weight was stable even during heart failure yet my Pro BNP was over 8000. And I certainly didnt notice decreased urine even if that was happening. Does heart failure related water retention usually result in oliguria- very notable urine decrease and obvious weight gain? I am so conscious of very very tiny changes- like drinking half a liter of water and not feeling strong urgency sometimes and yet sometimes I do. I must stop, I know or I wont be able to work in Cambodia.

Thank uou so much for all your help. I know my last echo was just a month ago so all must be ok but the urge to get checked again is so strong.

Many many thanks,
xxx

I don't know how to make myself forget this. I am so conscious of every drop of water. a

Dear Dr. Iliri,
Thank you so much. It is very very helpful to know that oliguria is something which would only occur in very advanced heart failure. So it it possible that when I was ill in 2014, with Pro BNP of over 8000, and with EF of 25, that I wasn't experiencing oliguria? I didn't notice it, and wasn't prescribed lasix even though I had a cough. So there is another mechanism which is keeping water in the cells that goes beyond simple- water in- but not all coming out? I don't know why I am being so simple-minded, but it was imprinted on me that drinking any liquid was dangerous so I became quite certain that anything I drank would be retained and further weaken my heart. I guess I am confused because it is not clear to me if I was experiencing any edema while I was so sick- my doctors kept saying I had no peripheral edema and my lungs were clear, despite my cough, but obviously my heart was weak and I know I experienced some orthopnea.

I know I have to forget being hospitalized and having my liquids restricted and urine output measured. I cannot live this way. I know I have to trust my doctors and you. My echo was so recent and I am not due to have another for a year now.

So it is completely ridiculous that I try to stay still at my desk after drinking? Would my weight and urine output be probably nearly the same even if I was active, as I like to be? I do work out, every day, without fear, but I have somehow worked that into my crazy calculations. I am someone who hates to sit, but I make myself sit down to make sure I don't retain water. It is the biggest problem of my OCD.

I have just now bought Easier Than You Think and will begin reading tonight. I am holding on to the thought that oliguria only happens in advanced heart failure and remember that I do not have heart failure.

Thank you so much, Dr. Iliri.
xxx

Dear Dr Iliri,
Thank you for the suggestion of the Carlson book ; it is already helping a lot. So much of our world is created in our heads and I have unfortunately created a very scary world. Almost every night I still dream that I am waking up and my body is so overfilled with fluid that one could squeeze my arm and get water like a tap.

So is it true then that I could not cause heart failure by drinking too much but I also cannot "cure" it by measuring and sitting and being careful. I am not actually doing anything but torturing myself. Every day I am under the impression that my compulsions are what is keeping me out of heart failure. I used to be so fearless, almost to a fault, sometimes traveling on my own to dangerous places. Now I even fear the peaceful beach because I think at any time or place my heart will weaken again, without warning. That is, what this is about, I think I am trying to make sure I catch any heart changes before I get so sick and I've latched onto fluid as my old doctor kept stressing it so much.

So if my heart was weak, my ankles would swell, I'd be tired, and all those old symptoms would come back whether I measured my fluids and tried to keep my feet up or not. I am not doing anything medical. Would you tell your patients with cardiomyopathy to only lay down? My old dr had some very harsh ideas...

I will continue to read and work on my anxiety. I know I have to fix my thought patterns.

Thank you so much, for everything.
xxx

Dear Dr Iliri,
Thank you, you are helping me so much. So all my compulsions are simple delusions as well? As I had healthy echo 5-6 weeks ago and nothing has changed- certainly my heart status remains the same?

So by the time I had decreased urine output, real water retention, and true heart dysfunction, I would have had other symptoms as well? I am so so focused on the water, and it would actually help me to think that other symptoms would come first. I don't think I even had decreased urine output when I was sick. I do know I was tired, with orthopnea and SOB when I was going up a lot of stairs. I do the stairmaster at the gym at high intensity now without any trouble. I know I have to rely on these things but my doctor's words echo in my head even as I am climbing stairs "water will get you- if you are told you are cured and go off meds, you will become overloaded with fluid and that's what will kill you." That sentence haunts me every minute of my life.

Thank you so much, Dr. Iliri. Your help means so so much to me.

Many thanks,
xxx

Dear Dr Iliri,
I am attaching a video of my leg/foot, as I noticed they looked quite red as I got out of the shower. Does it look like when I press, the white blanched spots are taking too long to bounce back to normal color? Does it look like my circulation isn't good? My legs were not tight or swollen, but looked flushed as I got out of the shower.

I am awaiting the official word of my state dept clearance but I am preparing for leaving as soon as I am approved and I am very very anxious. It is two months since my last echo and I am starting to think I will be too scared to travel overseas without a new echo. You said if I had any impending issues, it would have shown up on my echo last time? But I looked at my reports and couldn't help but notice how my EF reads, 65-70 last July and also in February 2016, but April was reported as 64, and then 65 in in XXXXXXX but 60-65, rather than 65-70. I know these are the small changes that are not signficant but I am so anxious that I keep looking at these reports again.

I am most afraid of being so active all day that I will not be able to adhere at all to my habit of trying to sit still after drinking water. In heart failure related oliguria is it very pronounced- meaning I would basically have no urine, rather than this small bit of variation I am trying to monitor myself with normal urine output? I keep thinking standing and walking makes me retain fluid and it's causing problems in my work. If this were the case, would I have had other symptoms first, such as visible edema or cough or something? I don't have other symptoms but am getting so frightened of being in another country now.

Until two years ago, I traveled all the time, for work and for vacation, but my doctor had said I should never get on a plane. I know I was sick then, but whenever I am afraid, that doctor's negative ominous words keep coming back.

Thank you, Dr Iliri, for everything. I am just getting so scared before I may have to leave and thinking I need to somehow get an echo to make sure I am ok to go. I see now my last echo was XXXXXXX 17th, so recent. I must calm down, I know, but I am so afraid.

Many many thanks,
xxxx

Thank you so much, Dr. Iliri.
I was trying to upload a video, but it looks like only images can be uploaded. This is the link to the video:
https://www.dropbox.com/s/yyyyyyyyyyyyyyyyy/File%20Aug%2011%yyyyyyyyyyyyyyyyyyyyy

It shows my red foot, and then when I press on my skin and it blanches, I wondered if it was taking too long for the blood to come back, showing bad/slow circulation. I had seen something on the news about how this simple test of how quickly skin bounces back to normal is a sign of your cardiac health.

I feel so certain all the time that I need a new echo, that mine is outdated. I think I would feel better if I didn't know that in some months I will need another echo, and for me, I would rather it be sooner instead of later, when more damage may be found. I think constantly if only I had noticed that the skin on my shins was getting tight, I could have found my problem before I was so critically ill.

Then again, ever since I've been cured, I have been thinking that my urine output is too low, that I am retaining fluid, and it has been about 20 months and all my echoes are normal. My doctor says after next year's echo, maybe I won't need follow-up for many years unless I have symptoms. I wish, of course, that I had never gotten sick, as I haven't felt normal since I was diagnosed. How could it be that I didn't feel radically different at EF 25? I know I did have some symptons, as you have pointed out (tight shins, orthopnea, of course the PVCs) but I mostly feel normal.

So it would be very very strange to have water retention/low urine output as a first sign of returning cardiomyopathy? I would more likely have other symptoms before that? I need to be able to forget about fluid as I have so many work/parental duties going on and it's about to get much more intense when travel becomes a big part of my job. I cannot keep up the weighing/measuring and drinking on schedule while I am traveling. Are you sure that any control I feel in measuring and sitting/putting feet up is purely imaginary and if I were to behave normally, everything would just be the same?

Is it pointless for me to schedule an echo with another doctor? I know that any relief I feel is temporary, and within a month, I am as scared as ever. I don't know how to stop this fluid fear, and I know I have to shake it in order to live a normal life.

I am simply imagining that I am controlling heart failure and edema by doing crazy things? I can stop it?

Thank you, Dr. Iliri. You give me hope that I can beat these crazy fears.

Many many thanks. Happy weekend to you.

xxxxx

Dear Dr Iliri,
Thank you so much. I re-read your responses to remind myself all the time that I am ok. I hope that it will really start to stick with me soon.

I had an unfortunate setback tonight. I met an old friend who is an anesthesiologist who hadn't known about my illness. I told him about my PTSD and OCD and he said "don't worry, only a heart attack would cause rapid EF decline". I asked him about a slower decline and he said "well that's why you need to be followed closely". It made me feel scared, like I need more frequent echoes.

There is an online community of heart patients I sometimes visit and people often report dramatic EF changes from month to month, such as 15 to 45 or 45 to 15. These aren't people with PVC-induced cardiomyopathy, but all sorts of ailments but their stories worry me. At 8 months with no carvedilol, do you think I'm safely out of zone where medicine was making my heart stronger?

My doctor said that without shortness of breath or swollen feet, or 10-15 lbs of quickly gained weight, that I can relax. Would you agree? I sometimes feel like I can feel my heart enlarge and I know that's totally crazy. I am just always aware of my heart, of fluid, of any bodily sensations.

Are you sure my echo of 7 weeks ago is still sufficient to assure that I am still healthy?

Thank you so much,
xxxxx

Dear Dr Iliri,
Thank you again, so much, for all your help. My doctor says I don't need an echo for a year (which means next June/July) and then only every three years. Do you think I should be examined more frequently? I am haunted by the people (and they are actively ill, so I know it's different) who report on heart boards that their EF has gone down from just weeks/months before. I have had normal echoes now for 19 months, and have been off of all medications now for over 8 months. Do you think I am out of the zone where my improvement would have been solely from medication? I think I worry so much because I know there is always another echo coming up. If they were done forever I would think it was over, but I always think I need one sooner, to catch any damage before it's too late.

A doctor wrote on the heart discussion board that EF never goes down without a disease process and that with a lowered EF you cannot exert yourself and you would know that something was happening. Would you agree with that? So without PVCs, I would need a new disease process in order for my EF to fall? And as I had symptoms before (as mild as they seemed at the time, I know now they were alarming, like waking up out of breath, and not being able to walk up stairs without resting) would I have them again if I were sick? I become obsessed with the idea of having an EF of 50- somewhat low but almost normal and unnoticeable until it goes all the way down to heart failure where I was before. I feel like I need monthly echo or no echo. I can't stop thinking about EF and echo.

So I know I must stop this. As I am packing for a work trip, I am packing two scales- one for measuring my food and one for measuring my weight. And I have drink cups with measurements so I can drink the exact same amount each time. This must stop but I can't seem to stop as it feels protective. I panic as soon as I empty my bladder that I will never be able to urinate again- that all the water will stay in my body. I dream of being able to squeeze water out of my skin!

Thank you, Dr. Iliri. I am trying very hard, as I have so many challenges and opportunities approaching. I know I need to get over this obsession but your clinical advice is so valuable to me, as my own doctors simply tell me to relax without being willing to explain why I can relax. You have been critical in my improvement. I hope I am able to live a normal life again. I know you will have been a big factor in my recovery.

Thank you so much,
xxxxx

Dear Dr Iliri,
In my fear and obsession before I travel across the world, I've been doing research about heart and kidney function and posture, and everything I see compares people being upright or being supine or prone. I spend much time sitting, at a desk, and in my mind, I am helping my body not retain fluid, but is sitting the same as standing in terms of possibly retaining water?

Also- I was at the emergency room with my niece (for her minor injury and she's fine) and we could hear the entire visit next to us. A young woman explained she had a weak heart with EF 45-50 with no known reason. My ears pricked up because this is my great fear- having minor dysfunction with no outward signs, and then finally becoming very very sick with CHF as I did. What would cause someone to just start to have a weakening heart? At EF 50 (my nightmare) would this young woman have been having symptoms? Would she be described as having heart disease? I am always so afraid of starting to slowly get sick in this way.

If I was retaining water, would my ankles/lower legs definitely be noticeably swollen? I take comfort in my legs which show no signs of edema, but I am always always looking for other signs somehow that my recovery period has ended and I am getting sick.

THank you so much, dear Dr Iliri.

xxx

Dear Dr Iliri,
Thank you so much. This week my mother was prescribed hospice and my father, a long time diabetic, was diagnosed with kidney failure, so my anxiety and stress are high. My EP believes stress from taking care of my sick parents and my divorce contributed to my PVCs so I get nervous when things are so stressful.

I am trying to believe everything you (and my cardiologist,( who agrees with everything you say)But it's so difficult as my OCD has become so overpowering since my cardiomyopathy and ICU stay.

I am humiliated by this, but over the last three days, I have decided to measure voiding output in the evening when I am home- drinking 750 ml of herbal tea- over the following two hours I have had 500 ml, 900ml, and 700 ml output. I know there are so many variables, such as what I have already drunk previously and the timing of when I am drinking, etc. but my OCD is such that all eating/drinking occur at the exact same time, and with the exact same measured amounts. The only variable in the evening would be if I am sitting/relaxing or if I am moving around and doing things like housework. Is this a normal amount of variation? I have to stop feeling like I cannot move around after eating/drinking as it will not be possible once I am traveling for work. I wish my former dr had never told me to always put my feet up if I had anything to eat or drink because I would retain water otherwise.

I don't have any visible edema, my feet and ankles/legs never seem to swell but can that happen and not be visible? My weight is usually 1.5 to 2 lbs heavier at night but usually back to normal by morning. When it seems to stay up 1 lb in the morning, I am sure I am in heart failure (my doctor said go to ER immediately if I was up 1 lb) and have to struggle not to take myself to the hospital.

Maybe I need another echo to calm down. But my doctor will see no need and I will need to find another dr who will have a different tech, different machine, different interpretation, etc. and I know I will be writing you, panicking that new dr said my EF was only 55 or it had gone up to 75 (once the calculated EF I saw on echo machine was 81, though dr looked and said 60). I wish I had never heard of EF. But is it true that without an active disease process EF will always stay in a normal range ?

I am trying to remain calm, but the worry and the OCD is just overtaking me. You are such a source of knowledge and hope, though. THank you so much.

Wishing you a wonderful weekend,

xxxx

Dear Dr Iliri,
Thank you so much. I have been needing to provide more medical records for my security clearance and came upon my MRI of November 2014. I had so many pvcs they could not measure EF or get LV measurements. But I had midwall stripe which I know now is a sign of very poor prognosis. I know in studies, people with that stripe are normally dead before a year. Do you think that means anything for my future now? I know after that MRI (done by famous cardiac imaging specialist at NIH) my doctors all seemed to think I had a poor chance of surviving. It was my determination to find a cause that led me to find my EP despite my doctors telling me I was doomed.

I am still so confused. I had severely enlarged LV, right heart also starting to fail, bad mitral regurg, pro BNP over 8000, low EF, but I was still going to the gym every day. I was more tired, and I had orthopnea and tired

and after diagnosis, I realized my shins were quite tight, but I was never out of breath during normal activity and my weight was stable. Also despite the orthopnea I didn't have pleural effusion and I was never prescribed diuretics. I always assume when I was that sick, I must have been retaining a lot of water and had reduced urine output which is why I am so crazy and vigilant now, but is it possible that I was so sick and yet urine and weight were normal? I just wish now that I had felt very very sick during my illness so that I could be reassured that I am well now. As I felt mostly well during my illness, I keep thinking I have to be so careful. I am quite convinced that keeping track of my drinking/urination is keeping me healthy.

Of course I do research on fluid retention and I read that sitting or standing for long periods can cause swollen legs. My legs/ankles/feet never have any visible edema. My thought is then that I should walk constantly, but then I always think I urinate less when I am active. I know that this pattern of thinkng simply cannot continue but I can't stop. I take buspar, xanax. I see a therapist and a psychiatrist but I don't feel they help me very much.

Tonight as I read about studies on that midwall stripe, I know I should feel lucky, but instead I feel doomed, as if I belong in that group of people who have all died now. It is so strange to have been told to plan my own funeral and then weeks later be told I'm cured. I think my mind hasn't yet processed my recovery because I am afraid I will be told that, in fact, I am incurably ill and will be dead soon.

Thank you Dr Iliri. I am so thankful for you and your words of calmness as well as your explanation of clinical matters. I am hopeful this is all temporary and I will be enjoying my life as a healthy person again soon.

Many thanks,
xxxx

Dear Dr Iliri,
Thank you so much, for everything. You do help me, very much, but I know I have to try harder if I ever want to feel normal again. I feel so much damage was done to me by the one bad doctor I had, who told me I had no chance and I would overload with fluid and die and yet I cannot seem to have the same confidence in far superior doctors like you and my current cardiologist and electphysiologist.

I know my best route is to simply forget, as you have said, and my other doctors, but I find that so hard to do. All day as I am on my feet, I worry worry worry about fluid even while I smile and pretend that I am ok. When I get home, I quickly make my son's dinner so that I can put my feet up as much as possible. Are you sure that that I am purely imagining that I am urinating less when I am walking around rather than sitting? I know that most people are at most risk of retaining water when sitting still, like when on a long flight. So is walking around actually better than sitting when it comes to my great fear of fluid retention?

I read that the best way to test for ankle swelling is to measure with a millimeter tape. Because I am so crazy, I actually did that today. My morning measurement appears to be the same as my end of night measurement. My weight is about 1.5 lbs heavier at night than in morning. Would you say ankles being the same size is good evidence (along with everything else) that I have no water retention?

I am attaching a photo of my dear little son, because I feel as if you are my doctor, and have helped me so much, and if I were able to see you in your practice, I would have shown you a photo or you'd have met him. Also a photo of my ankle/foot at end of night, because I'm crazy and always looking for signs of swelling.

Thank you so much for all your help. As I nervously await my medical clearance, I thank you for allowing me to get through most of my days with less anxiety than I had previously.

THank you so much,
xxx

Oh and one last thing, I'm sorry- is there any theory as to why the stripe is significant and why it develops? Is it there before the heart problem? In my case, my doctors took it very seriously and after it was discovered on MRI, I was downgraded significantly and told I would need a transplant within months or I would not make it for very long. Could it be the sign of anything else I need to watch out for?

Many many thanks, again, as always.