April 26: Was I really dying, or just being dramatic?

Over the past few months some people have expressed doubt that I was truly dying. There is an implication that while certainly sick, I was perhaps not actually dying. I don't know how you can hear that someone has had three open heart surgeries in less than three years and not realize they must have been dying. But, in all fairness, considering how incredibly healthy I've looked since the last surgery, it's (sort of) understandable. Certainly my story-telling can be dramatic, but anyone who has been around me for any amount of time knows that I've never needed to exaggerate regarding anything, professionally or personally. My life always HAS been that dramatic. But since this is a venue for my feelings as well as hoping to educate others, it makes sense to address it on the blog, along with some things that might be surprising/informative.

Going into heart failure in February 2004 is what lead to the diagnosis of congenital heart disease. It was treated with oral medications and things went back to what my normal had been. But then in July the ankle (same one) was badly sprained which lead to using crutches, causing my heart race. The ankle healed and the crutches were no longer needed, but in trying to resume activities it became obvious that the shortness of breath was much worse than before. By the beginning of August even small tasks made my breathing labored, the exhaustion from daily life was unbelievable, feeling horrible all the time. I knew what the next echo would show, knew it would mean heart surgery.

Taking a couple weeks to mentally prepare for that allowed me to be absolutely calm when it was done. I asked my boss (and, therefore, cardiologist) RL to confirm what was I already diagnosed on the echo myself, already knew. He was stunned, alternating between staring at me and then the screen, in total disbelief. It was absolutely horrible--this massive anterior leaflet of the mitral valve, the huge amount of blood regurgitating backwards. With each beat of my heart, more than 50% of the blood was going the wrong direction: back into my lungs, causing a severe increase in lung pressure while not enough blood moving forward to keep my blood pressure up.

While this let my bosses know the situation, it needed to be officially diagnosed by the cardiologists at Presbyterian, the hospital where the surgeon practiced. Before the stress echo on September 3, my comment to the M.A.s in the office was the wish that I would fail spectacularly because continuing to try and function was impossible anymore. After the test, the cardiologist confirmed that my heart failure was nearly critical, the lungs struggling to compensate for the backward flow of blood. It was so bad that the surgery was scheduled before leaving from the test: October 15. My cardiac cath and TEE were Sept 17th, but since it wasn't with exercise they didn't realize the full extent of the problem. Every week I felt worse, and I knew that I was dying. It wasn't exaggeration, it wasn't being hysterical, it was just something of complete certainty. Soon after, ME looked at me struggling up stairs in the hospital and said "You aren't going to make it to October 15 th. You'll never last until then." It didn't upset me, it was more of an affirmation than anything.

My appointment with the cardiologist, which was to have been my 'routine' six month follow-up, was October 4th. Since the surgery was now only 11 days away, it also served as the day for pre-admission tests and the first meeting with the heart surgeon.

The surgeon's appointment was the last appointment of the day. He told me that my echo and TEE (the one with more detail where they put the probe down the throat) had showed an abnormality that no one else seemed to have recognized. It was a more complex issue with the valve leaflets themselves, and meant that they were going to rupture open--soon. Rupturing open meant death, because it causes pulmonary edema, overwhelming the lungs with blood and fluid. It isn't predictable, could be the next hour, next day, next week, next month. He told me that as soon as this particular type of abnormality is discovered the patient should immediately go into surgery. But, he continued, since I was already in such severe heart failure and my lungs had gotten used to it (sort of) there would be several hours after the rupture happened, giving time to be transported to Presbyterian for emergency surgery. So, we decided to stick with the scheduled date, because everything was already arranged.

"How long do I have without the surgery?' I asked. He hedged.  I pushed.  I wanted to hear it, said out loud, by an expert. He looked down, couldn't meet my eyes, before replying "You probably have less than two months." I responded "So, we hope it doesn't rupture before October 15th or I'll see you sooner."

There was a strange comfort in knowing that, even to myself, I hadn't been exaggerating, hadn't been theatrical, wasn't being hysterical. It was something deep in my core: I knew I was dying. It was a quiet knowledge without question.

But, surprisingly, I didn't tell anyone what the surgeon said. Not until weeks, even months, after the surgery. Why? A lot of reasons.

People's reactions to the news that you are seriously ill can be bizarre. They want lots of details, ask lots of questions, often refuse to believe the severity. There were many times they even needed me to comfort them. If you talk to other patients you will hear this as well. No one wanted to accept how ill I was, that I was dying. I was going to have surgery and everything was going to be fine. Repeating the facts over and over is depressing and, when you can't breath, frankly exhausting. Not trying to explain and convince people of the hard truth was easier on me. Why deal with the hassle, other's disbelief, the cascade of emotions and fear? The "I told you so!" dance wouldn't be possible if I died during surgery. Not telling anyone was self-protective, on many different levels. And, for me, dying was an intensely personal issue, causing the 'inward turning' that I've mentioned at other times.

So, is that enough to say that I was really dying? Because from the time of confirmation by the surgeon, it was only 11 days until my heart would be fixed. Although I had known that things were worsening by the week, if not the day, and had been dealing with it since August.

But wait, there's more....

So, the horror that was the first surgery is over, months go by, and I'm still feeling wretched. The new cardiologist and the surgeon at Presbyterian are very dismissive of my continuing to complain of difficulty breathing and severe fatigue. They actually say in letters to ME "We don't believe that Laura's symptoms have anything to do with her heart...." Yup, it's in writing, multiple times.

And then Dr. Cohn of Harvard/Brigham Hospital came to lecture at Bryn Mawr, and immediately believed me when I spoke to him about my case. After looking at all the tests and reports from Presbyterian (which took MONTHS to get out of them) he called and told me to get to Boston ASAP. March 10, 2006, and they are putting me through the works: stress echo, TEE and a cardiac catheterization with exercise using a bicycle during the cath. The news is grim: the worst pressure increase the cath doc has ever seen. The measurement of the pressure in my lungs, called a pulmonary wedge pressure, is a little high at rest (13, with normal being 8-12), they aren't supposed to go up much with exertion, even with significant mitral valve disease. Maybe 14-15. Mine went to 34. I remember lying there crying, just saying over and over "No one would believe me. I knew something was wrong, but no one would believe me." Dr. Cohn announced a couple hours later: "Congratulations! You have functionally critical severe mitral stenosis!"

And then, the diagnosis was wrong, and the surgery in May was cancelled while everyone scrambled to figure out the problem. (RL, by the way, gets the credit for figuring out that the diagnosis was wrong) It was something rare and even worse than Dr. Cohn's initial pronouncement. That lead to my seeing Dr. Baughman, who informed me that I was critically ill and at risk for dying suddenly--like, any second suddenly. Without having known, I'd been deteriorating ever since the first surgery, with an abnormality waiting to kill me at any moment. It had been in my mind, but I'd talked myself out of it. Death had been hovering without my being certain, but now I was acutely aware of his presence.

Again, I downplayed it. Cousin/Aunt Beth's 50th wedding anniversary was already scheduled at the family vacation, she wouldn't be available until July. Dr. Cohn wasn't available until August. My thought process was that having lasted 20 months without knowing, I could certainly last another couple months being careful. So, again, I said very little, just stayed vague. The week of the family vacation there are almost no pictures of me--deliberately on my part. But in one lone picture it's obvious. It's a picture of my cousins and me on the couch--I'm hugely swollen with fluid and a color somewhere south of paste. Meanwhile, Dr. B was having fits about my not being in surgery already.

After the second surgery, Dr. Cohn admitted that my heart was much worse than he had expected, and also told me that this repair would probably not last my whole life, hopefully 10-15 years. Then the horrid thoracotomy with a difficult recovery. I just felt worse and worse, again gasping for air with minimal exertion. My local cardiologist told me there was no choice but a third surgery, although I convinced myself he was wrong. Then Dr. B told me on February 28th of 2007. Again, he wanted me in surgery immediately. But by that time I was in severe financial peril, was selling the house and renovating this one. Loss of my house would have been inevitable without taking the time to move. Dr. Cohn recognized this would affect me adversely going into another critical surgery.

My friend, and last EMS partner, Joanne came with me for the TEE and cardiac cath done in May. Again, things were much worse than they had expected. Now my wedge at rest was almost 40, going to 70 with just moving my arms with a little weight. My heart and lungs were struggling, failing more with every day. Dr. B came to talk to me in the recovery room. I'd told him that before going through a third surgery things needed to be black and white, unquestionably no other alternative. I had told Joanne what the only choice was, but she hadn't wanted to believe me. So, she asked him the question: What if the third surgery doesn't work? He hesitated, then said "The only treatment left would be a heart transplant." Even knowing the answer it was still horrific hearing it from the authority standing next to me in the white coat. It's something that you never think will be said to you, beyond any nightmare or imagining. The confirmation that, once again, I was dying.

Below is one of my journal entries in spring, 2007, which was the darkest, most horrible period of my life.

Everyone thinks they understand, thinks they know what it is like. But you don’t. Not until you live it. Not until you wonder, every hour of every day, how you are going to support yourself. Not until every day contains pain, the only issue is how much. Not until you wonder how much longer before you become even more compromised and look back on this time as “better days”. Not until you know that you are dying, it’s just a matter of when. Not until you look at dates in the future and wonder if you will still be alive when a movie gets released or to make plans for next Christmas. Not until you have to develop a façade to convince people how well you are doing, mostly to avoid their pity, the rehashing of all the horrid details. Not until you have to force yourself to show any concern for the stupid, inconsequential crap that other people get caught up in. Not until you are always identified as “that poor young woman with the heart problem”. Not until you know that every day of every month of every year for the rest of your life you will never be free of coping with a chronic, debilitating, frightening medical condition. Not until you think daily about your wish for a quick release instead of the long, slow agonizing spiral downwards that will leave you dependent on others, getting supported by the government, losing your dignity as you lose all your independence. No one else can understand it until you are living with it. Not until your identity is so wrapped up in your condition that even you are no longer sure where the disease stops and you as a person begin.

So, for the record, yes, I was dying. Technically, from August 2004 until July 2007. Three years doesn't seem like much, in retrospect. But you don't know that there will be a retrospect. That's the issue--I didn't know I was going to get better. Because after all the problems, the misdiagnosis, the repeated let-downs after critical surgeries and still struggling to breath, it was impossible to convince myself that 'the third time was the charm'. It's all starting to seem more and more like a nightmare now, but at the time it was reality. Every second of every hour of every day for three years. Not knowing what would happen. The specter of Death at any moment.

Only now, with time, is it possible to go back, try to understand what was going on in my head. To try and counsel others, let them know what to expect, tell them they aren't the only ones who feel these bizarre feelings. Because if I can help someone else, even if it is to help them die, then it gives purpose to what I went through. And, selfishly, that's what I need in order to try and make some sense of the whole horrible experience.

Hope this provided insights: to me, someone in your life, or even you. Laurie

April 25: Foot & Martha update, rescheduling

So glad to know that Deneen is still reading this and OK--I was starting to get worried about you, Deneen! There are so few comments left, although I know there are a few people who read this but just don't leave a comment. More people leaving evidence of their visits would be nice--hint, hint!

The foot is doing a little better. Staying home for that week and resting it was definitely the right thing to do, and I got a lot of paperwork done as well as finally getting some stuff started in the writing department, although it's up for debate where that ends up going. Friday and yesterday I did a lot of stuff around the house, went back and forth to the garage three times yesterday, which is the first time since I broke it. Up and down the stairs to the basement--gingerly--a few times as well. So it hurts some now. It's nine weeks today, and it's a little discouraging that it's still so painful so often. Still wearing the boot, and I notice a difference if I try to walk on it without that support, even just a little around the house. Several people have said that their experience with foot injuries is similar, they just take so long to get better. But it does cross my mind that maybe there is more going on than is obvious because, let's face it, it is me we are talking about. It's still clearly swollen, which strikes me as strange after all this time and makes me wonder about more tendon and ligament damage. Appointment with ortho is next Tuesday.

My INR has been within range now, waiting for the results of Friday's draw.

Last weekend I went to NY to see John, Martha, Lyle & Emma. They are all in different phases of shock, which is to be expected. I'm actually waiting to hear from John right now about the bronchoscopy that she had done yesterday at Sloan-Kettering. The surgeon that they found seems perfect (although that's the purpose of those staff biographies!), and has special interest in doing surgeries the least invasive way possible, which works particularly well since my thoracotomy was the one Martha was there witnessing for several days. He's also interested in non-smokers with cancer, which also applies. His other good points are doing procedures on Saturdays and actually LIKING to get phone calls from his patients with questions. There are two other results back: the PET scan, which looks for increased activity indicating spread of the cancer and the brain MRI, because this type of cancer likes to metastasize (spread) there. The excellent news is that both tests were negative, and I was impressed at how quickly they got back to them with the results. The results of the washings from the lungs taken today will take another day or two to come back, and then she has her first appointment with the oncologist, again at Sloan-Kettering, on Wednesday. Expecting chemo, possible radiation, before any surgery, but we'll see what the expert says.

While the first of the two weeks scheduled off had to be taken as vacation, the schedule worked out so that I could work my usual days last week, so they didn't have to wasted. Now, of course, we are back to normal. This sudden hot weather is an unpleasant surprise for me, because my breathing is always worse when it's hot. No humidity was nice, however. I called my lawn guy and he is coming over Tuesday to take out storm windows, put in screens and air conditioners.

Many people have wanted to know about rescheduleing the trip. Susan and her kids are coming to the US this summer, we'll be together in New Hampshire at the camp I've referred to frequently. So it doesn't make sense to go over in the summer when we'll already be seeing each other. Then we get into the school year, Christmas time is hectic for everyone, so the next time frame that is good for her is next spring/Easter break. As you regular readers are aware, this trip was more than a vacation. It was trying to resume an activity that I enjoy immensely, that my illness prevented. In the battle for my life over the last five years, the concentration has been staying alive. The 'living' part hasn't been a lot of fun. This was my first real attempt to experience the fun part of having fought to stay alive. So, despite the family vacation in July, I really don't want to wait another full year. My current plan is to go to just England in October, maybe for a little longer than a week depending on how the schedule works out. That way I'd have England to look forward to and plan for in the next six months, then Italy would be about six months or so after that. So that's my thoughts, although I'm going to wait to be sure that the foot is, in fact, improving and isn't going to need something wretched done to it.

-----Just got a phone call from Martha, sounding a little scratchy. They did a bronchoscopy and also minor surgery on her mediastinal area (breastbone) to get samples of the lymph nodes. While they won't know the actual cell pathology until the appointment on Wednesday, the surgeon was very pleased with how things looked--very clean. She got a higher staging number because of the size of the tumor, but so far there doesn't appear to be spread anywhere. So the next news will be after Wednesday's appointment.

I'm going to do a separate cover for the philosophical part, just to keep referencing easier.

Thanks for checking, Laurie

April 16: good news, good news....really bad news

The foot doesn't seem to be a whole lot better. Maybe a little less swollen? I gimped around on it just in the house today, probably should have put the boot on. I spent some time sitting on the swing with my legs in the sun, trying to get some of that bone-strengthening vitamin D conversion going!

Good news: I've been terrifically productive and have gotten a lot of writing done. And I feel very creative, in the literary sense. Obviously I've talked about (and have been urged to) write a book, and I'm starting to get more things on paper. I haven't felt particularly social, so this has been a good outlet. And also keeps me from putting too much strain on the foot.

Good news: The gluten issue had been solved!!!! My friend Bidge's daughter, Julie, who I used to babysit (of course, she's about 40 now and I'm, ahem, older so....) is a specialist in herbs. As I think I've mentioned, the gluten allergy is actually an enzyme deficiency, probably genetic. Apparently those of us from the British Isles didn't have to process gluten--not a lot of waving fields of grain in such a small geographic area, which is why it was potatoes. Anyway, she's put me on an enzyme and I'm eating gluten! I started off slow (donut holes) and then advanced to a cheese steak and onion rings (God, how I missed those!) and yesterday upgraded all the way to pasta--YEAH!!! So, I swallow two capsules before eating anything and, presto, a wheat eating I go. Life just got so much easier.

Bad news: Cousin John's wife, Martha, the ones who live in NY. If you look back around the cardiac surgeries she posted. She came up for a few days to keep Mom company for the thoracotomy. Martha called me last week from her hospital bed. She didn't want to worry me before the trip, but she'd been getting treated for several weeks for an atypical pneumonia. 50 years old, non-smoker; I was pretty sure it was a fungal infection. I spent over an hour on the phone convincing her it was time to transfer to a NYC hospital. It didn't take as long to convince John. We co-ordinated the next morning, exchanged collected info. Then the biopsy results came back: lung cancer. Totally floored me. Really, really didn't see that coming. Martha lives the healthiest lifestyle of anyone I know: exercises, yoga, cooks from scratch, buys most stuff at the farmer's market (which she ran for a few years as well), no family history. Work-up is still in progress, but it's a big tumor: almost 3" x 3" x 2.5". I'm going up tomorrow (well, today now) and will come back Sunday. We'll see from there.

See, when I was still a paramedic, God could throw all the crap at me in horrific calls. Now, it has to be closer to home. Although, honestly, I don't believe that. I don't think that God is up there like a master puppeteer jerking us all around. I think bad things just happen. And how you chose to deal with them is up to you. And that will be the subject of my next philosophical posting, which I'm already working on in my head and my diary.

Please keep Martha in your thoughts and prayers. Thanks for checking, Laurie

April 13: Disappointment

Well, you probably saw it coming. I didn't go on my trip. I made the decision Thursday night, very late, but the process had been ongoing.

The foot is now seven weeks out from having been broken and it's not nearly as far along as I think it should be. The orthopedic doctor said it would take 8-12 weeks, and "maybe I would get lucky and it would be the shorter period of time". I laughed and, inbetween guffaws, informed the nice doctor who has never treated me before that my body is not known for following the easy path. He conceeded that with my bones seeming to be as thin as they are that 10-12 weeks would seem to be more realistic. And he did not want me to take this trip, he was concerned that it would be too much stress with increased walking over rough terrain and cobblestones.

Having the blood go whacky on the coumadin was a factor. Even last night the level was still too thick. "Normal" people have developed clots in their legs on long flights, and that risk is substantially increased if you have a leg cast on. So, the broken foot became an even more dangerous issue.

Please spare me the happy, perky bunnyland crap. Yes, I can and will go another time. Yes, Italy will still be there. But this trip was so much more than just a neat vacation. It was to try to resume a measure of normalcy beyond my day-to-day life. International travel is my favorite thing to do; and this was one of my two big goals.

I couldn't even post Friday because I was just too depressed. I brushed my teeth in the morning, that was the only thing productive I did all day. I laid around in my pjs, ate all sorts of major calories and bad things, watched TV and read, although there were several phone calls in there to doctors offices, travel agent, trip insurance, etc. And finished off a bottle of wine before going to bed at 2 am. Saturday I figured it would be better to get out of the house and be around people. Fortunately, there was stuff going on at my Fellowship, so I went there, had dinner with Kim & Rick and then went back to Fellowship for several hours of companionship.

Susan and her daughter Emily are still going to go to Lake Como, and have promised pictures and postcards. Emily, who is 12, was at first resistent to going with just her Mom, because that isn't cool. She said it wouldn't be as much fun without me, which I found intensely flattering since I don't think of myself as that much fun--yeah, I'm cool to a pre-teen! I will see them both, along with Susan's son Mirko, in late July when we meet up at the camp we try to stay at every year. We didn't go last year, so I'm glad it worked out for this year, although not all my cousins will be able to be there.

So, I'm making other plans. I'll go into work next week, I think. More later on the rest of things going on......

Thanks for checking in, Laurie

April 9: 26 hours!

Apologies, as usual, for not posting sooner. I'm not sure why I didn't last weekend. And now I'm jammed for time. I'm supposed to leave tomorrow, would leave the house in less than 24 hours! I'm so excited, but kind of concerned. The foot hurts every day, and there's a reason for that....

I got my bone scan results back, and let's just say it isn't good. There are multiple stress fractures in the left foot. He can't be more specific than that because it just measures increased uptake, indicating cellular activity, in the area. Stress fractures are internal fractures in the bone that don't go through the surface--picture crackle glass. Without an MRI there is no way to tell the number or severity of the stress fractures. (Did I mention that no MRI because you don't put a person with their chest full of metal around a super strong magnet?) He doesn't want me to go on the trip.

Additionally (because it's me, so there has to be more!) he thinks the foot is so bad because I have fairly advanced osteopenia--thin bones, they pre-stage to osteoporosis. This would be bad in someone my age, especially being pre-menopausal. Why do I have this? Well, obvious reasons are family history and steroids for my asthma. I've always taken in a lot calcium, taken supplements and recently increased my vitamin D. Is that all? Who knows. I made an appointment with my primary doctor and will get a DEXA scan when I get back to see for sure and then go for there.

And I have arthritis in both shoulders--thank you, 25 years in EMS. And my lower back--L-S Spine, is really bad. I've known for years that I had degenerative disc disease (DDD): I was kicked by a horse when I was about 10, started seeing a chiropractor at 15 years old. Also a family history and 25 years in EMS. I knew it was significant, apparently it's severe. He says I have no discs left between L4-L5 and L5-S1 and can't believe that I wasn't complaining of it. I replied that I was in pain, but it's all relative. I've been in pain for 30 years, some days worse than others. And, most of the time, the pain in my sternum is worse, although Saturday I was in so much pain I could barely get out of bed but didn't feel guilty about taking medications to control.

Tuesday brought an unpleasant surprise: panicked calls from my cardiologist telling me that my blood was critically thin and I had to go to the ER. My first response was "I don't have time for that!", but then my clinical side kicked in and I went (after eating and finding a book!) So their number was "greater than 10.0", they don't measure higher than that. So at major risk for bleeding from anywhere and/or a stroke. They gave me the antidote and allowed me to go home. Wednesday it was down to 1.5, which is critically low and put me at risk for a stroke (because of clots forming on the mechanical valve). Long story short, after battling with my insurance company again and ordering a portable monitor (to the tune of $2,500 out of pocket, but still better than a stroke), my boss agreed to let me take one from the office.

So, in pain and limping, with too thin or too thick blood, I'm supposed to leave tomorrow.....

So, my next post will either be from Italy or having canceled. I guess I have to decide soon, don't I?

Thanks for checking, Laurie