4 Years

Four years ago today I woke up in the afternoon knowing that I was on a ventilator. I can't tell you that I remember being put on a ventilator, but I do remember waking up knowing that a machine was indeed breathing for me. Contrary to what you might think I was reasonably calm about this idea. I had a million and one questions and that tube definitely got in the way. So, instead of waiting for the tube to be taken out, I began to write. Somewhere in my "stuff" I still have those yellow sheets of paper to remind me of where I came from when I need reminding. And truthfully every once and awhile I forget how fortunate and blessed I am.

When I woke up that day I had no idea how long I had been "sleeping" and how much had changed. There were answers to questions I hadn't even known I needed to ask. So many tests were done while I was unaware and the results would change me and my future. I think the first question I asked a doctor was about having more children. Why I asked that when I had a newborn at home I couldn't tell you, but I did. And I got the answer I had no desire to hear. That OB's advice was absolutely never again. Another OB suggested that I could talk to a high risk OB about it after some time and then it would be all about odds. Of course the odds would never again likely to be in my favor. This idea was one of the hardest I have ever had to deal with in my now 31 years. The girl who dreamed of having between four and six children would have to stop at one?!? NEVER. Until recently anyways.

I wouldn't say that I wouldn't welcome another child in my life as a son or daughter, but I am guessing it won't be me delivering said child. And while that reality just about cripples a part of me, the thought of dying or permanently losing heart function is daunting. I don't believe that I can take that risk for the sake of the two people in this family that do depend on me today. My son needs a mother and today someone said to me, "One child with a mother is great, two children without a mother is horrible." That could be what I leave Tim with if I decide that having more children is that important to me. So, I could choose to knowingly risk everything I have for more and then I might never get to experience it or have to experience it in an incredibly debilitated state.

Peripartum cardiomyopathy is heart-wrenching. Well, not literally. It more accurately makes one's heart fail. While I was on the ventilator it was determined that I have a rare heart disorder/disease that can basically be considered pregnancy-induced heart failure. At some point I was told that less than 1/4 of 1% of the female population is diagnosed with this type of heart disease. I have never met anyone who has this issue and it is likely that I may never physically meet face to face with another woman who has been diagnosed unless I actively seek her out. I have heard of someone my Mom knows having a daughter with it, but that's as close as I have come to knowing someone else who deals with this reality.

From the outside today no one would know that I barely skated through things four years ago. I am positive a few years disappeared from some people's lives when this happened in that week four years ago. I cannot think of something a whole lot more stressful to be told than someone you love is on life support for heart and respiratory failure. I know one friend who found out while at work and another who called me in my room and was connected with my Mom in the ICU. A third found out from her mother. My poor brother and sister were each on different sides of the country and my husband was at home with our newborn son.

I remember my Mom being there and trying to comfort me as she told me that if I couldn't leave the oxygen mask alone then they would have to restrain me. I was screaming and combative because my oxygen saturation was in the low 70's and I was choking. And for the first time in my life I understood that I could die. I had no idea what was happening to me, but I did understand that it was serious when a team wheels you quickly into the ICU and a new team shows up immediately. I remember being asked if I had ever been on a ventilator for my asthma and I shouted a resounding, "NO"! And then things went dark. I am told by my Mom that everything happened quite quickly and that she wasn't there as she was asked to leave the room to give them space for intubation.

For many months I decided that it was the sepsis that caused my heart failure, not my pregnancy. I could not face the idea that another pregnancy would never happen for me, or at least should never happen again. I hardly had a chance to enjoy my son before this all came to a head and now I would never get to take another newborn home from the hospital?!? The head of the heart transplant and failure group at Loyola University Medical center tried to tell me when Matt was just shy of one years-old that it was the pregnancy, not the sepsis. He told me that the labs actually suggested long term heart failure, so for the second half of my pregnancy when the swelling was outrageous and I got worn out so easily, I was dealing with the heart failure then. Although he told me then that we would just focus on protecting my heart and getting healthier and that we could talk about pregnancy later, I now know that he never wanted to talk to about a future pregnancy. No doctor in their right mind would be in favor of me taking a chance. I think they believe it's like playing a little game of Russian Roulette.

So, today I look at things a little differently and maybe it's with a touch more reality than ever before in my life. Today I could not in any way take a chance at death or at a significantly diminished life for additional children. My odds for that outcome are too overwhelming. And frankly, it terrifies me. Because of all of this, lots of things are terrifying and overwhelming. It can be a secret hell because while I may no longer be incredibly weak and ill, my memory is sharp. Some days when my breathing is compromised due to allergies and asthma, I have to try to remind myself that I am not dying like I was four years ago. Now I am just learning how to live with the damage that all of this caused in my figurative heart (and mind) vs. my physical heart.

I feel like today is almost as special as my birthday because it was my day to be born again and feel like new life was possible. It was and continues to be a day on which I need to remember that I am so incredibly blessed and loved. I just hope since this appears to be the year when I become more and more in touch with reality that I work harder at building the life I was given a second chance to live.

Feeling sick...

So I am up in the middle of the night worrying. I know that I am not alone and that there is someone else doing the same thing somewhere in the great big ol' world. However, there is not much I can seem to do to comfort myself. It has been a rough day and I don't really know how to even express myself. So, I will do the best I can to explain my frustration and worry.

I went to my doctor's office to have a follow-up visit earlier this morning. Funny enough I thought I had this one all figured out and low and behold it couldn't have been further from the truth. My heart is aching and truly pounding. My anxiety level is pretty high and I would be lying if I said I see this as getting better quickly. I might have made a BIG mistake this evening causing and intensifying the feelings I am overwhelmed with right now. I know better than to look up medical issues on the internet and yet I just told myself I would just check one thing on my labs that my doctor didn't mention for some odd reason. I was curious what it meant. Should have stayed away like I promised myself I would do.

All I did was seriously cause myself serious stress and anxiety. As I read those letters that made up the words I could have passed out. For as long as I can remember I have rejoiced in the possibilities, earning lots of money, buying my first house, my future with a family, etc. I knew that the possibilities were endless. What I didn't always count on was life and how my choices played into that scenario. Now this may start to look like a personal bashing or a pity party. However, I would say I just really recently starting taking some responsibility for my actions, short term and long term. I have always thought that you could just get back on track and fix everything pretty easily. There were no real hurdles that one couldn't get past. In otherwords I thought that if I took my medicine as directed which I have struggled with for many, and I mean many years, then everything would be righted again. I would lose weight, save money, and be healthy (and much thinner).

Now I would say I knew I was never going to be a supermodel, but I didn't realize the hole I began digging for myself. A hole that could become a early grave. Sounds ridiculous I suppose but at the weight I am with the heart history I have and the recent discoveries of my lab results, I should be thankful I am still kicking. There are no words to explain the onslaught of anxiety this doctor's visit has caused me. I have been feeling like the world as I know it is changing before my very eyes. I want to strike and not go to the specialists and the pharmacist. The medical insurance industry winces and cries when they see my name on their current enrollment list. I am the person who utilizes the full benefits of my insurance coverage.

This year alone I have had two nuclear tests, one echo cardiogram, numerous blood tests, almost endless antibiotics, specialist visits, surgeon consults, one sinus surgery, one CT scan, one upper endoscopy, and close to weekly visits to my internist. Seriously, who knows all of the names of the people in their doctor's office?!?!? Oh and did I mention I have had at least two visits of my own to the ER? Probably not.

It's July. All of this happened over the last six months. And because of this I am the walking wounded. I am shaky and incredibly edgy. Now what everyone should be aware of is that everything that I was told this morning can be handled and my doc is great so I have a great deal of confidence in her. As four of my close family members have pointed out so kindly is that all of these issues are highly treatable. I have scripts for each issue and some basic instructions and additional testing I need to do before I see my beloved internist again. Having said that I am freaked out. I don't know too many 31 year-olds who have been through some of this crap. Right now I am on medicine to relieve my acid reflux, protect my heart muscle, relieve allergy symptoms (3 different ones), and an antibiotic to annihilate my sinus infection that refuses to pay rent. Plus I recently started a multi vitamin in an effort to do something in addition to give my body some little advantage. Now in my past life I have super sucked at taking medicine and anyone who has known me for awhile, knows that I try and then I get forgetful, and I mean REALLY forgetful.

I decided I felt fine awhile back and quit making any attempts to take my heart medication because that's what denial has done to me. With the mystery illness that I have had for the better part of this past year I suddenly scared myself into taking them. Now most would say that fear as a motivator is a poor choice. I just figured that fear was what was going to get me on the train and will power and dedication would keep me on. So here I am three (or four) months later and indeed I have been very faithful with few exceptions. Because like I said earlier taking my medication would automatically allow me to pass go and collect $200, or at least that's how my mind was working all of this time. I started religiously brushing my teeth (like my orthodontist would adore) because I found out that oral hygiene was very connected to heart health.

I also recently began eating far more organic food to try and rid my bodies of any crazy chemicals from pesticides. In addition to eating differently I made an action plan about my weight with regards to working out. I am holding myself accountable by paying a load of money for a personal trainer. I hate throwing away money, so I would need a really good reason to miss those appts. And part of the agreement with the trainer is to work out on my own so she will be checking in. Right now I would be seriously embarrassed in the first week if I already failed my early assignments.

BTW - Did I mention that I am also the person that thinks that everything can be reversed and worked with given some time? That translates into me saying I can fix everything that is wrong very quickly and easily. I just recently got the memo that changing really takes ALOT of work and dedication. I actually have to give up my comforts and seek out a new lifestyle. Sounds almost like fun, and I bet that parts of it will be. But what I also am learning is that life with medical issues is not all that it cracked up to be. It can be scary and unpredictable and unnerving. This whole thing makes me feel weak and somehow in all of it I know that I am strong. Whatever, and I mean whatever, the results from these latest tests have told me, the one thing that paperwork didn't mention was my will. I will not be beaten down for long...I am forever optimistic. It may take me a week or two to really wrap my brain around how I am feeling as I know the shock is wearing off now.

And funny enough I will be trying my best to not use the internet as a tool containing information regarding these tests and results. Why do I have a doctor if I think I can diagnose myself? It's like what I wrote in a previous post regarding my son, why would I sign him up for tumbling if I actually thought he could pull off a somersault??? What a waste of money that would have been. So clearly my insurance and my out-of-pocket money are buying something at this doc's office (and I don't mean her car or house). I am supposed to depend on her to lead me through these health issues as well as her staff. So tomorrow (or rather later today) I will be calling the nurse to ask her some additional questions so I don't drive myself crazier than I already am. I am hoping I don't come off as a crazed, anxious patient who is worrying unnecessarily. I want to know that there is some level of understanding on the other side of the telephone, which I am pretty sure there will be.

So in the meantime I will be visiting a nearby pharmacy tomorrow and seek out the three new medications I have to start and learn how to live with it. There are some interesting directions with the meds this time, so it will take some planning which has not been my strong suit in recent years. However, this has to be different. The entire issue has to be handled differently than I have done so in the past. It has to actually be taken care of and figured out and not stuffed in the back of the cabinet or closet waiting to be seen and heard. I will be taking this medicine and I will start loving it. Because these new meds just actually give me a new lease on life.

So now my eyes are tired enough that I am going to attempt to sleep. I hope there is some mercy tonight and I can just fall asleep quickly. Please God, pretty please with a cherry on top!!!

So, I might have gotten lost along the way...

Ok, I have not perished or entered into the witness protection plan. However, I might have gotten a little lost along the way over the last several months. I have a couple of friends, let's just call them Lee and Cali, who have been very supportive about my blogging. I on the other hand have been lazy and have struggled with this notion. So much happens and I never seem to find the time to write about it or the will to tell a crazy tale. Theoretically I am supposed to be journaling to relieve my anxiety, so I would assume this could take its place (to some degree).

Tonight I had an anxiety attack and I really didn't appreciate it at all. For the record, they are not welcome visitors in any way...until now. Tonight I thought I was going to lose it and we would have to go to the ER for me to be sedated. And here I am, writing and doing alright. One could almost say that I had a breakthrough. I was watching a movie which I surmised to be a comedy and perhaps I should start reading the movie info before I decide what kind of movie it might be in the future. Everything's Fine is by no means a comedy unless the ending, which I did not watch, becomes funny. It is all about death, surviving the loss of a loved one, lying, and serious health issues.

The last item mentioned would be the most important for me (as well as the first). I am terrified (and I mean truly terrified in the seizing up way) of being somewhere and not being able to receive appropriate medical care for breathing or heart issues. Now I can't say that I haven't been able to get proper care as I have always been in the right place at the right time for everything. I feel like I am definitely reliving the nightmare after having Matt over and over again and I got wonderful care so promptly at that time.

I keep having that gut seizing fear that my breathing is going to be seriously compromised and my heart is going to fail and I will be out of luck. I will never be able to truly explain how I felt in those moments when my breathing was so labored and I was choking, while watching the oxygen saturation numbers go down into the low 70's without a clue as to the why. I know that I became combative (normal when O2 sat is that low) and was being introduced to the respiratory team in the ICU. That is the last thing I remember other than my Mom trying desperately to calm me and convince me to leave the O2 mask on or they would have to restrain me. It was almost comical to me that the nurse mentioned (while they rolled me in at neck-breaking speed) that they would have to put me in a room with a male and they hoped I would understand. I can honestly say at that moment the ONLY thing I was thinking about was my breathing and choking. It wasn't like we were going to be roomies and chat over magazines.

I woke up with a sense that things were drastically different then when I "went to sleep." My Mom was sitting right next to my bed and I knew that I was on a ventilator when I awoke. I was confused for obvious reasons and I had some serious catching up to do. I had a million and one questions to ask and no way to ask them. Someone kindly offered me some paper and a pen to start the process. I think the OB came first and I asked her what happened and could I have more children. Now why in God's name that would come up so quickly in my mind, I have not a clue in the world. I don't completely remember everything I wrote about or asked, however that answer is forever imprinted on my heart and soul. "No, you should never have another child again. It could kill you."

Now, frankly let's just say I have spent the first three years of my son's life in complete denial. I took precautions to not become pregnant, which was extremely painful because I wanted 4-6 kids with M just being my first. I refused to believe that my pregnancy caused the heart failure. Instead I decided with my multitude of medical knowledge that my sepsis clearly caused my heart and respiratory failure. Now to be honest I hadn't mentioned it until now because now I know, courtesy of an incredible cardiologist at Loyola that pregnancy is the real reason my heart failed. My heart was failing through the second half of my pregnancy. Devastating news in my world given to me almost a year after M was born. Now if you look up peripartum cardiomyopathy you will find support sites and research (although very little). What I chose to focus on were the sites that women went on and told their stories, mostly how they survived and went on to have more children.

So, last year when I got pregnant twice over (very much unplanned and unexpected) in the end I was going to be ok (thrilled) with it. After my second miscarriage I told my husband that I was not willing to go through that again, esp since that news came about after a dramatic hospitalization. The shock, the peace, the build-up and anticipation, the worry, the fear, then the horrible news, and lastly the incredible pain (physical and emotional) of going through a miscarriage was too much to keep doing. I needed to reassess. I still in my heart want children more than almost anything, although right now I am willing to focus on saving for a house and a new car, and gaining my health back one step at a time.

I am not sure the yearning to have more children will pass, however for now it is off the table. With the anxiety surrounding health issues I might very well be out of commission if I were to become pregnant. For the first time in my life (including the last 3.5 years) I am scared (um, probably trembling and terrified) of pregnancy. I am so incredibly envious of people who have had typical deliveries and no issues later. Though not for a second have I ever regretted having my son even if the experience almost killed me. His life is the greatest blessing in my life outside of my husband and my family, which as far as I am concerned includes many friends too.

I just wish for a time where I can be healthy and content, have a chance to build up my immune system and start on the next leg of my journey. For now and for the rest of my life I have to start thinking about being here and healthy for T & M as well as myself. I found out after being sick for months that I have a rather dysfunctional gallbladder, which adds to my list of issues, and crazy sinuses to boot. After having sinus surgery the day after my birthday last month I am honestly going to say there better be a pay-off for that experience. For weeks my face felt like it was hit by a baseball bat and I still don't have all of my senses of smell and taste back (5.5 weeks). SO ANNOYING! I can't wait to be out of high allergy season!! I am tired of being that girl, the one who is always sick and has a million health issues.

I have so many aspirations right now...I guess let's just go along for the ride and see where life takes me. :)

Next entry will hopefully be a short catch up on the past months and some goals for the next several months...