These are a couple weeks late, but on May 20th, our baby Torben turned ONE! I can't believe it has been a year already. And WHAT a year. I think back on this time last year and how crappy I felt, both emotionally and physically and how I thought it was all in my head. I just thought I wasn't bouncing back from the c-section and bedrest as fast as some people do. I guess I had assumed it was pretty much my lot in life to have a bit of difficulty with things that come easily to others. Now, in retrospect, knowing what was really going on with my body and my heart, I am amazed that I didn't feel worse. I hope to be able to have the opportunity to go back to East Carolina Women's Center and tell them what happened. I am curious if this has happened to anyone else in the area lately, or ever. I'd love to speak to the local hospitals as well. I think there are more women who are getting shoved into the PIH/pre-eclampsia category when there is more going on. When the doctors hear hoofbeats, they think of horses, and people like me are zebas. Hopefully ongoing research will make it easier to diagnose patients faster and get treatment started earlier. Now on to the good part!!
For Ben's actual birthday, which was on a Friday, I had just made him a 6 inch rainbow chip cake that he could smash and tear apart to his hearts desire.
His dad made him macaroni and cheese for dinner.
He got really messy with the cake! We let him get a little too messy because he wasn't too happy anymore once he got cake and frosting in his eyes and and nose. When we took him upstairs to get him all cleaned up he just started bawling. Fun overload! Poor thing, we assured him we would only torture him like that once a year!
The next day at noon we had a barbecue at Glenburnie Park. I had a few decorations in the form of table covers and streamers and then a banner that was supposed to go on his highchair, but ended up on the picnic shelter. No matter! The banner, cupcake decorations, favor stickers, and centerpiece I ordered from Sugar Sweet Party Boutique . They were so cute, I got lots of compliments and the designer was super easy to work with. I loved them. I used the blue and green theme they had to do other things for the party like the favor bags, streamers, table covers, and cupcake sprinkles.
He also had an adorable 1st Birthday onesie with a #1 and a turtle on it, but I stupidly didn't get any pictures of him wearing it. I ordered it from Maddie Bug Baby
and she did a FANTASTIC job. So cute. I am getting Ben's pictures done professionally next week, so I'll be sure to get a few of him in it.
I was so happy to see so many people come out to celebrate with us. It's very humbling to see your friends all in one spot and see how much they care about you, and Ben too!
When everyone gathered around and started singing "Happy Birthday" to Ben he just grinned and giggled! He was thrilled to have all the attention and singing directed his way!
All in all a GREAT birthday weekend for Ben.
Gosh, it seems like no matter what I do, I can't keep this thing current! It wasn't long after I made my last entry that I got called from the new cardiologist, she was scheduling me and appointment. I was relieved, but unfortunately there were no openings until April 6th, so I had to wait a-whole-nother month before meeting her.
She was great, I'm so glad to have gotten a second opinion. She asked me what exactly brought me to her and I tried to go through my medical history without things getting too muddled, but nothing is ever straight forward with me and this so I think she got a little confused a couple of times. She definitely agreed that "You'll be fine" is not an appropriate response, especially when the clinical data is indicating that's not the case! So first off, that made me feel validated and not just like a picky patient. Even though I know I have every right to complete and competent medical care, I still feel a little guilty sometimes for switching doctors. It's weird because I wouldn't have a single qualm counseling someone in my shoes to do exactly what I did. I make a much better nurse than patient! After she listened to my story the first thing she said was "Okay, you need to be on a medication called Carvedilol" and from then on out I knew I was in good hands. That was exactly what I was hoping to hear, I really wanted to get on the beta blocker since the combination of a beta blocker and an ACE-Inhibitor are the standard treatment for cardiomyopathies with symptoms of CHF. She also had an appropriate schedule for increasing my dose. I started at 3.125mg twice a day, and then doubled each dose after one week. She said that if I was having trouble with low blood pressure the first thing she would do is lower my dosage of Lisinopril so I could keep going as much as possible with the Carvedilol. Which is also exactly what I wanted to hear!
When I started taking the Carvedilol it was interesting because I definitely felt worse for a few days at first. More shortness of breath and some chest pain. I asked some of the ladies in the PPCM support group and several said they experienced the same thing any time they increased dosage. I moved up to 6.25mg pretty well, with the 3-day dip again. Feeling pretty fatigued most days, usually have had to take a nap when Ben does. I stayed on the 6.25mg dose for almost 3 weeks and by that time was feeling a little less fatigued than I did in the beginning.
Had a follow up with Dr. Park last week and we are doubling the dose again, from 6.25mg to 12.5mg. She wants me to double one dose at a time, the PM dose for one week, then start doubling the AM dose as well. She told me she wants me to stay at 12.5mg for a couple of months before she starts to "really get aggressive". She did indicate to me that it might not be much fun from here on out, but I know it's for the best. So far I don't feel too terrible just doubling the night dose. I didn't even have the same issues with the SOB and chest pain as I did last time, we'll see into next week when I have doubled both doses.
In other exciting news, my handsome, amazing, miracle baby is ONE! He's such a joy! We had a great time. On his birthday he had his own little cake to smash, which went on a little too long and wasn't very happy once he got frosting in his eyes, poor thing. Then when we tried to give him a bath and that made him more upset. Oops! We had a great time on Saturday at his birthday party which we had at a nearby park. There was lots of shade and a little breeze, so it was totally bearable. I was touched that so many people came out to celebrate with us!
Hope to update more often!
It's already been over a month since my last post and I was diagnosed with PPCM. I have been extremely fortunate to find a support group that is full of knowledge and encouraging words. I have learned so much about the disorder and how it should be treated.
The website is A Mother's Heart. There is lots of information on the web page, but the biggest wealth of knowledge is from the people living it on the message boards. Through this group I was also able to be in contact with Dr. James Fett, a cardiologist who is known for his research and publications about PPCM. He is an amazing person who reaches out to both doctors and patients involved with PPCM in the interest of spreading the word about the disease. He makes himself available to answer questions from people like me who have PPCM and also to their doctors for consultation free of charge. He is doing an incredibly service to the medical community in an area that gets overlooked often.
Through reading on A Mother's Heart and speaking with Dr. Fett, I now have answers to a lot of my questions.
I now know that PPCM is a form of dilated cardiomyopathy that manifests as heart failure, typically in the last month of pregnancy or somewhere in the first 5 months postpartum. Diagnosis can only be made when there is no other reason for heart failure present in the patient in conjunction with the pregnancy. It occurs in about 1 in every 1300 to 4000 live births in the US. It is marked by a decreased left ventricular function in the heart. For reasons that are still unknown and being researched, an inflammatory reaction causes damage to the heart muscle cells, and as a result the left ventricle does not contract (beat) as effectively as it should, decreasing the amount of blood (output) pumped out to the rest of the body.
Symptoms of PPCM are very similar to symptoms that are often experienced at the end of pregnancy for a lot of women, but usually go on to be more severe. They include swelling, shortness of breath when lying down or with activity, getting easily fatigued, persistent unexplained cough, rapid weight gain. After learning more about PPCM, I am able to recognize the symptoms of PPCM and heart failure that I had during the last couple of weeks of pregnancy and for a while after I had Ben. I minimized a lot of them because I had been on bedrest and I figured a lot of my difficulties were from being "out of shape". I even mentioned being extremely fatigued after taking a shower to my OB and he thought it was probably because my body was used to resting also. After having Ben I was recovering from the blood loss, the magnesium and the c-section so I wasn't sure how I should feel. I felt like my "healing" was taking longer than it was supposed to, but I figured I was just being impatient. For the following 8 months I also experienced symptoms of decreased cardiac function, but again, I tried to convince myself that I was imagining things.
Last time I talked about how my cardiologist didn't go over my echo results with me but that I thought they might not be that bad since he didn't add or change any medications or do any lab work. After speaking with Dr. Fett and the other ladies at A Mother's Heart, I realized how important my LVEF (left ventricular ejection fraction) value was in getting the best treatment. The cardiologist said that things should go back to normal on their own but cautioned me against strenuous activity. A normal LVEF is 60% or more, 55% is considered recovered from PPCM, since my cardiologist had such a positive outlook I was thinking I might be in the neighborhood of 45%. I requested my echo report and was pretty disappointed to see that my LVEF was only 35%, which is only a little bit over half the normal LVEF.
I realized that I needed to stop minimizing my symptoms (chest tightness, shortness of breath, heart palpitations and intermittent chest pains) because I was doing more harm than good to myself and my family by trying to act like everything is okay.
The standard treatment accepted by the American Heart Association for heart failure with decreased LVEF is two medications normally prescribed to lower blood pressure. One is called an ACE-Inhibitor which I am currently on for the high blood pressure that started back up in November, and the other is called a Beta Blocker, which also lowers blood pressure and protects against arrythmias that can sometimes arise in people with decreased heart function.
Dr. Fett says I am still within the window of opportunity to regain heart function, hopefully full heart function, but I do need to be on both of the medications.
I was pretty upset at the candid demeanor the cardiologist had, so I touched base with my PCM and requested a second opinion. I am in the process of that now. My referral went to the new cardiologist about 2 and a half weeks ago. I ran into problems when I called though, apparently there is only one doctor who treats this kind of heart problem and typically she likes to review the patients records before an appointment is made. I dropped my records off 2 weeks ago and I have yet to hear from them. I called last week and the receptionist said my records were still on the doctor's desk, she hasn't looked at them yet. It's getting incredibly discouraging because when I first called the practice, they were scheduling appts as far out as April, and now its two weeks later, so add two weeks to that. But that's a whole 'nother story.
I've also learned that if I recover heart function to 55% or above and my heart shows good contractile reserve on a stress echo, conditions are favorable for being able to have another baby without issue. There is about a 20% risk of relapse under those conditions. The really bad news is that there is a greater than 50% chance of not recovering my heart function should I happen to relapse. That scares me. It's just not fair to leave Brad and Ben, they're my everything and I don't want to leave them, so yeah. I guess we'll cross that bridge if and when we come to it.
Anyways, that's all for now.
For more information about PPCM go to
A Mother's Heart
Peripartum Cardiomyopathy Network
I never dreamed I would be writing this "story". I remember all through nursing school reading about all kinds of different illnesses and disorders and thinking about how surreal it was to be such a healthy person who has never even seen the inside of a hospital as a patient, only as an employee. Illness is a funny thing that way, almost everyone has the "It won't happen to me" mentality. Until it does.
The first time I had ever been told I had "high" blood pressure was in the fall of 2008. I had recently restarted an antidepressant that I was previously taking but had gone off of about a year earlier. I wasn't able to "be myself" even with trying other options and was pretty much miserable, so shortly after moving to Kingsville, TX in 2008 I requested to be put back on the antidepressant. On a routine follow-up my blood pressure was around 130/90. My family practitioner at the time said that sometimes the antidepressant can cause increase in blood pressure so she sent me for blood work and started me on a diuretic to help manage the blood pressure. She acknowledged that my numbers weren't terrible but that problems like this just tend to escalate, especially as we age and it was better to address it now than to wait until it would be harder to tackle. The diuretic, HCTZ I was taking didn't do much to lower my numbers so I was switched to Lisinopril 10mg which worked great.
Fast forward to September of 2010, I discovered, unexpectedly that I was pregnant! True, we weren't preventing pregnancy, but we also we're "trying", just letting nature take its course. I have always worked in areas of Maternal-Child Health nursing so I immediately knew that I couldn't take Lisinopril during pregnancy, so I stopped taking it when I got the positive pregnancy test and waited to consult with my OB. When I went to my first appt, my pressure was beautiful, 120/70. The OB, even after I explained my history, thought it was nuts I had ever been on an antihypertensive as I obviously didn't have an issue with chronic hypertension. So I took nothing for blood pressure during my pregnancy.
All through the pregnancy my blood pressure stayed perfect, even when, at 30 weeks, I had an unexpected and unexplained spontaneous partial placental abruption. My placenta was able to compensate and no harm was done to me or the baby, but since the cause was unknown, the doctor prescribed me modified bedrest until at least 36 weeks when the baby's lungs would be mature enough if he had to be delivered in an emergency. The nearest level 4 NICU here is about 55 miles away and the doctors were doing what they could to ensure baby stayed healthy so I could deliver him here, locally. While on bedrest I really only got up from the couch to make myself food while my husband was at work, to take a shower once a day, and to go to my appts. I experienced shortness of breath often. Not severe SOB, but enough to be uncomfortable, I would describe it as feeling "tight" in my chest. I chalked it up to getting bigger and being inactive for a long period of time, I figured I was just really out of shape. I also had dizziness and light-headedness anytime I was up, again I attributed it to being out of shape from bedrest. The doctor attributed it to that also, well that and advancing pregnancy. At 34 weeks I started to get a persistent but dry cough, usually at night. I slept on two pillows for reflux and that seemed to help some.
About 3 days before my 36 week visit I weighed myself and saw that I had gained 9 lbs in one week. I also noticed sudden onset of diffuse edema in my arms and legs. It was pitting, but not severe to where my limbs were so fat they were ridiculous, but I would get a dent if I pressed. I'm used to monitoring my own blood pressure so I took it knowing full and well the signs of PIH/Pre-eclampsia. It was 145/99. I immediately knew that was too much for a resting pregnant woman and became concerned. In my town, there is no way to contact an on-call OB after hours or on weekends aside from showing up in the ER and being triaged in L&D. I didn't think it was quite that serious, so I tried calling the L&D nurses station at the hospital. The nurse told me she's not supposed to give advice over the phone (I know this well, but was hoping she'd indicate whether it was worth a trip to the hospital or not) and that I should stop taking my own blood pressure because it was impossible to get an accurate reading on myself (even though the blood pressure cuff I own is designed for that) and I was probably psyching myself out. Two days later when I went to my 36 week visit, the MA who checked me in was in a rush and as she was sprinting out the room she took my blood pressure manually. I didn't mention to her before she took it that I had been getting high readings at home. She barely pumped up the cuff and told me that it was 120/70, without really concentrating or listening. I knew that couldn't be right, but I didn't say anything and instead decided to bring it to the attention of the doctor. He looked in the chart and repeated to me what the MA got. I should have told him in plain english I felt she made a mistake, but I was being too polite. He did order PIH labs on me though since I had gained 9 lbs in a week and I had a history of treatment for hypertension. His nurse called me the next day to tell me my lab work was fine, but she asked about the BP's I was getting at home, I told her and she was concerned and said she would tell the doctor and call me right back. She did and asked me to come in ASAP for a BP check with the doctor on call in the office. After the doctor on call took it himself, he sent me to the hospital for observation and a full PIH workup, labs, ultrasounds, 24 hour urine collection, etc.
My blood pressure on admission was 171/112. I was told I couldn't even sit up in the bed, I laid on my left side all night. When the doctor came in the morning, he had the nurse take my BP in front of him and then said we weren't waiting for anymore lab results we were having a C-section. I was started on MgSO4 and Torben Alan was delivered a couple of hours later. In recovery I hemorrhaged about 1700ml due to uterine atony from the MgSO4 even though the infusion was turned off prior to the c/s. It's scary now, but at the time, I was too out of it to have much of a reaction. I received 2 units PRBCs and stayed on the MgSO4 for 22 hours. While on MgSO4 I had a lot of dizziness and shortness of breath. I was told that I shouldn't be dizzy from the mag, it was probably the pain killers, but it had started before the c/s. They also said I wasn't really short of breath, I just wasn't taking full breaths because of the incisional pain. I went home 3 days later after losing 40 lbs of water weight while in the hospital. My BP on discharge was 155/108. The discharging nurse URGED me to go home and do nothing but rest because the doctor still wanted to discharge me since I was on Procardia XL and it would come down.
I continued to experience shortness of breath and dizziness when I was up and about for a little over a month, I also saw spots in my vision often, especially if I was out in the heat. I wasn't severely short of breath to the point that I felt like I couldn't get any air, my chest just felt constricted and uncomfortable, kind of like when you have a bad chest cold. I had to rest frequently. My doctor said I was just out of shape and not used to being up and about and it would go away. After 6 weeks I was taken off the Procardia XL because my blood pressure was "acceptable", though it wasn't good by any means. The doctors were confident it would continue to come down.
I went to the gym to work out some but some but gave up after being "out of shape" made it too difficult, I couldn't do the elliptical or swimming because I would fatigue and get out of breath easily.
Skip to November 2010, 6 months postpartum. I went to my family practitioner for something unrelated to blood pressure and it was found to be 160/104. She immediately started me back on Lisinopril. I questioned her about her thoughts regarding antidepressant and a link to the blood pressure and she said that the fluctuations in my blood pressure were inconsistent with side effects which conventionally improve after time or stay the same, not come and go at varying degrees. I have a family history of heart failure, hypertension, and high cholesterol, so she said it was just as likely that it was genetics causing the problem. She wrote me a referral for a cardiology consult and to get an echo because she said it was even possible that I had something congenital that I just never knew about because it had never caused me any problems/symptoms until now. She wanted to cover all the bases as I was am an otherwise very healthy 26 year old. She also ordered a lipid panel which turned up both high LDL and high triglycerides, so I was prescribed Triglide as well.
January 18, 2011 I got in to Cardiology, I had my echo first, then the consult with the cardiologist later. I had an EKG and chest x-ray, but no blood work. He made the diagnosis of PPCM based on my echo. He briefly explained to me what it was. I wasn't expecting the diagnosis of course, so I didn't have much to say. Even being a nurse, I couldn't think of the questions to ask. He said that my heart shows good reserve and that in most cases PPCM resolves on its own with time. He said that it was good I was already taking an antihypertensive to control my blood pressure and that he would leave it as it was. He didn't add any other medications. He told me to avoid strenuous activity and exercise, light walking with the baby was okay. He seemed optimistic about the situation. He didn't discuss the specifics of the echo findings with me and now I wish he had.
Of course after I left, my nursing brain kicked in and I want to know all kinds of things he didn't tell me. I don't know if there is any hypertrophy in my heart, but I am guessing not, or at least not significantly. I also want to know what my EF is. This was the first ever echo I've had, so its hard to know how bad it might have been around the time of delivery. I never had to be hospitalized for acute heart failure no PPCM, so I am gathering that I have a mild case. I have read lots of other women's stories but never have I seen someone with milder symptoms like mine.
I am still short of breath with increased activity, like say, running around the house trying to get me and the baby ready to go somewhere. Or lugging him in his carrier into a store. I took a short walk yesterday and I was incredibly fatigued afterwards. I still have a nagging, but dry cough, especially at night.
I'm anxious for answers. I don't know if I can have another baby, not that I was planning to in the near future anyways. Its scary enough thinking that I could end up with pre-eclampsia again, or worse, eclampsia or HELLP syndrome. I don't know my cardiac output so I don't know if I am at high risk of developing PPCM/heart failure again if I were to get pregnant.
Mostly I am upset about the choices that have been taken away from me. The choice of how to deliver my baby, the "choice" of when to delivery my baby, possibly the choice of whether or not to have more children (I hadn't made the choice yet anyways, but I want it to be my own choice to make), the choice to be "healthy". I feel like all these choices are gone or slipping through my fingers. And I can't help but feel like I am somehow inadequate that I "couldn't" do what is the most basic function, so to speak, of a woman which women have been doing since the beginning of time without problems.
However I am determined to try and look on this as a journey of learning and not a journey of disappointments. Well, as much as I can at least.
I've found a great support organization on the internet and I know it will help to be in contact with others in the same boat.
I'm sitting here on the last day of January and my wonderful, perfect, handsome little boy is eight months old already! This blog, much like many other things in life has been left by the wayside. My main reason for beginning to update again lies in my current medical status. I've already talked about the difficulty I had towards the end of my pregnancy and surrounding delivery. Sometimes I think I'm still a little shell-shocked from the whole ordeal, but of course, I can't say I would ever trade it for the little person with me today!
We're in the process of buying our very first home, like grownups! No more playing house in someone else's house, this one's going to be ours! I can't wait for Ben to have a true "home". Some day when he's older, he'll drive by the house when we don't own it anymore and say "That's my house." Details and pictures to come as we make this interesting (big eye roll there) journey through the world of real estate.
Coming up next an entry about my health and a new issue I am becoming passionate about.
