What does it take--Part 5

After 4 months we moved states. Talk about tough!! We had to acclimate to a new culture, new weather patterns, and new elevation. Not to mention I had to make sure I had all my ducks in a row (pick up copies of my medical records, set up new doctors, and make sure our move went smoothly administrative wise). It was a nice distraction and I was looking forward to the move, the truth is OKC had never really been the ideal place for this little TX girl and after loosing my daughter I hated everything about it. Everything but my cardiologist! I was really nervous about having to find a new cardiologist.

When we arrived in our new home in New Mexico we were surprised at the giant house we had gotten. We were surprised at how remote it was, and we were surprised that our cell phones didn't work! The scenery however was beautiful!!! I hadn't lived by mountains since I was very little in Mexico and I loved looking at something other than flat, barren land. The house was beautiful and it was the first time in our married life that we had gotten placed in a single family home vs an apartment. I had set this house up months in advance, before everything happened, so it was tough looking at it without picturing Michelle's stuff all over the place. The fact that we had very little furniture at the time didn't help the situation. Once we got settled and I didn't have anything else to occupy me I dipped into depression once again. To add to that I noticed I was feeling short of breath very quickly and didn't know why this was happening. I began having panic attacks, one was bad enough that I went to the ER they have here (a tiny room with ill-equiped staff) where the nurse on duty told me that I was merely having a panic attack and that I needed to calm down. Once I made them give me an EKG (b/c I was not leaving without proof that I was not having a heart attack!) I went home and the next morning I made an appointment to see a PCM (primary care manager). Since the PCM wasn't available for a week or so and I needed refills I went into the clinic and they were able to set me up with my refills and I asked what I had to do to get a referral for a cardiologist, the doctor on duty told me that he was the "cardiologist equivalent" and that he'd be happy to consult me, I told him thanks but no thanks and insisted on a referral. I should inform you that I am an Air Force wife, in an different branch post...in the middle of no where. Needless to say...tough times! But more on this later....when I met my new PCM I told him about the panic attacks I had been having, and about the shortness of breath (which by this time was beginning to get better). He told me I had experienced something called "elevation sickness" and that it was very common in this area...can we say BIG sigh of relief!?! And he agreed that I was indeed having panic attacks and I was in a deep depression which of course was understandable. He strongly suggested seeing a therapist and maybe taking anti-depressants. Well I was on enough pills so I took the first option.

A few weeks later I went to go see a therapist for the first time in my life. It's helped me a lot, 2 years later I still see him. I feel like it's good to have that kind of person in your life someone that will listen to your problems no matter how petty and will help you reflect on them. I highly recommend it! Slowly with a lot of work and some wonderful advice from my therapist I was able to dig myself out of the dark hole I was in and focus on having a fulfilling life, not one stuck in the past.

As for the cardiologist situation: after lots of advocating on my behalf I was referred to a bigger military hospital where I saw a military cardiologist...well saw is such a hard word to use. You see, my cardiologist had this useless secretary that would never be able to schedule me for an appointment (I called her "the Gatekeeper") in the 10 months or so he was my cardiologist I was able to see him 2 times after months of trying to see him. With the goals I had in mind this arrangement was not going to do, so I got a referral for a civilian cardiologist (which I got to pick!). This of course didn't come without a lot of work on my behalf and my PCM's.

Selecting my cardiologist was a little difficult I didn't want to have to change again, so I googled to my little (big) heart's content. I found a doctor that had studied at several prestigious hospitals (Mayo clinic included) I scheduled an appointment and printed out all the info I could find on PPCM for him to study if he wasn't familiar with it. When my appointment came I took all that research I had done and went to meet the new cardiologist. The first question out of my mouth was "how much do you know about PPCM?" he looked at me with a puzzled look and said "actually I know quite a bit, I studied at the Mayo clinic under a doctor that was studying it when it first became an actual diagnosis, I've treated a good handful of women with PPCM...is that what you have?" after sending a quick 'thank you!!!!' to God or whoever was looking out for me that day I told him my story. He immediately browsed my file then sent me for an echo and full spectrum of blood work. A couple of weeks later I saw him again and found out my EF (ejection fraction) had gone up again! Now it was at 73%! And since I had been on the meds for a year and a half I was now eligible to start weening off the meds. He also didn't think I was a nut job for wanting to have another shot at motherhood which made me very happy!

Weening off the meds was a long process, he wanted to be careful and ween me off slowly while increasing my cardio activity. He told me to start adding a little more sodium in my diet (up to 2300 mg a day) so we could test my body's limits. It was awesome to see that I was living like a normal human being for the first time in what seemed like FOREVER and feel great while doing it! At the end of my pill removal process I went on a 4 mile hike up a mountain with a group of friends, I had a bit of a panic attack when I found myself short of breath (once again forgetting elevation does that to a normal person--until my therapist mentioned it when I told him about it). Other than that I was happy that I was able to survive it. When I saw my cardiologist again, he did another echo that looked the same as the last time I had gotten it. I told him about my hiking and he was VERY impressed. He told me I could get off my meds, and I asked him "ok...can I get pg again?" he smiled and said "I don't see why not...you climbed a mountain! You can do this!" of course I started crying and he told me to control my emotions because I was going to have too many soon. He recommended that I continue seeing my therapist and that I see a high risk OB before I decide to get pregnant but that I had the "all clear" from him.

And so feeling on top of the world I went off to fight for the referrals I needed to get the "all clear" from all the other doctors to continue on my trip down mommy lane.

To be continued...

What does it take -- Part 4

About 2 weeks after having left the hospital I had follow ups to schedule and go to. Let me tell you scheduling an OB appointment after having lost a child is painful. I remember I called my OB's office and telling the lady on the other side that the Dr had told me to call her for a post-partum follow up and she wanted to see my on ___ date. The lady asked me if I had given birth, and I said yes. She asked how I was enjoying my baby and I told her she had been stillborn. And she said "Oh! You're that Mrs. _____!" ....what do you say? Well I said "Yeah I guess" and of course began to cry. Yay hormones! So she went on to tell me that my Dr was going to see me during her lunch hour so I wouldn't have to wait. I told her I appreciated that. And got scheduled for my appt. You are actually going to hear very little of my follow-up OB appts because they are too painful to remember. I will tell you this...during my first OB appointment she took off the little tapes that they had put over my c-section incision and I asked when they were going to remove the stitches and she told me that they would dissolve by themselves that I was really more glued together than anything else. Talk about scary!!! When we went outside and I saw the ground covered in sheets of ice fear took over me. I would only shuffle along holding my belly because I honestly pictured my uterus flopping out onto the ice or something like that. Looking back that is one of the funniest experiences I've ever had LOL.

Luckily my first cardiologist was AWESOME!!! He's incredibly young but I think that's what makes him such a great doctor. He didn't want to accept a negative prognosis for me, he did his research and found that usually a combination of ace-inhibitors (A-I) and beta blockers (BB) combined with diuretics to get rid of the extra fluid, a fluid restricted diet and sodium restricted diet usually yielded satisfying results. He sat me down and he told me what most cardiologist would tell me--that I wasn't guaranteed a chance to get to be pregnant again. I was told that PPCM research is very scarce and that the truth was no one knew what caused it and that curing it was hit and miss, to consider myself lucky if I didn't require a heart transplant. Then he told me "let's fix your heart first, then we'll see how you can get pregnant again if you decide to do so" talk about HOPE!!! So we got to work! I started with a ridiculous list of meds and even had to get a pill sorter to keep up with everything. I stuck to my diet restrictions like glue, and would do exactly what he told me what to do.

Just before Christmas we got the call that our daughter's urn was ready, now we had to go pick her up. I couldn't let my hubs do that alone and so I went with him. I hadn't gotten a chance to really come to terms with anything and here I was in the car going to some funeral home I'd never seen to pick up what was left of our daughter. I could tell my hubs was not ok, but I didn't know what to do to fix it. So I just held his hand and told him how much I loved him and we went in the funeral home. He did all the talking and the lady there was very nice. She took out the urn and gave it to us to inspect. The second that urn hit my hands I lost it and so did my husband. I couldn't believe that was all that was left of our Michelle. After about 45 minutes of crying in the car, we finally pulled ourselves together and went home.

Christmas came and my dad and little siblings came to visit for a week. It was nice to have them there but painful to see the pain they had in their eyes. My baby sis (8yrs old at the time) was especially confused. So we all did our best to pretend nothing bad had happened and celebrate for the kids. We rented movies and would spend our days clumped up in our living room watching movies (minus the popcorn and goodies). New Years eve I was allowed to leave the apartment to go with my hubs and pick up my cousins from the airport. I was so happy to see them, they were just what I needed, people my age that would distract me...well ok, they are a little younger but still an excellent distraction! We got back to the apartment and chatted up with my parents for a couple of hours then went to bed. The next day my parents and siblings left. It was hard to say goodbye to my mom after having depended on her so greatly for an entire month. Beyond that she was taking my Michelle. We had decided that the best place for her to be was at my Grandma's house with my grandpa's ashes and my brother's ashes. So I had to say goodbye and I couldn't do it, just like when I had to say goodbye to my brother (died of cancer in 2002) I couldn't do it, so I didn't I just said I'll see you soon! I knew I'd be home to see her soon.

After a complete meltdown, I turned to my cousins (who were also crying) and said..."so where are we going?" they looked at me confused and asked if it was safe for me to go out and I said "I have to, I might go insane if I don't PLEASE let me out of here!!!" so after talking to my hubs we decided to go to the botanical gardens and to the zoo (my two favorite OKC places). I would have to stop often and take food in case I got hungry, and it was FREEZING but I needed to get out and the fresh air felt so good! After I told my cardiologist we had done that he was very impressed that I was able to hold up to such day trips. Soon all my family was gone and my hubs and I were left to pick up the pieces and march on.

A month after waking up in ICU everything finally hit me. I remember I was at the checkout line at the store and realized it had been exactly one month. I turned to my hubs and said "I almost died a month ago" he says that I got a panicked look on my face and began breathing quickly and he knew I was about to have a panic attack so payed quickly and got me to the car so I could freak out in peace. I honestly just remember telling him that but I don't remember how I got home...funny how the brain works that way.

Three months after my hospital stay I was completely recovered. With an ejection fraction (EF) of 65% (normal is anything above 50-55%) and was able to do cardio for up to 25 mins. Considering I started at 5 minutes a day it was rockin'!

To be continued...

Sorry for the long pause!

Hi everyone! So sorry I haven't blogged in what seems like forever!! A lot has happened in the past few months and I'll be blogging a lot about pretty much everything! When I last left you I had just told you about my story and how I was going to try to have another baby. Well since then I have had many doctor's appointments in preparation for trying to conceive (which I will tell you all about) and had been trying to conceive for three of the longest months in my life! And now I'M PREGNANT!!! I am 13 weeks pregnant and have already seen my cardiologist 2 times, and will see the perinatologist for the 2nd time this week. So obviously we have a lot to catch up on and I will be posting everything within the next few days.

Thanks for hangin' in there!
M.