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This is not my life...

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My Details

Kristin Musch;

Date Diagnosed :7/22/2015

Inital EF :10-20%

Current EF :39%

Pregnacy Number :1

When I was a young girl I never dreamed the day I became pregnant would forever change my life in a negative way. I was over come with joy after learning I was pregnant... I had friends and family with new babies which were perfectly healthy and happy. Not me... Pregnancy did not agree with my body from the very beginning. I had serious issues with cotrolling my high blood pressure. I had been a healthy 26 year old with no previous blood pressure issues so I was especially careful once I found out. Every doctor appt I was warned that my child would be arriving early, but just how early I wouldn't know. I live in a small town in Alaska with a small hospital that could barely keep up with my high risk Pregnancy. My town is so small the only way in or out is by boat or plane so you can imagine the feeling of being "trapped" if something were to go wrong. Fortunately I spent moat of my pregnancy trying to relax as I was concerned with anything happening to my baby. Because my town is so small, they do not deliver babies and usually send you away to Anchorage about a month before your due date. I was dreading the day I had to leave because my boyfriend would be commerical fishing for two months (which is our livelihood) and he would be unable to go with me. I'm a first time mom, I was scared to death of being alone especially with all of the concerns over my blood pressure leading to preeclampsia. Once it was time to leave my home I bucked up and made the trip with about a month's worth of belongings and began living in a hotel. Can you imagine... 8 months pregnant with no immediate family other then my boyfriends mom who I grately appreciate coming with me (** my mother would have been there if she hadn't of found out she had breast cancer, mastectomy, and was finishing radiation during this time period...mind you all within the 8 months of my pregnancy!!). After about a week spent living in a hotel I was walking around the mall and started to feel really bad.. my head was pounding, I was swelling horribly in my face.. so i went into the maternity ward to be checked out. I'm thinking they won't keep me I'm only 37 weeks at this point and waa hoping to keep baby cooking until around week 38. Plans changed. I had full blown preeclampsia blood pressure at dangerous levels. I was absolutely terrified... They immediately admitted me and told me I would be delivering the baby that night. Full blown panic attack as I am frantically calling my mom because I needed her. How could I deliver without my boyfriend or my mom! My mom who lives in Seattle took the next flight out mid week of radiation and made it an hour after they induced me. After around 13 hours of labor i delivered a very healthy baby boy 7lbs 2 oz 20.5 inches apgar 8/9 just absolute perfection! I'm thrilled, holding my precious little boy thinking this is it...ill be healthy I can go home and start my new life as a mother. Oh no... Within 30 mins after delivery my placenta hadn't fully emerged... I'm passing large and when j say large I mean LARGE (bigger then a softball) blood clots and i can feel them shooting at my leg every time the dr pushes on my stomach.. horrible pain. The doctors give my child to my mom and take me away for emergency surgery. They manage to find the piece of retained placenta and deal with the issue only after I've lost a lot of blood. In my mind this is it... No more bad things I can start to heal and be with my child. I decline the blood transfusion that was recommended as I was told there was always a risk of contracting a disease (even with the technology today, they could not guarantee 100% virus free blood) and I was not about to risk getting HIV or hepatitis. I spend about a week in the hospital bonding with my sweet, sweet little man. I encourage the doctors that I am ready to go home it had been quite the trip to Anchorage being away from my home...my bed..I needed the comfort of home. My little man and I fly home and fortunately get to see my boyfriend who has not yet met his son ( there was a horrible storm the night my son was born and the little planes could not safely fly out to bring him for the birth). Remind you I still do not have a lot of energy as I was building bad my blood supply after my retained placenta issue. Unfortunately my boyfriend can't stay in town longer then a night. I get all unpacked, am taking care of my boy to the best of my ability. I'm home one night, ONE! The second night I am home I have my father come over to watch my son so I could lay down for an hour. Being a new mom without my significant other was rough and I even for lucky with a great baby.at thjs point I am having a hard time breathing. No matter what I tried i could not take a Full breath it was absolutely horrifying. I knew...deep down something was not right. I ask my dad to go to the emergency room to help me care for my child as I was breastfeeding and needed my baby with me no matter what was happening with me. 

My nightmare would begin... 

I'm thinking this is not reality. Ive already had rough pregnancy, the stupid retained placenta I cant possibly have any more bad luck. Boy was I wrong. as I sit in the hospital they attach all these cords to my chest, they call in the Dr from home as its probably 2 in the morning. He has me get an xray of my chest... I have no idea what is happening to me but I do know one thing I have a week old fragile baby who is relying on me...I am scared to death after i hear the words "it's not as bad as if sounds, but... You have congestive heart failure". HEART FAILURE? I'm 26. This is not possible. How! Why! Why me?! I didn't even know post partum cardiomyopathy even existed. And now I am being told I have it. They admit me to the hospital and begin contact with cardiologists in Anchorage. I am put on a million medications all of which I refused to gake until it was checked, and checked again to make sure I would not be hurting my baby Boy as I was not going to stop breastfeeding. They decide to keep me four days in the small hospital in my town as long as a camera could monitor me and my.vitals 24/7 from providence in Anchorage. I went from never having a health issus or even taking medication...not even ibuprofen for a headache to like 16 different pills a day. The first few weeks of my child's life were not supposed to be spent in a hospital. Life was being unfair to me. To my child! I feel as if I'm herring a little better with all the medication I'm on. The doctors and cardiologist decide i can leave the hospital as long as I go to Anchorage within the next few weeks to have an echocardiogram done. All along I am beyond my self not knowing what my fate would be. I go home and things just het worse... I'm back and forth to the hospital and finally they decide they want to medevac me to anchorage but I would not be able to bring my child. absolutely not.  He's barely two weeks old, there is no way I am leaving without him. I stay over night and take the next flight to anchorage and head immediately to the ER. I was under the impression I'd have the echo and be back home after a day or two. Nope... Wrong again. The echo was horrible. I see a cardiologist for the first fime and all at once as I sit in the er with my baby (and my mom who thankfully finished her last day of radiation and flew straight to be with me... As my boyfriend is still gone fishing) the doctor uses the words "you are very sick", "you will no longer to breastfeed", and "I highly advise you never have another child". Am I hearing him right? Did he really just take what was left of my heart and rip it into a million pieces. This can't be right. I was healthy, perfect in fact before I got pregnant. Now I am in heart failure? So quick. Talk about taking a hit outta left field. So there I sit hearing my fate. My future... If I was to even get the chance at a future. "We don't know if your heart is going go het better, get worse or stay the same". I sit admitted once again to the hospital being told they can't explain my heart and what's going to happen to me. I sat for days trying new medication cocktails trying to keep my pulse down and my blood pressure at a level that would not put so much pressure on my heart. A heart that was already broken, crushed... Torn apart. This went on for a week.. I felt hopeless. Depressed. Sad. Scared. No one could tell me what to do..talk about a mind *uck . This is supposed to be the best time of my life I have a brand new baby who is everything I ever dreamed of and he definitely did not deserve spending his life in a hospital. I had planned on breastfeeding until at least 1 year but thay was abruptly taken from me. Broke my heart i could not give those special nutrients to my son. I didnt know anything about formula I had never wanted to be that mom. I'm fact, sadly i had even judged mom's who formula fed before I became that mom. How ignorant I was. Never had I thought some mom's have no choice and would love breastfeeding but can't because of medical reasons...any reason actually. How I regret those negative perceptions of mine . 

After a week of hell, ending breastfeeding after only 3 weeks, being given the worst news of no more children by seriously at least five different cardiologists in AK and WA, not being able to get out of my hospital bed. I didn't shower in a week... a whole week. The nurse wanted to "sponge bath"... I think not. i was already stuck in the progressive care unit with elderly INFECTED patients with a three week old baby.. I was not about to become like them. I'd clean myself. I needed that. I needed to do it for myself or I think they may have mentally lost me. My week of hell came to an abrupt stop when I got the biggest miracle of my life. Dr Amos and woman... A woman who was a mother. A brilliant cardiologist who had other patients with my condition. Finally. Finally someone who literally walked into my room and brought life back to me. She was beyond amazing, encouraging. Actually encouraged me to speak with others with my condition. Up until this point I was so broken and no one could tell me I was going to be ok until her. She couldn't promise but she swore I would not die. Death...Death was off the table. I could be the mother my child needs and most importantly deserves. After that I was a different person all of the negative things that happened I ad changed. Strength to move past this became my goal. With the help of my Dr and hard determination I was able to find a medication cocktail and start slowly moving about on own. Walking through the hospital was such an accomplishment considering days before I could barely make it.to the bathroom three steps away. My whole mood had changed.. no one could take away my faith I would recover. i was determined. I cuddled my sweet boy, gave him all the love i had to give and finally became well enough to leave the hospital. I had one more echo done before I left no fly home and was happy to hear my ef had gone from 20% to 25-30%. I was improving!!! Best news I had heard since the obgyn told me i had delivered the healthiest little boy. Finally something positive again. I have my whole life ahead of me and ti thibk I wasted three weeks in hospital beds not enjoying my child's first days because of some disease i was letting control my mind. It may have controlled my heart but I was no longer letting it control the rest of me. 

I have had an MRI at two months post partum and was lucky to hear my ef was up to 39%! Although I have a long recovery ahead of me I am encouraged that someday I will be healthy again. My heart is going to get better. I've gone from an ef as low as 10% and near my death bed to 39% and I could jot be happier. My son is a whopping 15.6 lbs at 3.5 months old and i just love him more and more everyday. I am so grateful to many people. The dr in my small town who diagnosed my post partum cardiomyopathy may have saved my life by recognizing the signs and symptoms and contacting a cardiologist right away. Who knows I may not be here to write this story if he woild have missed it. I am also blessed to have such an amazing cardiologist at my side. she truly brought life back into me. I could never thank these special doctors in my life. They saved me. One day I wool be full again and I am forever endowed to them. I also want to end by thanking all of you wonderful heart sisters. as i laid in the hospital bed more depressed then ever this website and your stories absolutely 100% kept me going. This is a very lonely, isolating disease and just knowing there are so many others who know my pain and struggle helps me keep strong. So I thank you... Thank you more then you will all ever know. Here's to a better, healthier heart..and life! I wish you all the best. One day they will have more information on this disease and hopefully other's won't have to experience what we all went through. Good luck. we all have lives to live with our little babies... Mine is starting now!

By Date Added: 11/11/2015 Date Last Updated: 11/11/2015

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Story Comments


re: This is not my life...
Wednesday, 16 March 2016 by Sara Smith

God is good  my name is Sara  and I was diagnosed with PPCM . My name is Sara  I am  36yrs old I got pregnant in 2013 I had a healthy pregnancy up until 36weeks  then I started getting swelling in my feet and legs  and  my heart rate went up and blood pressure  I got diagnosed with preeclampsia. My Ob was watching me then when I was 39weeks  I had a beautiful healthy baby boy,  2 days after birth I got sick my heart rate  and blood pressure  went up  very high  it was very dangerous doctors did tests and blood work was done to Determine that I had cardiomyopathy . And was prescribed high blood pressure meds EKG stress test and Echo determine that my heart functions were at 10% gradually increase to 55% well on bp meds. I had regular care with my cardiologists, watching  my  heart functions.  Then in 2015 I got pregnant again doctors did tell me that the preeclampsia could come back with this pregnancy, that pregnancy was also a healthy pregnancy up until 35weeks  I again developed preeclampsia  my heart rate and blood pressure went up  with this pregnancy my cardiologists and Ob was watching me closely I was having regular echos  the at 36weeks  I had a beautiful healthy baby girl February 2016. Then after baby was born my heart rate went up as well as my blood pressure  again  I had appointment with my cardiologists and Echo  to find out that my heart functions went down to 44% from 55% so I am now diagnose with PPCM 

 

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