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  1. #1
    yanceylynn
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    High risk due to pre-existing medical issues.

    Is anyone else here high risk do to pre-existing medical issues? I have a rare liver condition involving tumors. (Long story I'll share later.) I know I will likely not find anyone else like me... but maybe someone else may have a non-pregnancy related high risk issue that we would share some things in common.

    Would love to hear some stories. Most days I'm great... but I feel like there are very few who truly understand the fears you have when you decide to risk your own life to live a fuller one. I'm sure all is going to be fine... but the risks will always be there lurking.

    Thanks for listening.

    Yancey


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  3. #2
    kloo
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    I also decided it was worth the risk , I have hypertrophic cardiomyopathy.
    some dr's say its ok to have that and be prego , some try their hardest to talk you into terminating ..ive had both types dr's in my 19 weeks of being prego...ive gone through 6 so far because each of my former dr's said they werent willing to take me on as a patient with such a severe problem & me going AMA.
    the risks are that my heart may not be able to handle pumping all that xtra blood , and that my already damaged heart can be even more damaged just from being prego.
    they advised me that if i was able to carry to term , that I have my tubes tied immed after.


  4. #3
    yanceylynn
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    Nice to meet you. Wow! thanks for sharing. I am also 19 weeks pregnant.

    I had IF issues for 3.5 years as well and was worked up by one RE who also did surgery on my uterus to remove polyps with the expectation that we would be doing IVF. At my post op she decided she wasn't willing to get me pregnant. Thank god I had insurance for all the work she did. It was heart breaking. I spent the next year trying multiple failed IUI w/ Femera with my OB, not knowing what to do, until I found another RE who was willing to take the risk.

    I spent over 10 years with doctors telling me it was too risky but the ones I have now say it is up to me and they are willing to watch over me if its what I really want to do. I also had doctors wanting to transplant my liver years ago because they just didn't know what to do with me and were scared. It's been a journey. My current OB practice is a little split on who agrees that it was okay for me to get pregnant. One doctor still tries to scare me everytime I go in there. None of them have or ever will see this particular problem in their careers again and they just can't see straight over it.

    How long have you known about your illness? Have you had ANY complications so far? Your blood volume should be up by now. Are you having any decreased cardiac output or perfusion problems? I’m a nurse so I'm also fascinated by our medical challenges.

    Hope you are feeling well and liberated to be pregnant and living strong.

    ~Yancey


  5. #4
    ANP
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    Congrats on your pg and love to support you through this also...I am 16 and half weeks but do not have medical challenges other than recurrent loss. Welcome to the bb and hope that your pg is free of complications just the normal aches and pains. Sounds like you and Kloo have a connection too...Make sure you also check out the due date bb also as you'll have lots of people to connect with there also. Good to have a great support system when you have so much going on. Look forward to seeing your updates.
    AMYP
    AMYP
    Lots of IF heartaches and 6 lost angels
    dd---6 years(Miracle of domestic adoption)
    ds---1 year (Surprise natural Miracle)
    PG with #3 --DD 1-16-07-(she's here 12-16-06)


  6. #5
    kloo
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    Luckily things have been ok so far. They have checked my ejection fraction a few times & it hasnt decresed any further , It could be due to the toprol XL im taking...I doubled my dosage.
    One thing I notice is much more frequent arythmia , it gets so bad ..a few weeks back it didnt stop for 10 days straight. Now it comes and goes for a couple of days. I have to be careful when its happening becuase I could pass out , so I stay in bed/couch most of the time.
    They first dicovered the problem 3 years ago..but I never thought id be able to have children , so It never dawned on me that there would be such a huge problem.
    I went about getting pregnant on my own , since 12 years of dr.'s were of no help , and i was immed. advised to terminate . The dr's Im seeing now have arranged for me to have a cardiologist team in the delivery room & im being closely monitered ..finally.
    The Dr's kept pawning me off , and until this week, I hadnt even been examined by a ob/peri since june 1st...talk about stress. I did have an amnio on the 19th , but nothing more.


  7. #6
    yanceylynn
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    Wow Kloo... I'm sure the stress of not having a team of doctors willing to cover you didn't help with the arrhythmia. The nurse in me immediately thought of just a few things... I'm curious if your cardiologist would agree. Hope you aren't offended by my 2-cents. just a few thoughts.

    Laying on your left side... see if this helps with any arrhythmia when it happens.

    Be careful about too much reduced activity... I would be concerned with clots in your case, especially with an arrhythmia and all pregnant women have an increased risk due to hormonal changes.

    Stay cool... this intense heat we are having as you probably know will dilate your vessels and may effect your BP and other cardiac function.

    Take care of yourself. Keep us in the loop on how things are going. If you are like me you know your condition better than most of your doctors. We are our only advocate.

    ~yancey


  8. #7
    kloo
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    They are concerned with blood clots , in fact they sent me to a lab to draw 14 vials of blood on monday, the tests they were doing required the blood be frozen within 30 minutes . I can only rememeber one of those tests , it was for lupus ..they said that test has indicators of blood clotting or something along those line..i was kinda freaked out when i heared it was a lupus test ..I was thinking ..thats all i need...but its not really for lupus.
    i pretty much have laid down for the entire 19 weeks, the 2 times I decided to something ..once was the dishes ..I had heavy bleeding & cramps ..so im too afraid to do anything. And becuase Im used to working out at the gym 4-5x a week , my body isnt happy with no excercise ..so ive gained 40lbs already.


  9. #8
    lambchops
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    I wanted to stop by and congratulate you. I too was high risk because of pre-existing medical issues. My son was born on May 6 (five weeks early because of my problems) and is doing brilliantly.

    My problems? I have a congenital defect that resulted in massive urinary tract deformations. My ureters were six feet long and went from the size of a hair to that of a fist. I had my kidney removed about seven years ago (FINALLY!). Because of the missing kidney I have high blood pressure. I also am a cancer survivor of a decade (I was 19 when diagnosed). I had non-Hodgkin's t-cell lymphoma and was treated with chemo, surgery and radiation. FInally I also have hypothyroidism, anemia, and various issues with my sugar.

    I'm a royal mess!

    When it came to pregnancy, it turned out to be very difficult. I started having issues around 19 weeks. I began to swell uncontrollably. I began having migraines at 22 weeks. I was taken off of work at 27 weeks and was promised that I would indeed have pre-eclampsia. At 28 weeks I was diagnosed with gestational diabetes and I took insulin shots. By that time my blood pressure was really high--150/95 or so--but it got worse. At 29 weeks I began going in for twice weekly NSTs (which almost always turned into BPPs). At 33.5 weeks I was admitted to the hospital for three nights for observation because of my blood pressure. It had spiked to 155/100. I was released and admitted a second time for a night shortly thereafter. Finally at 35 weeks 1 day I was admitted for the last time. My blood pressure was up to 160/110. I was swollen more than anybody can possibly imagine (I physically couldn't bend my knees) and was showing all the severe pre-eclampsia symptoms. I was induced and my son showed up 12 hours later and spent two weeks in the NICU and pediatric ward. Following birth, my blood pressure continued to rise. Two days post birth, I hit 175/115. I'm getting better now

    Indeed you can have a vaguely healthy pregnancy with lots of doctor care. My son is perfect. I'm recovering and have kidney disease officially in my remaining kidney but am doing pretty well considering.

    Good luck!
    --Shelly (31), DH (32)

    Mommy to Zachary Nathan (5/6/6), Only Child...HELP!

    Sevencagedtigers.com - Blog
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  10. #9
    yanceylynn
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    Wow labchops! You are why I posted this thread. Because no matter how bad you think you have it... you can always find another survivor who has it a little worse than you. I hope you continue to make a recovery and can salvage enough renal function to save your remaining kidney. Congratulations on your beautiful new son. I'm sure you stare at him with wonder and would do it all over... I imagine that's how I'll be once we get through this.

    Take care and good luck. Keep in touch and let us know how you are progressing.

    With love,

    Yancey


  11. #10
    lambchops
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    I certainly will, Yancey. I posted my response for the same reason you posted your thread. I want to know about other people who have gone through problems. I'm crazy like that. Good luck with your own issues--there is always a light at the end of the tunnel.

    Here's some photos of my own little light, Zack:

    http://flickr.com/photos/lambchops/s...7594163812529/
    --Shelly (31), DH (32)

    Mommy to Zachary Nathan (5/6/6), Only Child...HELP!

    Sevencagedtigers.com - Blog
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