New Girl-Needs lots of Advice

[twinsplusonemom]

Hi, my name is Courtney Cassells and I live in Ft Lauderdale, Florida. I was dx with PPCM when my twin girls were just 3 weeks old. I had a uneventful pregnancy and delivery. When my girls were just 2 weeks old, I became really ill. I ran a fever of almost 104 for almost a week before my OB finally decided to have me admitted to the hospital for testing. I had been to his office 3 times that week and was put on antibotics but they didn't know what was wrong with me. I was admitted to the hospital on 2/12/04 and they did a bunch of blood tests and chest x-ray and the works. Come to find out that I had a severe kidney infection. They put me on massive amounts of IV antibotics and the fever was getting better. Well when they admitted me they put me back on the maternity floor since I was post partum with a c- section. After the first night in the hospital, I complained to both the nurses and my OB that I was having trouble breathing at night and that it felt like someone was sitting on my chest. They kept telling me that it was from the infection and that it would get better. To make a long story short, 4 days after being admitted, I still wasn't feeling quite right. I was feeling really tired that day and decided that I was going to take a nap. Next thing I know, I could feel my heart jumping out of my chest and I passed out. When I awoke, I could hardly breathe. I called for help and the nurse came in and I told her what had happened. The next thing I know they were doing bloodwork, EKG and an Echo. Next thing I know they have a cardiologist in my room telling me that they are moving me upstairs for better care that my heart was going in and out of fibrillation. What I didn't know until I got there was that they put me in ICU and put the automatic defibrillation pads on my chest. They told my husband not to leave because they weren't sure that my heart was going to last that much longer. I had an EF of 20% plus they diagnosed me with Long QT syndrome-a hereditary heart defect that most people die of before being diagnosed with it. Also known as sudden arritymic death syndrome. 3 days later they transferred me to another hospital where I had an ICD implanted in my chest. I'm on Coreg, Vasotec and aspirin. 3 days after sx, I went to my GP for a referral and complained about my left arm not feeling so great. He told me to go to the ER where they diagnosed me with a DVT caused from the sx. So the next 6 months I was on coumadin therapy. It's been a year now and it's been a real emotional rollercoaster. You know going from a healthy, active person with a normal first pregnancy to having a secong pregnancy that was uneventful to becoming very sick took it's toll on me. I was diagnosed in Jan 2005 with post traumatic stress disorder from the whole ordeal. I also suffer from anxiety over my health everyday. I see a therapist every week just to talk about how I'm feeling. I do the best that I can do, I work 50 hours a week plus take care of 3 children under 3 and also all of the household chores. It has taken a damper on my relationship with my husband, but we are also going thru therapy and he is starting to help out a lot more with the kids and home stuff. He just doesn't understand what I have been thru and the guilt that I have that I may pass it on to my children. If anyone have any advice how to cope with the anxiety or has a similar situation, please help.

Courtney Cassells

Ryan 5/5/02
Twins-Caitlin and Mackenzie 1/21/04
Michael-husband-married 7 years

dx- 2/15/04
EF-20% 3 months later 35-40%
Also have Long Qt Syndrome

[amyls]

I'm glad you found the site! Sounds like you have a lot on your plate...but it sounds like you are doing everything you can do. I am almost 5 yrs post DX, and it does get easier. Are you feeling bad about the Long QT and your kids?? You know, I'm sure that you know you can not blame yourself for something you had no control of. Your family is lucky yours was diagnosed! Right??
Is your husband helping out more?? You're still recovering, it takes time. even at just a yr, you are still frightenend, we've all been there. Just take it one day at a time. I 'm not sure I have any great advice, except, take some time for you....a bath, a walk, even sitting outside byyourself...just something for YOU.
I'm glad you found us, and I hope you will find it helful. All the girls are great.
amy

I'm still on all my heart meds too, plus coumadin, I had a stroke on the cardiac floor right after being diagnosed with the PPCM.

[melissamph]

Courtney.

Wow! It is hard in the beginning but I can tell you it will get better! I hope your hubby is helping you out more. You do have a full plate! I want you to know that I will be praying for you and you family! Please feel free to contact me with prayer needs or anything.

[Natasha]

I'm glad that you found us! We will do everything we can to support you. We know that it is not an easy road.

Recently a teenager here in MN died due to sudden cardiac death. It was a true tragedy. However the blessing that came out for the family is that the other 3 children had their hearts tested. One sister had an abnormality and now has an ICD. If you look at it that way, by having your diagnosis, you will be able to have more informed care for your kids, hopefully preventing tragedy.

I, too, have an ICD. My kids are being followed by a cardiologist, but so far nothing has shown up for them. We just know that we need to be aware.

It sounds like you are doing everything you can. Hang in there and let us know how we can help!

[JAMESFETT]

Courtney, you have a most remarkable story to tell, and I am glad you are here to tell about it. I am sure the fever caused your physicians to overlook the heart failure initially, but that is a familiar story. Many physicians in the USA are not yet sensitive enough to the possibility of heart failure in the pregnant and postpartum patient. What is your current EF? You are surely on the right track with your treatment of PPCM, you are certainly healing. Little wonder you would have a post traumatic stress syndrome and that, too, will clear with counselling and treatment. Prayers for complete healing, and best wishes,

James

[mandyb]

Hi Courtney!

I am glad that you are here and doing better! I promise it gets easier even though there are times when I still feel like crying all day! I am sixteen months past diagnosis... fortunately, my ef is at 64% and I am still on medication.

One thing that helped me to not feel so bad all of the time was to "contain my grief". A counselor told me to spend 45 minutes each day by myself either writing or just thinking. During those 45 minutes he told me to just feel bad about everything that had happened. At first it made me feel bad even after the 45 minutes, but eventually I could just feel sorry for myself for that period of time. It really helped!

Good luck!

Mandy

[Lisa V]

Welcome!!!!!!!!!!!!!!!!!!
You have definitely come to the right place for support and help.
I am now 5 years past diagnosis and I cant honestly say that it does get better. My EF at dx was 10% and it did take a toll on my husband and mine relationship but with time and healing things are the way they used too be and maybe even better. I know what you went through was very traumatic but they also went throught saomething very tramatic, possibly losing his wife and having to take care of a newborn and other children. I am sure it put fear in him and maybe he just has not gotten over that yet. I am glad to hear that you are doing better and are on the right road to recovery. Please read my BIO and learn more about my episode with PPCM.
I

[momofthree]

Hello and welcome. I am also very thankful that you are here to tell your story. You have done well sister and you will continue too. I hope there is time for you to take time each day to write ... journaling helped/helps me tremendously. I can be raw and get out those things that are difficult. Prayer and faith is also paramount in my life. Purposeful prayers and faith.

You need not have guilt about your kids and possible issues of what we can pass down in our imperfect bodies. I refuse to allow that to steal joy in my house. It is not always easy but support here certainly helps.

You have been through so much and I will be praying for you too. I enjoy lifting up my sisters here in this site. They have been a major help to me.

Take time for you!!! It is not easy with your load but it is essential.

God bless you and yes you are still healing!!!
Alison

[mom2gageandkeely]

Hi and welcome! I was diagnosed in 1997. It does get better , it is very emotional in the beggining and I too had post tramatic stress disorder. Look forward to talking with you! Jenn

[momoftwoboys]

Welcome to the boards Courtney! If you are looking for support from people going through the same situation as you, you sure came to the right place! You sound like a very, very busy mom. I also work a lot (about 40-60 hours per week) plus I do pretty much all the "child-rearing", cooking and cleaning. Sounds like you have one of those "old-fashioned" hubbies also, LOL ;) . I'm also on the headstart council and sell Mary Kay too. I (literally) know how scared you must feel. I'm only 27 (well 27 tomorrow :) ) and am about 3 1/2 years past diagnosis. I have a 3 1/2 year old boy, Ashton, and a 5 year old boy, Jaden. I'm glad you found us and hope to keep seeing you around on the boards! We'll be here for any questions or concerns you may have.

[Anny311]

I just wanted to say hi and welcome too. It is tough, even after a year and frightening. My DH, who is completely helpful and sensitive still says he doesn't understand my fears. It is just different. I am considered completely healthy with an EF of 50-55% and still on meds but my Cardiologist tells me he expects me to be around for a while :) Still I have that nagging feeling that I've been lucky once...I try to channel it into being thankful and "in the moment" as much as possible and to take good care of myself (but not such good care that I would pass up chocolate!). Best wishes to you. I am also a twin mom and that is daunting! I hope you come back for support and friendship...

Anny311