I'm home,thank you guys for your support

[tiggerangelgirl]

I just got home a few minutes ago decided i didnt want to stay away from my girls and home anymore.Thank you so much you all it has been a tremendous blessing toread that you all tried so hard to find out where i was that touched me so much,i'm still crying. Things have been really bad and i am soooo scared,those drs at the dumb hospitial sent me home and i still feel really bad.Has anyone ever heard of Depaul hospitial niethier did i until i was there,it was not a very pleasent expierence,i stiil dont feel right something is wrong and its scaring me,i know im going downhill and dont know what to do,thank you so much for your support it really has helped,i asked my sisters to try to write to you but she really doesnt know much i havent seen her in over a year,she moved back upstate and tries to stay away from my mom,my mom is a very different person she has always struggled with her mental status and it really took a roll on all the kids the only reason i made it out is because of God,he gave me a knew and completly different kind of family with love and support growing up we didnt get much of that and now as i go through this sickness my own mom does not support me or try to help,shes like the child and i am tyhe mom carrying all her burdens and right now i'm not strong enough to deal with her,shes back to her "hypocondriac"episodes and thats all she calls me for to complain how bad she hurts and she is making the docter due surgery on her back,you want to know what she asked me tonight ?if I could come over and shampoo her carpet,it really hurt me
Sorry im dumping all my junk on you but i believe you all understand the pain and sickness and fear that goes on when you know there is not a whole lot of time to get things fixed
I'm really scared the hospitial said that they werent going to do anything because i was already beeing followed by the duke drs so just wait till you see them,they also told me that there was no way any dr would do surgery on me know because iam not well enough ,could someone explain that: it seems like an oxymoron,if i had surgery wouldnt fix most of the problems and then maybe i wouldnt feel so bad ,i wish we had this support group right where i live because right now i could use all the encouragement and love i can get.My church family is awesome but we are struggling as a church we havent had an preacher in a few months so we arent really having services and everyone seems to be fighting thier own spiritual battle,i also know most of them just dont understand why iam so sick and am not getting better,we held special prayer srevice,annoited me and still the sickness continues,i kmow God has a plan for all of us and if i can just get through these next couple of days maybe i wont be so emotional,i'm usually the strong one encouraging and lifting up everyone else thanks guys for caring i can truly feel your love
Im not to sure what my sister has told you or even if any of it was the truth,but a couple of days ago{ive lost track i dont even know what today is,i had sudden and severe pain in my left shoulder blade and below and it was piercing through my chest,withen 45min my oxygen fell to 82 and after that i dont remember much,just hearing the dr saying he was going to support my breathing,then i woke up in thid dumpy hospitial with drs asking all these questions and then they left me for a long time then they came back told me i had to have two transfusions one blood the other red blood cells i have to get them when my numbers get low,later on they took that terrible tube out i was pretty much out of it ,and i kinda feel like none of this really happened because here iam at home feeling pretty bad and dont know what to do but to writ thanks guys for everything im really exhausted and of course as soon as i got home the girls were here waiting my mom or sister wouldnt keep them so I pray God gives me strength to take care of them,theyreally dont have anyone but me ,well imsorry if i wrote so long i feel this is the only place i can really let it all out and know that others are praying and are with me and also i can hardly talk that dang tube has tore up my throat i can barely say one word without it hurting
THANK YOU EVERYONE I PRAY THAT GOD BLESSES YOU THIS FORUM AND ALL YOUR FAMILIES BECAUSE I KNOW HE HAS BLESSED ME I"M STILL HERE TO LIVE ANOTHER DAY WHETHER ITS BORROWED TIME OR GODS I KNOW HE HAS A PURPOSE AND EITHIER BY GODS HANDS DIRECTING DRS HANDS OR HIS HANDS WELCOMING ME I KNOW IT WILL ALL TURN OUT SO BEAUTIFULL!!!! love nicole

 

[Nancy]

Hi Nicole-

I'm so glad to see your post, but sorry that you are feeling so poorly.

Am I right that you will be seeing your doctors at Duke this Friday? My guess is that your condition is overwhelming to the local hospital you were taken to and they were just sort of stablizing you until you get to see your specialists, whom you really, really need to see. They probably didn't want to do anything fancy because they don't have the type of equipment that Duke would have. I'm sure you need special lab tests and other tests to put your diagnosis to rest. Not every hospital is so equipped.

Don't listen or take any stock in what you were told about what the specilists can or cannot do. They are the ones who will make that decision.

Right now, you have to hang on with every ounce of your being until you can see the specialists. That is where you need to be. I hope this time they will keep you there until you are finally straightened out.

I know you are a private person and not given to asking your neighbors or others around you for help, but at this time, you will have to. Tell everyone you know where you are living, just what your situation is and call the department of social services if you can, to see what they can offer. You may need extensive treatment and you will want the children to be in a safe environment. We can offer emotional support, but the people where you live are the only ones who can offer physical help with child care or other things that you might need. Maybe someone at the girl's school could help. Try the guidance counselor. They have many different resources available.

 

[MelissaM]

Hi Nicole,

So glad to see your post. Sounds like you are in a world of hurt. . .and pretty overwhelmed, to boot. Bless your heart for having the strength to take all of this on. The illness by itself is enough, but then to have the worries of your girls and your other issues is a lot.

Nancy is right - we are right there for you with information, emotional support, and lots of prayers. But being scattered across the country, we are not in the best position to provide the day-to-day support that you are needing right now.

If there is a trusted friend or church member that you could ask to look into your local resources, please do so. Right now, you may not be in a position to do the research yourself, but I bet there is someone locally who could help. Ask everyone - ask people your church, ask your doctors about resources, the school counselor, etc. "Ask and you shall receive".

As for being sent home when you still feel bad - sometimes that's what hospitals do. They get you to a point where you are stable enough to be discharged, then let you go. It is up to you to watch your condition and make the call if you are getting worse. If you start taking a turn for the worse, GO BACK IN. Seriously. Don't wait. If your doctors at Duke haven't been contacted, be sure to call and let them know what has happened.

Hang in there Nicole!!

Melissa

 

[Christina L]

Nicole,

I am new on this board and have just had my surgery scheduled officially for November 5, to have my mitral valve repaired or replaced.

So, I know how you are feeling during the wait, but I cannot comprehend what you are dealing with personally, physically and emotionally right now with your family and other issues.

All I know is that attitude and faith is EVERYTHING - just put one foot in front of the other and take each day as it comes. I can see that you have a great faith in God. Walk on with His hand in yours - just walk on - but also take care of yourself - that is the first thing - then your girls and all else last.

So easy for me to say all of this, I know, but just trying to help. You are in my prayers and thoughts.

Sincerely,

Chris

 

[tiggerangelgirl]

feeling better,gracias!

feeling better,gracias!

thanks again for all your words and support ,i dont feel so overwhelmed as i did ,i guess it takes afew days to get a big scare out of your system.God always pulls through i even feel a bit stronger today and not so fearfull and down in the dumps i know one thing for sure is i think anytime you deal with a sickness ecspecially your "ticker" you get so emotional and scared when something goes wrong but i know thats what alot of us have to deal with the ups and downs,emotions sure do run all weird and stuff when your in this waiting game.
Christine how long did it take for you to wait for the final get go on surgery,did you have to push the issue at all or be very upfront with the drs,see this is very knew to me allthough my regular cardioligist had know for years that my valves had beenregurgitating and then he found the difference in my murmur and knew that they were worse and needed to be fixed so he sent me to duke to have the surgery and here the drs are wanting to do all those tests all over again,this is what confuses me i know thatr my symptoms have worsened and my cardiologist knows the only thing to do is surgery ,i dont understand why the duke drs are piddling around,is there something else some one could reccomend to get this process speeded up,shouls i call my regular cardio and tell them duke is stalling and see if he has any pull on the situation,well just looking to feeling better and i want to do it as soon as i can im so ready to live life and to get on with things,thanks everyone for the support,yes i do have alot of support here at home from my church friends and community and just when you go through a close call your emotions get all jumbled up and you whine a little then get back on that horse and start fighting again ,ill keep everyone posted i have a followup on friday and duke and i will be going in there with a strong will to get things done

 

[MelissaM]

Hi Nicole -

Glad to hear things are starting to settle down emotionally for you a bit. You are right - life threatening illnesses are SCARY! You are an amazing person for addressing yours head-on and getting some help on this forum.

Don't even think twice about having the same tests run two or three times - it just happens that way. Even if you have had tests done before, doctors like to have the most up-to-date information possible. Also, the way tests are done and the results sometimes differ from place to place. This is especially true for echocardiograms. I have echo reports from five different hospitals/cardiologists and ALL of them are slightly different. So Duke needs these tests in a format that THEIR surgeons understand and are used to. Which means you will most likely have to repeat the tests.

Hang in there and keep us posted!

Melissa