Keep praying not any better!!

[NascarfanMary]

Hello,

I still am around but not posting. Keep me in your thoughts and prayers. I am extremely tired and so much has been going on with my health. I really need to have my pacemaker fixed. The pain is so severe and has been for a while. I have low potassium, low magnesium and electrolytes are a mess. I can't even hardly walk. I have been in the hospital for the potassium with IV's and medicines have been changed but still no better. I am tired of all of this and feel as tho I can't go on my longer. The heart failure and cardiomyopathy is wearing me out. I am afraid that there are problems with the mechanical valve also. My body is so worn out. So when you think of me say a special prayer because it is very tempting and maybe easier to just give up. I should be alot better than I am after all these surgeries I had last year!!! Take care everyone. May God Bless You

 

[geebee]

Dear Mary,
I can feel your pain just reading your words. I will keep you in my prayers that you get through this tough time as well as you have the others. Heart problems can be very wearing and you seem to have other issues as well. I cannot begin to imagine what you are going through but I will ask you, as a fellow VR member to hang on. We are all here to help each other in times such as the one you are experiencing now. Please do not give up, just work on getting better so you can pass on your kind words to others down the road.
Let us help you through.
Smiles,
Gina

 

[Karlynn]

Mary,
I'm so sorry to hear you are feeling so poorly. You will definately be in my prayers.

 

[Debrinha GT]

You have mine!

You have mine!

I'm so sorry to hear of your ordeal Mary, but remember, You've gone a long way already and need to keep on trying. I've seen so many posts like that from people who thought there was nothing else to fight for, but they made it in the end and so will you! I'll sure remember you in my prayers! Take care and hang in there!!
Débora from Brazil

 

[ALCapshaw2]

Sorry to hear you are having such problems with your electrolytes Mary. Who is managing your electrolytes? Electrolyte imbalance can certainly cause you to feel as poorly as you do. You may want to request a referal to a good internist or specialist (ask your cardio). Please keep asking for help to resolve these issues and don't give up until you find someone who can.

Best wishes,

'AL'

 

[ericaj]

with you

with you

You are in my thoughts and Prayers. GodSpeed.

Erica

 

[Glenda]

Mary, bless your heart. You have had a lot on your platter. It just doesn't seem fair sometimes, does it? Please don't give up. God loves you and so do I. You will be at the top of my prayer list. Hugs are coming your way.

 

[bvdr]

Mary, I am so sorry. Yes, you will be on my prayer list.

 

[Nancy]

Mary-

So sorry to hear of your continuing problems. You will be in my prayers. God bless.

 

[Eowyn Rose]

Hi Mary

Hang in there I will pray for you.
Take care

Eowyn Rose

 

[Abbanabba]

Mary I'm so sorry to read how poorly you are feeling. I'm sending you hugs and lots of sparkly, positive thoughts. I hope things start getting better for you soon.

Don't give up!! Remember we're all here for you whenever you need us.

Anna : )

 

[gijanet]

Oh, Mary...........

Oh, Mary...........

I've been wanting to hear from you, but this isn't at all what I wanted to read. Your post just radiates with your pain and frustration. I cried just reading it. Please do not give up the ship.

I want you to become more aggressive and seek out someone who can help you. Do not go gently into that good night. I hope this doesn't sound selfish, but my Katie and all other young children with CHDs need you out there blazing the trail. I need you demanding answers and solutions. All adult CHDers are pioneers. I desperately need y'all out there forcing these docs to become more educated about the issues that adults with CHD face. I repeatedly read posts on here from adult CHDers who are fighting for answers, solutions and appropriate treatment. I am in awe of all of you. You are my heroes. By forcing doctors and institutions to "deal" with your issues, you are only paving the road for my Katie so that she won't have to go through the same things that you guys are going through. I just know that there is someone out there who can help you. As I posted to Anna a few minutes ago, you might even start with some of the pediatric heart institutions. Most do not charge for second opinions - and an e-mail to them wouldn't cost a thing. Some might even jump at the chance to "study" you, especially if it is an institution that likes to publish. There aren't too many adults your age with heterotaxy. I would type up one really good e-mail, explaining your medical history and current symptoms and then e-mail it out to ten or twenty surgeons at the larger pediatric institutions. It can't hurt and I bet at least one of them bites the hook. Also express your concern about needing an answer, but are concerned about the expense of an opinion. (THat's what I did when I sought out five opinions for Katie and not a single one of them charged me - except for our local children's hospital!)

Besides all of this, your husband and Nascar (AKA Justin) need you. WE need you. Please don't throw inthe towel. Keep fighting the good fight.

I will certainly add you back to the top of my prayer list. SEnding lots of hugs and prayers. Love ya. J.

 

[bvdr]

Mary, I agree with Janet and in addition to e-mailing I would try to obtain the surgeons' fax numbers. Maybe a snail mail letter that capsulizes the history may catch someone's attention...maybe even all three.