Leak?

[novam vitam 117]

Thank you. This has been so hard for me. Even more challenging now that I don't feel like I can ask my dr questions about my body and new life. It's a bummer deal. I am hoping this other surgeon will take me as a patient for my follow up care. I really need people who can support me and be helpful right now. How's your journey going?

I am still pre-op. I am having my procedure at the end of this month. I hope you're doctor comes to her senses and acts decent.... I can tell by your posts that you present yourself and your concerns in a rational manner (even though you have every right to be irrational at this point)

[tparkerc59 334]

First off, you are an amazing woman and mother! I am so sorry you are having a leak and I hope the rest of your recovery goes as smoothly as possible. Your bright spirit and positive attitude are so inspiring. I will keep you in my daily prayers. Good luck with your talk with your doctor. I think she is probably freaked out about the leak...but that's no excuse for bad behavior. God be with you and please keep us posted.

[iggychic 1,405]

I'm sorry to read that you are still going through all of this Sannah. It's been too long of a road!

I'm also glad to read you're going to talk to your doc, but please don't hesitate if she does not change immediately to change docs. Changing docs saved my life. I don't know how much longer I could have made it given the care I was getting from my first doc. Fresh eyes aren't a bad thing, especially given all of the complications you've gone through. The fact that anyone would tell you that a question you ask is stupid concerns me. Arrogance has no place in medical care and yet so many doctors and nurses are full of it! You have a right to ask stupid questions all day long if you feel the need And your doc should shut up and answer them with a smile on her face.

I got so beat down when I was at my worst and I know that I wasn't an easy patient to deal with. I was SOOOOOO worn out and so worried about dying far from my son and husband that every time the poor docs would come to my room and ask how I was I'd start bawling This from a girl who is well known to have a heart of steel. I never cry! But a body can only take so much before you give in. I told my girlfriends I'd kind of lost "myself" during the process which was entirely true. It wasn't until they finally fixed my leak that I found me again. BTW my docs prefer not to use stents because of the pain they cause a patient. Instead they use a devise called the "claw" which is literally not felt in your body and in early cases is really successful. In late leaks (like mine) it's much less so, but they decided to go ahead because they felt that the risks of a stent and all of the continued care required might cause me even more difficulty (ie your heart issue etc). I love that little claw It worked for me and saved my life. I went from being horrifically sick to being well in a couple of days, though like you my energy was literally gone. I could barely walk when I came home but every day got better.

My son suffered due to my complications. He's still scared I will "go away" again for a long time so when I travel he asks me not to go to the doctors because they might keep me far away from him I'm glad your little one is smaller than that so she won't remember this and have that worry. I know it must break your heart, as it did mine, to not be able to care for her.

WHen I was going through all of this I posted on VSG almost daily. I found great support from many people here (and the standard, you must have made this up crap as well, but not too much of that). I wasn't always strong enough to post, but I'd sit in my hospital bed at night and read the kind comments from these strangers across the nation and they helped me, more than I can say. I'm glad you're reaching out, and maybe hun you could do that as well...just keep this thread going with your daily updates until you feel you've found Sannah again Whine, ask stupid questions, scream, yell and cry here and we'll do our best to help you. I had a loving family at home and many dear friends and they did help, but I also felt I had to be strong for them and here, I could just say what I felt without judgement. It helps hun. You're in my thoughts! Now go drink a Protein shake

[Sannah 258]

First off, you are an amazing woman and mother! I am so sorry you are having a leak and I hope the rest of your recovery goes as smoothly as possible. Your bright spirit and positive attitude are so inspiring. I will keep you in my daily prayers. Good luck with your talk with your doctor. I think she is probably freaked out about the leak...but that's no excuse for bad behavior. God be with you and please keep us posted.

Hello,

Thank you so much for your kind words. I read them and it allows me to feel good. I am so thankful to have your support. The road has been long and I am getting by. After reading of all of this support today for the first time I was able to feel like I will be okay. I hope your journey is smooth sailing!!

[Sannah 258]

Hey Iggy,

Thanks for writing. I can say today is the first day I have felt that I will be okay. I think its because I am able to chat with other leak survivors.

The hardest part of this for me is not being able to nurture my daughter like I would normally. You're a Mom and it sounds like you know and understand what I am talking about. I believe your son is school aged. My daughter is 16 months old. I pride myself is being able to care for her. I want to nurture her, be hands on and grow with her. My Mom, sister and husband have done an amazing job at caring for her. I know later in life she wont recall this time period, but it just wears on my heart. I cry a lot because I miss being able to care for her. I want so badly to be healthy enough to do everything I need to with her... but for now its pretty painful for me. I am most certain you can relate. I am so sorry to hear your son has suffered through this ordeal. I can only imagine the poor guy and how he is feeling.I hope as time passes he heals with you. Your here to stay with him!!!

I am so happy to hear you were able to have the claw and not endure the stents. The stents were miserable to say the least. I had two stents for 6 weeks and then I was supposed to have another procedure to have the claw put in place. I woke up while the surgeon was physically pulling both stents out.. It was very miserable... I wish this on NO ONE....

I completely relate to feeling like I lost myself. I feel so lost and broken and I am starting to have moments of hope. I think this forum as really been the main reason I am feeling good today. What a relief to talk with someone who has been here.

Tomorrow I am going back to day treatment for nourishment. I was going everyday and it would take five hours. I am now going every other day. I don't know when I will be able to nourish my own body.

My dr has been so rude... It was just this last appointment. I am going to talk to her about my feelings and how I have been treated by her. I am talking to another surgeon already.. But I want to make sure I have care before I leave... I don't want to burn a bridge if I don't have a back up plan. However, someone who works for the hospital is now advocating for me. She feels it will be no problem for me to transfer care. My advocate said I have start the process.

I have been taking a few breaks a day to listen to some music and to be present with all these emotions. I have my family, friends, husband and I am so thankful for them. But sometimes I feel like I need to check out for some music therapy. Sometimes i am not sure where to look for strength to push on. But I cant help but to look at my baby. I want to be here for her.

My leak didn't present with typical symptoms. I had a dull back ache. For a few days now my back is hurting and this cares me. I am sensitive because I have endured so much. I realize there are so many reasons I could be feeling pain in my back. But I am paralyzed by fear, afraid to tell the dr or nurse tomorrow of my pain. I ended up taking pain medicine tonight... I have not taken any in a while.I have to tell them, because I have to be safe... but I am scared of more swallow studies (Its rare but i am allergic to the clear liquid they use), so they give me tons of benadryl and keep a dr near by. My face goes numb, and i get light headed- like i may pass out. I am trying to focus on the positive. I don't have a fever and I only vomited once today.

I have lost 60 pounds, but it doesn't feel good. I worry about my heart. I have never had heart trouble... I started collecting Fluid on my heart and then my blood pressure went crazy. Currently I am taking 10 pills a day for my blood pressure.. its insane... who does this? it scares me...my heart has started to beat irregularly... I have no idea why this is happening...

So a few good things.. even though it doesn't feel good 60 pounds gone is great!! My Silky Terrier can now sit on my lap. I am learning a lot about myself and how strong my friendships and marriage is. I am surrounded by truly amazing people.

Thank you for writing, listening and allowing me to feel like I am okay. My family and friends are so compassionate and loving... I can not deny this.. but I need to talk and relate to someone who has done this and been to the bottom of this pit.

Wishing you only the best!

Best,

Sannah

[iggychic 1,405]

Oh Honey I just want to reach out and hug you! I know all of those fears and emotions far too well. I had a pain in my arm where the picc line was and kept quiet about it for a few days until the pain became unbearable because I was so scared of being poked again! A little needle, but you get to where you just can't take any more pain...not a tiny bit of it. I TOTALLY get that (and I had a blood clot forming so that was stupid of me). You tell them about the pain just to be sure hun because if, god forbid, there is an issue you'll want to deal with it now because you know it will get worse, not better later and you need to be done with this stuff!

Is it the barium you're allergic to or the clear liquid? You could ask for the barium they give to babies. It's in a white paste like liquid that I found much easier to get down. Neither tastes good, but I kept throwing up the other one. If it's just the suspension liquid than changing to the white one might help??? If it's the barium, ya that sucks, but honey you need to do it just in case right? I'll hold your hand mentally while you're there...or poke you in the butt to keep you upright which ever you need.

My son was six when I had the surgery. I can relate to your pain in not caring for your baby. I remember a week or so after surgery I just wanted to do his night bath so badly I drug myself out of bed and ended up passing out in the hall on the way to his bathroom where grandma was with him. I broke down for the first time and just bawled and bawled because I so needed to be his "mom" not some sickie stuck in the guest room down the hall. He'd come in my room after school and I so desperately wanted to cuddle with him, but even a few mins wore me out so I just got to see him for a few, then at night for a few, morning for a few...gad I cry thinking about it now. My DH and grandma and his nanny helped me so much as well as friends, but a good mom wants to be a mom It's so hard not to be able to. He also has a feeding disorder and I'm his primary therapist now, and that went way backwards when I couldn't work with him. That sucked

At my lowest point, I never wished I'd die, but I remember thinking that I wished I didn't have my son who needed me, so that I could give up and just be done fighting for life. Not a good place to find yourself at all And that made me cry LOL If someone would come in to my hospital room and say "oh it's a gorgeous day outside" I'd burst into tears because I was spending another gorgeous day in that damn hospital away from home Or if they asked about my son's drawings, or a painting a friend brought me...gad if they asked if I wanted Soup I'd probably have burst into tears Poor things!

But darling you have admitted you are getting better right You can't put this experience behind you, but you can look forward to it fading as you take each positive step, even tiny ones like every other day feedings are positive. I know it's tough but you have a reason to be strong right Come here and tell us if it's too much and we'll be here for you every step of the way.

Dawn

[Sannah 258]

The PICC line is miserable. When it was installed, they went too far into my heart. It was real hard to cope with. I am happy to now have just a midline. I can't wait to have the midline out!!! That will be the day!!!

I am allergic to the clear stuff that is used for the swallow study. Barium I can handle. I don't like being loaded up on Benadryl for the swallow study. It's just not ideal.

I am sorry to hear your son had to go through all of this. I am thankful to hear that he has his grandma and dad around. It's so hard on the kiddos!!!

I am having a brain problem. I just read your message and went to reply and can't remember everything you wrote and I wanted to reply.

I think it's a good idea to get the emotions out. Thanks for being here!! The road is rough and I am doing all I can. I get to see the crazy dr tomorrow. Yay!!!

I have decided I am going to follow up with the cardiologist. I have never had heart problems until this surgery. I had the Fluid on my heart. Then high bp. This is all so new to me. I am on ten pills a day for my heart. It's weird and I don't like it. I need to learn why all this is happening. The waves that they measure in my heart are off. I had this surgery to get healthy and improve the quality of my life. Right now I don't feel better.

I hope your day is good!

Best,

Sannah

[iggychic 1,405]

The PICC line is miserable. When it was installed' date=' they went too far into my heart. It was real hard to cope with. I am happy to now have just a midline. I can't wait to have the midline out!!! That will be the day!!!

I am allergic to the clear stuff that is used for the swallow study. Barium I can handle. I don't like being loaded up on Benadryl for the swallow study. It's just not ideal.

I am sorry to hear your son had to go through all of this. I am thankful to hear that he has his grandma and dad around. It's so hard on the kiddos!!!

I am having a brain problem. I just read your message and went to reply and can't remember everything you wrote and I wanted to reply.

I think it's a good idea to get the emotions out. Thanks for being here!! The road is rough and I am doing all I can. I get to see the crazy dr tomorrow. Yay!!!

I have decided I am going to follow up with the cardiologist. I have never had heart problems until this surgery. I had the Fluid on my heart. Then high bp. This is all so new to me. I am on ten pills a day for my heart. It's weird and I don't like it. I need to learn why all this is happening. The waves that they measure in my heart are off. I had this surgery to get healthy and improve the quality of my life. Right now I don't feel better.

I hope your day is good!

Best,

Sannah[/quote']

So hun if you take nothing else from these posts...please understand that there are TWO types of solutions for barium swallows! They give a white colored one to babies but that can also be given to adults (It's what I get). You don't have to have the clear stuff!!! Then you can avoid the benedryl etc. Ask for it and if they don't have it (I've never been anywhere that didn't) ask them to order it in for you. You have enough issues without having to deal with the allergy thing (I can't believe they haven't brought this up????) Anyhoo, it's white but does exactly the same thing as the clear. They can't get babies to drink the clear stuff Smart babies (My son has had many of these).

And good for you on the new heart doc. That's scary stuff and I'd want to see a specialist.

You will get better dear. I'm currently making 25 costumes for the wizard of oz....you will join me soon right?

Dawn

[Sannah 258]

Barium!! I can so that!! I will advocate for this!!! My body can't handle too much more. It's been through a lot!!!

Yes!! I hope to join you soon!!! 25!! A little play?! Sounds like fun!!! The Wizard of Oz one of the best classics.

Do you eat food now? Did you ever chew and spit?

[iggychic 1,405]

Barium!! I can so that!! I will advocate for this!!! My body can't handle too much more. It's been through a lot!!!

Yes!! I hope to join you soon!!! 25!! A little play?! Sounds like fun!!! The Wizard of Oz one of the best classics.

Do you eat food now? Did you ever chew and spit?

Even chewing and spitting sends stuff into your tummy that you shouldn't be getting there, and when I was no food I was also in the hospital, so I never did. I don't think I would honestly, I didn't miss food at all when I was sick.

Oh and I just cut out six twinkie costumes. You remember the scene where the twinkies sing about their fluffy white frosting filling right? Ya me either....I think someone has taken a bit of poetic license with the play LOL

Barium is what both of those nasty liquids have in them. You want to ask for the white barium suspension they give babies. Make sure you say it that way or they'll just give you more of that clear crap!

[iggychic 1,405]

Oh and ya I'm allowed everything except fruit and vegie skins and tougher vegies and lettuce. I have to wait for six months from the last surgery for those. I dream of cesar salad LOL who'd have thunk it!

[docbree 199]

Wow, Sannah - my heart goes out to you! I'm glad there are people on this site like iggychic who've been through similar circumstances and give such wonderful support and advice. I am rooting for you! (((Hugs)))

[Sannah 258]

Wow' date=' Sannah - my heart goes out to you! I'm glad there are people on this site like iggychic who've been through similar circumstances and give such wonderful support and advice. I am rooting for you! (((Hugs)))[/quote']

Thank you so much for your message and being supportive. These leaks are so hard!!! I hope that your journey is nothing like line. Where are you this process. Are you feeling good?

Best,

Sannah

[NORCALRN 60]

you have had quite a rough go...i can empathize that is for sure. i remember the TPN,PICC line being awful (diarrhea aaaalllllll the time) then j tube which was better. i know that those of us who had, or currently going through complications - well,it will get better. it just has to!!! My NJ tube stays til 2-25-13 then the J tube goes back in thankfully. keep us posted please!!! remember-you are amazing!!!

[Sannah 258]

you have had quite a rough go...i can empathize that is for sure. i remember the TPN' date='PICC line being awful (diarrhea aaaalllllll the time) then j tube which was better. i know that those of us who had, or currently going through complications - well,it will get better. it just has to!!! My NJ tube stays til 2-25-13 then the J tube goes back in thankfully. keep us posted please!!! remember-you are amazing!!![/quote']

I am sending a big hug to you!! Sounds like you enduring too much. I am sorry to hear of this. These complications are just too much.

Since surgery I have developed an irregular heart beat, high blood pressure. And Fluid had collected on my heart. Today I got a call the doctors are worried my bp is now too low. I can't win or seem to find the right balance.

Thank you writing and being supportive. I would love to hear how you progress.

Best,

Sannah