Stayed out of the hospital for 5 years till now!!!

[deniferfer]

      I just spent 6 days in the hospital, just got out monday night! This happen completely happen out of the blue!! On Halloween morning I woke up to major pain in my tummy and of coarse I was like of great peritonitis! But what was odd I was fine just the night before and just got off the machine. Normally if that happens it in the middle of the day. So I call m nurse and tell her this is odd and I'm in a lot of pain. She tells me to come in right away. The pain is now getting worse and I'm barely able to walk. I live alone and say  to myself I got to drive to the dialysis clinic(about a hour away and I will be fine. Just need some med. (that was not a fun drive to say the least!) I get there, I already had a simple and they look and there is a bit of blood in the bag. They ask when my when did I get off my period and I say a few days ago. They say to  me this is not good! My dr is outta town and the dr on call is not getting back with them to even get me meds. She tells me I need to go to the ER and by this time I'm getting very sick and dry heaving beyond control and there is no way i can drive!! I call my mom and she takes off work and comes and gets me and takes me to the ER.

    The dr on call is still nowhere to be found! They can't do anything for me until a dr makes a order. Mean while I am still dry heaving and in a mass amount of pain!! Finally they get orders to draw blood and can give me pain meds and a nasusa med. The nurse shoots the pain med into my IV and with in mins I'm sent into loopy-ville! My mom looks at me and says you need to lay down. Well I go out like a light..4 hours I wake up again and they tell me your probably going to be admitted. I'm like what just get med for my bags I have does this before. But they tell me no we need to run a lot of tests. So I see the on call ER doc and then they give me more pain meds and knock me out again. I was barely focus enough to say my mom could sign for me. 8pm that night they get me into a hospital room.

   They start doing PD manual bags on me cuz the hospital has no machines. They load me up with both meds in the bag and meds in my IV. The next day I find out my white blood count is at 2000 and went up from 1500 over night. They are very worried!! They start ordering all kinds of test.  I will be honest i don't remember each day. But here what it all comes down to...After blood work everyday at 4/5am, 4 IV changes, cat scan, and heart monitor, and echo....They said my heart is working at 30%, I have a murmur, leaky valve and the cat scan showed I have a ovarian cyst and to top it all off a major peritoneal infection. I now need to go to a heart dr and a obgyn. I scared half to death. I went from being what i thought was just fine and my drs poster child to now a new set of problems to deal with.     

 

[Sydnee]

wow, sounds awful.
the cyst could be what caused the pain. I had a cyst on my left ovary. 2 years ago they removed it because of the horrible pain it caused they removed it ovary and all.

Hope your team figures out what to do for you quickly.
  

[Poppylicious]

Oh gosh, deniferfer.  I knew you'd been in Hospital but your Fb status's didn't make me think it was half as bad as this.  Sending you oodles of *huggles* that you see the best docs and they give you the best meds and get you back up and running properly again soon.

 

[cassandra]

so sorry to hear this, hope it gets sorted soon.

lots of love Cas

[okarol]

  That's just too much!

[jeannea]

That sounds awful. I hope they can help you soon.

[Grumpy-1]

deniferfer  I would bet the pain was peritonitis.  The pain starts in the lower area and moves up - VERY QUICKLY and by your description, and from having it twice - HURTS LIKE HELLLLLLLLL.   As you know, it can be treated, but maybe the more important point is that they found the heart problem.  That untreated could have lead to more serious issues.  Glad you are feeling better and keep tabs on the heart.  Grumpy

[ceb3370]

so sad to hear this.  hope to hear from you soon.

[deniferfer]

Thanks guys for all you hugs and support.

@ poppy I know I din't put too on how bad it was on FB only cuz that is more pubic and i feel safer telling people here. You guys are like my 2nd family and here for me.

@Grumpy-1 Yes it peritonitis and this is one of my worst episodes with it.  Cuz a mix of different things that happen I didn't catch it and now it bad. So normally after a couple of days on meds and I'm better. but i'm still having a bit of pain, mostly at night right before I get on the machine. No fun!! Man I miss the pain med at the hospital!! JK JK   

Right now the only update is that tomorrow I see my doctor and get her plan of action. I'm so scared of what she is going to tell me and part of me hopes they read everything wrong and that it can be easily fixed with like a pill.

[cassandra]

Good luck tomorrow honey,

love Cas

[kitkatz]

WOW!  I hope you feel better soon.

[Ricksters]

Hope you're feeling better bu now...you had a very scary experience, it seems!

Ricki

[deniferfer]

Saw the Dr today and its not good news. The cyst is so big that is has to be surgically removed. The doctor says I have to get this done as soon as possible, she whats to make sure it is not cancer. Also she doesn't want the transplant team to find out. If they find out that I may have cancerous cyst they will pull me off the list and I will start all over again from the bottom. She has also ordered some lab test to check my genes. Cuz I'm adopted I have no idea if cancer runs in my back ground or not. Oh as for my heart she is no too worried about that but is going to send my to the cardiologist and get clearance to have the other surgery.

To say the least I'm not happy, scared and overwhelm!! I know its a easy surgery per say and I'm going to be OK but not at all what I want to do! 

[Simon Dog]

Best wishes for a speedy and complete recovery.

Once you get past this episode, I suggest you see if you doc will give you meds so you can start peritonitis treatment yourself - that way, when you get to the ER or clinic, you'll already be full of antibiotics.   My neph. gave me 2g vanco/1g ceftaz with instructions to do manual fill/drains with cold bags, then fill with a bag with the meds added for a 6-8 hour dwell - but, I would expect to be getting direct medical attention before that dwell was over.   This approach will let me get treatment started within minutes, rather than hours, of a cloudy bag and pain.

[Grumpy-1]

deniferfer Sorry to hear about the pending surgery.  Hey we share another similarity - beside kidney failure we are both adopted.       

Simon Dog  - after spending a week or so in the hospital full of pain meds and finally antibiotics - they sent me home with vanco too.  That finally took care of the infections.  I now have a nice supply of vanco and at first sign of infection, I'm using it.  Grumpy

[cassandra]

Sorry to read your news Denifer, but glad you have an understanding Dr.
I wish you all the best with your surgery, and hope of course that its not cancerous.
Glad to hear about your heart though.

Best of luck, stay strong, and lots of love Cas

[BobN]

Best wishes.

[WishIKnew]

denifierfer      - wow, just catching up with this thread.  so sorry for all of this.  Hope they get that pesky cyst our and it is nothing! And I hope you are feeling better!

Just to alleviate a little of your fear, if, God forbid, it is cancer and they treat that you will still be on the transplant list and accruing time, just not active - as in they will not transplant you until the cancer team clears you, but you would not have to start over on the transplant list.  I was listed in Nov of '07.  Diagnosed with breast cancer in June of '11.  Given the all clear from my cancer doctor in Dec. '11 and transplanted just 1 month later.  I didn't think it could happen that way, but it did.  So, hope everything is cleared up quickly and there is no cancer ay all!  Hang in there!

[lmunchkin]

Denifer, holding you up in prayer, girl.  You have been through so much!  Hope you get to feeling your ole self soon!

God Bless,
lmunchkin

[deniferfer]

@ simon dog, Thats a great idea!! I will talk to my dr about it and if this happens again I could get a jump it.

@grumpy-1, That is so neat you are adopted too!! How old were you when your family adopted you? I was just a year in a half.

@WishIknow, That helps me a lot and that I don't need to lose hope if worst case it ends up being cancer.

Again thank you everyone for all your support and  being here for me.

Newest up date...

went to see the cardiologist and my heart is enlarged and is working harder then it should be. But he is going to try and shrink it back down to normal size with some medication. He doesn't want to have to replace the valve unless he has to. Then went to the OBGYN and he sent me for more blood work to see if there is a chance it could be cancerous. Then I will have to see a different doctor. Sadly that  the cyst is so big he is going to have to remove the whole ovary on my left side. But I'm OK with that. It needs to be done. Right now thou I have to wait 2 weeks for the blood test to come back. Figers crossed its all alright and he can do the surgery.This is going to be the longest 2 weeks ever!! The other thing that was just put on me is that after the surgery I will have to be placed on hemo for 2 months. That really sucked! I'm not trying to put down hemo I just like PD better for me.

I am not letting this bring me down and I'm keeping my sense of humor thru it all! In fact I'm already thinking up a list of things I can do on hemo and not on PD... Like staying out half the night!! LOL

[WishIKnew]

You have such  a good attitude.  Have you done Hemo in center before?  What got me through was out portable DVD player and romantic comedies (chick flicks).  I'd get settled in and after a half hour or so I'd pop in a movie.  By the time the movie ended I was at least half way through.  By then I could usually sleep at least a little and usually only had the last hour or so to be bored.  Of course a good book is even better than a movie, but I frequently got too sleepy to read the whole time.

Best of luck to you!

[Lillupie]

@ simon dog, Thats a great idea!! I will talk to my dr about it and if this happens again I could get a jump it.

@grumpy-1, That is so neat you are adopted too!! How old were you when your family adopted you? I was just a year in a half.

@WishIknow, That helps me a lot and that I don't need to lose hope if worst case it ends up being cancer.

Again thank you everyone for all your support and  being here for me.

Newest up date...

went to see the cardiologist and my heart is enlarged and is working harder then it should be. But he is going to try and shrink it back down to normal size with some medication. He doesn't want to have to replace the valve unless he has to. Then went to the OBGYN and he sent me for more blood work to see if there is a chance it could be cancerous. Then I will have to see a different doctor. Sadly that  the cyst is so big he is going to have to remove the whole ovary on my left side. But I'm OK with that. It needs to be done. Right now thou I have to wait 2 weeks for the blood test to come back. Figers crossed its all alright and he can do the surgery.This is going to be the longest 2 weeks ever!! The other thing that was just put on me is that after the surgery I will have to be placed on hemo for 2 months. That really sucked! I'm not trying to put down hemo I just like PD better for me.

I am not letting this bring me down and I'm keeping my sense of humor thru it all! In fact I'm already thinking up a list of things I can do on hemo and not on PD... Like staying out half the night!! LOL

question, how did your heart get enlarged? Is this from long term dialysis?
 Can you go back to PD? If this is only for 2 months going on hemo, think of it as a break from doing it every single day.

Lisa

[Chris]

Sorry I have not kept up on fb. What a time your having right now and sorry to hear. Hope everythiong turn out ok and goes well.

[deniferfer]

@WishIknew I did hemo way back when I 1st started. But I was 15 then and they had video games at the children's hospital. I was a master at Mario go-cart!  But Idk what i would go now? I like the idea of watching the girly movies. I know I have not seen lot of movies that have come out. So before I go in I can run by redbox pick up a movie and be good. Thanks for the idea!

@Lillupie To be honest I don't now how or why my heart enlarged. I didn't even think to ask the cardiologist. My heart was enlarged befor when I 1st had kidney failure so idk if it is just happening again or what. Yes after I'm completely healed they can. So like you said it mite be nice to have a brake from doing it everyday. My mom said maybe we can have a mini vacation just for me to know what it is like to only worry about me and not the machine too.

@chris No worries, I have not been putting everything on facebook only cuz it is public and I feel safer on here.   

[natnnnat]

Wow what a shocking ride!  Maybe it was lucky you got the peritonitis so that that they found the cyst and the heart!!    :cuddle.