I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: deniferfer on November 08, 2012, 11:59:18 AM
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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.
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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.
:grouphug;
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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.
:grouphug;
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so sorry to hear this, hope it gets sorted soon.
lots of love Cas
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:cuddle; That's just too much!
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That sounds awful. I hope they can help you soon.
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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
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so sad to hear this. hope to hear from you soon.
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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 :rofl;
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.
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Good luck tomorrow honey,
love Cas
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WOW! I hope you feel better soon.
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Hope you're feeling better bu now...you had a very scary experience, it seems!
Ricki
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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! :'(
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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.
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deniferfer Sorry to hear about the pending surgery. Hey we share another similarity - beside kidney failure we are both adopted. :2thumbsup;
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
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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
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Best wishes.
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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!
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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 :kickstart;
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@ 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
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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!
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@ 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
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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.
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@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! :2thumbsup; 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.
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Wow what a shocking ride! Maybe it was lucky you got the peritonitis so that that they found the cyst and the heart!! :cuddle.
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deniferfer, I have just caught up with your post. You poor thing, you are going through the mill, its one thing after another. You are sounding positive even though you are probably beside your self, peritonitis is bad enough with out the other things going off, but it sounds like you have a good team on hand , I am sending lots of hugs to you, you will be OK. Keep us informed.
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when i was faced with the reality of going on hemo, i was really upset, and my hubby was reminding me of all the things that would be better.
i wouldnt have to worry about it, just go in they do everything and leave no worries
i ddnt have to set up the machine every night
4 days of the week i could pretend to be a normal person
could do anything i nthe middle of the night
no worries of peritonitis
there were more but cant think of them off the top of my head.
i wish the best for u, no cancer and u get all cleared for everything. and this is just a speed bump
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Hey guys, I got the next update
Well after a very long two weeks to wait on blood test results for cancer.....IT'S NOT CANCER!!!!! That was the best news I could ever hear!!! I spent most of the night before just up and thinking. It was scary and nerve racking to think about! so it was a HUGE relief to hear I was in the clear. But I'm not outta of the woods yet just beat the Big Bad Wolf! Next I have to get a note from my DR and the cardiologist to clear me for surgery and the OBGYN can perform it. I go to the cardiologist monday for more tests and Tuesday to see him. Yhem my dr I can just walk in. My hope is to get this all done in the next 3 weeks before my next cycle. I don't need the ovary to flare up again and make another infection!!
Thank you everyone for your support!! It has given me a lot of the courage to be able to get thru this!!
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That all sounds so good, what a relief for you.
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glad to hear your good news Denifer
love Cas
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deniferfer I was adopted at birth. Just wondering have you thought about or tried to find your birth mother/father? I had no desire to look, but then was contacted by a sister. She too was adopted and began the search. Turns out our birth mother finally married and a had nice large family. I also found out that my birth mother was raped at age 12 and I was the result. So between that and my not really wanting to know more, I never met my birth mother and she died a few years ago.
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Hi Grumpy, My mom & dad got me at 3 days old and I was adopted at 1 in a half. I really have never had any interest in meeting my birthmother. To me she gave birth and that was it. Actually my mom knew her thru the church that my parents were going to at the time and when I was born she asked my mom if she wanted me. The story behind me is that she didn't know she was pregnant with me until she went into labor. SURPRISE its not back pain!! :rofl; My mom asked her about who the birthfather was and she came back with 3 different guys cuz she had no idea. She kept in touch with my mom off and on and would keep her updated on what was happening in her life. I have 2 half sisters and they stayed with her and had a VERY hard life. So I have always thought I was lucky I was adopted and that my adoptive parents are my real parents cuz they have been the ones there for me and still are.
Do you keep in touch with your sister still?
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Deniferfer I had no interest in finding my birth mother either. Why I had the perfect parents. They were 40 when I came along and well set in life with Dad owning 3 grocery stores and Mom a stay at home wife. ( in the 40s and 50s). Dad grew up in the depression of the 30s and had to work to support the family after his dad abandoned the family. But he had more street sense and common sense than any one I knew and I learned a lot about life from him. Grumpy
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Deniferfer, I am just reading about your hospitalization for the first time and I'm in total shock. At the Vegas trip I drove back from the Olive Garden with you and your mom and sister. I just remember thinking what a nice family you are. I'm so glad to hear that the cyst was benign. You poor thing, you've been through hell.
I've been doing in-center hemo for 2 and a half years now and it's really not so bad. Four days out of the week you don't even have to think about dialysis. If you can bring a laptop or tablet with you to surf the internet, it helps alleviate the boredom a lot. Get one of those mobile wi-fi devices if your center doesn't have wi-fi for patients. (All this is assuming you end up doing in-center dialysis, of course.)
You'll get through this, just keep fighting the brave fight.
:cuddle;
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I know it has been awhile but here is a update of what has been happening.
Well the good news is the cyst wasn't cancerous!! That was a huge relief on on my part!! But I ended up getting another peritoneal infection and the dr said it was most likely in the tube itself. So they had me go in to have the perma catheter place in one day and then then next day They had me go to the hospital and removed the PD catheter. Then the next day have me started on HD. Mean while they also had me on IV medication to get rid of the peritoneal infection. I have been slowing learning the ropes of HD and it is a different ball game compared to PD. There were days I would feel so bad going in and was over loaded on fluid. Then I would leave feeling wiped out. I nick named my D center the bar. Cuz you going in feeling OK and 3 hours later leave feeling wiped out and have what I call D hangover. :rofl; I was pretty proud this last time I went and only gained 2 kilos. I'm starting to get this down!!
Well I start to plan to get the cyst remove and move forward it this crazy mess when I was hit with a bit of a bomb shell. Cuz my heart is only working at 30% there is a risk something can happen during major surgery and I could die on the table. The Cardio want to place a pace maker/ defibrillator to protect my heart. So i went and talked to him on Wed and he explained to me why it was needed it and he could also use it to help shrink back down my heart. My heart rate is normally low so her could use this to raise my heart rate and be able to give me stronger meds to shrink back down the heart. So i agreed and next wed I go in to have that done and they will have to keep me in the hospital over night to see how i do and make any adjustments. it sucks that i now have to have another procured and it has push back my cyst surgery back a couple more weeks. But I know i need this and it is going to help me in the end. Once I get all this done and I want it to heal a bit I can get back to working the major thing. Removing the cyst/ovary. I have continued to tell myself this is all a journey and I have been placed on this journey for some reason and I'm getting to see a different side of D and can learn that. God only gives us what we can handle right? Well sometimes I think god is seriously over estimating my abilities!! :rofl;
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Great to hear that it isn't cancerous! :clap;
I was sent to a cardiologist as a routine before a procedure last year. I was also told that my heart was only functioning at 30%! He put me on Coreg and it has helped raise the function some. There was never any mention of a pace maker for me (Thankfully!)
I hope all goes well and you can get this taken care of and behind you.
Have you thought about home hemo? I just started in September and I love it! I feel so much better. I don't get the "hangover" now.
Will keep you in prayer! :pray;
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Keeping you in my thoughts and prayers. :grouphug; :grouphug; :grouphug;
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Good on you for getting your gain down to 2kg. Thinking of you, hope the bar turns into the local cafe soon.
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Wow, I must have been asleep thru most of these posts. Oh, no, wait, I was in the hospital the same time you were, also for the first time in 5 years. Punctured Diverticulitis. Man, did that ever hurt. But I was able to talk the Dr. into letting me try massive antibiotics rather than the radical surgery and haveing a bag put on me for 4 to 6 months. And that worked for about 3 weeks and I felt fine and got upone morning and the pain was back. So, more antibiotics, and so far, so good. but, enough about me, I just wanted to let you know I love your attitude and I hope it all works out for you in the very best way. :pray;