I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: lorilorilori on March 27, 2008, 04:10:32 PM
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Wow! What a lot of emoticons!!!
I am Lori, obviously. My husband is currently receiving hemo as a result of contracting Legionnaires Disease. His body went into pneumonia, which he was convinced was a bad cold with a fever. His body then went into septic shock,and everything was shutting down. He spent 15 days unconscious, during which he had his first CRRT. His total time in the hospital was 27 days. He's now home, and the paperwork chase and fun begin!!!! My husband also now has low blood pressure issues. He was a contract professor with several colleges. We'll see what happens now. They say Legionnaires is usually diagnosed at the autopsy, so that's a hopeful sign.
The neprho doctor is not sure how long this will be. Right now, nobody is talking about an access other than the double-lumen catheter. I have to wrap it in plastic wrap when he has a shower. His liquids are unlimited, and he has a liquid input:output ratio of anywhere from 2.3 to 0.7. He recently did a 24-hour urine collection which yielded 3500 cc out of 3700 cc. And still, he gets dialysis 3 times a week, in the evening, where they take off anywhere from 3800 cc to 1500 cc.
The outsourced dialysis people from the hospital were fabulous, insofar as explanations, etc. There wasn't anything I asked them that they couldn't answer clearly and well. Our daughters and I were allowed in the room as long as we did not get in the field around the access. They were extremely careful of his BP, and stopped and restarted as necessary.
We're not so hot on the dialysis center. They aren't as watchful of his BP, which causes me concern, just in making sure they meet that 3 to 4 hour requirement on the time attached to the machine. They essentially weigh him, hook him up, start the machine, and do whatever else they do until the time limit has been met. The dialysis center did have better sheets with phosphorus and potassium measurements (thanks, PhosLo), and it is clean (you can smell the bleach and chemicals through the doors) but that's about it. They don't want the girls and me in there while he's in process, of course. There is a waiting room, but we only live 6 miles away, so why bother.
So, that's pretty much our life. He does have physical therapy two times a week, and then dialysis three times a week. We do some of the physical therapy stuff at home, and try to keep things normal. The cooking is an adventure, to put it mildly. Never have so many foods been so forbidden!! I know they say the whole family can eat this way, but no thanks. So far, in the two weeks he's been home, the only decent low-everything meal I made was a variant of chilli. I am having a hard time adapting Southern Italian food to a renal diet.
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hello, Lori!!
It sounds as if you and your family have had quite a roller coaster with your husband's illness and subsequent complications.
Ask all the questions you want, rant away, that's why we are here!! That and to have fun, too!
:welcomesign; :welcomesign; :welcomesign;
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:mysty: Howdy
glad to know you but wish it was under different circumstances
go to Davita.com Recipes that will help
your center sounds like mine
good luck
this is not easy on the patient or the family
we will survive :bunny:
hello to your girls
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Hi Lori, and :welcomesign;. Wow, you've been through a lot. There are lots of really great people here on IHD who can help you with all kinds of information and support, so come back often and keep reading and posting -- we'll be here.
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:welcomesign; So glad you found us Lori. Your husband has certainly had a rough time. You both have had a lot to deal with. You sound like you have educated yourself and learning all you can. Your husband is fortunate to have you with him. Looking forward to hearing more from you. Take care :grouphug;
PS We are having a meet up in Chicago (Tinley Park) in August. Maybe you and your family could join us? :2thumbsup;
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Welcome to ihatedialysis.com Lori,
Sounds like you and your husband have been through a lot. feel free to post as often as you want and ask questions. The members here will shoot straight from the hip with answers. Knowledge is power. Your husband is lucky to have you by his side.
Sluff/Admin
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Welcome lori to IHD. My I suggest that your husband tell and I mean tell the tech at the center that he wants his BP checked every 15 minutes and also come to a decision on when it gets to low to have the machine alarm. That number needs to be discussed but, then he will have a better understanding of when he starts feeling strange. Just remember that you (he) are in charge don't let them bully you...
Boxman, Moderator
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lori, :welcomesign; I too am a caregiver. Our stories are sort of familiar, my husband spend 6 months in the hospital in 2001. He also contracted sepsis shock where all his organs failed. They brought him back from the dead. You really need to stay on top of his numbers, not trying to scare you here, but dialysis centers are in it to make money (most of them, anyway). If your husband is urinating that much, you need to demand that his labs be drawn often to check his creatinine, BUN and all his kidney function numbers. If his kidneys can recover, they won't if the dialysis center is drying him out too much and too often. Find a good Neph that will stay on top of his blood pressures and true dry weigh. I can tell you, that the longer he does dialysis, the less his kidneys will work. I know my hubands creatinine got down to 3.6 and they never told us, just kept sucking him dry. Low blood pressure is usually a sign of TOO dry. If you don't like the center he is going to now, FIND A DIFFERENT ONE, for his sake. Have they told you that his kidneys might recover? Lori, I can tell you that if I could do somethings over again in 2001 and early 2002, I would have. I just didn't have the information and nobody was really talking. I have learned allot from everyone here on IHD and all you have to do is ask a question and you'll get all the answers you could possibly want. Take care and keep us posted. :cuddle;
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Hi, Lori! Welcome to IHD! I, too, am a caregiver (to husband Marvin, 13 years on dialysis). Reading your post brought back a bunch of memories; Marvin had no warning that dialysis was coming for him -- four days after being diagnosed with ESRD, he started dialysis. At first, it was like a whirlwind for us -- all of this new stuff was coming at us from different directions and we were overwhelmed! Find out as much as you can about ESRD, dialysis, the meds, etc. Research. Read. Ask questions. Ask questions. Ask questions. Sluff is right -- Knowledge is POWER ! I agree that you need a good neph doctor and that you/your husband needs to insist that his clinic stay on top of his treatments and his BP. We were at a clinic for 12 1/2 years that we didn't think was giving Marvin as good a care as we thought he needed. Now, we are doing home hemo, and it is great!
I wish that IHD had been around 13 years ago. The people on this site have a world of knowledge and experience, and it would have really helped me if I could have had this place back then. I'm glad you found us, and you will find that the people here are willing to answer any questions you have, let you share (or vent or rant or cry or laugh), and truly care about you. Hang in there, Lori! Dialysis is never "easy," but it does get easier as you go along.
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:welcomesign;
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:welcomesign;
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Lori, :welcomesign;
I am a caregiver, too, to my husband who is pre-dialysis. This site is the BEST.
A word of caution regarding the whole family being on the renal diet: This is wrong.
The family needs potassium, phosphorus, etc., in order to maintain health.
Annabanana
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Welcome to our community, Three Times Lori! We are so glad that you joined us. Why are we glad? It is great for you to have a place like this where you can interact with others who understand EXACTLY what you are going through! Also, we have become a wonderful big international family, and we always have room for another family member! :grouphug; I am always particularly gratified when someone joins us because of their care for a loved one. As you would have already seen there are quite a few like that in our group. Feel free to vent whenever you need to. Read, read, read, and post, post, post! Looking forward to hearing more of you.
By the way, that was a great intro - just the kind that our founder Epoman liked to see.
Bajanne, Moderator
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Return the Hi from the streets of sunny Phoenix! Welcome to IHD. It is so nice to be able to talk to people who understand! Family and friends think they understand but unless they have lived it their is just no way the can really know! Hope to hear from you often.
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Hello from another person from the suburbs of Chicago
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Will we see you at the Chicago party this year? Welcome. Yes there will be a meet and greet outside of Chicago. All members are welcome to come. Have some fun reading the site. Welcome again!
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Hi Lori! I am in Chicago too, moving to San Diego though....
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:welcomesign;
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:welcomesign;