I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: paddbear0000 on February 04, 2009, 02:36:59 PM
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Well it's official. I start dialysis on Tuesday. I just got back from my neph appointment. My function dropped to 8%, down 1% in a week and a half! My creat is now 6 and my phosphorus level is now high. My potassium is still normal though. I'd rather have it the other way around though. I love cheese! I'm so sad. The doctor is the medical director of the local hospital's dialysis clinic, as well as his office's dialysis clinics, so I will be going to those. He got me in for the 11:30am time slot on Tuesday, Thursday and Saturdays for the first month at the hospital. There are only a few chairs there because it's really for hospital patients, so after I "get settled" into dialysis (about a month or so), he'll have me start going to one of the larger clinics.
My fistula surgery is the day after tomorrow, so the surgeon is going to place my catheter as well. In a way I'm kind of glad I'm starting because I'm tired of the roller coaster of feeling crappy or downright miserable.
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Good luck on Tuesday paddygurl, I will be thinking of you and I hope the experience goes smooth. Give yourself some time for adjusting to dialysis. We will be there in spirit. :grouphug;
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Well, it sucks to finally have to start - but as you said, it'll be good to get off the roller coaster of down, and miserable. Keep in mind though, it will take time before you get on an even keel. Even once on dialysis, they tend to challenge your dry weight, another set of the blues. Good luck with this new chapter of life, I hope it goes well :thumbup;
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Oh Padd, I'm both happy and sad for you at the same time. I hope that dialysis can make you feel a little better, but I'm so sad that you have to do this at all. You will definitely be in my thoughts on Tuesday. :cuddle;
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I'm Sorry, You have to start Dialysis. It is a whole New way of Life, but I know You will feel better. Surround Yourself, with Family, Friends and IHD.
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Thanks. I don't think he's having any fluid removed at this point.
Now I need suggestions of what to bring with me on my first day! I bought a nice, thick fleece white blanket that i can bleach if I get blood on it, as well as a bleachable, t-shirt jersey fabric pillow case cover for a pillow. I'm going to call them tomorrow to see if they have wi-fi. I sure hope so! I'll go nuts. My poor husband is going to bring me the first day and he's going to be so bored!
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Bring whatever you want to make you comfy!! Warm fuzzy socks might be good....and IPOD...a book. Oh and they better have wi-fi! Laptops are like American Express...don't leave home without them!
I hope the best for you, time to adjust and soon feel better (so you can cheat and eat something decadent and not feel ill)
God Bless.
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Lordy! Lord! What a week you will have! Here is my advice to a starting out dialysis patient:
Be aware of your weight on and off the machine. Dry weight is a fickle thing.
If you feel funny on the machine tell someone immediately.
Bring:
Must Haves
Warm fuzzy socks on your feet.
A warm blanket
a book
a magazine
a puzzle book
headphones for the TV
A head pillow for your neck
Hand warmers for keeping warm if you get cold easy. The local sports place will have these.
Could Have:
Radio or CD player with CDs
Portable DVD player and DVDS with battery pack
Fun stuff to do
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I hope it makes you feel better. Good luck :cuddle;
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Oh and a sense of the ridiculous and mundane in life when you are there.
And a sense of humor!
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Awww Padd, I hope it makes you feel better. Life inside a dialysis unit was a foreign and frightening experience for Jenna at first, I think, even though we had tried to prepare for when it happened, I don’t think we really knew what to expect. We were fortunate to live close to a well-regarded unit and she got good care. But we had to stay on top of what was going on, always reviewing her lab slips (we asked that they be faxed to us and we kept them in a notebook), constantly double checking her dry weight so they would not remove too much fluid (she was still urinating so they had to reset the machines default), asking questions and getting help from other patients (we didn't know about IHD when Jenna started, so you are way ahead of many patients who are just starting out!). I cannot recall, are you already on Medicare? If not, be sure to apply right away. Good luck! :grouphug; :grouphug; :grouphug;
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You have been preparing for a long time. You are going to be dealing with a lot of changes during the next week. We'll be here, supporting you with prayers and good thoughts. :grouphug;
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It's not good but at the same time it is good that you're going to start Paddbear. I hope that it will help you to begin feeling a bit better, not immediately like the first time or anything, but in due course. Sometimes you can feel awful at first because the body adapts to all the toxins running around and is unsettled as they get the boot. But for me it really made a huge difference to how I was feeling. Appetite will return, vomiting stop and so on. You know that you have us all going with you on Tuesday, I'll be sitting on your shoulder but not too heavily and I hope that you will remember that you're very far from alone there.
:grouphug; :cuddle; :grouphug;
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Paddbear,
we're here, we're here....your journey to dialysis is surely be not something to dream on. But one thing is sure, you can tackle and defeat all the obstacles. Food watch, exercise, and keen observations of your self, guarding your lab test, being on guard of nurses and doctors who imposes themselves, who thinks they feel what you feel are your best armors on this battle.
Prayers for you to go things smoothly.
love,
cris
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Thanks so much for the kind words and support. Yo have no idea how much it means to me! And thanks for all the ideas. At the beginning, my treatments are going to be in a hospital clinic which has only 5 chairs. I'm going to call and see how much space there is so I can bring all of my stuff. Usually the clinic is just for hospital patients. I'm hoping my husband will be allowed to stay.
I do have a question regarding the socks though. Everyone keeps mentioning warm socks. Do they not let you wear shoes??
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Oh PB, I guess we knew this day was coming, but then suddenly here it is. When my husband started dialysis we knew almost nothing. You have taken the time to learn and from my perspective, you seem about as well-prepared for this as anyone could be. I hope that you don't have too many ups and downs. We'll be staying posted and wishing you the best. :cuddle;
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Good luck. :cuddle; Like others have said it will probably take your body a while to get used to being cleaner and it will take a while to get your dry weight right. At hubby's unit I was allowed in as long as there wasn't anybody being put on the machine or being taken off the machine. in a little while you will feel a lot better. Take care. :grouphug; We knew nothing about dialysis when hubby first started so at least you have a lot head start on that!!!
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Wearing shoes in a recliner for four hours sucks. Dump the shoes and wear the socks.
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You definitely don't want to wear shoes.
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:grouphug; I hope all goes well for you.
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Thanks. I don't think he's having any fluid removed at this point.
Now I need suggestions of what to bring with me on my first day! I bought a nice, thick fleece white blanket that i can bleach if I get blood on it, as well as a bleachable, t-shirt jersey fabric pillow case cover for a pillow. I'm going to call them tomorrow to see if they have wi-fi. I sure hope so! I'll go nuts. My poor husband is going to bring me the first day and he's going to be so bored!
To get blood out use plain old Hydrogen Peroxide. Dump it on and scrub it and it bubbles it right out. Then throw it in the washer.
;)
I wore shoes for only 3 hours, but for 8 I kick them off. I weigh with the same shoes on everytime so that never affects the weight. I would NOT walk around the clinic with just socks on. ICKY!
Dirty Fish Bowl Syndrome: You will feel like a fish feels when he has been swimming around in dirty water and then thrown in clean water.... a little sick. But, it gets better when your body gets use to the cleaner blood.
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Good luck , you should be feeling lots better after a few sessions , :cuddle; i will be thinking of you
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:cuddle; I hope everything goes well for you! You'll see how much better you will feel after a while on dialysis. I didn't realize how "sick" I had been feeling until about 4 weeks of treatment.
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If you need a CD player, I have a couple of them that CellCept sent me.With dialysis starting, there maybe more oportunities for help in your area on top of your vision problems. As stated earlier, apply for Medicare and disability (have as much documentation as possible from all doctrs) before making the first visit with a case worker there. You may also get assistance from state Medicaid now too. Try to see if there is Ohio Department of Rehabilitation (mines called Illinois Department of Rehabilitation) and they can help you with vision/schooling, show your other areas of help, and then there might be a county service for disability and senior services which I am now forgeting what mine is called and I just went there today. The county can help you get into other programs for financial assistance even though husband works, you can get money because he is your caregiver. You may not feel like driving for a bit when you first start dialysis, but we are all different and some of these agencies may provide transportation service or taxi vouchers. Of course each state is different, but this is what is available in mine and might be in yours to some degree that may assist you in some manner.
As for your husband, he doesn't have to stay there, maybe he can waste some time at a mall, use the hospitals library, or something in the area.
Good Luck on your first day and your surgery. Hope all goes well.
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I hate you are going to have to start, but I do think you will feel better after a few weeks. I hope things will go smoothly for you. You will be in my prayers.
Love, Mimi
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:cuddle; :cuddle; Hugs Paddbear
I know you will be feeling better in no time. I will be thinking of you. xox
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:cheer: :cheer: :cheer: you can do it. We are all here for you.
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:clap; you can wear shoes but your feet still get cold :ROFL;
our unit is freezing for the patients b/c the techs get too hot when they have to wear the yellow jackets -- they sweat too much
so the trade - off is the patients get to freeze
twice, I almost asked off early - my teeth were chattering and that is not an exaggeration - and I am not a person who gets cold easily -
good luck to you -
I think you will have more energy -
glad to see your husband here
I do not want my husband here -- I tell too many of our secrets :waiting;
your dog avatar is so cute --- I always feel better after seeing him
while your fistual is healing enjoy being able to use both your arms during dialysis - how long do you run for treatment
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Hard to offer any advice as i am predialysis.
But i wish you the best in care and hopefully you will feel a BIG change after a few sessions.
I know you were preparing yourself for this day as i am. But it came kinda fast huh :-(
:cuddle; Hang tough and feel better soon.
P&K
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Dear P.Bear,
As many of our friends above have mentioned, you
are beginning this new path with a wealth of knowledge.
We knew nothing about Dialysis when my husband had to
start. It may take a while for your body to adjust, but plse
keep in mind that in the long run you will be feeling so much
better.
We will be with you thru this - sending a :cuddle;
Anne
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If you need a CD player, I have a couple of them that CellCept sent me.With dialysis starting, there maybe more oportunities for help in your area on top of your vision problems. As stated earlier, apply for Medicare and disability (have as much documentation as possible from all doctrs) before making the first visit with a case worker there. You may also get assistance from state Medicaid now too. Try to see if there is Ohio Department of Rehabilitation (mines called Illinois Department of Rehabilitation) and they can help you with vision/schooling, show your other areas of help, and then there might be a county service for disability and senior services which I am now forgeting what mine is called and I just went there today. The county can help you get into other programs for financial assistance even though husband works, you can get money because he is your caregiver. You may not feel like driving for a bit when you first start dialysis, but we are all different and some of these agencies may provide transportation service or taxi vouchers. Of course each state is different, but this is what is available in mine and might be in yours to some degree that may assist you in some manner.
As for your husband, he doesn't have to stay there, maybe he can waste some time at a mall, use the hospitals library, or something in the area.
Good Luck on your first day and your surgery. Hope all goes well.
Actually, my husband can just go home. The clinic I will be at the first month is literally right down the street from our house, about a mile. Driving shouldn't be a problem either since it's so close. If need be, I can hop on the bus. I will avoid that if at all possible because it's kind of nasty, but if I have no other option, it'll have to do.
As far as the Medicare goes, I'm not 100% sure I'm going to apply. We have excellent insurance coverage through my husband's work. It pays 100% of any transplant related expenses, and except for a $250 yearly deductible, it fully covers dialysis as well. Pretty much all we will have to pay are $20 copays for meds and doctor visits. And we have a $5 million lifetime maximum. The monthly premiums and 20% coinsurance payments of Medicare is actually going to cost a lot more money in the long run.
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Use all resources available to you. Apply for Medicare now anyway, unlock your benefits. Always be as prepared as possible with this economy and unemployment rate. 5 million is can go by quickly with dialysis and transplant combined (follow up care included) in some cases. From what I have read on the boards, people use both their primary insurance and Medicare to help pay for dialysis. If there are resources available, always use them.
I feel the same about the buses in Chicago too and do not use them, plus they don't get where you exactly need to goeither in a place you have no idea about. So I take the thrill ride a minute, a taxi. :rofl; ???
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Yeah, you have to consider that Medicare premium is $96 a month. You do have good insurance. If they ever change your benefits Medicare will be there.... (I HOPE)
:waving;
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Also when you apply for Medicare, start the process for disability, that will get rid of the $96 charg, well did for me.Your eyesight is almost as bad as mine, just not blind in one eye and that will help towards disability along with the neuropathy, gastroparesis, and other diabetic complications as long as the doctor states it. So all eye docs, GP, Neph, maybe Transplant team (kinda doubt them) can help aid in your approval. Bring a business card from each doctor with also to show Social Security you are prepared. You may need to fight, but sometimes you don't like myself.
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I will be praying for you :grouphug;
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paddbear --We are all with you in spirit. Good Luck to you. :grouphug;
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Good luck. You'll adjust just fine. It becomes such a routine. And don't be afraid to ask questions. I drive them crazy at my clinic. I can be a bit demanding. But hey we have a right to ask and receive. Never Weaken!!!!!
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hmm I wear shoes and it's not an issue. Others take theirs off (pewww! LOL) so I guess it's up to you. Since it's summer here a lot wear sandals and the like. Whatever is comfy I guess (imm I've not seen anyone wear ugg boots though :rofl;). The important things to take are absolutely a sense of humour (I'd have been gone ages ago if it wasn't for it) and to expect something you don't expect(even with the IHD primer).. and just try and take it all in as you can. There's a lot to get used to. The machine, the needles, the procedure etc. Hopefully you will be set up properly and not have any trauma first go and they will explain things to you.. if they don't *ASK* - an informed patient is a better one I feel. I know I would go nuts if I didn't have some understanding of what is going on.
Soon all the stuff we talk about like dry weight and UFR and all that stuff will become familiar to you (unfortunately) but use it to your advantage. Ask to have the machine set so you can read it and know what is going on).
Also as someone said up top - if you start to feel funny - even the slightest bit - TELL THEM! Until you become stable the settings, and other stuff will be a bit of a guess and they may do something that lowers your BP too much, or something else.
Also if you get cold and your blanket isn't enough ask for the machine temp to be put up by 0.5 degrees. It may hellp. A lot of people at our clinic run at 36C. I run at 35.5 because I get too hot at 36 (what can I say? I'm a hot guy).
Above all try not to panic or stress too much. You will have qualified people looking after you and that's the most important thing. We're all behind you.
Welcome to Dialysis! :grouphug;
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Padd (Janet... that's going to take some getting used to) just went into surgery about a half hour ago. This is fistula stage I and what they called a tunneled catheter. I think thats right.
Anyway, the doctor was late so surgery started about an hour late. Pretty cool that this hospital has wifi so I can log on while I'm here. Staff has been great so far. Wish her luck!
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Good luck and keep us posted...
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:grouphug; paddbear. We are thinking about you. Keep us posted paddshubby. :cuddle;
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The insertion of the tunnelled catheter is pretty quick, it's just recovery from anesthesia that takes time.
:grouphug;
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just checking in :cuddle;
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just talked with the doc. she's out of surgery and doing fine. should get to see her soon. thanks to everyone for your support!
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Give her our love. :grouphug;
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It has been given and readily accepted. She was thrilled when she woke up and I told her I was in touch with the IHD crowd.
Right now she's sleeping in recovery at the hospital thanks to the morphine and phenergrine. Once her nausea is under control and she can take pain meds by mouth, we'll be heading home.
Looks like thats happening now.
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Take good care of her :grouphug;
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Paddshubby, we really appreciate you keeping us updated. Give Paddbear my love and a big big hug. I look forward to her getting accustomed to dialysis and feeling much better.
We will be with you two all the way (can't get rid of us very easily!)!
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hmm I wear shoes and it's not an issue. Others take theirs off (pewww! LOL) so I guess it's up to you. Since it's summer here a lot wear sandals and the like. Whatever is comfy I guess (imm I've not seen anyone wear ugg boots though :rofl;). The important things to take are absolutely a sense of humour (I'd have been gone ages ago if it wasn't for it) and to expect something
We live in the top end of Australia. Temp range is 30-40 degrees celcius daily
My Dad wears ugg boots to dialysis
It's bloody freezing in the unit
Anyway
Lots of love and best wishes on this new path mate
IHD family has given you a wealth of knowledge and support
Take care dear mate
:flower; :flower; :flower;
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She might be even more sor when she is more out of it, but hopefully not. Hope it all went well and the doc didn't find the veins to bad when they went in and actually saw the veins. Now on to the real fun I guess on Tuesday. Tough call on which one is worse.