I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: kickingandscreaming on April 25, 2017, 06:52:30 AM
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Looks like I'm staring death in the eye. Just learned that my "clearance' came in at 1.3 with now no residual function. It means that I have only one chance to avert the need to switch to HD and that is by increasing my fill volume. AND increasing to 8 exchanges/day including 7 on the cycler. So effectively, my life will be taken over totally by D-- assuming even that this does the trick and raises my clearance. Enough.
I really, really don't want to spend the rest of my weary life on an HD machine with holes punctured into my arm,sitting in a chair. Already, even before this shift (if it works) my life feels taken over by PD. It's getting harder and harder to find justification for staying alive. I'm not productive anymore as it is. My dog is the only thing that keeps me going. And she's 15+. When she's gone, I can't imagine what would make my life feel meaningful. I will not take on another dog--even tho i feel as is I can't live without one in my life. I just don't have the energy to properly exercise a dog and I'm too old to make a long-term commitment to another animal. So this feels like the beginning of the end. :'(
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K&S, did you ever find out if you have congestive heart failure or not? I've gone back through your most recent posts, and I can't find anything. I know you were going to be tested; did you get any answers?
I'm asking because I wonder if HD via a catheter may work for you. Our member Kristina has one because she is an artist and a pianist and was concerned a fistula creation might affect the use of her hands. She has used it successfully for quite some time now, and she is doing well. It must be said, though, that she is absolutely meticulous in keeping that area clean. She understands the risks.
I know that here in the US, it's "Fistula First", but perhaps for you, a catheter may be a viable alternative?
:cuddle; I'm so sad to hear that you are feeling so hopeless. I can understand why you feel this way.
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Yes, if you are feeling you just cannot do needles start with a chest catheter. See how you feel and go from there. Nocturnal (8) hours 3 nights a week is good because at least you get your sleep and your days are free.
Maybe you can rescue an older dop later to help improve a furbaby life.
But... I do know how you feel.
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K&S, did you ever find out if you have congestive heart failure or not? I've gone back through your most recent posts, and I can't find anything. I know you were going to be tested; did you get any answers?
MM- I still don't know much. I saw a cardiologist who mostly pointed to A fib. I did an Echo yesterday and will hook up to a monitor next month. So the data is still coming in.
When I began D back in 2015, I started with a catheter. It was a PITA because it was very hard to bathe. I abasolutely can't imagine being punctured many times/week. it is just so barbaric.
My clinic doesn't offer nocturnal. So I'd have to change a lot of things to do that.
I don't think I have congestive heart failure. When I walk, my limititations aren't in my breathing, but in my very stiff hip joints that are just plan out of shape.
If I ever did adopt another dog it would be a senior. But I still can't guarantee a rescued dog a life of stability. And that's very important to me. I love dogs and would not want to contribute to their harm in any way.
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Sorry you are going thru so much right now, K&S. I maybe shouldn't say this because we have people on here doing home-hemo and I applaud them. As you know, my husband and I did that for 3 years until my Fibromyalgia got so bad I just couldn't do it anymore and he can't do it himself. So...back to doing in-center he went. But you know what? He's actually less stressed because it takes the stress off of me and we are both happy about having more time to do other things again. He goes 3 times a week in the early morning hours (6am-10am) and then works a full-time job. When we were doing home-hemo, it took up a lot of our time but we were grateful for the option, he felt good and his labs were great. But he eats right and stays active and his labs still are looking good but we have more time now. He says his time is priceless. Please think it over...
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@PrimeTimer thanks for your experience. I was thinking along the same lines and was wondering if @kickingandscreaming might actually find dialysis is less of a commitment and time drain going from 7 PD transfers per day to the 4-6 hours (including commute) every other day for in center.
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going from 7 PD transfers per day to the 4-6 hours (including commute) every other day for in center.
I would agree with you except that 6 of the exchanges take place while I'm asleep and the 7th is just before hooking up to the clycler for the remaining 6 exchanges. I'm not saying they don't eat into my consciousness. They do. But most are not competing with regular time and activities.
I just find the whole culture of the in-center hemo depressing and draining.
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Don't give the ship just yet.
Pd works by the DIFFERENCE in the sugar levels between your blood sugar and the dialysate sugar. SHORTENING the dwell time, INCREASING exchanges, using MORE or bigger bags to equal a total more volume.
This will work as you will be spending more time with a higher sugar level, pulling more fluid and toxins, increasing your ''adequacy'.
You need to have this talk with your Neph, then the Nurse can help you make the adjustment to the Cycler program.You do NOT need to change your fill volume.
This worked for me up until I got that infection and ended up losing my PD cath. Which as it turns out, isn't really a bad thing. With the Perma Cath and an early morning seat assignment I get up, get in, get done, and I''m FREE. NO CYCLER to tie me down every evening. I can stay outside unti long after dark again. Whoo Hoooo!
So really, it is all in how you look at it. If you are an 'Early Riser' like I am, Hemo can work well.
Granted, I do have that needle paranoia. But I'm thinking seriously about that. I can get a shot O.K. Even blood draws with those itty bitty butterfly needles are alright. My problem is getting an IV put in. My veins seem to sense that needle coming, shrink up and roll away. But an access, well developed, Big, and FAT................ This should make a whole lot of difference. I just need to have a little talk with the surgeon about whether he is planning on using MY vein, OR a synthetic HOSE. If MY vein will swell up nice and fat, then maybe that should be O.K. A synthetic hose shouldn't know any difference.
So looking at Hemo from a slightly different angle, MAYBE not necessarily a bad thing.
We never really know in advance what we are capable of doing. It is only when it happens, that we rise to the challenges that face it, and over come those obstacles. Looking back afterwards we can truthfully say, It wasn't near as bad as I thought it would be.
So I say again, Don't give up the ship just yet. Tomorrow WILL be a new day. Rise up, get out, and enjoy it!
Take Care,
Charlie B53
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Try to take one day at a time. Today's worries are enough, so thinking about in center hemo before finding out if you can get adequate clearance with PD is a huge burden. Just work on the adequacy for now. I am thinking of you and praying for you!! You got this!
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I do I center hemo commute, treatment, holding, all take about 6 hours. That's a total of 18 hours a week, that leaves 150 hours each week to have a life. I chose in center instead of pd because I have a house in the Adirondacks by a lake. Nice lake, one of the true joys in my life on a hot summer day is to jump in the lake to cool off. PD would mean no more lake. My method of dealing with in center is I generally stay up very late the night before and go to the first shift in center, generally. You get on and off at a regular time. If you are on an other shift your starting time depends on every one before you being on time. Now since I arrive tired after being put on the machine I put on my headset and turn on the music. I then go to sleep, usually I get between 2 to 4 hours sleep. So the experience seems to me to be about 1.5 to 2.5 hours long ( I have a 4.5 hour time on system). My advise if you have to go to hemo try it for 6 months before making any decision. Last October I had a major heart attack after angioplasty I could not walk the 8 feet from my bed to the toilet. This was very depressing. I did not think I could live that way, then it hit me if I stop dialysis I didn't have to live that way. Thinking about it in my bed I realized I could wait and see if it would get any better and if it didn't I could still pull the plug. It got better not perfect but better. I would say don't decide on ending treatment to avoid hemo until you try it. The choice between the various modalities is complex and everyone has a reason to think the modality they chose is the best. But don't stop until you find out for yourself what's involved. Good luck, I hope you find a way to stay on PD but if you can't I hope you try hemo for at least a few months to find out if it really is as bad as you think.
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I guess I didn't state clearly in my OP, but I HAVE tried in-center hemo. It was the first modality i did before being trained in PD. So I know what it's like. I did it for about 4 months and hated every minute of it. Being on my own with PD was a great relief --until it started not working well.
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I'm sorry to hear about this change for the worse, but agree with smartcookie, concentrate on the now. Thinking of you, and sending positivevibes
:cuddle;
Love and strength, Cas
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One other thing the quality of your experience at hemo depends greatly on the quality of the center you go to. If it's hemo don't quit see if anyone knows of a better center. Recently the center I go to closed down for 2 month for a rebuild. I was sent to a center owned by the same company 2 miles away. I was willing to put up with it for 2 months but the experience was not good. I am a 4.5 hour patient, they had me start at 7 pm then 3 hours later at 10 pm they began taking people off. It seems they had to turn off their water system to get it read for the next morning. They were so disorganized they didn't realize you can't put a 4.5 hour patient in a 3 hour slot. One of the people I go to dialysis with is a training nurse, she switched centers because she claims someone tried to kill her.
If you hate the center you go to look around there are diamonds out there.
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I don't hate the center. It's actually a good clinic from what I gather from others. The nurses and techs were mostly very nice and seemed competent.
What I hate is hemo. I hate the idea of needles. I hate sitting for hours on end in a an uncomfortable chair. I hate the noise of alarms going off constantly. I hate the bright glare of fluorescent lights. I hate the depressive vibe of patients all lined up in their chairs surrendering passively to the process. I found the whole experience to be demoralizing.
I like being independent. I like setting my own hours,. Being able to move around at will. None of those things are possible in in center hemo.. I know everyone's different and some people are better at accepting shi*tty situations better than I am.
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Buy a jell cushion, wear head phones and listen to music, ask to have the light over you turned off, find some thing to do, try first shift and nap for half of the session,. I spend my time on my iPad playing games reading or watching movies. No one likes to be stuck in the chair the secret is to find ways to make the time more palatable. Dead is forever, find a way to make your time productive or fun. It's your life and every dialysis patient has a choice so do you adapt or die. I wish you well and good luck.
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I often borrow words from songs, so, I wear my Sun Glasses at Night. Inside. They really help with the bright lights.
I've learned from the others here. I take a big plastic bag that has my pillow and a soft little blanky. The pillow goes at the small of my back as most chairs are not at all comfortable with my damaged back. The cozy blanky keeps my legs and lap nice and warm.
I've 'borrowed' a sort of carpet bag from my Wife, I load it with my padded lap board, laptop computer, remote mouse, headphones, reading glasses, insulated glass for ice, snacks, books. It ends up getting heavy. Before I sit in my chair I grab one of their pillows, put a cover on it, set my lapboard, computer and blankie on top, then start unloading all the rest of my qwap on to the side table. I get everything I need to keep me occupied for the whole session all at my fingertips.
One of the Techs tries to poke fun at me for 'moving in'. I just laugh.
As independent as you are I am surprised you haven't asked more questions about doing home Hemo. While I do have that terrible aversion to needles, I have the seed of an idea that once my coming access is adequately matured that it is sizeable enough to very easily 'needle', that I just might learn to do this, needle myself. If I can get to that point, then I very well may be able to do Home Hemo. The idea of shorter, daily sessions, and possibly reducing the fluid and food restrictions.................... WOW!! So I can't say that this ISN'T possible. I will simply have to wait and see.
So you have done in-clinic using a perma cath. Can you find anything that was GOOD about it?
Can we talk more about what you didn't like? Can you think of any way to change some things so to make it any less unbearable?
Sometimes when we look behind things and figure out what can be changed, we can totally change our perception if the event. For a 'Do or Die' procedure that can make a HUGE difference.
We are still a long long way away from Hemo yet. Your Cycle program can be seriously tweeked yet. Let's not jump too far ahead just as yet. Have you made an appt to talk with your Nep and Nurse about increasing volume and exchanges by reducing dwell time?
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I understand Thelma .... drive up here and get me.
Louise :thumbup;
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I am not eligible for home hemo as I live alone and have no care partner. I also seriously doubt that I could self-canulate. But that's neither here nor there as I'm not eligible. If PD fails, I have 2 choices: in-center hemo or hospice. Strongly doubt I'd be eligiible for TX so not even listed. Too many co-morbidities and too old.
Louise- I'm coming.
Thelma
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I like being independent. I like setting my own hours,. Being able to move around at will. None of those things are possible in in center hemo.. I know everyone's different and some people are better at accepting shi*tty situations better than I am.
You have done an excellent job of explaining why my first words to my current neph (who I was seeing pre-D) were "I need to know if you will get me home treatment, because if the answer is no we will be wasting your time and mine".
I am not eligible for home hemo as I live alone and have no care partner.
The Fresenius people should read a few papers on "the dignity of risk" - a well discussed topic in the medical world.
I am certain that I could do it alone because I do. My wife is in the house, but it's all me start to finish, with no help involved. I believe the Northwest Kidney Center (Seattle area) allows solo home hemo, as do some NY clinics (since state law requires remote monitoring for home hemo patients).
If anything happens to my wife, I'd probably list my dog as my care partner :bandance;
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One of the Head Nurses at my clinic and I had this very talk yesterday, about doing Home Hemo. When I told her how my Wife only went to PD Training as a formality for me to get started, that I know my Wife would never be able to assist me in doing Home Hemo, Nurse told me how with many patients the requirement of having a Care Partner is merely a formality, that after training once at home it is very often only the Patient actually doing the Dialysis as the other person is merely an observer doing nothing.
She went on to explain the requirement is there to prevent the patient from bleeding out from a leak of they fall asleep, leak, and fail to wake up. She tells me there is a 'pad' somewhat like the pad they use to prevent any spillsl making a mess during connections, sticks, etc., that this 'smart pad' has a sensor that tells the machine if/when it gets any liquid on it wetting the pad, setting off a very loud alarm which would waken any sleeping patient.
With these 'smart pads' they may soon be able to do away with the 'Care Partner' requirement and more patients may be able to do Home Hemo alone.
It disturbs me to see anyone just give up. There must be a way for the determined to succeed. We only have to look much deeper and figure out how that can be done.
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The product commonly used for detection of blood leaks is the "redsense" (www.redsensemedical.com) blood leak detector. When I tried nocturnal (failed due to dialysis induced insomnia) I had some problems with false alarms. The president of the company is a very nice guy (I've had numerous conversations with him and have a NDA with Redsense which allowed him to speak freely). Fresenius is issuing these for nocturnal patients.
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Hey K&S, just wanted to send some love and support. I always enjoy reading your contributions here and I love your perspective, humor, devotion to your dog (like me!), and intelligence.
When I was diagnosed, I decided not to do HD for the very reasons you said. I'd watched my dad go through it, and while he faced it with a lot of good humor and patience, I never thought I could do it the same way. I didn't want them to cut my arm to make a fistula. I didn't want to sit for hours with needles. I didn't want any of it. (And with PKD, PD wasn't really an option. Also I love baths. :) )
But then I got really sick (this was me at age 40 and I could barely think or walk!), and I opted to stick around and try HD. I live alone and I have a little dog who loves me and needs me, and I'd made a commitment to taking care of her. And HD is... well, it's OK. I felt so much better than I had before that it changed everything for me and changed my outlook. It's been almost a year now.
Some things that help me the most:
- I asked for the shift that has mostly patients who are still working, which is third shift at my center. These patients are more active/stable and have the energy to be more friendly, and so they may have more in common with you, because you sound like a bit of a firecracker. :)
- I bring an almost hilariously enormous bag of pillows and blankets and build a nest in my dialysis chair, which makes it super comfortable. Seriously, it's a pillow to sit on, a pillow for my back, a small pillow to rest my hand on, a small folded blanket to rest my arm on, and a blanket to cover me! Other patients have said they look at me with envy. It's a bit much, but it makes the chair bearable and almost nice!
- I enter through the side door, which lets me avoid the clog of medical transports at the main entrance, and it feels more like a regular doctor's appointment.
- I bring snacks and a small drink from home. Snacking helps bide the time. I also keep a small bag with lip balm, moisturizer, hard candy. Like what you'd bring on a long car trip.
- I also bring my own entertainment (iPad) and connect to their wifi. No one else seems to do this but it's ideal. They have TVs there, but I felt like a zombie just sitting and watching TV, so bringing my own feels more like sitting on an airplane or being at home than being plugged in getting treatment.
- The needles are OK. They don't hurt, and I just look away when they are going in or out. When it's all taped up, I just depend on a well-honed cognitive dissonance.
Above all, the thing I like most about HD is that it lets me partition my illness. When I am at the clinic, I am sick. When I am home, I am healthy. So it makes me feel like I'm almost normal when I'm at home. And that's really valuable to me dealing with a long-term illness.
Anyway, I hope you try it again and have better luck. Taking a shift with more active people did wonders for my morale and made it a lot less scary.
Sending you hugs and hope.
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Thank you, LorinnPKD.
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Come on! Who would I fight with on the Political Section!
http://ihatedialysis.com/forum/index.php?topic=33894.0
:shy;
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Above all, the thing I like most about HD is that it lets me partition my illness. When I am at the clinic, I am sick. When I am home, I am healthy. So it makes me feel like I'm almost normal when I'm at home. And that's really valuable to me dealing with a long-term illness.
That's a good description/way of thinking. I think you are spot on with the rest of your comments.
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LorinnPKD: thank you for the wonderful ideas and attitude.
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LorinnPKD, yours is probably one of the most helpful posts I've read in a long time! Thank you for taking the time to post.
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"cognitive dissonance" -wow ! and" dignity of risk" --- Thanks for the post , dynamic. Thank you
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Very well said LorinnPKD.
Much what I have been trying to explain. It is what we make of it. As long as our dry weight is not set so low as to cause symptoms, we can feel fine, and continue on with our lives quite well.
Your first few months can be a bitch, getting your dry weight where it needs to be to feel good. Learning what creature comforts help your pass the treatment time. This makes a HUGE difference.
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LorinnPKD your post summed up my dialysis experience far better than I have ever been able to. Most of what you bring so do I the only thing I bring is a thinkgeek.com iPad holder that holds the iPad so I can work with only one arm. Thanks for the post it really hit the point dead on.
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Aw, thanks everyone.
Sounds like we're all sending lots of love to K&S as she seeks out a path... She's a good egg.
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Exactly. What I fear is K&S does not yet recognize the possible depression striking once again upon learning of her treatment inadequacy.
even slight depression can often blind us to the possibilities that yet exist, until these are pointed out and well explained.
I Pray K&S stay with us a long time yet. She has so much insight to contribute to so many people yet.
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I see this in my Wife. Her diabetic vision problems create depression that she fails to admit to. I have managed to convince her to take her Prosac and Xanex, but she still won't take them as often as they are prescribed. Claiming she doesn't need them. Yea, Right. I know better. Sleeping in daily, won't get up and around, won't go outside even on nicer days. Lack of interest. She was NOT like this before. I can see it so clearly but she cannot.
It's difficult when a Patient cannot see their problem so clearly. Very hard to explain in terms they will understand.
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We love you, kickingandscreaming.
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Looks like I'm staring death in the eye. Just learned that my "clearance' came in at 1.3 with now no residual function. It means that I have only one chance to avert the need to switch to HD and that is by increasing my fill volume. AND increasing to 8 exchanges/day including 7 on the cycler. So effectively, my life will be taken over totally by D-- assuming even that this does the trick and raises my clearance. Enough.
I really, really don't want to spend the rest of my weary life on an HD machine with holes punctured into my arm,sitting in a chair. Already, even before this shift (if it works) my life feels taken over by PD. It's getting harder and harder to find justification for staying alive. I'm not productive anymore as it is. My dog is the only thing that keeps me going. And she's 15+. When she's gone, I can't imagine what would make my life feel meaningful. I will not take on another dog--even tho i feel as is I can't live without one in my life. I just don't have the energy to properly exercise a dog and I'm too old to make a long-term commitment to another animal. So this feels like the beginning of the end. :'(
Are you referring to your adequacy (Kt/V) when you say "clearance"? If so, are you positive it is necessary to switch from PD to HD. Last December, my nephrologist was concerned about my adequacy. I wasn't meeting "the standard (1.7+)". He feared that my peritoneum was failing. I pointed out that the value of Kt/V is questioned in the medical literature. Also, despite the readings, I was feeling just fine--the standard used in other countries.
We went back-and-forth playing with my prescription and how my adequacy was done. Throughout it all, I was feeling the same as always and still being active around the house and community. After 4 months, we settled on my original prescription. We tried a variation of the adequacy test and lo and behold, I met the standard (1.7).
I obviously can't declare your situation to be the same, but don't give up without a fight. The chest catheter is a good idea too. My father has used one for the last 6 years because he refuses to get a fistula. Listen to your fellow members and do your best to work this out. Don't choose death just yet. I think you can overcome this issue.
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Tio-
One of the problems is that I am no longer peeing very much. Since my recent hospitatlization for flu/asthma, etc. the shock of it essentially dried me up. So now I don't have that to help with clearance. My first adequacy test (over a year ago) was 2.7 and now it's only 1.3. My blood work is OK, but not my clearance. I will do another test this week just to make sure. I currently do one manual exchange a day and 6 cycler exchanges nightly. I'm a high average transporter so I can't do long dwells (over 1 3/4 hours) or I start taking on fluid.
I also shared the information about the questions about KT/V in relation to PD. It went nowhere.
MooseMom- thank you!
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I think MM is asking 'How do you FEEL?'
Kidneys are susceptible to shock and can lose function. Whether that loss is permanent or not is questionable. When I started Hemo in Dec the clinic had my dry weight way too low. I hardly P'd at all. I was afraid the continued shock of drying out so much at every treatment would totally end what little residual function I had left. It took a couple of months arguing, but they finally gave in and we have substantially raised my dry weight. I am P'ing same as I was on PD again. I think this really helps my labs stay so well mid-range.
How is your weight now as compared to before this last round of problems?
I found I stay hydrated well enough that I have very minor swelling of the ankles by the end of the day. This seems just right, for me.
As long as your lungs stay clear, you may have room for another pound, or two. Your kidneys may be more comfortable.
The better judge of your condition is if you Feel well enough to continue your normal activities.
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Hey K&S, just wanted to send some love and support. I always enjoy reading your contributions here and I love your perspective, humor, devotion to your dog (like me!), and intelligence.
When I was diagnosed, I decided not to do HD for the very reasons you said. I'd watched my dad go through it, and while he faced it with a lot of good humor and patience, I never thought I could do it the same way. I didn't want them to cut my arm to make a fistula. I didn't want to sit for hours with needles. I didn't want any of it. (And with PKD, PD wasn't really an option. Also I love baths. :) )
But then I got really sick (this was me at age 40 and I could barely think or walk!), and I opted to stick around and try HD. I live alone and I have a little dog who loves me and needs me, and I'd made a commitment to taking care of her. And HD is... well, it's OK. I felt so much better than I had before that it changed everything for me and changed my outlook. It's been almost a year now.
Some things that help me the most:
- I asked for the shift that has mostly patients who are still working, which is third shift at my center. These patients are more active/stable and have the energy to be more friendly, and so they may have more in common with you, because you sound like a bit of a firecracker. :)
- I bring an almost hilariously enormous bag of pillows and blankets and build a nest in my dialysis chair, which makes it super comfortable. Seriously, it's a pillow to sit on, a pillow for my back, a small pillow to rest my hand on, a small folded blanket to rest my arm on, and a blanket to cover me! Other patients have said they look at me with envy. It's a bit much, but it makes the chair bearable and almost nice!
- I enter through the side door, which lets me avoid the clog of medical transports at the main entrance, and it feels more like a regular doctor's appointment.
- I bring snacks and a small drink from home. Snacking helps bide the time. I also keep a small bag with lip balm, moisturizer, hard candy. Like what you'd bring on a long car trip.
- I also bring my own entertainment (iPad) and connect to their wifi. No one else seems to do this but it's ideal. They have TVs there, but I felt like a zombie just sitting and watching TV, so bringing my own feels more like sitting on an airplane or being at home than being plugged in getting treatment.
- The needles are OK. They don't hurt, and I just look away when they are going in or out. When it's all taped up, I just depend on a well-honed cognitive dissonance.
Above all, the thing I like most about HD is that it lets me partition my illness. When I am at the clinic, I am sick. When I am home, I am healthy. So it makes me feel like I'm almost normal when I'm at home. And that's really valuable to me dealing with a long-term illness.
Anyway, I hope you try it again and have better luck. Taking a shift with more active people did wonders for my morale and made it a lot less scary.
Sending you hugs and hope.
Wonderful thoughts by LorinnPKD already !
There are only a few points I would like to add. For example, I bring a portion of my favourite potato salad, which is my evening snack during each D-treatment and I only enjoy this salad during treatments, so, psychologically speaking, I almost look forward to my treatments because of this delicious salad which I enjoy on D-days only. Another point is that I usually read and/or think about some interesting Continental weekly magazines with interesting crossword-puzzles during the first two hours (first crossword- price every week is 500 Euros, meaning that I am still trying hard and hoping :), or I read an interesting "gripping" story and I only do my crosswords and/or read this book on D-days during my treatments, so I often look forward to continue reading the story...
... And then, for the last two hours I sometimes watch an interesting film (courtesy of youtube) and listen to it via head-phones and/or I listen to my favourite music, courtesy again of youtube...
... Since I have started with D-treatments, I have had a chest-access catheter, which gives no pain and it has given me no problems so far (touch wood it continues like that, please ... and I feel lucky to be given the chance to survive in this fashion.
Best wishes from Kristina. :grouphug;
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Charlie I feel sorry for your wife since she must feel like he world is closing in on her. My advise is two fold, take her to concerts or events aimed at hearing more then seeing. Show her the non visual beauty in the world. Second have her make up wa list of things to see wile her vision is still good enough. Finally if you got Grand kids whenever she is really under a dark cloud bring em over it's tough to be depressed with kids around.
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I see this in my Wife. Her diabetic vision problems create depression that she fails to admit to. I have managed to convince her to take her Prosac and Xanex, but she still won't take them as often as they are prescribed. Claiming she doesn't need them. Yea, Right. I know better. Sleeping in daily, won't get up and around, won't go outside even on nicer days. Lack of interest. She was NOT like this before. I can see it so clearly but she cannot.
It's difficult when a Patient cannot see their problem so clearly. Very hard to explain in terms they will understand.
I am very sorry Charlie and I wish I could give you some helpful answers!
All I can do is to send you and your wife my kindest thoughts and best wishes from Kristina. :grouphug;
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this is an awesome post. I am not yet on dialysis and still have not made up my mind what kind to do. K&S you are so blessed to have so many people advising you. I guess that is what IHD is all about. At any rate, good luck , I know you will make the right choice for your future.
Luck & Love
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Tio-
One of the problems is that I am no longer peeing very much. Since my recent hospitatlization for flu/asthma, etc. the shock of it essentially dried me up. So now I don't have that to help with clearance. My first adequacy test (over a year ago) was 2.7 and now it's only 1.3. My blood work is OK, but not my clearance. I will do another test this week just to make sure. I currently do one manual exchange a day and 6 cycler exchanges nightly. I'm a high average transporter so I can't do long dwells (over 1 3/4 hours) or I start taking on fluid.
I also shared the information about the questions about KT/V in relation to PD. It went nowhere.
I guess I'm not sure what your peeing has to do with this situation. I haven't produced urine for 3-4 years. Nevertheless, I'm still on PD and achieving adequacy. Producing urine is a benefit, but not necessary. As for your cycler schedule, that can be adjusted. It can be programmed to do shorter dwells with more exchanges.
I'm not surprised about your being stonewalled about the Kt/V. Nephrologists have been told how patients are to be monitored and treated. Most have never experienced dialysis. Hence, they disregard what we have to say most time. Yet, it is not a one-size fits all situation.
Normally when I question a physician's judgement on a health matter, I get a second opinion. It is your right to do so. Have you tried discussing this with another nephrologist at another clinic? Don't give up hope yet!
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Tio-
I actually sent my nephro an article about KT/V. (https://www.ncbi.nlm.nih.gov/pubmed/27081745). Nothing changed.
I've always assumed that more peeing was a survival factor--one that I no longer have. I'm already doing a large number (7) of short exchanges-- one is manual and rest are on the cycler. Average duration is 1:36 or 1:45. Fill volume now is 2000/exchange. It used to be only 1800 becuase I was having breathing issues with so much filling. Using a nebulizer for my lungs has permitted me to go up to 2000ml/fill.
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I haven't produced urine for 10 years. It is a loss. Weird, and that is when you realize dialysis is really keeping you alive.
Hang in.
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While on PD with 2000 fills I did 6 exchanges of about 1 hr plus a last fill of Ico for the 7th that I carried all day.
I don't understand why they insist on keeping your dwells so long. Shorter dwells then refilling with fresh solution should draw more.
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From whatI understand really short dwells do not remove the mid-size solutes (e.g. phosph). I also don't carry fluid the rest of the day. Unlike you.
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I had NO food restrictions while on PD. I only took binders if I ate a big bowl of chili with beans. My Phos stayed at 3.5
I don't agree with that long swell theory. I believe it is the total time for dialysis. It is the greater difference in the sugars that drive the fluid and molecules movement. Shorter dwells keep that difference at a higher level.
If solution wasn't so expensive the Dr's would learn that twice as many exchanges of 30 minutes would remove far far more than half the exchanges at one hour. Same total time but far greater 'average' sugar concentration.
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K&S, I'm so sorry if I'm being daft here, but are you on a phosphorus binder?
My phosphorus was at a 9 or so until I started the binders (and before I started dialysis). HD also removes a varying amount of phosphorus. On HD and taking Renvela at mealtime, my phosphorus is usually somewhere between 4 and 5.
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K&S, I'm so sorry if I'm being daft here, but are you on a phosphorus binder?
I'm on 2 phosphorus binders (Renvela and Velphoro). My phosph is fine at the moment (4.5). It's my uric acid that is high and one of the reasons they are saying I'm underdialyzed.
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Are you on Allopurinol or Uloric for the uric acid?
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No. My uric acid has always run high and I have no signs at all of gout. I just run a higher baseline.
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No. My uric acid has always run high and I have no signs at all of gout. I just run a higher baseline.
I have no signs of Gout (got it once 25 years ago), but my MD keeps me on Allopurinol to keep uric acid in a normal range.
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Dr told me, AND I loooked it up. I thought Allopurinol was CONTRA-indicated for Renal patients? Which is the reason they called and told me NOT to takke it. It was already sent out in the mail. They immediately also sent me Febexo........ I forgot the name. I'd have to go get my bag of pills and look.
Whatever, the Fex one has reduced my uric acid measurably. I don't know it it made any difference in my calcium as Dr also increased my Sensipar at that time.
We're talking two different Dr's. The Renal Neph and the other guy. Qwap, I hate it when I forget words. Not Endo. I'm stuck. I'll remember later when thinking of something totally different. It will just pop into my head.
Rheumatologist!
Told ya I'd remember! LOL
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My doc tells me Allopurinol clears more slowly in renal patients, and has me on a low dose. My previous neph did as well. Febuxostat is Uloric. There was a big marketing push for this a few years ago since it is a new drug and far more profitable for the pharma industry than Allopurinol that is an old cheapie.
A big side effect of Allopurinol is Stevens-Johnson syndrome but, fortunately, it is relatively rare.
I always drop my neph an email whenever any other MD gives me an Rx just to make sure it is OK from a renal perspective.
sp mod Cas
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I belong to a large practice hundreds of doctors, they keep a single computer based record for me, any medication entered by any of the 6 or more doctors I see is flagged for my nephrologist to review, in the last 6 years he has modified a couple of my prescriptions from other doctors. The cool thing is how coordinated my care is.
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Don't give the ship just yet.
Pd works by the DIFFERENCE in the sugar levels between your blood sugar and the dialysate sugar. SHORTENING the dwell time, INCREASING exchanges, using MORE or bigger bags to equal a total more volume.
This will work as you will be spending more time with a higher sugar level, pulling more fluid and toxins, increasing your ''adequacy'.
You need to have this talk with your Neph, then the Nurse can help you make the adjustment to the Cycler program.You do NOT need to change your fill volume.
Charlie B53
Yep there are still options. My wife is on short dwell times, 20-24 minutes, 10 hour treatment with 3, 6 liter bags & extraneal on 50% tidal therapy. Her adequacy numbers are good. They changed to this when she developed calciflaxis back in 2015. With this and 6 months of sodium thiosulphate infusions three times a week, she turned the calciflaxis around. While the sodium thiosulphate treatments ended, they kept her cycler treatment the same.
Jack
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I am very glad to hear how well the short dwells worked.
Don't ask me HOW I knew it would work. It's one of those things I just KNOW. I can't explain it.
I must be Blessed as there are a number of times, things I've known that were later proven to be true.
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How are you doing now, K&S? You mentioned another visit to the hospital over on one of Cassandra's threads so thought I'd ask. I hate hospitals. Especially if it requires any sort of stay. Be well, take care. Hope you are home resting with your furbaby.
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How are you doing now, K&S? You mentioned another visit to the hospital over on one of Cassandra's threads so thought I'd ask. I hate hospitals. Especially if it requires any sort of stay. Be well, take care. Hope you are home resting with your furbaby.
I second that emotion!
I didn't realize you were in the hospital! Are you OK? Well, obviously not 100% OK, but, well, you know what I mean. Are you doing better?
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KaS? We're thinking of you. How are you?
Love, luck and strength, Cas
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thank you all for caring. I've had quite a week. I'm still in the hospital-- or in the hospital again. This is my second admission this week. Over the last week, I have fainted 7 times, lost consciousness and found myself crumpled to the floor. It got so that I couldn't trust my body not to faint. I think part of was that on my February hospitalization for flu/asthma/A fib, I was prescribed a new drug with caused my BP to plummet. That was part of it.
I went to the ER and was admitted for observation. In the ER parking lot I fainted for the 7th time before admission. I was put through all kinds of tests including an overnight heart monitor, but nothing irregular showed up except the low BP. So the dosage was lowered and I was sent home, full of fear that I couldn't walk, drive or function. Also, from all the falls, I really whacked out my lower back which hurt excruciatingly.
Yesterday, I went to my chiropractor for an adjustment and I screamed in pain just moving around in any direction. She sent me off to get my back Xrayed. So I went to urgent care for an xray and they took my vitals and found that my heart beat was only 40 beats/minute. SO I was dropping every couple beats (a potential lethal situation) and it was during these "no beat" voids that I was fainting. So that was their answer. I need a pacemaker.
I was ambulanced over to a different hosp. (where I am now) for surgery. Unfortunately, there was an emergency, and they couldn't take me until Monday. So to keep me alive they installed a wire in my neck/heart to stimulate my heart to beat when it wouldn't on its own. With this wire, I'm totally bedridden and can get out of bed at all in fear of jostling the wire loose. So I on a bedpan and all kinds of wonderful hospital experiences. But the good news is that they are clean that this is the problem and solution. Here's hoping.
A friend just brought me my laptop so this is the first time I can visit the forum.
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Whaaaaaaaaaaaaaaaaaaaaaat??????????????
I'm both shocked that this is happening, but at the same time I'm relieved that you are safe and that they have identified the problem and have a plan. I'm sorry you are lingering in the hospital until Monday.
Goodness, this is just really shocking.
You make them take good care of you, ok? Otherwise they are going to have to deal with your mates here at IHD.
Keep us updated now that you have your laptop. We are all wishing you well! You be careful with that wire, OK?
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Sorry to hear this, K&S. Will it be the kind of pacemaker they put in just under the skin near the collar bone? If so, I personally knew someone who had that and it worked like a charm for them. They were able to return to the business of living life shortly after insertion. Please take care and get well soon! And if it makes you feel any better, MooseMom called Paul Ryan a "ferret face" yesterday and I must say, I agree with her on that!
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And if it makes you feel any better, MooseMom called Paul Ryan a "ferret face" yesterday and I must say, I agree with her on that!
Now ya see? Miracles do happen!
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What is this 'new med' that has brought on all these terrible reactions?
I hope the Dr has cut that med in half at least.
I skip beats if I have too much caffiene. I allow myself only the ONE large mug every morning and NO more. Not even tea.
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Hi KaS so glad to hear from you. Must have been such a frightening week. Are you managing PP alright? I hope Monday will be soon so you get out of that bed and be 'better' again girl.
Wishing you all the best, and the always love, luck and strength, Cas
:flower;
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thank you all for caring. I've had quite a week. I'm still in the hospital-- or in the hospital again. This is my second admission this week. Over the last week, I have fainted 7 times, lost consciousness and found myself crumpled to the floor. It got so that I couldn't trust my body not to faint. I think part of was that on my February hospitalization for flu/asthma/A fib, I was prescribed a new drug with caused my BP to plummet. That was part of it.
I went to the ER and was admitted for observation. In the ER parking lot I fainted for the 7th time before admission. I was put through all kinds of tests including an overnight heart monitor, but nothing irregular showed up except the low BP. So the dosage was lowered and I was sent home, full of fear that I couldn't walk, drive or function. Also, from all the falls, I really whacked out my lower back which hurt excruciatingly.
Yesterday, I went to my chiropractor for an adjustment and I screamed in pain just moving around in any direction. She sent me off to get my back Xrayed. So I went to urgent care for an xray and they took my vitals and found that my heart beat was only 40 beats/minute. SO I was dropping every couple beats (a potential lethal situation) and it was during these "no beat" voids that I was fainting. So that was their answer. I need a pacemaker.
I was ambulanced over to a different hosp. (where I am now) for surgery. Unfortunately, there was an emergency, and they couldn't take me until Monday. So to keep me alive they installed a wire in my neck/heart to stimulate my heart to beat when it wouldn't on its own. With this wire, I'm totally bedridden and can get out of bed at all in fear of jostling the wire loose. So I on a bedpan and all kinds of wonderful hospital experiences. But the good news is that they are clean that this is the problem and solution. Here's hoping.
A friend just brought me my laptop so this is the first time I can visit the forum.
Dear K&S,
I am so sorry and really feel for you and shall continue to keep my fingers crossed for you !
It is amazing how calm and collected you sound and I am very glad about it,
because that seems to be only way to survive it all.
I think of you and send you lots of cyber-hugs and best wishes from Kristina. :grouphug;
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sorry to hear of your issues. I wish you the best and a speedy recovery
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K&S. I had a similar problem in Oct-Nov. I was going into V-tach and underwent a 7.5 hour operation to resolve the issue. It's amazing what they can do these days. They even have a ICD designed for dialysis patients. Good Luck the whole thing sucks rocks. But you will be surprised how fast things will get better. While you are the hospital check out and see if they have no salt chicken soup the hospitals I was in did and for the first time in 4 years I had chicken soup I didn't realize how much I missed the soup.
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Thank you all for your well wishes. At this moment, I'm scheduled for surgery tomorrow at noon. Hopefully, I won''t be bumped by an emergency. I'm concerned that I might have to spend time afterwards in rehab and leave my dog again. She doesn't have a long life ahead of her at 15+ and I can't bear to have to abandon her again; I just hope that some services can be cobbled together so i can manage PD and life skills with one arm in a sling.
the drug is metoprolal and it's intended to slow down a speeding heart in A fib and it lowers BP. At the moment, I'm no longer taking it.
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Sending you hugs and good wishes, K&S.
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Dear K&S, I can only imagine how frightening the fainting must have been for you. It scared me when I read it. It also scared me when I read about the metropelol, since I had been on it too at one time. I dont know if you are a "religious" person, but I am and I will pray for you. It doesnt hurt and I wish you a perfectly successful surgery.
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Good luck tomorrow KaS. I'm sure you'll be fine tough lady. My dad had one placed and lived an awful long time with it :angel;
Don't waste energy on worrying about your dog, you need energy for yourself now, and she/he will be fine too.
Just in case I'm sending loads and lots of positive and healing vibes your way.
Love, luck and strength, Cas
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Do you ever roll your eyes when, after you've described some medical condition you have, people regale you with stories that begin with, "Oh, my -------- had that, and (this and that and that again) happened!" ::)
Well, :P, my mother needed a pacemaker, and not only did it save her life, but it also made her pretty much as good as new (apart from her still needing dialysis). So, I am hoping you will reap the same benefit.
Good luck tomorrow. We will all be thinking of you. We need you to be fit for when the Senate starts looking at that dreadful House health bill. :rofl;
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Don't waste energy on worrying about your dog, you need energy for yourself now, and she/he will be fine too.
Do not underestimate the importance of a good dog in one's life.
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Wife and I have both been taking Metoprol for years. She is one a day, small size, while I am twice a day BIG ones. I used to take almost three times as much as I am now but as I lost all that 100 pounds the Dr had to keep reducing my BP Meds.
Granted, though we are all quite similar many respond quite differently to the same med. Be careful. Any med that is new to you needs to be taken with large amounts of caution.
I don't think we've ever talked about who is caring for your Fur Baby while you are in the hospital.
Is there someone nearby that helps? Are you anywhere near another member? Maybe we should all think about listing zip codes or something, as this could be a problem that needs attention sometimes.
I Pray your procedure goes flawlessly and you may be home by this time Monday.
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Thank you. A neighbor/acquaintance is taking care of my girl. She does dog boarding.Probably, by now, my dog has given up on ever seeing me again. Then she will give me the cold shoulder for a bit to punish me for leaving her. Then she'll forgive me.
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Then she'll forgive me.
Dogs are good at that.
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My husband is on that med too, it seems to work well for him. His heart rate is normal where as before the resting rate was 115. Those faints so just awful I'm glad you didn't injury yourself more seriously. Take care
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I've had only a few 'faints'. As I was losing so much fat weight my BP meds were working over-time. When I bent over to pick up something I dropped, I would get giddy, light-headed. I'd laugh it off, but there were three times I must have paused bent a couple of seconds too long. I remember getting light-headed, then I was on the ground. I don't think I was ever 'out' more than the half-second it took to fall.
It is a surprise. Fortunately I never hurt myself. I don't count my Pride. Broke that a long time ago.
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I'm back from surgery. Everything went well. Can't write much.
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Very glad to hear it.
I wasn't really holding my breath, but I was breathing very slowly.
Hopefully soon you will be back to speed, maybe with a governor to keep you from going too fast.
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Glad you're back! Hoping everything's going OK!
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Glad you are done with that!!! On to feeling tons better!!
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:flower;
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Well done girl!! Feel better soon.
:flower;
Love, luck and strength, Cas
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Ahhhhhhhhhhhhhhhh....what a relief! :2thumbsup;
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Happy you are back, hope your recovery is swift
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How are ya today? :waving;
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:banghead; I've been feeling great this year, but bumps in the road are starting to deflate my spirit. This month I had three surgeries: skin cancer (barnacles on my lower leg, plastic surgery (lasttic skin on my wound), and a skin graft (so I'd heal in weeks instead of months). I'm finally off the opiates for the pain and and can walk around without my thigh pulsing in pain. But my neprho nurse wants me to take another urine bottle test because my clearance numbers are low. I feel fine, so I think it's the test. The doctor has said he might increase my fill volume and/or time. Or I'd go back to he Moe. I've gotten used to PD after six years. I'm on/off the transplant list and it appears the artificial kidney won't happen for years due to development setbacks from blood clotting. I'd try home he Moe but I hate needles and my wife is too busy as a nurse manager to spend time with me for it What do other people do in this position? What should I know to make a good decision? Has anyone else ever gone through this?
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With me it was: getting really depressed after 5 years 'happy' PD, and 10 years in-centre hemo
Going mental of the desinterested staff
Getting tired of cleaning my chair and table.
Getting tired of being scared to get infiltrated by some kid, having to wait to get disconected,
Seeing fellow patients being treated even worse.
Seeing the cleaner going round with 1 bucket of water through the whole 4 rooms 15 beds clinic.
Reading that it is poss to D for years and that all longtermers (25+) D at home
Having to check if staff change their gloves
Discovering IHD.com
Discovering Nxtage
Really didn't want to go in (clinic) anymore
I really didn't see myself ever putting my own needles in. I couldn't look. But I started pulling my needles. And then I got furious with the fact that it is known that the hours you get in clinic are just to keep you alive. If you actually want to live, I'd have to start putting my needles in. Do home hemo. It's a lot of boxes, quite some work ordering. But I outlived most from my clinic (which makes me really upset cos I told them about Nxstage etc)
It would have been nice to have been healthy for the last 35 years, but it wasn't to be, but I'm mighty glad I'm still here, and I know that's because of home hemo. I'm so glad I made that desicion.
Good luck thinking Whamo, Cas