It has been the hardest month I have ever had in my life. I promised I would write an honest and complete description of the process.
I started on October 16th. The first week, I wrote about already. Not too many issues. But in my head, I was so overwhelmed. I was not ready for dialysis mentally in any way. I have not EVER felt sick. I have had little to no edema. No shortness of breath or other issues. The only time I was every really bad with CKD was when I was passing kidney stones like a goose or in 2018 when I just retiring and majorly stressed. Once I switched to a renal, and then mostly plant-based diet, I felt fine. I was working out and walking 2 miles or more a day.
Well, that is OVER..... for now. Be prepared to mourn. And no matter what anyone says, you have the right to miss your old life. I have fought the fight of not being sick my whole life with first with being a person of size, then the psoriatic arthritis and then the CKD. And since I still do not feel sick, I was in no way prepared for this process. And I was angry and I still am. But I am learning to accept it.
They started me on learning how to set up the machine on day two. This at first is terribly scary. Then, one day it clicks, and you think, why was I so overwhelmed? I was because this thing, this machine, is taking my blood out of my body and putting it through a bunch of tubes and fluids and then pushing it back into my body. MY BLOOD. Any one who does not see this as scary and overwhelming..... But it does get easier.
There is a plastic (oh, don't get me started on the amount of plastic that is used in health care) flat cartridge that has all the tubes and connectors on it. You pull off the tapes and tighten the connectors and slide the whole thing into the machine and close it. You hang the tubes. Easy peasy and I am not making that up.
Fresenius supplies everything including Bluetooth technology. I have an IPAD I sign into and that is what will be monitoring the machine. I have a Bluetooth scale and I could have a Bluetooth blood pressure cuff, and both send their readings right to the IPAD. I will be using an NextStage machine. Unfortunately. BP monitors are terrible on me. So, I use a wrist cuff one that I can turn off and on with my nose.
Now comes the hard part. This was so difficult at first and so scary. YOu connect all the lines to the various other lines. You have to prime them to let out air, and then clamp them. There are basically five lines. But when you first set it up, it seems like there are a million. You have your red arterial, blue venous, saline line and a waste line and a fluid to the machine line. It is all color coded and the more I do it, the easier I get it. But I needed the time to calm down first.
There is more to setting up and I will get into it in another post. But I want to share the good and then the bad first. The Good is,.... if you can do home hemo, DO IT. The people at Fresenius, or at least my center, are the BEST. I have two clinicians assigned to train and monitor me. One is the Charge Nurse. She is Ex-Army with I believe over 20 years of dialysis experience. She is no nonsense and that's just fine with me. And the other is my Med Tech. We just love her to pieces. She also has multiple years of experience. I train with my husband in a private room. He is learning to do many of the maintenance and help me to do things I cannot do be myself. He is my hero right now. The Freedom Center is staffed with wonderful clinicians, and a heck of a riot Admin. It really is like family. I know I am blessed to be there as I know I would not have handled an in-center. My Nephrologist, who I have had for over 20 years, sees me every month right at the clinic. The best thing is they listen. The original plan was for me to do four days a week, 2.5 to 3 hours a day. NO way did I need that. And they were going to take off fluid. The couple of times they tried it was horrendous with the cramps. Not only there, but at home all night. So now, no fluid. As I develop edema, they will address it. So for now, my prescription is 3 days a week, 2 hours.
But here is the bad..... they will not know for a while if that is working and is enough. I had a bad couple of weeks. Two weeks ago, on Monday, they blew through the fistula. It is called infiltration, and it means they went through the vein and popped put the other side. And instead of just stopping it, another clinician came in and poked another place up higher and did the same thing. I will not lie. It was extremely painful, way worse than the surgery. I could not move my arm. They iced it and sent me home. That night I lost it completely. I had a complete and utter meltdown. I cried for hours. The arm blew up and the bruising started. But it was more than that. It was everything. Wednesday, they tried again but the arm was so injured, I was given a reprieve until the following Monday. My arm looked horrible and was in pain for days.
For now, only Nurses can cannulate me. The fistula was too new and needs to harden and get bigger. It was no one's fault really, and it is common to go through this. But it still hurt like a MFer. Two weeks later and it is much better and this week, I was able to have three treatments.
So now I am more comfortable setting up and putting the lines together. We, my dear sweet hubby and I, are learning to work together on things like removing the needles and we practiced cannulating yesterday on a dummy arm. I am beside myself with how amazing my husband has stepped up to help. We pulled needles together on Monday and I spurted a bit a blood on him. He turned white. When we got home, we talked, and it finally hit him what was happening and how much is involved. He is willing and ready now. He too has to learn to accept his fully capable, full on energy wife, who manages everything is not the same anymore.
I will write more because there is so much more. I do want to encourage anyone who is deciding what dialysis to try to go to a home center and check it out. It is possible to do home hemo by yourself. I am learning how to be mostly independent. They have all sorts of tricks and tools to help patients who are by themselves. But this is the best part. You never are really alone. I was afraid that they were going to toss me home before I was ready. Nope. I will probably be training there for another couple of weeks, or as long as I need. Then THEY COME TO ME IN MY HOME FOR AS LONG AS I NEED. I was shocked to hear that. They have had patients who they come out an cannulate for over a year. There is 24 hours clinical and tech service. And there is respite if you need a break and want to come back in house for a bit.
This is long enough. There really is a lot to this. Is it all sunshine and roses? Nope. But if I have to do this, I am glad I went this route.
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Bassetmommer
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People think I am silly because I am obsessed with a song: 'Ordinary World" by Duran Duran. (check out the lyrics) Between the CKD, the Giant Cell Arteritis, the Polymyalgia Rheumatica, SLeep Apnea, and now learning I will start chemotherapy to try to save my kidneys from a disease just identified as MGRS (monoclonal gammopathy of renal significance), I am grieving. Grieving for the person I used to know. You have my empathy. I also have been fighting health issues for decades. The need to constantly re-invent who I am is exhausting. We are warriors. Courage is not just fighting a war, some days courage is just getting out of bed and facing the day. I live in a rural area. If I end up with dialysis I would prefer home dialysis. Thank you for posting this.
I sure understand being overwhelmed. I started PD in Feb of this year and while it went well for awhile and I was working in the office, traveling, living life that came to a itchy, tremor, starving end in July. I still have no idea why PD failed so spectacularly. I went in the hospital in Aug and I was so bad off I had no idea what was happening. At one point I thought I was going to die, I saw God which actually calmed me. My husband, thank goodness, made a lot of decisions for me. My neph partner who is awesome had me get a chest catheter for hemo. The one on the right didn't work and caused bleeding and fluid in my right lung area. So now I have one on my left.
NOW that I'm mostly clearheaded I'm kind of freaking out. Since I had the PD catheter I understand the risk of infection so I had vein mapping done and will most likely have a graft due to my tiny veins (along with my tiny self). I'm still not comprehending the needles and when I think of them my chest gets tight. I have no problem with needles, thank god cause during my Sept hospital stay they took blood every single day.
You are brave and you are strong! Your hubby is too. I did home hemo for 2 years, but eventually gave up on it. It felt like too much work while I had a full time job. It might have been manageable if I were retired. My prescription was much longer than yours because it was done slowly overnight 4 nights a week. I could never really sleep well with the machine on. God bless you both. I know it’s hard but you can do it and live well!
I am in awe of anyone who does dialysis and works. I just cannot imagine. And although I am crying and whining here, I know that the real warriors are the younger ones, or who have family and work and have to do dialysis. There just has to be a better way to make life easier for all. Right now, the training takes up every afternoon for four days for a minimum of five weeks. It is taking longer for me because of the fistula issues but even in a perfect situation, it's a commitment.
I am overwhelmed by reading your first month experience on home dialysis, and I have major respect for you. You appear to have a very strong will, and I salute your determination. I hope it will continue to become easier and easier as the days go by. You are blessed to have a great partner in your husband.
Thank you so much for sharing! It’s good to read an honest report on experiences so we can be more prepared for when / if that stage comes. It does sound daunting .. scary.. but you have pulled through. You’re doing it - and maybe I can, too, if I need to. Thanks again, and please keep sharing! ❤️
This is why I decided to write this. When I was getting ready and trying to determine what to do, I got a lot of sunshine blown up my butt about how wonderful it is. And then you get there and it isn't. I like reality. Its not like dialysis is a choice anyone wants to make, but they totally desensitize the experience in any class, video or materials I had or saw. It was not until I was already on that I found a YouTube video that was real. Would I have changed my mind, probably not. But I do not think I would have been as depressed or overwhelmed with more actual exposure.
Firstly, congratulations on the way you have verbalised your journey, and for your courage with all the trials and tribulations you have encountered.I considered home hemodialysis, but the idea if trying to needle myself ( or if my wife doing it for me) was, to me, frightening. The other obstacle (to my mind) was that I could see the nurses "getting it wrong". To me, with their experience, if they were struggling,, what hope did I have?
Apart from your problem ( which I also experienced) of problems with the fistula, which at the beginning, was being criticized by every single nurse, I have dreadful problems with low blood pressure. I have woken up ( on far too many occasions) to find upto five nurses around my couch, having been put on oxygen, with my feet in the air, and my head low down.
I have since been prescribed Midrodine ( which raises low blood pressure), but, if I was to stick to the prescribed dose, I would still be regularly collapsing. I have learned to gauge my BP and preempt problems. It works, but I dare not try to get help from either the nurses, nor the doctors. I am supposed to take a 7.5 mg dose three times a day. Most days on dialysis ( three times a week for four hours each time) I end up taking up to 20-25 mgs, without which I would never get through the sessions. As it is, each day after a session, my BP is far too low ( around the 80/55 mark) I have learned to deal with it on my own.
There is no way ( to my thinking) that I could subject my dear wife to trying to deal with trying to take care of me during home sessions, even if we could cope with the needling. As it is, even the nurses still regularly get through three or four needles per session on me . The usual problem being that I am hard to needle correctly ( and often end up coagulating while they keep trying to find ,"the right spot").
Like you, I found the whole process frightening, although after 20 months, with my own methodology of dealing with BP problems,, I can usually cope . The downside of that is that I have to be secretive about the doses I take, and, emotionally, I find myself feeling angry at needing to behave the way I do. I am always careful never to exceed the daily maximum dose, although that means forgoing a lunchtime and evening dose of the medication. I am being dialysed on the 7:30 until 11:30 session ( which entails being up at 05:00 on dialysis days, to be ready for the transport I have to use, thankfully provided by the unit. There is no way I could drive home after a session, and I could not subject my wife to bringing me in and picking me up.
All in all, it all works, but it is hard, and not ideal.
I wish you the best, and hope things go well for you.
I also need to apologise for the length of this post; I too need to unburden....
HI Mich, I am so glad you shared also. This is what this forum is for. I was appalled at your situation. But I have heard it is not uncommon. We have to self-monitor our blood pressure. If I was on the Bluetooth, it would automatically check it every 20 minutes and send an alarm if it is too low. Then we are supposed to give ourselves saline. I have not had that issue, but yesterday it was down lower, more than any other time. Kind of scary.
The anger is real. I keep going over in my head that why does this have to be such a terrible experience. Its all due to money, short staff and the overwhelming amount of people who are now needing dialysis. And it is only going to get worse until we patients advocate for better treatment.
I was surprised my hubby is as involved and supportive. I did not want to burden him with all this. Best to you and I hope things get better for you.
Does anyone know why BP drops like that during dialysis? I make sure to watch mine and I've noticed that when I first sit down it is around 140....during it drops to 124 or so. Only once has it been low enough to cause concern. I don't take my BP meds on dialysis days until after.
Hi horsie! Usually, low blood pressure is as a result of fluid removal. But really, the whole process of dialysis is a strain on the entire body. If you have any heart problems, that will add to the problem.I was told at the beginning that I couldn't be fitted with a neck line, because of my history. I had a cardiomyopathy some years back ( apparently caused by a virus), then had problems with an arrhythmia, then I went into AF. I had an ablation, followed by a cardioversion. Thankfully, I am now in sinus rhythm with an ejection fraction of 56%. All that takes a toll on the heart.
One thing you mention is not taking medication before dialysis. That is a very good idea, and ought to be applied with all medication usually secreted through the kidneys. Dialysis effectively washes out everything; I make sure you o take all medication after a session, rather than first thing in the morning.
Thanks Mich. luckily I don’t have heart problems except moderately high BP. My EF was 66% this last echocardiogram this month. My dad had heart problems like what you mentioned and died of heart failure at 82.
When you are on the machine, your fluid levels drop. Think of a tube with a ton of water in it and you start pulling some of it out, the tube loses pressure. Same deal. I was told they do not worry until the top number stays below 120. I was close this Friday, like you, at 124.Funny thing is if I was not on a machine with a BP over 120/ 58 I would be doing a dance. Mine runs at 150/ 63 off the machine. BP goes up as the body collects and holds on to water. Again, think of the hose now past capacity and being stretch. That's BP.
I guess it's welcome to a new normal. OMG the process sounds so arduos. Not only does it seem to be a big change physically, it is also a big change to your mental status.. Praying the procedure becomes easier to manage. Thank you so much for sharing and giving us the low down on what it's all about. Take care and hope you can enjoy the Thanksgiving holiday.
Wow that's a lot to endure. Thank you so much for sharing your experience. I hope the following days get better for you. Prayers for you and your husband💗
I, of ocurse, have a million questions. I still have a catheter (have had it since October 2020). I do not plan to get a fistula for numerous reasons. I would love to be able to get out of my Dialysis Center (I am living a nightmare twice a week.), but I am afraid to do home hemo by myself. You mention Fresenius - where are you located? If you had to do this absolutely alone, (from start to finsh) could you? Are there things that could go wrong where you could be in serious trouble if you are by yourself? I live alone (my husband passed a year ago this month) . I am basically independent, but still not sure if I am independent enough to do this by myself. What do you think?
The best thing I can say to you is to contact Fresenius and see if there is a center near you. There are other companies that do this so if they are not in your area, Google to see who is. You have nothing to lose by investigating the possibility.
I will tell you this. They go out of their way to make the transition into home care as easy as possible. They have all sorts of ways to make single care possible. You never are really alone. I do know that my center has several people who are single users. They will not let you be alone until you are safe.
Could I do this alone? Absolutely. I am actually being taught how to do things on my own because I did not think my husband was going to be able to help. He hates blood and is not good with other people being sick. If you stick with the chest catheter, it is a lot easier because you do not have on arm tied up with needles in them. One arm is pretty much useless right now because I cannot move much because of the newness of the fistula. And you do not have to cannulate (stick yourself).
Find out what you can and you can also PM me here in the Chat if you want.
Generally I run from explicit medical descriptions, because I'm one of the biggest cowards in the world. But I stayed with your story, knowing it would be very helpful, maybe even life saving to me in the future. Thank you, thank you for being candid.
I have to tell you, I don't know that I would go through dialysis after your sharing. Yes I know that there is certain death if I forego it, and I'm sure it ain't pretty. I would hope and pray for a good palliative program with Hospice, and at least I would know that the end is in sight.
I hope I don't shock anyone with this kind of talk, but what I'm getting from this is a personal terror of torture. I've known people who stopped dialysis after a few tries in the hospital. My sister in law was one such person, and her daughter stayed with her to the end. She was unconscious nearly the whole time.
I'm not talking about euthanasia or anything like that, because I don't believe in it. I'm just saying that for me and others like me, there is a time that we're allowed to say, no more extraordinary measures.
But I wish you the very best possible future, and you sound like the person who can do what it takes to have that.
Lady when I was so sick in Aug I thought hard about just letting go and no more dialysis. The thought of never seeing my granddaughter kept me going. I have nothing but respect for those who chose a different path.
horsie63, I have no grandchildren, so don't have that to consider. I would have a hard time deciding to put my husband through the dialysis work. Frankly, I'm not sure he could help me much at 85 years old; it would be hard on him either way.
I have already stipulated no extraordinary measures regarding my emphysema and congestive heart failure. To me, they're all bad, and I don't see much point in hanging onto life with 3 co-morbidities. I would be scared, yes, but I have a certainty of a new life on the other side.
I may change my mind; I don't know for sure, but right now I'm leaning in that direction. And like you, I would never fault anyone for their own decision. I appreciate your thoughtful response.
Lady Prudence, I've had hemodialysis in-hospital with some of the best nurses around. They are so expert in what they do, however, things can go awry there too. For me, dialysis continued 3 months before my kidneys began functioning at normal capacity again.It was sometimes very frightening during this process. My bp bottomed out once or twice and it felt as though I was drifting away to another world. My husband was not allowed into the unit, so I sometimes felt alone and fearful.
I am fearful of being alone when it's my time. I want my loved ones with me if/when the time comes. Not everyone wants to prolong. I've already survived near death experience so I too don't think I'll elect dialysis. I respect those who want to though.
Lady, the whole process is scary and there is nothing to be ashamed about being scared. I am and will always be because it is scary. But life is scary if you want it to be. Have I thought about Hospice? Of course. Two Mondays ago, when I was in agony over my arm, I told my husband that was it. I was done. I was really at the bottom. I understand it is your choice. But make the decision out of an educated opinion and not emotional. There is no going back once you are dead. What we put in our heads is aways way worse than the reality. Go check things out. There is a lot to be said about in-center care. You show up, sit down, they poke you, you sit and socialize, read, watch TV or sleep, and then when you are done, you walk out. And life goes on because you feel better. You do not have to worry about equipment or not having someone watch and protect you. The machines are stronger, so they clean the blood better. There are other patients to share with if you want. There really is a lot good about in-center. Think about it as going to the hairdresser to get your hair done. I really hope you will take some time to check out a center, talk to your doctor, talk to your family and then do what is in your heart. Death is easy, it is harder on those we leave behind.
Agreed Bassetmommer. Thinking about leaving my loved ones is hard for me, but I've had a good life and will try each day to be here to love those who are my family for as long as I can. We each have to do our life as we feel is best. My family knows I'll fight to be here and they respect my decisions.You are an amazing person. Your sharing the journey gives us much to ponder. I pray for your success and well-being.
Well, you're saying things that are common sense. Fear is nothing to be ashamed of. I'm not ashamed. No, I do not want my life to be scary, and I feel like I'm handling things pretty well. I make the important decisions out of an educated opinion; I'm allowed an emotional feeling or two. There is no going back once you are dead. You think I didn't know that? What we put in our heads is not always worse than the reality. Go check things out? When the time comes for me to make the decision, I was planning on doing that anyway. I cannot think of it as going to the hairdresser. And finally, I've never heard anybody say death is easy. Those I leave behind are with me in whatever decision I make with my final days. We have discussed it.
People opt out of dialysis all the time. It's acceptable; it's respected; it's between themselves and their God. It's their own decision.
Bassetmommer, I apologize to you and everyone in the Forum for the unkind things I said to you earlier. You're going through too much for me to attack you in such a way. Please forgive me. I hope you have a Happy Thanksgiving.
Lady, I heard nothing but your own frustrations and worries about what is happening to you. So no worries. We all are struggling and that's why this is a good and safe place to say how we feel. Happy Thanksgiving to you and your family.
Yes, and that is the reason that at this point I feel that I will do everything I can do.It is easy for me to say being in Stage 3 but i just do not want to be thought of as someone who gave up.I feel as if I have fought for survival all my life and most often not having to do with health issues.It has nothing to do with me at age 71, I do not want to leave loved ones as long as I feel there is something I can do about my situation.This is me now but who can predict the future and of that I am well aware.
I’m leaning towards your approach if that time comes for me. I don’t see me going through dialysis but I would consider a transplant. Praying I don’t have to make that decision one day.
I greatly appreciate the info from you and the others who say they have the chest catheter instead of a fistula. I had the chest cath when I had dialysis in the hospital for 6 months. That was 28 yrs ago, Now I'm @ the stage where they want me to get the fistula and I said no way. I was told all my veins and arteries were damaged by the sepsis I had. I've also beeen scarred up from having blood tests in the same arm for 28 years. They are telling me I cant have a chest catheter and go home with one. They say I can only have that in hospital! I say BS, from what I've read on this blog. Also, my husband is 82 and I would have to drive over an hour to the city to the dialysis clinic run by the group my dr is in. New info I jst discovered there is a fresenius center near me, but my dr doesnt practice with them, so guess I would have to change doctors?? No way are we driving to the city 3x a week to get my worn out veins stuck with needles! Also, I have asked for info on the possibility of having the hemo machine @ home and having my husband trained to run it, and they wont even return my call! I am running out of patience with spiking blood pressure and angina problems now, as well as heart attack symptoms and am fed up with the drs here in south Texas now. Unless i really feel sick, I wont agree to dialysis unless I can have it on my terms. So, do I have an unrealistic attitude, or what?
So much in your response. Let me take them one at a time. Every place is different. As far as the chest catheter, I know there are people at home with them do self-home hemo. They don't like them because of the risk of infection. But there are people who do HHD for years on one.
You would have to have a medical doctor who practices at the center you go to. I was lucky mine does practice at my center. I will see her once a month. So much better care than then every six, then three months. It is not a bad thing to have an HHD center doctor because those doctors are especially trained for dialysis patients. So, it's not a bad thing. And I think you can still see your old Neph if you want.
If you send me a private info in the chat system here, I will contact my contact at Fresenius to see if there is someone in your area that can help you.
Although I may be scaring some, if I was doing this on my husband, instead of myself, we would be home by now and flying through it. Its harder when you are the one doing most of the work and it is you in the chair. As my Hubby buys into more, it will be easier. He has his own fears and issues and I get it.
Your last statement is ME complete. I did not want to start dialysis on anyone else's terms but my own. Did I start too early. YUP. No doubt about it. But here is why I chose this. Although my Neph would have waited, she wanted me to be a clear in the head as I could be. As your kidneys deteriorate, you get uremic and that makes you very foggy headed. I was not either, but my BUN was increasing and so was my potassium and phosphorous. It was a matter of months or maybe even weeks before it would be bad.
My personal reasons are I did not want to be in the middle of a crisis and in the hospital or something over the holidays. Although I thought I would be home by Thanksgiving, its ok to not be. But driving back and forth four times a week and being there all afternoon is getting old. I also knew I did not want this when winter hit. I HATE driving in the snow. So now, I should be home and up and running before Christmas and my husband and I can schedule as we need to, to do the 2 hours 3 times a week. If there is a day that I am supposed to do dialysis, and say it is a holiday, I just do it the next day. If we are doing something at night, we do it in the morning. That is why this is so great. Our plans are that I will set up to a point, make dinner, he does the dishes (I know, he is a keeper and has been doing this for ever) I go prime the machine. He comes down with his IPAD and we sit for 2 hours and then get me off the machine. The I can do TV or whatever and go to bed. That's the plan and I hope it works.
They need to find a better way to cannulate, I had the pleasure of using my virgin fistula twice after a surgery (umbilical hernia repair) a couple of weeks ago. I can’t imagine ever being able to do it myself, the thought is just too scary.
NO one likes the idea of hurting themselves. As I wrote above, they have a button hole technique that once you establish the holes, you use them over and over. Think of earring holes. They do not hurt when you put earrings in.
No and only because I want to be able to go back to the pool to work out. They do not like you to do that method if you are in a pool because you can soften the scab and bleed. If I wasn't, I might.
I can tell you only this. Four weeks ago, my fistula was terrible. This week, they poked me three days in a row, no problems. It will be a while before I will attempt to do myself. I was worried about that, but they will come out to the house for as long as I need them to even just cannulate me. They are training both of us on dummies and it really is not that hard.
I get all of this is a good thing. I get that it becomes easier as you go. I like the stories of couples who can bond over such an effort to live with this.
Then, something in me says: Bringing it home means you're digging in for the long haul. In my head, it feels like I'm resigning myself to forever being attached to the damned machines. It means that I'm accepting that my wait for a kidney may last longer than hoped.
I haven't needed to start dialysis, yet. Although I have a fistula all set and ready, I hope I never have to use it. I guess that so much of this was hidden from me when my mom went through the process. I'm not sure if home HD was available in the 70's. I don't think she'd have done it, either.
I guess I'll continue to take it as it comes. Not much else to do. I'll depend on you folks to bring me (mostly) things to look forward to.
You are where I was a year ago. Things were going smoothly. GFR stable, low but stable. Most of my labs were good and stable. I thought I had conquered this. Then, Spring comes and things started to creep up. Mostly Potassium, Phosphorous, BUN, and PTH. All signs of failure. I saw the Neph in June, went for the fistula and was hopeful. She and I talked about when to start and we said we would do labs every month to watch. The GFR went down every month, the others up. Was it critical. NO and could I have gone more months with out dialysis. Absolutely. But I wrote my reasons why I started.
About the long haul. Yes, you hit the nail on the head why this process really depressed me. This is it for me unless I get a transplant. And I am not sure that will happen. I am on the list, past and approved and have two and a half years already clocked in. So yes, dialysis is for life. Daunting as hell to realize that and accept and truthfully, I haven't yet. But I must. It is just the way it is. I have to switch my thinking around and be grateful there is something to keep me alive. I watch my Father-in-law die of kidney failure with no dialysis. Not a good thing.
Did I feel bad before? Well here is the funny thing. I did not THINK I did. But yesterday, after 3 good treatments. I felt the old energy come back. I did not have that heavy feeling, the I want a nap at 2:30 feeling, and I slept great. So I will concede, it is working
Thank you for sharing. I'm esrd not yet on dialysis delaying as long as I can. I'm not ill do have some edema in my ankles and legs not horrendous. I appreciate hearing what all is involved in hemodialysis. I have talked with my nephrologist and we have decided to give peritoneal dialysis at home a try when that time comes. I love hearing your journey because if for some reason pd doesn't pan out then I can go to hemodialysis. Hoping your journey gets better as time goes on. Good luck.
The Fresenius Center I am at does PD training for home. WE met a couple who do it and were in for their monthly clinic visit. They love it and it is pretty easy. Check it out so you can be prepared.
I started with PD with the thought I didn’t want anything to do with hemo. After I healed from the catheter surgery I started with training and flushes to make sure everything worked.
The training was 4 days for 3 hours for 3 weeks. It went well. The PD nurse came to my home to make sure I could do it there on my own. I live in a one bedroom house with sn attached garage that is insulated. I have 3 dogs and 3 carts. If you ou have animals make sure they aren’t in the room when you hookup and disconnect.
I started with 3 exchanges with a 1.5 hour dwell 7 days a week. I worked from home as it was impossible to do the exchanges at work.
Then I got my cycler a Baxter Claria. I then did exchanges at night so I could go back to the office and travel. The 6 liter bags are a bit heavy and come 2 to a box so the boxes weigh about 30 pounds. I got my orders every 2 weeks so I wasn’t overwhelmed with supplies. Even so there are alot.
PD worked for me for 6 months and I’m still not sure what went wrong but now I do in center hemo. I had to get an emergency catheter in the hospital and in Dec will get either a fistula or graft and once matured will have the catheter removed.
I feel good on hemo… got my appetite back and am walking on my treadmill again. Other people do extremely well on PD so don’t let my experience discourage you. When it worked it was great.
Hello allene7, I thought I’d throw my two cents in. I’ve been on PD for a little over one year. While my success with PD has been very good to the point that I spend more time talking about my doctors kid and life than we do talking kidney. My numbers have been fairly consistent once my body adjusted to PD. But all that said I see all the people on Hemo and am a little jealous that they don’t have to hookup every night and can sleep without a leash. PD made a huge difference in my life. I used to be a night owl and comfortably lived with six hours of sleep a night. With all the hooking up, disconnecting, wound care, and cycling I need to be in bed 8-9 hours plus an extra hour to unwind. Plus traveling is difficult with transporting all the stuff and needing to be no more than two hours, preferably one hour, from the transplant hospital it really limits travel. If i was on Hemo I would at least be able to have a couple of days together that didn’t require dialysis. This would make getting out in the wilderness more doable. There is nothing more healing than a morning looking out at a mountain lake with a cup of hot tea.
I shouldn’t complain as I have a great doctor and dialysis team and there are so many people worse off than me. I guess at a year I’m having some buyers remorse.
My hubby's PD nurse told him it was fine to skip a day/night when traveling or through power outages, etc. since he was on the cycler consistently, keeping him quite healthy. You might want to ask if this in option for you too since you seem to like getting out and about. Being on a transplant list, though, definitely restricts one too. One don't want to be out of range. Our transplant center was a good two hours away, they gave us three or four hours to get there - the kidney was kept on a pump.
I am so very impressed at what you have ccomplished ad your willingness to share. Bravo...For me it wounl not be an option because of the amount of animals I share my life with and so keeping things as cleas as necessary is a no go.. plus living alone.. if and when the time comes I will just assume those 3 hours per session and three times a week does not soud too terrible. There is the opportunity to chat with others... catch up on reading and leave the mess to someone else...
I have had 4 over time. I was on the Board of a Basset Rescue. One was a Basset-Lab, and is my Heart dog. He weighed 115 pounds. Then Toots and Bubbi were purebreds and around 65 pounds, each. Then we had a springer-basset again over 100 pounds as a foster. Right now, we have two little doggos we rescued and have had for ten years. They are a mixed bag of love. We will probably never have another Basset as they are too big for us to handle. But if you want to see me turn into a puddle, show me a Basset. I think I was one in a past life.... lolol
I had a sweet Bassett... Named him Abraham..I was a non profit feline rescue..moved 50 alone to my new rescue alone spnt all my money for them... promised them a great home and so when after 20 years they crossed the rainbow bridge...they had a disneyland here i built for them... I still have one Blue..he is 23... had a rear leg amputated due to cancer a year ago and is still doing great..wakes me up for treats several times a night.. I have a rescued terrier mix who is three and my 3 disabeled pigeons..it is what life is about..
I am so sorry... if you want to refresh your soul do a virtual tour of BEST FRIENDS in Kanab Utah....I used to go and do working holidays there.. meet the most wonderful peopl
Ok, just catching up with all of this. You promised to detail your adventure with hemo, and you are doing a most excellent job of giving folks the reality of it all, the good, the bad and the ugly. I am not sure, but to my thinking this is the best way for folks to get prepared for their own journey rather than the less than detailed version your neph or the center's "tour" and educational programs provide. So keep it up. Keep the details coming! I'm learning a LOT through you in case I ever have to switch from PD like horsie did. An even though your description let's people in on the serious side of it, I still feel your sense of levity coming through all of it, which is awesome. You are still in there! I can feel you in your words. You're just awesome.
Thank you for sharing your Journey...I am on PD and didn't think I was sick either... But after Dialysis I knew I was..I have been on PD for almost 3 years now and it has become a part of me...the time and effort is worth it...especially when look In the mirror and see most of my bags are gone from underneath my eyes...and my cheeks have a nice fresh glow...I completly understand your Hair DresserAnalogy....I call my PD my Beauty Treatment...and yes its for the rest of my life...so is brushing my teeth..
Congratulations on helping your body so your body can help you....
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Need advice about fistula please
Hemodialysis 
