As I promised, I am going to document my journey as I have done before. Now it is hemodialysis. Holy mackerel. Anyone who thinks this is easy, let them sit in the chair for a turn and see what they think. My husband came with me and will be attending the training with me for the next five weeks. I am going to do home hemodialysis or HHD. I knew it was going to be tough, but had no idea.
I was freaking out so much. They took my blood pressure, and it was astronomical. The center I am going to is small and the training is done in a private room with an assigned nurse. She was nice, I was not. I do not think I have been that scared since the first day when I started at a new high school mid-year.
She said that the day was her running the machine and doing everything without much explanation. That did not sit well with me. I told her about my past and said I would drive her crazy with all my questions. It changed the dynamic between us to be a lot more pleasant. As I calmed down, I got rid of the attitude.
I really did not understand completely how dialysis works. I knew it cleaned the blood but did not get the whole picture. She set up the cartridge and the rest of the machine was already set up for me with solution and the other things (yet to be learned) There is a filter, which is a tube filled with fibers that the blood passes through multiple times. It depends on the prescription. The filter not only removes toxins but equalizes things like electrolytes and some minerals. Things like potassium are put in balance through convection. It other words, it stabilizes the amounts over each pass. So if you have a high potassium, let say, it will leech that out so that it is lower and the dialysate will absorb it. The potassium will pass through the filters and stay in the solution until it reaches a better balance between the dialysate and your blood. Each time the blood passes, more things are equalized. Again, it depends on the prescription how often or the speed in which it does that. Again, this is the nice thing about home dialysis. It is so specific to the patient. And I hope that is correctly explained.
My prescription is very light. I only have to be on the machine for 2 hours. And they are not removing any fluid from me because I do not have edema at all. Matter of fact, my numbers are not really all that bad. The worse for me is potassium and phosphorous. My EGFR was 7-8 and if you use the Cystatin number, it averaged to 11. My potassium has always been high. We decided to start before I got critical and this way I do not have to do dialysis as long and as often. I still urinate ALOT. And that was something that was panicking me. And sure to form, about an hour and 20 minutes in, I had to pee. BADLY. They actually were able to stop the process. They unhooked me and put saline syringes on the end of the lines, leaving the needles in place. I went down the hall, peed, they rehooked me, and I went the rest of the time. I know it was a pain for them, and I will have to figure out something when I am home. But I am hoping with the removal of the crap in my blood, I won't feel the need so bad. My PTH is way up and that is a common culprit of massive peeing. But because I do pee, is also the reason why I do not have to do dialysis for a longer time or remove fluids, which can cause cramping.
There was a ton of paperwork and documents to sign. That helped the time go by. I did calm down eventually, until they had to pull the needles, and then my BP went back up. It took ten minutes to stop the bleeding from the fistula, but I guess that is normal. I have slight bruises today.
I have to admit I feel a tiny bit better. I do not go today but will Wednesday, Thursday and Friday. Then I am off for the weekend. And then I repeat this until I am fully trained and my husband is able to support me. Then we start the process at home with a nurse again until I am on my own. The Company provides everything including a recliner. I have been preparing my room all summer, cleaning out closets and cabinets to make room for everything and decluttering the room. I had a home evaluation earlier and my water and electric are fine. They do come back often to monitor and check on everything. You are also connected through a IPAD they provide.
But..... this is no picnic as many of you know. If you have any questions, I am happy to find out if I do not know the answer.
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Bassetmommer
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Appreciate the description. It's really nice you didn't go through the cramping issue, and may not ever get that. You're a warrior for sure! Hang in there!
It is very common to get legs cramps or muscle cramps from dialysis. When you have a lot of fluid, they pull it out when you do dialysis. If they pull too much water, you can get cramps. Also, if your electrolytes get imbalanced, such that they take too much out it will cause cramping. that is why the first couple of weeks of dialysis is trial and error until they get it right.
Sure, I choose not to do PD for several reasons. I have a large gut and did not want to have fluid sloshing around there, and the dialysate is glucose based and many people gain weight on it.... and I would and I am a diabetic who has finally gotten a very low A1c. I did not want to have to deal with the supplies, which are way more than HD. The thought of having a tube hanging out of me actually grosses me out, And I want to return to my water aerobics in a current channel and would not be able with PD.
Holy mackerel is right. I had my first hemo treatment while I was in the hospital and was pretty much out of it. The third and last one in hospital I made sure they let me sit up in the bed and not be laid flat. I was ready to throw a fit if they didn't. After that I went in center where I go now. Since I still have the catheter there are no needles. I spend the time there watching everything that goes on and I ask the nurses and the center's manager all sorts of questions. I even talk to the other patients when I can. They all know me now and they wave to me as they come or go. I got to see what the needle looks like for when I do get either a fistula or graft so that's no longer scary.
I think since I did PD for months the hemo didn't scare me. Doing it at home alone would. My house is tiny and it's not an option so I'll continue to go in center. My best to you and keep these posts coming...if things change and we move to a bigger house it might be an option.
This is AWESOME information. Keep it coming. Love the detail and as always, your positive attitude and sense of humor are great examples to follow. Even as scary as this might be, this honest description will make it easier for others following in your footsteps if they read these notes. I have no doubt that you will master all of this in short order, so you can get back to "life" other than dialysis. The only questions I have is, you say the filter filters the blood several times, does that mean it goes out of you, through the machine, back into you several times, or does the filter do it's job several times before the blood is returned to your body?
Ron, Bassett may have a different answer and I'll ask Thur but from what I can see, and I have them turn the machine towards me so I can see all of it, that it goes in based on the "speed", mine is 350 what the nurse said is average, it goes in and out of the filter. At one point my "speed" was 300 so not very fast. Now that I can see the machine I ask questions about all the data it gathers. One of the nurses is thrilled I ask all the questions and the other one who sees to me answers all my questions. In fact no one seems like they are bothered by my questions, and I ask a lot...lol.
The machine I use is huge, easily the size of a wardrobe. The one for HHD is much smaller, probably the size of the Amia, if not the size of the Claria. From what I could tell when doing PD in the hospital using their Liberty it's even bigger than the Claria and difficult to use.
I have 2 recliners in my "living room" area and they are much smaller than the dialysis chair. In my tiny home I have the living room, a smalinsull kitchen, and the bedroom with a bathroom. We squeezed in all the stuff for PD and I only got solutions twice a month so I could keep the boxes to a minimum. We have an attached garage which is insulated so that's where I kept the solution. We have a bunch of stuff in there so space is limited.
I did ask and the center I use does have people doing HHD so it's possible there. My primary concern tho is the fact that if something went wrong, bleeding that doesn't stop, the emergency response would be 30 minutes or more if a tractor or such is blocking the road. There is no breakdown lanes just the 2 lanes for traffic.
I had a scare controlling the bleeding after a treatment one day and was completely alone. You only have one hand to work with while you are removing the needle then grabbing gauze to apply direct pressure to stop the bleeding. If you are not directly on top of that hole you will start to see the blood saturate your gauze pretty quickly. It looks like more blood than it really is. You have to let go a sec to get clean gauze. Once you let go to do the gauze switch, if you're not quick enough, your blood will squirt completely across the room. I would try and time it in between pulses but that did not always work. There's an awful lot of blood going through your access point, whether a fistula or graft. Even though I was trained and completely aware of what to do, it completely unnerved me how possible it would be for one wrong move to be detrimental to me living or bleeding out. I could absolutely see how quickly it could happen. It scared me so bad this one time that after a year of doing solo home hemo, I decided to go to center for treatment. I had totally freaked myself out. Once that fear set in, I could no longer muster up the guts to do solo home hemo anymore. It really isn't for the faint of heart. I only way I would possibly go back to home hemo is if I had someone else in the house with me while I am doing my hook ups and pull outs now.
Yes I can see how that would be terrifying. And the way the nurses and techs are able to use one hand is amazing. But, I have my husband and he is being trained along with me. He won't do certain things, but the removal and gauze holding is going to be one of his tasks we will do together.
Thanks Ron, you are always so supportive. yes.... the blood circulates out of the arterial line from the fistula into the machine, through all the lines and the filter and back out and back into the body with the venous line. Both needles are place in the fistula but apart enough so that the cleaned blood does not go directly back into the arterial line. You can actually see the pumping at the site. This is repeated multiple times and depending on the prescription, how long and how often. I am on a very mild prescription. I was surprised at the color of my blood which was lighter than I thought, and I think my husband got a bit whoosy watching it go through all the tubes. There is no pain, (other than the stick because they are 16 gauge needles which is very large) really no sensation other than the beat at the site and...this was big for me because I am always cold... the blood coming back into my body was colder. So as the blood circulated, I got quite chilled. There are ways to heat things and I am going to ask about it.
I always wore my wool winter hat, layers of clothes and brought a blanket from home. I did in-center hemodialysis, so they had warm hospital blankets in their warmer, but they lose heat quickly. I chose in-center because I wanted to have staff around me in case anything went wrong. I really enjoyed being with other patients and asking the staff any questions I had. I drove myself back and forth once I was past the first month and could safely drive. My husband was working at the time, so this way seemed the best for us. The blood is kept cooler in the machine for a reason, I can't remember what. I had three 3 hour sessions on the machine each week and I was able to work part-time for around a year. Then I had stress related cardiomyopathy while on dialysis, so I retired again and haven't gone back to work. I was fortunate to get a kidney transplant in 2020 after over 4 years on dialysis. Good luck to you!
I too chose to stay in center as I live in a rural area and help might take 30 min or more. I've read all of Bassetmommers posts and thought about home hemo but there are reasons I don't feel confident about that. I did PD from Feb to Jun when it just stopped working and I ended up in the hospital in Aug and Sept.
We don't have the heated blankets like the hospital did but the chairs are heated and I bring blankets. I still have the chest catheter but go on Friday to do a non dialysis day vein mapping.
I'm not driving yet as it's taking some time to get my strength back. I do work full time but at home. That works as I do mostly data analysis so working from home suits everyone. In Sept I did have chest drain tube on my right side as I had fluid on my lung area. This still hurts some and is what's keeping me from driving.
I was active on the list until the hospital stays and lost weight so I need to put on 10-15 pounds before I can get back on the list.
CONGRATULATIONS òn getting through your first treatment. Some things you've mentioned are missing a bit of info. Can you share your prescription? I'm happy to fill in what I have learned through the years. Stay strong. Blessings
You are amazing, thank you for sharing your experience with us. I admire you. It's a lot to go through to say the least. I hope when my time comes I can do it. This site has been so helpful thanks to people like you. Thanks for answering questions and sharing what you know. Sending prayers of comfort and strength for you and your family.
There are many reasons. PD uses a glucose dialysate which if you have diabetes can be trouble. Not everyone has a good peritoneal membrane. You might have holes in the membrane which are called hernias. Some people do not want a tube inserted in their stomach which will hang out for as long as they do PD. You do PD at home, and it takes a lot of space for the products and time has to be committed to doing it. PD does not last forever. Eventually the membrane will fail, and you will have to switch to HD. It may be many years depending on how old you are. Hemo cleans the blood more thoroughly than PD. PD can limit things like swimming in certain kinds of water for fear of infection. Those are things I know but it is often a personal choice.
Based on your and others comments I'm willing to look further into HHD. I have some questions for my center to ask on Tues when I go in but in the meantime I'd like to ask a few here. The chair they provide how big is it? I live in a tiny home with just one bedroom but I might be able to put one in there without too much difficulty if it's not too big.
Secondly someone said my dry weight might be off. How do you know what yours is? Since I'm trying to gain weight will that be a problem?
How do you know what your prescription is? I know in center I do 3 hours, three time a week, would that be the same at home? I still pee a lot too so shouldn't that be taken into account? This will be asked of my nephrologist next time I see him.
why do you not all the local inhome center and ask about the size and so forth. It would vary from location. I do not have my chair yet.
Dry weight is a calculation of several things, not just pounds.
The prescription includes much more than how often. It includes how much, how quickly you are dialyzed, how much fluid to take off or not.... and other things that are determined from the labs they do.
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