Wow, it is a lot. I will not sugar coat this experience at all. This week, at my Monday appointment I had a conversation with my Nurse. Couple of things needed to change. One was dialysis four times a week was too much. Next, I did not need more than 2 hours a day. AND.....I went home Thursday of week one with cramps during, after and all night long. Screaming, put a pillow over your face, pain. I told her that if this continued, I would have to rethink dialysis. That got her attention. Even though I told her from day one to NOT pull fluid from me, they still did as an attempt to provide the proper prescription. On day two, they gave me fluid, back at the end of the treatment, because I did not make it to the second hour without my foot cramping. On Thursday, they let me administer the fluid myself as soon as I cramped. But Thursday night was horrible. Teh cramps were everywhere and nothing, all the home remedies did nothing. Fortunately, they allowed me not to do day four because I had an infusion on Friday for Psoriatic Arthritis.
This week, on Monday I wore shorts so they could see my legs. My ankles are the skinniest part of my body. After the conversation, they decided two things: No fluid would be taken off at all and I would only do 2 hours, 3 times a week. This is why I love Home Hemo. It is personal, they listen and you are not passed through like a part in a clog wheel.
The training is something. I am glad I am clear headed when training and not have uremia which can mess with your cognitive thinking. Right now, I am only doing the beginning set up which is putting a cartridge in and prepping the lines. Does sound like much but there are many little things to learn. So many clamps to open and close and which lines go where. But I am getting it. My hubby has stepped up and wants to learn along so he is prepping the saline and will learn to do more. I just did not want to overwhelm him.
After my infusion on Friday, I felt so great on Tuesday I went back to my water aerobics class.
On Wednesday, the tech assigned to me, and I love, did my cannulation. I won't be allowed to do that for a while. Well, she blew through and infiltrated so my site blew up and turned purple. It is still swollen, and I am not sure what will happen today. Fistulas have to grow with use and time. Mine is great, but it is easy when they are new to pop through.
Thursday was only a training day. I practiced setting up and connecting to a bag of fake blood. It is so much easier when it is not your arm things are going in.
I am off shortly for today's treatment and training. The first week, it almost seemed like they were talking Greek to me. Now it is beginning to make sense. Is it easy....absolutely not.
But when I am done training, and hopefully I can stick to the 2 hours 3 x a week, I can do that according to my day. My hubby and I are figuring that I will set up everything before dinner, and then eat and then do the 2 hours. So far, take down is about 2 minutes. You just pull the cartridge with the connected lines and discard. There is more weekly maintenance that I haven't learned. Set up takes about 10 minutes, then you wait 23 minutes while the machine runs tests. And then you prep the lines. Then you have 3 hours to connect yourself, which is when we will eat. And then he will come site with me after he does the dishes. ( He always has done the dishes)
Pros about HHD.... the ease your body, the one-on-one training, and the people. Cons....no one likes dialysis.
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Bassetmommer
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Wow, thanks for your info! Sorry you are going thru such bad cramping. Dialysis never did that to me, but they must have done it better back then, over 25 yrs ago. If I have to go thru what you are going thru now, I am going to say a big no thank you! I have been thru enough pain and aggravation n my life already! My good hospital experience was in Austin TX, but sorry to say my experiences with San Antonio hospitals are no comparison. I hope when you get to do it at home, you have the options of 2 days a week, or 3 at your discretion? Looking forward for your next post!
Thanks for sharing your story. It's good to know what to expect. I can only imagine what some might think when they go in and not know what in the heck is going on or what will happen.
I'm glad the set-up and take-down time are so much better. When my dad was on hemo over 40 yrs ago, I think it took my mom an hour to get him started and 30 min. to clean the machine, etc. Thanks for sharing your experience.
Wow...just wow. Thanks for sharing. If and when I do dialysis, I plan on doing the HHD so I'm listening. Thanks again and hope everything continues as well as it has.
I'm still at gfr 33, but I'm a young 90 (ha ha) and I'm not sure if dialysis is in the future for me. But, who knows. I've always lived much younger than my age. I just retired a three years ago and regret doing that now. Even though I'm fully in charge of my household, I miss staying busy at work and trying to help others. Thanks for the offer of doing chats. I'll surely take advantage of it when needed. You do the same.
Wow, good for you. 90. that's amazing. If you think it would be something you would enjoy, there are all sorts of volunteer opportunities with NKF and AAKP. You would be a great advocate.
Thanks for the volunteer suggestions. Right now, if I can ever get my back in shape, I'd like to volunteer at a local elementary school and help kids with reading. Other than the kidney and back stuff, I'm fairly healthy
So glad you have such a positive attitude Bassetmommer. My best to you. Am curious, how did you know from day one to tell them not to pull fluids from you? Is there some kind of online training that discusses this in advance of doing dialysis? I must say, I think you are so brave. What you describe sounds very scary to me, and confusing. I do not think I would be able to do this at home, with or without my husband's assistance. I will probably have to go into a center when it comes time, which I am dreading.
Fluid appears in two ways.. One is edema or the swelling of the legs, ankles and even fingers or around the belly. I have none of that. And the second is when you do dialysis, you get weighed before and after. If there is a weight change, it is fluid they remove. I have no such weight. In my case, the first few times they took the "normal" smallest amount out and I cramped right up because they dehydrated my muscles.
It is scary but the more I do it, the less it is. Don't say never to home. Check it out completely.
Hang in there! You know it's all a process; not one that you would prefer to go through, but step by step you will find your comfort zone and what your body needs. Warmest thoughts, prayers and support go with you!
Thanks. I'm so afraid of starting. Luckily my gfr continues to hover in the low 20s and my fistula remains unused. My ckd is from dehydration from my ileostomy. EVERY ostomate I've found had had to beg and argue about the amount of fluid taken off. We are SPECIAL. Without a colon we have to fight dehydration. Yet dialysis folks don't believe us. I can't do home hemo. It just isn't possible in my house. I have 3 more years wait on the transplant list. I hope I can make it.Thanks for sharing.
Wow. Thank you so much for being so open and frank about all of this. I have no idea what this is all about and what might be in store for me down the line.. This is really educative, and I admire your approach - and your husband's. I wish you lots of success in coping with this new situation and dealing with it.
Complex, clinical therapy and treatment is Hemodialysis. Staying clear-headed is definitely a necessity. It is a complex treatment those trained to do the job, so you obviously are grasping much of what needs to be learned in such a small amount of time.Wow, alot of information to retain but repetition helps too. Hopefully the dehydration symptoms will remain absent and your future treatments will keep you feeling at your best.
I experienced frequent nausea and vomiting during my dialysis treatments and learned months later from the dietitian in rehab that elevated phosphate (phosphorus) blood levels can cause these symptoms. I lost 40 lbs in 2.5 months just from nausea/vomiting. The Renagel (horse- sized pills) 3 tabs/3X per day were supposed to help reduce the buildup. Anyway, staying on top of your labs, etc. helps.
Thank you for sharing. Hope you continue feeling better. 🙏👍
Thanks for the info. Was you phosphorous elevated before or after you started dialysis. Mine is elevated according to MY Chart, but when I looked on my labs from Fresenius, my first week of dialysis, they were in range.
Don't recall. Too sick from illness, but I assume before dialysis. Was receiving tx 2 or 3x/week while inpatient.Dietitian must have noticed labs. I wasn't eating much because of n/v while in rehab. She advised I continue taking prescribed rx since elevated phosphorus levels can cause n/v & med designed to bind to excess phosphorous in blood.
Hope you can figure out what works best for resolving your muscle cramps 🙏 Miraculously, I didn't have cramping back then.
Your experience and info helps us all with our own issues. Thank you!
Wow! I’m overwhelmed reading this as I’m stage 3a. You are Amazing. Can’t imagine I could do all that very easily at all. Happy days and keep smiling ❤️
Bassetmommer, thank you so much for sharing your HHD experience. I am stage 4 and leaning toward HHD when the time comes, if my veins are good enough for a fistula. I am so hungry for real life information as to how HHD is and I so appreciate your sharing. You are brave and a beacon for others. Many hugs.
Thank you. I am not brave, I am as scared as the next person. It's just the choices I make are a bit more informed. I will write some more about how the training is going. It ain't fun.
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Biopsy Week
I feel like they are trying to kill me. 
WOULD NEVER ASK SOMEONE TO DONATE A KIDNEY FOR ME! 
