Posted , 5 users are following.
My gfr is 11 & the doctor thinks I'll last 6 mnths. Got an intro to home dialysis & was overwhelmed by the amount of equipment. Not even sure if I've got the room without moving someone out. It a daunting thought cause even now I'm searching for quality of life. How do people accommodate all the changes. Hate to be a bigger burden on people.
0 likes, 10 replies
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marj01201 john85166
Posted
John,
Which type of dialysis are you planning to use; PD or Hemo? I'm assuming you're planning to do in-home dialysis.
I'm not there yet but will try PD dialysis when the time comes. I live in a small, modest 2 bedroom townhouse--essentially an apartment with an attached garage.
I joined this forum with the same question you've posed. Most who responded talked about storing supplies in their garages and moving only what they needed for the week into their homes each week.
I will definitely plan to do the same as far as using my garage for my supplies. I'll then move what I need into my home once a week. I'm planning to store most of my weekly supplies in my spare bedroom closet and a standing cabinet with doors in that same bedroom. I think the PD cycler will fit in the spare closet in my master bedroom. (I'm planning to get a rolling cart for the cycler. Then I can just roll it into the closet during the day when it isn't in use. If it won't fit in that closet I'll roll it back into the spare bedroom.
As may be obvious, I'm trying to come up with ways to store this stuff where it is essentially out of sight when not in use. I'm hoping that will keep my home from feeling like a hospital ward.
My primary remaining concern has to do with trash removal. It looks like this will be a lot more trash than I currently generate on a regular basis.
As far as quality of life goes, I'm fairly sure I'll feel better when I start dialysis. I should definitely be able to eat more normally. Plus my appetite will likely be better.
I'm a university professor. I do still plan to work full time while in dialysis. I'll try the cycler machine with the hope that it will work well for me. I kind of like this the idea of multi-tasking at night, ie, both sleeping and doing dialysis at the same time. If I'm able to sleep fairly well that way I don't think PD dialysis will interfere much with my quality of life. (I am single, though, and live alone.)
I travel as a part of my job--give research presentations and so forth. I do plan to continue traveling but expect that it may require some change of routine for me, however I expect that that will be doable. Frankly, I'm so thankful that there is a dialysis treatment I can perform independently in my home--I feel very fortunate to be able to continue working--I truly love my profession.
I've moved past my initial shock, fear, frustration, and anxiety related to all of this. I'm finally at peace with my renal situation. It certainly has, and will continue to, changed my life significantly. But I will still be able to do what I love doing. And, I've got a good medical team supporting me. So I'm committed to making this adjustment and doing the best I can with the inevitable transition when the time comes.
For me, it has been most helpful to hear such encouraging stories from others in this forum who have experienced dialysis and have lived good lives while receiving dialysis. But it has taken me some time to get my brain wrapped around all of this.
Others will post and share their experiences with you--I just encourage you to ask any questions you've got--they're all good questions. And, I'm sure that most, if not all, of us have experienced many of the same concerns you're experiencing. So please don't hesitate to share those with us as well.
Marj
john85166 marj01201
Posted
Peace of mind only after full acceptance that dialysis will happen. I'm down for hemo cause I've no option. Sad to lose the cosy bedroom. So much strain on the family. Equip is size of double wardrobe plus water filtration and plumbing. The dr thinks I'll be better on the machine but the patients i saw today didn't look too good. Not sure if i believe anything anymore. Maybe i can have a wardrobe built around the unit for some discretion. Not a good look for visitors. Its a nightmare but life goes on.
marj01201 john85166
Posted
My Dad was on in-home hemodialysis approximately 30 years ago. He had a lot of other serious health issues. My Mom and I were his care providers. He didn't have a fistula so it was pretty frightening--I'm not sure why he didn't have a fistula but suspect it had to do with their financial situation and medical insurance.
He definitely did not feel well while on hemo. But, as I said, he was very sick with numerous medical issues. Over the past 30 years the medical community has improved their skill as relates to dialysis. There have also been changes for the better with regard to electrolyte imbalance management. Of course following the renal diet is critical along with exercising and taking the prescribed meds.
It is my understanding that those with few other significant additional health problems who are performing in-home hemo on a daily basis feel and function pretty well. It makes sense that doing dialysis daily will help you feel better. It should also be easier on your heart.
The sanitation is important. But my Mom and I adhered to Dad's protocol consistently. He did not ever have an infection.
My primary concerns about hemo were related to what I saw my father experience with it. And, since I live alone, I would not have the option of in-home hemodialysis.
However, as I was considering my options I had come to the conclusion that in-home hemodialysis administered on a daily basis would be a fairly decent option. I just realized that it wouldn't work for me because I don't have a care partner.
One of the more humorous memories I have about Dad's hemo situation relates to my Mom and I arriving at the dialysis center the first time for training. My Mom was an old order Mennonite--very similar to the Amish. She didn't drive. In fact, she had not used a washer or dryer at that point in her life. She still wore the old order Mennonite bonnet and dress.
i remember thinking as I drove us the 90 minutes to the dialysis center for training, "How likely is this to work?" As I'm sure you can imagine, the staff at the dialysis center were quite surprised to discover that they would be training an old order Mennonite woman to provide in-home hemodialysis.
We had had our home wired for electricity. The plumbing had been modified. But my Mom had never used any electric appliance let alone run a machine like the hemodialysis machine.
We arrived at the center for training. Much to our surprise we discovered that my Mom picked the training up very quickly. That first day in training it became clear that she would be able to do this.
We left the training and went to an appliance store where we selected a washer and dryer for Mom to begin using as well. (I bought this for her after convincing her that it would give her the extra time she would need for Dad's dialysis sessions and would help her maintain a sterile environment for Dad.)
My Dad, who was extremely sick with numerous additional complications, lived with in-home hemodialysis for just about 3 years. During that time I went home every weekend to provide dialysis for him. My Mom provided dialysis for him on week nights.
This was the decision my Dad and Mom made regarding his care. It allowed them to get their mortgage paid so Mom would own the house--something that was incredibly important to my Dad.
When I think back on all the changes in-home hemodialysis required for my Mom, I can't help but think that it is doable for those who choose this treatment option today. Initially it was a source of strain for the family. But as we went through training and learned how to administer it, that strain subsided. It essentially became our new normal. My Dad's sense of humor was invaluable throughout. But it was, unquestionably, a MAJOR change for my parents. However, it was a change they willingly made.
This is absolutely a major change for anyone--and a change none of us would ever want given a choice. Of course, you can change your mind and discontinue dialysis if you're not feeling better.
I ultimately decided I couldn't make an informed decision without trying dialysis. However, if I'm not feeling and functioning fairly well with dialysis I do expect I'll decide to discontinue treatment. After all, why would I drag myself through treatment only to feel poorly.
I'm actually the last person in my immediate family still living at this point. So I'll be able to make medical decisions based solely on what I want to do without concerns about how my decisions will impact other family members.
Marj
PS My Mom kept the washer and dryer and continued to use them after my Dad passed, in his memory. He would have loved to see that🐶
john85166 marj01201
Posted
The hemo machines are prehistoric. Not much research has been done there. When u thk the money spent on missiles and space travel its a disgrace.
marj01201 john85166
Posted
I agree. I've been shocked at how little the technology has advanced in the 30 years since my Dad was in in home HD dialysis.
bert74483 john85166
Posted
Hello, John. I was sorry to read that things aren't going too well with you, but I think that with a GFR of 11 you should have considerably more than six months left to you. I have been at GFR 6 for a year now and I'm still scraping along!
After a lot of thought, discussion with family and so on, I decided not to take any dialysis route and opt for Conservative Care. The Dialysis Centre is too far away for a three times weekly visit and my home is far too tiny to accommodate the necessary equipment.
I am too old and set in my ways to consider moving but 'your mileage might vary' as the ads say! We are all of us different -- and unique.
Good luck with your decision, whatever it is -- and enjoy Christmas as much as you can!
john85166 bert74483
Posted
You must have devised a few home remedies to cope with the side effects. Hope you have home support. If all this happened 5 yrs later we might have an artificial kidney
badger_47080 john85166
Posted
Sorry to hear the news..
My mom had a GFR of 7, she just past away three weeks ago at 83.
I do not know anything about in home dialysis but at the time we were thinking about it. She was in and out of hospitals with different dialysis nurses which was a problem. One dialysis nurse forgot to add potassium and my mom was low in potassium, this cause my mom's heart to stop. She was in ICU for a while because of this but survived. She had stage 5 renal failure for only 5 months. I heard that in home dialysis will get easy just make sure that you take the appropriate classes for it.
Sanitation is huge with dialysis, you can get an infection quickly if items are not sanitized.
Your diet is the most important thing right now. It is very important that you get your blood work checked often that way you can know what your potassium levels are and everything else that comes along with it. A lot can happen in months you have to make sure that you keep up with your blood work. Also if you find abnormal swelling get an x-ray or MRI done. Usually when an organ fails others fail also. A month before my mom passed we found that she had cirrhosis of the liver. I'm not trying to scare you I just want you to take precautions to catch anything that arises early. Good news is that if you don't have any other health problems attached to this, you can do this and make it but like I said diet is everything. Good luck and God bless you you will be in my prayers.
michael22502 badger_47080
Posted
john85166 badger_47080
Posted
I have blood tests every month now so their pretty much on to changes. I'm very conscious of what I eat. Such a pity there is no cure.