I have not posted in a while. I am still going to the center for my treatments and training. The training has been thorough on their behalf. I am cannot express how hard this has been for me. I have tried to learn as much as I can and now can get the machine prepped for dialysis and we, my husband and I, can take me off and close out the process successfully. All good stuff. Still cannot cannulate myself and today they are going to go with a larger needle, so that's frightening.
BUT HOW DO YOU DEAL WITH IT ALL? I am so overwhelmed and depressed. Something I never would have thought would happen. I am angry as hell about the whole thing and have not been pleasant at times. They think I should be happy, happy and thrilled about the whole process and I am not. NOT at all. I received lectures from my doctor and the head nurse, which did not help. There has been no mental support or counseling. The Social Worker was in once early on and was not helpful in any manner. I am starting to have nightmares. I often cry at night. I am so sad.
The other day I put the system together not realizing that one of the connections had fallen off. And I started up the machine and it began to dump saline all over the floor. I had no idea because it had never happened before, and I had NO idea what was wrong. I just burst out in tears. AND that seemed to piss people off, which made me more upset.
I was just on a patient, CMS focus group. All the patients were either on dialysis or had been. The horror stories of how things are in center is disgusting. But everyone expressed concerns about the mental issues that are not dealt with in dialysis, no matter what modality.
I need advice. How do I get past all this sadness and anger?
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Bassetmommer
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Are you seeing someone outside of the useless social worker? If I were in your shoes (god forbid) that's what I would do. I've found the social worker, dietician, my nephroligist to be worthless. Luckily his partner is much better and one of the others who comes around actually listens.
But despite the failure of the PD and what a nightmare that was, the 2 months in the hospital...I've been fortunate. My dialysis center is a small independent one and the care there is good from the nurses. If I want to speak to the manager that's easily set up, the nurses answer my questions and when I say don't take off fluid as I'm trying to gain weight and I have no extra, they actually don't take off any. I get cold despite my heated chair and blanket so I have them turn the temp up on the machine. I also have them turn it so I can keep an eye on my BP and the other things.
I truly feel for you and how awful things seem. I know you didn't want to do dialysis and PD is not an option but is it possible your attitude (truly dislike the idea) is coloring your perception?
I can't tell you how to feel better, ranting here helps some people. That's why I suggest an outside counselor even though they have no clue as to what dialysis is like, maybe having someone listen to your concerns outside the system will help.
I'm going to hold you in my prayers and thoughts and truly hope things get better.
Hey, you are doing exactly what you need to do, talking about it. Holding this kind of stuff inside does NOT help. You shouldn't put off expressing your feelings, so even if it's in the middle of the night, get on here and let er fly! All of us have felt what you are feeling, but with the complications of home hemo, you are feeling it more just because of the incredibly technical process you are having to master. Doing PD is like getting a pilots license for a Piper Cub when you master that, doing home HEMO is like getting a pilots license for a 747 it seems with all that you have to learn an remember and understand and DO. Be kind to yourself, this is going to take a while, but once you have it down, it'll be like riding a bike after that, or flying a plane. Don't let anyone make you feel that this should be easy. It's not. And if you want to have a good cry about it, that's absolutely fine. But don't wait to let us know when you're having issues like this. Let it out early. You have been a bastion of assistance and unstanding to others and I know you feel like you should be stronger just because of your need to be strong for others. But it's absolutely ok to be show vulnerability to all of this. My experience has been very humbling at time, and I have learned from that to appreciate and respect the process that I've gone through to get to a year out on PD. So give yourself some time an empathy and just keep plodding along. There will come a day when you can say "I'm there". We're here for you until that day comes. Reach out often.
Oh and just so you know, I've had my share of "goof ups" this past year, thankfully none led to an infection (yet). And I got hold of one box of cassettes where the machine would wait till I was in the "priming stage" just before I connect up for the night to tell me that the cassette was bad. This happened to 5 cassettes from that one box. After I used up all the cassettes and was on another completely different box, I got a recall letter from Baxter on that box of cassettes. They were a tad late on that recall. So does crap happen, ohhhh yeahhhhh. But, a few choice church words later, you get through it and get on here and complain about it!
Really sorry to hear that. You have been a great source of advice to others. From all your previous posts you are obviously very intelligent and anyone can make a mistake so not great of those in the centre not to show more understanding. I like the fact that RonZone and Horsie63 say to get it out here. I hope thing get better for you.
I'm so sorry you are going through this. I've heard that learning to deal with a chronic condition and all that goes with it is like dealing with grief. I think, having CKD and having to do dialysis is probably one of the worst things we might have to deal with. I really don't have anything more to offer but agree with the others that said maybe seeing an outside counselor? Also, let it out, let us help.
IThe truth is...we are all pissed that our kidneys have failed and that we have to do Dialysis...We want to do other stuff...And the fact that we will be our own Nurse and the Patient at the same time can be stressful...So much to learn and be careful of....plus dealing with Our Grief we go through...but we have to remember those who walked in these shoes before us...they made it...they adjusted...they survived....and so will we.
Its not fair...nothing about Kidney Failure is fair...We must just be Heros for each other and for ourselves...Its okay to be pissed and feel inadequate and Depressed ....
Its Kidney Disease...and here we are Rocking It !!
I survived and sometimes thrived on hemodialysis in center because I had a readily available support system of nurses, techs, unit assistants, nephrologists, NPs, dietitian and social worker right there when I needed help or answers. I really admire you and your husband for taking on home hemodialysis - I would never have done that (I was too afraid of needles to look when they were inserted!). I, too went through a lot of stress every time a "first" thing happened - there were plenty of times I got upset, cried, panicked. It's better to let it out in a safe place than try to tough it out by yourself. By practice I finally got used to things and could even laugh and joke about them. You will gradually get to that acceptance phase, but may experience a whole range of emotions in the process of getting there. Be good to yourself. Take care!
You come across as such a strong, competent. Independent person who has no problem asserting yourself and especially in getting things done and done right. So, meeting your waterloo has to be devastating especially since you're not used to not getting things done right, But you have to stop being anger at yourself. You're not failing. You just hit a bump in the road. You know what. You're going to get this procedure down pat sooner than you think. Ask for more help and get more experience until you're a lot more comfortable with the process and a lot more comfortable being dependent on others for awhile. It's not easy I know. It's the new normal. Sending virtual hugs and many prayers that adjustments happen soon.
I am so sorry to hear how hard you are finding the whole proces.I think you are very brave to consider doing dialysis at home; there is no way I could hope to cope with doing that. Having seen the problems the nurses encounter, both with needling me ( they, on one occasion used 5 needles too "get it right" - and they have been
working here for years.
On a couple of occasions, the nurses have forgotten to cap the tubing, and I have lost some blood. On other occasions, there has been saline all over the floor. This is from experienced people who put three sets of patients on, three times a day, 6 days week!
There is no way you should beat yourself up if you make a mistake through inexperience; we have nurses who have been training for months, who still are unsure and not at all confident. Even the very experienced ones sometimes have had to problem solve hiccups in the procedure.
And you expect to " get it right"? Your expectations of yourself are (understandably) far too high. I know that, because I am the same.
I have suffered badly from depression for most of my life, and going onto dialysis was frankly something I never thought I could cope with; there are times when I don't cope half as well as I should. I wonder what I would do if it wasn't for my wife, and our two sons and their families; I often think I would be very tempted just to give up. I can't though, because they are there, and they apparently want me to be around ( difficult for me to understand, with my low opinion of myself).
I have had all types of therapy, over the years. None has " worked", some have helped in the short term. Medication has never worked ( for me). The last Councelor I saw ( when I started dialysis) told me I needed antidepressants, but I didn't take her advice.
One of the best things to come out of therapy, as far as I am concerned, is the realisation of the need to be kind and understanding to myself; to realise that I am not superhuman, and to expect far less from myself.
You might find group therapy helpful - I think you might find that there are plenty around who feel as you do, and who suffer just as much. We often don't show it, because we tend to have this façade of a "brave face" most of the time.
I hope that there are a few things in this long ramble that might make you feel better about yourself.
All those around you have no idea and have never walked your walk. I hate this for you. Every time you start to feel this way stop and pray. Pray in front of them. Show them God has this not any human. Let him take all of this. He will… I promise. He is what got me through and keeps me going everyday. I think about how he got me this far and will never leave me alone.
When it comes down to brass tacks. God our savior is the only one that never leaves us. This life is short compared to eternity that begins when this time is up.
Try to smile at memories you make daily. Journal only positives of the day even if it is I woke up today with a date. Make a gift box to put your memories inside to read them later especially in the tough days.
May God Bless & Keep you may he never take his hands off of you. 🙏🏻♥️ You are loved and cared for is the message God sends you!
THANK YOU EVERYONE FOR YOUR REPLIES. You have no idea how much they helped me. I think in this journey, I hit a point of frustration that I did not know how to handle. Yesterday, I decided to have the charge nurse, they one who gave me a lecture about my attitude, and my med tech sit and just listen to what I had to say. I think it was beneficial for all. My husband and I had a long talk at home first and so he was totally on page one with me.
The major issue was that NO one did any training or guidance before I got on the machine. I walked in on day one, saw the machine for the first time and was connected immediately. It was overwhelming and awful. Then the next weeks, they expected me to start learning the process. Then they infiltrated the fistula, which in all my years of pain, this was one of the top injuries. But they continued on with the placing, no matter how much it was hurting. AND then on top of it, it seems they never have had a female who can only go 2 hours without having to pee. They cannot take you off the machine, so I only do 2 hours on, which actually is 2.5 because of the time to get off the machine. This is a big issue for them. And then, there were some weeks of total agony with inner thigh cramps that I cannot express how painful those were. They have stopped.
With all that going on, it was like everything was bouncing off my face instead of going in my brain. Finally, it seems that I am getting things down. But as I explained to them, this was not a good approach for me. Turns out, somehow, I was not given the opportunity to come in and see everything before I started and that is their normal procedure. I never had the welcome call. Never got their class they usually do. I never got a chance to see one of their incenters either, which could have been done. Somehow, I fell through the cracks. I think it won't happen again.
Also, most of their clients, bar a few totally independent users, have someone who is healthy doing their set up and stuff. I did not want my husband to have to do so much and I told them when I started, I wanted to be independent. They felt that my husband should learn how to do stuff. He surprised me completely with stepping up and actually doing a great job. Total reversal of our roles in our marriage for 17 years.
After talking with them, I said the biggest issue missing is other patient contact and support. They did have one lady contact me. She was very nice. However, her husband does everything. She sits in the chair. He does all the connecting, all the maintenance, all the inventory and all the other "things" you do not find out about until really down the path. It is a full time job. My husband and I had NO idea what was involved and it would have been nice to have that opportunity to truly see what was involved before the first poke.
We start next week in our home. They keep saying you are never alone and there is always people to call and get support. I guess I will have to just experience this to stop worrying about it all. There are a ton of things, in the maintenance area we do not know. And yesterday, we had to learn about giving me iron through the machine. It seems there is always something else added to the list of things to do.
The good news is that after me talking for about 1/2 hour, they seemed to understand a bit more about me as a person. It was decided that a patient group would be formed, and it would be my project after I am a bit more settled. I told them that this was exactly what I need to be able to move forward and get out of my pity party. So, I am feeling much more like my old warrior self.
Thank you again for listening and supporting. I will soon write another part to my story of this part of the journey for those who want to consider home hemo. I still believe it was the right choice.
I did that, too! My social worker and I started a patient support group where we met with patients in between shifts in the lobby. ( this was before the pandemic, then we tried various ways to meet online or by conference call, but nothing really worked out) I also became a Patient Ambassador at my dialysis center and a member of the QAPI committee. Basically that developed out of meeting fellow patients as we were coming to our dialysis sessions. Quite a few of us became friendly and would joke around and share our days. Admittedly, this is easier if you're in center. I still volunteer even though now I have a kidney transplant (3 years now!). You can do more than you think!
It is really hard to cannulate yourself. It took me weeks to be able to actually push it in my graft. Don't let anyone get in your head, you need to do it when YOU are ready, not them. I found a hefty layer of Lidocaide/prilocaine cream numbs you up enough there's no pain. Once you do it you'll see it wasn't as bad as you thought it would be. I promise.
Here's what I did. Picked a day to do it. I tried not to over think it before I arrived, I didn't beat around the bush once I was set up...I took a deep breath and pushed it in.
You will be so relieved and proud of yourself once you do it, you will feel like super woman. You got this, don't give up!! We are all pulling for you!
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