First time on dialysis

[Bassetmommer]

I should have posted this here. I did originally posted it in the site for dialysis. But if you are looking toward dialysis, you would be on this site first. So, this is my journal though my first time on dialysis. You can see the replies if you can get on the HealthUnlocked for Kidney Dialysis. I know I wanted to know as much as I could about the different dialysis available. RonZone has published a lot on PD. Look for his posts if you want to learn about peritoneal dialysis.

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.

[Marvin8]

My gosh, you are one brave soul. I, on the other hand, am still petrified at the prospect of this. I'll be interested to continue reading about your journey. Thanks, and God bless.

[ChevyHappy]

You have helped so many people. Thank you for this description. My best wishes for you as you continue. Please take care of yourself.

[CuriousCKD]

I am happy to hear from you, as I have been wondering how you’re doing. I can’t blame you for having a pre-disposed attitude, as you have been through a lot already to get to this point. I hope you will adjust to this new routine quickly, and that it will help you in your ongoing daily one. I am cheering for you! I hope to see good reports in future. God bless you real good in this journey!

[Dana66CKD]

Hoping for you to stay strong. We are with you, though your journey is tough, we are here listening and praying that life treats you well while you undergo this new way of life.I was too sick to be terrified of the experience oh so many years ago, but the nurses who ran the unit in the hospital, were top notch and well versed in the process. I was blessed and given a second chance to live, see my grandchild become an adult and have my great-grandchildren. I thank my family, friends and our community for all their prayers to spare my life.

Hope you can adjust and have good experiences in the years to come.

Bless you madame...🙏😊

[Pontios]

You are indeed brave. Very insightful comment from yourself as usual. Thank you for such a detailed description. I always look forward to reading your posts but not really this one as I am sorry for you that you have had to start dialysis.

[OldTownhammock]

Thank you for sharing. Fight the good fight. BTW, what is pth?

[nonna70 in reply to OldTownhammock]

I too appreciate your willingness to share your journey with us. God bless you and your hubby.

[PeaB4YouGo in reply to OldTownhammock]

PTH describes the test for Parathyroidism.

[OldTownhammock in reply to PeaB4YouGo]

Thankyou.

[BurnedOut30]

My husband started PD in late May, and while it seemed overwhelming at first, he is doing marvelously well with it now - like a champ! He feels so much better and is now able to eat foods that he loved, but was forbidden before dialysis. His color is back to normal and he has been taken off some of his meds. Highly recommend PD over hemo for patients who can manage it! Best of luck with your journey.

[Bassetmommer NKF Ambassador in reply to BurnedOut30]

Good for your husband. It is a journey and not an easy one. Glad he is doing well.

[6V53]

Thank you for this post. I'm hoping I don't need this anytime soon, but I have never heard a first person description before. This answered a lot of the questions I had about the process that nurses and Dr's don't really know how to explain.

I appreciate your description of preparing your home. Before my transplant, we thought dialysis was imminent. So, I remodeled my house. I paid a contractor to split our one large bathroom into two small bathrooms. This allowed us to have a master bath in our bedroom. I had heard that a drain was needed and I didn't want tubes across the hall to be a trip hazard.

Thank you

[Bassetmommer NKF Ambassador in reply to 6V53]

Glad my post answered questions. I know when I was preparing, I could not find a really good description, that was honest about the processes I was facing. Look for Ronzone's posts on his experience with PD.

[HSV21 in reply to Bassetmommer]

Hello Bassetmommer,

Thank you so much for all you do for us in sharing your journey. This is exactly the kind of information we need to be able to prepare. I had my first education class for transplant last week, and working toward my first evaluation. I think about you alot and it gives me comfort knowing what you go through. All my prayers and wishes for a great outcome for you and a fast transplant.

[Bassetmommer NKF Ambassador in reply to HSV21]

Thank you, you are so kind. Be patient with the evaluation process. There is a lot to it. I love the idea you had a class to go to. I wish we had something like that. I just was passed around from Dr to Intern to med tech without any cohesion. I will write more about my journey but I am too tired right not.

[Bet117 NKF Ambassador]

Bassetmommer,

Just wanted to let you know that I'm thinking of you and will remember you daily in my prayers. You are a very bright, intuitive and courageous woman.

As you embark on this journey; remember that there will be good days and more challenging ones.

Put yourself first!

Know that your story will inspire and give courage to others and you are never alone.

Bet🤗

[Bassetmommer NKF Ambassador in reply to Bet117]

Thank you. You never know what the impact of dialysis until you do it. Today I feel great. I insisted that they take no fluids in my treatment yesterday and it worked. NO cramps and I slept the best I have in a while. I gave my poor nurse quite a lecture on individualizing patient care to the patient and not to the statics or other stupid predetermined outcomes.

[Hidden in reply to Bassetmommer]

It's funny to hear you talk about giving the nurse a lecture because I did the same thing when I was on PD. I was really into keeping track of my numbers and I knew exactly how my body and the process was working. It got to a point where I knew it was time for my prescription to change because my kidneys had started filtering a lot more than the dialysate. I called the center and talked to the one nurse who thought she was in charge and she told me what she thought I should be on and I argued with her that it needed to be a lot less than what she thought. Turns out the doctor agreed with me and that created a wall between us after that. I went back to the center several times after I got off dialysis to say hi to everyone but she was not happy with me. There are some people who don't understand any of this and don't try to keep track of what's going on and just do what the doctor says. And then there are people like us who learn how things work and challenge the system if we feel there's a need. Happy self advocating!

[Bassetmommer NKF Ambassador in reply to Hidden]

Well done. Unfortunately, the system is set up to meet parameters. There is very little wiggle room as any deviations can impact reimbursement. The center has CMS dictated numbers to meet and when you have a patient who does not fit in the criteria, it causes chaos. It the system that needs to change. How and why did you get off dialysis? Transplant?

[Hidden in reply to Bassetmommer]

I thought I had discussed this with you before but Ill give you the short of it. If you remember, I had the GPA disease which is Vasculitis. That caused blockage of the very fine blood vessels in the nephrons and my GFR dropped tp 6. While battling the GPA, I took a LOT of Ibuprofen and we know that affects kidneys but kidneys can recover from damage caused by that. So I think the dialysis was needed until the affect of the Ibuprofen wore off and now I'm left with just the damage from the Vasculitis which is a GFR of 30ish.

[Bassetmommer NKF Ambassador in reply to Hidden]

You did I am sorry..... I should have looked back.

[horsie63 in reply to Hidden]

LOL I do the exact same thing. I go to in center hemo until I can regain the weight I lost in the hospital and I have them turn the machine so I can see the screen. I ask questions on all I see on there. I track my BP. I found a website that describes all the parts to the machine. No one else there does that. I've not found a nurse that won't answer my questions so I guess I lucked out.

[Bet117 NKF Ambassador in reply to Bassetmommer]

No thanks ever needed! Friends are there on the sunny and rainy days, holding the umbrella. As much as I haven't walked in your shoes, I'm sure the whole process, forget the idea of it, is frightening as well as challenging.

Cut yourself some slack as it's acclimating to a whole new way of life, diet and many other factors.

.. and don't look back on your interaction with the nurse or any other staff.

Treating the individual case; who and what is right in front of you is so vital in many professions today, especially the medical profession; this is your body, comfort level and life. You have the right to ask, questions and work as a team. I wish that all people generated empathy when dealing with diverse situations as well as personalities who are on a journey.

I'm delighted to hear that you are feeling better today. Remember that this is all new, a process and that you are not alone.

Please continue to reach out and let us know how you are doing.

Always here for you.

B...