I have been waiting for over a year to get access (fistula or graft) that can be useable so I can get rid of the catheter. After three to four weeks since my graft placement, the clinic will begin using my graft today along with my catheter. The clinic has protocols and procedures they follow to get the job done correctly. I do not understand, but I see what it is all about. I do not find going to dialysis a waste of my time when it comes to saving my life. I am not ready for another transplant, and I am unsure if I want to have another transplant now. The idea of finding another almost perfect kidney like my mother again scares me — it won’t happen.
Tuesday and Thursday
Life on dialysis is going smoothly. I have on Tuesday and Thursday, sat in chair #1 and chair #2. It was a nice change, but the reason I was not in chair #4 was that the dialyzer/machine was in needed repairs for some reason or another. Being placed in two different places had moved another patient into another pod for a couple of days. My favorite chair is #4 because I can see from the chair to the other end of the room. I should be back in chair #4 for Saturday treatment. I have to wait and see. I feel I am living a normal life with having dialysis three times a week at three hours and fifteen minutes long. With the Coronavirus still running about, I cannot do much even though I am now allowing my boyfriend and his mom to come over Saturday (Sabbath) afternoon to have worship with them. That is not a risk because they wear a mask while visiting me.
Week of August 9 – 15, 2020
Today was not too bad. The technicians and nurses took good care of me. Dialysis went smoothly. I feel tired and out of sorts this afternoon after dialysis because the amount of fluid they have taken out of me has lowered my blood pressure below 100/75. The machine had to be changed to cleaning the blood and not taking more fluid out of me because I got dizzy and cramped in my leg and arms.
Blood pressure was low again. The machine reprogrammed to clean blood only.
Dialysis did go smoothly. Dizziness occurred again, and movement to my ride home was slower than usual. Breathing is difficult while wearing my mask, but I am still moving.
I believe today is the first day in a long time I have felt that.
My hope that dialysis would be better than Thursday was dashed, and I still had issues with my blood pressure going below 100/75 during treatment. I will talk to Dr. A about readjusting my fluid output. I was more weak than usual. It has been a year since I have had to use a wheelchair to exit the building and ride home. Yes, I had to have a wheelchair today. My breathing with my mask on was difficult. My legs didn’t want to move my way; they wanted to go their way, making my breathing difficult. Something about my treatment has to be changed next week.
Week of August 16 – 22, 2020
Every Monday and Tuesday, unless it is a month with five Mondays and Tuesdays, Dr. A and Dr. S come to the clinic on rounds with patients to discuss their plans for each one. The only thing about privacy is that there isn’t any at the clinic. Dr. A and I did speak about my blood pressure, the amount of fluid removed from my body during treatment, and my phosphorus level still being high, and what we are going to do about it. Dr. A changed my goal weight to 91 kgs, readjusted the calcium acetate medication that controls my phosphorous level, and went smoothly. I had 2.8 kilos of fluid taken out. What I experienced Saturday will not be experienced again for a long time. I was able to leave the clinic slowly but able to walk out with my walker. I am tired, and the weather is warm, but I am managing. Today DKF and I have errands to run, and I am going to walk more than I have in a long time. I have to do this. It has to be done. I can do this!!
Another good day for dialysis. I got in and out in record time. The new goal weight has helped me feel stronger and having less weakness and tiredness.
A very good dialysis day and the weekend has arrived. I got in, and out while DKF is in the hospital taking care of her health, her husband SF took me to dialysis and picked me up today. I feel a little flustered about some other things that do not have anything to do with dialysis. My flustered state did not affect my catheter today, but it will affect my catheter if I do not get it out of my system. I think it will be okay.
Dialysis didn’t cause any problems during treatment even though the machine alarm kept going off every few minutes. My catheter was being a little finicky, but I got through therapy at 12:30 PM. A nurse put Cathflo in my catheter after treatment to break up the clotting (if any) to allow treatment to be successful. I had to recline, sit still, and be quiet.
Dialysis went smoothly, and I got hooked up before 9 AM and out the door shortly after 12 PM. On a rare occasion, I get hooked up before 9:15 AM. The center seemed abuzz of patients, technicians, and nurses today.
There is always something happening in the three pods, but today the day seemed smooth sailing for everyone.
I found Thursday to be a good day.
Now I need to do better with my fluid intake. I have been three to five kilos over my goal weight this week. That is a little disappointing, but I know I can do it. I have to do better. Yes, the summer months are warmer, and I get thirsty for more water. I can do this.
Today was a perfect dialysis day for me. I am still four kilos over my goal weight.
Yes, I am disappointed. With this being my last treatment for the week, I am determined to drink the allowed fluid of thirty-four ounces. I have to be very serious from this day forward. Maybe Gatorade will help me.
There is a technician I like. She is such a sweetheart. She is twenty-two years old, and she had trained for three months before she got the go-ahead to work with patients. She does a fantastic job. I do not mind being her guinea pig, LOL
Dialysis started roughly when the nurse had to put in Cathflo to get rid of the clot in my catheter. I didn’t begin dialyzing until 10 AM, but I still left at 1 PM. With Cathflo administered, it took care of the clotting, and the dialysis went well for the three hours I had dialyzed.
We had no problems today. I have been working very hard at taking in my fluid amount of thirty-four ounces a day, and it is more difficult when the weather is hot, muggy, and over eighty-eight degrees. I have managed the best I can, and I have had 2.7 kilos taken out today. I did not make it to 3.2 kilos as planned because I was beginning to feel cramped and dizzy. We will have to wait and see what Saturday brings.
The final treatment of the week is always Saturday. I was able to get through treatment without alarms. My lines were reversed but got through dialysis. While at dialysis, I attended church on Zoom with Pastor S and other church members. It was a good day.
I have a dialysis update for the week of July 13 – July 18, 2020. I was planning on posting an entry earlier while at dialysis, but the internet was down at the clinic today, Saturday. I couldn’t even get online to have Sabbath school and worship. Dialysis went smoothly all week long. I am glad to be home relaxing, listening to Kids Praise Too! on 3ABN. I missed the first half of New Perceptions on 3ABN but got the topic’s gist when I got home. Despite not being able to be online while at dialysis can be a downer, but I do what I can.
Today I was not in chair four. I was in chair two while JA was in chair one. E (male) was in chair four, and E (female) was in chair three. It was a nice change for treatment. Treatment today went smoothly, but before it went smoothly, we ran in a couple of snags with the machine reacting to my catheter. I don’t think it was my catheter or me. The nurse T (female) was having difficulty with my computer/machine and vowed not to touch it again during my treatment. I did not find that amusing. With treatment going smoothly today, I can now express how the procedure/treatment went on Tuesday and Thursday. Please forgive me for talking about today first. It was fresh on my mind, and I have time to explain.
Lately, my blood pressure has been going below 100/60. Today my BP went to 96/45. I get the feeling of being taken into another dimension. I was feeling like I was riding the waves of an ocean or sea. Technicians attended to my needs to get some fluid back into my system to put the BP above 100/60 again. I was then unhooked from the machine, got a weight before walking out of the clinic door, and left for the day.
I am glad to be halfway through my weekly treatment at the dialysis center. My BP didn’t cause much of a problem today. My BP went low once, and they had to take care of low blood pressure again as they did on Tuesday. I plan to see Saturday be better.
For today, Saturday, July 11, 2020, dialysis came and went like clockwork. We had a couple of bumps in the road today, but dialysis worked for the most part. Out 3.2 kg of fluid being taken 3.14 kg of fluid out of me. When the machine alarmed one time, it took a technician to restart the device again to dialyze me after five minutes. Unacceptable! I talked to LV, the nurse, about it. I witnessed technicians around one patient when one of them could have come over to my machine to restart. LV, the nurse agreed with me that waiting five minutes is not acceptable, and it will not happen again. Technicians should pay attention to their patients in their pod. I was not a happy patient. The five minutes cost my fluid outtake, which was turned out to be .06 kg short. Lisa said she would make that point clear to the technicians at a meeting.
I do have to admit that I am glad to have my weekend now. I don’t have treatment again until Tuesday. Now that summer is here and the weather will get hot, keeping my fluid intake at thirty-four ounces a day will be a little difficult. Anything over thirty-four ounces will be fluid intension in my body.
I am so looking forward to my dialysis weekend. It has been one of those weeks where dialysis went smoothly on Tuesday and Thursday. I am hoping it goes smoothly today as well. Dialysis ran Tuesday and Thursday perfectly. The lines were NOT reversed. Because Saturday, July 4, 2020, dialysis was not working at all, I had to go to dialysis on Monday, July 6, 2020, for my three hours and fifteen-minute treatment, and Dr. A wanted me to come in on Tuesday for two hours and forty-five minute of therapy to keep me on track. This week I had four treatments. It was worth it, and today, I am going during my regular treatment time, and it is for the best. I did have a lot of fluid in me this week because I missed a day of treatment last Saturday.
I have learned to relax and allow the catheter to do its job this week. I hope it does the same today. I will update Saturday later in the day when I get home to rest a bit.
I admit that I have not been keeping up with my dialysis updates like I first started. Why not wait until the week of treatment is over to give an update. I haven’t failed to talk about last week; I didn’t do it yet. Why not right now? Last week June 23, 25, and 27 went smoothly. Tuesday, June 30, dialysis was a little rough in starting. I had to have Cathflo put in for forty-five minutes before being hooked up to the dialyzer. Thursday, July 2, dialysis went very smoothly without a hitch. I am hoping Saturday goes well.
Like I said before, I have decided to write my dialysis updates at the end of my weekly treatment sessions. In the meantime, please be patient with me. Today I have learned that taking 3.5 kg of fluid may not be feasible any longer. Today, I got dizzy when my blood pressure went below 100/60 for a little while — the last ten minutes of treatment (removal) at 3.2 kg of toxins and fluid. I got home safely with DKF’s help before she left for the weekend. Now I can concentrate on recuperating, Bible study, and decide on what I am going to do for the rest of my weekend. Dialysis did go well all week. The only thing that happened twice this week is my blood pressure went low enough that I had gotten dizzy two different days — Thursdsy and Saturday — today.