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 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.
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.
I have not updated my life on dialysis for the past two weeks. Please forgive me for not keeping up. I came up with an idea to make this dialysis update the one that covers the days I missed. The past two weeks of dialysis went smoothly, and I got out of the clinic by 1 PM each day. Today, I got out by 12:30 PM. My catheter has been holding up nicely at eleven months old. I find this fantastic because catheters wear out eventually. Clinics are beginning to reopen from the Coronavirus pandemic, so when time is set for me to have a mapping done for a fistula or graft, that appointment will be made. The team that works with me depends on who is in all three pods. All the techs and nurses are very good at what they do. The clinic has traveling techs (3), and the rest of the techs and nurses are permanent. Although we shouldn’t have favorites, I do have my favorites. I still have a fear of strangers until I get to know them as they come and go. CC, K, and A, from other states, love to continue their traveling and not stay in one spot too long like To, Tr, and T, and R for a year before leaving. I do not know if T will be back even though I have heard she does want to return after the threat of the Coronavirus has cooled down. The virus has yet to calm down in Rock County. I am still playing it safe even though I get looks from neighbors. Dialysis patients are having their temperatures checked before entering the clinic, and are to wear masks out in public until further notice.
The week before, my two-week hiatus of keeping up with my life on dialysis, I did have a week of dialysis that didn’t go smoothly. Cathflo had to be used because my catheter was NOT working correctly. During that week, I could tell that dialysis didn’t help me. The center has days where patients have issues with their treatment. Although dialysis treatment is best when using a fistula or graft, some patients like me, use a catheter for treatment. Fistulas and grafts are, sometimes, tricky, whereas the catheter can be more tricky. I am grateful that my catheter is working smoothly at this time, even with an occasional hiccup or two from time to time. The past two weeks have proven to be excellent dialysis days also though my blood pressure was low three different times during the past two weeks. What the techs and nurses do, when blood pressures read low, they put the machine on the minimum that allows your blood pressure to come back up as my blood continues to get cleaned of toxins, and the taking of fluid is at a standstill.
Today was a good, excellent dialysis day. What happened afterward is something I have to mention in my diary. I am glad that tomorrow is Sunday, and DKF is not here until Monday morning. I need a break from people. I am taking advantage of my day once Sunday arrives.
I was not happy how dialysis went yesterday. I believe the nurses and technicians working on my behalf did not like how dialysis went for me. Because I could not dialyze properly, I have had discomfort the rest of Tuesday and most of the day today. I had mentioned that I had a dizzy spell that lasted almost fifteen minutes, and I had two dizzy spells yesterday. I was alone from 1:45 PM to 7 AM until DKF arrived to take care of me until 10:30 AM. I had to do a lot for myself while feeling dialysis didn’t do its job the best I could.
Dialysis is back on track now. I saw Dr. A at the clinic this morning before being tethered to the machine/dialyzer. He did get my message on Friday regarding my dislike of how things were taken care of on Thursday. Yes, I was still feeling the pressure of everything that was going on at the clinic. Unprofessional at best given that half of the machines/dialyzers were not working. Today, I understand that it was right to have my catheter checked since it was not working for proper treatment. One of the nurses seemed to cop an attitude about how the IR doctor Dr. S. didn’t do specific tests to check if the catheter needed to be removed and have a new one put in, and she wanted a new one put in. I will be speaking to LV the nurse tomorrow about this one nurse’s attitude. I believe doctors know what they are doing. My catheter did not need was not needing any replacement at this time.
Now, please understand that I understand this one nurse’s feelings at this time. The catheter was giving us all trouble on Thursday, and it needed to have an inspection. I’ve had this catheter almost ten months now. The only part of the nurse I do not understand is the attitude she had towards the doctor who does the procedures/catheter placements. A nurse should never judge or question a doctor’s decision unless it puts the patient in a dangerous position of some sort or even death. I am not happy with this nurse’s attitude whatsoever. I believe nurses are to be professional at all times. Yes, an opinion can come about from time to time, giving the circumstances, and yes, we did have seven machines go down last week that brought out chaos and mayhem. Doctors, nurses, and technicians took the time to get all the devices a test to get them all up and running as smoothly as possible with the machines being problematic. When a machine goes down, they have to pull them out and look at them to see where the problem lies. Dr. A told me that there were bacteria in the machines, and they needed to dialysis team had to take time to service the devices to optimal use. The idea of bacteria in the dialyzers is frightening. As far as for a patient’s safety, I can see that it can be frustrating.
As far as dialysis went today, for me, it went well. I am back in chair number four. I was able to dialyze without a hitch at 3.5 kilos. Because I couldn’t dialyze properly last week, I reached 94.6. That is the highest coming-in weight I haven’t seen in a year! I will get back to 88.5 kg soon. Dr. A believes it will be by Saturday. I feel different about it.
I had gotten a call from our dietitian at the dialysis center. She is such a sweetheart. She wanted me to know that we are resuming our regular schedule. I will be there at 8:30 -8:45 AM to be tethered to the machine/dialyzer by 9:15 AM. Also, I was reminded to go to door #4 instead of door #1 we have been instructed to do so for the past three weeks. The lung/sleep center is reopening their doors to patients now that they have the go ahead from governing officials involved with the Coronavirus pandemic. It has been a trying time for many businesses and people. Knowing that there is a coming to an end to the pandemic in the future, I as a human being with a higer risk of getting sick, I am still going to take things very seriously from this day forward — ecomonically as well. It can be a scary world beyond the safety of the home that’s for sure.