Access

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.

Dialysis Update (Two Weeks)

Week of August 9 – 15, 2020

Tuesday

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.

Thursday

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.

Saturday

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

Tuesday

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!!

Thursday

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.

Saturday

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 Update For the Week of July 26 – August 1, 2020

Tuesday

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.

Thursday

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.

Saturday

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

Weekly Update

Saturday

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.

Tuesday

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.

Thursday

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.

Saturday Dialysis Day

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.

Week of June 23 – 27, 2020

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.

My Saturday at Dialysis

I I have come to share how dialysis is going. I’ve also changed when I share because not always am I able to get online after treatment. Why not share about my week of dialysis on Saturday instead of every Tuesday, Thursday, and Saturday? It seems more logical to me. I have twenty-three minutes left to dialyze today, and it’s going smoothly today. My BP is low at 102/50 at the moment. Have to keep an eye on it. As for dialysis all week, it has gone smoothly. My BP was low on Thursday, so they could only take out 2.6 kilograms of fluid. When I get dizzy, they will always put me on minimum — clean my blood only. I am at a minimum right now at 12:36 PM. More details later.

Two Weeks of Dialysis Treatment and Thoughts

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.

Not Good Today

Dialysis did not go well today. The machine had an error message that would not go away with the steps the techs and nurses were following. I was able to get 1.1 kg of fluid out of me before being untethered from the machine and home. I can feel the effects of not having dialysis not go very well. Since I have been home after 1 PM, I have had a dizzy spell for getting up too fast that lasted for more than ten minutes. I had to back up to my corner chair slowly to sit back down after taking three steps in my living room.

Sometimes Constructive Criticism is Necessary

I did speak to LV the nurse about SAM’s attitude this morning.  LV promised me she would talk to SAM discreetly when the time was right.  A nurse should act professionally at all times despite the chaos of what is happening around her or him.  On Tuesday, SAM’s attitude about a doctor’s handling my case with the catheter was not appropriate.  Her tone was snotty.   I understand that she was looking out for me and wanting me to be able to dialyze without any hitches, but catheters are finicky pieces of plastic tubing sometimes.  Talking about how a doctor handles a patient’s need can get a nurse in serious trouble if they are not careful.  Today was an excellent dialysis day.  My dialyzer did not have any warnings.  It stopped once because I had moved to lay back to rest my eyes.  The catheter was being finicky about me lying down.  In other words, the catheter was being finicky about my position.