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Along the lines of excellent doctors who care about their patients, here is an entry from after my very first dialysis treatment (which was on a Saturday):
My nephrologist, Dr. H., called the dialysis unit to ask how I was doing, and to let me know he was thinking about me-what a guy!
I was also talking to the nurse from the Nephrology clinic today, and she said that Dr. H felt bad about having to start me on dialysis with how good I still look; it’s a much easier decision when the patient is symptomatic. It’s just that my labs got so much worse, that he couldn’t let it go any longer. I’m just looking at it as being a temporary situation, until a kidney comes along.
For those who weren't following my blog back then, I had an episode of extreme flank pain, which was most likely a ruptured cyst, followed by a presumed infection of a kidney cyst (they are very difficult to diagnose; my urine culture was negative, but I had a high fever and chills). My creatinine was around 7.7 and BUN ~90 prior to this, and they went up to ~12 and 118, hence the dialysis.I'm on dialysis now, waiting to talk to the surgeon. They are now retrieving the kidney, and I assume will bring it back to Geisinger via LifeFlight (helicopter).
I'm BELOW my "dry weight" by a half kilo due to not eating much. One of the dialysis nurses said that IV dye can cause diarrhea; maybe that's what happened.
Jackie is more nervous than me; I'm pretty calm...
No heparin today due to surgery; instead, I get boluses of saline every half hour so that the machine doesn't clot off. I'll post again when I know more.
Beginning wt: 93.0 kg
Cross posted at WordPress.
I don't think the vomiting the other night was from meds; I have a stomach virus which just happened to occur at the time of my fistulaplasty. I'd much rather have a cold than this, but sometimes, you just have no choice...
They took my suture out prior to when I stuck the needles in, and since I had the infiltrate on Tuesday, I put both needles in the bottom end of the fistula. I only gained 0.9 kg between treatments, since I'm hardly eating, and only sipping fluids.
I asked the Nephrologist about the stents and what would happen were I to develop Steal Syndrome. He told me that they would then be able to surgically revise my fistula. I don't want to take a chance of one of the aneurysms rupturing, so I'll go ahead with the plan; I think that's the best way to go.
Beginning wt: 94.4 kg. End wt: 92.8 kg.
Last night I was run down, and in be by 8:30, but I think a lot of that has to do with the virus. I ate a bowl of soup for dinner, and today I only had an orange, but don't really feel much like eating.
At work, we have a lot of patients calling in for notes from their doctor to either get out of work, get out of school (more so for the parents so that they don't get fined for illegal absences), etc. Some are legit, others are chronic. Dr. White Coat has a humorous story of a guy who was looking to get out of work because he can't sleep at night. I like Dr. W-C's style....
Cross posted at WordPress.My RLS (Restless Leg Syndrome) acted up at dialysis yesterday. I can tolerate it much better when it happens at night (because I have both the option of getting out of bed and doing something else, or taking my Tylenol #3, which usually helps alleviate the symptoms). When it happens at dialysis, it's very frustrating, because I'm chained to the chair, yet I can't get comfortable, and that's for 4 hours. Even though I have the laptop as a distraction, it's still annoying.
I also had an infiltrate of my venous needle. The site initially got hard, then felt like a spasm, and then began to hurt. The nurse was able to turn off the machine to prevent any further damage, and I ended my treatment 24 minutes early (I'm normally on for 4 hours). Despite that, I still hit my dry weight.
Beginning wt: 97 kg. End wt: 93.5 kg.
Last night I felt very washed out. I was dizzy, somewhat weak, had muscle cramps, and was very tired. I fell asleep at 8pm, and got up at 6. Today, I feel much better, although my hands are burny/tingly today. Not sure what to make of last night; does my dry weight need to be increased, or was my potassium too low? Something to continue to watch...
Today, I have my Intervenional Radiology appointment to "tune up" my fistula. I'm working today prior to the procedure, but will call first to see if they are running behind; I want to avoid the 5 hour wait I had the last time. If they are running behind, I won't have to waste sick time on just waiting.
Cross posted on WordPress.
Quiet day at dialysis. I didn't have much trouble sticking the needles, and there were very few alarms during the 4 hours. I spent most of the time surfing the internet and playing a game called Huntsville (very addicting).
One of the patients in my area is only there on Saturdays, and she loves to complain. She's in her 70's to 80's, and although quiet most of the "shift", towards the end, she complains about how much time there is until the end. There's other things I would rather do with my 4 hours on a Saturday afternoon, but if I don't do dialysis, I'll be popping up daisies, so I don't complain and don't let it bother me. Dialysis is better than the alternative....
Beginning wt: 96.5 kg. End wt: 93.1 kg.
I cross posted this on WordPress.
I found this cartoon about gas prices: 
I continue to “self-cannulate” at dialysis. The lower (arterial) needle is a piece of cake, but the upper (venous) needle is more challenging. As the one nurse said, since I’m doing it one handed, I can’t put traction on the skin, and my skin is thicker in the upper end of my fistula.
I go for another angioplasty/fistulaplasty on Wednesday. I can’t assess my fistula too well by touch, because I don’t have much sensation in my finger due to my CMT. Visually, the aneurysms don’t appear to have gotten that much larger. I’m just hoping that the radiologist is a little more liberal with pain meds the next time; the one I had the last 2 times did a good job with the procedure, but instead of being PROACTIVE with my pain, he was REACTIVE.
Beginning wt: 96.5 kg. End wt: 93.1 kg.
The dialysis unit I go to at Geisinger is having a picnic on Sunday to celebrate it’s anniversary. Hard to believe, but they have been doing dialysis since 1963, which also happens to be my birthyear!
Last night we went out to eat with friends, and when I got home I fell asleep. I had a major episode of restless legs, so I took 2 Tylenol #3’s, and slept like a baby all night. I got in almost 10 hours of sleep; I apparently needed it.
Cross-posted at WordPress.
Smooth treatment today. I didn’t have a huge weight gain, and my pressure was good (124/68 to start, 100/60 at the end).
I did have some blood spurting from both insertion sites, but I think that was due to me being too tentative with inserting the needles.
No transplant calls in the past 2 weeks. I’ve decided that I won’t get excited until the transplant is inside of me. In other words, I’ll believe it when I see it.
Beginning wt: 96.5 kg. End wt: 92.9 kg.
I did have labs today prior to dialysis. So far, they aren’t available online, but will be later tonight or tomorrow.
One of the biggest issues with being on dialysis is nutrition. Since I am limited as to what I can eat, I must choose carefully. The first priority is protein. So, I started eating protein bars. They do have increased phosphorous, but are very nutritious otherwise, so I just be sure to take a phosphorous binder when I eat one. At this point, I eat 1 bar daily. the South Beach Diet bars are high in protein (19 g), but have no taste. I prefer ZonePerfect. My favorite is the Chocolate Almond Raisin. Runner up is the Fudge Graham. I didn’t care for the Iced Cinnamon; those are the only 3 flavors I’ve tried. I got 2 dozen bars for under $19 at Sam’s Club, which is an excellent price.
Of course, the other advantage to maintaining protein levels is for healing after surgery. I did check with my Nutritionist, and she agrees that it’s OK for me to be eating these.
Cross posted at www.chronicpositivity.com.
I just got back from my first dialysis treatment. Other than some slight dizziness when I first stood up afterwards, everything went smoothly. My first treatment was only 2 hours, and the next one on Tuesday will be 3 hours. Ironically, the first thing I did when I left the dialysis unit was to head right for the Men’s room to pee! They did take off a pound of fluid today (which apparnently is not much; I think I read somewhere that the goal is 3% of your "dry" weight).
My nephrologist, Dr. H., called the dialysis unit to ask how I was doing, and to let me know he was thinking about me-what a guy!
I was also talking to the nurse from the Nephrology clinic today, and she said that Dr. H felt bad about having to start me on dialysis with how good I still look; it’s a much easier decision when the patient is symptomatic. It’s just that my labs got so much worse, that he couldn’t let it go any longer. I’m just looking at it as being a temporary situation, until a kidney comes along.
The last kidney cyst rupture/infection apparently did me in; I start dialysis tomorrow. I feel OK, but my labs have worsened over the past week.
I went in today for my iron infusion and had stat labs. When the labs came back, my Neph scheduled me for an appointment and went over my labs. Since my BUN is over 100 (it’s 118), he was very concerned, even though I still don’t look or act uremic. My phosphorous is high due to having to temporarily stop my phosphorous binder while on the antibiotic. I’m also having some urinary urgency, which could be from a kidney stone or dislodged clot from a cyst rupture, so he extended my Cipro to another 7 days (21 days total).
Unfortunately, the local clinic doesn’t have any openings, so I’ll have to start out dialysis in
Component | Your Value | Flag | |
ALBUMIN | 3.8 | 3.8-5.0 g/dL | |
CALCIUM | 8.4 | 8.3-10.5 mg/dL | |
CO2 | 16 | 22-32 mmol/L | L |
CHLORIDE | 100 | 98-111 mmol/L | |
CREATININE | 11.6 | 0.7-1.5 mg/dL | HH |
GLUCOSE | 84 | 70-120 mg/dL | |
PHOSPHOROUS | 8.9 | 2.5-4.8 mg/dL | H |
POTASSIUM | 3.7 | 3.5-5.1 mmol/L | |
SODIUM | 136 | 135-146 mmol/L | |
BUN | 118 | 6-20 mg/dL | HH |
GFR ESTIMATED | 5.1 | >60.0- mL/min | LL |
ANION GAP | 20 | 7-15 mEq/L | H |
Alberta, one of the 2 RN's in the clinic (and daughter of friends of ours), showed us around. There were still 2 people being dialyzed, so we were able to see how the machines are actually operated. There were 2 kinds of machines; an older, more manual machine, and a newer computerized model with a touch screen, that basically did all of the calculations. The machine runs at something like 380 ml per MINUTE (an adult getting IV fluids would probably be getting at a rate of 100-125 cc/HOUR); with such a high flow ratek, it's important to have a reliable access. She looked at my fistula, and said that it looks mature enough to use.
They have several TV's there (which doesn't much matter to me) as well as wireless internet access (cool; now all I need is a laptop). The chairs seem very comfortable (similar to the recliner chairs you sit in when they draw your blood). We were there for about 20 minutes, and Alberta answered a lot of our questions. As it turns out, she works at Geisinger sometimes, at the Select Care floor (chronic vent unit housed at GMC but run by another company). The dialysis machines today are MUCH different and smaller than the one I saw my mom hooked up to back in 1976...
As mentioned before, I got my hair cut after work. As a matter of fact, I got a "buzz cut". The reason: when I'm in the hospital after my transplant, I don't want to have to worry about how my hair looks. I HATE not taking a daily shower, and hate even more when I can't wash my hair. I'm sure that I won't be allowed in the shower for several days post-op. If my hair is short, maybe I won't mind it so much. Eddie, my barber, offered to cut my hair on short notice, if need be. Even though I'll have to get to the hospital within several hours, if it's almost time for my next haircut when I get the call, I may just take him up on that....
Jackie looked ALL OVER for one of those vibrating chair pads. Since this is a "seasonal" (Christmas) item, the stores were all sold out. She finally went to Eckerd in Berwick, and picked one up for 50 bucks; it was like a godsend. Not only does the vibration help the pain, but it is also heated, which feels good as well.
Sloan had her 2nd dialysis treatment last night, and it went a little better. They made some adjustments, and she felt better coming off last night than she did Wednesday, although today she was vomiting. Something to look forward to....
Procrit is a medication containing a hormone (erythropoietin) that stimulates red blood cell production. This hormone is produced by the kidney. Obviously, when the kidney's are overtaken by cysts, as in our cases, erythropoeitin production is drastically cut down and eventually non-existant.
Julie, the nurse in the Nephrology clinic, told Sloan that there are people in whom fistula's don't work, so they keep the Udall catheter as their permanent access (it's 2 rubber tubes coming out of the chest; the one port is to remove the blood before it goes through the dialysis machine, and the other port returns the dialyzed blood). She'll have her treatments M-W-F from 3pm-7pm.
