My PD Adventure

Last updated: Mar 17, 2001

http://gil1.home.pipeline.com/esrd

Dec-1999.
After 15 years on hemo, and after hearing from real people on PD, I decided to check out this kind of treatment.
I asked other PD patients on the Net, and they all were very happy with their treatment.
The dietitian gave me a handbook on PD. Looks simple and easy.
My doc made an appointment for me with the PD surgeon.

Dec-22-1999. I have a consultation with Dr. Strand at Henry Ford Hospital, Detroit, Michigan.
I am sure that when he sees my stomach with 12 surgeries he will start laughing and send me home.
First, he is not laughing.
Second, he thinks it could work.
Third, I don't have an appointment yet but it can be done in a couple of weeks.
He'll have to look inside, and if it looks good he will proceed with the catheter.

Dec-28-1999
I go for PD. I'll have a surgery on Thursday Jan-06-2000, at noon, if the world still exists with the Y2K bug.
The doc said that I'd have to wait 2 more months before using it, and then, hopefully, it will work for me.

Thu, Jan-06-2000, 11:40 am
We are at the hospital on time. Waiting.
At 12:00 pm I am in. Gown, bed, nurse, questions, forms, IV.
The anesthetic man comes. He is a student. I warn him that the breathing tube in my throat is my nightmare.
1pm, 2pm, I am waiting.
The surgeon comes. You'll have to wait a little more. The previous patient hasn't woken up. Very heartening.
3:00pm. I am taken to the OR. I am anesthetized. One hour. I open my eyes. As far as I remember, in most of my operations the respirator tube was removed before I woke up.
This time it is in. The anesthetic man tells me to take a deep breath before he removes the tube. Trouble is, I return to my senses quite fast and I try to puke the tube and with that I scratch my throat, and it is sore for a week.
In the process they fill the abdominal cavity once.
I ask what holds the catheter in place; they tell me that the inner end is like Velcro and the tissues will grow into it.
I suffer very little pain because of all my previous surgeries. Advil is enough relief before bed.

6:00 pm. Email:
Hi to all my friends. I am back home, the catheter is in, my throat is worse than my stomach because of the stupid respirator tube. Thanks for your prayers and care.

Sun, Jan-9-2000 Email:
I am healing slowly, I have already forgotten what surgery is before having this one. But I can walk and sit at the computer, which was a little difficult on the first couple of days.
A month ago I rejected the idea of a tube in my stomach, but I was convinced that the treatment is better and the food and drink restrictions are more liberal.
The tube in the stomach is less scary than I thought, and I don't feel it because my stomach area is dead.
And after 15.5 years I became tired of hemo. And my access is still the one done 16 years ago and who knows how long it will continue to work. And in the unit they operate the air condition and all the vents are above the patients, and it is freezing.

Wed, Jan-12-2000 1:30pm.
This afternoon I have the first flush of my new catheter in the PD clinic.
The incision is unusually small, that's what the nurse says.
There is a 2-liter bag with saline that flows inside the space inside in my belly and then drains. The whole process took 20 minutes.
While you do the exchange there should be no air in the lines. The little air that I had (left from the surgery) went up and caused a sharp pain in the back behind my right shoulder for about an hour (and one Advil). Then, at home, I read a post describing the same.
The tube in the belly is a little nuisance, you have to find a position in which it will not press too much against the body.
No shower for 6 weeks. I had more fun in life than that one.

Mon, Jan-17-2000,10:00am.
Dr. Schwarz. He checks me, then the stitches are removed.
PD clinic. Second flush of the catheter.

Mon Jan-24-2000 Third flush.

Mon Jan-31-2000 1:30pm. Start training. Trainer is Monique.
My wife learns how to make exchange. She makes 4 exchanges.

Tue Feb-1-2000 Hemo dialysis

Wed Feb-2-2000 9:00am. Training. I do the exchanges. Now I have to wash my hands.
I get off the chair with 2 liters inside. Wow!

Thu Feb-3-2000 9:30am. Last hemo dialysis.
While on dialysis the PD supplies arrive. It is a lot. I use 10 kg a day (22 lbs) and have supply for a month.
Fortunately we have a basement, and the carriers bring it all in.

5:00pm. First exchange at home. My wife and I do it together. They told us to warm the bag with a heating pad, so at 5 pm we start. At 6 pm it is still cold (about 80) but we start anyway. (Later we found that 3 minutes in the microwave oven will do the trick). It takes us an hour. This time it is 2.5 liters. When it is done I feet real cold for a while.

I was excited about my last hemo, but now I carry 2.5 kg in my stomach, and I really feel pregnant.
I cannot even sit close to the computer.
The manual says that this is normal and after a few days I'll not feel it anymore. They should know.
And I don't want to eat at all, I feel like I ate a horse.

10:00pm. Exchange with 3 liter. Painful. I can hardly sleep.

Fri Feb-4-2000 Training, doing the EPO shot.

Sat Feb-5-2000 First time in 15 years - Saturday and I am home. No more hemo.

Feb-6-2000 to Feb-11-2000. 4 exchanges a day.

Feb-9-2000 Email:
I am doing the PD all this week, and it looks like that's the only thing I do.
I do one before and one after bed time, and two others during the day, which are every 5 hours.
The exchange itself takes about 45 minutes, so before you know it you have to do the next one.
My wife injects me the EPO twice a week. I hardly feel it.
My wife bought me new pants. My size has jumped from 38 to 44, without gaining any weight yet, because I have 5.5 lbs. dextrose solution in my belly all the time.
Eating is more relaxed, but I have less appetite, The dietitian wants me to eat 127 gram of protein a day, I can hardly eat 27, and protein goes with phosphorus, which requires more phosphate-binders.
I already tried a baked potato, first time in 15 years (I ate only one half - I still have difficulties ignoring all the rules, before I see my first blood test). I don't drink more than 1.5 liters a day, which I almost did before, but now I am less thirsty.

I am still not sure if that was a good decision, but I'll give it at least a month trial. When I started hemo the first month was awful - I had bad taste in my mouth at all time and vomited every other day.

The one that suffers the most is our cat. The bedroom door is closed all day. Before, he could be there, just not at night. We have all the supplies there and we are worried. You know, from the hair he spreads we could have another cat.
For the first few days he felt rejected, and did not even try to get close. Now he feels a little better.

Fri, Feb 11-2000
PD clinic. Blood test. K=4.4, P=4.9, BUN=87 (used to be 50). I am dizzy.
Dr. Faber checks me. He wants me to do 5 exchanges a day, which makes it 4 hours between exchanges.
My feet and ankles are swelling. He thinks it is ok.

Sun, Feb-13-2000
I still don't feel comfortable to leave home.
I am not hungry, I cannot eat all the protein that they want me to, and I don't drink as much as I thought I would.
The only advantage right now is not having hemo, which I never underestimate.

Feb-18-2000
PD clinic. We have spent the whole day in the PD clinic for testing the PD clearance.
Doctor Faber. He is very nice and cooperative. He explains to me whatever I want to know.
We eat lunch in the cafeteria. First time in 15 years, I eat a full portion of French fries.
The test takes 4 hours in which they take samples from the drain every 2 hours.

Four weeks. An exchange every four hours. 7, 11, 3, 7, 11, am and pm.
I feel pregnant.
I don't leave home.
I hardly eat and drink.
I don't enjoy eating and drinking.
I gain a kg a week.
My BP is low.
Sometimes I am dizzy.
I learned to knead my belly while draining.

I was warned not to leave the catheter without two supports, and I have never left it unsupported, but I use one support only, at the exit site.
The PD unit gave me a flexible belt to support the catheter.
The belt is locked by Velcro and has two short straps for holding the catheter.
However, it is inconvenient during the day.
I take a shower every other day. To hold the catheter in the shower I made a "skirt" out of my underwear pants, which covers the exit site.
When I am almost done I rub anti bacterial liquid hand soap around the exit, then flush it gently with water.
Out of the shower I dry my upper body, put on the belt, move the catheter from the "skirt" to the belt, and finish drying myself.
I don't dry the area close to the exit, it is dried by the time I am done.
After that I apply Bactroban ointment (which I got from the very beginning), put two I.V. sponges back to back around the catheter and cover them with regular gauze, then tape them all. The tape is Medipore (soft cloth).

Mar-16-2000
My triglyceride is 680 (used to be 280).
I take Lopid. I puke at the middle of the night. And the next night. And the next.

Mar-18-2000
Cycler training. They scheduled us for 3 days, but we are done in one day.
I have to do 4 exchanges of 3 liter each, 11 hours at night, and one during the day.

Mar-25-2000
First time on the cycler. Takes us an hour to set the machine.
I use the belt to secure the catheter for the night, but I can't avoid checking it every few minutes.
3 liter exchange. Goes in and out. I can't sleep. Watch the machine all night.
In the morning, there is a 15-liter bag to drain.

Mar-27-2000
Night. I feel a huge pressure in my stomach. I do manual drain. There is 3.8 liter in my stomach.
The cycler was too lazy in emptying the previous dose.
I change the cycler program to 5 times a night, 2.5 liter each.
The PD staff is amazed. No patient has ever changed the cycler program himself.

Going to bed at 8pm is too early. I connect myself at 8pm, do the first exchange, then disconnect. I close my line with a minicap, and the patient line on the cycler with flexicap. At 11pm I reconnect and go to bed.

Apr-3-2000.
I am using the cycler for 9 days now, and I do one exchange during the day.
Still it is not enough dialysis. I have 'dragon breath' from my high BUN.
I wanted to improve my quality of life, now I have neither life nor quality.
I take 2 sleeping pills and still can hardly sleep.
PD is not for me. This is my conclusion, but of course, everyone is different.

Here are some of the problems, for anyone who considers PD:
I eat twice a day, no snacks, instead of normal eating habits before.
I eat my last meal at 3pm otherwise, because the pressure on the stomach, I have acid reflux (also called hiatal hernia) and I can't lie down in bed.
Even with 2 meals I can hardly eat, I just don't feel like eating and I feel weak.
I open a bottle of Coke and I can't finish it over the day (Before, I had to force myself not to finish it immediately).
I puke in the middle of the night, I have stomachache all the time (no infection thou).
I take 2 sleeping pills instead of 1, they hardly help and I am tired most of the day.
I can't turn from side to side in bed, which makes it even harder to sleep.
At night I check that the tube is in place all the time.
I can't take a shower without preparations before and after, because of the catheter.
For the cycler we have to carry in 33 lbs. of solution from the basement every evening, and to drain it in the morning.
My wife and son do it, I cannot help.
We have a lot of boxes and disposable to dispose every day.

The advantages: My own timing. That's the big one.
Don't have to leave home (a disadvantage maybe, don't underestimate)

The disadvtanges:
On hemo, I dialyze 3 days a week and forget it for 4 days, on PD it is a constant occupation.
On hemo, the responsibility for the treatment is on the medical staff, on PD it is on ME.
On hemo my weight was stable. On PD, because of the dextrose, I gain weight, already 11 lbs.
My cholesterol is 270 (was 160) and triglycerides is 600 (was 280).
Anyone who considers PD should ask himself/herself (and the doctor) how consumption of 150-200 grams of sugar every day will affect his weight, cholesterol, and triglycerides.

Now let me tell you about sex. With the cycler, the last thing you can think of at night is sex.
And in the daytime there are many things you cannot do with a catheter in the belly and 5-6 lbs. of fluid in the stomach. The catheter cannot be left without any support, so forget about being naked, even for just taking a shower.
A big problem is sleeping. The cycler makes a little noise. Every night is a continuous torture. I had sleeping disorders before but now I cannot turn or even get off the bed if I want to.

Apr-7-2000.
I spent most of the day in the clinic. It's final, next week I am back on hemo.
To add insult to injury, NOW they tell me that PD is better for little women rather than big men, and better for patients that still make some urine.
Maybe it is better for women. Most women have narrower blood vessels and they have the shunt in the upper arm where they are deeper under the skin, and hard to reach with the needles. Men have more muscles that produce waste while women have more fat. It makes sense that women can handle PD better, but still it consumes a lot of time and weight lifting. I heard that 3 out of 4 women are on PD while only 1 out of 4 men is.

The primary reason I decided to give it up was the triglyderides and cholesterol.
These are treated by Zocor, Lipitor Lopid, etc. All of them are toxins that hurt the liver, gall bladder and muscles.

Apr-10-2000 11:00am
I empty my belly to the last drop. No more PD.

1:30pm. First hemo.

6:00pm. Email:
I left home happy, and came back disappointed. It WAS cold, you just don't feel it without sitting 3 hours on the chair.
And I had to argue with the nurse about the machine setting.
And I returned home with a stomachache, and every pain makes you feel miserable, and all of a sudden everything looks dark and scary.

Apr-11-2000.
That was a bad night and then a bad day.

Apr-12-2000 Email:
A new day, everything is brighter.
I had a good night sleep, appetite is back, my pants size down from 44 to 40, and I feel better.

We saw the surgeon today, I have a date for the surgery on 4-27. This surgery is much simpler, no full anesthesia and no stitches. 
I did my last PD exchange 2 days ago and now I am like new.
For 2 months I felt very uncomfortable leaving home, and now I have just returned home from shopping with my wife.

Apr-27-2000 9:30am.
We are at the hospital on time. I am in. Gown, bed, nurse, questions, forms, IV.
Same story, opposite procedure. It is supposed to be simple operation, with local anesthesia.
30 minutes, says the surgeon to my wife.
11:30am
The OR is usually used for knee surgery. It is very cold and I am covered with warm blankets.
Oxygen mask. I close my eyes.
I feel a huge pressure in my belly. I say something. That was in the middle of the surgery. They immediately switch me to full anesthesia. The 30 minutes become an hour and a half.
I wake up.
First thing to check - are my knees in place? Yes they are.
Second thing - has the catheter been removed? Yes it has.
Back home. No shower for a week.
For a few days I still check whether the catheter is in place. It is not there.

May-3-2000 9:30am
Back to the surgeon. He removes the dressing. Small wound.
I can take showers. I am free.

May-18-2000
Baxter people come and take a ton of PD solutions from our basement.
To our surprise they say that everything is sent to the garbage.
We keep all cycler accessories, caps etc. and later bring them to the PD clinic.

Hope for the best, prepare for the worst.