A litte fine tuning

Saturday target: 6.3 kilos; actual loss 6.7 kilos, .4 kilos below established dry weight

Cramps: None … Woo hoo!

Blood pressure: Controlled… only got light-headed for a minute or two at weigh out.

Jane, my awesome primary nurse (get that $5 ready for me, Jane <grin>), did some fine tuning on my treatment yesterday and I made it through without cramps or crashing blood pressure. We did a profile to take most of the fluid off early in treatment, adjusted my sodium level up a bit, lowered the temperature a smidge, and when my BP seemed to start to drop (before I got my first physical warning sign bright lights) we lowered my head.

My target was still high, 6.3 kilos, but remember I left heavy Thursday by over 1.5 kilos. When treatment was over, I was .4 kilos under my established dry weight (which I think is still at least a kilo high).

I’m going to ask to see a dietitian at Mayo’s if I’m not already scheduled to do so. I want to ask the best way to diet while on dialysis and if there are aids to doing so. Even if my BMI (body mass index) would be good enough to qualify for a transplant, I know I need to lose weight to reduce the stress on my heart, joints, etc. But it’s become slow going for several reasons including the underlying diabetes, my age, metabolism, thyroid problems and lack of exercise.

I am beginning to believe a South Beach-type of diet wouldn’t be half bad for me. That’s a radical change since I’ve always felt that the best way to diet was balanced nutrition. But with renal complications, I’m not so sure.

Dialysis patients need to eat more protein not just to promote healing, my best friend nurse and her MD husband tell me, but to help pull fluid from my tissues. Since my kidneys are so injured, they don’t know how to process things like they used to. One thing they can no longer do is pull fluid from the tissues. Dialysis cannot help there because the only place from which the artificial kidney can extract fluid is the blood. In other words, if fluid passes into my tissues, it will not be extracted by dialysis.

But eating more protein can help do that because of it’s molecular structure. I’m not sure I could adequately explain the process but I certainly do understand the analogy: Protein acts as a magnet pulling the fluid from tissues into the bloodstream where dialysis can grab onto it and flush it from the body.

In other words, if I eat a steak my liver takes the protein in the steak and converts it into albumin and sends it into the bloodstream. The albumin acts as a magnet for the fluid trapped in my tissues. The question is, how big a steak should I eat?

Is 5 ounces cooked weight enough (about the size of a deck of cards, my diabetes educator would say) or should I eat 8 or 12 ounces? Should I eat a normal portion of protein and add a protein supplement?

Let’s not tackle the cholesterol issue right now, maybe later. But if you’re worried, I do take medication to lower my cholesterol.

I know it would be best for me to exercise and I have dusted off my treadmill and used it more often of late, but not as often or as long as I should. I’ve got to work on that to increase my matabolism, lose weight, increase my stamina, etc. I’ve noticed it can help calm my restless leg syndrome, too. So, I guess I should make it a goal, simple and easy to start and then add to it. Here goes: My goal is to walk 10 minutes a day on those non-dialysis days for one month starting today.

I may have to develop a little check list or chart to tack up top the posts to keep you apprised of my progress and to hold myself accountable to me and you. Probably not a bad idea.

I didn’t get the car washed yesterday, but I did get the Mayo form filled out. Today’s preparation check off list includes:

• Get laptop to take on trip
• Do another grocery run for Mom. Six double rolls of toilet tissue does not make her feel secure at home alone. I’m not kidding. Toilet paper, bread and trash bags are very important to Mom’s sense of security. That and “something sweet” to have on hand.
• Pack the hand knits I’ve made for my cousin Jean and her 21/2 grandkids who are my surrogate grandkids
• Pack my clothes
• Pack my meds (at this stage in my life, that could take a whole carryon itself) and toiletries
• Get my knitting bags in order. I’ll knit between appointments, on dialysis and in the hotel room at night so I’ll take several small projects (socks and caps mostly) that qualify as idiot knitting.
• Get all my electronics organized — nanoPod, cellphone, digital camera
• Check my packing list to make sure I’ve not forgotten anything
• Pack the car

I work until 3 p.m. today, so I think my late afternoon and evening will be full.

Another thing I’d like to do with this blog is give renal and renal diabetic patients a little help finding ways to eat healthy without being boring so I’ll be featuring recipes here or guiding you to other places on the Web where you can find good recipes.

Here’s the first, one my own recipe and one a low sodium soy sauce recipe.

No salt lemongrass vinagrette

1/2 cup rice wine vinegar

1/3 cup canola oil

3 Tbsp lemongrass paste

2 Tbsp cilantro paste

3 packets sweetner (I use Equal)

3 Tbsp lemon juice

2 Tbsp dijon mustard

Place ingredients in a lidded jar and shake well. Has a nice bright, lemon taste. I find the pastes in the produce section of my grocery. You can add a bit of hot with red pepper flakes or chili paste and you add garlic, too. You might try a little ginger for a more Oriental taste, too.

If you like Oriental food, you’ve probably mourned its loss in your diet. Here’s an idea: Cook your own vegetables and protein sources (a simple sauceless beef stirfry for example) and add that Oriental oomph with this very low sodium soy sauce recipe. You’ll find it HERE.

Note: The nutritional information also gives you potassium and phosphorous levels. Such a deal!

And so it begins

I wish someone would have warned me: “Fasten your seatbelt. It’s going to be a bumpy night” before I went into dialysis.

I knew kidney failure was serious. I knew the choices were dialysis or die. I knew I’d been sick for many months. I knew as lousy as I felt I still didn’t want to die and I knew I was in desperate need of help.

What I didn’t know was how severely my body would react to the initial dialysis treatments.  My kidneys had been poisoning me slowly for months and my body had become accustomed to its failing state.  Saying dialysis shook me to the core would be putting it mildly.

My initial diagnosis of kidney failure early in the year progressed quickly to End Stage Renal Disease and by March 16 I was under a surgeon’s knife having a perma-cath placed in my right jugular to allow hookup to the dialysis machine.

I didn’t feel at all well before or during the procedure and had asked for someone to wheel me from the entrance to the outpatient surgical unit at St. Luke’s in Cedar Rapids.

 I waited, groggy from the toxins in my blood, and was then taken into a private cubicle for questions and prep.

I was then rolled onto a gurney and wheeled into the operating area where a masked surgeon I’d never met bantered with the nurses and then asked me to turn my head to the left. “Ah,” he said in a cheery voice, “Look at that big beautiful jugular just smiling up at me.” An oddly funny but intimidating comment, frankly, because I’d somehow managed to ignore the fact a surgeon was going to take a scalpel to my jugular. That seemed less than …  um … desirable in many ways.  I was awake, though I felt no pain during the procedure.

What he did, in layman’s terms, was slip a length of plastic tubing into the jugular. The tubing splits where it dangles outside my body, each end capped — one in red and one in blue — color coded for venous and arterial flow. The resulting “pigtail,” which I tuck into my bra when not on treatment, is the access point for my dialysis. I now refer to it as my keg tapper and think Dracula would believe it a marvelous medical advancement.

I was feeling so rocky after the procedure that I asked the nurse to accompany me to where a taxi would pick me up.  She wheeled me down and out to the cab itself and gave me a hug and wished me luck as she helped me into the cab.  Nurses are generally compassionate, but I probably should have read the hug as recognition that I was having a more difficult time than most patients.

My first dialysis treatment was scheduled for the next day, St. Patrick’s Day, but the luck of the Irish didn’t seem to be with me.

I’d had a tour of the Mercy North Outpatient Dialysis unit several weeks earlier. It’s a pretty efficient operation. About 160 patients receive treatment through the center, the vast majority hooked up to the machines for 4 hours three days a week. The unit can process up to 99 patients a day in three shifts in its four 10-chair bays and one isolation room.

It’s very sterile, very cold – literally, very clean, very mechanical and smacks just a bit of a factory assembly-line atmosphere. But it has to in order to process the number of patients necessary.

Luckily the staff is warm, friendly and often funny which softens the sharp mechanical corners of the physical environment.

Dialysis Day 1:

I call a cab to take me to the center because I already feel weak and sick and have no idea what to expect from dialysis. I have trouble because I’m weak and feel off kilter but finally manage to get into the cab and back out once I arrive at the unit.

I feel unsure that I can walk any distance at all without some kind of assistance. I wait in the waiting room for a few minutes before my name is called and teeter to the scale to weigh in – I hate that even now. I was an 8-year-old the first time I was ordered to diet and I’ve hated scales and weigh-ins ever since.

I am led to a big green recliner chair and asked to stand while my blood pressure is taken. I manage to remain standing.

Once seated, my blood pressure is taken again by a nurse is a disposable lab coat and a protective apparatus that looks like a cross between a sun visor and a clear welding shield. She’s got a yellow mask on under the shield.

The nurse unwraps my pigtail and connects the two split ends to two tubes connected to a tallish machine at my left that’s hung with an IV bag of saline and a tiny red version of a K-mart bluelight special alarm. She tells me appropriate tops for dialysis patients are button-up. She punches buttons on the machine, sets programs, and suddenly the clear tubes turn dark red and — surprising to me– warm as my blood is pumping outside my body, through a series of Rube Goldberg twists and turns, clamps and toggles and a big plastic cylinder call the dialyser.

I’m on my plastic umbilical cord. It works kind of the same as Mom’s did, too. It cleans the wastes and excess fluid from my blood — it’s my artificial kidney — and returns the scrubbed blood to my body. It keeps at it for 4 hours before I’m detached.

Before she leaves my side, the nurse hands me a mask and proceeds to change the dressing on the jugular access, spilling betadine across a pristine white shield on my chest, the rusty red liquid spilling into a most bloody looking blot. Once the dressing is changed, I’m allowed to unmask.

She pulls a long robotish arm in front of my face and hands me a pair of earphones. At the end of the metal arm is a small TV. More robot than the metal arm, I watch TV hoping “Jeremiah Johnson” will somehow let me forget for awhile how bad I feel and how slowly the time is passing.

It does pass and though I felt drained and light-headed. I was able to make it into the cab and get home without further incident.

But that was just the beginning.