No Such Thing as Traveling Light

I have taken these photographs so that people begin to understand what living with dialysis is all about. Pictured here are the dialysis and diabetic supplies I have to bring with me for my seven-day, six-night stay in NYC.



On the futon:

* cassettes (tubing) for nine days--always figure for some faulty set-ups
* blood pressure cuff--I take my BP at least twice a day to determine what kind of dialysis solution I should use.
* scissors for cutting holes in the frame delivery pads (see below) in order to customize them for my insulin pump infusion set
* Lysol for cleaning the room in which I will do dialysis. I Lysol everything down when I'm setting up each night and when I'm changing the bandaging every morning. Sure, they've got Lysol in NYC, but I wouldn't know where to get it when I step off the plane.
* patient extension lines--These are vital, as I don't know how far the toilet is from the dialysis machine.
* extra batteries for the insulin pump



* prescriptions for meds in case they are lost or don't arrive
* PD belt for holding the transfer set in place while doing dialysis; can also be worn during the day to secure the transfer set under my clothes
* all my meds, each breakfast and dinner compilation put into separate snack bags and then all the breakfast bags and all the dinner bags put into their respective sandwich bags
* ponytail ties for securing the baby socks on my transfer set when I don't want to wear the PD belt during the day
* salve to diminish the scars from my heart surgery
* blood monitor with lancets, lancet pen for delivering the stick, alcohol swabs, and test strips for determining my blood sugar level
* extra test strips
* hydrocortizone cream to attempt to combat the redness around my dialysis exit site
* antibacterial cream for daily use about the exit site
* surgical masks
* letter from my doctor explaining to airline personnel why I need to take my dialysis machine onboard
* paper toweling, which I use after I wash my hands, as bath towels tend to collect germs
* antibacterial soap
* transfer set pads--The needle for the insulin pump easily comes out of my skin when putting on and off clothes and such. These sticky pads help keep the needle secure, but I have to cut a hole in them to allow for the tube to slip out while taking a shower.
* insulin syringes in case my insulin pump fails and I have to switch over to shots
* mini-caps for putting over the transfer set during the day when I'm not doing dialysis
* medical tape
* baby socks for covering both my transfer set and my insulin pump (a new one every day)
* approx. 30 pages of my recent medical history in case I need medical attention while in NYC
* blank patient records for writing down my BP, blood sugar, amount of insulin taken, readings from the dialysis machine regarding my treatment, my weight
* sterile gauze
* sharps container for collecting used syringes, needles, and lancets, as it is against the law to put them in the trash
* gynecological wipes--During the dialysis set-up, I wash my hands three times with antibacterial soap, then use a gynecological wipe to get any residual dirt or germs off my hands
* infusion sets--These are the mechanisms that deliver the needle into my body for delivery of insulin from the insulin pump. They need to be changed at minimum every three days; however, because the infusion-site needle so frequently comes out, I have to bring plenty of extra infusion sets.
* syringe, which becomes the insulin cartridge; the catridge is full of insulin, enough to last approx. three days
* alcohol swabs
* clamp for opening dialysis-solution boxes and bags
* insulin plus an extra bottle
* CDX II, which assists in hooking up the dialysis bags to the tubing



There goes one full suitcase of stuff!

Then I have to carry on the 28-pound cycler, pictured here with the three bags of solution I use every night. To protect the cycler and also to muffle its gurgling and farting all night long, I wrap it in two small quilts. Thank goodness, Baxter, the dialysis supply company, delivers the boxes of solution. But still, I'll have to lug those boxes from the hotel where HBO is putting me up to the hotel where I'll be staying afterwards. Quite the workout!

My biggest concern is getting the machine onboard. Air Canada had me in tears this summer. The personnel refused to let me carry the machine onboard. American Airlines was just the opposite, very accommodating, very kind.



And so, folks, yes, it is possible to travel on PD (peritoneal dialysis), but it's a chore. Just don't ask me to bring you anything back from New York! It won't fit!

Ooops, I forgot the bleached hand towels that I also need to bring. I put a new one on my lap each night and each morning during set-up and capping-off so that the transfer set does not come in contact with my bed clothes, which, like everything else, are carrying germs. This is why I lay everything out, so that I don't forget something. So add seven hand towels to that pile.

Diabetes is Much More Than Taking Shots

When the UCLA cardiologist said no to a kidney-pancreas transplant (but yes to a kidney transplant), he said that the risk of blood clots during surgery far outweighs the inconvenience of having to take insulin shots. Wow, this shows how little understanding even doctors have of what diabetes entails.

Last night's medical emergency would never occur if I had a functioning pancreas. Neither would the effects of sky-high blood sugar, like kidney disease, blindness, amputation, etc. I want a new pancreas because I don't want any more paramedic visits, hospitalizations for diabetic complications. Sure, it would also be fantastic to never check my blood sugar again, to never wear an insulin pump or take shots, to travel anywhere and at any time at a moment's notice without having to concern myself about keeping my insulin cool and how many syringes or infusion sets I need to pack.

But that is water over the bridge. I was given a "no" to a pancreas, so I have to accept that. A kidney is certainly better than nothing.

Thank God This Happened Before I Left

Last night I experienced very low blood sugar. By the time I was aware of what was transpiring, I was way too far gone. I stumbled about the apartment, managing to get to the refrigerator for some juice. I drank some grapefruit juice out of the carton, but perhaps this wasn't sweet enough. I began to panic, evidently screaming for help, because Jason, my next-door neighbor in the front half of the house, came to my door. I must have said something frenetic and incoherent, so he called the paramedics.

The fact that I can scream so loud that neighbors hear me is something that surprises me, since I have never screamed in my normal state of existence. It's interesting to note these things about oneself--that there are regions within us that we can access when we need to. Certainly a life-threatening situation like low blood sugar level is one of those times that the body and the mind bring out all that lies hidden during our everyday life in a final effort to avoid death. Last night was just such a time.

By the time the paramedics arrived, I was flailing about on the floor next to Rasputin's kennel. (I had put him inside it and locked the door as I always do. He loves the security and privacy of this small space. He loves being incarcerated when he beds down for the night!) I was screaming, too, and Rasputin was probably getting scared. He barked vociferously at the paramedics, but couldn't reach them to bite.

About the time the paramedics arrived, Aaron arrived home from his restaurant job. The paramedics measured my blood sugar at 40, and it had no doubt been much lower, since I had already had the juice. They stuck me twice in my skinny, little left wrist in an attempt to find a good vein. I felt this pain, though usually when I am given an emergency IV of glucose I am so out of it that I don't feel anything. The glucose began to revive me, and I was able to tell them my name, address, age, and birth date--information that is beyond my reach when my blood sugar is dangerously low.

I signed a release indicating that I did not want to go to the hospital. I felt dizzy, exhausted, beat up, but I was coherent. My body and clothes were soaked in adrenaline sweat, the sweat of death, of fight or flight, the body's final effort to kick-start action. I took a shower to rinse this smell of death from me, but it remained, and I smelled it on my fresh clothes in the morning.

Yesterday I only tested my blood sugar five times. I will have to make a concerted effort to check it much more often when I am in New York. It's one thing being home, where I have concerned neighbors and a wonderful son. It's another thing being in a big city where no one knows me from Adam.