Talk about extra luggage.
When Katrina and John Aliengena boarded their Jet Blue flight to Aruba recently, they had 19 pieces of baggage to check in. And they weren’t just filled with clothing, accessories, toiletries, electronics and other miscellaneous items you might pack when going away.
Instead, the extra boxes they were bringing to Aruba were filled with Katrina’s dialysis machine and all the equipment and supplies needed to perform her life saving dialysis. The machine weighed 65 pounds and the additional boxes consisted of dialysate lines and tubing with dialyzers, intravenous fluid and other essentials needed to perform lifesaving hemodialysis while away.
“The Americans with Disabilities Act worked for us and we didn’t have to pay a penny for the extra baggage. It was wonderful. We left from Logan and Jet Blue met us at the curbside with a wheelchair for Katrina and a big cart for all the supplies. We zipped through all the lines, they took care of our passports, and it took just minutes to check in,’’ said John.
What is hemodialysis?
Hemodialysis – which can be done at a dialysis center where specialized nurses and/or technicians perform the tasks required during treatment, or which can now be done in the patient’s home – is a treatment for kidney failure that replaces the work of your kidneys to clear wastes and extra fluid from your blood. It uses a machine to filter your blood outside your body. A pump on the hemodialysis machine draws the blood from one of two needles into the dialyzer or what is referred to as an “artificial kidney.” Inside the dialyzer, your blood flows through thin fibers that filter out wastes, extra salt and extra fluid. From there, another needle and line returns your “cleaned” blood back to your body.
“Home hemodialysis offers patients a much more efficient treatment that results in cleaning more toxins from a patient’s blood so he or she can feel much better. On hemodialysis, you can perform longer and more frequent treatments while treatment at a dialysis center is usually confined to only three times each week,” said Dr. Gregory Braden, a nephrologist at Baystate Medical Center.
Other advantages include better blood pressure and fluid control, and better control of phosphorous, potassium and calcium.
“And you get to do it in your own home, being taken care of by your own family, and watching television or eating dinner while doing so, all on your own schedule,” added Dr. Braden.
Let's bring it on!
When Katrina shared with Dr. Braden her deep desire and hope to return to their time share in Aruba – and to be able to take along the extra baggage of her home dialysis equipment and supplies – the nephrologist’s immediate answer was to say, “Let’s bring it on!”
Katrina, 56, of Ware, said her husband “was worried sick” throughout the plane ride over the possibility of having left something important behind that would be needed to do the home hemodialysis in Aruba.
“It’s one thing if they lose your luggage and it’s just your clothing, which you can easily replace, or if you forgot to pack the toothpaste. So, John unpacked everything right away when we got to our hotel room. He was so relieved once it was all set up and my first dialysis session during our weeklong stay had been successfully completed,” she said.
“We did my dialysis early in the morning, so that we could enjoy the rest of the day on the island. There wasn’t a thing we didn’t do with our two best friends, who accompanied us on the trip. We went sightseeing, shopping, ate in some nice restaurants, and spent some time at the beach and sat beside the hotel pool. One of the coolest things we did was to travel to this place on the island where you sit on a little bridge and put your feet in the water where these little fish eat all of the dead skin off of them,” she added.
But, there is one fondest memory.
“There was a band on the beach and we danced to our wedding song in the sand, ‘Nobody Loves Me Like You Do,’ by Whitney Houston,” said Katrina, who just recently celebrated their 30th wedding anniversary.
Katrina first visited Dr. Braden as a patient in her early 20s back in 1985, when she was experiencing frequent urinary tract infections due to reflux surgery as a child.
“I was only six weeks old when I started to have issues with my urinary tract and underwent many surgeries over the years,” she said.
Her resulting condition, reflux nephropathy, occurs when the kidneys are damaged by the backward flow of urine into the kidney. Urine flows from each kidney through tubes called ureters and into the bladder. When the bladder is full, it squeezes and sends the urine out through the urethra. No urine should flow back into the ureter when the bladder is squeezing. Each ureter has a one-way valve where it enters the bladder that prevents urine from flowing back up the ureter. But, in some people, urine flows back up to the kidney creating a condition called vesicoureteral reflux. Over time, the kidneys may be damaged or scarred by this reflux resulting in reflux nephropathy.
Time for dialysis
“Unfortunately, recurrent obstructions and infections over the many years damaged Katrina’s kidneys to the extent that she developed end-stage renal disease, requiring a kidney transplant or a regular course of long-term dialysis, which she began in 2014," said Dr. Braden.
Going to a dialysis center was never an option for Katrina, at least that is what her husband will tell you.
“It wouldn’t be possible for me without John’s help. He was insistent that I do home dialysis and was committed to making that happen. He told me, ‘I want to keep you around and from what the doctor has told us, you will have a better quality of life from home dialysis and will look and feel batter,’” said Katrina.
Medicare, the federal health insurance program that pays most dialysis expenses and sets rules for dialysis providers, requires clinics that offer home hemodialysis to provide a machine, chair, blood pressure monitor, and scale for use at home. A person may also choose to deal directly with the medical supply company for this equipment. Under either method, a medical supply company will send supplies such as dialyzers, tubing, masks, gauze, and gloves to the person’s home once or twice a month. The clinic will bill Medicare and other health plans.
Training is a must
Most dialysis clinics require a person to train with a partner, who will be in the home while the person receives treatment. The clinic’s home training nurse teaches important safety techniques. Many patients and partners find it hard to have to place dialysis needles into the dialysis vascular access in the arm, for example. With practice, people on hemodialysis and their partners can learn how to place the needles with ease. During training at the Home Hemodialysis Clinic of Pioneer Valley Dialysis, a unit of Fresenius National Medical Care, Katrina and her husband learned how to set up the machine, place needles into the vascular access and take steps to prevent infection. They also learned how to respond to any alarms from the machine, the need to log the dialysis patient’s weight, temperature, blood pressure, and pulse, record details about the treatments for the clinic, clean the machine, throw out used supplies safely, and track supplies and order new ones.
“This is a major commitment for John. Katrina is lucky to have a husband so devoted to her care. He does everything for the dialysis procedure just as if he is an experienced dialysis nurse,” said Dr. Braden
“I really do have a lot of energy after my home hemodialysis treatments. Some people have to worry about getting a ride to their hemodialysis center, and that can be a problem in the winter. But, not for me here in the comforts of my own home,” said Katrina.
The Ware woman explained that when undergoing home hemodialysis, you are not supposed to leave the room.
All the comforts of home
“We turned my daughter’s old room into one where I would do my hemodialysis five nights a week, usually Monday through Friday, for three hours. We hired a plumper and added a sink and vanity to the room, and had an electrician come to make sure our service was up to par to operate the dialysis equipment,” said Katrina.
“We watch television and I have an iPad to keep me busy. We’re big Red Sox fans, so we watch a lot of games during the season. Also, my husband has his own business. So, once he gets me going and everything is running smoothly, he returns calls to customers. John cleans chimneys during the day and cleans blood at night,” she laughed.
Recently, Katrina had to turn to Dr. Braden once again for his help and expertise.
If kidney failure and cancer weren’t enough for one person to deal with in their lifetime, Katrina was diagnosed in the summer of 2016 with a pseudotumor – referred to as pseudotumor cerebri – in which a buildup of cranial fluid in the skull increases pressure on the brain, resulting in headaches and vision problems. While symptoms mimic those of a brain tumor, it is not a tumor.
Dr. Braden finds the solution
Katrina was placed on Diamox, which is used to treat a variety of conditions, and helps to remove excess fluid from the body. However, she began to have a reaction from the medication.
“It got to the point where I couldn’t walk because I lost my balance and I couldn’t eat because I would get sick. I still see Dr. Braden once a month in clinic, and my husband had to bring me in by wheelchair for one of my appointments. It didn’t take Dr. Braden very long to figure out my problem. I was toxic from the medication and on too high a dose for someone on dialysis,” said Katrina.
“Dr. Braden, he is the man. I told him that he can never retire,” she added about his diagnosis skills.
Aruba wasn’t the first time Katrina was away from home with her husband. The couple owns a camper on go on local trips, since she can be off dialysis for two days in a row, but no longer than that.
A dream come true
“To be perfectly honest, I never thought going far away with my husband would ever happen again. This trip to Aruba was like a dream come true, and when the plane landed, I cried happy tears,” she said.
Now that Katrina and her husband have one big trip under their belts traveling with all of her hemodialysis equipment, additional faraway trips are not out of the question.
“Yes, we’re definitely going to plan other trips, and we hope to return to Aruba next year,” she said.
Cancer delays kidney transplant
As for a kidney transplant, that was to be a possibility for Katrina until she developed a rare abdominal cancer called leiomyosarcoma, which has since recurred twice. To be eligible for a kidney transplant, you must be cancer-free for between 3-5 years. Katrina has only been cancer free for nine months now.
Dr. Braden calls Katrina “a survivor.”
“She is teaching all of us, her family and care providers, how to survive some of life’s greatest maladies with grace and dignity, and with the endearing attribute that she will succeed and survive. It is indeed an honor and a pleasure for all of us to care for her,” said Dr. Braden.
Dr. Braden can be reached for an appointment at Kidney Care and Transplant Associates of New England, who have privileges at Baystate Medical Center, Baystate Franklin Medical Center, Baystate Wing Hospital and Baystate Noble Hospital.