KIDNEY FAILURE - A PERSONAL JOURNAL

[Peter Langley]

Evaluation and Placement on THE List, and Dialysis

After considerable evaluation, my records were forwarded to the kidney transplant unit at Shands Hospital at the University of Florida. For information on the University of Florida, you can access http://www.ufl.edu/ which also offers links to sites on Shands Hospital and several kidney transplant sites which are Shands specific.

After the usual bureaucratic delays of several months, including an evaluation of my insurance coverage, I was given an appointment for evaluation for transplant in early January 1998. The evaluative process - including testing of my son as a possible donor - began in January and finally culminated in August 1998, with my placement on the kidney transplant list to wait for a cadaver donor.

[Mel and Pete] My son volunteered to be tested, as I indicated, and was found to be a match. However, extensive testing at a hospital nearer his home in Louisville, Kentucky, indicated a slight cardiac problem which raised questions about his suitability. As he is, of course, far younger, and as he is just starting his adult life, I felt that placing him at any risk was unacceptable.

I believe that this position was completely validated when my older brother lost all kidney function and was placed on emergency hemo dialysis the week I was scheduled for surgery to place access for my peritoneal dialysis.

On a side note, before having my son tested, we checked with my insurance carrier, and were assured that his tests would come under my insurance coverage since all of his tests were to determine suitability as a transplant donor. Blue Cross and Blue Shield of Florida immediately accepted some of the expenses and rejected others with the explanation that, as an adult, he was no longer covered on the family plan. When the matter was explained to them, they often changed their position and covered. However, other times, the carrier simply ignored the correspondence. I finally gave up and paid several thousand dollars in bills, so that the harassment technique of the insurance carrier was finally successful in the avoidance of bills which they had indicated they would pay.

As the deterioration continued downward below a function level of 15%, plans were made for me to go onto peritoneal dialysis. In February 1999, I underwent the surgery for insertion of an access point into my peritoneal cavity and, following training at the Ocala Regional Kidney Center, I began dialysis at home, using four exchanges per day of three liters per exchange. I have kept my certificate of completion of the training, and while somewhat trite, it has meaning to me. Both Thelma and Maxine at the Kidney Center were wonderful.

The social worker appeared concerned that I was not more depressed, but that is not my style. Also, the dietician was somewhat overbearing, but Thelma and Maxine, the peritoneal nurses, were so good that they overshadowed any shortcomings others might bring to you.

I also found that my surgeon in Ocala was miraculous. Charles Neustein is almost retired, and only performs this type of surgery. Thank God my kidney group was able to convince him to stay this active. He repaired an umbilical hernia and inserted the access tube in only a couple of hours, and I was cleared to leave the hospital by lunchtime on the day of the surgery. Moreover, he talked at length with both myself and my wife before surgery, and after surgery. He also sent messages to my wife in the waiting room during surgery to keep her up to date. That, alone, set him apart and made my wife, as well as myself, a huge fan.

My brother’s experience in Gainesville, when he went for the peritoneal access, was quite different. The surgeon at North Florida Regional Hospital put in the wrong tube on the first try, and took two tries to insert the proper one on the second effort a week or more after the first. He had blood in his tube for several days, and has had continuing problems with his peritoneal dialysis. I can offer no suggestions to those of you out there, but wish you luck in obtaining the type and quality of service which I received.

The bad news is that my experience was based on pure, dumb luck. My family physician sent me to an excellent urologist with an unbelievable nurse, and the surgeon was part of that doctor’s group. Since Ocala is more than 45 miles from my home, it would have been just as easy for me to have chosen a doctor at another city, and my experience could have been quite different.

I found that, with a minimum of planning and care, there was no pain involved in the process - to my shock - but I learned that there was a considerable amount of time involved in the process. I also found that the casual warning not to allow bubbles into the peritoneal sack should have been emphasized more greatly. The only real pain I have had was on the two occasions that bubbles entered my peritoneal sack. That pain was shattering. The good news was that the pain of the bubbles in your shoulder goes away after a few hours.

I also learned - through practice - that exchange in an automobile are simple, and that even the back of a pick-up truck causes no problems, provided that you do the hookup in a protected environment. One word of advice on automobile transfers: put your window down a little and stick the edge of the bag on your transfer set in the window to hold it. It will be secure, and will be high enough to allow for a flow.

As I have said, the nurses in the peritoneal unit at the Ocala Regional Kidney Center were godsends. Their calm approach to everything made dealing with new and different situations far easier than would have otherwise been true. My brother’s experiences in Gainesville indicate that such support is not universal, and neither is the apparent quality of care.

I would suggest that you go to more than one dialysis center and talk to the personnel you will be working with. Otherwise, you will be taking the luck of the draw. In my case, the luck of the draw was a royal flush, but it is equally possible - as shown by my brother - to have a pair of deuces.

Other hints to peritoneal dialysis which I have discovered:

If you are a hairy person by nature, as I am, don’t worry about bald spots around the access site and where the tube is taped to your belly. Give up on your modesty and shave. It makes all the difference when you are changing tape several times per day.

I have found that my three-year-old granddaughter has no problem with me being hooked up to dialysis, other than it may slow me down when she wants me to change videos. Slightly older children may have questions, but a perfunctory answer appears to satisfy them, as the questions are usually generic, such as “what’s that bag?” My wife has had no problem with it at all, but one brother-in-law leaves the house if I am about to hook up. You must judge others’ reactions and deal with them accordingly.

Normal life activities are not hindered by being on peritoneal dialysis. However, you are carrying an extra three liters (in my case) of liquid, which weighs eight pounds, and your clothes fit badly. Walking and swimming are not affected, although there are some precautions with swimming which are carefully explained to you during the training.

Making love is not affected and, in fact, has never been better in my case. I tried swinging a golf club, however, and the liquid shifts on the follow through, creating an unusual sensation. It is not at all painful, but I fear it could affect concentration on the game. I was informed, when I asked, that SCUBA diving would not be a good idea because the effect of pressure on the access tubing and the flooded peritoneal cavity is unknown.

I also learned that travel is possible, with some planning. The company which provides supplies will provide them to a home or a hotel with sufficient lead time. However, I would suggest that some care be given in picking your hotel. Make sure that they can assist you in accepting the shipments, and that they will not charge you an exorbitant additional fee due to your disability, if you are willing to accept it as such.

Two places which we have stayed showed no concern for the fact that these supplies are - literally - a matter of life and death. The Sheraton Atlanta lost one box of supplies, but since the shipments include extras, this was not a problem. However, the hotel also charged $5.00 per box for “shipping and handling” which seemed excessive for dealing with medical supplies of a guest. They did, with advance notice, provide a microwave without charge.

That issue, however, was minimized by the treatment I received at the Key West Hilton Resort and Marina. When my wife and I arrived at 10:00 at night, I was informed that nothing had been delivered. Only after numerous trips to the desk, and even more telephone calls did someone remember that the supplies had, in fact, been delivered and stored. I finally received the supplies after a heart-stopping several hour wait, and without an apology.

The supplies were, for some reason, short, and I called the supplier on Friday, being promised delivery by 12:30 p.m. on Saturday, well within the time frame that I would need them. At 2:30 p.m. on Saturday, I checked at the desk and were - once again informed - no supplies. A call to the suppliers’ emergency number led to a search with Fed Ex, and - amazingly - the supplies had been delivered to the hotel in a timely manner, but were again misplaced by the desk. Again, no apology. Further, the hotel charged $20.00 per day (a total of $60.00) for the use of a microwave which could have been purchased at any discount store for $69.00.

In an update, I sent an E-Mail to Hilton corporate to complain about the lack of concern, the charges, and the unnecessary telephone calls and charges. I have received an apology, and a promise of a refund of $100.00. Also, corporate has sent notice to the Key West Hilton Resort and Marina that its actions were not acceptable. Perhaps this has been a learning experience for all.

By comparison, the John Rutledge House Inn in Charleston, South Carolina, had the supplies in our room before we checked in, without charge, so travel without worry is very possible if there is any sensitivity in the administration of the hotel or Inn where one is staying.

Likewise, when I was making plans for a vacation at Sandals in the Bahamas, I called to check on any problems, and was assured that there would be no additional charge and no problems. They even have personnel specially trained to deal with medical issues, which I have found to be unique in my experience. Now, however, if “nothing don’t happen and the creek don’t rise,” I will be beyond such concerns by Christmas when we are going to Sandals.

One other issue which arose with me and, I must assume, with persons who are already insulin-dependent diabetics, is that the sugar water solution used in peritoneal dialysis can really mess with your blood sugar levels. My insulin dosage has basically doubled, and I have changed the solutions used in the dialysis process, so that I am using only one of the most concentrated solutions instead of the two that I began with. It has lowered somewhat my return, but I am still in an acceptable range, and the change has definitely helped my blood sugar readings, although I continue to be high and further adjustments are clearly called for.

A Miracle Offer, or Two, or Three