by Cheryl Thomas, RDH
My name is Cheryl Thomas. I would like to share an incredible story with you. My story is about my personal experience with end stage renal disease and renal transplantation.
I was born May 14, 1965. I am the youngest of four children. I grew up in the Dallas metroplex. I enjoyed playing volleyball and basketball and was very active even after graduation from high school.
I became a dental assistant while still in high school and found dentistry fascinating. I knew pretty soon that this was going to be my career. After graduation from high school in 1983, I began taking courses at the local college. I delayed my studies for a short time. I married and lived in Germany with my new husband who was in the Army. Even while in Germany, I studied books on dentistry. Once stateside again, I began taking my dental hygiene prerequisites at night school.
I achieved my first AAS from Dallas Community College. I was accepted into the dental hygiene program at Tarrant County College in 1991 and graduated with an AAS in dental hygiene in 1993. Immediately after graduation, I enrolled in the post AAS program offered at Texas Women's University. Being a new graduate, I found myself enthusiastic about paying off those new student loans.
After my first year, I began to notice fatigue and muscle pain. I was working 51/2 days a week and going to school, and attributed my fatigue to pushing myself too hard. I had hoped to get my bachelor's in dental hygiene and then apply for dental school. But, after delaying school for a semester, I didn't notice any improvement. When I awoke in the morning my feet would burn as I walked on them. When I tried to go to sleep, I found that my muscles ached so bad that I had a very difficult time falling asleep. I was cold all the time. I began to have uncommon neck or shoulder spasms that lasted for days.
Being the physically active person I was, I really thought it was all in my head so I continued my exercise program. My family history included a father who was Type II diabetic. I also had a sister that was diagnosed with multiple sclerosis at an unusually early age, 21. My sister had told me about fibromyalgia, for which she had been diagnosed. Since I hadn't been sleeping, I thought "that must be it."
However, I came down with the flu in February 1996 and I didn't recover from it immediately. I began coughing up blood. I had pneumonia. Still, after a couple of rounds of antibiotics and four chest x-rays, my physician thought I was OK. When I returned to her office and asked for a hematocrit because I was still fatigued, she performed one just to appease me. And, the hematocrit results were fine. My life changed in September 1997 when I obtained independent health insurance.
I was due for my yearly GYN exam. Again, I still found myself tired. I asked for a full panel of blood work from my gynecologist. Like my previous general practice physician, the gynecologist assured me that there was likely nothing wrong.
However, much to my surprise and relief, I received a phone call from my new gynecologist only one week after my yearly physical. She was concerned that I had an elevated Creatinine level and I was extremely anemic. Of course, the first thing I did was dust off my anatomy and physiology book and re-introduce myself to the urinary system.
I was first referred to a doctor of internal medicine. I was subjected to more blood work and it was here I was instructed how to collect my first "24 hour urine." He referred me to a nephrologist. More blood was withdrawn and more "24 hour urine" collections were obtained. I was then referred to a rheumatologist. It was at this point, I began to believe, "Wow, there really is something wrong. It's not just in my head." Once all the tests were back, it was confirmed by an antibody in my blood that I had ANCA+ Vasculitis (Antinuclear cytoplasmic antibody).
I had 28 percent of my renal function left. Vasculitis is an autoimmune disorder, often associated with Lupus. The disease was discovered about 10 years ago. It is often "kicked off" by an acute infection such as pneumonia. It is considered the "hurting disease" and "the cousin to lupus."
I also learned that autoimmune diseases often appear in families as "clusters." Often when families encounter multiple autoimmune disorders they are rarely the same disorder. This is referred to as a "cluster." I have two sisters and one of them was recently diagnosed with ankylosing spondilytis — another autoimmune disease.
After a renal biopsy, it was confirmed that most of my glomeruli had scarred and were non-functioning. The standard treatment for this disorder is oral chemotherapy (Cytoxan) and high doses of prednisone. I felt like I had to try, so I began treatment. Within the first month, I had gained 30 pounds. When I discontinued treatment four months later, I had started at 140 pounds and ended with 210 pounds. It hurt to touch my skin because I was retaining so much fluid. I vomited every day at least once.
The high doses of prednisone made me an emotional wreck. I lost some of my eyelashes and my hair thinned a bit, but I didn't lose all of it. At the end of my therapy, a last ditch effort was made by IV Cytoxan and prednisone pulse therapy (1000mg of prednisone per day, administered for 3 days). At the end of four months, I was glad that I tried but I was through. I came home from work and told my husband quietly, "I can't do this anymore."
Once I decided I would feel better on dialysis, I had to talk the doctors into it. Kidney function is usually below 10 percent before patients are given dialysis. I was given my first Glowfil test at this point. A Glowfil is a more exact measurement of kidney function than a 24 hour urine. You drink iodine and are injected with radioactive iodine, and you must urinate when instructed over a period of time. My kidney function with my first Glowfil was at 9 percent.
Much to learn
I was cleared for dialysis, but there were some things to learn and some decisions to be made. First, the kidneys are a very important part of our bodies. Not only are they used to eliminate wastes from the body, they maintain blood pressure, balance fluid, and balance hormones and electrolytes. While I was pretty healthy before this started, I soon had elevated blood pressure, dangerously high levels of potassium in the blood, excess fluid and often a cessation of menses.
Next, I had to choose what type of dialysis I wanted. Hemodialysis is the type of dialysis most people are familiar with. Patients generally attend dialysis sessions three times a week, each session lasting from three to six hours. The wastes from the blood are filtered out by a dialysis machine. This is performed at a dialysis center. Travel becomes an inconvenience because you have to make arrangements where you are visiting and work around their schedule so you can still get your treatments. Often patients experience "lightheadedness" after treatments because of the amount of fluid taken off during the procedure. The benefit would be that the clinic does it all for you. You are on a strict fluid and potassium intake.
The other option would be peritoneal dialysis. I was lucky and was introduced to peritoneal dialysis by my nephrologist. This procedure uses the lining of the peritoneum to remove wastes through osmosis. A catheter is surgically placed in the abdomen. After the catheter has healed the patient goes through a two-week training period on how to do dialysis at home. The dialysis fluid, dialysate, is inserted in the catheter and left in the peritoneal cavity for a prescribed period of time. Then the dialysate is drained and replaced.
The solution will be constantly in the peritoneal cavity unless it is being drained. The patient can do these "exchanges" throughout the day manually, or she can elect to get a machine at night that does it for her. This is called CAPD, Continuous Ambulatory Peritoneal Dialysis. The advantage to this type of dialysis is you can have more flexibility in travel. Fluid and potassium restrictions still exist; however, they are not as strict as those for the hemodialysis patient. I was very fortunate to have some sound advice in choosing my method of dialysis. A good friend of mine pointed out that peritoneal dialysis was a way that I could be active and have some control over my condition. It was the best advice I have ever received about my disease. And it helped me begin to regain control of my life.
The day you go on dialysis, you are eligible for Medicare. That helps. You have a very expensive disease and you have an opportunity to get additional insurance from the government to help. My experience with Medicare was very positive. Unfortunately, current legislature ends Medicare coverage for transplant recipients three years after transplantation. The cost of a renal transplant is approximately $110,000. It is estimated that medical expenses each year after transplantation equal the $100,000 in medications and medical care. To avoid rejection and infections, transplant patients receive full panels of blood work frequently.
Hopefully, legislature will be passed that will assist patients past the three-year mark. Some recipients are forced to skip medications or doctor visits because of lack of money. I am forced to keep my independent insurance to help finance the cost of medical care. My own premiums recently elevated to an astounding $750 a month. This is in addition to a group policy through my work.
My family, friends and work are extraordinarily supportive. Without them I would have been lost. It is through them that I find strength. When it was time to talk about transplantation as an alternative treatment, my brother was adamant that he was "the one." He was right. We were a 50 percent match.
I began dialysis May 1998. My peritoneal catheter was surgically placed in my abdomen May 10, 1998. I went though a two week training period and actually began dialysis May 31, 1998. Immediately, I began to feel better.
The excess fluid I had accumulated came off rather quickly and though I never returned to my original weight, I felt better than I had in several months. The biggest obstacles I faced were high blood pressure and depression. Soon I was medicated for both. The blood pressure medication worked fairly well, but I stopped the anti-depressive medications. I never felt really bad, but I never felt really good either ... and I couldn't stand not feeling good.
My brother was eager to start with testing to see if he might be a compatible donor. HLA, or haplotypes, are what determines who is a match and who isn't. Each person has six haplotypes, as they receive three from each parent. A parent is a guaranteed 50 percent match.
However, a sibling has decreasing odds of being a match. Two siblings could have an exact match, a 50 percent match, or no match at all.
Once finances were established, I was the first to be tested. Not all patients who want a transplant make it to the "organ waiting list." A multitude of tests are taken not only to establish HLA, but also to determine the health of the patient. Things that would contradict surgery would be advanced pulmonary failure, active cancer, inability to tolerate rejection medications, psychological conditions that would interfere with the patient being able to take the medications or follow doctors' recommendations, or cirrhosis of the liver due to hepatitis.
After a battery of tests, a patients' case is presented before a board of doctors and reviewed. If the doctors agree that the patient's surgery will be successful and the quality of life improved, they are put on "the list." This process can take a month or more.
After you get on the list, you're given a pager should a cadaver donor become available. My pager went off three times the three months I was on the list; heartbreakingly, they were all wrong numbers.
Off to surgery
My brother began his testing within weeks after I was put on the list. During his first visit, 18 vials of blood were drawn. After numerous other tests, it was determined we were a 50 percent match. On March 18, 1999, my brother and I reported to Baylor Hospital of Dallas early in the morning. My brother was taken to surgery two hours prior to me. That was the most difficult part of the surgery, I had real questions at that point about whether I should have let him do this. Luckily, I was allowed the luxury of having my mother and husband hold my hand while I waited in pre-op (and surprisingly I knew my nurse).
Recovery for me was very quick physically. My brother and I were kept on separate floors. The day after surgery I wheeled myself up to his room. The following day I used a walker to see him. I was discharged after five days. My brother was in an enormous amount of pain, but he was released after seven days.
The real challenge started when I returned home. I was on very high amounts of prednisone and cried at the drop of a hat. It was weeks before I overcame the depression. The biggest challenge in my first year of transplantation was my blood pressure. It literally took a year to find the right combination of hypertensive medications. My blood work was doing great. I returned to work two months after my surgery.
Transplant recipients often take a trilogy of immunosuppression medications. I enrolled in a study drug and took prednisone and Neoral (a cyclosporine drug). For the second and third year of my transplant my blood work progressively got worse and worse. My kidney function was decreasing. At the end of my third year, my study drug was "unblinded." The higher levels of the rejection drug were causing nephrotoxicity. My dosage was lowered and now, after 41/2 years, is very close to being normal.
I moved to the Texas Gulf Coast and began my own business, "dentalInspirations, Inc.," in 2002. I provide continuing education seminars for dental personnel regarding the dental management of the renal transplant recipient.
Recently, I've expanded my information to include dialysis. Eventually, I will address all organ transplant recipients. It is my direct experience with end stage renal disease and renal transplantation that sets my lectures apart. It is my goal to become the liaison between the transplant and dental communities.
More than 80,000 patients are listed on the organ transplant waiting list. More than 50,000 are awaiting a renal transplant, and 100,000 new cases of end stage renal disease are diagnosed each year.
We named my kidney "Kinney" shortly after my transplant. Today, Kinney and I are doing fine. My brother, Robert, is also doing great. We live in Galveston and visit often. His daughter, Haley, is 10 years old. She has had three kidney infections within the last year. She has been tested for the ANCA+ antibody, and tested negative. They have also done other tests that assure us that she has no scarring of her glomeruli.
Early check ups
Patients who have diabetes and high blood pressure are at the highest risk for end stage renal disease. Renal diseases such polycystic disease, glomeronephritis, focal segmental glomerunephrosclerosis (my condition confirmed by biopsy), hepatitis C, HIV-associated nephropathy, and system lupus erythematosus are also common causes.
If you or a family member has any of these conditions, it is very important to have routine check ups and blood work, which are the key to catching renal disease early.
And early treatment is the best way to avoid or delay end stage renal disease. Drinking plenty of water and looking for the signs of renal disease are also important: frequent urination that has a foul odor or contains blood; fatigue; or muscle discomfort. We'll all be watching Haley with a close eye to make sure all is done to prevent any renal damage.Clinical protocols
Renal transplant recipients are chemically immunosuppressed. With the medications of today, acute rejections are usually managed. The biggest obstacle today is avoiding and eliminating infections. The one-year survival rate after renal transplantation is 90 percent. The five-year survival rate is more than 80 percent.
The general practice dental office will see more of these patients. It is the responsibility of the dental auxiliary to learn the clinical protocols of these patients and to become sensitive to the quality of life issues that are associated with these patients.
Dental manifestations include: xerostomia, fungal infections, and an increase in calculus formations and caries. Gingival hyperplasia is a side effect of Neoral and generic cyclosporine. It is treated by scaling and root planning, gingivectomy, and/or antibiotic therapy. Recently, metronydazole has shown some promise in treating gingival hyperplasia. It is most often associated with plaque; however, recent studies have shown that HLA matching may determine who is more likely to develop gingival hyperplasia.
Antibiotic prophylaxis is indicated following the American Heart Association guidelines. Only emergency dental work is performed the first three months after surgery.
Some prescription and over-the-counter medications are nephrotoxic. These medications always need approval from the transplant team. Therefore, open communication between the transplant team and the dental team is required.
For example, ibuprofen can interfere with blood flow to a grafted organ and is not usually recommended. Herbal drugs are never allowed. St. John's Wort is known to lower cyclosporine levels.
Oral hygiene cannot be stressed enough. Patients should receive professional dental cleanings every three months to prevent infection. Home care should include brushing two to three times and flossing once daily.
In addition, antibacterial, antifungal, or fluoride gels may be appropriate. Immunosuppressive medications can mask infections. Transplant recipients should be educated of the side effects of their medications and taught the signs of infection: bleeding, swelling, and tenderness. Immediate dental care should be obtained immediately per any sign of infection. While on dialysis, patients are taught to manage xerostomia by sucking on lozenges or ice. This could become a long term habit of the transplant recipient. Patients should be counseled on discontinuing these habits to avoid cavities. Sugar-free candies or gum would be a good substitute.
Furthermore, biofilms are often found in dental water lines is a concern especially for the immunocompromised patient. Lines should be flushed thoroughly between patients and a backflow prevention devise should be utilized.
Office staff with any communicable respiratory or dermatological infection should postpone contact with immunosuppressed patients. Furthermore, dental auxiliary should have current immunizations. While on dialysis, patients may have been exposed to hepatitis.
As with all medical/dental conditions, early detection is the key. Three month cleanings and exams are the best way to prevent infection in the transplant recipient. Re-enforced with oral hygiene instruction, the transplant recipient can be easily managed.
Cheryl Thomas, RDH, currently resides in Galveston, Texas. She can be contacted at [email protected], or visit her Web site at www.dentalinspirations.org.