I started getting headaches sometime last summer. Nothing too bad at first, but they kept getting worse and more persistent. Since I work around a lot of computers, television monitors, bright lights, etc., I figured that it was probably eye strain and I just needed glasses. As the summer rolled on, the headaches got progressively worse. Usually I refrain from any kind of pills or medication, but before I knew it I was popping aspirin and various painkillers several times a day.
Now mostly my approach to healthcare at this point had always been to ignore it and hope it eventually goes away. This had served me well throughout my life. I avoided all hospitals, doctors, and health care profession like the plague. Finally, the headaches grew intolerable and debilitating. I had no choice except to make the time to see an eye doctor.
When I arrived I had a typically awful headache. I explained to the eye doctor about my “eye strain” problem. He did a few tests and determined that my eyes were actually fine. “But,” he continues “you’ve got a pretty big problem and it has nothing to do with your vision.” I screamed, “Oh NO!!! Is it my receding hairline? Have I let it go too long!?” “Um…nope. You have bleeding and hemorrhaging behind your eyes; your blood pressure is 236/140 and you need to get to an emergency room right now. ”
While speeding through Los Angeles traffic on the 101 freeway apparently with my head bleeding from the inside, I began calling the numbers in my speed dial including my family, my friends, and my ex-girlfriends. I’m think, “Why is no one answering the phone when I’m obviously dying?!!! I mean…I’ve got a brain tumor, cancer, internal bleeding, and God knows what else! Somebody answer a phone already!!”
Credit to the ER staff as I was through the doors with an IV in my arm in less than five minutes. The next thirty minutes are pretty much a blur. Doctors and nurses are running around everywhere. The whole place seems to be in what I would describe as organized chaos. I was being stuck, poked, and prodded, but nothing prepared me for what I heard next: “WE NEED A CATHETER FOR BED FIVE! A CATHETER FOR BED FIVE!” “But…but…but…I’m bed five,” I cried! “Sir,” the shockingly beautiful blond doctor said, “your kidneys are failing.”
Honestly, I didn’t even know what that meant. My kidneys are failing? What did that mean? How did they fail? Why did they fail? Are you sure? I asked myself those questions. I asked everyone around me those questions. I wanted answers, but there didn’t seem to be any.
One of the most frustrating parts of this was, as the hours passed waiting in the ER, no one I knew knew where I was. Cell phones don’t work there. I couldn’t get a land line. I was just lying there listening to all the overdosers and crazies screaming at the medical staff…machines beeping….bright neon lights buzzing. I think there is a very good possibility that when people have those near-death experiences and see the “bright light,” that it’s actually those huge mega-watt neons in the ER.
After five or so hours of waiting, I was taken to my home for the next eight days. Intensive care. It wasn’t real bad at first. The morphine had sapped my headaches. They took the catheter out. The nurses were really nice. I got to talk to my family and friends and explain everything to them. There are no televisions in the ICU, however, just you and the machines.
The days passed…my friends came by. My mom and brother flew in from Texas. The headaches subsided without painkillers. I had a lot of tests. Lots and lots of tests. The weirdest one was the MRI. Lying on a slab in a whirring, enclosed tube for 45 minutes at midnight is a really good way to be alone with your thoughts and ponder life. They came in and took blood 2-3 times a night. They injected mystery potions in my IV around the clock.
I was released from the hospital eight days later….still with no real answers. They had sent off my kidney biopsy to the lab and it would take several weeks for the results. I spent my time for the next few weeks researching kidney disease online. I researched dialysis. I researched kidney transplants. I did some soul searching and decided that, no matter my diagnosis, I would be as proactive as possible in my treatment.
13 days later
I stood in the hallway of the hospital staring at the printout the nurse handed me. I felt the blood rush from my face. There it was in black and white. I somehow thought if I read the words over and over, somehow the meaning of them would change. IGA Nephropathy. No cure. No real treatment. In layman’s terms, I needed a transplant or die. Basically, it’s a fairly rare genetic disease in which my body creates a protein, dumps it onto my kidneys, and ultimately destroys them. I obviously had known that this was one possible scenario, that a transplant could possibly be the only treatment that could save my life. I still hadn’t really believed it though. I felt there would be some simple treatment for whatever it was I had that would magically transport me back to the good health I had been blessed with all my life. Now everything was becoming all too real.
Soon I was called to a back office to meet with the doctors from UCLA. They told me what I already knew at that point, that I had to have a transplant. Despite my research, I ignorantly still equated ‘kidney transplant” to “radical medical procedure.” I was told the facts about my disease, about transplantation, about dialysis, and, of course, how my life would change.
Welcome to Dialysis
I had a catheter inserted in my chest to start dialysis the next week. The procedure itself wasn’t too bad. If you’re to be on dialysis permanently, then they will likely choose to put an access in your arm. They started me off three days a week, three hours at a time. After a few weeks, they moved me to four hours a week. People react differently to dialysis. I felt great on the four days a week I didn’t have dialysis, although I was pretty exhausted on the days I did.
I quickly learned that diet is very, very important. If you eat right and follow your doctor’s orders, you will feel much better than if you choose to eat and drink what you want. I actually got to the point where I didn’t mind going to dialysis. As with anything in life, you quickly adapt to change and to your environment. I simply viewed it as a part-time job. The dialysis nurses are really knowledgeable and helpful. In fact, I found them to be more compassionate and nurturing than your regular nurses. I attributed this to them choosing to specifically devote themselves to train and care for dialysis patients, and in turn, being more passionate about the group of patients they are working with. One word you’ll become very familiar with as a patient is “potassium.” Potassium is in virtually everything we eat. As a patient with kidney failure, it’s very important to eat foods low in potassium. A list of these foods is available from your doctor or dietitian.
In Search of a Kidney Donor
My search for a kidney was a little tougher than most. I was adopted at birth and have no family that I am genetically related to. This put me in the position of having a friend donate or rely on the national list to get a cadaver kidney. The science of modern-day medicine is fantastic. The potential donor has blood drawn, and a “cross-match” is done (meaning they mix your blood together). If the antigens in the two groups of blood don’t attack each other and the donor is in good physical condition, then depending on your blood type there is an excellent chance they are a potential match. It’s as simple as that! Some kidney patients, for whatever reason, are reluctant to undergo a transplant. I wanted a transplant just as quickly as possible. It is very important to strictly follow your doctor’s orders or you will not be a candidate for transplantation. If you don’t follow your diet, if you smoke, if you drink, don’t take your medications, or just fail to take care of yourself before the transplant, then it will rightly be assumed that you will fail to do so after the transplant. I was determined to do everything I was asked to do and then some. It is very important to be proactive in your treatment and work closely with your transplant coordinator. Your transplant coordinator has many different patients at different phases of their treatment. The pre-surgery tests and labs can take several weeks or many months, and your active participation will affect the time it takes directly. Stay in contact with your coordinator every week. If you have questions, don’t be afraid to ask. The coordinator is there to help you.
After a few months of dialysis and testing, it was determined that I could undergo a transplant. Now all I needed was a donor! The statistics these days are very, very encouraging when it comes to kidney transplants. Years of research have determined that there is absolutely no difference in quality of life or life expectancy for a kidney donor. In fact, studies have shown that people who donate a kidney actually live longer! There is just no discernable difference between living with one kidney or two. For someone like me who has always been reluctant to accept gifts or help from anyone for any reason, this was very important to me as I made the decision to allow a friend donate a kidney to me.
I was fortunate to have many friends get tested. I had staggered the tests so that the 3 friends who I thought really wanted to donate would come back first. I thought these three were the most passionate and really wanted to do it for their own reasons. I have amazing friends all around. I just really thought that my friends Phillip, Patrick, and Dustin were the most adamant and emotionally engaged and would be disappointed had they not been matches. They were all eligible donors, but it was determined that Phillip Palmer was the best match. Phillip is a close friend that I used to work with and had known for nearly ten years. He is the morning news anchor for KABC television in Los Angeles. He had actually been considering donating a kidney ever since he heard the story of professional basketball player Alonzo Mourning having a kidney transplant several years ago.
I decided to have the transplant at St. Vincent’s Medical Center in Los Angeles. After it was determined that Phillip was a match, I was to undergo the transplant in less than two weeks. I had never had surgery of any kind and wasn’t sure exactly what to expect. I learned that the actual surgery would take three to four hours and I would be hospitalized approximately one week. I met with my surgeon a few days before the transplant and we went over the procedure. Again, you’ve heard the statement that the only stupid questions are the ones that don’t get asked, and that is never more applicable than when you are discussing your treatment with a medical professional who is treating you. It doesn’t matter if it’s a nurse, your nephrologist, transplant coordinator, or your surgeon. If you have a question¯ask it! I even wrote down questions beforehand so I wouldn’t forget to ask.
I arrived at the hospital at about 5:00 a.m. on the day of the surgery. Phillip and I were side by side in the pre-operating room getting prepped for surgery. My surgeon was performing both ends of the operation, meaning he was both removing the kidney from Phillip’s body and transplanting it into mine. That meant that they would get started on Phillip a couple hours before they brought me in. The last thing I remember is them telling me they were administering a drug into my IV to help me relax.
The next thing I knew, I woke up, it was afternoon, and the surgery was over! I could feel an immediate difference in how I felt. I felt fantastic! I was told the surgery was a complete success and that both Phillip and I were doing fine. My creatinine level, which is used to measure how healthy your blood is and how well your kidney is functioning, was twice as healthy right after the surgery and continued to drop down to normal levels over the next few days. The particular kidney disease that I have can be present in your body for ten to fifteen years before being diagnosed. That meant it had been slowly sapping me of my health and energy during that time so gradually I didn’t even notice the change. Phillip left the hospital two days later, and I checked out after five days. I felt great!
It is very important to have a friend or family member stay with you if possible for at least a few weeks after the surgery. You are encouraged not to leave your house for the first six weeks after the surgery except for your doctor appointments. This is done because of the medications you will be taking. The drugs will keep your body from rejecting your new kidney, but they will also lower your immune system so you are more susceptible to other illnesses. It is helpful to have someone with you while you are adapting to life post-transplant. There are many medications to take at particular times. While the medications will gradually decrease, you will need to be driven to and from your appointments while you are healing. You may have as many as four appointments a week to see your doctor or have blood drawn so they can monitor your progress and adjust your medications as needed. They will watch you very closely and make sure everything goes smoothly!
Attitude is Everything
It is very, very important to keep a positive attitude throughout your treatment. I encountered many kidney patients at various stages who were constantly complaining and generally had a bad attitude towards their treatment. That is not productive and will only affect your health in a negative way. While this process is obviously not something I would choose to go through, I chose to focus on the positives. Every one of us has had or will have different obstacles to overcome. Transplantation should not be a scary word anymore. We need to be grateful that we live in the times we do and we have treatments available! I went from diagnosis to transplant in less than five months, and I can assure you that would not have been possible had I been lackadaisical or rebellious towards my treatment. Remember that you, the doctors, the nurses, the coordinators, everyone who works with you on your treatment are part of your team and the team can only be as successful as you let them be!
About the Author
Dale has toured the US and Canada as a comedian and had guest appearances in network shows such as JAG and Chicago Hope. He has also been seen on ABC’s soap Port Charles and been in multiple national commercials. Dale is also an Emmy winning producer, reporter and editor for his work in television news. Look for Dale on an upcoming episode of HBO’s True Blood. He is also producing a feature film slated to start production later this year. (www.holybuckmovie.com)
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