HLA & PRA
I suppose that this story begins at age 10, when I am diagnosed with Type I Diabetes mellitus. At the time, home blood glucose monitoring is unknown. There is urine sugar testing, which is notoriously inaccurate due to the time lag between the peak in blood sugar and the filtration of excess sugar by the kidneys, as well as the varying dilution of the urine sugar by volume of urine. An added inexactitude is casual measuring of the solution to be tested and the highly subjective matching of the reacted reagent with a color chart. I begin with one daily injection of mixed Regular and NPH insulin. Other than getting used to injecting myself, the disease does not make a great change in my day-to-day life.
The family visits my sister at college, and takes in a football game. It seems like an insignificant event, but the fact that I remember it 35 years later, lets me know that it somehow means more. Dad and I go to a concession stand to get soft drinks before the game starts. When my dad orders the drinks, he orders a diet drink for me. The woman behind the counter brings four big cups of dark, fizzy liquid. He wants her mark the cup that is the diet cola with a pen, and she does so. "You're sure that's the sugar-free one?" She replies, "Yes sir, I'm sure." Dad goes on, "I have to be absolutely sure…" The clerk answers, "I'm absolutely sure, sir. Taste it; you can tell."
Then comes the line that would shape a portion of my life. Dad says: "Well, I just need to be sure. We've got a diabetic over here."
I feel my cheeks get red, my forehead gets hot. Everyone in and around the place is staring at me. People that I will never know are invited into my life. I am no longer an individual in the first person; I am not even a "you" in the second person. I am a third person commodity, `a diabetic over here.' In six words, the disease becomes more important than I am. It is suddenly the definition of my entire life; anything that I might do, anything that I might accomplish would always come second to my status as ‘a diabetic’.
I decide—stupidly—that the fewer people who know I am diabetic, the better. This damned disease will not upstage me. From this day forward, I spend a significant portion of my adolescence in denial about my diabetes.
Home blood glucose monitoring becomes available; the glycosylated hemoglobin test, or A1C, isn't in wide use until 1979 or 1980, around the time I plan to finish college. I find myself growing up with a lot of the improvements in modern diabetes technology.
My interest in photography takes a serious turn when I get a job after school and on weekends with a commercial photographer in town. I learn a lot, I am damned good at it, and I consider making this my profession. In August, I go to college in Florida, studying art and commercial art. All seems right with the world. By the end of the school year, my eyes start to bother me; I can't focus well, and my photos start to reflect this un-sharp view of the world. Before the next school year, I have laser photocoagulation on both eyes. It stops the progression of the proliferative retinopathy, but my vision stabilizes; it will never improve.
The next year, my concentration changes to American Literature. I figure that even if I have to find books printed in 72-point type, I can still read and write.
I still carry on life in public as if I don't have diabetes, or at least as if diabetes has no effect on me. I find out how poorly kept my secret is; one day I am approached on campus by two people that I barely know, who were interested in acquiring a couple of syringes for some unspoken purpose. I tell them that I think that they are nuts to be shooting anything, and that insulin syringes have needles too short and too thin to hit a vein. We part company. They sneak into my dorm room and steal some anyway.
Still, I feel fairly healthy; I work, travel, and carry on a fairly normal life, except that I cannot ever stray too far from my insulin and syringes. In 1982, a routine doctor visit shows the first traces of proteinuria, although my creatinine level was still within a normal range. The proteinuria frightened me, because I saw failing kidneys as the beginning of the end; I am still as afraid of the word angiotensin as when I first learn it at twelve. The endocrinologist puts me on a low-protein diet, and things stabilize for a time.
I just barely pass the vision test to renew my driver's license. An ophthalmic surgeon tells me that I have a cataract on my right eye. I learn that it is not unusual for diabetics to develop cataracts on one eye and not the other. We schedule phacoemulsification surgery to remove the clouded lens, and replace it with a synthetic lens. It works: In three days my vision goes from 20/200 to 20/50, and later improves to 20/20.
November 9, 1995:
Creatinine reaches 5.0; potassium, sodium, phosphorus, calcium are still normal.
My creatinine level, having slowly risen over the past 14 years, now jumps to 6.9 (normal values being between 0.0 and 1.2). One of my doctors tells me—months before this moment—that when creatinine reaches about 6, time has come to see renal physicians and consider dialysis or transplant. With a serum creatinine of 6.9, I should take action immediately, but stubbornness— and fear— skews my judgment. I decide to delay seeing other doctors until I return from vacation.
My vacation for that year is already set to begin in about a week. I am determined to go, although the neuropathy and the restless-leg syndrome have become much worse. Sleeping is difficult; I walk in my sleep. I am bothered more frequently by hypoglycemic unawareness, and I am probably in the early stages of uremic poisoning.
I go on vacation rather than to the nephrologist. Having been to Las Vegas in summer on other occasions, I should remember the effect of the dry desert heat on your sodium and potassium levels (even without renal disease). The trick with desert heat is that you almost never feel sweaty; the air is so dry that perspiration evaporates before you are aware of it, thus you aren't aware of the amount of water that you lose. On another trip, too much time out in the desert sun sends me to the hospital, dehydrated, hyponatremic, and hyperkalemic.
I make the same mistake on this 1996 trip, but simply feel very tired. I order some food, eat, and go to bed.
Whether caused by hypoglycemia, neuropathy, electrolyte imbalance, uremia, or a combination of all four, at some point during the night—I recall nothing of this all, of course—I get up to walk. I probably am trying to "walk off" a pain in my legs. I open the balcony door, and once outside, tumble 40 feet to the parking lot below. Actually, I make a good landing: Two fractured tibias and a broken shoulder. My head lands in a flower bed, my body on the pavement; were my head and feet reversed, the story ends here.
I wake up about 36 hours later when someone pulls a respirator from my trachea. While I suggest that you avoid this rude awakening at all costs, surprisingly, I feel not horrible, thanks to morphine.
In the first few hours, the doctors consider the high creatinine numbers to be signs of physical trauma, and my very low hemoglobin and hematocrit to be signs of possible internal bleeding, They do an arteriogram of every inch of my body. When they find nothing, they follow up with a CT scan. So, added to diabetic nephropathy, and the shock of a 40-foot fall onto asphalt, there are two big doses of high-osmolarity contrast medium, which is notoriously nephrotoxic. Not having my medical history immediately at hand, these actions are prudent, but very hard on the kidneys. At first the hope is that the kidneys are just shocked from the fall, and will resume functioning within a few days or a week. To that end a temporary venous catheter is placed in the jugular vein and I am dialyzed twice weekly to relieve the load on the kidneys.
Of course, the Las Vegas police want to know what could motivate someone who just arrives in town on the same afternoon that he plummets to a parking lot. They theorize about gambling debts, loan sharks, and drug deals gone awry; they want to know if I have any enemies that might want me dead; they give me a receipt for the film that they take from my camera. They are puzzled because my door is bolted from the inside. The alcohol and drug screen of my blood shows nothing. They believe that I am not telling all that I know.
The time comes to return to North Carolina from Las Vegas, and while the trip is not fun, it is funny (at least in retrospect). The social worker at University Hospital in Vegas and American Airlines really deserve credit for coordinating the whole trip. I am hardly the average passenger; with two casts from hip to ankle and a shoulder in a sling, I am more like cranky freight. I must be placed sideways in a row of three seats, and it takes four burly baggage handlers—two standing in the row before me and two standing in the row behind—to maneuver me into place. Almost as an afterthought, as we taxi away from the gate, a flight attendant mentions, "by they way, if anything should happen to the flight, we will get everyone else off the plane, and then come back for you. If we can." I think to myself, "Right; that should work as long as you have four baggage handlers and a forklift really close to the crash site." But in all honesty, they do cater to me and they expend a lot of man-hours getting me on and off the planes, including a mad dash in a van across the Dallas tarmac—tires squealing as we dodge moving planes—in order to make my connecting flight.
But we make it back, and I begin a regular regimen of dialysis. I learn a new diet, a new—to me, at least—technology, new medications, and meet new physicians. I spend the large part of ten months dialyzing with various catheters—femoral, internal jugular, and implanted permacaths of varying designs, none of which works very well for me. My blood flow through the machine won't go much above 225-250 mL/min; a more acceptable rate would be in the range of 400-500 mL/min. Dialysis leaves me so weak that all I can do when I return from a treatment is lie in bed until the next morning. I have a four-day week now. The three dialysis days are lost to the treatment and the fatigue that follows.
The first cast comes off my left leg. I wait for the bone to finish healing while I use crutches, a walker and a cane for support. It soon becomes apparent that the bone has not set properly the first time, and will never support my full weight. More surgery is needed to re-break and re-set the tibia, this time with steel plates and pins for reinforcement. Back into a cast I go to let the bone heal again.
Hemodialysis is still causing me great weakness, and my blood chemistry is barely acceptable. We make the decision to change to peritoneal dialysis, which gives me a bit more freedom and better lab values. The only difficulty with peritoneal dialysis and my system is the presence of dextrose in the dialysate. I absorb calories from the dextrose at an alarming rate. One nephrologist estimates it to be a minimum of 1000 calories per day. Added to the food that I eat to nourish my body, these empty calories really add weight. I gain about 50 pounds in a year. (Please note that this doesn't happen to everyone on PD, it just depends on the interaction between the dextrose molecules and your peritoneal membrane.)
We begin the actual preparation for transplant listing. After an initial visit with the transplant team, I see other specialists who work up each specific system of my body.
I see a pulmonary specialist, who checks lung function (since I smoked for twenty years). Surprisingly, my lung capacity and elasticity are quite good, as is the oxygenation of my blood. My chest X-ray is clear. The tuberculin skin test is negative.
A few weeks later, I visit a cardiologist for a stress test. The results are passable, but the cardiologists feel that the test shows that there might be some stenosis in my left anterior descending coronary artery. An angiogram is ordered; there is some disagreement over whether or not to fix the narrowing with an angioplasty. The artery is reduced by about 55%; were it 65 - 70% there would be no question, but at this borderline blockage, some say yes, some say no. We decide that due to the stresses of the proposed double transplant surgery, we will open the artery. The angioplasty procedure only takes an hour or so, although I stay overnight in the hospital.
Aware of the LAD coronary artery stenosis, Dr. Gores is concerned about narrowing of the iliac arteries where he must attach the transplanted pancreas and kidney. Another angiogram is performed, this time showing where the lower aorta branches into the right and left iliac arteries. The right iliac artery is in a similar condition to the coronary, with a 45 - 50% blockage. Another angioplasty is done.
With luck, this gets my heart and lungs ready for the transplant surgery.
I still have my two lower wisdom teeth; they are not impacted, they have grown in fully. But since they are so far back in my mouth, and have no opposing tooth to work against, they are rather useless. They need to be removed before transplant, so I schedule a session with an oral surgeon. That done, my regular dentist writes the transplant team with a description of my general dental health and summarizes any work that needs to be done in the immediate future.
My nephrologist gives me a general physical, and reviews my dialysis records; he thinks that we are ready to go to the transplant committee.
All the while I am on PD, I continue the transplant work-up. In Charlotte, the transplant committee is comprised of all the transplant surgeons and medical specialists for all the solid organ transplants—heart, kidney, pancreas, liver, intestine. This committee meets weekly to consider who is ready to go on the waiting list and who is not. Everything is in line for me, except for the additional weight. The surgeon wants me to lose at least 30 pounds before going ahead with transplant listing. Three basic considerations influence his decision: the extra cardiac load of the additional weight, the technical complications the weight adds to the extensive surgery, and the tendency of patients on Prednisone to gain additional weight post-transplant.
We determine that the best way to remove the weight in a hurry was to eliminate the dextrose from the PD dialysate and return to HD for a period of time. Considering the problem I have getting good dialysis with catheters, we go ahead and implant an arteriovenous graft in my left forearm. After a month of development, the graft is ready to use. Hemodialysis is more pleasant, and my lab results are better this time. Whether this is due to a better access (and a better blood flow), or simply to the fact that I am not recovering from traumatic injuries is uncertain, but it is much easier on my system. I now feel that I will be able to stick it out through the waiting list.
After a year on HD, I am almost to my target weight, when I fall in the garage (carrying groceries), breaking my left tibia for the third time. Back into a cast for another 6 weeks I go. At this point I begin to feel as if the fates are just toying with me. Like Tantalus, with his water and fruit always just out of touch, I remain just beyond the reach of a transplant. I remind myself that I do not spend three years in pursuit of inclusion on the waiting list just to give up because of one more hurdle.
Late December, 1999:
Just before Christmas 1999, the cast comes off; I see the transplant team again on January 5. Later that week I receive a letter dated January 6 informing me of my inclusion on the waiting list.
I am again told to expect a six to nine month wait, perhaps a year, for the combined pancreas and kidney procedure, so I settle in to wait; I continue hemodialysis.
January 13, 2000:
The phone rings about 1:00 PM. It is the transplant coordinator; she says that there is an organ available. They are still doing blood work, and the surgeons will need to physically examine the organs before calling me in. She tells me to pack a bag, and not to eat anything after 6:00 PM. I should wait for another call. So I pack in ten minutes and wait.
About 4:00 PM the phone rings again: these are not the organs that they had hoped for. In the last few hours the donor's serum creatinine had risen from 0.6 to 1.8, indicating some physical trauma to the kidneys. So I sit back again to wait, grateful, at least, for a dry run through the timing of the alert, the final matching and the last minute testing. It takes longer than I expect. I imagine a phone call saying, "Get here in thirty minutes," but this is not quite the case.
January 14, 2000:
The transplant coordinator calls again around 11:00 AM, and tells me to get to the hospital. They have another pancreas-kidney donor available. There is still a chance that I could be sent home, that the crossmatch could reveal an antibody/antigen mismatch that would preclude transplantation or that physical examination of the organs might reveal damage, but that otherwise it looks like a good match. By the time I arrive at the hospital, the surgeon confirms to me that it is a very good match (6 of 6 HLA antigens match). Surgery is scheduled to begin at 9 that night.
I check into a room on the 10th floor; renal patients and transplants are here. First is a battery of questions: "when did you eat or drink last, what medicines or foods are you allergic to, have you or anyone in your family ever had...".
A nurse brings me two small bottles of some strange day-glo orange soap, and a stack of towels. She tells me to take a shower with the antibacterial soap, dry off, and fifteen minutes later, take a second shower and dry off with fresh towels. I can stand the two showers with that radioactive-looking soap, but should you use it every day, you could half-sole a shoe with your skin. Mean stuff, but it should zap any germs. I don one of the infamous hospital gowns, climb into bed and wait.
At 5:00 PM, I get an EKG; intravenous fluids start, along with antibiotics, and the first doses of immunosuppressants. At 8:00 that night, they roll me to surgery. Each person in the OR introduces himself or herself, explaining what is to happen during the next forty-five minutes before the anesthetic is given. Cables and tubes are attached and saline flows, drugs hang in pouches over my head, voices call out vital statistics. It's like very quiet, very calm, very organized chaos.
In what would be my last memory for the next 12 hours or so, a man introduces himself as Michael, an anesthesiologist; he tells me that I am now breathing pure oxygen as he places a mask over my nose and mouth. He then asks me what I smell, what I feel. I tell him that I smell rubber, like a tire store, that the oxygen feels cold and dry, like a winter morning. He asks if I am nervous; I reply that I am excited. He tells me to breathe deeply, that a drug is flowing, and I will just drift off in a few seconds.
January 14, 2000, 9:00 PM:
Since at this point I am under the influence of anesthesia, I cannot remember and describe the events of the next 10 hours. If, however, a description of the surgical technicalities would help to complete this picture of pancreas-kidney transplantation, we can enter the OR via a surgical textbook; I quote excerpts on a separate page. Follow me through the Surgery, and a link will bring you back to this point in my story.
January 15, 2000:
I wake up in a recovery room. It is about 10:00 AM; I look around and see that I am still attached to most of the monitors and IV's that I remember from the OR. A nurse asks me if I am nauseated or in pain. I say no, but that I feel thirsty. She tells me that I can have some ice chips in a while, but not quite yet. She gives me a swab to moisten my mouth. I drift in and out for a while.
Somewhere along the line I gain a Foley catheter, a nasogastric tube, and an arterial line. The arterial line is just a metal tube-thinner than a pencil lead-inserted into an artery in my wrist to monitor BP and blood gasses during surgery. It doesn't hurt at all, but for some reason, it bothers me psychologically a lot more than the 42 stainless steel staples that hold my belly together. The arterial line comes out a day later, thank goodness, leaving just a Band-Aid and a bruise.
I periodically wake up and see different people that I don't recognize; I am not sure if they are real, or are spirits, or are hallucinations. For the first time in the last busy 48 hours, I think of my donor's family and what they are facing right now. I can't handle that concern just yet, so I let sleep hide it from me.
I wake up next in ICU, still accompanied by the wires and plumbing and the monitors, but actually feeling alert for the first time in a number of hours. Dr. Gores comes by to tell me that everything looks promising, that the donor organ are in extraordinary condition, that, in fact, the kidney had started to function before they were even out of the OR—earlier than expected, but not unheard of. He tells me that I am still on a small drip of insulin—1 unit per hour—until the pancreas begins to secrete insulin; he tells me that this can occur any time from a day to a week after surgery. He projects that I will leave ICU the next day, and move back to my room. If I tolerate liquids tonight, they will begin solid food once I'm back to my room. My mother and sister come to see me for a few minutes, but before long I drift off to sleep again. I am awake and asleep for what seems like a few minutes at a time for the rest of the day. Every time I wake, there is someone from the transplant team or one of the ICU nurses with me.
I wake several times to see another green-clad staffer; he introduces himself by the same name as the anesthesiologist who put me under. He touches areas on my abdomen where the new organs should be and says, "Just making sure you're alright". Strange, but I blame it on the drugs in my bloodstream; between the morphine and the immunosuppressants, who knows what I will see and hear for some time to come.
January 16, 2000:
It is very early morning, four or five o'clock, I am not sure. We are in an elevator heading for the tenth floor, where renal and transplant patients are concentrated. We are back to my regular room. The nurses arrange the IVs so that I can slide (very slowly) from the gurney into my bed. One of the first visitors this morning is an EKG technician, who again attaches the little electrodes and produces a sheet of paper with my heart's inner working recorded on it. Either by unusual coincidence or by clever design, she informs me that she is a heart transplant patient, now in her third year. I ask her if she worries about being immunosuppressed and working in a hospital; she tells me that she is very careful, and, so far, very lucky. It is a small lift, though, and removes a tiny bit of my paranoia about the immunosuppressants.
The nurses bring me fruit juice and milk and water, and encourage me to drink as much as I feel comfortable having. Although I am still being hydrated with IV fluids, one of the requirements of a bladder drained pancreas transplant is constant replacement of the excess fluid lost from the exocrine secretions of the pancreas; the staff wants me to get used to drinking 2½-3 liters of liquid daily. It sounds simple, but to someone who has been on a fluid restricted diet for more than three years, it is a real challenge at first.
The whole team comes by on morning rounds; they bring the first reports of lab results that I have heard. I am very pleased with the numbers: BUN is 14 [5-25], creatinine is 1.1 [0.5-1.5], serum amylase is 30 [25-128], blood glucose is 114 [65-110], WBC is 6.5 [4.0-10.5]. My hemoglobin is low—9.7 [13.5-18.0]—but I am told that considering the blood loss from surgery, and the high doses of immunosuppressants, that the level is not too unusual and should recover in a day or two. There are dozens of other labs values, but these are the critical kidney and pancreas numbers that I am immediately concerned with. (The bracketed ranges are this hospital's normal ranges for transplant patients only.) My challenge for today is to get out of bed and walk the hallway for a bit.
Lunch is almost real food: soup, pudding, applesauce, and sherbet. At any rate, I now progress from a straw to a spoon. Perhaps tomorrow I'll get to use a fork. Here, the reason for the nasogastric tube shows itself. Major surgery on the abdomen usually `shocks' the organs, temporarily stopping peristalsis, the muscular movements that propel food through the digestive tract. With the GI tract in this `shocked' condition, the food must be given time to digest in the stomach, to give up some of its nutrients, then the nasogastric tube is connected to a suction device which removes the residue from the stomach. The tube is not painful, but it is bothersome trying to talk with it in place.
Now it is time for a walk. It takes me a few minutes to rise to a sitting position on the side of my bed. Pulling my robe around me, I have Mom on one side for support and a nurse trailing behind with a collection of IVs and monitors on a wheeled stand. I lean with one arm, and clasp my abdomen with the other. There isn't any severe pain; rather it is the appearance of the incision. It is a vertical line from just below my breastbone to several inches below my navel, held together with tiny surgical staples. It doesn't look so formidable when I recline, but standing up, I have visions of the staples popping out and the contents of my abdomen falling out on the floor. I know it is an absurd conceit, but nonetheless, it seems real to me. I am told that some immunosuppressant drugs can cause odd thoughts, even hallucinations; perhaps that's the reason for my thinking.
On our brief tour of the hall, I meet to the wife of another transplant recipient; this man had received a liver transplant at exactly the same time as my pancreas-kidney procedure. So while there is no confirmation, we assume that we share a donor. It has been very busy for the transplant teams here. In fact, a nurse tells me that there have been five transplants admitted to this floor in the last 48 hours (kidney, pancreas, pancreas-kidney, and liver transplants are here; heart transplants are on the cardiac floor).
The next few days become a routine of blood work, visits from several surgeons and nephrologists, nurses and technicians. Lab results are recorded on a big yellow chart on the wall opposite my bed. I assume that this is to get me in the habit of reading and recording these values, since after discharge, I will be keeping a running record of lab values at home. My diet becomes increasingly normal, and the nasogastric tube is removed now that a stethoscope can detect sounds of intestinal rumbling.
January 18, 2000:
They remove the last of the IVs. All my medications are now given in pill form. Again everyone cautions me to stay well hydrated; I say that I find drinking 2-3 liters of liquid daily a difficult task, but that I will try my best to meet this goal. I weigh 160 pounds, which is high for me, but considering that I had missed my last dialysis treatment to get to the hospital, and that I had been flooded with intravenous fluids ever since, plus whatever I could drink, it isn't unusual that I have that much fluid weight.
January 20, 2000:
It is almost one week since I got the phone call. The transplant coordinators and the surgeons consider discharging me. I expect my stay to last 10 days to 2 weeks, and I am a little surprised. They tell me that in their opinion, I can go home tomorrow morning for the weekend, if I am comfortable with the idea, and return Monday for outpatient blood work. I am hesitant, and elect to stay until Monday. I weigh 140 pounds today, having lost an extra twenty pounds of fluid weight in just two days with my new kidney working at capacity and with the IVs removed.
A nurse comes by to demonstrate how to change the collection bag for the Foley catheter, exchanging the large 3-liter bedside bag for a smaller one that could be strapped to your thigh. After a few minutes, we notice some liquid pooling on the floor. He checks the connections and determines that there must be a tiny leak in the smaller bag. We change it for a new one. He returns about an hour later, just to check on the new catheter collection bag. Again we see water on the floor and on my thigh. After further inspection, he determines that the urine is coming from my incision. A member of the surgical team comes to examine me. We determine that my tissues had been saturated with fluid when the original stitches were placed. When I dropped the twenty pounds of fluid weight in two days, the tissues were no longer edematous, distended; as the tissues shrank back to normal, the stitching became less tight, and a leak developed. It happens occasionally, they tell me, and is not a major concern. I return to surgery that night to replace the loose stitches. I am glad that I do not plan to go home quite yet.
January 25, 2000:
Today I go home, still with Foley catheter in place and with a stapled abdomen. I am glad to be back, though the weather is the worst that we have had in several winters; ice storms break trees, pull down power lines, block roads, close airports. We make it through the first few days and only spend one night without electricity (and heat). I go to the transplant center on the hospital campus for blood work three times each week. A transplant coordinator calls me with results and any needed medication changes.
The first problem that we run into is that of hydration and electrolytes. Prograf, a major immunosuppressant, causes potassium retention, especially at higher doses. My potassium is fairly high, my sodium is very low, and my rising and falling creatinine indicates that I am not consistently hydrated. My system is still not acclimated to large volumes of fluid; my stomach feels distended and I am somewhat nauseated until the fluid absorbs into the bloodstream. The beverage I need to stay hydrated and to keep my electrolytes balanced takes some experimentation. Orange juice is ruled out because of too much potassium; tomato juice has tons of sodium, which I do need, but also has far too much potassium. Plain water leaches away sodium. We end up with a choice of cranberry or apple juice and clear sodas (low potassium), alternating with soda water and canned broth (high sodium).
Still, within the first week at home I return to the hospital when my regular lab work shows my potassium level to be 7.0. This is frightening moment for me; a normal range for potassium is 3.0-5.5 mg/dl. Potassium is required for every muscle action in the body; the heart can stop if the level is either too low or too high. Another night in the hospital takes care of the elevated potassium, and while I am there, I get rid of the Foley catheter. Before I return home, there is an ultrasound scan of my bladder to insure that it empties completely without the catheter.
There is one more episode of dehydration with elevated potassium at the end of the month; it requires another night in hospital.
My lab schedule is reduced to twice weekly. My veins are grateful, and slowly they become easier to find. A checkup with Dr. Gores indicates continued good function in the transplanted organs. He reduces my Prednisone dosage slightly and plans to reduce it again later. The prednisone reduction makes really happy. I hope to regain some of my emotional composure. It is, to say the least, disconcerting to laugh and cry at the same time. Every emotion seems magnified, and not always in an appropriate direction. I definitely would wait a few months to adjust to the drugs before you watch a rerun of the last episode of M*A*S*H*. Today I also lose my 42 little staples, and—surprise—my incision stays together, quelling my paranoia of falling to pieces in the hospital corridor.
I celebrate my birthday with a quiet dinner at home. The fact is, I am still on rather high doses of anti-rejection drugs, and I don't feel like taking chances with restaurant cooking and my immunosuppressed system. I reconcile myself to giving up a few food items—oysters on the half-shell, lox, sushi, rare steak, prosciutto—in deference to safety. I still only eat raw vegetables when I wash them thoroughly myself. Perhaps my clean food, clean environment paranoia will diminish in time, but right now I figure better paranoid than hospitalized.
April 14, 2000:
My three-month benchmark passes without incident. My lab schedule drops to once a week (with occasional exceptions to recheck medication adjustments). My organ function remains stable, and I now see the nephrologists monthly. Medication levels still need periodic adjustment, and I expect that this will continue for some time.
The biggest change is in the way I feel. While I still have up days and down days, restful nights and sleepless nights, overall there is no comparison to the way I have felt for the last ten or fifteen years.
Someone asks me this week, "How does it feel to walk around with parts of someone else's body stitched up inside yours ?" Not the most demure question that I could imagine, but it is a germane question. I lie and say that I don't think about it; but I do. I think, "someone dies for me to receive this gift". I am not even comfortable with the word 'donation' because I still consider that the organs belong to someone else. They are presented to me for my custodianship. I am a caretaker to this legacy; I must comport myself in all ways as I think that my legator would do if he were here.
You do odd psychological somersaults over the guilt, remorse, unworthiness. But you go on.
July 10, 2000:
Four days from my six-month follow-up, and something is wrong. I have a minor pain in my abdomen the night before; it comes and goes. I try not to worry too much about it: my temperature is normal, urine output is about as usual, weight is steady. But the pain is still here today, and I call the doctor. Dr. Gores looks at last Thursday's labs, and palpates my abdomen, finding nothing out of the ordinary. He repeats the serum amylase test to compare the result with Thursday's result; he suspects graft pancreatitis, but the possibility of rejection exists.
My serum amylase level the previous Thursday is 59, in a normal range of 23-128. This afternoon it is 390. I return to the office to have a Foley catheter placed, insuring adequate drainage of the bladder. Thoroughly emptying the bladder is crucial to minimizing tissue damage in the bladder, ureters, urethra, and the pancreatic duct (due to bladder drainage of the pancreas' exocrine secretions). If the amylase level drops by tomorrow, graft pancreatitis is the presumptive diagnosis. If not, it could be a rejection episode—despite the fact that there is no fever, no elevated white count. Rejection would demand a biopsy, and a return to the hospital for very heavy doses of immunosuppressant drugs.
I try to sleep.
July 11, 2000:
This morning I discover that the condition affecting my pancreas is the lesser of two evils: pancreatitis, rather than acute rejection. Since there are no bacteria or other organisms involved in this "reflux pancreatitis," the treatment is to keep the pancreatic duct well drained of the potentially irritating exocrine chemicals, and to remain well hydrated. The Foley catheter will remain in place for two weeks, while the irritation subsides. Not to minimize pancreatitis, but I am relieved because the problem could have been far more serious.
July 14, 2000:
The six-month surgical follow-up goes well. My lab numbers look very good, with the exception of serum amylase, due to the ongoing pancreatitis; the amylase number is, however, much better than four days before, and should be back to normal by next week. BUN is 12, creatinine is 1.2, WBC is 5.1, HGb is 14.7, all the minerals and electrolytes are right in the center of the normal range. My total cholesterol is 125, but my HDL needs to be higher, at only 36.
My target level for Prograf is reduced from 12 - 15 ng/mL to a range of 8 - 12 ng/mL. The Prednisone dose is reduced from 10 mg/day to 7.5mg/day.
I find that the "big difference" that six-months makes is not really there. I realize that it is a milestone in transplantation to get just this far without a major rejection episode, but I expect something to feel different. I think of fireworks, trumpets, champagne corks, noisemakers, flashing neon, sirens. I find another good day, but no fireworks.
Just as I expect the first call from the transplant center to create a huge, wild-eyed emergency to get to the hospital (and it doesn't), I expect something dramatic to happen at six months. What does take place is the realization that I am still here, I feel better than I than ever since age 19, and I now can take a deep breath and proceed with the expectation that, with care, things will continue to go well for me.
July 24, 2000:
Returning momentarily to my diagnosis of graft pancreatitis, the Foley catheter came out today and the amylase levels are back to normal. So this episode is behind us, although no one can tell exactly what caused it at this time. We will wait, and hope that the condition doesn't recur.
I also registered for school today; I'm taking some additional computer certification courses this fall. Since I now plan to be here for a while, it couldn't hurt.
August 10, 2000:
It is one month to the day since my first attack of pancreatitis. The belly pain last night and the blood tests today confirm a recurrence. The treatment is the same as before. Dr. Gores says that if there is a third instance of pancreatitis in the short term, we will consider relocating the pancreas, converting from bladder-drainage to enteric-drainage. I hope to avoid this surgery, of course, but if it is needed, I am happy to get it out of the way early on.
August 15, 2000:
I received a gracious reply from my donor's family today. This event was such an emotional load of my chest that I can't begin to explain it. Just how do you go about thanking someone for saving your life, at the same time consoling them for the loss of their son? My tears flowed as my words spilled onto the pages I wrote to them today. There have been so many things that I have wanted to say to someone; thank God that today I have the proper people to say these things to. I am emotionally exhausted, but, at the same instant, lifted up in my heart.
September 21, 2000:
I could update more often, but I am scheduled for a stress test on 9/18/00, so I report to you today. The last bout with graft pancreatitis has cleared and a preventive is suggested. Dr. Bruce explains that long-term diabetics frequently have neurogenic bladder. Aside from being somewhat distended by routinely holding large volumes of urine, the neurological effects of diabetes can lead to a degree of insensitivity to the volume of urine in the bladder. With a bladder-drained pancreas graft it is important to keep the bladder as empty as possible so that the urine/exocrine secretion mixture does not back up into the pancreatic duct. Urination may require some conscious effort to be certain that the bladder is fully empty.
My drug dosages are adjusted again: the Prograf blood level range drops from 8 - 12 ng/ml down a slight bit to 6-10 ng/ml.
And finally the stress test showed equal function to the last one, with no muscle weakness or damage and quite good pumping capacity (the ejection fraction, in my case 75%).
December 19, 2000:
My life is continues to seem more and more "normal" to me. I have returned to school to update some computer training and certifications. As the holidays approach, I am very thankful for this renewed chance at a productive life. I hope that everyone gets along happily during the winter months, and I will soon give you a report on my one-year anniversary checkup.
January 14, 2001:
The one-year anniversary of my transplant surgery passes without significant event: No fireworks or brass bands. But also with no significant illnesses, infections, or rejection, so I am grateful for these things. I sit at home quietly, writing to friends. I continue to wonder how my donor Michael's family is handling this week in January.
I actually won't have the lab results, the drug dosage adjustments, and the results of the physical exam and the meetings with the transplant team until February 7, so I will report then.
February 7, 2001:
One of my goals (or hopes) for this first year is to avoid contracting any infections of significance. I will never know, but in all likelihood, I don't quite make it. The 14th passes, my labs are drawn on the 17th. All the lab values are very nearly perfect. On the 19th, the transplant coordinator calls from the center and says that there is a bacterial infection indicated by the urine culture. Because I am asymptomatic, no temperature, no elevated white count, neutrophils and lymphocytes in a good range, no pain, it is possible that it is a lab error; no one seems very upset, but the culture will be repeated Monday, January 22. On the 23rd, I receive confirmation that the infection is not an error, and I begin a week of Macrobid, a urinary tact specific antibiotic. Again the culture is scheduled to repeat on February 5th, after the antibiotic has cleared my system. On the 7th, I see the surgeons, and while everyone is quite pleased with the grafts' performance, the infection remains to be dealt with.
It is , luckily, not a drug resistant Staphylococcus aureus, rather a somewhat more benign Staphylococcus epidermidis, which is a virtual constant on the skin of human beings. A more powerful antibiotic could be used to eliminate the infection, but the more potent antibiotics are also more nephrotoxic. The doctors want to determine the source of the bug before treating again, so that it will not repeatedly recur. The theory is that there may be a small area of tissue inside the bladder, where all the staples and sutures for the ureteral and the pancreato-duodenal anastomoses are, and that it creates a concealed area where the bacterium is difficult to reach.
An anatomical assay is scheduled for the 13th, most likely a cystoscopic examination of the bladder and the connection of the grafts to the bladder. I don't look forward to this, but I will be more relaxed if we can determine the source of this infection.
For the time, my drug protocol remains unchanged.
All things considered it has been one of the better years that I can recall. There is still more to do, but at least this year I feel more like doing it.
February 14, 2001:
I see the urologist and a cystoscopic examination of the bladder shows three surgical staples that have not entirely healed over with tissue . Normally the tissues grow over the top of the staple, enclosing it; not uncommonly however, the tissue will heal beneath the staple , leaving the surface exposed. It can thus act as a repository for bacteria, and it can also be a collecting point for miniscule stones.
The staples will be removed during an outpatient procedure (using epidural anesthetic) on March 6.
March 6, 2001:
The cystoscopy done this morning, but the anesthesiologist decides that I can be released sooner using a short-acting general anesthetic for the brief procedure.
At home now, I feel well, very little discomfort, still slight traces of blood in my urine (which is expected at this point.) I start another course of Macrobid to see if the Staph epidermidis infection will clear, now that the exposed foreign material has been removed from the bladder.
I see Dr. Bruce, my nephrologist, tomorrow, and my urologist, next week for a follow up.
March 7, 2001:
Urine continues to look clear, I see my nephrologist, we discuss possible changes in Prednisone dosage, but he makes no promises.
March 8, 2001:
This morning my urine is suddenly dark with blood, not red, like fresh blood, but dark purple, like old, dried or else hemolyzed blood. I call the urologist and am reassured that this is normal: for the urine to clear and present blood for a week or so. So I try to relax a bit, and there is some clearing, and again darkening of the hematuria.
March 10, 2001:
Urine looking clear again, and am relieved that possibly things are healing.
March 12, 2001:
Urine is dark again, I call the urology office again, and am told that it is still normal. For some absurd reason, my procedure is compared to a Trans-Urethral Prostatecotmy, which simply makes no sense; other than using a cystoscope and using the meatus as a point of entry, these two have absolutely nothing in common.
Wednesday, March 14, 2001:
A follow-up visit today with the urologist: he assures me that all is normal, although he is somewhat baffled by the appearance of the urine, even under the microscope. It does not look like red blood cells, but rather like hemoglobin. I suggest that the protease from the pancreas graft could break down the cell membranes of red cells and release the iron binding content into the urine. No specific answer, one way or the other.
I am significantly bothered by the fact that a doctor can see an unexplained oddity, and not make any more than a cursory glance not a microscope do determine what is the cause. It is dismissed as a normal variation.
Another repeat visit is scheduled for two weeks.
March 15, 2001:
Blood clots begin to appear n the dark urine. Some suddenly occlude the urine flow, but after a degree of forcing, these pass, somewhat painfully, and I can empty my bladder. I call the urologist again, and am told by a nurse that unless I can't urinate at all, don't worry about it. By nightfall the urine begins to appear thick with dark blood. Routine monthly labs at the transplant center are virtually perfect, although HGb is down from 14.4 to 13.7.
March 16, 2001, 6:00 AM:
I wake, nauseous, dizzy, with occasionally blurred vision. I take my blood pressure and it reads 56/43. I try to rehydrate myself, adding as much sodium as I can to elevate my blood volume and blood pressure. I am slightly successful, and manage to raise the pressure to 100/60.
March 16, 2001, 8:30 AM:
Call the urologist's office again, and I am told that my blood pressure is the nephrologist's affair (even though it is obvious to me that it is a direct result of blood loss from the cystoscopic procedure. I call Dr. Bruce; he tells me to go to the ER immediately.
March 16, 2001, 3:00 PM:
Another urologist from the same office arrives and sets up a three-way catheter: saline floods into the bladder and washes the old blood away and out the other lumen of the catheter. (If you have never had a 24 gauge Foley catheter placed, try to avoid it. Not pleasant.) After about 30 minutes the outflow looks pink rather than dark and purplish. My HGb has fallen to 9.0. The urologist assures me that the flow will continue to clear of the "old blood". I argue that it cannot be "old blood" after 10 days, but I am dismissed out of hand. . Blood pressure still around 96/50. The urologist leaves.
March 16, 2001, 8:00 PM:
Dr. Bruce calls and orders additional blood tests. The HGb is now down to 6.6 and preparations are made to move me to ICU and start three units of blood. Some conversation transpires between physicians over the phone, but within one hour the urologist has (rather unhappily) returned to the hospital, and I am prepared for surgery. It seems that the evidence is finally overwhelming enough to make them consider going back and fixing what ever was not done properly the first time.
March 16, 2001, 10:00 PM:
Into surgery where a blood leak is cauterized again; I leave recovery at 3:00 AM, and feel significantly better after the blood infusion.
March 17, 2001:
I feel almost normal again, although my energy comes in short spans. My urine finally looks clear for an entire day. A third urologist comes by for a 30 second visit, looks at the urine n the catheter bag, say "Look's good," and leaves. The transplant and nephrology staff is more forthcoming with information. It is still an ordeal today, because it seems that no one from urology has written any medication orders, and this takes a while to straighten out so I get antibiotic coverage.
March 18, 2001:
A physician assistant from the urology group comes by and catches me up on all the lost or miscommunicated information of the past two weeks. I begin to recover some confidence. It is decided to withdraw the Continuous Bladder Irrigation (CBI, steady inflow of saline to help clear the bladder) and see if the urine remains clear without the added saline to was away blood.
About 6 PM the red color begins to return, by 11 PM the nurse restarts the CBI, because clots threaten to block the catheter.
March 19, 2001:
As a last resort before additional surgery, the physicians agree to try a dose of Amicar (aminocaproic acid), a substance that inhibits the destruction of fibrin, and thus makes the blood clot more solidly. Of course this also poses a risk to the renal vasculature, but if the dosage is adjusted carefully, this will be minimal. We should know if it works within 24-36 hours.
March 20, 2001:
This morning it appears that the Amicar might work. The urine is clear of blood again, the clearest it has been in 2 weeks now. The CBI is withdrawn as a test, and if the urine remains clear until tomorrow (which seems like an eternity), the Foley catheter will be removed, and we will then see how the bladder functions without benefit of the catheter.
Blood counts (erythrocytes, white count, platelets, hemoglobin) are all still low, but better than yesterday, so with luck they will stabilize. A dose of Epogen should help kick the bone marrow's production of red cells into high gear.
March 21, 2001:
The Foley catheter is removed in the morning. We watch and wait today to see if the urine remains clear as I move around a bit. All looks good and I am discharged by 3 PM.
March 22, 2001:
After one night in my own bed and a good morning, the hematuria returns in the afternoon. I return to the hospital in the evening, and it is decided that one more cystoscopic procedure will be done the next day.
March 23, 2001:
I spend most of this day fasting for anesthesia, since the procedure is scheduled for 5 PM.
March 24, 2001:
Hemoglobin drops to 8.6 before surgery, so I get one more unit of leukocyte-reduced, CMV-negative, packed red blood cells. I come through the surgery OK, but in significantly more pain that the previous attempts: I never had to ask for pain medication before, but this time I do ask for morphine during recovery. 2.5 mg helps, but does not stop the burning.
March 25, 2001:
I feel better in the morning, the urine looks clear, but then, it always look relatively clear on the first day; it is only later that the problem recurs. I will just have to wait and see. Someone from urology visits, someone I have never seen before, and who has not seen my chart, so this is a mutual waste of our time.
March 26, 2001:
Urine is clear, although the CBI is running, so everything is diluted. Everyone comes by to check on me and seems pleased. At 7 PM, the catheter outflow suddenly goes from pale yellow to bright scarlet.
March 27, 2001:
The urology team basically signs off on my case, saying that they have done all that they can do. I am back in the hands for the transplant team. They will meet tonight to discuss the options and report to me in the morning with a suggestion for action. More blood, more Amicar, since the number of blood cells is currently low, there is more fluid to dilute the extracellular potassium and magnesium, so these are supplemented.
March 29, 2001:
Surgery again today: The transplant surgeons plan to reopen the original abdominal incision above the bladder, reopen the bladder, and re-suture the anastomosis. This connection between the pancreas graft and the bladder is where the whole thing started, where the staples reside. They seem certain that, although this is a more dramatic procedure, that it will almost positively stop the bleeding.
March 30, 2001:
Dr. Eskind informs me that he found a number of other staples that were exposed by the repeated electrocautery, removed them and sutured the entire anastomosis. Urine has been clear since last night; blood values are slowly returning to normal; no significant infection, so I feel a new hope. If this continues for a few days, I can go home (and with luck, stay there for a significant a length of time).
April 2, 2001:
Finally, I made it home today without pain pills, but with antibiotics. Labs will be repeated in 2 and 5 days to readjust the medications, now that I am on my own schedule, eating my own food. I hope that this is all behind me for now; this has been a scary way to spend a month.
April 11, 2001:
I return to Dr. Eskind, he examines the healing of the external incision. The staples are removed and replaced with Steri-Strips for another week or so. He considers the last procedure a success.
October 13, 2001:
The hematuria that is a significant problem in March appears several times since then, but always resolves itself without treatment in less than 24 hours. This evening, the hematuria returns, but rather than growing less and vanishing in a matter of hours, it increases with no sign of slowing down at all. I begin to feel lightheaded, and while my blood pressure remains fairly stable, it is largely because of an increased fluid intake, and the dizziness apparently relates to lowered hemoglobin and consequently to less oxygen in the bloodstream and tissues.
So the hospital begins continuous bladder irrigation to allow aspiration of the coagulated blood and to prevent further clot formation. Remarkably by the next day, the hematuria has almost vanished.
I am still weak so I receive two units of CMV antibody negative, leukocyte reduced, red blood cells to raise my hematocrit and hemoglobin. From a low of less than 6.7, it returns quickly to 12.9.
I entered the hospital fully expecting to undergo the enteric conversion of my pancreas graft. Because of the quick, and by Monday, the total remission of the bleeding, a decision is made to allow my strength to rebuild and to prepare for the enteric conversion as an elective procedure rather than an emergency procedure.
So I repeat some of the original transplant evaluation: chest x-ray, physical exam, and cardiac stress test, all on preparation of tie coming surgery.
I'll report as soon as it is scheduled.
My second year transplant anniversary, and after all the consternation about the enteric conversion procedure last October, I can report no news. I saw Dr. Eskind this week and it is his opinion that I am currently just too stable to risk the procedure. While there are potential reasons for going ahead with the enteric conversion, it is not without some risk to graft function, and as long as the hematuria is not chronic, and there are no other urological complications, no infections, then he feels it is better to leave the pancreatoduodenal cystotomy without enteric revision.
In general, I feel very well, and have avoided colds and flu. My cardiac function is excellent (although I will admit that I need to be more strict with exercise). The lab values are encouraging: serum Creatinine 1.2 mg/dL, BUN 13 mg/dL, serum Amylase 78 U/L, Potassium 4.4 mmol/L, Sodium 133 mmol/L, Phosphorus 3.3 mg/L, Calcium 9.8 mg /L, serum Albumin 4.4 g/L, 2-hour post-prandial bG 94; HCT is marginally low at 33%.
If someone had offered the conversion surgery at this time last year I would have jumped at the chance, but today, I have too many things going on and I really am glad that we will not do the surgery at this time. It still may have to be an alternative someday, but I hope to continue as things are now.
January, 14, 2003:
I have not said anything in the past year, because my medical condition has been basally uneventful.
Dehydration is still a periodic battle, but I know more about how to sense and deal with it now than I did a while ago. Some GI distress keeps bothering me from time to time, and we have tinkered with drugs about as much as anyone dares to; still no real results, but I am OK.
The only real concern for me is the fact that my short term memory is still getting slowly worse. I guess I can cope with it by changing behavior: writing more notes to myself, etc. But it is not any fun.