Note: I am doing some editing of my Bulletins. The added material is in bold italic.
February 28, 2002
I received the call from Stephanie and told to get to UCLA with all deliberate speed. The first order of business was to page Laurentine and tell her that she needed to come home. She was attending a shower for our granddaughter who would be born in May.
It is quite a procedure to get prepared for surgery. The first step is to be admitted through the Emergency Room where they were waiting for my arrival. First there is a chest x-ray and then settling into a room. I was thoroughly bathed and shaved from neck to knee followed by a thick coat of betadine (iodine). Eventually, I was taken to the basement and after a brief pause with family in front of two large stainless steel doors (metallic, but not pearly!) I was transported to the operating room and transferred to the operating table and "hooked up." My pulse was 49 beats/minute. After a short absence the anesthesiologist said there would be no surgery. Later I learned that there was a spot on the donor lung and it was later found to be Valley Fever. I was stable and I could wait for a better lung.
March 8, 2003
Many of the details from February 28 were repeated. I was prepared in the room and waiting for transport to the operating room when my pulmonologist, Dr. David Ross, came in and said that he had bad news. There would be no surgery this time either. It was found that at the time of death of the donor, that food from the stomach had aspirated up into the lungs. Dr. Ross said that they could have gone through with the surgery but since I was stable and not threatened by imminent death, that they could wait for a better lung.
Reflection
Time is critical in bringing donor organ and recipient together as quickly as possible. It is only after the donor organ is received that the UCLA transplant team evaluates the situation and makes the decision to proceed. I appreciate their ethics and willingness to call off a surgery at the last moment. For the patient and spouse, the dry runs are helpful in assessing ones ability to quickly respond to the call to report to the Medical Center.
Many people asked about being disappointed at not getting surgery. The answer is a strong "no." A lung transplant is not a minor procedure and I wanted the best possible result. When Dr. Ross told me the second time that I would have to go home and do some more waiting I gave him "two thumbs up." I could wait longer for a better organ!
April 6, 2002
UCLA called at 12:20 p.m. to let me know that a lung was available for me. The right lung will go to a patient at Stanford and I will get the left lung. Surgery is tentatively scheduled for 5:00 p.m. I was prepared for surgery in a room I shared with the father of CNN morning news anchor D. Kagan. Eventually the surgery was rescheduled for 10:00 p.m. I later learned that Stanford was unable to use the right lung and that the organ came from a 49 year old.
April 7, 2002
The surgery finally started at 2:00 a.m. and lasted for 3 hours. I went to ICU about 6:00 a.m. and was extibated about noon the next day. I regained consciousness in the afternoon. I am UCLA lung transplant recipient number 147.
April 8, 2002
The nurse later told me that I looked like I had had surgery 4 days earlier. In mid morning my anesthesiologist saw me in my room and couldn't believe that I was there working a crossword puzzle with the help of my wife who wrote in the responses. I took a few steps in the room. About midnight I was transferred to room 405.
April 9, 2002
I started receiving phone calls from friends and took my first picture of the Medical staff for inclusion in the website. I did my first nice walk today and will do more in less than an hour.
April 10, 2002
My brother Reg, his wife Janette, and my mother came for a wonderful visit. In reaching for a tissue with my right hand I strained the wound and that has slowed me up because it is painful to get up and down, take deep breaths and cough. Later I would learn that surgery between ribs is the most painful surgery known because if puts such pressure on the nerves that pass along and under each rib. I understand that about 6 inches of my sixth rib was removed for surgery and not replaced. I sure hope no one wants to smite me under the fifth rib because there is an opening for them leading directly to the heart!
April 11, 2002
Still experiencing the pain. At 6:00 p.m. I'm on 0.5 L/min of oxygen and have a blood saturation of 94%. They plan to have me off of oxygen prior to my hospital release. Laurentine has moved into the apartment across the street from the Medical Center where we will be staying for 30 days. The address is as follows: Hilgard House, 927 Hilgard Ave., LA, CA 90024. (310) 208 3945.
I have been told than I can receive no flowers or plants. Sadly my home gardening days are also over. Fortunately, I will be able to have healthy visitors at any time. The next three months are very critical for finding the right balance of medications to support an immune system while preventing rejection. They are projecting that I will be discharged tomorrow beating their old record by 3 days!
April 12, 2002
I was a quiet but eventful day. I was off supplemental oxygen all day. My oxygen sats were not great, in the low 90% range and I only walked around the room. I think the oximeter was giving some erratic readings so I didn't push it. As the various medical visitors came by and I met the criteria for dismissal, being off oxygen, it became clearer and clearer that I was going to be discharged. I believe that there are several factors in my rapid recovery. I was well prepared for surgery. Dr. Ardehali did his work expertly. Apparently I was re-fused with some of my own blood but otherwise required no additional blood. Staffing of the medical center is light on the weekend. And, perhaps the biggest item, hospitals are a good place to pick up an organism that would be harmful to me. Dr. Ross, my pulmonologist has felt that lung transplants should be getting out more quickly, more on the order of time required for heart transplants, and I proved a good test case. We left UCLA about 4:00 p.m.
April 13, 2002
Mother, Happy Birthday. My morning medical stats were excellent. Blood oxygen stabilized between 92-94% with the pulse being in the mid 50s when recumbent, in the mid 60s when seated and around 90% when standing/walking. Bp and temperature normal.
April 14-16, 2002
A MAJOR STUMBLE
Early in the morning I could tell that things were not going well, but we were still focused on getting my GI tract functioning properly. Unlike most patients, I was taking food and water in and letting only water pass through my system. By mid afternoon we were due to contact my medical team and by then things were really bad. A "good" mistake was made in that we were put directly through to my pulmonologist. We couldn't get an adequate pulse for him to make decisions. Finally, Laurentine put the phone over to the pulse oximeter and he determined that I was experiencing atrial fibrillation. (I later learned that this was the first time that he had identified atrial fibrillation at a distance) We tried to get into the hospital but finally called 911. Since they were virtually across the street we almost immediately heard them on the way. The Marines Had Landed. What a team of focused individuals.
By the time we got to the emergency room Dr. Ross was also there, had reviewed the records of my discharge and knew exactly what to do. By midnight I was in normal rhythm. I'm still in the hospital for observation and to perfect the dosage of heart medication. An echo cardiogram revealed that I did NOT have a heart attack. We are still struggling to get my GI tract functional.
Success, the GI tract works. I later learned that I was headed for the "Go-lytely" experience that all who have had a colonoscopy will remember. BTW: a colonoscopy is no big deal, get out and get yours done.
During this last hospital visit I lost my appetite. Under the circumstances my body simply didn't want to take in anything headed for the GI tract. Finally we found the road to recovery--vanilla ice cream!
April 17, 2002
DISCHARGED and back in our Westwood Village apartment.
April 18, 2002
The day seems to be the beginning of pattern. I arose at 4:00 and had a good study of Psalm 1. Fosamax at 5:00, breakfast and a handful of pills at 6:00. Recorded vital signs (and again in the evening). I worked on the website and just couldn't get it to function properly. Checked my e-mail and down loaded the LA Times crossword puzzle and would continue to work on it throughout the day. 10:00 I had a nap followed by lunch. I received the home health care nurse at 1:30. Mid afternoon another pill. Laurentine went walking into Westwood Village and enjoys getting groceries at a Ralph's. She also enjoyed visiting the Thursday Street Market. I worked at refining a personal "business" card. Throughout mid day I really felt good but as the evening cool air from the Pacific came in I got a chill that took some time to clear. Dinner at 6:00, more pills, Evening was slow with a little "Singing in the Rain" seen on TV. I created a sheet for recording my daily vital signs and to check off pills as taken. I went to bed at 9:00 and concluded the day with a pill at 12:00. I received a number of phone calls throughout the day from friends.
April 19, 2002
It was a day of ups and downs. I had a poor nights sleep and was delirious at dawn. The role of spousal support cannot be overstated. Without Laurentine this morning would have been a disaster. Even though she was strongly emotional about what needed to be done she moved ahead in her gracious manner.
We called in to the transplant coordinator who invited us in so Dr. Ross could give me a once over prior to the weekend. After considering everything he dropped my Prednisone from 40 to 30 mg. and on Sunday we will go to 25 mg. On the good side it was quite a long walk from the parking structure to the office (UCLA has big buildings) and I did very well. Every visit to the clinic a chest x-ray is done. What an awesome sight! That huge left lung sitting parallel to the right lung which is about 2/3 the size.
The afternoon was uneventful and by evening my GI tract was functing. I was offered a sleeping pill to help me get some sleep. Sleeping is difficult because I can only get comfortable on my back, a position I have never used.
Greg and Ramona visited in the evening. It is a deeply appreciated expression of their love to fight the Friday afternoon LA traffic. In the next couple of weeks the Sohns and Allens will be sharing a granddaughter.
This was Greg's last day of school. Eight years in the School of Medicine at Loma Linda University and he takes away a PhD/MD. The school year is not over but Greg had thoughtfully saved his vacation time for the end to devote his full time to Ramona and their expected daughter.
I have posted a couple of hospital pictures at the bottom of the home page.
April 20, 2002
It is of course, Sunday April 21, but I am reflecting on yesterday. It was probably our best day yet. Both of the Saturdays that we have been here have been good days. For those of our who are Sabbatarians, that means that we have experience blessed Sabbaths. This morning I'm going to reflect on a couple of issues that will be very familiar to anyone who has spent a significant amount of time in the hospital and recuperating.
The combination of drugs with their actions and interactions is impressive. For example, for the past two nights I have taken the sleeping pill Sonata, however there are other effects. For example, getting up during the night when it becomes necessary is a problem. Very quickly I can get out of breathe because I judge that the body is slow to respond to the need for oxygen and then has to do some quick catch-up. I resolve this by getting up very slowly, moving slowly, and be taking oxygen as necessary both before getting up and getting back into bed. The pain killers all have problems, but we need them. Who wants to be so dead dry in the mouth and constipated. Somehow one finds the balance, probably about the time the course of drugs is ending!
Talk about issues with drugs. In one case we found that the pharmacist had given us pills at twice the dosage ordered, which meant that I was unknowingly taking twice the dose requested. In another case we didn't fully understand the dosage so we double checked our work by seeing how many pills were given to us for a 30 day supply. Well, I believe a mistake had been made. Fortunately, the item was Vitamin C and my background in nutrition has guided us. The mere logistics of some 60 pills/day taken at 6 different times is a problem. Oh, yes, prune juice is great for taking pills because it mask bad tastes and is a better lubricant that water. . .but you say, there are also side effects to prune juice. . .yes.
Laurentine has risen to the challenges she faces. She did get back to Riverside for one night while I was hospitalized, otherwise we are close together at all times. She has the difficulty of working with a guy who is very self-reliant and in control and not talking down to him in a parental tone of voice, even when it is necessary. Being able to afford an apartment here at UCLA has been a blessing, but it has kept friends at a distance and we are only now beginning to entertain thoughts about having friends drop in. I can hear every helicopter that comes into the Medical Center, and in every case I wonder if that is a organ being transported. Laurentine is accustomed to being alone virtually all of every day. She had some adjusting to do when I came home on disability. Here the issue is exacerbated, but I believe we are finding a solution in mismatching to some degree our nightly sleep and nap times. She is now comfortable going into Westwood Village for 30-45 minutes. She will get more personal time as both of us can independently get out of the house.
For the medical staff there are issues. I notice some of them calling me either Dr. Allen or Professor Allen. It is a nice show of respect that they consider me a colleague, but unnecessary. For my part I'm just a patient with my life being balanced by them. In the end we are only cooperating the the natural world that our Creator has given.
I've just added pictures of the UCLA Medical Center care givers.
The length of this entry is a clear indication of the state of my health. Watch out! They may get even longer!
April 21, 2002
Day 14. I was at 2:00 a.m. April 7, 2002 that surgery began.
Today has been a pretty good one. Now don't think that I'm out partying in Westwood Village. Laurentine and I got out for two walks. First to the end of the block to the west, and then to the end of the block to the east. I've told close friends that a benchmark for visitation will be three consecutive days with no surprises and at least maintaining my energy, health, and etc. My whole system seems to be coming into an equilibrium.
I'm told that I was on T.V. in the evening. It was a Sunday night repeat on KCET (Public Television) of the Huell Howser show. Unfortunately, it was taped the Tuesday prior to Thanksgiving when I was on oxygen, and hiding it out of sight of the camera, and 25 pounds heavier that I am today. Howser's featuring of the World Museum of Natural History, which is located on the Campus of La Sierra University, really increased attendance. The website for the WMNH is http://www.lasierra.edu/wmnh. President Geraty calls the Museum the Crown Jewels of the University, and he is literally correct!
April 22, 2002
Clinic day. First you go for your x-ray, then for a pulmonary function test, next to the doctor's office for vital signs, and a visit with the doctor. Following the consultation with the doctor many vials of blood were drawn. Today the nurse removed a couple of stitches.
The x-ray is amazing. I made a digital copy by placing a piece of typing paper behind the film, taped the film to a window, and then photographed it with a cheap handheld digital camera. Nonetheless the image is amazing. The transplant lung appears on the right and my natural lung on the left. Click the link and have a look for yourself.
Today was the second time that I had face-to-face contact with a lung transplant recipient, and there were about half a dozen of us. I was told that a lady was in the clinic 7 years after receiving her transplant. I had a nice visit with a lady who had received her transplant 4 years ago. The remainder of the group were recent transplants with several receiving their transplants during the December holidays.
April 23, 2002
The night wasn't great, but I felt good in the morning. While Laurentine was out for a walk I decided to bathe, shave, and dress. It was the first time since surgery that I had done it all on my own. I probably could have done it sooner, but the assistance was helpful. Today, I just wanted to do it.
In today's e-mail was a note from a good friend asking me to tell about how I got my appetite back following surgery. This individual had surgery some time ago and probably wants some tips. It is 16 days following surgery and I'm still not fully healed in the appetite department. Reflecting overall, it is interesting that prior to surgery I was on a strict very-low calorie diet. Now the answer seems to be small portions of highly concentrated foods. One needs to learn to adapt.
Laurentine purchased a bag with 12 small vanilla ice cream cups. I had noted that in the hospital the only thing that attracted me was a small cup of ice cream and that desire has continued. Ice cream is rich in calcium, fat, protein, sugar and minerals. Not at all bad in small quantities. Half a banana is good. This has generally led to a widening dietary. A block away is a large Ralph's supermarket. I keep hearing about it and the Deli Section. It's great for apartment living. Prior to surgery I took my tea with aspartame, now I use sugar. Before surgery I drank SoBe-Lean, now I drink regular SoBe drinks. Laurentine can obtain small quantities of gourmet salads, . . .which really appeal to the palate. For the first time, today I entered the store. I perused the Deli Section and sat at a table waiting for her. It was good to get out into general circulation.
April 24, 2002
The furniture in the apartment is less than ideal. It is low slung, deep in the seat, with backward sloping back. Great for slumber, but very difficult to get up from with the strain it puts on my surgical site. In Laurentine's trip home while I was in the hospital she brought back every pillow in the house, and that compensates. I'm reminded of what John Clough used to say, "When the students are complaining about the sprinklers getting water on the sidewalk, the food in the cafeteria must be pretty good."
April 25, 2002
The visit to the clinic today was routine. Blood was drawn and I'll get the results tomorrow. The PICC line was removed (which means all future blood draws will require the insertion of a needle). I was told that the left lung will continue to increase in size for perhaps as much as 3 months. I'll post another x-ray at some time in the future.
While in the clinic I got the opportunity to meet James Ford from Las Vegas. He had visited me when I was in the hospital for evaluation in early December. At that time he was celebrating his one year anniversary of his transplant. He is still looking great.
I asked about UCLA's success rate. When looking at raw statistics they can be harsh. I was told that during the past year one patient did not survive the surgery but that all of the other patients have survived and are doing well.
I've experienced quite a bit of pain today. Pursuing the twin goals of increased activity and decreased pain medication one can get out of balance. I noted that I brightened considerably as I met with the medical team and then again in late afternoon when Cyril Connelly came by for a visit. Oh yes, you should have seen tall and lanky Cyril and his effort to get up from one of the low-slung chairs. :)
April 26, 2002
A difficult day punctuated by a wonderful visit by Maynard Lowry. For a period of 24 hours I estimate that I slept a total of 9 times in blocks no greater than 90 minutes. I had a somewhat elevated blood pressure and normal temperature, but I felt washed out, something like a zombie must feel. I had no appetite and never left the apartment.
In the afternoon the transplant coordinator called and we discussed my situation and didn't come up with much. She was reporting on the blood chemistry from the day before and the good news is that I can decrease the daily dosage of two of my medications. Eventually we will level out at a stable long-term dosage of all medications.
I noted with her that I'm clearly getting better. Since the surgery it has been painful to get out of the bed or a chair and my body was repulsed by such moves. There was always the feeling that the great "gotcha" stab of pain would result. Now I note that while I notice the moves they are not accompanied by the strong stab in the back.
April 27,2002
The night has been conquered. Around midnight I had some stomach distress and the transplant coordinator suggested several medications until we hit on Benedryl that we had available. That did the trick and I slept for 5 hours after that. The next test will be to see if I can take my immunosuppresents.
I find that it is interesting that the three Saturdays (Sabbath, Shabbat) that we have been here have been the best of the surrounding days--truly a day of rest. My son Greg and his wife Ramona and my brother Reg and his wife Janette came over from Loma Linda for lunch and family visitation. It was great. Following a short nap Laurentine and I went out for a walk and easily outdistanced all previous walks. It really felt good and the gait was steady and not the shuffle of the early attempts at walking.
April 28, 2002
Two weeks post surgery and 24 Hours without heavy duty pain medication.
When I left the Loma University Medical Center following my lung biopsy last May they gave me 50 Darvocet pills to reduce postoperative pain. On rallies from the UCLA Medical Center following my lung transplant, they gave me 50 pills of Vicodin (Hydrocodon). I guess these are a50 pill operations. As the supply of Vicodin was coming to an end I decided to ease back on the medication. It didn't do much good until this weekend. Today I started with 2 tablets of extra strength Tylenol upon rising and would ultimately take the maximum dosage of 4 such doses. It worked. I hope tomorrow does as well because I've now consumed 48 of the 50 Vicodin pills.
I only used 1 of the Darvocet pills. My son, PhD/MD Loma Linda University, May, 2002, humbly reminds me that after surgery about all the physician can do is keep the patient comfortable while the body heals itself. With the biopsy using the Video Assisted Thoroscopy technique they were able to avoid damaging the nerves that run along the bottom of each rib. In the transplant they open a surgery pathway between two ribs by ratcheting them apart, and inevitably damage nerves. In this case they also removed 6 inches of the 6th rib and did not replace it! They have responded!
Laurentine felt comfortable getting out of the apartment today and spent 3.5 hours at the LA Times/UCLA Book Festival. I ventured out on my own, walking about as far as I did yesterday, but this time taking a more stressful walk around the block that involved a considerable change in elevation.
Today we examined a statement of hospital charges for my first trip to the hospital. It makes me appreciate all the more the generosity of the Loma Linda University Risk Management health care program.
April 29, 2002
I better understand now why in the early days of space travel it was necessary to carry the returned astronauts from the return vehicle on a litter. It is going to take a while for me to regain my stamina. On Sunday I walked around the block and I believe my muscles were still glycogen deficient today. Laurentine and I walked a couple of blocks to an Art Supply/Stationery store. I was exhausted and had to ask her to go get the car to take me home.
Another day without narcotics!
April 30, 2002
With this note I will halt the Daily Bulletin in favor of occasional notes as significant events occur.
Laurentine and I expect to be returning to Riverside about the 10th of May. I could have been home immediately after surgery, but due to the frequency of medical appointments and the rigors of travel through the Los Angeles basin, we opted to take an apartment for 30 days here in Westwood Village so I could get immediate care if problems arose. It has proven to be a good decision.
I understand that beyond getting back my physical strength, the coming weeks will be a slow reentering into society. I am very susceptible to infectious diseases with my immune system shut down. With the passage of time I'll have more and more contact and eventually I'll be rather normal and freely get out in society. Nonetheless, I'll probably always be cautious about being in places where there are large numbers of people in a crowded situation.
May 6, 2002
The first anniversary of my lung biopsy at the Loma Linda University Medical Center, Dr. Erdman.
Building a new life. As I begin to get out more and more it's not back to the old ways but building a new life. Consider eating in restaurants. Now, at least for many months, I need to avoid crowds of people where I could be exposed to infectious diseases that would be hard for my weakened immune system to fight. Hospitals are off limits! Here in California the restaurants must be a nonsmoking environment. This has lead many restaurants to build outdoor patios where smoking is allowed. Fortunately here in Westwood Village there are numerous restaurants with sidewalk eating areas, and even better yet is the California Pizza Kitchen that keeps it a non-smoking environment.
I exercising more and more each day. My progress is slower than I expected. I've been up to 1.5-2 miles in a day, but due to a poor night of sleep I wasn't able to extend my previous distance record today. Don't be fooled by these distances because here in Westwood Village there are many benches for welcome rests. I also seek out stores featuring chairs for sale!
May 7, 2000
The one month anniversary of my lung transplant at the UCLA Medical Center, Dr. Abbas Ardehali, surgeon.
May 10, 2002
Home at last. As stated above we could had been home a week after surgery but with the distance from Riverside to UCLA and the problems associated with the commute we chose to stay in Westwood Village for a month. We are happy to see non-infectious friends for brief visits.
May 15, 2002
I have just added another x-ray to accompany the previous one. It was done in September, 2001 so represents the period prior to surgery.
May 21, 2002
Six weeks following surgery.
As I look back over my bulletins I rejoice that there was a time when I did not need pain killers. In the past week I have been taking as many as 4 Darvocets per day. I have also had many a poor nights sleep and have been very low in energy which has prevented significant exercise. Even a little exercise leaves me with sore muscles the following day! Strange for a guy who has been very active in life.
I looked forward my visit to the clinic yesterday. I now have the results. The bronchoscopy shows no signs of rejection and I'm considering adding the composite picture to the website. The blood work has led to a modification of my daily regimen of pills. The Prograff is being lowered and the Synthroid significantly increased, from 0.112 mcg/day to 0.15 mcg/day, that should really boost my energy level.
Today I drove my car for the first time since surgery. I drove to the campus of La Sierra University, which is about a mile from home, and picked up mail that accumulates there for me.
This evening my daughter Barbara and her family arrived from Caldwell, ID, to attend my son's graduation from medical school next Sunday. I was asleep in the middle of the night when they came and see the evidence of their presence. I can't wait to see my grandsons Caleb and Reuben (see their pictures in the family support group pictures elsewhere in this website). Which reminds me that on May 13 Ramona delivered an 8 lb 13 oz baby that she and Greg have named Lilia Joelle Mi-Song Allen. Ramona has a doctorate in piano performance and has given Lilia one name referencing her Korean heritage, Mi-Song, literally meaning "my song." In the family pictures I have added a picture of Laurentine holding this new miracle of life.
One of the joys of being home is to see the garden. On the other hand my energy has been so low that it has been difficult getting out. We are now blessed with beets, zucchini and onions in abundance. Crooked neck squash, peppers, and tomatoes are coming on fast.
May 29, 2002
What a difference a few days and a change of medication makes. The increase in Synthroid to overcome my hypothyroidism must be the explanation for my increased level of energy. Today, for example, I watered the vegetables, pruned and watered some of the roses, went to the Galleria at Tyler for lunch and a walking loop of the mall and then went to two grocery stores.
I guess I didn't mention it yet, but while picking produce for my daughters family as they were leaving on Monday, I picked my first small tomato of the season (Early Girl). A bumper crop is following with all of the plants doing very well.
My increase in energy came just in time. On Friday evening Ramona and I were honored by Greg when he invited us to be the ones how slipped the MD hood over his neck during the hooding ceremony. I also had the energy to attend the Commencement of Sunday and go to a family celebration honoring Greg following the service.
My driving today was the longest since surgery and included driving between two exits on the freeway. The driving went very well and I have a longer trip planned for tomorrow.
I should also add words of appreciation for care givers. Laurentine has been wonderful in supporting me. Now, when Barbara's family left on Monday, Laurentine's weariness really set in. Since she revives by being alone (an introvert) my role is to be active and increasing my energy and stamina while giving her the solitude that is necessary to bring her back. I'm certain that may care givers will fully understand what I'm only briefly mentioning.
I enter a formal pulmonary rehabilitation program at LLU next Monday.
June 6, 2002
Yesterday I had a good day which set the stage for today. I was out on my own for 2.5 hours. I went to the post office, had lunch at a Chinese restaurant, and went to the Mall where I saw friends, walked and purchased a new belt for my diminished waist. Since the Mall is only about 4 miles from home the driving was comfortable.
Today I went to the Loma Linda University Medical Center for testing as part of the pulmonary rehabilitation program. I drove the 22 freeway miles to Loma Linda and all went well. The testing involved and EKG before, during, and after the treadmill. I stayed on the treadmill for 6 minutes with a maximum heart rate of 114. My blood pressure was typically around 120/80. I was pleased that the oximeter read 97% and never went below 92%!
The last couple of nights my sleeping has been quite good and the pain, while still significant, is being controlled with a light dosage of vicodin.
June 11, 2002
This week I went back to UCLA for routine testing and I am deep into pulmonary rehabilitation at LLU.
The drive to UCLA is always an adventure. On our last trip we had left at 6:30 a.m. and it took over three hours to get to UCLA! One problem that day was a light rain, but we didn't see any accidents that were causing the delay. On Monday we left at 5:00 a.m. and got to UCLA in one hour and 15 minutes! That is just about the minimum time necessary when there is zero traffic. I drove home from UCLA and the return trip in the early afternoon was two hours. I enjoyed driving.
The blood work is now back from UCLA and the only change in medications is lower the prednisone from 15 mg/day to 10 mg/day. Anyone who has ever taken prednisone will know that a reduction in dosage is always welcome. I am posting the latest x-ray. My next appointment is set for one month from now and in two months I will have another bronchoscopy.
While in the clinic I was able to get reacquainted with a lady who had a single lung transplant at Christmas time last year. She reported that she had never needed to take any pain pills! That was my experience with the video assisted thoroscopy (VAT), but not this time. I'm typically taking 3 vicodin/day (5/500).
Today I drove the 22 miles to LLU and back and did my pulmonary rehab. This was my first introduction to the exercise program. In addition to educational material and a review of breathing techniques, they taught me how to hook up the three lead telemetry. I walked slowly, 1.8 mph, on the treadmill for 26 minutes and pushed the hand bars of an exercycle at 22 rpm for 5 minutes. My heart did well beating in the mid 90s and the oxygen saturation never dropped below 92%. I understand that from here it is a matter of lengthening the time and then increasing the intensity.
Today Laurentine and I celebrated our 39th anniversary. We have never been closer than now with my illness testing us to the maximum.
June 27, 2002
It is hard to believe it has been so long since I posted my last update! It is a sign that I'm busy with activities and returning to normal.
Today I walked for 55 minutes at the same rate of 1.8 mph (this includes a 5 minute warm up and a 5 minute cool down at 1.2 mph). During the warm up period I saw blood oxygen saturation as high as 95%. I never fell below 92%. I also did my upper body exercise for 11 minutes at 33 rpm.
Returning to normal means many things. A week ago I attended the game between the Dodgers and Toronto with Greg, Ramona, Lilia. Then on Sunday Laurentine and I traveled to Solvang and stayed for 2 nights. I drove over to Solvang which is about 170 miles.
During this period I have met, at a distance, two new IPF individuals who are facing surgery. One is seeing a pulmonologist is the same group at LLU as I am in and is going into UCLA to talk with them about the prospects of a transplant. The other man is from Carmel and already has been evaluated. At rehab. today I met a man (who is doing very well) who had a heart transplant 5 years ago (that is encouraging).
Finally, as a result of a comment by me Greg has acted to get the Huff n Puff (forum) website reactivated. It got thrown off of Tripod and users thought that it was lost forever. However, Greg stepped up and said he had space on a server that he had and could host the group. The reception by users to finding the site up has been very gratifying. The website is http://www.huff-n-puff.net/newforum
July 10, 2002
A major benchmark has passed--three months/13 weeks--and I have now had my most recent tests, and visits to both my UCLA and LL pulmonologists. I am now cleared to travel beyond reach of my southern California medical centers and to fly in airplanes. When my pul. rehab. gets further along I will be able to return to work. I was told that I could reduce the use of a mask but continue to frequently wash my hands as contact through my hands is the way I'm most likely to acquire a disease.
I'm now off of Procainamide which was prescribed for three months for my atrial fibrillation. My response will be followed while I am exercising on the treadmill with the three-lead telemetry. I have now dropped the Albuterol (as needed), the iron supplement, Mycelex (as needed) and I will be trying ibuprofen as I still have pain but am off of vicodin. I believe that leaves me with about 50 tablets per day for my various problems.
Yesterday I comfortably did 60 minutes on the treadmill at 1.8 miles/hr. and did 15 minutes of upper body work at 34 revolutions/min. I can really tell that the pul. Rehab activity is increasing my stamina and strength. It is now an uncommon experience when I have to think about breathing! Think about that!
July 30, 2002
I returned to work yesterday. Those of you who have been following the homepage will note that the color of the Bulletins link has been changing colors, starting with red and going through the spectrum until I now am using ultraviolet.
Last week was a tough one, my friend Chaim Potok died. Since I am his webmaster I have been receiving many e-mailed condolences which are being sent on to Adena Potok. The obituaries and essays remembering this great writer have been impressive.
On Sunday I attended the annual UCLA picnic for heart and lung transplants. The picnic is dominated by heart transplants since they have done nearly 1300 while only 140 lung transplants have been done. I was the most recent lung transplant that I met ( I met a heart transplant that was done in May!). There must have been about 20 lung transplants present. I was very pleased to meet UCLA's first lung transplant and 12 year survivor.
My rehab. is going well. Today I easily did 60 minutes on the treadmill at 2.2 mph and will increase the speed tomorrow. I did 15 minutes of upper body work at 40+ resolutions/min.
Sign of the Times. My office is on the fifth floor of our building and on the way in I stopped on the third floor to see a colleague. Finishing there I left for the fourth floor and without any hesitation walked up the steps. Finishing my visit on the fourth floor I again took the stairwell to the fifth floor. I had lunch at a mall and having time on my hands I walked a complete loop of the mall just to kill time.
I'm still not jumping through hoops or running the four-minute miles, but every day I feel stronger.
August 15, 2002
On Monday I went into UCLA for my regular appointment and in the afternoon I had a bronchoscopy. The results of the PFT are good. FEV1 = 78% which exceeded the value that I had prior to my lung biopsy in May 2001. That is not bad when one has one good lung and one bad one. The x-rays looked about the same as usual to the unaided eye except for a liver-shaped object below the left lung. It turned out to be an air pocket in the top of my stomach! During the bronchoscopy several biopsies were done. For several days I coughed up small amounts of phlegm which indicated that they didn't use a Band-Aid after taking the sample! No evidence of rejection was found.
Returning to work has created some problems in that working seems to be aggravating the wound area creating pain in the left shoulder blade area. It is disappointing to seem to be dropping back a little but this too will heal with time.
This week I was able to walk the treadmill at 2.5 mph. I looking forward to the end of rehab. Which will be next week.
The heat and smog are having a negative effect and even putting in a light day of work leaves me very tired.
August 28, 2002
Three benchmarks are noted. Last night was the first time in about a year that I spent a night alne. I attended a Department retreat in Indian Wells, CA, and went by myself. In the evening the group had dinner in the restaurant at the top of the Palm Springs Tramway, elevation 8,500 feet. In the morning we leave for Idaho, our first trip out of Southern California since my surgery.
September 13, 2002
The trip to Idaho was uneventful as far as the lungs were concerned. Very eventful if you include seeing our daughters family and two grandsons. On Monday I leave for a 4 day business trip in which I will be traveling alone.
I am experiencing more pain that I want in the left rib region. I keep trying to find the activities and positions that initiate the pain--so I can avoid them! Working definitely exacerbates the condition.
September 20, 2002
The business trip was uneventful and very productive. It was as productive a week at work as I have ever had since I started working for the Loma Linda University School of Dentistry!
On Thursday morning I had my scheduled visit at UCLA to see my pulmonologist. It was the first time that I had ever been there alone and went to the office on the way home from my business trip (Laurentine has always accompanied me in the past). My lungs look good on the x-ray and my FVC and FEV1 were both around 80% which is well beyond anything anticipated. A week earlier my Loma Linda University pulmonologist stood with a slack jaw as he read my spirometry. He confessed that he had doubts about me surviving long enough to get a lung transplant.
I told Dr. Ross, my UCLA pulmonologist that I almost went to play racquetball on Sunday and asked if I had his permission to return to the court. He had a quizzical grin on his face and said, "didn't you play before?" I am simply cleared to do anything that I feel like doing! Yes, even flying in a commercial air plane. I left my letter for the donor family. Writing the letter was very difficult because I wanted to express my feelings and gratitude for their gift.
An odd benchmark: I can blow my nose! I mean really blast it out. I have realized in recent weeks that I was very comfortable blowing my nose when a little fluid appeared. Furthermore, I can really blast it out. Until then my lung capacity was compromised, my physical conditioning was poor, and pain in my ribs exacerbated by a hard blow. What a strange benchmark of recovery.
October 6, 2002
I went to the racquetball court and met some old friends. We even played a few gentle points together!
October 7, 2002
Six months and going strong.
October 9, 2002
I had a most unusual birthday present (age 63). I have been giving advise and counsel to a man from Monterey, CA, who was considering a lung transplant at UCLA. Today he called from a hotel telling me that he had had a double lung transplant and a coronary bypass on Sept. 30 and was discharged from the hospital after 10 days. The joy I felt at hearing his strong voice and enthusiasm is difficult to describe.
November 3, 2002
I have just returned from a trip to the northwest. I flew to Portland on Southwest Airlines and from there visited dentists in Salem, Portland, Vancouver (WA), Tacoma, Port Angeles, Auburn, Tri-cities, Walla Walla and points in between. I worked from the moment I woke up in the morning (usually 5:00 a.m.) to about 10:00 p.m. at night. Fortunately this type of work is good for me. Visiting with dentists charges me up and the driving in the car doesn't create any pain. On Friday afternoon I drove to Caldwell, ID and spent a day with my daughter and her family (Wayne and two grandsons, Caleb and Reuben). Sunday morning I arose at 4:00 a.m., California time, and drove 6 hours to Portland to turn in the rental car and few home. We experienced a 2 hour delay when there was a security breach while we were in San Jose so it made a long day. I came home tired and satisfied, with no evidence of picking up any harmful germs.
On the airplane flight between San Jose and Ontario I sat next to a couple from here in Riverside.
When the airplane door was closed I explained why I was putting on my mask, which naturally led to comments on my surgery. The lady then said, "my daughter's mother-in-law had a lung transplant three years ago." Amazing.
November 28, 2002
Thanksgiving Day
The day and the events evoke many memories. It was Thanksgiving Day a year ago that our family gathered with the thought in the minds of many that this might be the last Thanksgiving that I would be present. This has been a memorable year indeed. This year for Thanksgiving dinner my mother was able to be present because she moved to Loma Linda in January and Lilia Joelle Mi-Song Allen, who was born in May, was also present.
I can't forget the past because it was two days before Thanksgiving that I did a video tape with Huell Howser giving him a tour of the World Museum of Natural History for his Visiting with Huell Howser show for public television. I hid my E-bottle of oxygen out of sight and immediately returned to it when off camera. A picture of me showing all of the effects of prednisone is in the family section of this website. Oh, what a difference a year makes.
On Monday I had my most recent visit to UCLA for a checkup and bronchoscopy. The report is good and no changes were made in my medications. Generally speaking my pulmonary function tests indicate about 75-80% of predicted function.
I'm preparing my Christmas card list, and it is long this year. So many people have been kind and supportive of me during this period. . .not to mention all of the members of the Huff n Puff forum who are so very supportive.
I still have some problems. I'm very comfortable visiting the School of Dentistry Alumni while doing a lot of driving. I'm not comfortable doing office work. The best position for me while on the computer, as I am now, is in a recliner chair with the back tilted a little and with my feet elevated. Resting in a comfortable chair or in a car with the seat tilted back brings relief. Too much upper body activity and the pain in the left rib cage brings me to a halt. I wish that pain would go away and it is decreasing. I don't take a Vicodin more than about once a week (one pill) and then I'm disgusted because I don't think it really helps. I wish I had more energy in the evening after a day of work, but that too is improving. Every Sunday it seems like I can do more around the house and yard.
There is a lot for which to be thankful.
December 25, 2002
In my Christmas cards this year I placed an insert. The insert is a bit like the letters that others include with their cards that provide an account of the past year. My insert shares some of these qualities but is my own unique presentation. I've copied it below so you can read it for yourself.
Joy
breathing deep drafts of air,*
to complement two grandsons (Barbara/Wayne),
and being asked to share in his hooding,
who finished his course this year,
when forced to embrace mortality,
from LLUSD and Risk Management,
revealing a host of caring family and friends,
with new friends sharing pulmonary fibrosis,
with family from near and far,
exploring Solvang and Santa Barbara,
and expecting more than a good new year.
*www.radmedicine/ballen/lung
**www.radmedicine.com/photos/Lilia
***www.huff-n-puff.net/newforum
February 21, 2003
Lest anyone think that the lack of posts suggests a problem, I say au contrare (excuse my French). I'm doing great, that is the reason for the lack of posts! This week was spent traveling in Arizona visiting LLU dentists with mid-week in greater Phoenix and returning home via Yuma. I was truly impressed with how huge greater Phoenix has become. The week after next I'll be in New Mexico.
March 8, 2003
I create my own work schedule. During the winter I stay close to home or in southern states. I spent this week in New Mexico. Well. . .while New Mexico may be a southern state, it is also the southern end of the Rocky Mountains. My trip involved flying to Albuquerque (5,300 ft.) and driving to Farmington/Aztec (5,300 ft.) with 7,000 foot passes in between. It was a good test of my current lung situation--transplant left lung and diseased right lung.
I noticed that I got SOB fairly easily upon exertion. Hauling my luggage (on rollers) through the airport required me to take it just a little slower. Overall I would judge that I was a bit closer to the edge and it required me to take it a little slower. Inside the airplane I easily threw my carry-on bags into the overhead compartment. No one had a clue that I had a problem.
Is my situation the result of age, weight, lung problems, or what ever? Yes, each of these are probably contributing factors. Several days of acclimation to the altitude would be helpful as well.
A big blessing for the week was a wet overnight snow storm when I was in Farmington. I visited a couple in their home on a mesa above Aztec. As I was leaving the man I was visiting pointed out a soaring eagle. . .a bald eagle. What a sight.
Isn't life great!
April 7, 2003
It is actually a couple of weeks after my anniversary but for some time now I have been contemplating posting what life is like a year after the transplant.
On April 7 I had my (first) annual visit with Dr. David Ross at UCLA. In preparation for the visit I had the following done the week before: blood chemistry, chest x-ray, CT scan, and Pulmonary Function Tests. Even before I got to the office I received a call advising me to reduce my Prograff to 50% of what I've been taking (I consider this to be good news). Subsequent testing indicates that the reduced dosage of Prograff is just right. The key pulmonary function outcomes are as follows: FVC 3.62 (83%), FEV1 86%, FEV3 3.43.
The drugs that I'm taking can enlarge a man's prostate so I'm seeing a urologist to get this problem under control. Since the problem causes frequent urination it wakes me up several times each night (bad) but has me frequently washing my hands during the day (good). Frequently washingof ones hands during the day is probably one of the best things a person with an organ transplant can do to avoid infectious diseases.
As noted above I still travel for my work. During the past two weeks I worked in northern California and southern Oregon spending my first weekend alone and away from family for a very long time.
There still are medical challenges. I still experience pain in the area of the surgery. I have only taken one Vicodin in the past 6 months and that was only to head off a potential problem on Christmas Day (unnecessary). I control the pain by sitting in the car with the back tilted backward or in a lounge chair with my feet up. Resting this way for 5 minutes usually allows the pain (spasm ?) to abate. The pain, however, keeps me from exercising as much as I would like and need. I do better on a treadmill than on a walk because the swinging of my arms can induce the pain. Hopefully, with time I'll get better conditioned. I regularly get hot periods (hot flashes?). These periods come at about 4 p.m. each day and when I'm frustrated or under stress. I just mentally note them, ignore them and move on. My eyes are quite watery but it may be unrelated to my lung problems or associated drugs. During the year I've had no cold, flue, other illness or episode of rejection. I'm a bit jittery but with the reduced Prograff I may be getting better.
What do I see as my limitations? I'm not doing any running, hiking, bicycling or heavy lifting. I stay out of the sun as much as possible (no more beach sun bathing due to the sensitivity of my skin due to the drugs). I still try to do some yard work and the energy to do so is slowly returning. Our gardener is doing the heavy work. Someday I'll try to swing a golf club.
I think my work of visiting the graduates of the Loma Linda School of Dentistry is enhanced. I talk freely about my medical history (especially during Organ Donor Awarness Month) and this opens up my clients to talk about their personal history. Frequently our conversations are deeply spiritual. I tell people that my life as been transformed from black/white into color. I seem to be living life with a greater intensity. I get very tired by the end of the day and that has caused me to scale back my activities with the World Museum of Natural History. My mother moved to Loma Linda a little over a year ago so I'm able to spend more time with her. I'm also spending time with the Huff n Puff forum each day trying to help others with Pulmonary Fibrosis. Rabbi Potok died this past July so I've had steady work updating the website and responding to queries about him. Greg, Ramona and Lilia will only be in the area until the end of June so I'm trying to get as much time as possible with them. I looking forward to see Barbara, Wayne, Caleb and Reuben in early July.
Someone in the future may be helped by a little discussion about a couple of problems--pain and discouragement. The pain has lingered longer that I expected but I really solved the problem when I realized a spasm of pain was like a door bell ringing (Pavlov 101). Now when I feel some pain I stop and reflect on how good it is to be alive. I'll miss the pain when it is gone, but nonetheless, I'm ready to say good-bye to it. I'm envious of those who get a different surgical procedure for a bilateral lung transplant and experience no pain! I can't say I have ever been depressed but every once in a while I get discouraged when I get very tired or experience some limitations. I have solved this by noting the discouragement and that I need to stop, take a deep breath, slow down my pace, and once again reflect on how lucky I am to be alive. I also realize that this condition is primarily caused by the medications.
Ocassionally someone will ask me if I would do it again. The answer is an emphatic yes! Never doubt that it is a long ordeal and I will be devistated if someone takes the material here as a reason for not going forward with a lung transplant. The purpose of this site is to encourage those who qualify for a transplant by giving them an idea of what is ahead. It is a long ordeal and is daunting if thought about as a whole. It is something like child rearing--if a person knew all that was involved from birth to 20 years it would be overwhelming, but a day at a time is managable, even a joyful. Likewise, don't try to go over all of the ground at once. One only has to live a day at a time and in that sense the entire process is well worth going through.
I have told friends that I now understood Dickens (paraphrase), "This was the worst year of my life. . .This was the best year of my life." Everyone will understand why it was a difficult year. It was a good year because my relationships with family deepened, likewise with friends, and I made a host of new friends with pulmonary fibrosis. Sharing information on the Internet was a great help. I also learned much about myself and how I would handle a difficult situation. My personal faith has deepened and I have found latent spiritual resources. I placed my life before the Lord with the prayer that I was ready for eternity, but if He had more for me here, I was ready to stay. Awakening in my room at UCLA I recognized that I was at UCLA and that the Lord had a mission for me. Every day I live confirms this belief.
July 12, 2003
The last several weeks have had some difficult moments and since this is the first rough spot since surgery I'm making note of it.
In early June I traveled to the east coast and visited dentists in New York, New Jersey, Pennsylvania, and Maryland. I returned home tired and knowing that a problem was brewing. I had a regular appointment with my primary physician on Monday so he ordered blood tests and checked me carefully. The blood chemistry led my doctor to immediately ground me and tell me not to even think about leaving the area on another trip for at least a week. He immediately prescribed medication that should have cured the problems that I was having in my gastrointestinal track. The follow-up blood test revealed an imbalance in Potassium and high levels of creatinine. He ordered me to get to UCL ASAP to see Dr. Ross my transplant pulmonologist. More blood tests and a urinalysis were done. The results led Dr. Ross to ground me for an additional week. He then started me on a round of Cipro to cure a bladder infection. Now this isn't a fun medication and I'm sure it is responsible for the intense pain that developed around my right elbow. However, the regimen started clearing things up. Dr. Ross also changed my urinary medicine to Hytrin which would not only reduce the benign swelling of my prostate but keep my blood pressure down. This past Thursday more blood tests were run and everything has improved. My grounding is lifted, and I'm titrating up to the next level of Hytrin. I even slept better last night. I'm getting tired (no pun intended) of waking up every hour on the hour.
I noted something during this period. Before surgery there was a goal and I was always working to lose weight and get ready for surgery. After surgery there was always the feeling that things were going to get better. With this little set back it was easy to get discouraged, though I would not say depressed. Doubts would creep in regarding whether I was on the slippery slope. Now that this episode is past I'm stronger and will take future difficulties in stride. Part of my problem is that I'm so eager to work and make up time from my disability that I try to put in a full week's work and am disappointed that on some days I just can't go full tilt. I have a wonderfully supportive environment including the School of Dentistry so all of this pressure is self imposed. I basically believe that working and doing what I love to do is therapeutic.
December 13, 2003
Much has happened since my last post in July. I have spend a lot of time on the road traveling for the School of Dentistry including a solo trip to British Columbia and a business/pleasure trip to the Midwest which included time with Greg and family. Oh, yes, I must not forget the driving trip that Laurentine and I took to Idaho to see Barbara and family. On each of these trips I left Laurentine for the week while I worked in the Midwest or in northern Idaho/eastern Washington.
Much has happened with my medical condition as well. The problems with creatinine levels have continued. Dr. Ross, my pulmonologist, found that I was having elevated levels of the BK virus in my kidneys and that was doubtless the source of my urinary problems. They are now doing a small research study to try to ascertain why lung transplants are getting the elevated levels. My nephrologist here in Loma Linda recently went to a convention where the kidney transplant physicians were trying to determine why only kidney transplants have problems with the BK virus. Well, they are not the only ones. There isn't much that can be done for the BK virus and it leads to dialysis and/or a kidney transplant. Fortunately, if given a chance the body regulates the level of the virus. Pat, who I met on the Internet had the problem following her lung transplant and her creatinine levels are going down. The mode of attack here is to take me off of cellcept and attempt to help the body with an anti-viral medication. On Monday when I go back to UCLA I'll get the latest blood chemistry results. At present I'm only taking 10 mg of prednisone and 0.5 mg of prograf each day for control of rejection. Of course, I'm taking lots of other things as well for other problems.
I have less energy and stamina that I would like. This past week they did a dobutamine cardiac stress test and it proved that my heart is in good shape. The more common pulmonary function tests are around 80% of predicted and holding steady. I still have a deep ache in the rib cage near the site of the surgery and when I exercise it is exacerbated. Sometimes it bothers me enough to take a break from what I'm doing. These factors have limited my gardening, but perhaps by spring I'll be doing better.
Life has it's challenges including the normal patina that develops by living. Since my last report I had my 64th birthday. I plan to have many more. Last Sunday evening was the UCLA Heart and Lung Transplant Holiday party. It is always wonderful to see how many people stand up when the roll is call for all individuals who have had their transplant for more than 12 years. It was announced that UCLA is approaching 1400 heart transplants and lung transplants stand at 191.
I still check in with Huff-n-Puff every day, sometimes more than once, in an effort to support others facing the issues surrounding Pulmonary Fibrosis. I have had direct and personal contacts with two men who are patients at UCLA. On is now about 15 months post transplant and just called to let me know that he is back from a trip to Australia. The other one who is only about 10 months post transplant was at last reporting vacationing in Germany.
I once again making midrange plans. I'm planning for the new year and throughout the spring. Early next week Laurentine and I will leave for a driving trip to Idaho for Christmas and return before New Years day.
December 20, 2003
Slow down Bill. On Monday of this week I had a routine visit with Dr. Ross at UCLA and then a routine visit with mall primary care physician, Dr. James Larsen at LLU. Dr. Larsen was concerned about my vulnerability to the new strain of flue that was going around and gave me a prescription for Tamiflu to head it off. I already had the standard flu shot. On Tuesday, Wednesday, and Thursday I recorded frequent readings of BP, pulse, and temperature and doing fine though I felt like I might be catching a cold. On Thursday evening I took my first Tamiflu pill. Friday morning I woke up feeling like a truck had run over me, however I didn't have a headache, or body aches but I did have periodic spasms of coughing. Through the day my temperature ranged from 99.9 to 98.9 with my normal reading typically being 97.7. On Saturday I felt better though I didn't have much energy. My temperature has been between 98.2 and 99.3. My throat is raw from coughing and my abdominals are painful from the coughing. By nightfall the coughing and phlegm in the throat is pretty well gone.
December 22, 2003-January 2, 2004
By Monday morning I was feeling good enough for us to leave on the planned driving trip to Caldwell, Idaho. We spent the night in Winnemucca, Nevada and arrived Tuesday afternoon. We had a wonderful Christmas with Barbara, Wayne and the boys. Our return to California was slated for Monday December 29, but incoming storms caused us to change our plans and get ready to come home on the 28th. During breakfast several inches of snow fell so we decided to wait. Finally we got on the road and had an uneventful two day trip home on the 30/31st. The thrill of New Year's Day was seeing the transplant float in the Rose Parade. It had been the idea of a UCLA lung transplant from the year 2001!
January 3-7 2004
For some time I haven't felt like I have had all of the pep and energy that I should have. Testing to eliminate possibilities continued throughout December. It was also noted during our trip to Idaho, but on one day I walked at a leisurely pace through all of the various wings and on both floors of a large mall in Boise, ID. However, this morning I hit the fan. I found that I soon got out of breath (SOB) walking from one room to the next. After taking a shower I had to ask Laurentine to come help me dry myself. Nonetheless, I could still function by walking slowly. At noon we had lunch with my mother at the home of my brother and his wife (both RNs). As we were leaving Janette said, "why don't we go down to my office in the Loma Linda University Medical Center and see what your oxygen saturation is." After a short walk into the office from curbside the oximeter showed my oxygen saturation to be 83%.
A call was soon made to the lung page operator at UCLA and the on-call transplant coordinator soon called back with instructions to go to the LLUMC Emergency Room for testing. The chest x-ray didn't show any change in the past three weeks, and a VQ scan didn't show any evidence of a pulmonary embolism. My creatinine and BUN levels show now signs of improvement. Finally, at about 3:00 am I was admitted into a room on the top floor of the Medical Center. For those who know the area I had two large window panes with one framing Mt. San Gergonio and the other framing Mt. San Jacinto. Each morning I was in the hospital there was a magnificent sunrise over Mt. San Jacinto!
The next couple of days were devoted to bed rest. At one point it was taking between 7-9 Liters/min of oxygen to keep my oxygen saturation in the low 90%s. Much of the time I was on 4 Liters/min. Phone calls went back and forth between LLU and UCLA. I was given heparin to prevent/clear clots, my prednisone increased from 10 mg./day to 60 mg./day, I was regularly given an IV dose of an anti-biotic and another IV dose of an anti-viral! On the 8th I was off of supplemental oxygen all day -- as long as I was in bed, and through the night I had been up and walking with oxygen support. The doctors wanted me to get to UCLA to see Dr. Ross, but there were no rooms available at UCLA! Finally, after another consultation with Dr. Ross I was discharged to my home along with an oxygen concentrator, E-bottles of oxygen, a pulse oximeter, and pill versions of anti-biotics and anti-virals. The earliest date for seeing Dr. Ross looked like it would be on Tuesday January 13!
January 8, 2004
On Wednesday evening we received a call from UCLA stating that Dr. Ross could see me on Thursday! Laurentine rousted me out of bed at 4:30 am so we could beat the traffic through LA and the bronchoscopy was performed about 11:00 am.
While waiting in the surgery center along came Libby and her husband. Her double lung transplant had been done on about the 20th of December. She looked and sounded great!
January 9, 2004
I got an e-mail from Dr. Ross today stating that "the biopsies were "clean" and without rejection or overt infection." I'll continue the anti-bacterial and anti-viral course of medication and I'm now on a schedule to reduce the level of prednisone back to 10 mg./day.
Throughout the day my oxygen saturation was measured at about 2 hours intervals (always sitting here at my desk). I've taken no supplemental oxygen today and moved cautiously around the house. My oxygen saturation while seated was always found to be between 90-93%.
Needless to say, I've had a number of needles in me this week and not all of them were successful. I have a large hematoma that nearly covers the top of one hand. Both forearms look like they have been through a war! It's all worth it.
January 10, 2004
This series of "bulletins" is a journal of my disease and the events surrounding my lung transplant. But, it is more than that. It is my desire to communicate this experience with family, friends and others with the hope that something will be found here that will be helpful and possably even save lives. To that end I'm adding some reflections on this recent experience.
Following my visit with Dr. Ross on December 15 I had time to take a client to lunch. Immediately upon getting into his car for the drive to a restaurant I realized that he was coughing and sneezing. The thought passed through my mind that I should call off the lunch. . .maybe.
After I received the prescription from Dr. Larsen the pharmacy refused to give me more than one half of the six week course of medication he ordered stating that my insurance only allowed one prescription of Tamiflu each 6 months. Since I seemed to get better, and we were leaving for Idaho, I didn't pursue the matter. Soon after completing an intermediate dosage of Tamiflu I got worse and ended up in the hospital. . Maybe
The Nursing staff that cared for me at the LLUMC are top notch.
Influenza is serious business. The secondary benefits of exclusionary testing for such things as the condition of my heart and eliminating the possibility of a pulmonary embolism are benefits that I would not have if I were "healthy." Assembling a pill schedule for the day is getting difficult!
February 14, 2004
This past month has had its share of ups and downs and medical appointments. In early February I had my most recent PFT and most of the results were around 70% of predicted rather than near 80% as they have been running. However, following a breathing treatment with an inhaler for about 10 minutes the readings were close to their former readings. I took this to mean that I was still recovering from my recent problems. I still have nasal congestion and cough up phlegm.
PFTs notwithstanding, I simply don't had much energy. Blood tests were run to check out my level of B-12 and Thyroid Stimulating Hormone (TSH) and these were found to be normal. My Nephrologist and I had a lengthy discussion about the BK virus leve,l which is high, and whether a biopsy of my kidneys should be done (in the case of lung transplants the BK virus can migrate to the kidneys and destroy them). There appears to me to be some disagreement between him and Dr. Ross about how best to treat my BK virus so more blood testing will be done prior to a decision on a biopsy. I told my Nephrologist that all of the blood chemistry was interesting, but the thing that really got to me was the lack of energy. He responded by saying that "what would you expect with your weak lungs and anemia!" Before I left the office I received a shot of procrit that should bring up my blood iron level so that I can receive the maximum benefit from my lung function.
February 20, 2004
The results of my blood tests indicated that both my BUN and creatinine were even higher than previously measured so a kidney (renal) biopsy was scheduled for today. The procedure is not much different than drawing blood. The small room where the procedure was done was filled with people -- the Nephrologist, a doctor guiding the needle with ultrasound, a pathologist with microscope for examining the tissue, a resident (friend of Greg), and another person who I think was a medical student. A nurse named Stephanie prepared me for the procedure. I offered to leave the room due to over crowding! The Nephrologist and I each have a sense of humor!
Once the choice of kidney was selected a small hole was made for the insertion of the biopsy needle. To prepare way the doctor injected valium with these words, "I'll feel better, if I give you some valium." Somewhere these words should be enshrined. Four specimen were taken. Following the procedure I was returned to an outpatient area and kept on my back for 5 hours prior to being released from the hospital.
March 12, 2004
I subsequently received a verbal report from the Nephrologist with his conclusion that he found some scaring but doesn't know if the scaring was permanent, or temporary, of long standing or recent. The slides are still out to see if the BK virus is in the kidneys.
On Thursday I had a hurried visit with Dr. Ross at UCLA. My creatinine has reached 4.7 and BUN has reached 67. My hemoglobin has improved to 10.9. Dr. Ross has initiated a full court press to save my kidneys by dropping my prograf, valcyte and drastically reducing my lasix. To replace these I'm now going on Rapamune (2 mg/d), and Cellcept (2000 mg/d). This approach is thought to provide the anti-rejection capabilities that I need with minimal impact on my kidneys. I continue to take Leflunomide in an effort to supress my BK virus. I will see my Nephrologist on Wednesday and I'm certain that he will have more to say.
I continue to get short of breath very easily. I have to move around the house rather slowly to stay within the range of my capabilities. I drive comfortably. Yesterday I drove to Loma Linda and back and today I went to the grocery store, but I used the electric cart once I was there. My sleep at night is fairly good and I usually get in a 2 hour nap sometime during the day.
July 2, 2004
This is a long break from my previous report. In late March I was again admitted to the LLUMC and this time my lungs were quickly cleared (a fully conscious bronchoscopy in the emergency room!) the focus turned to my kidneys. Finally after 6 days I was discharged with my creatinine and BUN levels close to the level required for dialysis. For days I suffered from lack of energy and mental focus. Finally after some urgent calls to my nephrologist on May 7 a catheter was placed in my chest and I started on hemodialysis. Hemodialysis is not all that I expected it to be. I certainly have not had energy like a pony. I'm awaiting news that the date for the minor surgery to implant a tube in my abdomen is set so I can go on peritaneal dialysis.
It is not that I don't have some good days, or that my will power can't overcome the problems. On our anniversary on June 11, I prepared a gourmet meal for my wife, mother, brother and sister-in-law. I had to carefully prepare the menu and make preparations throughout most of the week! It was a meal that none of us will ever forget. I give special thanks to all of those chef's on the FoodNetwork that taught me what to do as I watched them every day.
Truly life is worth living and every day is so very precious.
Thanks for your prayers, cards, and notes and e-mail.
L'Chaim,
Bill
