Another Bruised Arm
I was at the hospital all day yesterday. At the end of the day, I had a pretty black and blue arm and good reports. The kidney functioning is back on track and getting better.
Thankfully, some of the meds are being tapered. One med was removed, but two new ones showed up. (They are Legion.) I’ll be very happy when one is down to a minimal level. It gives me a concentrated migraine and has caused a rash to erupt. But, my mantra helps; I do not have to go to dialysis.
Yesterday was an interesting day at the hospital. Everyone arrives in the clinic about 7:00 and waits to register and to be called for blood draws. After the initial draw, the place vacates as folks go to eat and around 9:00 everyone returns to wait for the coordinators and doctors to do appointments in between the other blood draws at 11:00, then 1:00 and finally at 3:00.
I was watching the choreography in the room at 9:00. Everyone takes their immune suppression drugs at 9:00. It was funny to watch this entire waiting room pull out bottle after bottle of meds, count out little pills, line them out and start swallowing. Such is the way to life.
It was interesting to watch the people as they returned to the waiting room. One of the patients was told she did not have to wear her mask any more. She came out celebrating and in a striptease manner tossed the mask to her husband. Another was transplanted this week. He was still tender and in a wheel chair attempting to comprehend the process. Another was in for his annual visit. One man was there with his son-in-law. They came on the bus from Edinburg. The son-in-law offered his kidney to his father-in-law, but a deceased donor came through. (Of course, this man had thoughts about his six children who did not offer) There was more Spanish than English in the clinic. I guess I need to practice my Spanish.
Next Friday it will be time to reload and do it again.
The Social Security Administration called today. I am officially a disabled American. We’ll see what that means when the materials arrive.
Home, Again
We made it to Shelley’s parent’s house on Wednesday after 14 hours on the road. (There was one hour of waiting for a 10 car pile up to be cleared on Hwy. 90 outside of Rosenberg, so that made the trip a bit longer.) Several of our friends evacuated to the Texas Hill Country. This was not a coordinated plan, but it was nice to have those friends around for Shelley and the boys to commiserate with.
The plan was to return on Tuesday. I called our house on Thursday and Friday and got our answering machine, so I knew we had electricity. Several friends trickled back and gave us reports that our house had no damage. The story that motivated us home was when our friends, whose car broke down while they were getting out of Houston, called to let us know the traffic on I-10 was flowing and the Beltway was moving. That call came at 10:00 on Sunday night and by 10:30 we were packed and on the road.
The trip back from Lockhart was a breeze compared to the journey to Lockhart. The traffic was full and flowed on I-10. The Beltway was empty as there were only five cars on the road. When we got to I-45, no one was on the road. We made it home around 1:30 am. Since we did not take much with us, it did not take too long to unpack.
We were in bed by 2:00 am and then up early to look around and survey the damage. Houses were on slabs. Roofs were in tact. There was no flood water in homes. Neighbors are slowly coming home. There were limbs down all over the neighborhood, but nothing substantial.
In addition to my calls, there were messages on our answering machine from the city telling us there was a mandatory evacuation for our neighborhood. We have a tree that leans in a new direction and some large pine branches that will need to be removed, but all in all, nothing to complain about. Someone came and raked up our limbs. Thank you whoever you are.
As we have watched the news, I have tried to explain to our boys that the destroyed homes they see on TV were on target to be our homes. They cannot fathom that destruction. After going through floods with my parents, I don’t want to deal with that type of destruction. But, there are two more months of hurricane season.
Shelley’s folks were delighted we were there and it was good to see them. Since I have been tethered to Clear Lake since May and then the surgery, we have not made plans to visit with them. This was a survival serendipitous visit. It was also good to enjoy Lockhart BBQ. For the past five years, with a low protein diet, I have not had the pleasure of Lockhart’s fame.
The clinic hunted me down today and labs are scheduled for Thursday, so it will be a day at the hospital to see what is happening with the transplant. We got one report back and the kidney functioning has declined a bit. I’m a little concerned, but it could be that a different lab did the testing. (I’ve had this experience before.) It will be better to have it done back at the hospital and to do the full day of testing to determine the levels. Swelling was not too bad today, but I understand why you should take it easy after surgery!
There will be soooo many stories in the weeks to come; sagas of people taking 24+ hours to get to other places. There is one family I know whose dad is a shuttle commander. Dad went into commander mode. He kept calling his family “a good crew.” They were stuck in Katy for six hours. He attempted to dehydrate the family so they would not have to go to the bathroom; he rationed the supplies and did not allow the AC to be on for the 24 hour trip to the Hill Country. On his way back home, he said he had heart palpitations when he went through Katy. (I think if they have another child, they need to name her Katy!) Weston kept calling their son asking where they were and what he was doing through their trip. All the son could say was, “I’m not drinking water.” Since I am still in medical seclusion, I will miss all these stories. I wish I were able to hear them all in person.
All in all, we are home and thankful. We are trying to get stuff back to usual. School starts again on Thursday, so the boys are enjoying the hurricane holiday.
Road Trip Exodus
It is difficult to believe that a mere two weeks ago I was in the hospital receiving a kidney transplant. Between the clinic, pain management and current events, I have not found the time to write.
Last Thursday was a full day of testing, drawing blood every couple of hours (without the central line) to negotiate absorption rates of the immune suppression drugs. The Thursday bloodwork was very good. The marker for kidney functioning continues to improve and the transplant team reduced some of the immune suppression drugs. The dietician continues to lecture me about diet, but after living on a VERY restricted diet for the past five years, I’m cutting me some slack for a couple of weeks.
Since all was going so well, the team decided not to do the med levels on Monday and I was given the option of doing bloodwork on Monday in Clear Lake, rather than driving all the way down to the medical center for a stick in the arm. I took the local option. It saved me time and pain as the incision is still making itself known. (Even a visit to Vicadinia did not seem to help.) I do not have Monday’s results.
The plan was for me to spend today (Thursday) in the clinic doing the med levels again. That was until Rita came into our lives.
I spent time with another temperamental woman back in 1983. Her name was Alicia. She came into the Texas coast as a category 3 hurricane. All I remember was I stuck around thinking I could ride it out. The hurricane itself wasn’t so bad by the time it traveled 100 miles inland; lots of tornados, dozens of trees downed, rising water. All that was tolerable, but the weeks without water and electricity (read, no AC) and the bugs were a pain. It was also the week I was heading off to Golden Gate Seminary. (As soon as the airport was open, I took a flight for that adventure, but that is another blog post.)
Having
been there, done that hurricane thing before, being immune suppressed and in those post-hurricane conditions seemed like a bad idea. Bugs and no immune system, rising and residual flood water with a healing incision and chest catheter seemed to invite more problems and not able to lift anything seemed to complicate things. Then there were the anticipated storm surge models. Rita was projected to be a category 4 or maybe 5. Our neighborhood has a mandatory evacuation with category 3 hurricanes due to the potential for rising water. Monday we made plans for a possible departure to Lockhart (Shelley’s folks) if Rita were to come around for a visit.
First on the list was to get meds filled. The pharmacy did not have a ready supply, but promised they would be there by Tuesday. Plenty of time to leave.
Clear Creek Schools decided at the close of business on Tuesday to close schools for the rest of the week to allow Clear Lake citizens to evacuate. Meds were not available on Tuesday, but by 10:00 am on Wednesday, they would be there. I cannot lift anything, but spent Tuesday preparing the house, gathering papers (flood insurance policies!) and video taping an inventory of our house.
We put things up and packed on Wednesday morning. At 10:00 am Shelley went to get meds, as promised. However, at 10:00 am, there were no meds available. They would be available at 2:00 pm, so back to putting up more things. At 2:00 pm we discovered the pharmacy LOST my scripts. After connecting the pharmacist with my transplant coordinator, we got partial fills and made plans to get the rest of the meds when we got to Lockhart. Needless to say, when we return I will find a new pharmacy.
We left our drive way about 2:15 pm. The trip to Lockhart usually takes about three hours. At 4:00 am, yes that would be fourteen hours later; we drove up to the front door of Shelley’s parent’s house. This trip was bumper to bumper and 5-20 mph all the way across Houston and central Texas. There was a ribbon of red in front of us and a ribbon of white behind us as far as you could see into the night. The only other light was a full moon. When the moon was low in the sky, it was an eerie red glow that would be consumed by darks clouds every now and then. Foreshadow, anyone? When we got past Columbus, TX, the traffic did pick up to 55 mph. Had we been able to depart at 10:00 am, with meds, it would have been better.
I bear witness that an incision swells and you can feel your heartbeat at every stitch after sitting up for 14 hours. Also, the jury is still out on this one, but I hope the little mask was enough of a barrier against all the people we encountered on the way. So much for medical seclusion and taking it easy for sixteen weeks!
We have discovered several of our friends are here in the hill country, so Skyler may get to have some sort of birthday celebration on Saturday after all. I, on the other hand, am holed up in a back bedroom attempting to comply with the medical orders I was given.
I have been watching the news all day and if I thought last night was bad, it does not even compare to the current departures. I was told by a police officer last night there were approximately 600,000 people departing last night. By tonight, almost 2 million people are estimated to have evacuated Houston – if they can. The broadcasts show traffic bumper to bumper at a stand still, cars out of fuel, tempers rising. Now the point of Rita’s entry has moved up the Texas coast from Galveston to Beaumont and many people are turning back home. However, the cone of plausibility still contains Houston and with a category 5 or 4 hurricane the storm surge will be substantial.
Jerry has evacuated to the Dallas area. He is still tender and unable to pick up anything, so he decided to pack some clothes, papers, lock the door and head north. We did not pack too much with us, a couple changes of clothes and documents. We left pictures. (Sitting here all day, I have thought of pictures and baby books I wished we had brought along with us. They are securely wrapped in water tight containers upstairs. Hopefully the storm surge will be small, the roof will hold and they will make it. I’ll work on a packing list for next time since global warming is not going away.) I guess we are learning how to carry our possessions only in our hands and not our hearts. It makes for a quick escape.
If someone had told me I would be on a massive road trip two weeks after surgery, I would not have believed it. I’m just glad I am two weeks into this experience and able to gingerly make this trip. Last week I would have been toast. The story remains to be told when we will return and then what we will face when we get back. My transplant coordinator called today to let me know that my appointment for Monday is canceled, but I will have to have tests done next Thursday. The big question is where!
Vicadinia
Yesterday, my doctor wanted to run tests on the levels of the immune suppressants in my system before releasing me. The testing took seven hours. After all the blood draws, it was late afternoon before we could head home and to the drug store.
The blood draws in the hospital were not too painful since they were drawn on a central line. The central line was this tube out my left shoulder. It was a good friend. Once we knew for sure we did not need the central line any more, the nurse cut a couple of stitches from my left shoulder and began to pull all these things out. One was a plastic tubing followed by a very large needle then followed by a longer plastic tube. I quit watching after those three things came out. By then end of the experience, there was a whole array of synthetic things on a tray in front of me. I’m glad I was out when they put the things in.
When I left the hospital, my blood work was at the max end of normal blood work. I have not had that reading in over a decade. I’m back to the hospital on Thursday. I’ll learn Thursday about the med levels and we will start again. They will repeat all the tests that were done on Monday, but without my friend, the central line.
One of Monday’s stops was the drug store. We dropped off a half a dozen prescriptions. I began counting and organizing the meds into pillboxes when we got the meds home last night. There are many pills to consume at various hours of the day and I have set alarms to remind me it is time to take something. I now rival my mother and mother-in-law in the number of medications per day as mine fill an entire nightstand drawer.
Today has been a day of vicadin as I feel the incision pain. The foley catheter was removed yesterday morning, a breath taking experience –literally. I suppose the pain of the catheter masked the pain of the incision, but not today. The incision has made itself known. (For the record, I’ll take the incision pain.) The painkiller has kept the edge off and I am calling “Vicadinia” home for a while.
I discovered today they cut a couple of nerves when they did the incision. I am numb on my right thigh, hip and areas around the incision. I have a clumsy, hobbling gait now, but I’ll take it since I did not have to canter to the dialysis clinic today.
Hospital Update
Progress is determined in many ways, but lately my delineation has been as tubes and other restrictors are removed from my body. I have gone from 13 “things” inserted in me and on me to four. Hopefully, one more will be removed tonight around mid-night. My level of pain will be greatly reduced when they remove one of the tubes, the Foley catheter. (If you are unfamiliar with this devise, you can Google for it. I have come to the conclusion this device was developed in the Montrose area of Houston, probably at that Mary’s biker bar across from Half-price books at Westheimer and Montrose. I picture it as the result of some late night dare. I thought I knew pain when I sneezed with fresh stitches. I knew severe pain tonight when the nurse “straightened” the bed sheets with the catheter attached to the sheets.)
Last night around 10:00, I was moved from Intermediate care to “the floor.” I was in Renal ICU shortly after the surgery, then in Intermediate care for four days and now on the Renal Transplant floor. The move was made because things are getting better. The late at night move was because the staff was preparing for two transplants.
From the Intermediate care room, I had a view of the life flight helipad landing approach. Saturday there were several early morning red helicopters and then around late afternoon there were more red helicopters and then a couple of yellow helicopters. I learned the yellow helicopters were for donated organs.
Those two yellow helicopters brought in a couple of kidneys which brought in four possible recipients. The four were quarantined and tested to see who made the best matches. There was a delay as they were making final selections. One of the patients, who got a kidney the day before me, began to bleed. She was rushed into the operating room ahead of the other two transplant recipients. The sad story is, she lost her donated kidney and will be returning to dialysis. But, two more folks got transplanted last night. Their experience is a stark contrast to mine. I can only imagine the emotion of preparing and the elation of knowing they were about to receive a get-out-of-dialysis-soon card.
Yesterday was a day for learning meds and checking levels. Med requirements have been increased and now that I am on the floor, I and others are supposed to wear masks for protection. Tomorrow will be another day for testing meds. I am not sure at what hour I will be able to head home, but Monday is supposed to be the day to go home.
Jerry is doing very well. He is home, sore, and getting better.
My bloodwork reports my kidney functioning is almost that of a person without ESRD. I am curious what tomorrow’s test will hold. Every day has been better than the day before with kidney levels, but the side effects of the meds are beginning to kick in. The nurses will wake me up tonight around 3:00 am to take more blood so the test results will be back by the time the doctors assemble for their 7:30 rounds.
Major Owie!
It is the first day on a new lease on life. But it sure is a major owie! I have yet to see the incision. Mainly because I am sill doubled over in pain. The morphine pump has been a good friend in these hours.
Yesterday started with an early drive to Memorial Hermann. Randy Targhetta drove Shelley and me to the hospital at 5:00 am. Jerry and his mom and dad were in the waiting room when we arrived around 6:00 am. I had never met Mr. and Mrs. Wooley. I expressed to them how grateful I was for what Jerry had offered to do.
We signed in and around 6:30, we were taken to the pre-op area where we were issued our lovely hospital gowns, started IVs and took one last round of blood tests. Jerry’s room was across from mine and we could watch each other as the nurses began to prep us.
There was a while to wait, so Shelley, Randy and I went across the hall to sit with Jerry and his parents. While we were there, I reminded him that if there were any second thoughts, there would be no hard feelings and now is the time to voice them! Jerry assured me there were no second thoughts.
The anesthesiologist showed up to explain what was about to happen next. Then he gave Jerry a shot, me a pill and the surgeries were about to start. Around 7:30 am Jerry was rolled off to the operating room to begin the first surgery.
My parents and boys arrived around 8:00 am. At 9:30 the anesthesiologists came to report that Jerry’s surgery was underway and it was time for me to have a little shot.
That was the last coherent thought I remember until waking up to have a renal scan. The renal scan showed that the kidney was working very well. My initial lab work shows an incredible improvement. The uremic taste that has haunted me for the past year is gone.
Last night was a short night of nurses picking and probing. It continued on today. I did not know pain until I sneezed today.
Jerry was up and walking. I hope to do so tomorrow!
The Day
Well, it is about 5:00 am and we are heading off to Memorial Hermann. Check-in is at 6:00 am and surgery starts around 8:00 am. Surgery will be about 6 hours. So this will be a long day.
When I can post again, I'll give an update.
Donor #9
Many people have been asking about Donor #9. Donor #9 came over tonight to visit. I thought you would like to see his picture.
Tonight was a good time to hear his side of the story and compare notes. The coordinator does not “share” information. It is up to the donor and the recipient to get the story from each other. He has had a full summer and this has been the only night before surgery we could get together. As we talked, I learned some things that my transplant coordinator had kept from me!
He started this journey on June 7, the day Donor #1 and I were to have had surgery. He was at the
Union Baptist Association (UBA) office and heard what had happened. After doing some research of his own about kidney transplants, he called me and then called the transplant coordinator. On June 17, he had moved to stage one testing.
Donor #8 failed stage 3 on July 7. (A bonus to all this is that many of my friends are very aware of their health conditions.) Donor #9 and I were tested for the initial cross-match on July 8. The first cross-match came back negative and that was the green light to move to the next phase. It required many more vials of blood and a complete body scan and physical.
Those test results provided information for the medical review board. The medical review board made their decision after a couple of weeks and then it was time to schedule surgery.
Since two surgical teams are needed for this transplant, they had to find a date where two operating rooms were available when the two surgical teams were going to be in town. Once the date was set, it was time for the final cross-match to be performed as a double check. It came back negative and we are moving forward to September 7.
OK, I know if I only kept the masked picture I would receive untold negative email. To prevent that from happening and since I have his permission, here is Donor #9 with out the mask.
Donor #9 is
Jerry Wooley. He is one of the pastors at
Park Place Baptist Church in Houston. He and I have known each other for over a decade of working together through UBA projects. He told his church this morning, so the cat is officially out of the bag. This will be his first time to have surgery and since I cannot have flowers in my room, feel free to send him lots of best wishes.
I cannot say enough thanks to Jerry. Other than Shelley saying “yes” she would marry me (and actually showing up at the wedding to go through with the deal), this is the most profound gift anyone has ever offered to me. Jerry is offering a functioning organ from his body to replace the organs that have failed in my body. Jerry will save my life on Wednesday.
We have decided we’ll get together September 7, 2006. He is deciding where we eat next year since all I could get him this year is a hospital meal.
The Essential Food Groups
Word came back that the final cross-match was negative and so now it is time to prepare for Wednesday’s surgery. Part of the preparation is to eradicate an immune system so I will not immediately reject the donated kidney.
Pictured here is my daily portion, for now. The four big ones on the bottom and the four rows on the right are my new lifelong friends. These drugs will be regulated once I have the transplant so the kidney can live (and I can live), but they will be necessary for the rest of my life. That is a staggering thought.
The first handful was rather daunting. It is a counterintuitive act to swallow so many pills – especially knowing these pills are not designed to heal you of anything.
This week has not left much time to write. I have been handing off work at the office and going to the hospital every other day. Now that the drugs have started, I am sequestered. I hope there will be time to capture some thoughts.
