Monday, July 23, 2012 Baylor Clinic Visit

Ramiro and I drove to Ft. Worth yesterday so that I could go to the Baylor Transplant Clinic for an appointment that was set up when I was discharged a month ago. I've been going for labwork with Dr. Moulton on a weekly basis since we've come back, but the Baylor team wanted to see me in a month to make sure that the Arkansas lab/doctor were getting it right. So far my labs here have been very good, so I did not expect any problems, although I did have a lot of questions.

My Baylor lab work looked great, and my creatinine level was 0.5!!!! Everyone is so pleased with my numbers. Bettina told me first, then Dr. Fishbach said he sneaked a peak at it before seeing me because he wanted to know what it was! I mentioned that I was getting some readings on my blood pressure cuff that I had "an irregular" heartbeat, and wanted to know what was going on. Dr. Fishbach said, after listening to my heart, that the upper chamber (atrium) was pumping just a little prematurely, so he suggested doing an EKG. The EKG shows "normnal rhythm" in "sinus' rhythm, which he said could be due to low magnesium.  He checked my mag levels and sure enough, they were the lowest they have been. He recommended an adjustment to that supplement. I told him that my ankles swell up by the end of the day, and he said that could be due to the amlodipene, which is one of the two blood pressure meds I take. He talked about cutting it back some, but I told him that I would worry more about keeping my blood pressure at a good level rather than worrying about big ankles at the end of the day, and he agreed. He suggested compression socks as an alternative. I also mentioned that I'm getting cramps in my toes at night, and he said that was likely due to the magnesium. So, bottom line is that I'm to increase my mag dosage and get lab work in a week, and maybe another EKG to see whether it improves.  The only other issue was that my Prograf number was 27 (don't know the units), and it's supposed to be in the 8-9 range. Dr. F thought the test result was a fluke, because he said that at 27, I would be having visible tremors, and obviously I'm not. Besides, as I told him, last week my number was 8.4, so I can't imagine it jumping up that much from one week to the next. So that will be tested again at the end of this week, and the Prograf reduced if it really is that high. Prograf has been a problem for me all along because I don't metabolize it, and it tends to stay in my system and build up. When I was first transplanted, I got a big does of it, and then I did not get another dose for the next 3 days because the level was so high in my system. When I was finally started on it, it was at 0.5 mg per day, which was increased to 0.5 mg. twice a day about a month ago.

We stayed at the Homestead Suites on University Dr., which is where my sister stayed when she was down there. Don't think we'll stay there again. The shower was not good, and didn't drain quickly enough, plus they don't do room cleaning unless you are there for more than 7 days.

Sunday, on the way into Texas, we ate a late lunch at Taste of India in McKinney. That is one of our favorite restaurants down there, and the buffet is a real treat. For dinner we got a salad from the Central Mkt salad bar, which we took back to the room and ate late. This morning we had breakfast at the hospital cafeteria, then got take out lunch from Esperanza's. We stopped in Sherman at the Whataburger and ate our lunch there. The beef fajita burrito was great. It had grilled onions and rice/beans. We also got a chicken fajita burrito, but are saving that for tomorrow; the beef burrito was so big we both made a meal out of it.

Of course no trip to FW is complete without a trip to Sprouts and to Central Mkt.

It's late and I have to go. Tomorrow we are meeting with Doug Elmore, an ins. rep for Aflac; we are interested in getting a cancer policy.

Sunday, June 24

This is the end of the week when I had clinic only once, on Monday, June 18. We've spent the week just taking care of me--walking for exercise, going out to eat,going shopping, driving about. It's time to get back to "real life." we are hoping that the doctor tells me tomorrow that I am well enough to be released to the care of my nephrologist. Of course I will need weekly clinic visits in Arkansas, but it will be a lot easier--and less expensive--if we can do it up there rather than staying in this $350 a week apt. Plus we are paying for eating out, we need to buy things that are duplicates of what we have at home,etc. I continue to feel great, for which I thank God often. I have my old energy level back, and I walk faster and longer than Ramiro, whose sciatica has been bothering him. He will need some medical attention when we go back home. I know he's been setting aside his concerns so as not to interfere with the care he gives me. I've been trying to do more around here to show him how much better I feel. Before the surgery, and once I was released from the hospital, he treated me like a porcelain doll, afraid I'd hurt myself if I lifted a cup. He took on all my chores and tasks and shouldered his as well. It's not fair to him, especially now that I'm able to take care of myself and some of the household tasks as well. One day this week we went to Trader Joe's which opened its first store in Texas here in Ft. Worth just a few blocks from our apartment. The first few days that it was open, the streets were lined with cars of shoppers, and the parking lot was packed, with cops directing traffic and keeping order. Ramiro, who has great "parking karma" found a space right by the front door. This Traders is smaller than the one we went to in Santa Fe, and didn't seem to have as many salt-free foods as we found in SF. There were a lot of "gourmet items" that we'd like to try, but we can't take much in the way of frozen food, and we prefer Central Market any to Trader Joe's. We are planning to make a last minute shopping excursion to Central Market to pick up coffee,tortillas, and several steaks and other meats and produce that you just can't get in Arkansas. I did find some "two buck Chuck" (Charles Shaw) white wine, but they were out of the red. However, CM carries Shaw wine, so I'll pick some up there. I'm not drinking wine yet, but will ask at clinic next week. Friday we went to the Flying Fish for dinner and loved it-it's just like Aw Shucks or BiG Shucks in Dallas, which we really liked. I ordered a lb of boiled crawfish, but it took me about an hour to peel them. They were good, but more work than they were worth. I was so "enchilada" from the cajun seasonng that we had to go to CM for some gelato to take off the burn! We sat on the CM patio and listened to some music, enjoying a very pleasant evening. Saturday we went to the NortheastMall, which hasa Nordstrom's. I bought a pair of girl's size 3 shoes that fit perfectly! The solution to my shoe problem of not finding small enough shoes I the women's section! The mall is good sized, and we walked a lot. We lunched at Ghengis Grill for the first time. Pretty good. We went to Granbury today with my BIL and SIL Guero and Connie. Since Guero is a realtor, he was able to get us into Pecan Plantation, a gated community that is very nice and has good security. We saw about 5 condos, ranging from $57000 to $90000 (this last one was fully furnished, and very nicely so). If only the lake house would sell...we had two more showings yesterday, according to our realtor. That makes 52 showings in the year and nine months that it's been on the market. And not a single offer or bite, not even a low ball offer. what we'd like to do is get a condo out there and spend our winters there, then summers in Arkansas, at least until the market improves enough for us to sell our golf course house. Tomorrow when we go to clinic, if the doctor doesn't release me to the care of Dr. Moulton, we are going to ask if it would be ok for us to travel up there at least for a few days this week. That way we can haul one load of stuff up there, check on the house, and get a feel for what it's like to be home again. Then we would come before the weekend, to be back in time for clinic next week. Let's see what happens. The couple from Pampa, TX came back from a visit home yesterday. I had suggested that we could maybe go out to dinner when they got back on the weekend, but wife had said she wanted to stay through Sunday so she could go to her Sunday school class, but guess they changed their minds. We saw him today when we went for our evening walk. He is a mechanical designer for National Rig, an oil field supplier. He is thin as a rail, bearded, and looks like a hillbilly. And today he mentioned that he has a pretty large gun collection--my boss Jim would be asking him all about it! Not much else to tell.

Saturday, June 16, 2012

We woke early today, at 6:30, even though we had nothing planned to do. We had breakfast around 8 a.m., then hung around th apt. until about 9:30. I'm moving a little slower than before the PD surgery. I feel the incision (the new one) tugging when I move certain ways. It doesn't realy hurt, but I'm aware of it. I'd lost that sensation from the transplant incision, so I was able to walk at a good clip. Didn't walk after breakfast. We went first to Sprouts, a chain grocery store that bills itslf as a "farmer's market." It has wonderful produce, LOTS of bulk items, including unsalted nuts--got some unsalted pepitas and some dried cranberries. We mostly bought fruit, as we were running low. We have lots of staples and we eat out so often that we don't want to buy any more meat or poultry. After Sprouts we stayed indoors for a while, then headed out to an open house on Littlepage Dr. It's a house built in 1946, not remodeled, selling for $146,000+ The owner died and her heirs are selling it. It is one block north of I-30, in an old neighborhood. The houses have been kept up, at least outside, and the yards are nice. Just one block north, and you are in mansion-ville! I think the area to the north is called Westridge. Don't know whether these little houses will ever be redone or torn down to make room for the mansions--being one block off I-30 makes the area less desireable. Anyway, the house would cost $102 per square foot, which is a lot for something that requires so much work. The closets were teeny in the bedrooms (3) and there was no master bath, just 2 bathrooms in the hallway. There was a garden room, which had indoor flower beds! Actually I really liked that room, which had tons of windows, and could have been a wonderful sewing/craft room. Out in the back yard there was a storage shed, a little greenhouse, and a little workshop. We did not go out to see it. On Monday we are going out to see an open house in far north Ft. Worth, more like one of the cookie cutter houses, but that one has a loft (like Debbie's house in Allen), which could serve as a sewing/craft room. If only the lake house would sell, we could really think about buying down here for a winter home. I'll have a connection to Baylor so long as my kidney is working, so might as well have a place here, so we'll have a place to stay whenever we need to come for checkups, etc. Lunch was at Zoe's Kitchen in the Sam Moon Shopping center (I-35 and Heritage Parkway) in the Alliance Airport area. A quick shopping trip to Sam Moon's, and then home by 4:30, and I'm ready to rest. The outing tired me out. Ramiro is napping, which he now calls "resting his back." We're planning to go to early church tomorrow, then breakfast at Esperanza, a local Mexican restaurant and bakery that we really like. If Connie has a father's day cookout, we'll go; otherwise we're on our own.

June 15, 2012--Removal of PD Catheter

Ramiro and I left home about 7 a.m. for the hospital. This is the day that I get the peritoneal dialysis catheter removed. It is entirely internal, having never been exteriorized because I did not need dialysis before I got my transplant. Went the through the usual pre op--lots of questions about medications, prior conditions, whether Ihad taken my meds, whether I'd had anything to eat or drink after midnight. I had been told to take my antirejection meds with me and to take them at the scheduled time (9 a.m.). The pre op nurse asked me when I had last taken my meds (last night), and I also told her that I had brought my meds to take at 9. She held her finger to her mouth and told me not to tell her, because hospital rules require that a patient not bring their meds from home, and that if I told her I needed meds at nine, she would have to get a doctor's order to get the meds from the hospital pharmacy so that they could give them to me. So she said if I didn't tell her, she would not have to do it. Wink Wink. I got taken down for a chest xray, then brought back up so I could get an IV put in my arm. She sprayed a numbing spray on the top of my left hand, and that's where she inserted the needle, but it still hurt like heck. The black lady who did my blood draws had a very gentle touch and I did not feel that puncture, although I did get a little bruise. I spoke to the anesthesioligist (Dr. Coffee) and the nurse anethestist. That interview was fairly quick, since Dr. Coffee said he knew, by reason of my transplant, that I didn't have heart issues, hadn't had problems with anesthesia, etc. He asked me how much I weighed (103.7 this a.m.) and how tall I am (4-8.5). I emphasized the half inch, and she grinned and said he would be sure to include it. I told him not to drop it because otherwise it would shoot my BMI (body mass index) out the roof. He laughed and rolled his eyes; clearly my BMI is far from going out the roof! Dr. Marlon Levy stopped by and looked at my belly. I told him the catheter had never been exteriorized. He poked around trying to find the end, and when I told him that the lower end extended down into my crotch, he said "well, that's rude, isn't it?" He told me that he would need to make an incision in the belly button and another where he could feel the top of the catheter (right at my waist level). He asked who had put it in, and I told him it was Dr. Hudec in Arkansas. Once Levy had examined me, he said he was going to get into his pajamas, and the nurses came to give me my "happy juice," which I called jamba juice. It's probably valium, and it's supposed to relax you while they hook you up to monitors, tubes, etc in the Operating Room. They started wheeling me down the hall to the OR, but I slipped away long before then. The next thing I knew I was back in the recovery room, and the nurse was asking me if I'd like some ice chips (yes). I got asked about pain level, which I described at about a 3. I am mostly aware of it right at the incision point, but not inside my belly. A little while later Ramiro came into the room to join me, and by then I had been given graham crackers and a diet soda. Ramiro opened them for me, and they tasted so good. My mouth was extremely dry, and I had trouble wetting the crackers enough to swallow them. Ramiro gave me a bite of a muffin we got at Central Market. EVen better than the crackers! After several sips of the soda I needed to pee, so I got helped out of bed, but left to go by myself. It wasn't long before they came in with discharge instructions--no showering until tomorrow, no baths while the incision is open, insistence that I take pain meds (and offer of a prescription if I;ve run out of the ones from the transplant surgery) so I don't have any pain. I didn't take a single pain med after the transplant surgery, so that prescription is still unopened! My two biggest symptoms now are the tenderness around the incision (it is not stitched or stapled, just glued), and a sore throat from where they stuck a breathing tube down my throat. We got home about 2:30 and I went straight to bed. I was awakened by Ramiro at 5, reminding me to take my 5 p.m. meds. Then he warmed up some dinner for me--the leftover halibut from Pappadeaux and the leftover rice from Panda Express. Then half a fried pie that Debbie had brought us. Ramiro had eaten lunch when we got home, and later took a nap alongside me. For dinner he had his leftover Pappadeax dinner--fish, crawfish, fries. Ramiro went for his regular walk after dinner, but I stayed home to rest. I still feel a little of the anesthesia effects (like I could slip into a nap very easily), so better to stay indoors and not risk a fall. Speaking of falls, we are watching Nik Wallenda about to start his walk across Niagara Falls--at night!

VIP tour of Cowboy Stadium

Ramiro and I went to Cowboy Stadium in Arlington today and took the VIP tour. It lasted about an hour and half. We started out in the Pro Shop, then the guide took us upstairs where we sat in the seats and got a look at the field and the jumbo tron and all the other screens. This place defies description as to size and space! The main screens are almost half the length of the field, or that's the impression you get. The Cowboys were practicing, and we could see them live or on the giant screens. Tony Romo (9) is the only one I recognized, but Ramiro could name a bunch of them. Next we went up to see the suites, including what is known as the Jones "perch." This was a room that had a 3-window front toward the stadium, and the windows could open. The perch is just above th 50 yd line, and is directly above the Jones family suite. Apparently Jones and his two sons are more likely to be found in the perch at game time rather than the suite, which is where he entertains. The perch is reached via elevator that goes only to the suite and the locker area. We toured the rest of the stadium, including the SRO space, one of the private clubs (which is accessible only to the club suites holders), and the end zone seats. At one of the end zones, you can look out the windows of the stadium and see the Rangers Ballpark. I got a good shot of that. There is a fountain in this area, and Ford has a huge display of cars here. We went to the Cowboy Cheerleaders locker room, and got to see their lockers and their pictures, except for the pictures of the captains. Apparently, after the season, the captains are treated to a banquet and are given their pictures. Our guide told us which cheerleader had been knocked down during one of the plays next year, which one had been dating a Buffalo Bill, and which was the first black cheerleader, and which two were sisters. She also told us that if we wanted to take pictures of the cheerleaders' pictures, we had to pose like that cheerleader. So of course I posed! We could be twins separated at birth. NOT! From there we went down to the actual playing field. The Cowboys were through with practice, so the field was all ours. We walked on the 50 yd line, I posed lying down on the number 50 (think I'll title it Help I've Fallen on the 50 Yd Line and I can't get up), took a picture of Ramiro holding up his arms to signal a touchdown right under the goal posts, and got a picture of him standing on the number 50. We waited and waited for the locker room to become available, but apparently the boys took their time showering and dressing because they did not open the locker room for us. They had told us when we bought our tickets that the locker room would not be open, but we sort of hoped that they might. After the tour we went to lunch, as we were both pretty hungry. We decided to try th Panda Express, which we've heard lots about. I had a fried rice bowl with kung pao chicken and Ramiro had a lomein bowl with orange chicken. It was OK, but we won't be going back. PeiWei has spoiled us. While we were at the stadium I heard fro Sarah Walls, an environmental attorney in Ft. Worth who served as outside counsel for the airport. We are supposed to meet her for drinks after work today.

Lunch with ARCO friends

Ramiro and I went to Pappadeaux's Seafood in Arlington today to have lunch with former colleagues from the ARCO legal dept.--Steve Molina (former head of litigation); Bill Keffer, whom I hired to work in the Environmental Group; Ross Lind, Legal Dept. private investigator, and Norma Rosner Iacovo, who was in the FERC regulatory group at ARCO then went to Vastar when we spun off that asset. Molina is now a partner with SNR Denton, a large law firm headquartered in D.C. He still does international energy law, and travels extensively to the middle east and latin america. Keffer has his own firm; not quite sure how many other attorneys he has. He's also running for state rep. He won a term in 2002 and 2004, then lost in 2006. He's in a runoff on July 31. Norma is associate general counsel for regulatory (FERC) matters for a company called Tenaska, which is a privately held gas company with assets in Nebraska and Texas. It is actually HQ'd in Omaha, so Arlington is a 200 person satellite. She was as stiff and unfunny as ever. Actually, everyone was the same as before. Molina was in his element telling stories about everyone we remembered. Keffer of course brought up the NORM litigation that he's been trying to interview me about. I've told him repeatedly that I really don't remember any details but he is going to mail me a notebook with a timeline and a questionnaire to fill out and send back to him. I told him to send it to me in Arkansas because I don't want to lug it back. The most interesting information was about Mark Sheets and Mark Wilson, the two guys who worked for Kratsas (Head of the Env. Technical Group, and Debbie's old boss). The Marks were Industrial Hygienists, specializing in NORM and radiation. Keffer has been looking for them because they were instrumental in developing our NORM program. But they seemed to have disappeared after ARCO was bought up by BP. Turns out that Wilson is in the state of Washington, still working, and still the same as ever, according to Keffer who actually visited with him. Not so good about M Sheets, who was reported as having died from a stroke by several people. However, according to Keffer, Sheets is in the Chicago area living with his elderly mother, but can't tell who's taking care of whom. Sheets had a huge stroke that left him unable to get around well. Keffer said it was shocking to see how bad Sheets looks now--instead of his tall, slender self with military bearing, he said that he's slovenly, straggly beard and hair, decidedly overweight, and generally giving the appearance of low self esteem. Keffer spent most of a day with him, and said that Sheets seemed very appreciative of having a professional conversation about a topic on which Sheets is an expert. I imagine those conversations are few and far between for Sheets now. I was very sorry to hear about that. Lillian Fouche Kirstein was invited to the lunch, but had some excuse about why she couldn't make it. She's working for 7-11, and there was a lot of teasing that she's pumping gas and slopping Slurpees. Molina said that he twice asked her why and when she'd gone to 7-11 and what she was doing for them, but Lillian either didn't respond or gave him some non-sequiter answer. Something tells me she's fallen down on her climb up the corporate ladder. Lillian's husband Brett was a partner at one of the big 8 accounting firms, but the firm disbanded after the Enron debacle because they (the firm, not Brett) got caught not having followed good accounting practices that would have disclosed to the public and the SEC what Enron was up to. Brett lost all his pension, 401K, etc. when the firm failed, and had to start all over again. He'd been with them something like 8 years, so that was a serious loss. It was a big blow to Lillian, who had big dreams for him. I remember one time when they were only engaged that she got very upset with him because he told her that he figured he would top out at $100,000 a year (that was a lot of money back in the 90's), and she kept badgering him to set his sights higher. He finally calmed her down by saying "would you feel better if I said that I'll try for $200,000?" She had to be satisfied with that. Molina said that Lillian's 2 boys are enrolled at St. Mark's (Episcopalian). Wonder how she got around Brett's desirre to raise his childlren Jewish? Of course, as Lillian would always tell you, she wanted them to be raised as Christian because Jews could not go to heaven. Some of Lillian's friends from Baylor actually asked her how she could marry a man who would go to hell and she would not see him in heaven.

June 12, 2012

A fairly non-eventful day. We got up at 7, instead of 6 (on clinic days), had coffee that Ramiro made, then eventually had breakfast at home. We walked around the complex (25 min), then showered and changed clothes. Ramiromtook me to look,for a Payless shoes so,I could buy a pair of sandals appropriate for some of the clothes I have here. All I have with me ate my gold Naot sandals, some flip flops, and sneakers. The Naots are starting to feel too big because the steroids have had an anti-inflammatory effect on me and my feet feel as if they have shrunk at least half a size. My rings are too big, too, for,the same reason. After a quick stop at Ulta to buy brow color, we went to the Payless at the mall, then to Luby's for lunch. Finally to Walmart for a few groceries, and then home. The weather was breaking and a thunderstorm was rolling in. We got lots of lightning and thunder, a few drops of rain but no more. Most of the rain seems to,have been south of us, toward Burleson. Spent the afternoon reading. Yesterday I went to the little "lending library" at the transplant floor of the hospital and borrowed two books. While there our apt neighbor (wife of a kidney transplant patient from Austin) told me that the 7th floor has a more extensive library. She was on the 8th floor saying goodbye to,people. They have been discharged after a three month stay (standard for liver patients) and they are going home. This morning I saw Howe taking stuff out to,their car and also,taking things to another neighbor who is also a liver patient. The second patient is from Pampa, and he has about one more month to,stay here. Mae met Botha purples the day that we moved in, and at that point the Pampa couple had been here a month. That was 4 weeks ago, so,he's been here 2 months. His wife looks as if she was burned in a fire. She has scar tissue all over her face that looks like a skin graft. She's nice looking, so,I,imagine she's had lots of plastic surgery to,reconstruct her face. She told me that her husband had gotten ammonia poisoning of the brain when he was still at home, and she tookmhim to the local hospital. She wanted the doctor to call the Baylor nurse that was her contact for the transplant (the man was listed at that point), but the doctor kept saying, I'm a doctor, why would I call a nurse at another hospital? Ugh! He did, eventually, and of course the Baylor nurse immediately knew what to direct him him to do. But after that incident, the wife decided that they needed to move to Austin with her sister so that he'd have access to better medical facilities and also be closer to Ft. Worth. As it was, when he got the transplant call, he was so,sick that he could not travel by car and had to get ambulanced up here. I think the wife's name is Mary, but I don't know his name or the name of the Austin couple. We are supposed to have lunch with the ARCO crowd at Pappadeaux's in Arlington tomorrow. it'll be Steve Molina, Ross Lind, Norma Rosner, maybe Lillian kirstein, maybe Bill Keffer. Patrick is doing to a golf tournament, and Jim Coffee is out of town would have loved to see them. At 5:30 p.m. I got a call from Tim Keefe, Transplant Coordinator. He said the earliest that I can get the PD catheter removed is Friday, June 15, at 11:30 a.m. That means I'll have to do clinic on Thursday, and that will also serve as the lab work for pre-op assessment. Then instead of going to clinic on Wed. of next week as originnally scheduled, I'm supposed to go to clinic on Monday for surgical follow up. That works out well because Monday I needed to go to the hospital for the 4th and last of the nutrition classes. Since I didn't have clinic that day, I was going to have to make a special trip to the hospital just for the class. This way, I'll do clinic and class on Monday, and hopefully be free the rest of the week until the following Monday. Dr. Marlon Levy (I'm Awesome) is doing the surgery.