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.

Clinic visit--June 11

Today being Monday, we had a clinic visit. I saw Tim Keefe, transplant coordinator (he rotates clinic duty with Bettina Herrera-Go) and Michelle, the physician's assistant instead of the doctor. Tim asked me about scheduling the surgery to remove my PD catheter. He said he'd talk to Dr. Ruiz (whom we met at Baylor Dallas during the evaluation process) about doing it sometime this week, perhaps on Thursday. Tim is supposed to call me back with the schedule. All my numbers continue to look great. My hemoglobin count has gone UP to 12.2, so it's clearly in the normal range. My creatinine has gone back to 0.5. I told Michelle I was glad to hear it because it had crept up to 0.7 last week. She said it's possible you were not as hydrated then. So, that's an indicator to me to keep up my water drinking. Except for getting up frequently during the night, it's not hard to drink at least 64 oz of water and whatever else I drink with lunch and dinner. I figure some days I drink about 80 oz of water. Michelle said that after this week, I can drop down to ONCE A WEEK CLINIC VISITS!!!! Yay! This is a step closer to going home. So, next week I come to clinic only on Wednesday. After clinic we went to our nutrition class, which was on food safety. Some new things have to do with not eating cold meats unless they are reheated! That includes tuna and chicken salad and cold cuts! Yuck! So I guess the days of my making tuna salad for the week, and taking a sandwich to work and letting it sit on my desk all day are over! Tanya, the nutritioniest, suggested using the 3 oz packs of tuna, making a one serving portion, then eating it right away. I love tuna and chicken salad, so that will be a change we have to make. We asked about going to a salad bar and Tanya said you need to make sure they change the food often enough, and skip the cold meats--the chopped ham (which I don't use), pasta/tuna salad, etc. I had some tuna/pasta salad at Sweet Tomatoes over the weekend, but only about a tablespoon, since I try not to eat much pasta. This evening we went to Mary Margaret Stubblefield's house and picked her up, then we all went to Charleston's for dinner. We treated her as a thank you for letting Ramiro stay at her house for the first two days that I was in the hospital. She really went out of her way to help him--cooked for him, showed him an alternate route to the hospital, etc. She is a very nurturing person, and can't do enough for you. At times I find it cloying, but she means well. We wanted to take her somewhere she had never been--easy enough, since she doesn't go out much. Every time we've asked if she's been to this restaurant or other, she's said no, but she's heard that it's good/bad/whatever from her co-workers. Why she doesn't join her coworkers in this outing is beyond me, but she likes her restricted life, and some of it may be due to finances. She works as a PBX operator (who know there were still such jobs!) for Dillard's warehouse. She's been there for close to 30 years. Her job and her house are a few miles apart, and she said that she's the only one that never misses work even in bad weather, because she can always drive in. After dinner we brought her to the apartment so that she could see how nice it is, and about 8:30 we drove her back home. A big thunderstorm was beginning to roll in, and she was very concerned that we not be in it. Also, her street is all torn up because it is under construction, and she was afraid that we could get stuck in it. Of course I had to call her once we got back to the apartment so that she would know we made it back safe and sound. See what I mean about cloying?

May 21-May 25, 2012 First Full Week of Clinic Visits

This week we go to clinic 3 times a week, Monday, Wednesday, and Friday. The clinic routine goes like this. We get up early and head to the hospital, lugging my big blue bag with the meds, my blue notebook, glasses, iPad, maybe something for breakfast, a big 28 oz jug of water, my kidney pillow to tuck into the seatbelt, and a jacket for me because the clinic waiting room gets rather chilly. We check into the clinic around 7 a.m. and wait to get called for blood and urine tests. I usually have a one hour wait before I get called. The earlier you sign in, the earlier you get called. So, we start leaving a few minutes earlier each visit, trying to beat the clock. After you get blood drawn and give them a urine specimen, you get asked if you need to see the doctor. I figure I should say yes, and the nurse signs me into another waiting list. Now we are free to go the breakfast and take my meds at 9 a.m. (within a 30 min. window). We head back out to the waiting room where I sit while Ramiro goes to Starbucks to get us coffee. Then we pull out whatever we've brought for breakfast and eat in the waiting room. We see other people doing it too, although quite a few head out to the cafeteria. We're not sure how much time we have before we get called for the next part of clinic, so we don't want to go the cafeteria and run the risk of not getting back in time. Our fears are groundless, since it usually takes about another hour to get called for the second part, which is a meeting with a nurse to go over the meds you are taking, and also a check of vital signs and weight. The vitals lady asks if there is any pain (no). She takes my temp (normal) and weighs me. On Monday, May 21, I'm down to 110, a lot closer to my old weight, and I'm able to hope that I may be able to get into my regular clothes at some point. My legs are still somewhat swollen, but nothing like they were last week. After vitals, weigh in, and med check, we either get sent to an exam room to wait for the doctor or get sent back out to the waiting room to wait for an exam room to become available. When I see the doctor, he asks about the incision, checks it for seepage, redresses it, and listens to my heart and lungs. Everything is clear and good in that area. Then he goes over the blood and urine test results with me--blood sugar, blood pressure, temperature, creatinine (the holy grail of this quest), phosphorus, potassium, sodium, calcium, etc. Everything is great he says, my creatine is 0.6, a great value. This first week goes like that--all the values stay in the normal range. Of course, at home I'm required to test my blood sugar 4 times a day (fasting, pre or post lunch, pre or post dinner, and bedtime. My fasting numbers are in the 70's and low 80's; my bedtime numbers are acceptable, it's my pre dinner numbers that are high--in the 200+ range, and these scare me. But I don't take the glyburide because I've been instructed to take it only if the fasting number is 120 or higher, which it never has been. At home I also take my blood pressure upon arising, at bedtime, and at random times of the day. My numbers at home are quite low--in the range of 110/50! My temp is also on the low side--97.5 or 97.6. I usually run a little cool, so this is not unusual, it's my normal. So ends the first full week of clinic visits. We don't come to clinic on Monday because it is Memorial Day and the clinic is closed. The doctor says that since I'm doing so well, I can come just twice next week, he won't ask that I come in on Sunday, like I had to do yesterday. Good, we get a little reprieve from he early morning.

June 4, 2012

Third week of clinic. i only have to go twice a week now. We arrived shortly before 7 a.m., sign in and wait to get called. We see Carl Burnett, a man who had a kidney transplant from his daughter on May 8, a week before I had mine. He apparently is driving already (he lives in Keller) and arrives by himself. We also see a young woman we had not seen before. She already has the full face and chubby cheeks that are the trademark of steroids. Will I look like that soon? We hear her tell someone that she had her transplant on March 29, so she's had it 2-1/2 months. A man from our apartment complex, who had a liver transplant about a month ago is at the clinic with his wife. She tells us that today they hope to find out whether his pro-crit shot is working and that his blood count rises. If not, he will need a transfusion which they'd rather avoid. I hear the man tell someone else that he doesn't feel very good, and other man suggests that perhaps a shot of vitamin B12 may help. I get called for blood work and a urine specimen around 8 a.m., and after that we go to the cafeteria for breakfast. I get scrambled eggs, a bagel, and starbucks coffee. Ramiro gets scrambled eggs, a whole wheat biscuit, home-fries, a sausage link, and starbucks with cream. We eat quickly and then I take my day's first quota of meds. We go back to the lab to wait to see the doctor. Around 9 a.m. I get called in for vital signs--blood pressure (137/63, much higher than it was at home--107/45), temp (97.7), I'm asked about my pain level (zero), and I get weighed: 105.6 I seem to remember that I was 105.4 last week--has the weight gain started? Or was it that wonderful pot roast we had at Margaret's house yesterday? We're asked to wait for Morgan, who will go over my meds with me. that consists of me telling her the number and dose of the pills I take, and she checks it against her list. We agree and I'm done with this part of the visit. Apparently an exam room is not ready, so we go back out to the lobby to wait to see the doctor. When we finally get called in, it's Michelle (P.A.) who comes in. She listens to my heart and lungs (everything sounds good), then looks at my incision and decides to pull out the staples. They mostly come out easily but two of them hurt as she pulls them out. She decides to leave the bottommost two in, but tells me to remind the doctor on Friday to take them out. She tells me that my creatine level is 0.6, really good. All my other numbers are good also, so no recommendations or changes. We're done with clinic, but we have to wait around for the nutrition class that starts at 11:30. We decide to go to the Courtyard Pharmacy so I can pick up some diabetic test strips. I got a prescription from Michelle so that insurance can pay for them. Unfortunately, Courtyard Pharmacy is not authorized to bill Medicare directly for diabetic testing supplies, and he recommends that I go to Walgreen's or CVS, which can bill directly. So we walk back to the hospital lobby to wait for the class. The class is called Learning to Live the Lean Life, and has to do dietary measures to prevent cholesteral and heart problems. Not much new information, but that's beause I've been through diabetes education classes, which touch on the same thing. No skin on chicken, don't fry food, use olive or canola oil if you must use oil, eat avocados, nuts, fatty fish like salmon and tuna (but it takes 3 servings a week for it to be effective!) for the good fats, use only nonfat dairy, limit whole eggs to 4 a week or use egg whites/egg substitutes. Yada yada yada. This is how we eat when we are home, so it will be easy for us to follow this regimen. I am worried about how Ramiro is eating here, because he's enjoying the variety of restaurants we've been trying out. I'll have to get him back on the straight and narrow once we're home. We stop at Walgreen's on the way home, where we get a lot of hassle about who wrote the prescrption (they cant decipher the signature) and I can't either. I tell them I see Dr. Yango or Dr. Fishbach at clinic, and they decide to go with that. But they don't have two packages of the strips I need, so I get one and will get the rest tomorrow. I need to find a mail order place that bills Medicare directly so that I can get them at home without a copay and without this hassle. I took the chicken thighs that my sister used in the lemon pepper chicken and chopped them up. I put them in a skillet and added some water and a little hot sauce. (the rice she made was nasty--she added so much water that the rice got mushy and she had to overbake it to dry it out). I threw out the entire 13" pan of rice. I popped 4 corn tortilla tostadas into the toaster oven that Ramiro brought from home while Ramiro mashed a ripe avocado. I chopped lettuce and tomatoes and fixed us chicken tostadas with avocado. I spread a thin layer of refried beans on my tostada, then the guacamole, topped it with chicken and lots of lettuce and tomatoes. It was delicious! Right after lunch Ramiro did the laundry, and we spent the rest of the afternoon just resting. Ramiro took a nap; clinic mornings start early for us.

Sunday May 13, Waking up in ICU

I woke up in ICU aware of three things--I was unbelievably cold, Ramiro was there, and my bad breath was gone. I kept asking for more warm blankets, and eventually got 8 of the straight out of the warming oven, but all to no avail. Finally, one of the nurses took a warm blanket, rolled it into a cylinder, and wrapped it around my head and shoulders. Ramiro said I looked like an Eskimo baby, but it seemed to do the trick. The nurses had been trying to take my temperature, but it didn't register either in my mouth or under my arm. I think they deliberately lowere the patient's body to minimize bleeding, but I had trouble warming up because I am so anemic. I learned later that they gave me a unit of blood before the surgery; my hemoglobin count was 8.6 (normal is closer to 12). First transfusion I've had in my life. I kept trying to check my breath to see if the absence of the uremic breath was real or just temporarily masked. I tried breathing through my mouth, my nose, breathing deeply, breathing hard--my breath as sweet! I did get a wave of nausea, and was afraid I'd throw up, but they gave me something through the large IV in my neck--of which I was quite aware--and that seemed to calm the heaves. Not an unsual syptom from anesthesia, I was told. I drifted in and out of sleepiness, but was aware of how large my room was, and the fact that they let Ramiro stay there with me throughout the day. Not like the old ICU where they shooed family out except for 15 minutes at a time. I know that my friend Debbie called, and Ramiro passed me the phone, much to her surprise. I don't remember the conversation, nor do I remember talking to my sister. As I'd been told, I was extremely bloated from the waist down. My legs and feet were so swollen they were all the same size--you couldn't tell where leg ended and ankle began, or where the ankle turned into the foot. I oould not bend my knees for the swelling. My skin was so tight it was shiny. I was swollen in the abdomen and midriff, enough so that I had trouble breathing deeply. However, I notied that my toes did not cramp like they used to. Another symptom gone. I sent Ramiro home around 8:30, and he drove to Mary Margaret's house on the NE side of Ft. Worth. She is a friend of my childhood, and she was kind enough to offer Ramiro a place to stay--and offered to have us both stay with her once I'm out of the hospital. But it's enough that Ramiro will stay with her; I will need some space and privacy once I'm released. I spent the rest of the night trying to sleep, but it was mostly futile. The ICU is noisy and active, not conducive to sleeping for any length of time. In addition to the Foley catheter, the IV in my neck, two IV needles in my left wrist, one in my right wrist, and EKG wires all over my chest, the nurses and technicians constantly come into the room t conduct other checks--vital signs, check the IV bags, ask how you are, etc. Every entry requires them to turn on the overhead lamp and ask you to state your name and date of birth. They need to be sure that the patient is the one that the paperwork says it is, but it gets mighty dang tiring. At 4 a.m. I was awakened for my sponge bath! Not a time I'm ordinarily interested in a bath, or anything else but sleeping, but the nurse on duty had it on her list of things to do before she quit her shift. So she woke me up and by rolling me back and forth, was able to get my gown off, and wipe me with a damp cloth. She managed somehow to change the pad under me too, although my incision is such that I'm not supposed to bend at the groin, so I could not help her much. I couldn't bend my knes beause of the swelling, so I just sort of lay like a beached whale and let her do what she could. Then I was allowed to rest until 6 a.m., when the whole new shift came on duty, and all the checks and tests and blood draws began in earnest.

Friday June 1, New Dining Experience

A few days ago Ramiro saw on the news about a "food Park' that is comprised of food trucks that gather at a particular location every night. We decided to check it out because the weather is very pleasant--cool and dry. The food park is located behind the 7th Ave. Target Store, on Weisenberger St. We drive north on University to 7th street, then drive around until we see the Target. We found the food park easiy. We parked on the street and walked to the off street location, which consisted of a large lot with two long parallel driveways separated by a gravelled courtyard on which there were two rows of picnic benches. There were strings of white ligts across the courtyward, but these were not lit as it was still quite bright. We decided to walk the length of the drives to see what the trucks were selling. The first truck was for RedJett Sweets, apparently a local cupcakery. The chubby blond selling the confections seemed fond of her creations--chocolate, red velvet, vanilla cupcakes mounded with gobs of creaamy icing. We decided to push on. Next was Gepetto's Pizza, which also served pasta with meatballs and salads. Next to that was a BLT Truck, which served about 10 variations on the bacon, lettuce and tomato sandwich, some featuring cheese like gorgonzola and roquefort. This was next to a permanent building that housed the bathrooms. Clearly a customer-friendly evironment, and conducive to having people stay for a while. Across the courtyard from th bathrooms was another permanent building that dispesed all the alcoholic drinks--lots of local handcrafted beers, various wines, and mixed drinks like margaritas and mojitos. One would have tasted mighty good, but I can't have alcohol, at least not for now. Working our way back to the entrnce, the next truck we saw served ceviche, fried fish, and shrimp. I can't have cevice (or ANY raw food), so that was out of the question. Next was The Drifting Bistro, which served steaks, burgers, and fries. This was followed by the Grilled Cheese Sandwich Truck with its 10-12 variations on the classic. They also sold tomato soup, which would have bee wnderful if the weather were a little cooler. The last truck was called Salsa y Limon, and billed itself as serving "tacos con todo." We decided to try this truck. I ordered an "El Capitan," which was a taco on a flour tortilla made with grilled skirt steak, grilled onions, pickled cabbage, and a sprinkling of cilantro. I ordered a side of rice and beans. Ramiro ordered a skirt steak quesadlla, which came with rice and beans. After e got our food, Ramiro got us some hot sauce, and I sprinkled some on my taco, not knowing exactly how hot it was going to be. Fortunately, it was just right. The taco was pretty tasty, if somewhat small. Ramiro's quesadilla was good sized. Apparently it is "first come, first to park" for the trucks, and I understand that the mix of vendors is different each night, depending on who gets there early enough to get a parking slot. We ate our food and enjoyed people watching. We were sitting by ourselves at a picnic table, but eventually a young couple slid into the other end of the bench. She was a scrawny young woman with bad skin and rather homely. He was a decidedly middle Eastern type--dark skin, dark hair, dark eyes. She fawned on him and was clarly much more into him than he was into her. They sat there for a long time without ordering any food, but she was so glad to have a date that she would have starved first rather than ask for anything. I heard her ask him "So what's the game plan for tomorrow?" I though she was asking about their plans, but he answered that his parents would be arriving about 8 a.m., picking him up, then they'd all drive home. She answered in the parlance of the young: "That is so awesome!" As I said, she was clearly more into him than he was into her, and she would periodically extend her arm all th way across the picnic table toward him. He kept his arms close to his chest, although at one point he covered her hand with his. She immediately turned her hand palm up and grasped his his hand, which he immediately withdrew. She left her arm extended toward him, but he did not repeat his gesture. She did eventually retract her arm, although throughout the evening she would extend her arm toward him futilely, as it turned out. At one point he finally got up and brought back two grilled cheese sandwiches. After he sat back down he asked, as an afterthought, "Do you want something to drink?" to which she answered no. She ate her sandwich in dry gulps. Her attention was somewhat deflected from him by a young man who was carrying a beautiful blue-eyed blonde baby girl. The scrawny girl started cooing at the baby and said somethimg to her date. Without bothering to turn to look at the baby, he rewarded her with a sneer, as if to say "Don't get any ideas." I thought "you're not getting a baby that looks like that from THIS young man," but I kept my silence. The next distraction was the arrival of about 15 young women, all carrying paper fans. One was wearing a pink sash aross her chest. I surmised it was a bachelorette party, and eventually the sash-bearing woman turned to face us and I could see the word Bachelorette emblazoned in rhinestones on the sash. Scrawny craned her neck to get a better view, and again commented to the young man about a wedding party. The one-expression guy rewarded her with another sneer. Limited repertoire of responses. I was surprised to see how many of the women in the bridal party sported tattoos--full sleeves, entire leg, across the back, neck and shoulders. Such beautiful skin marked by hideous skulls, crosses, chinese characters, flowers, etc. The crowd was an odd mix of old, young, single, married, etc. We saw an old Horned Frog (TCU mascott)--an old guy wearing purple and white (TCU colors) from baseball hat to shirt, shorts, socks and shoes. This being Texas, there were a number of women wearing frilly sun dresses, high heels, and tons of makeup. Then there were the society matron types--wearing expensive leather sandals with matching handbags, skinny white jeans topped with flowing silky tops that were large enough to hide a multitude of flaws from flabby belllies to jiggly bottoms. Of course, arms, necks, and fingers were bedizened with gaudy jewelry. Lots of teenagers, lots of student types wearing jeans and t-shirts. We saw one couple about our age; they got cupcakes and margaritas, then sat down to play with their separate phones. Periodically one would share a pic or message with the other, but for the most part, each was lost into his/her own technology. As good an excuse for not talking as any other.

Waking up in ICU

It seemed like only seconds later that I was being awakened by nurses and doctors. I was cold, and kept asking for blankets. Eventually they had to pile on 8 blankets straight out of the warming oven. Even so, my body temperature was not high enough to register on the thermometer, either orally or in my underarm. One of the nurses then took a warm blanket and rolled it into a cylinder, which she positioned around my head and shoulders. Ramiro said I looked like an Eskimo baby. However, that seemed to do the trick, and I began to feel warmer. I think they deliberately cool you down during surgery in order to minimize blood loss. However, I am so anemic that I don't warm up easily. As I roused out of the anesthesia, I became aware of three things besides the cold. First, Ramiro was allowed to stay with me, even though I was in ICU. Secondly, I could definitely feel the bloated condition of my legs and belly. Third, the formerly present bad breath was gone. I tried breathing deeply, breathing through my mouth, breathing through my nose, breathing into my hand, but no bad breath. The bad breath had developed about a year ago. At first it was intermittent, but later became a constant. It is called uremic breath, and stems from the uremia, the high concentration of urea waste products in the blood stream. The body can't push the waste products out in the urine when the kidneys are damaged, so the body sends the waste products out through the breath, the skin, and through vomiting/nausea. It's hard to describe the bad breath, but the closest would be soething ike the taste of old blood, like when you have a tooth exracted and the tooth cavity develops a large blood clot that you have to leave in place until it slowly decomposes. It's hard to find food appetizing when you have the taste of old blood in your mouth constatly. Occasionally I had the generalized skin itchiness that signaled that I was excreting through the skin, but that was not constant yet. I remembered that uremic breath and the skin itchiness were two of my dad's symptoms before he was diagnosed, so that tells me how sick he was before his condition was fully assessed. At times I had frequent nausea, but that had become less frequent in the last month or so. Mostly the nausea and bad breath would be very pronounced when I ate any kind of protein. To avoid getting sick, I mostly stuck to a carb and vegan diet--bread, pasta, veggies, fruit, and only occasionally a piece of cheese, or some yogurt or a boiled egg. Tuna salad was a real treat, but the portion had to be small. I estimate that I was eating less than 3 oz of protein a day, and most days only an ounce a day. By evening, I was pretty well out of the anesthesia, and felt alert and awake. I periodically checked my breath, but it remained sweet. The bloating was very uncomfortable. My skin was so tight I could not bend my knees. I looked at my feet and they looked wide and full and my ankles were absent, they were the same size as my feet. My friend Debbie called Ramiro, who gave her a progress report, then surprised her by saying, "here, I'll let you talk to her." My sister called as well, but I don't much remember about either conversation. I made Ramiro go home about 9 p.m. He is now staying with my friend Mary Margaret Stubblefield, a childhood friend from first grade. She was gracious enough to open her home to him, and I know that he'll appreciate being in a more home like environment instead of a hotel where he'd be all by himself. I worry about him driving out to a unknown location in a town he's not familiar with, but he promised to call when he gets there, and it's not long before he does. I tried to sleep, and would have except for the nurses coming in practically every hour to check on something--vital signs, the level of urine in the Foley box, check the bags of IV fluids, meds, and of course to draw blood. So ends the first day with my new kidney.

At Baylor Hospital

We decided to go to Dallas for the weekend, especially because we wanted to see our nephew Eddie Caballero's baby girl Felece. Friday night we went to dinner with Ramiro's sister Connie and her husband. We went to Aw Shucks where I had the steamed crab legs. Yummmmmm. This morning (Saturday, May 12) we were getting ready to go to breakfast, when we got a call from Bettina Herrero-Go, the transplant coordinator at Baylor All Saints in Ft. Worth. They were scheduled to get a kidney from a 27 year old man with no known health issues. I was directed to go to Baylor in Dallas for the tissue-typing blood work, then told to go to Baylor All Saints in Ft. Worth. I had the presence of mind (or stomach!) to ask Bettina if I could eat breakfast first. I figured that once I got to the hospital I might not get solid food for several days. She suggested that I have a light meal, because I might be having surgery later that day. Ramiro and I were staying at the Country Inn and Suites, which serves a complimentary breakfast. We went down to the breakfast area, where I had some fresh fruit and got a blueberry muffin and coffee. I nibbled at the muffin, but could not eat it, although I did eat some fruit and had a cup of coffee.Then we went off to Baylor Dallas with my hospital bag. We had been to Baylor Dallas for the evaluation, so we had a good idea of how to get there. According to Bettina, I should go directly to the lab and they should have the order telling them what blood work is needed. Ramiro dropped me off at the right building, and I asked the guard where the lab was. He had never heard of the lab that Bettina mentioned, although from his desk I could see a sign with an arrow showing the way to the lab. He made a phone call and got directions for me, then proceeded to tell me, with lots of hand gestures, how I was to find the elevators that would take me to the lab. At the lab, I signed in, only to be asked for my paperwork from registration. Of course I had none, and I was told that I needed to go downstairs to register. A black lady told me "we're gonna take care of you," and said she would take me to registration. She did, and then left me there after making sure that I knew the way back. The registration process was not too bad, it mostly consisted of my having to show insurance documents. I was asked who was my doctor, and all I could remember was that Dr. Melton had been the transplant evaluation nephrologist, so I wrote down his name. After registration, I went back upstairs to the lab, where I sat and waited for a while. Finally, they called me, and the same black lady I had met before did the blood draws. She told me she would be taking 21 vials of blood, and warned that when they draw that much, it is not uncommon for the vein to collapse, in which case she would need to find another vein. I did not relish that idea, but my vein held. We made small talk during the procedure, and it helped me pass the time without being overly aware of the tube after tube she kept filling. I didn't feel woozy, but I did feel kind of funny when I left the lab, whether from the amount of blood drawn or from the fact that I know I am on the brink of a life-changing event. Ramiro was waiting for me where I had asked him to stay so I could be sure to find him. As soon as he saw me, he commented that I looked dazed. I told him they had taken 21 vials of blood, and he said that must be the reason for it. We started out for Ft. Worth, and I pulled out the map and directions that Baylor All Saints had send me. I had packed it in my hospital bag in case we got a call from them. We kept thanking God for having given us the foresight to do these things. We were grateful that we did not have to make this drive in the middle of the night, or with a real time crunch. The weather was clear and dry, and we knew we had plenty of time to make it to the hospital. Had we stayed in Arkansas this weekend, we'd be driving from there, and I'm sure our focus would have been on simply getting here in time. As it was, we could be a little more relaxed, although we didn't feel that laid back. We got to the FW hospital around noon. Bettina had said that I should go to the emergency room. We did, and as soon as I signed in and said I was called for a transplant, the registration lady took me to a little side room. She knew who I was and what needed to be done. The paperwork took a long time because the hospital just switched to a new computer system, and no one was familiar with it. After registration, I was given the option of being taken to my room in a wheelchair or going under my own power. I skipped the wheelchair! My room was on the 8th floor, Room 16. It is very large (a suite, in fact) and very bright and nicely appointed. I was directed to get into a gown and get in bed. So far, I've seen the physician's assistant for the transplant doctor, a nephrologist (Dr. Rice. A black woman), the anesthesiologist. I've had an EKG, a chest X-ray, lots of blood work. Still have not met the transplant surgeon. At first I was told that I could not eat anything the rest of the day because surgery could happen that night. Then a nurse said that the surgery would not happen until Sunday morning because the organs were only then being harvested. She said the heart would be harvested first, then the liver and pancreas, and the kidneys would be last since they could be put on a pump. She agreed that I could have a regular lunch. Ramiro went to the cafeteria and got me a grilled chicken sandwich at the hospital cafeteria. It was really good. Maybe I was just hungry; I'd long ago had the fruit at the hotel. My hospital dinner was jello, chicken broth, a Popsicle, and apple juice. No telling when I will have real food again. Still don't know if this is a real go for the surgery. The "clump test" to determine compatibility is underway. I told Ramiro to go home around 8 p.m., so that he can get (hopefully) a good night's rest. There's nothing for him to do at the hospital, and I am perfectly ambulatory and able to get up and go the bathroom if needed. 11:00 p.m. I understand that the blood results are all good. Surgery is scheduled for 8 a.m., maybe a little earlier. I've had a shower,with antibiotic soap. At 4 a.m. I am to have an enema and another shower. My brother Felipe sent me a text saying "the kidney is moms' mother's day gift to you." it brought tears to my eyes. And then it made me sad to know that the mom of the donor is going to have a really sad mother's day No more facts to write. I'm nervous about what life will be like after the transplant. Dr. Rice, the nephrologist I saw this morning, said that at least for a while, I will feel worse after the transplant than I do now, particularly since I am not on dialysis now and I've been living without too many limitations. She said that some people complain thatt they don't get their old body back for at least three months. One of the things she told me would happen is that once sedated, I will get a "large" IV stuck in my neck. That will be the access port for all meds, fluids, and blood draws. She kept describing it as large, and said that it will stay in my neck until I'm discharged from the hospital. She also said Ill have a Foley catheter so that they can measure and analyze the urine output and also to prevent all backflow pressure on the bladder. The reason to prevent pressure is that there will be a new incision into the bladder where the new ureter from the kidney will connect. The stitches to connect the ureter to the bladder are very fine, and they need time to heal. I remember that when my dad had his transplant, the ureter separated from the bladder, and although my kidney was producing urine for him, the urine was going into the abdominal cavity. They had to perform a second surgery to reconnect. Another thing for me to worry about. The IV in my neck needs to be large because they will pump large volumes of fluid into me, to ensure that the toxic products now in my bloodstream get somewhat diluted. Otherwise, the high concentrations could overwhelm the new kidney as it tries to establish itself in its new environment. She said they will force fluids at a ate faster than I can release, so I will be bloated and swollen from the waist down. She said to expect my skin from the waist down to be tight and uncomfortable from the excessive swelling. Dr. Rice's parade of horribles continued. She told me that I may have to take insulin or pills to control my diabetes, whereas now I control it with diet and exercise. She said I will feel heavier, and the drugs can affect moods, making depression more severe, meanness more pronounced, and other things that ordinarily are kept to oneself will come out. I worry that I will say things to Ramiro that I don't mean or that will hurt him. He has been so wonderfully kind and sweet all our life together, and I don't want to spoil the relationship. I don't want to be mean or unkind to him. I love him so much. If it were not for him, I would not have gone this far--I would not have agreed to dialysis or a transplant. Something else that Dr. Rice led me to ask when I would know whether the transplant was a "go." It seems that right now it is still "tentatively" scheduled for tomorrow. She told me that it is not a "go" until the new kidney has been connected and I've been sewn up. She said that the surgeon could open me up and decide that my anatomy was not correct for this particular kidney, or he could decide that the new kidney was not right for my anatomy, or could decide for any number of reasons that the transplant should not be made, and in that case they would just sew me back up without the new kidney. So, I could wake up from the anesthesia thinking I had a new kidney and all I'd have to show for it is a new incision! And this information is supposed to help me accept this process?

Second weekend in apartment, third week anniversary of transplant

The weekends are so welcome because we are free from clnic visits and the early morning trips to Baylor. Saturday I cooked eggs for breakfast and it was nice to eat a good breakfast and our own coffee at home instead of at the clinic. Sunday we went to church at Trinity Episcopal. This is the first Sunday that Mother Carlye will preach. She is the new rector of this church. This was Trinity Sunday, and she rejoiced in being called to Trinity Church on Trinity Sunday. After church we went to Mary Margaret Stubblefield's house for lunch. She fixed a wonderful pot roast with potatoes, carrots, and onions. Her sister Betty and Betty's husbnd Louis Cabrera were there. Apparently Betty and Louis live in Weatherford, which is about 40 miles away. They attend church in FW on Sunday morning, then spend the rest of the day at MM's house so that they can be there for the Sunday evening service. MM had to go to a NarcAnon meeting (her son is in a drug rehab program) about 2 p.m., so that left me and Betty have some time together. Ramiro took a nap and Louis did some handy man work on MM's little rental apartment which she has now rented out to a single man. Betty told me about an incident in which MM's son (James) almost burned her house down. James had a car that needed repairs, and had asked MM to buy the parts needed to repair the car. She did, and then got someone to help him fix the car. MM had something to do and so she left the two of them working on the car out in her driveay. At one point James went into the kitchen to fix something to eat. Apparently he put something in a pot on the stove, turned it one, and forgot about it. Eventually the pot burned and caught the kitchen on fire. The other man noticed that there was smoke coming out the kitchen and asked James about it. Instead of investigating, James just ran away and the other man was left to check things out and call 911. A neighbor called MM to come home because her house was on fire! Betty says that to this day she does not believe that James has ever apolgized to his mom or even mentioned the incident. What hopes has MM for this son? Betty said that since then, James has come to MM asking to stay with her when he's run out of places to crash, but MM has told him that she cannot trust him at her home, and has turned him away. That's the kind of strength that she draws from NarcAnon. Even Fletcher, James father (MM's ex husband) won't let him stay at his house, and the most he'll do for him is get him a hotel room for a couple of days when he has no other place to go. Apparently James was in a hotel room back in December when MM and her daughter (Margaret Mary) went out to lunch. They decided to invite him, and the outcome of the lunch was that James said he was ready to turn his life around. The daughter knew someone from her church that was involveed in a faith-based drug rehab program and told James that if he was really serious about making a change, she would help him get in. So that's where James is now. It's not in FW, but it's not too far. MM goes out to see him one Sunday a month. She attends church with him, and on that Sunday there's a pot luck lunch for the patients and their families. According to MM he's doing well, but Betty said that some weeks ago he told MM's daughter that he couldn't wait to get out of there because they direct his every move, tell him what he can and can't do, and he feels like he's in prison. Given the fact that he has not made good decisions on his own, I can see that he needs every step to be directed by someone else. But whether he will learn how to make good choices from this kind of rehab is not clear. It sounds as if he will break loose when this program is over. Margaret Mary is married to a second husband. When she was married to her first husband, she had a daughter named Jennifer. Jennifer got married March 30, and MM showed me the wedding pictures. Jennifer is blond and tall and slender and totally anglo looking. Her dad is anglo and she married an anglo, so MM's hispanic genes are slowly getting diluted out of that line. MM said that Jennifer is pregnant and MM will soon be a great grandmother! I noticed that in one of the wedding pictures that Jennifer's husband has his hand placed on her belly, and I sondered if that meant she was already pregnant. Later I would learn that the baby is due in August so she was clearly pregnant in March.

Second week of clinic visits

First week of 3 clinic visits

First weekend in apartment

We went to clinic yesterday, and had our first free weekend. It was nice to sleep a little later, be free of the hospital routine, and enjoy some time together. My sister stayed through breakfast on Saturday, then left for Houston. Ramiro and I stayed close to home, although we did go for a short walk around the tennis courts. All I have with me are my gold Naot sandals, and I wore those. Not the best for walking, so I'll need to have Ramiro bring me my Crocs the next time he goes home. I'm slowly losing some of the bloat, and feeling better every day. I've noticed that in the early afternoon I get a sort of general itchiness on my arms and legs. No hives, just a generalized itching. I don't know whether it's a drug reaction, a reaction to my skin being pulled so tight because of the bloating, or a reaction to the sun, which is pretty fierce. After only 3 days of walking in the sun, I noticed that I'm getting sun stripes on my feet! I've got to get some some screen. The antirejetion meds make me more susceptible to a lot of things, including skin cancer, so I've been told never to skip the sun screen. I just hadn't realized the sun around here would so quickly show up on my skin. My arms definitely look more brown! I've had no pain, no outward effects from the surgery or meds. I feel my strength returning, and I feel so much better than before the surgery! The nausea is gone, the bad taste is gone, and I've got a good appetite. Without the bad taste, food tastes so much better! I find that I am ready for each and every meal! I'm interested in being weighed on Monday, to see how much of this water weight I've lost. Sure hope I don't gain weight now that I'm on steroids and eating so well. Yesterday at clinic I'd lost down to about 110 lbs, which is a lot closer to my original weight. Still can't wear my regular clothes--the waist bands are too tight. A lot of the bloat is between my waist and legs. At home I stay in my jammies, and I wear adult diapers because I need lose clothing around the groin and the incision. By the weekend I seem to have gotten over the diarrhea, so that's a good feeling. The immodium did the trick!

Friday, May 18--first clinic visit

Thursday, May 17--discharge from hospital

This is the day I get discharged from the hospital. They took the Foley catheter our this morning at 6, and I'm told to tell the nurse when I first need to pee on my own. They want to note the time and the quantity. The nurse puts a plastic container, called a hat, under the seat of the commode. This allows the patient to sit and pee in the normal posture, and the urine is captured. I only wait about 20 minutes when I feel the urge. I go by myself, then tell the nurse, who praises me for being able to go so quickly. She says that sometimes, after having had a catheter for days, some patients lose the ability to detect a full bladder, which is not good. No problem there. I keep asking when I'll get the neck IV out, but I'm told it will be the last thing to be taken out. I get breakfast, which I was able to order, and it's lower in carbs than what they would otherwise serve. I've still got bad diarrhea, so I'm leary of eating yogurt or any kind of dairy, so I stick with eggs, coffee, and a few bites of bread. I asked for tomato juice, but skip because of the diarrhea. I had 8 bowel movements yesterday, and my bottom is sore and raw. It starts up again as soon as I eat. I mention it to the nurse, and again I'm only told that it's a side effect of the Myfortic, which should abate when the dose is lowered. Later in the morning I get a call from Courtyard Pharmacy; they need a payment method for my prescriptions which the doctor has called in. I give them my debit card number, and they say that they will have the prescriptions delivered to my room later today. When they arrive, they come in a huge blue bag, which will become my constant companion in the days to come. I take the blue folder that Bettina gave me (with all kinds of paperwork) and stick it inthe blue bag. I'm told that I must bring the blue folder and my meds to clinic every time. I go to clinic for the first time tomorrow. Even though I'm going home, I still get all the regular checks--vitals, heart, lungs--every few hours. And I get a glyburide tablet after my breakfast, to control my blood sugar. I'm happy to learn that I will not be going home on an insulin regimen, but told that I am to take the glyburide. Bettina comes in to go over my meds with me. There are ___ prescriptions on my list. Of course that includes one for pain (hydrocodone) and one for sleeping, which I don't need. I get prescriptions for Prograf in 0.5 and 1.0 mg doses, Myfortic (___ mg), Prednisone (1 mg. and 5 mg), Valcyte, an antiviral (__mg), Bactrim, an antibiotic (_mg), Mycelex troche to prevent "oral thrush", Phospha (phosphorus), Potassium Chloride, Famotidine (to prevent stomach upset), coreg, for BP control (12.5 mg 2x day), amlodipine (5 mg. 2x day) for BP control, simvastitin (cholesteral control, 40 mg), glyburide (___mg) for blood sugar control, which I'm told not to take unless my fasting blood sugar is over 120.

Wednesday, May 15--second day in regular hospital room

Tuesday, May 15, first day out of ICU

Tuesday morning I wake up in my post transplant room; it's room 14 on the 8th floor. It is large, in fact, it's a suite with a sitting area off the hospital room proper. There is a large cabinet for my belongings, a TV, room for 3 chairs in my room and a small couch (that pulls out into a bed) in the sittig area. Juanita comes about 8 a.m., just as the food tray is brought in: Good Grief! I get scrambled eggs, bacon, hash browns,a biscuit, butter and jelly, orange juice, coffee and yogurt! I haven't eaten solid since Saturday, so I know not to chow down on all this. The eggs worry me--every time I ate protein before the surgery, the bad breath and nausea would overpower me. So I'm a little leery, but decide I need to find out what's going to happen. I slice the bisuit open and spoon some eggs on it, season with salt and pepper and bite into it. It is manna from heaven!I take a couple of bites of the bacon, mindful of the high sodium and fat content. I stop afer a few bites of the potatoes, not wanting to take a chance on overloading my stomach. I wait for the nausea and bad breath, which never materialize. Later in the day, the dietitian Kay comes in to go over my new diet--4-5 eggs a week, protein at every meal, an extra 900 calories a day while I'm healing, lots of non-fat dairy, lots of fruits and veggies. I remind her that I'm diabetic and that I've always controlled it with diet and exercise. I note that the breakfast was high in fat, high in carbs. She agrees that the kitchen doesn't always make the most healthful choices, and tells me also that the massive doses of steroids (for immunosuppression) I'm taking will tend to elevate my blood sugar, which they will control with insulin. She even tells me that I may have to go home on an insulin protocol, which I will have to self administer. She says that medications for blood sugar control are likely in my future. Crap!

Monday, May 14--second day in ICU

Ramiro came in around 7:30 a.m. and told me all about Margaret's house, which he said would give me claustrophobia. it is an old house, and she has every inch of it covered with photos of kids and grandkids. Ramiro characterized it as a Mexicana house--the kind of house that our grannies had, with old furniture, every knick knack ever given to her, kids artwork from 20 years ago, all the kitschy souvenirs from vacations, and of course lots of religious icons, prayer leaflets, church bulletins, etc. Margaret is true to her roots. Although that's not exactly true because althugh her mother was fully hispanic and came from the same background as my mother (in fact, they were girlhood friends), Margaret's dad was an anglo man; hence her maiden name Kinney. My sister arrived around 11:30 and I sent both her and Ramiro to get some lunch at the cafeteria. My lunch was broth, decaf iced tea, jello, orange juice, and a popsicle. This was exactly the same thing I got for breakfast, except the jello and popsicle were a different color from the morning. Different color aside, they tasted the same. And when I took the lid off the broth bowl, it was empty! So the nurse made me some beef broth and brought it in a styrofoam cup. it was very salty, and I worried about all the sugar in the rest of the liquids and the high salt content of the broth. But, I needed to eat something, so I did. Of course my blood sugar readings were high, especially since I was hooked up to a glucose drip. I wondered whether they'd ever stop pumping fluids into me, but they didn't and I stayed swollen and uncomfortable. Around 10 a.m., the transplant team came in for "rounds." This included Dr. Marlon Levy, Bettina Herrera-Go, Kay (dietitian), Nicole the Physician's Assistant I had met Sunday), and a host of other doctors and nurses. Dr. Levy asked me how I was doing, and in good southern fashion i answered "Fine, thank you, and you?" To which he replied "I'm awesome!" I was so tempted to say "No, you're not," but decided that discretion was the better part of valor. Didn't want him to think that the steroids had already kicked in and I was going to be a difficult patient. He proceeded to tell me that the new kidney had already brought my creatine level down to 0.9, which is (at the high end of) normal. He said the transplant team had not seen such efficacy from a transplanted kidney so quickly after transplant. I told him that I could already feel an improvemet in some of my more noticeable symptoms. He noted that the kidney was working so well, that it was flushing out some of my minerals and electrolytes, like potassium and phosphorus, which are necessary for many functions in the body, including muscle response. He said that low potassium could lead to muscle impairment, which could impair breathing if the diaphragm muscle didn't have the right chemical balance. Because of that, he said he wanted me to stay in ICU one more day, until they got my minerals stabilized. He said that if I got into potassum or phosphorus trouble, ICU was better equipped to respond than the post transplant wing of the hospital. So, I'm here another day,it looks like. The nurses hook me up to bags of phosphorus and magnesium, and I get a shot in my arm IV with potassium. This shot stings and burns so much that I yelp in pain and the nurse decides to inject it into the drip line that feeds into the neck IV, where the fluids can dilute it somewhat so it doesnt burn. By the middle of the afternoon, I'm told that my minerals level has stabilied and I can, after all, be moved tothe post transplant floor today. However, at present there are no vacant beds on post transplant, so they are waiting for someone to be discharged, which is also supposed to happen later in the day. I figure I'll be up there by about 4 p.m. But no...dinner time comes and no one has said I'm moving. Ramiro and Juanita go down to the cafetria for dinner, and I get another round of Jello, popsicle, broth (chicken), juice, and tea. I ate the broth and the popsicle, and a few cubes of the rubbery jello, but I'm tired of this same fare and no interested in anything else. Ramiro and Juanita leave around 8:30; Juanita is staying at the Homestead Suites, and Ramiro is going back to Margaret's house. Tomorrow he is leaving for Arkansas to check on the house, try to take Grace the Cat to the kennel, and get our mail held for a month. I watch a little TV, doze off and on, and wonder whether they've forgotten about my move. But around 9 p.m. I'm told the move IS going to happen, but it won't be just yet. The nurses keep asking about my pain level, and keep reminding me about my self-administered pain relief button. About 10 p.m. I decide to give myself a squirt, hoping to get some sleep. I'm not hurting, but it may help with sleep. It does, but the nurses keep coming in and waking me up, so I decide to skip any more self dosing. At MIDNIGHT, the nurses come in to tell me that my room on the 8th floor is ready! I'm out of ICU!