May 13, 2013--one year anniversary

On Sunday, May 13, 2012, I received my kidney transplant at Baylor All Saints Hospital in Ft. Worth. It has been a wonderful year, full of recovering strength, a return to my old zest for life. The day of the transplant was also Mother's Day, and I still feel for the mother who lost her 27 year old son a few days before the transplant.

Ramiro and I have been reminiscing for several days, reliving the events from the time we arrived in Dallas for a weekend with his family, to the time I got the phone call from transplant coordinator Bettina Herrerra-Go on Saturday morning just before we went down to the hotel breakfast, to my having 21 tubes of blood drawn at Baylor Dallas, then the drive to Ft. Worth and the long wait on Saturday to find out if the tissue typing was a match. That Sunday was mostly a blur for me, since I was taken into surgery very early, met with the transplant surgeon, Dr. Onaca, and then spent the next three hours under anesthesia. The rest of that Sunday, at least until about 5 pm I just sort of dozed off and on.

Yesterday Ramiro gave me an anniversary card. It has been a hard year for him, although perhaps not as hard as the year before, when I was so sick all the time. After church yesterday, we went to breakfast and then came home, only to find out that Guero and Connie had decided to have a mother's  day breakfast at their home. We skipped it and instead we went to the Perot Museum of Science. It is a fantastic place! After the museum we went to Red Lobster for an early dinner. I had my favorite--Caesar salad with grilled salmon. Yummmmm!  I had been craving salmon since the day before, because we went to Christina's graduation (TWU) lunch at Jinbeh, a hibachi style Japanese restaurant. Guero ordered grilled salmon that looked soooo good.

One of the things I have noticed after the transplant is that I crave salmon more often. I've always liked it, but now it seems I think of having it more often than I used to. Wonder if the donor liked salmon?

Here is a picture of me taken yesterday.

Transplant Reunion

Yesterday (Sunday, April 14) Ramiro and I went to the Dallas Baylor campus to attend the 2013 Transplant Patient Reunion.  It was well attended; we figured there were maybe 300-400 people there. Of course that included family members as well as patient recipients, but it was so heartening to see so many long term recipients who seemed to be doing really well. I saw a man whose name tag indicated that he'd had a heart transplant 10 years ago. 

The reunion was well organized. When you walked in there was a line for the educational forum tent; that was where they were giving out freebies. As you walked toward the tent, people were handing out bottles of cold water. Just as you got to the tent, there were tables with spray cans of sun screen. The day was sunny and warm, although a cool breeze kept it comfortable. But the event was from 12:30 to 3 p.m., certainly the hottest part of the day. Glad it wasn't later in the year! Apparently they hold it in April because the first reunion in 1987 was held on the one year anniversary of the very first Baylor transplant.

After the education tent there was a food tent. They had hot dogs (flown in from New York by Barry Newman, whose wife had received a transplant at Baylor), shredded chicken bbq, low sodium beans (really good), corn on the cob, and apples for dessert. Elsewhere in the park they were handing out popsicles and ice cream, popcorn, cotton candy, and lots of water.

The theme of this year's reunion (apparently there is a different theme each year) was "Saddle Up" and all the volunteers were dressed western style and wore star badges designating them as sheriff! The Junior League of Dallas was presented with the Newman Award for service to the transplant program. Apparently when the transplant program first began, the hospital realized that its patients would be coming in from all over the US and would need assistance getting around Dallas, getting housing, etc. and the Jr. League stepped in to perform the volunteer work. The League bought a small house that was named Twice Blessed for patients to live in. Now Twice Blessed House in Dallas is an apartment complex not far from the hospital.

I saw Dr. Onaca there; here's the transplant surgeon who did my transplant. I introduced myself to him, reminding him of the date that he did my transplant. I don't believe he really recognized me, although he said he did. I'm sure he's done so many that he cannot possibly remember. I should have told him that I was the patient who had previously donated a kidney and later needed a transplant. That fact seems to stick in the minds of the transplant team more than anything else.

Photos of all the transplant patients were taken in groups--liver and pancreas patients, kidney patients, and heart patients. The photos cost $5 and will be mailed to us later.

While there we also met a couple from Austin that we met at Twice Blessed House (TBH) last year. Twice Blessed House is the apartment complex run by Baylor for its long distance transplant patients. Anyway, the husband received a liver transplant a year ago.They said that he is doing very well.

We talked to them about a couple from Pampa whom we also met at TBH, but our Austin friends have not stayed in touch with the Pampa couple either.

All in all it was fun and educational, and good to see people there who are doing well. Many of the patients were recognizable as patients because they had the "chubby cheeks" common to steroid use. We saw quite a few people whose ankles seemed to be swollen. Mine have begun doing that recently, and I'm very conscious of it, especially now that warm weather is here and I'll be wearing short pants and sandals. Small price to pay. My real worry is that it may indicate a problem with kidney function. I pray that it does not.

Bladder infection

Friday evening, April 5,  I felt a bladder infection coming on. I bought some over the counter azo, hoping that it was a bladder irritation and nothing more. We had invited Hector and Pam Caballero and Connie and Guero Caballero for a cookout on Saturday afternoon. Then Hector called Friday night and said that one of their little boys was sick with stomach flu and they were afraid to come over because of my weakened immune system. Saturday morning I knew I was wrong about it being a mere irritation; I was in full blown symptoms--burning, frequency, etc. I kept drinking tons of water and finally told Ramiro what my problem was. He took me to the Baylor (Aubrey) Emergency Medical Center. Dr. Gaidarski saw me, and was very conscious that I was a "high risk" patient when it came to bladder infections. The urinalysis showed signs of infection--leukocytes and nitrates--so he called Baylor All Saints Transplant clinic to confer with the nephrologist on call about what to prescribe.  I am allergic to flagyl and fortaz, which apparently rules out a host of drugs of choice. The final decision was to prescribe 500 mg of    once a day for 10 days. I started taking it that afternoon, and felt some relief by morning. All symptoms were gone within a couple of days, but I have continued taking the medication as prescribed. The last pill will be on Monday, April 15, tax day.

While we were waiting for the prescription, Ramiro called his sister Connie and told her what the problem was, and asked if it could be rescheduled, but she told him that on Sunday they were having a birthday celebration for her daughter Cyndy and we were invited. That was fine by us! But of course we had defrosted a bunch of steaks, chicken breasts, and sausage links, which Ramiro had to cook on Monday.  We've been eating like kings since then!

Wednesday, April 10 we went to Arkansas. Thursday I needed to take my car to the dealership about a recall notice, had a hair appointment with Robert James, and put in about 5 hours at the office. That night I attended the monthly gathering of the Sassies Quilting group; it was rather skimpy--only 7 of us there, and one of them was a guest. Apparently membership is dropping and even those still members are not attending each meeting. Kinda sad; it was a fun group, although the Thursday lunch group was much more enjoyable because it was a smaller more intimate setting, and the regulars were pretty faithful about going every week.

Friday I put in another 3 hours at the office, had a mammogram, and then we went to dinner at Hunan Manor.  I went for a walk around the golf course loop after dinner while Ramiro loaded the car for our return trip to Texas. 

The Arkansas house feels like a luxury hotel--lots of space, beautiful views, and the flowers and trees are budding and blooming. The hydrangeas are leafing out, but no flowers. The crabapple tree out front is in full bloom. The easter lilies apparently did not bloom; they must have frozen because they came up too early. They were already several inches tall in January before we left, and they have had some hard freezes since then. The highway between Ft. Smith and Fayetteville was beautiful--the dogwoods are beginning to bloom, and the redbuds were gorgeous.

It is Saturday, April 13, and we are back in Texas. Today is the 11 month anniversary of my transplant.  Tomorrow is the Transplant Reunion at Baylor in Dallas, and we have registered to attend. I hope to see some of the doctors and the coordinators there, plus some of the patients that we came to know during our time in the hospital and at the Ft. Worth Twice Blessed House apartment. 

March 21, 2013--first birthday with my new kidney

Today is my 69th birthday, and I am healthy and happy. It's been 10 months since my transplant, and except for a couple of minor glitches, all has gone very well.  In October of last year we went to my high school reunion, which was held in Salado, TX.  From there we went to visit my friend Debbie in Richland Springs, TX. She woke up sick the next day with severe nausea and diarrhea. I helped her in and out of bed, in and out of the shower, cleaned her face and took her water and 7-Up. We left the next day as she was still sick. We went first to Fredricksburg, where we had lunch at a German restaurant. Then we went on to Schertz, to visit Ramiro's brother Ruben and his wife Mary.  All of us went out to dinner with their daughter, Anna Dwarshus and her new baby, Carter. We ate at a Jason's deli. All I had was the salad bar, but somehow I felt that something was wrong.

A few hours after we went to bed,  I woke up really sick to my stomach. I had gotten Debbie's illness, apparently. I was sick all night long, and by morning I was so weak and sick that I got in touch with Baylor in Ft. Worth to ask if I needed to go there. They told me to go to the closest emergency room. Ramiro drove me to Northeast Methodist Hospital in San Antonio, where I was admitted because of severe dehydration.  I stayed there two days, and was discharged with a prescription for Vancomycin, an antibiotic to treat the C. difficile that had shown up in the lab tests. Getting the prescription was another story, which I'll describe in a separate post. I recovered pretty quickly from the dehydration--a couple of bags of fluids and I felt like my old self.

The only other glitch happened last month. I had a routine clinic visit scheduled for Wed., Feb. 20, which was the day before the start of my quilt retreat in Gainesville with the Dallas quilters. My friend Debbie was staying with us, having come in on the 19th.

A few days before the clinic visit I noticed that I was getting very tired and winded on our daily walk, and mentioned it to Ramiro because it was unusual for me to feel that way. The next day, after Debbie had come in, I got really dizzy and lightheaded, even though I was not doing anything unusual or strenuous. At one point I got so dizzy just walking around the house that I had to sit on the staircase for fear I was going to pass out. Anyway, at the clinic I was told that my hemoglobin count was less than 6, with normal being around 12. No wonder I felt tired and lightheaded.  I remembered then that several weeks before, during our move to Texas, I had noticed some dark stools, and the day we were at the clinic, they were absolutely black and tarry.  The result--I was admitted to the hospital, in spite of my protests that I wanted to go to retreat and would come back to the hospital on Monday. I would have persisted, except that Dr. Fischbach told me that this was a serious problem that could affect my heart if not treated promptly. So, I stayed at Baylor while Ramiro went back that night so he could take Debbie to retreat the next day.

I got two units of blood the first day, then the next day they did an endoscopy. On Friday they did a colonoscopy. The diagnosis is that I have a gastric ulcer, caused by the steroids.  I've been prescribed an antacid, and apparently ulcers are not uncommon in transplant patients because of the steroids.

Other than those two problems, it's been really smooth sailing. I feel really well, everything is working well, God be thanked.

I've gained some weight. At home this a.m. I weighed 108.4; my blood sugar numbers are good (low 100's or high 90's, even though I take no meds for it). One reason for the move to Texas is that during the winter we will still be able to walk pretty much every day, and we've been trying to do that, which is a big help with blood sugar. I am a little concerned because my blood pressure seems to be a little higher (in the 140's most mornings). Need to check with Baylor about that. My kidney function, as shown through the creatinine tests, has remained at 0.6 even when I've been sick, for which the doctors are very pleased. But no more pleased than I am!

I have an appointment at Baylor next week, a routine clinic visit.