Today is the two year anniversary of my kidney transplant. The transplant actually took place on a Sunday, which was Aldo Mother's Day that year. So I celebrate both on Mother's Day and on the actual date--May 13. I've written to the donor's family, but did not hear back from them, so I may never know anything more about the donor. May he rest in peace, and may his family find peace in their grief.
I am doing really well at my last transplant clinic visit on March 30, my creatinine was 0.5! It has hovered between 0.5 and 0.7 at every visit. I am now gown to 3 clinic visits a year. There are two things I need to improve on--my weight (now at 112), and the fact that I've developed osteoporosis in my pelvis and osteopenia in my spine. The bone density problems are caused by the steroids I take, which also contribute to my weight gain. I weighed 107 right before the transplant, then dropped to 105 after the transplant. I need to get back in that range again. I have been prescribed Actonel 35 for the osteo issues.
This last week I've been diagnosed with having a torn rotator cuff in my right shoulder. I was given a steroid shot in my shoulder and that seems to be helping a lot. Of course, I still hear all the grinding noises when I move my arm. Dr. Heinzelmann, the orthopedic doctor said I have developed bone spurs in my shoulder bone, and the spurs have narrowed the space in which the ball and socket joint move. The spurs have abraded the cuff and caused it to tear. This is a degenerative condition and, at age 70, not something that is likely to be treated with surgery. So the shots will have to suffice. My right arm is therefore not as able to do any work that requires a lot of strength. This is why, when the elderly fall, they may not be able to get up--because their arms are not strong enough to push/pull themselves upright.
I walk every day, weather permitting. In Texas we have a treadmill at home, so we walk every day. My goal is to take 10,000 steps a day. I pretty we'll make my goal at least 6 days a week.
I am still working for McGoodwin, Williams, and Yates, Consulting Engineers. In Texas I am able to work via email and phone. In AR input in face time, so I work a lot more hours while I'm here. Still, I work not much more than 20 hours a week maximum and usually not that much. I enjoy the work, and the money comes in handy. Plus, working at the office gives me a chance to interact professionally with other people , something which I miss.
The Texas house is voting along nicely. In the last year we had it painted inside and had laminate flooring pit in. My sewing loft is such a nice retreat for me. I like spending time there, even when I'm not sewing. We hope to put the AR house on the market next spring. I hope it sells quickly. It would be nice not to have two mortgage payments. Once the AR house sells, we 'll be able to afford a remodel of the matter bath in the Texas house. Then the Texas house will be pretty much the way we want it.
Tuesday, May 13, 2014
Monday, May 13, 2013
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.
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.
Monday, April 15, 2013
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.
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.
Saturday, April 13, 2013
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.
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.
Thursday, March 21, 2013
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.
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.
Wednesday, November 14, 2012
November 13--six month anniversary of transplant
Yesterday, November 13, was the six month anniversary of my transplant. This is a significant transplant milestone, and it had special significance for me because my dad died before his 6 month anniversary. At the back of my mind lingered the question whether I would make it to 6 months.
I thank God for these six months of a new life. I feel great, my blood work results have all been good so far, and the only glitch seems to be that my Prograf (one of the anti-rejection meds) tends to build up in my blood and get too high. The target range is 6-9 (don't know the units), but it's climbed as high as 23. Last week it was 15, and my local doctor and the Baylor doctors recommended that I drop my dose down to 0.5 mg once per day, down from 0.5 mg twice a day. The 0.5 mg pill is the lowest dose they make, so taking one pill per day is as low as they can go. At one point early after the transplant, my level got so high that they dropped my dose to 0.5 mg every other day. Some people cannot tolerate the high doses, and it gives them visible and sometimes violent tremors. So far the worst that I have experienced is that I feel shaky, like when you drink too much coffee, but there is no visible shakiness when I hold my hand out.
Because 6 months is a big milestone, Baylor has scheduled me for numerous tests next week, November 20 and 21. On the 20th I'll be doing a 24-hour urine collection, and on Wed. the 21 I'll go in for a routine clinic visit and then in the afternoon I'll have the second Glo-fil test (to test the glomerular filtration rate). My last Glo-fil showed performance at 91%, which is normal for someone with 2 good working kidneys!
The Glo-fil test takes all afternoon, so afterwards we'll drive to Dallas, and will celebrate Thanksgiving the next day with Ramiro's family. If possible we hope to see my sister and her husband at the Dallas Museum of Art on Friday. She's in Dallas on Thanksgiving to run in the Turkey Trot (a 10K? run). The DMA has an exhibit on Quetzlcoatl, the Feathered Serpent, which I'm especially interested in after having made a Feathered Serpent art quilt that was juried into the Houston Quilt Show several years ago.
After the DMA visit Ramiro and I hope to drive around McKinney to see some apartments and townhomes we are interested in for this winter. We have a contract to sell the lake house, and if all goes well, we'd like to spend this winter in Texas, probably renting something for a few months. We thought of renting in Ft. Worth, but since we are thinking more along the lines of buying something in the McKinney-Prosper-Savannah area, it would make more sense to rent there to get a feel for how we like it and whether it would work for us in terms of going to Baylor in Ft. Worth for follow up appointments. We've previously taken a look at an apartment in Ft. Worth right across the street from Central Market (an ideal location!) and we know that would be perfect for us. However, in the long run, living in Ft. Worth would not work as well as living in the Dallas area. For one thing, FW is 40 miles from Dallas, and it's not likely that Ramiro's family would visit. It would still be too far for me to participate in my Dallas quilters' group activities, and we have no other family in the area. My sister lives in Houston, one brother lives in Rockport and the other brother lives south east of San Antonio, so none of them have any other reason to visit Ft. Worth. But my sister travels to Dallas frequently, my Rockport brother's wife has family in the Dallas area, and my San Antonio brother's wife has family in Grand Prairie, not far from Dallas. Of course it al depends on the sale of the lake house. We are scheduled to close on November 21, so we should know more by Thanksgiving Day.
I thank God for these six months of a new life. I feel great, my blood work results have all been good so far, and the only glitch seems to be that my Prograf (one of the anti-rejection meds) tends to build up in my blood and get too high. The target range is 6-9 (don't know the units), but it's climbed as high as 23. Last week it was 15, and my local doctor and the Baylor doctors recommended that I drop my dose down to 0.5 mg once per day, down from 0.5 mg twice a day. The 0.5 mg pill is the lowest dose they make, so taking one pill per day is as low as they can go. At one point early after the transplant, my level got so high that they dropped my dose to 0.5 mg every other day. Some people cannot tolerate the high doses, and it gives them visible and sometimes violent tremors. So far the worst that I have experienced is that I feel shaky, like when you drink too much coffee, but there is no visible shakiness when I hold my hand out.
Because 6 months is a big milestone, Baylor has scheduled me for numerous tests next week, November 20 and 21. On the 20th I'll be doing a 24-hour urine collection, and on Wed. the 21 I'll go in for a routine clinic visit and then in the afternoon I'll have the second Glo-fil test (to test the glomerular filtration rate). My last Glo-fil showed performance at 91%, which is normal for someone with 2 good working kidneys!
The Glo-fil test takes all afternoon, so afterwards we'll drive to Dallas, and will celebrate Thanksgiving the next day with Ramiro's family. If possible we hope to see my sister and her husband at the Dallas Museum of Art on Friday. She's in Dallas on Thanksgiving to run in the Turkey Trot (a 10K? run). The DMA has an exhibit on Quetzlcoatl, the Feathered Serpent, which I'm especially interested in after having made a Feathered Serpent art quilt that was juried into the Houston Quilt Show several years ago.
After the DMA visit Ramiro and I hope to drive around McKinney to see some apartments and townhomes we are interested in for this winter. We have a contract to sell the lake house, and if all goes well, we'd like to spend this winter in Texas, probably renting something for a few months. We thought of renting in Ft. Worth, but since we are thinking more along the lines of buying something in the McKinney-Prosper-Savannah area, it would make more sense to rent there to get a feel for how we like it and whether it would work for us in terms of going to Baylor in Ft. Worth for follow up appointments. We've previously taken a look at an apartment in Ft. Worth right across the street from Central Market (an ideal location!) and we know that would be perfect for us. However, in the long run, living in Ft. Worth would not work as well as living in the Dallas area. For one thing, FW is 40 miles from Dallas, and it's not likely that Ramiro's family would visit. It would still be too far for me to participate in my Dallas quilters' group activities, and we have no other family in the area. My sister lives in Houston, one brother lives in Rockport and the other brother lives south east of San Antonio, so none of them have any other reason to visit Ft. Worth. But my sister travels to Dallas frequently, my Rockport brother's wife has family in the Dallas area, and my San Antonio brother's wife has family in Grand Prairie, not far from Dallas. Of course it al depends on the sale of the lake house. We are scheduled to close on November 21, so we should know more by Thanksgiving Day.
Wednesday, October 10, 2012
Almost 4 months since my transplant
My 4 month anniversary is this coming Saturday, October 13. I am feeling great, my weight is stable (103 at home; 106 at the doctor's office), and all the numbers (creatinine, hemoglobin, electrolytes, etc.) look great. Dr. Moulton said yesterday that if I just made up some numbers to put on my chart, I would not make them up as good as they really are!
I'm experiencing few side effects from the meds I'm taking. The most distressing side effect is hair loss. I found several discussion forums on the internet that include women who are on steroids either for transplant reasons or for rheumatoid arthritis (RA). A number of them reported moderate to severe hair loss, and most of them said that it seemed to have started when they were put on the steroid tapering schedule. The tapering schedule is the "weaning" process through which the initial large dose of daily post-transplant steroids are reduced over a period of time. My hair loss started in September, about a month after the tapering schedule ended (I went from 20 mg to 10 mg of steroids daily) in August.
The good news from the discussion forums is that the hair does eventually grow back, and some women reported that theirs had come back curly (if it was straight before) or straight if it was curly before. Maybe I'll have curly hair at some point!
As best I can tell, my har is breaking off rather than falling out from the roots. I've checked the hairs that come off in my hands when I wash it, and few of them have the root follicles on the ends.Plus, the hair that hasn't fallen out appears to have been cut very short, which I take to mean that the hairs have broken off somewhere between 1/2 to 2/3 of the way from the ends. Whatever is happening, my hair is thin enough so that you can see my scalp; no bald spots, just very thin hair, and what I have seems to be rather lifeless and limp. I've considered having my stylist buzz my head so that I'd be better able to tell whether it's growing any, but that would leave me with absolutely no option other than to cover my head 100% of the time. Right now I am still able to go with my head uncovered at least at home; for our walks I tie a scarf around it or wear a baseball cap, but mostly because it is getting chilly rather than because of looks.
Even though I still have enough hair to go hatless, I was getting really self-conscious about my looks when going out. I have my high school reunion coming up on Oct. 19, and I didn't want to face that crowd with thin hair, so I went out and bought 2 wigs on Oct. 2. I got them at The Women's Pavilion in Rogers. They specialize in mastectomy bras and prosthetics, as well as wigs, scarves, turbans, etc. for women cancer patients. One of the wigs is short and has a tapered neckline much like my own hairstyle. It has blonder hair in the front and darker (brown) hair in the back, much like my own. Of course my own right now is starting to look mostly gray because I am not having any color applied while I'm still having hair loss. I think I may not have color applied until my hair has grown back to its previous volume, if it ever does.
I'm experiencing few side effects from the meds I'm taking. The most distressing side effect is hair loss. I found several discussion forums on the internet that include women who are on steroids either for transplant reasons or for rheumatoid arthritis (RA). A number of them reported moderate to severe hair loss, and most of them said that it seemed to have started when they were put on the steroid tapering schedule. The tapering schedule is the "weaning" process through which the initial large dose of daily post-transplant steroids are reduced over a period of time. My hair loss started in September, about a month after the tapering schedule ended (I went from 20 mg to 10 mg of steroids daily) in August.
The good news from the discussion forums is that the hair does eventually grow back, and some women reported that theirs had come back curly (if it was straight before) or straight if it was curly before. Maybe I'll have curly hair at some point!
As best I can tell, my har is breaking off rather than falling out from the roots. I've checked the hairs that come off in my hands when I wash it, and few of them have the root follicles on the ends.Plus, the hair that hasn't fallen out appears to have been cut very short, which I take to mean that the hairs have broken off somewhere between 1/2 to 2/3 of the way from the ends. Whatever is happening, my hair is thin enough so that you can see my scalp; no bald spots, just very thin hair, and what I have seems to be rather lifeless and limp. I've considered having my stylist buzz my head so that I'd be better able to tell whether it's growing any, but that would leave me with absolutely no option other than to cover my head 100% of the time. Right now I am still able to go with my head uncovered at least at home; for our walks I tie a scarf around it or wear a baseball cap, but mostly because it is getting chilly rather than because of looks.
Even though I still have enough hair to go hatless, I was getting really self-conscious about my looks when going out. I have my high school reunion coming up on Oct. 19, and I didn't want to face that crowd with thin hair, so I went out and bought 2 wigs on Oct. 2. I got them at The Women's Pavilion in Rogers. They specialize in mastectomy bras and prosthetics, as well as wigs, scarves, turbans, etc. for women cancer patients. One of the wigs is short and has a tapered neckline much like my own hairstyle. It has blonder hair in the front and darker (brown) hair in the back, much like my own. Of course my own right now is starting to look mostly gray because I am not having any color applied while I'm still having hair loss. I think I may not have color applied until my hair has grown back to its previous volume, if it ever does.
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