Last Thursday, I managed to find a pair of the jeans I last wore while at my heaviest on steroids. At that time I weighed in at 164 lbs. The weight was from a combination of steroid eating and fluid retention. I tried them on and could just barely button them. My current weight is 152 lbs. It's most definitely mostly fluid retention.
My disappointment at the poor fit coupled with my extreme discomfort doing most things compelled me to email my transplant team. I stopped being stubborn and gave in to lasix.
Lasix is a diuretic that can be administered via IV infusion or in pill form. I've only had it as an IV while in the hospital. My experience with it then was that it worked within 15 minutes and that I'd need to urinate every 10 minutes until the drug wore off.
I started taking the lasix pills Friday. They don't work as quickly and the urge to run to the water closet doesn't approach the scale of an all out emergency. However, I was feeling more comfortable in my own skin by the end of the night.
I haven't really discussed it before, but the excessive pressure around my torso made digestion a nightmare. Anything I ate would sit like a stone in my stomach for most of the day. My abdomen would become distended with each subsequent meal. Extreme constipation was my co-pilot.
Saturday, I could eat a meal and feel normal. I didn't have to work as hard to draw breath. Lest anyone become alarmed, I did not have trouble breathing because my lungs were inflamed. The pressure from the extra fluid meant that I had to exert a little more to draw breath. Once the lasix started to work, my breathing became normal.
Sunday morning, I took my pill and noticed that it didn't seem to be working by mid-day. I soon learned why. The pill is about 1/3 the size of a tic-tac and I have diminished feeling in my fingertips. The pill slipped out of my grasp before it made it to my mouth. I found the pill in its pristine whiteness lying on my bed. I'm thankful one of the cats hadn't eaten it. I took a dose a little before 2pm and it didn't begin working until after dinner. Back to feeling bloated.
I also gave in and bought bigger pants. They'll hang in my closet next to the bigger tops after this is all over. This time, I'll keep them around, just in case.
Monday, January 10, 2011
Wednesday, January 5, 2011
Another month, another trip to Houston
To keep things interesting, I had an appointment with my transplant doctor this past Monday. I'm still on steroids, so Dr. K. is keeping a close eye on me. She commented on how my face looked less full. I countered her observation in the negative. Ten minutes into the visit, she began to agree with me.
She noted that my legs are slightly swollen, and my arms are a little more so. She was most concerned with the amount of fluid around my middle. I'm now officially 15 pounds up from my base weight. Dr. K. brought up lasix, which is a diuretic that I've received via IV infusion many times before. This time around, she offered me an oral course spanning 4 to 5 days. I had concerns about the extra work it would create for my kidneys and was told not to worry about it. I still declined. I'm uncomfortable with the extra fluid, but don't feel that the very temporary relief provided by the lasix would be worth taking yet another medication. Dr. K. offered to call the prescription in for me if or when I change my mind. If it gets any worse, I'll follow through.
Dr. K. also wants to recheck my thyroid levels next visit since my waist has become so thick in the last month. Okay.
As for my blood-work, I only have cell counts. The chemistry wasn't available due to the backlog of patients left over from the holiday weekend. Here's what I have:
WBC: 14.4 K/UL (4.0-11.0) Dr. K. suggested that my white count is high due to steroids. I saw my local oncologist 2 weeks ago and my white blood cell count was somewhere around 18 K/UL and Dr. B. speculated that steroids were also the culprit.
RBC: 3.56 M/UL (4.00-5.50) It's low and no one was bothered.
Hemoglobin: 12.0 (12.0-16.0)
Platelets: 259 K/UL (140-440)
ANC: 10.73 K/UL (1.70-7.30) This makes sense since my white blood cell count was high.
ALC: 1.83 K/UL (1.00-4.80)
AEC: 0.00 (0.04-0.40) I'm taking steroids, so the absence of eosinophils isn't a surprise. These are the little beasties responsible for inflammation and GvHD.
I didn't get a frantic call from my nurse later in the day, so I'm going to assume that my chemistry results were passable. I have to return in a month to get rechecked. I've also been given a pass on seeing my local oncologist this month for blood work. My veins are happy.
My steroid dosage has been cut in half. I'll take 8 mg every other day for a month. Dr. K. referred to it as a therapeutic dose. She also looked me in the eye and warned that I would begin to feel terrible and that I should be ready. I am. She assured me that the cushingoid aspect of my features should start to resolve at these lower levels. In layman's terms, she means that my puffiness should start to subside. I know it will, just not as quickly as she expects.
The fluid will come off in its own time. Of course, I'd like for it to dissipate sooner rather than later since it's severely affected my ability to fit into any bottoms I currently own. I can't keep spending my days in pajamas. It's starting to get scandalous and feeding into my reluctance to leave the house. Classes start in less than 2 weeks and I'd like to be able to sit down without the waistband of my pants rolling down from the downward pressure of my muffin top. I know the solution is to by bigger pants, but having just bought bigger tops, I'm reluctant. I'm just being stubborn.
In the mean time, I've been dealing with trying to get a contractor out to look at a leak that has developed around our chimney. The roof on our house was replaced the year that we bought it by the previous owner. From the placement of the water stains in my ceiling and what Chris observed in the attic, it's not the roof or the flashing around the chimney. I suspect it's the 12 year-old masonite siding on the chimney. You can see that it's suffering from age and neglect. It had to be repaired before we bought the house. I'm guessing that it wasn't done correctly.
I got our first estimate today and it took everything in me not to pull out my copy of RS Means and lay it down in front of the contractor to show him that I was familiar with what labor and materials cost. I can throw out estimates fairly accurately and the number I had in my head wasn't close to the quote. When I asked for a better break down, I heard the phrase, "at cost". Hardly.
Two more estimates tomorrow and a no-show today who may or may not try to reschedule. I'm still trying to decide whether or not to casually display some of my construction reference books in the hopes that should any of the other contractors care to treat me like I've never handled a piece of lumber before, they might reconsider.
We'll see.
She noted that my legs are slightly swollen, and my arms are a little more so. She was most concerned with the amount of fluid around my middle. I'm now officially 15 pounds up from my base weight. Dr. K. brought up lasix, which is a diuretic that I've received via IV infusion many times before. This time around, she offered me an oral course spanning 4 to 5 days. I had concerns about the extra work it would create for my kidneys and was told not to worry about it. I still declined. I'm uncomfortable with the extra fluid, but don't feel that the very temporary relief provided by the lasix would be worth taking yet another medication. Dr. K. offered to call the prescription in for me if or when I change my mind. If it gets any worse, I'll follow through.
Dr. K. also wants to recheck my thyroid levels next visit since my waist has become so thick in the last month. Okay.
As for my blood-work, I only have cell counts. The chemistry wasn't available due to the backlog of patients left over from the holiday weekend. Here's what I have:
WBC: 14.4 K/UL (4.0-11.0) Dr. K. suggested that my white count is high due to steroids. I saw my local oncologist 2 weeks ago and my white blood cell count was somewhere around 18 K/UL and Dr. B. speculated that steroids were also the culprit.
RBC: 3.56 M/UL (4.00-5.50) It's low and no one was bothered.
Hemoglobin: 12.0 (12.0-16.0)
Platelets: 259 K/UL (140-440)
ANC: 10.73 K/UL (1.70-7.30) This makes sense since my white blood cell count was high.
ALC: 1.83 K/UL (1.00-4.80)
AEC: 0.00 (0.04-0.40) I'm taking steroids, so the absence of eosinophils isn't a surprise. These are the little beasties responsible for inflammation and GvHD.
I didn't get a frantic call from my nurse later in the day, so I'm going to assume that my chemistry results were passable. I have to return in a month to get rechecked. I've also been given a pass on seeing my local oncologist this month for blood work. My veins are happy.
My steroid dosage has been cut in half. I'll take 8 mg every other day for a month. Dr. K. referred to it as a therapeutic dose. She also looked me in the eye and warned that I would begin to feel terrible and that I should be ready. I am. She assured me that the cushingoid aspect of my features should start to resolve at these lower levels. In layman's terms, she means that my puffiness should start to subside. I know it will, just not as quickly as she expects.
The fluid will come off in its own time. Of course, I'd like for it to dissipate sooner rather than later since it's severely affected my ability to fit into any bottoms I currently own. I can't keep spending my days in pajamas. It's starting to get scandalous and feeding into my reluctance to leave the house. Classes start in less than 2 weeks and I'd like to be able to sit down without the waistband of my pants rolling down from the downward pressure of my muffin top. I know the solution is to by bigger pants, but having just bought bigger tops, I'm reluctant. I'm just being stubborn.
In the mean time, I've been dealing with trying to get a contractor out to look at a leak that has developed around our chimney. The roof on our house was replaced the year that we bought it by the previous owner. From the placement of the water stains in my ceiling and what Chris observed in the attic, it's not the roof or the flashing around the chimney. I suspect it's the 12 year-old masonite siding on the chimney. You can see that it's suffering from age and neglect. It had to be repaired before we bought the house. I'm guessing that it wasn't done correctly.
I got our first estimate today and it took everything in me not to pull out my copy of RS Means and lay it down in front of the contractor to show him that I was familiar with what labor and materials cost. I can throw out estimates fairly accurately and the number I had in my head wasn't close to the quote. When I asked for a better break down, I heard the phrase, "at cost". Hardly.
Two more estimates tomorrow and a no-show today who may or may not try to reschedule. I'm still trying to decide whether or not to casually display some of my construction reference books in the hopes that should any of the other contractors care to treat me like I've never handled a piece of lumber before, they might reconsider.
We'll see.
Saturday, January 1, 2011
My first date with Kai
I think I've been taking steroids for 14 weeks now. You can see how the fluid is collecting in my face, neck, and torso. I also had the pleasure of meeting my nephew, Kai. I may be biased, but he's gorgeous and just a doll.
Sorting it all out
Over the last few weeks, I've been finding it more difficult than usual to update the blog. It's been a combination of things like the holidays and steroids colluding to keep me away. Mainly, I haven't liked any of the topics that have occurred to me.
My steroid weight gain has topped out at 10 pounds over the last two weeks. It's mostly around my midsection and it's making me miserable. I know it's mostly fluid. I know it will resolve once the steroids stop. I know that I am still me.
I'm still bothered. Nothing fits. Nothing. I had to buy new tops about a month after the steroids started for the same reason. I just ordered a slew of tops in the next bigger size. I am uncomfortable in my own skin and it has brought me perilously close to a pity party.
I'm not complaining about feeling fat. Steroid weight isn't like that for me. If you could see me in real life, you'd know what I was talking about. My legs are still the same size as they were in the beginning, if not smaller from deteriorating muscle tone. I look a bit like a scaled down version of Violet Beauregard from the original Charlie and the Chocolate Factory movie starring Gene Wilder, post gum debacle.
It's a matter of looking like the odd man out. I tend to like to blend in with the herd. Especially post cancer. I've managed to distinguish myself enough in the world of weird disorders and treatment. Time for someone else to shine.
The frustration of this all has fed into a general feeling of what's next?
That's not like me and I've worked on snapping out of it. I'm not feeling sorry for myself, and I don't want any one else to. I am putting one foot in front of the other and I am determined to plow through this just like I've done each time before.
I just had to remind myself of why I keep doing this. I get up every day because I want to stick my thumb in the eye of cancer. I write this blog so that others who have been diagnosed know that they aren't alone. Every day that I push forward toward my goals is a win and we all like to win.
Eight days from today, four years ago, I was told that I had leukemia. Two days later, I started treatment in Houston. I think I'll let these two dates pass with no celebration. I'll have made four years and as far as I'm concerned, that's a major win.
My steroid weight gain has topped out at 10 pounds over the last two weeks. It's mostly around my midsection and it's making me miserable. I know it's mostly fluid. I know it will resolve once the steroids stop. I know that I am still me.
I'm still bothered. Nothing fits. Nothing. I had to buy new tops about a month after the steroids started for the same reason. I just ordered a slew of tops in the next bigger size. I am uncomfortable in my own skin and it has brought me perilously close to a pity party.
I'm not complaining about feeling fat. Steroid weight isn't like that for me. If you could see me in real life, you'd know what I was talking about. My legs are still the same size as they were in the beginning, if not smaller from deteriorating muscle tone. I look a bit like a scaled down version of Violet Beauregard from the original Charlie and the Chocolate Factory movie starring Gene Wilder, post gum debacle.
It's a matter of looking like the odd man out. I tend to like to blend in with the herd. Especially post cancer. I've managed to distinguish myself enough in the world of weird disorders and treatment. Time for someone else to shine.
The frustration of this all has fed into a general feeling of what's next?
That's not like me and I've worked on snapping out of it. I'm not feeling sorry for myself, and I don't want any one else to. I am putting one foot in front of the other and I am determined to plow through this just like I've done each time before.
I just had to remind myself of why I keep doing this. I get up every day because I want to stick my thumb in the eye of cancer. I write this blog so that others who have been diagnosed know that they aren't alone. Every day that I push forward toward my goals is a win and we all like to win.
Eight days from today, four years ago, I was told that I had leukemia. Two days later, I started treatment in Houston. I think I'll let these two dates pass with no celebration. I'll have made four years and as far as I'm concerned, that's a major win.
Wednesday, December 15, 2010
Making time
I checked the date of when I last blogged and realized how remiss I've been. It seems that the older I get, the less inclined I am to put words down on paper. Fifteen years ago, I would have filled a hundred notebooks with scribbles and thoughts, compelled to share. Now I feel like a hoarder, keeping things to myself.
I am well. Chris is well. The cats are well.
After I took my last final, I gave myself license to give into the steroids and vegetate and let my body slow down. I don't think I left the house for three days and pajamas were my uniform. I did manage to sew a Christmas tree skirt and four stockings for the mantle. I'm not a particularly crafty person, but I couldn't find anything commercially that I liked, and so I elected to make it myself.
Every summer, between the ages of four and six, my mother would try to teach me to sew. She's an expert seamstress and can draw patterns in her sleep. She can also cut without a pattern and turn out something professionally done. Unfortunately, her teaching style was more in the vein of learn through osmosis rather than instruction. What sane person thought a child under six would patiently sit and watch fabric run through a machine while taking notes is beyond me. There were never really any directions and the one time I tried sewing a seam on my own, my tiny finger went under the presser foot and the needle went through my nail and finger. That was the end of it as far as I was concerned. Still, something must have penetrated my resistance to learning.
Final grades posted this morning and with everything going on, I managed to get an A and B. I'm relieved to have it behind me and have started thinking about next semester. I've scheduled three classes, but think that I may cut back to two physical classes and one correspondence class. The last two months of this semester were particularly difficult for me mentally and physically. I know there won't be much of a change in the month I have off before the spring semester starts. I'm still thinking on it.
I had a few follow-up appointments in Houston yesterday and got a few more good reports. The radiologist who reviewed my chest X-ray reported that I had a near complete resolution of obliterates. I saw the X-rays and there were just a few hazy spots where there's still inflammation. They looked great, though. I also had another pulmonary function test. Back in September when the GvHD of the lungs made itself known, I'd failed a PFT. My lungs were functioning at 59%. The PFT I did following that showed an improvement and I was at 62%. Yesterday showed further improvement and I was at 66%. Baby steps. This could take months to resolve and I have to be patient. The baseline PFT that the pulmonologist is using is from June of this year where my lungs were functioning at 86%. I'll get there. Since I'm tapering oral steroids, I've been started on a steroid inhaler for my lungs.
I also saw my dermatologist who specializes in GvHD of the skin. She found a spot of GvHD in my mouth and told me that she could see where I was starting to develop GvHD on the sides of my abdomen. It's still very faint. There's also a spot starting on the side of the bridge of my nose. She also told me that my skin was perfect as far as she was concerned and coming from a doctor of that caliber, I couldn't be more pleased.
The resident who was training with my dermatologist took some extra time with me to go over my medications and my lifestyle. She took the time to talk to me about the link between taking tacrolimus for an extended period of time and skin cancer. I already knew about this. I wear sunscreen and stay out of the sun as much as I can. Tacro can also lead to lymphoma. Trust me, I've done my homework. I'm not going to worry about secondary cancers. I'll worry about doing what I can to stay healthy.
As a further bonus, my dermatologist has released me and I only have to see her on an as needed basis. We're moving in the right direction. I'll see the pulmonary specialist in three months and have all of the tests repeated. There may also be a CT scan for good measure.
There you have it. No words of wisdom, but an update none the less.
Added bonus: Me at 11 weeks on steroids
I am well. Chris is well. The cats are well.
After I took my last final, I gave myself license to give into the steroids and vegetate and let my body slow down. I don't think I left the house for three days and pajamas were my uniform. I did manage to sew a Christmas tree skirt and four stockings for the mantle. I'm not a particularly crafty person, but I couldn't find anything commercially that I liked, and so I elected to make it myself.
Every summer, between the ages of four and six, my mother would try to teach me to sew. She's an expert seamstress and can draw patterns in her sleep. She can also cut without a pattern and turn out something professionally done. Unfortunately, her teaching style was more in the vein of learn through osmosis rather than instruction. What sane person thought a child under six would patiently sit and watch fabric run through a machine while taking notes is beyond me. There were never really any directions and the one time I tried sewing a seam on my own, my tiny finger went under the presser foot and the needle went through my nail and finger. That was the end of it as far as I was concerned. Still, something must have penetrated my resistance to learning.
Final grades posted this morning and with everything going on, I managed to get an A and B. I'm relieved to have it behind me and have started thinking about next semester. I've scheduled three classes, but think that I may cut back to two physical classes and one correspondence class. The last two months of this semester were particularly difficult for me mentally and physically. I know there won't be much of a change in the month I have off before the spring semester starts. I'm still thinking on it.
I had a few follow-up appointments in Houston yesterday and got a few more good reports. The radiologist who reviewed my chest X-ray reported that I had a near complete resolution of obliterates. I saw the X-rays and there were just a few hazy spots where there's still inflammation. They looked great, though. I also had another pulmonary function test. Back in September when the GvHD of the lungs made itself known, I'd failed a PFT. My lungs were functioning at 59%. The PFT I did following that showed an improvement and I was at 62%. Yesterday showed further improvement and I was at 66%. Baby steps. This could take months to resolve and I have to be patient. The baseline PFT that the pulmonologist is using is from June of this year where my lungs were functioning at 86%. I'll get there. Since I'm tapering oral steroids, I've been started on a steroid inhaler for my lungs.
I also saw my dermatologist who specializes in GvHD of the skin. She found a spot of GvHD in my mouth and told me that she could see where I was starting to develop GvHD on the sides of my abdomen. It's still very faint. There's also a spot starting on the side of the bridge of my nose. She also told me that my skin was perfect as far as she was concerned and coming from a doctor of that caliber, I couldn't be more pleased.
The resident who was training with my dermatologist took some extra time with me to go over my medications and my lifestyle. She took the time to talk to me about the link between taking tacrolimus for an extended period of time and skin cancer. I already knew about this. I wear sunscreen and stay out of the sun as much as I can. Tacro can also lead to lymphoma. Trust me, I've done my homework. I'm not going to worry about secondary cancers. I'll worry about doing what I can to stay healthy.
As a further bonus, my dermatologist has released me and I only have to see her on an as needed basis. We're moving in the right direction. I'll see the pulmonary specialist in three months and have all of the tests repeated. There may also be a CT scan for good measure.
There you have it. No words of wisdom, but an update none the less.
Added bonus: Me at 11 weeks on steroids
Tuesday, December 14, 2010
Haiku for Akiko
- Green frog,
- Is your body also
- freshly painted?
- Sick and feverish
- Glimpse of cherry blossoms
- Still shivering.
NOM NOM NOM NOM NOM!!!!
Thursday, December 2, 2010
Putting down words
The last month has been a handful for me to handle in terms of sheer activity. There have been class projects and papers and presentations that have been taking up a lot of my time. My nephew was born on Veteran's day. I've been in a doctor's office every two weeks since September, either locally or in Houston.
I finally got to meet an old friend's wife, Mara, while they were down in New Orleans for Thanksgiving. She is as lovely and gracious and fun in person as I knew she would be and possesses the rare talent of putting people at ease with her laugh and a smile. I only wish they lived closer so we could all see more of each other on a regular basis.
And then there's the matter of the steroid taper. Today marks nine weeks of taking methylprednisilone. I started out on a dose of 64 mg daily. When you first start taking this medication, you feel awful. You're jittery and your heart races. You can't sleep and all you want to do is zip around the room while stuffing your face with anything that isn't moving. Then, for one blissful moment, the symptoms causing you to be on steroids resolve and the side effects take a backseat to the sheer relief of being able to breathe.
You don't get very much time to enjoy the moment. Your taper starts as soon as you stabilize in order to minimize the very real damage steroids can do to your system. You're doctor is trying to prevent a host of boogie men from taking up residence in your body. You'd think shunting the steroids from your system would be a good thing, and it is, but you feel horrible while it's happening.
I have felt less than well for the last month. It's not the same as being sick with the flu or on the verge of a cold. It's more a feeling of pervasive tiredness and the inability to get motivated. I'm suffering from muscle weakness and shake constantly as a result. I can't stand for long periods without leaning on something for support. If I forget myself and sit on the floor out of reach of a prop with which I can pull myself up, I'm stuck like a one-legged turtle flipped on its back. I have a hard time with stair risers and it takes me longer than it should to get in and out of a car. I can only imagine how bad it would have been had I not been exercising. It is getting better.
I've had a hard time keeping up with the blog with everything going on. There have been many half-hearted attempts at putting down words that have been discarded in the face of everything. I haven't abandoned them completely and I'll flesh out a few for future posts.
I was in Houston yesterday to see my transplant specialist. She took one look at me, touched my face and apologized for what steroids had done to my appearance. This made me smile because she's just one of those special individuals who should be a doctor and is a credit to her profession. Until we spoke yesterday, I hadn't realized that I was in a very small percentage of people who happen to be extremely sensitive to steroids. I've known from previous treatment that I react quickly to the drugs, but didn't realize that my reaction was so extreme.
When Dr. K. saw how swollen my face, neck, and shoulders are, she decided that I needed to be on an accelerated taper. I'll start taking 48 mg every other day for a week, then 32 mg every other day for a week. I'll see her again following that with the plan being to get me down to 16 mg every other day for a week. She'll slow the taper down from there and speculated that I'll be placed on inhaled steroids for my lungs. I'll also be seeing the GvHD lung specialist the same day and having a complete pulmonary workup as well as more xrays.
If history repeats itself, it will be a little over six months before I lose all of the swelling in my features and around my midsection once steroids stop. I'll be relieved once I stop feeling like my skin's about to burst open from all of the pressure. It's that uncomfortable.
As for my blood work, it was mostly normal. I've managed to lose the report, but here are the numbers from memory:
WBC: 8.7 normal
RBC: 3.87 low, but on the cusp of normal
Hemoglobin: 12.7 normal
Platelets: 142 low end of normal
ANC: 6.66 normal
Alanine aminotransferase: 44 normal
Aspartate aminotransferase: 21 normal
LDH: 1163 really, really high
Two of my liver enzymes are perfect and that's what we've been aiming for. My LDH continues to trend in the wrong direction and so Dr. K. had me go in for a little more blood work to test my Epstein-Barre virus titers. EBV is the nasty little bug that causes mono and most adults carry it. It's also what leads to PTLD(pre-lymphoma) in patients with suppressed immune systems. I've already been treated for PTLD once and it was enough. I'd rather not do the riddled with tumors thing again. If my titers are high, I suspect that there will be an increase in the amount of valtrex I take in the hopes of heading off trouble. If it's not EBV, then I don't know what the next step will be. I'll know more in two weeks once the test results come back.
I have finals next week, so this will likely be the only post from me this week. Chris has a video he took over the weekend that he was supposed to post. You know what to do if you want to see it.
This is a picture at eight weeks on steroids
I finally got to meet an old friend's wife, Mara, while they were down in New Orleans for Thanksgiving. She is as lovely and gracious and fun in person as I knew she would be and possesses the rare talent of putting people at ease with her laugh and a smile. I only wish they lived closer so we could all see more of each other on a regular basis.
And then there's the matter of the steroid taper. Today marks nine weeks of taking methylprednisilone. I started out on a dose of 64 mg daily. When you first start taking this medication, you feel awful. You're jittery and your heart races. You can't sleep and all you want to do is zip around the room while stuffing your face with anything that isn't moving. Then, for one blissful moment, the symptoms causing you to be on steroids resolve and the side effects take a backseat to the sheer relief of being able to breathe.
You don't get very much time to enjoy the moment. Your taper starts as soon as you stabilize in order to minimize the very real damage steroids can do to your system. You're doctor is trying to prevent a host of boogie men from taking up residence in your body. You'd think shunting the steroids from your system would be a good thing, and it is, but you feel horrible while it's happening.
I have felt less than well for the last month. It's not the same as being sick with the flu or on the verge of a cold. It's more a feeling of pervasive tiredness and the inability to get motivated. I'm suffering from muscle weakness and shake constantly as a result. I can't stand for long periods without leaning on something for support. If I forget myself and sit on the floor out of reach of a prop with which I can pull myself up, I'm stuck like a one-legged turtle flipped on its back. I have a hard time with stair risers and it takes me longer than it should to get in and out of a car. I can only imagine how bad it would have been had I not been exercising. It is getting better.
I've had a hard time keeping up with the blog with everything going on. There have been many half-hearted attempts at putting down words that have been discarded in the face of everything. I haven't abandoned them completely and I'll flesh out a few for future posts.
I was in Houston yesterday to see my transplant specialist. She took one look at me, touched my face and apologized for what steroids had done to my appearance. This made me smile because she's just one of those special individuals who should be a doctor and is a credit to her profession. Until we spoke yesterday, I hadn't realized that I was in a very small percentage of people who happen to be extremely sensitive to steroids. I've known from previous treatment that I react quickly to the drugs, but didn't realize that my reaction was so extreme.
When Dr. K. saw how swollen my face, neck, and shoulders are, she decided that I needed to be on an accelerated taper. I'll start taking 48 mg every other day for a week, then 32 mg every other day for a week. I'll see her again following that with the plan being to get me down to 16 mg every other day for a week. She'll slow the taper down from there and speculated that I'll be placed on inhaled steroids for my lungs. I'll also be seeing the GvHD lung specialist the same day and having a complete pulmonary workup as well as more xrays.
If history repeats itself, it will be a little over six months before I lose all of the swelling in my features and around my midsection once steroids stop. I'll be relieved once I stop feeling like my skin's about to burst open from all of the pressure. It's that uncomfortable.
As for my blood work, it was mostly normal. I've managed to lose the report, but here are the numbers from memory:
WBC: 8.7 normal
RBC: 3.87 low, but on the cusp of normal
Hemoglobin: 12.7 normal
Platelets: 142 low end of normal
ANC: 6.66 normal
Alanine aminotransferase: 44 normal
Aspartate aminotransferase: 21 normal
LDH: 1163 really, really high
Two of my liver enzymes are perfect and that's what we've been aiming for. My LDH continues to trend in the wrong direction and so Dr. K. had me go in for a little more blood work to test my Epstein-Barre virus titers. EBV is the nasty little bug that causes mono and most adults carry it. It's also what leads to PTLD(pre-lymphoma) in patients with suppressed immune systems. I've already been treated for PTLD once and it was enough. I'd rather not do the riddled with tumors thing again. If my titers are high, I suspect that there will be an increase in the amount of valtrex I take in the hopes of heading off trouble. If it's not EBV, then I don't know what the next step will be. I'll know more in two weeks once the test results come back.
I have finals next week, so this will likely be the only post from me this week. Chris has a video he took over the weekend that he was supposed to post. You know what to do if you want to see it.
This is a picture at eight weeks on steroids
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