Month 15
After months of what seemed like a relatively straight (although not steep) line up in my recovery from the transplant, it seems there has been a dip in the road. The dip is not back toward my disease at all – my blood counts are still good as seen below.
..... last month current normal
..... ---------- ------- ---------
WBC.. 5.9 ...... 7.4 ..... 4 – 11
Hgb.. 11.5 ..... 11.2 ... 14 – 18
Plt.. 231 ...... 281 ... 150 – 400
Starting sometime around my last clinic visit a month ago, my muscles started being sore every day. At first, I thought it was because of tennis playing or something, but then we had a week of rain when I didn’t do much exercising, and my muscles were still sore or achy every day. It seems worse when I just get up in the morning or after other periods of inactivity like when I get up after sitting for a while. It seems better for a while when I use the muscles for some kind of exercise, but then they sore up again. It’s seems like it’s all my large muscles (and some of them are massive guns J) like my arms, legs, back, etc., and not my joints. Over the last few weeks, I also have definitely been getting winded easier. I can now do little without getting exhausted.
When I went in for my clinic visit on Thursday, I had gained 10 pounds since the month before (which really surprised me), and they noticed that my pulse ox was definitely low. The pulse ox is really some kind of saturation level of oxygen in the blood and it should be up near 100%. Mine is usually in the 96 – 98% range, but on Thursday, it was at 90%, which is too low. They had me walk up and down some steps and up and down the hall for a few minutes (which got me breathing pretty hard), and the pulse ox remained at 90%. I thought it would go up at least a little and commented to that effect, to which they responded that at least it didn’t go down. They also noticed that I was retaining a lot of fluids. When they pointed out how swollen my arms and legs were, I was blown away because it was so obvious and I hadn’t noticed it before they pointed it out. Looking at my swollen ankles might lead you to wonder if I was pregnant! I think that would also at least partially explain my weight gain.
After asking me questions, the doctor (who was a new doctor that I had not yet met), started thinking out loud and said that while it might be GvHD, because it can attack anything, it also might be something like a thyroid that has been thrown out of whack in a delayed reaction to chemotherapy. Apparently, the thyroid is the primary regulator of all sorts of bodily functions. After my appointment, they sent me over to the hospital for a chest x-ray. I am also now scheduled for an echocardiogram and a PFT (Pulmonary Function Test) on Wednesday. The PFT I took before my transplant was by far the most strenuous and uncomfortable test I had to endure. Testing my breathing sounds like it should be easy, right? Well, it’s very intense and long. The doctor on Thursday said, “You remember, the test where they yell at you.” The chest x-ray was clear as expected, and I’m sure there will probably be other tests after the ones on Wednesday. I’m scheduled for another clinic visit on Thursday.
So I’m not in a terrible state, but it is a bit discouraging to feel like I’m backsliding a bit after feeling like I was so close to getting off my meds altogether. It’s not fun to be achy all the time, out of breath whenever I exert myself at all, retaining so much fluid that I feel like an over inflated balloon, and still not enjoying the taste of food (getting of the anti-fungal drug didn’t seem to help at all with that), but I’m not suffering a great deal. I’m still certain that the current problem will be diagnosed and treated and I will feel like I’m back on the road to recovery.
To follow up on last month, I did participate in the bone marrow transplant orientation meeting last month and I found it quite rewarding to be there with people (along with families) who are about to go through the process to offer my experience about what it was like, and so they could see that one can come out on the other side with some level of normalcy (I can fake normalcy pretty well J).
I will write here again when I have news, which I hope will be pretty soon.
Love,
Justin
..... last month current normal
..... ---------- ------- ---------
WBC.. 5.9 ...... 7.4 ..... 4 – 11
Hgb.. 11.5 ..... 11.2 ... 14 – 18
Plt.. 231 ...... 281 ... 150 – 400
Starting sometime around my last clinic visit a month ago, my muscles started being sore every day. At first, I thought it was because of tennis playing or something, but then we had a week of rain when I didn’t do much exercising, and my muscles were still sore or achy every day. It seems worse when I just get up in the morning or after other periods of inactivity like when I get up after sitting for a while. It seems better for a while when I use the muscles for some kind of exercise, but then they sore up again. It’s seems like it’s all my large muscles (and some of them are massive guns J) like my arms, legs, back, etc., and not my joints. Over the last few weeks, I also have definitely been getting winded easier. I can now do little without getting exhausted.
When I went in for my clinic visit on Thursday, I had gained 10 pounds since the month before (which really surprised me), and they noticed that my pulse ox was definitely low. The pulse ox is really some kind of saturation level of oxygen in the blood and it should be up near 100%. Mine is usually in the 96 – 98% range, but on Thursday, it was at 90%, which is too low. They had me walk up and down some steps and up and down the hall for a few minutes (which got me breathing pretty hard), and the pulse ox remained at 90%. I thought it would go up at least a little and commented to that effect, to which they responded that at least it didn’t go down. They also noticed that I was retaining a lot of fluids. When they pointed out how swollen my arms and legs were, I was blown away because it was so obvious and I hadn’t noticed it before they pointed it out. Looking at my swollen ankles might lead you to wonder if I was pregnant! I think that would also at least partially explain my weight gain.
After asking me questions, the doctor (who was a new doctor that I had not yet met), started thinking out loud and said that while it might be GvHD, because it can attack anything, it also might be something like a thyroid that has been thrown out of whack in a delayed reaction to chemotherapy. Apparently, the thyroid is the primary regulator of all sorts of bodily functions. After my appointment, they sent me over to the hospital for a chest x-ray. I am also now scheduled for an echocardiogram and a PFT (Pulmonary Function Test) on Wednesday. The PFT I took before my transplant was by far the most strenuous and uncomfortable test I had to endure. Testing my breathing sounds like it should be easy, right? Well, it’s very intense and long. The doctor on Thursday said, “You remember, the test where they yell at you.” The chest x-ray was clear as expected, and I’m sure there will probably be other tests after the ones on Wednesday. I’m scheduled for another clinic visit on Thursday.
So I’m not in a terrible state, but it is a bit discouraging to feel like I’m backsliding a bit after feeling like I was so close to getting off my meds altogether. It’s not fun to be achy all the time, out of breath whenever I exert myself at all, retaining so much fluid that I feel like an over inflated balloon, and still not enjoying the taste of food (getting of the anti-fungal drug didn’t seem to help at all with that), but I’m not suffering a great deal. I’m still certain that the current problem will be diagnosed and treated and I will feel like I’m back on the road to recovery.
To follow up on last month, I did participate in the bone marrow transplant orientation meeting last month and I found it quite rewarding to be there with people (along with families) who are about to go through the process to offer my experience about what it was like, and so they could see that one can come out on the other side with some level of normalcy (I can fake normalcy pretty well J).
I will write here again when I have news, which I hope will be pretty soon.
Love,
Justin
1 Comments:
Dear Justin,
I'm sorry to hear about your soreness, lack of energy, and fluid retention. I'm also sorry to know that your sense of taste isn't bouncing back. Like you, I'm betting that the setbacks are just a blip in the line of your recovery. I'll be thinking of you on Wednesday as you breath hard and get yelled at.
Much love,
Lisa
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