I had my third iron infusion this morning. I really like them because they take a while and I get a nice nap while it's happening. The nurses are also incredibly nice. Part of this is because I'm one of their healthier patients. They are an infusion center and administer a lot of chemotherapy to very sick patients. So, they work to have a happy face for all of their patients, but I'm sure a lot of it is for the cancer patients.
I got my final report from the procedure yesterday, with an all-clear there. They did say that pathology is still planning to rule out celiac disease. I thought they were doing more than that with the biopsy, but if not, there isn't much more to be learned. The nurse told me she doesn't remember a patient with no transglutaminase antibodies who ended up diagnosed with celiac disease, although the opposite can happen. So, the odds of the biopsy finding anything are slim.
In two weeks, I see the hematologist again. We will measure all sorts of things that day and talk about the path forward. If my hemoglobin is a lot better, we will probably continue with the iron infusions until I'm back at a normal level again. If it's not better, I have no idea what's next.
I'm also curious if this will end up being definitively solved, of if I'll simply recover and never know exactly what happened. In some ways, I'd prefer to know, but there are still too many (rare and nasty) reasons out there, and I don't want any of them to be at fault. Things like bone marrow biopsies are procedures I'd prefer to avoid. So, maybe a recovery and a mystery would be OK.
It's hot again today, but I'm hoping to try CrossFit tonight. I am not tolerating the heat very well, but if I take it easy, I might be OK for a moderate workout.
Wednesday, August 19, 2015
Tuesday, August 18, 2015
One more test down
This is probably a key test in figuring out the cause of my anemia. My small intestine isn't absorbing iron, it's not due to the normal cause of celiac disease, so we need another reason.
Today, I had an upper endoscopy test done. I've had this done once before, and I have to admit that today's test was quite unpleasant compared to the test 12 years ago. In the past, patients were allowed to use lidocaine to numb the back of their throats, and this made the insertion of the tube much easier. I guess doctors decided that carried some risk, so it's no longer standard protocol. So, I had the standard mixture of Fentanyl and Versed. And, as they tried to insert the scope, I gagged and choked at least 10 times, to the point where I almost yanked the thing out of the doctor's hand and simply removed it.
Afterward, when I mentioned this to the doc, he said I had a very strong gag reflex. I felt like asking him why he didn't respond to that, but instead forced the tube down my throat anyway. But, I was too angry to say it tactfully, so I said nothing.
The basic test showed no signs of bleeding anywhere, no signs of Barrett's esophagus, esophageal cancer, or stomach cancer or stomach ulcers/bleeding.
So, the answer is hopefully in the bipsy samples they took from my upper small intestine. I should hear more about that by the end of the week or so.
Tomorrow, I get my hemoglobin measured again and I get another iron infusion. I won't be surprised if my hemoglobin is better. I feel a little better, but I'm simply not handling heat at all right now. We've had a few nights where I might have tried the CrossFit workout, but the heat has just been too much.
On Sunday, a very hot day, I alternated between getting stuff done around the house and taking naps in my air conditioned bedroom. I cooked a lot of the day and not one thing I cooked was appealing to me, which was disappointing.
On Monday morning, my weight was 191 - the lowest it's been since the fall of 2009. I've now lost about 37 pounds this year and there is no sign that it's letting up.
In three weeks, I have a colonoscopy, but given my iron absorption numbers, I'll be surprised if that test gives us any useful feedback. But, I'm overdue for the test, so I should have it done. It will be done by the same doc that did my test this morning, and I think I'm going to emphasize that I'd like a bit more pain medicine next time around.
Today, I had an upper endoscopy test done. I've had this done once before, and I have to admit that today's test was quite unpleasant compared to the test 12 years ago. In the past, patients were allowed to use lidocaine to numb the back of their throats, and this made the insertion of the tube much easier. I guess doctors decided that carried some risk, so it's no longer standard protocol. So, I had the standard mixture of Fentanyl and Versed. And, as they tried to insert the scope, I gagged and choked at least 10 times, to the point where I almost yanked the thing out of the doctor's hand and simply removed it.
Afterward, when I mentioned this to the doc, he said I had a very strong gag reflex. I felt like asking him why he didn't respond to that, but instead forced the tube down my throat anyway. But, I was too angry to say it tactfully, so I said nothing.
The basic test showed no signs of bleeding anywhere, no signs of Barrett's esophagus, esophageal cancer, or stomach cancer or stomach ulcers/bleeding.
So, the answer is hopefully in the bipsy samples they took from my upper small intestine. I should hear more about that by the end of the week or so.
Tomorrow, I get my hemoglobin measured again and I get another iron infusion. I won't be surprised if my hemoglobin is better. I feel a little better, but I'm simply not handling heat at all right now. We've had a few nights where I might have tried the CrossFit workout, but the heat has just been too much.
On Sunday, a very hot day, I alternated between getting stuff done around the house and taking naps in my air conditioned bedroom. I cooked a lot of the day and not one thing I cooked was appealing to me, which was disappointing.
On Monday morning, my weight was 191 - the lowest it's been since the fall of 2009. I've now lost about 37 pounds this year and there is no sign that it's letting up.
In three weeks, I have a colonoscopy, but given my iron absorption numbers, I'll be surprised if that test gives us any useful feedback. But, I'm overdue for the test, so I should have it done. It will be done by the same doc that did my test this morning, and I think I'm going to emphasize that I'd like a bit more pain medicine next time around.
Wednesday, August 12, 2015
Still fighting the fight
Last week, I worked as the "fishing instructor" for a local rec department's fishing camp. I got paid a little bit of money, but mostly I did it to help out a friend, who had lost her long-term instructor for the week. Things went just fine, I think I gave the kids some good lessons on ecology and sound environmental fishing practices, and we caught a lot of fish.
I also discovered that 5+ hours on my feet every day was very tiring for me right now, especially because I was up early every morning to get to the camp on time. Not enough sleep and lots of activity just left me tired.
I did manage one CrossFit workout last week, but I did it at a very easy level.
Over the weekend, I got out fishing with a friend, but it was a warm day, and 5 hours on the water was more than enough for me. The rivers are very warm right now and we fished in the middle of the day. My friend caught one small wild rainbow and I got nothing.
Other than that, I tried to sleep as much as I could to recover from the previous week. I managed to do some cooking and mow the lawn, but not much else. Well, I spent 5 hours trying to upgrade my daughter's laptop to Windows 10, but that was merely frustrating rather than tiring. She was still on 8.0, which meant I had to apply updates to that OS, then upgrade to 8.1, apply more updates, and then finally try to get to 10. A tool supplied to MS to skip the reservation process failed for me, so she is now waiting for MS to bless her upgrade request.
On Monday, I wanted to try CF again, but after only a couple minutes of the warm-up, I knew it wasn't there, so I bailed. I was pretty depressed after this. I'm trying my hardest to get plenty of rest, eat well, and follow instructions from my doctor, and I feel like I'm not getting better.
My weight on Sunday dropped under 196 - the lowest it's been since late in 2009. Pants that were too small for me in May are now too large and my belt won't hold them up. I'm running out of clothes that fit.
Tuesday morning, I had another iron infusion. They did a CBC panel while I was there, and I was dismayed to find that my hemoglobin had dropped from 10 to 9.4, very close to the lowest value I've seen so far. Despite that news, I actually felt pretty good on Tuesday. Maybe it was the 90 minute nap I took during the infusion.
I tried the CrossFit workout again that night, with much better results. The strength work included 70 deadlifts in sets of 5, and 35 box jumps, also in sets of 5. I kept the deads light at 155#, but got through that OK. Next was a 7-minute up ladder - 3 ring rows, 3 goblet squats, 6 ring rows, 6 goblet squats, etc. I completed the round of 12 and got 10 additional ring rows. What was encouraging was that I was breathing deeply and feeling like there was actually some oxygen in the air. I don't know how to reconcile that with my poor HGB result earlier in the day, but I was happy to feel good for an entire workout.
Today is a rest day and I'll try again tomorrow.
I also discovered that 5+ hours on my feet every day was very tiring for me right now, especially because I was up early every morning to get to the camp on time. Not enough sleep and lots of activity just left me tired.
I did manage one CrossFit workout last week, but I did it at a very easy level.
Over the weekend, I got out fishing with a friend, but it was a warm day, and 5 hours on the water was more than enough for me. The rivers are very warm right now and we fished in the middle of the day. My friend caught one small wild rainbow and I got nothing.
Other than that, I tried to sleep as much as I could to recover from the previous week. I managed to do some cooking and mow the lawn, but not much else. Well, I spent 5 hours trying to upgrade my daughter's laptop to Windows 10, but that was merely frustrating rather than tiring. She was still on 8.0, which meant I had to apply updates to that OS, then upgrade to 8.1, apply more updates, and then finally try to get to 10. A tool supplied to MS to skip the reservation process failed for me, so she is now waiting for MS to bless her upgrade request.
On Monday, I wanted to try CF again, but after only a couple minutes of the warm-up, I knew it wasn't there, so I bailed. I was pretty depressed after this. I'm trying my hardest to get plenty of rest, eat well, and follow instructions from my doctor, and I feel like I'm not getting better.
My weight on Sunday dropped under 196 - the lowest it's been since late in 2009. Pants that were too small for me in May are now too large and my belt won't hold them up. I'm running out of clothes that fit.
Tuesday morning, I had another iron infusion. They did a CBC panel while I was there, and I was dismayed to find that my hemoglobin had dropped from 10 to 9.4, very close to the lowest value I've seen so far. Despite that news, I actually felt pretty good on Tuesday. Maybe it was the 90 minute nap I took during the infusion.
I tried the CrossFit workout again that night, with much better results. The strength work included 70 deadlifts in sets of 5, and 35 box jumps, also in sets of 5. I kept the deads light at 155#, but got through that OK. Next was a 7-minute up ladder - 3 ring rows, 3 goblet squats, 6 ring rows, 6 goblet squats, etc. I completed the round of 12 and got 10 additional ring rows. What was encouraging was that I was breathing deeply and feeling like there was actually some oxygen in the air. I don't know how to reconcile that with my poor HGB result earlier in the day, but I was happy to feel good for an entire workout.
Today is a rest day and I'll try again tomorrow.
Thursday, July 30, 2015
One cause ruled out
I do not have celiac disease. I had no transglutaminase anti-bodies in my blood.
I had my iron infusion this morning. I hope to be feeling better soon.
I still have to have a colonoscopy and upper endoscopy with a biopsy of the small intestine/duodenum.
I will have another iron infusion in 2 weeks and my blood will be re-tested after that.
The doctor said we may never find the exact cause, and perhaps my double-red blood cell donation in late April was the trigger for all of this.
He expects that I will be under his care for a year or so. It will take that long to get to a stable place and monitor my iron stability for a while.
And, we may still find a cause somewhere. He said if we find a cause, it will probably be the duodenum biopsy that gives us the answer.
I just want to get back to working out. The best news of the day was that my hemoglobin has improved from 9.3 to 10. This is probably just enough of a change that I was able to work out a little bit last night. I'm looking forward to a normal level again, but any improvement is nice to see.
I had my iron infusion this morning. I hope to be feeling better soon.
I still have to have a colonoscopy and upper endoscopy with a biopsy of the small intestine/duodenum.
I will have another iron infusion in 2 weeks and my blood will be re-tested after that.
The doctor said we may never find the exact cause, and perhaps my double-red blood cell donation in late April was the trigger for all of this.
He expects that I will be under his care for a year or so. It will take that long to get to a stable place and monitor my iron stability for a while.
And, we may still find a cause somewhere. He said if we find a cause, it will probably be the duodenum biopsy that gives us the answer.
I just want to get back to working out. The best news of the day was that my hemoglobin has improved from 9.3 to 10. This is probably just enough of a change that I was able to work out a little bit last night. I'm looking forward to a normal level again, but any improvement is nice to see.
Monday, July 27, 2015
Zeroing in
I saw a hematologist on Friday morning. He asked hundreds of questions it seemed. He pored laboriously through my prior labs. He put me on a table and found every lymph node in my body. I'm still sore from that part of the exam. He even confirmed that I'm developing a right side inguinal hernia, which I had suspected earlier in the year after I felt some mild pain after heavy squatting. And, he prescribed a lot more tests. Because I hadn't had any food yet that day, he decided to add an iron absorption test, which requires that the patient be fasting.
Basically, they measured my iron by taking blood. They then had be drink a large quantity of iron in a liquid form, and come back two hours later to see how well my gut was absorbing the iron. This was apparently the only test result that came back on Friday and I got a long phone message from the doctor.
He told me that my starting iron level should have been 35-100 or so (I think this is micro-grams per deciliter, but the units are kind of irrelevant here). But, my starting level was 16. So, despite an iron storage protein level indicating that I am storing plenty of iron, my blood is clearly low in iron.
He also told me that he expected the big dose of iron to push my level to the 100-150 range. Instead, it went to 18 - barely budging.
This means that something is going on in my small intestine, preventing me from absorbing dietary iron.
So, I have to go to the clinic this week and get an intravenous iron infusion. And, I'll get more results today.
Based on what I've read and one of the tests the doctor performed on Friday, I'm guessing that we will find that the cause of the anemia is that I've developed celiac disease, which seems to be a common reason for this problem.
If that is the case, I have to start imagining a life without pizza, bread, and beer and a whole lot of other things that are quite tasty (cookies, for example).
But, I'm getting ahead of myself here, and I need to let the doctor do his work. I am very happy about the iron infusion. It will be nice to finally receive some treatment rather than just tests.
I've obviously stopped taking the iron pills, since my body clearly cannot absorb it anyway.
Basically, they measured my iron by taking blood. They then had be drink a large quantity of iron in a liquid form, and come back two hours later to see how well my gut was absorbing the iron. This was apparently the only test result that came back on Friday and I got a long phone message from the doctor.
He told me that my starting iron level should have been 35-100 or so (I think this is micro-grams per deciliter, but the units are kind of irrelevant here). But, my starting level was 16. So, despite an iron storage protein level indicating that I am storing plenty of iron, my blood is clearly low in iron.
He also told me that he expected the big dose of iron to push my level to the 100-150 range. Instead, it went to 18 - barely budging.
This means that something is going on in my small intestine, preventing me from absorbing dietary iron.
So, I have to go to the clinic this week and get an intravenous iron infusion. And, I'll get more results today.
Based on what I've read and one of the tests the doctor performed on Friday, I'm guessing that we will find that the cause of the anemia is that I've developed celiac disease, which seems to be a common reason for this problem.
If that is the case, I have to start imagining a life without pizza, bread, and beer and a whole lot of other things that are quite tasty (cookies, for example).
But, I'm getting ahead of myself here, and I need to let the doctor do his work. I am very happy about the iron infusion. It will be nice to finally receive some treatment rather than just tests.
I've obviously stopped taking the iron pills, since my body clearly cannot absorb it anyway.
Thursday, July 23, 2015
A sudden turnaround
Last Saturday, I felt terrible and basically napped most of the day. My wife and I had gone to visit her parents, and I had to apologize for how I felt and not being able to stay awake. I did manage to sit down and eat dinner that night though, which I haven't been able to do much recently. Well, I usually eat something, but it's rarely the meal that's been prepared. I think I ate a salad for the first time in a month. This time of year, I am usually eating multiple salads every day, but my appetite has been so messed up, that I have just stayed away from most vegetables for the past month.
Sunday, I felt a little better, but still rested a lot to make sure I'd get through the Neil Young show. Monday, despite a short night of sleep after the show, I felt the best I've felt in a month. But, it was just one good day, and I've had lots of decent days in the past couple months, only to feel terrible the next day.
I even thought about doing CrossFit on Monday, but my wife was exhausted and just wanted to go home after work. I didn't want to try a workout enough to argue with her.
Tuesday, I felt pretty good again. Two days in a row! The only downside is that it was a hot and humid day. I walked for about 1.5 miles at lunch and I was tired after that. My wife went to CrossFit that night, but I didn't want to try a workout in the heat.
Yesterday (Wednesday), I felt decent again. This was really encouraging - three consecutive days of feeling decent. So, I decided to try CrossFit.
The warm-up involved some shoulder mobility work, jumping air squats and 2x100 run. I was amazed that I could breathe OK on the runs. That alone was a huge change. A month ago, despite losing body weight, I was out of breath on even the shortest, slowest runs. That seems to have changed.
The strength workout was 10 rounds of 5 strict presses and 10-20 sit-ups. I opted for only 7 sit-ups and I kept the weights light on the strict presses - 65#-80#. A few months ago, I would have done this workout at 95#-110#. But, I want to ease back in and not get sick again. As it was, 4 sets at 80# was pretty much my limit.
After the lifting portion of the workout, we had a 10 minute workout. My goal was max reps of 1) 10 ball slams (20# - very light for me) and 2) 50 single-under rope jumps. I got six rounds plus 10 more ball slams. I had gotten tired during the workout, but I did OK.
Tonight, we get to choose our own movements, and I plan to do some rowing, pull-ups, push-ups, and deadlifts - all at an easy level.
And then, I can hopefully go to the hematologist tomorrow and tell him that things seem to be improving. I'd still like to understand what caused this, but a permanent recovery is more important to me than knowing why it happened.
Sunday, I felt a little better, but still rested a lot to make sure I'd get through the Neil Young show. Monday, despite a short night of sleep after the show, I felt the best I've felt in a month. But, it was just one good day, and I've had lots of decent days in the past couple months, only to feel terrible the next day.
I even thought about doing CrossFit on Monday, but my wife was exhausted and just wanted to go home after work. I didn't want to try a workout enough to argue with her.
Tuesday, I felt pretty good again. Two days in a row! The only downside is that it was a hot and humid day. I walked for about 1.5 miles at lunch and I was tired after that. My wife went to CrossFit that night, but I didn't want to try a workout in the heat.
Yesterday (Wednesday), I felt decent again. This was really encouraging - three consecutive days of feeling decent. So, I decided to try CrossFit.
The warm-up involved some shoulder mobility work, jumping air squats and 2x100 run. I was amazed that I could breathe OK on the runs. That alone was a huge change. A month ago, despite losing body weight, I was out of breath on even the shortest, slowest runs. That seems to have changed.
The strength workout was 10 rounds of 5 strict presses and 10-20 sit-ups. I opted for only 7 sit-ups and I kept the weights light on the strict presses - 65#-80#. A few months ago, I would have done this workout at 95#-110#. But, I want to ease back in and not get sick again. As it was, 4 sets at 80# was pretty much my limit.
After the lifting portion of the workout, we had a 10 minute workout. My goal was max reps of 1) 10 ball slams (20# - very light for me) and 2) 50 single-under rope jumps. I got six rounds plus 10 more ball slams. I had gotten tired during the workout, but I did OK.
Tonight, we get to choose our own movements, and I plan to do some rowing, pull-ups, push-ups, and deadlifts - all at an easy level.
And then, I can hopefully go to the hematologist tomorrow and tell him that things seem to be improving. I'd still like to understand what caused this, but a permanent recovery is more important to me than knowing why it happened.
Monday, July 20, 2015
Beyond Frustrated
Thursday around noon, I got a call from the hospital where I get my primary health care. They needed me to come in the next day to see a doctor. It was important and related to the lab tests I'd had the previous Friday.
I agreed to be there, but the tone of voice and urgency put me on edge. They made it sound like something new had been found that required immediate intervention. So, for 27 hours, I worried. A lot.
At the appointment, which was with a doctor I have worked with professionally, but whom I'd never seen as a patient, I was confused. After the preliminaries were out of the way, the doctor sat down and said "So, what can I do for you?" I told him that the hospital had scheduled the appointment and I assumed he knew what it was about. I told him about the anemia diagnosis and assumed the visit was related.
He said it sounded like I needed some lab work. I told him that had been done a week ago. Quickly, he pulled up my lab results and we looked at them together. The one odd thing is that my iron levels are fine. I am right near the top end of the normal range. So, he said while I am very anemic (hemoglobin of 9.3, with a reference range of 13.5-17.5, and my last test in April was in the high 17's), it didn't appear to be iron-deficiency anemia. Nonetheless, he didn't want to contradict another provider, so he wants me to continue with the iron supplements. To be honest, that seems dangerous to me.
However, unlike my former primary care doc, he recognized that this was out of his league, and he referred me to a hematologist. I see that doctor this coming Friday.
I first noted (in my training log) that I was feeling bad on May 4th. I've gradually gotten worse by then, a very steady down slope. I've lost 30 pounds. In early June, my primary care doc didn't want to do any blood work, although a very basic blood panel would have shown the anemia. Finally, in July, he had to do the blood work. I can only assume my hemoglobin has been dropping this entire time and it may still be dropping. So, eleven weeks after this all started, I still don't have a complete diagnosis, I have no reason to believe it's not getting worse, and I've had no treatment at all.
My hemoglobin level is at a level where the anemia is considered moderate. If I drop to 8, the rules all change, as I would cross into the "severe" level. Hopefully, I won't have to worry about that, but it would be nice to have a full diagnosis and some sort of progress towards recovery.
Yesterday, my wife and I saw Neil Young here in Vermont. It was a great show - some songs from his new album and a whole lot of classics. He started out acoustic and solo, and after 4 songs, his band joined in. He stayed acoustic until about the mid-point of the show and then switched to an electric guitar. It was his first show in Vermont since he played as part of a group in 1965. That band played one night at a nightclub near Killington and was not invited to return. This return, almost 50 years later, was very successful.
The only downside was being tired. I essentially napped all day just so I'd have energy to get through the show.
I might have written this before, but I honestly feel like I aged 20 years in 2 weeks and it's not getting better. When Neil sang "Old Man" last night, I was standing there, feeling a lot like an old man.
I agreed to be there, but the tone of voice and urgency put me on edge. They made it sound like something new had been found that required immediate intervention. So, for 27 hours, I worried. A lot.
At the appointment, which was with a doctor I have worked with professionally, but whom I'd never seen as a patient, I was confused. After the preliminaries were out of the way, the doctor sat down and said "So, what can I do for you?" I told him that the hospital had scheduled the appointment and I assumed he knew what it was about. I told him about the anemia diagnosis and assumed the visit was related.
He said it sounded like I needed some lab work. I told him that had been done a week ago. Quickly, he pulled up my lab results and we looked at them together. The one odd thing is that my iron levels are fine. I am right near the top end of the normal range. So, he said while I am very anemic (hemoglobin of 9.3, with a reference range of 13.5-17.5, and my last test in April was in the high 17's), it didn't appear to be iron-deficiency anemia. Nonetheless, he didn't want to contradict another provider, so he wants me to continue with the iron supplements. To be honest, that seems dangerous to me.
However, unlike my former primary care doc, he recognized that this was out of his league, and he referred me to a hematologist. I see that doctor this coming Friday.
I first noted (in my training log) that I was feeling bad on May 4th. I've gradually gotten worse by then, a very steady down slope. I've lost 30 pounds. In early June, my primary care doc didn't want to do any blood work, although a very basic blood panel would have shown the anemia. Finally, in July, he had to do the blood work. I can only assume my hemoglobin has been dropping this entire time and it may still be dropping. So, eleven weeks after this all started, I still don't have a complete diagnosis, I have no reason to believe it's not getting worse, and I've had no treatment at all.
My hemoglobin level is at a level where the anemia is considered moderate. If I drop to 8, the rules all change, as I would cross into the "severe" level. Hopefully, I won't have to worry about that, but it would be nice to have a full diagnosis and some sort of progress towards recovery.
Yesterday, my wife and I saw Neil Young here in Vermont. It was a great show - some songs from his new album and a whole lot of classics. He started out acoustic and solo, and after 4 songs, his band joined in. He stayed acoustic until about the mid-point of the show and then switched to an electric guitar. It was his first show in Vermont since he played as part of a group in 1965. That band played one night at a nightclub near Killington and was not invited to return. This return, almost 50 years later, was very successful.
The only downside was being tired. I essentially napped all day just so I'd have energy to get through the show.
I might have written this before, but I honestly feel like I aged 20 years in 2 weeks and it's not getting better. When Neil sang "Old Man" last night, I was standing there, feeling a lot like an old man.
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