Sorry, this has been a while, although there has been little to report that is positively known. I have a series of X-rays tomorrow morning and an Injectafer treatment tomorrow afternoon. My INR was at 2.6, dropping to 1.7 a week later. Then, I was at 2.7 a week later and will be tested again on Thursday. It is still all over the place, and I am keeping what I eat the same, but it is just up and down.
At least all the test results are back, and we know what the issues are:
- Anemia
- Iron deficiency anemia due to chronic blood loss (defiantly in the stomach and intestines)
- Drug-induced immune hemolytic anemia
It seems like an extensive list, but it is only a list. The most significant issue is the two primary problems have treatments that create problems for each other, the two being bleeding and clots.
The issue we are fighting is blood loss, which means using care for a diet to minimize stomach and intestine issues. Stomach concerns arise from Iron taken orally as it eats in the stomach. I had iron-infused blood infusions weekly for the past several weeks leading up to the Capsule Endoscopy, but the last one resulted in an adverse reaction, so they need to stop those. Therefore, my Iron as of Friday was 7.4, where it had peaked at 10.6. So, we are trying the Injectafer treatment to see how I react.
I can tell the difference between 7.4 and 10.6. At 7.4, I am fragile and turn to food for energy. When my blood sugar was higher for the week, I lost 3 pounds. I gain weight when it is low, and I am famished.
After a long history review, we determined I have probably been low on Iron since 2012 when I was coming off three years of prednisone and then the doses of Levaquin, which causes drug-induced immune hemolytic anemia. I recall having less energy and fighting fatigue since then. The side effect of those medicines is a negative impact on hemoglobin. I have gained 75 pounds since I stopped taking those drugs, and that is the last time I recall feeling full of energy. So, the DR thinks I was low in 2012 and just kept getting lower. I know I am a strong boy; every time I see him, he questions how I keep going like I did. He reminds me that he still wonders how I made it to the emergency room when this all started. He continues to say the activity is good but to use care. Although when I was in the hospital recently and informed him of my activities for the week prior, he did say for me to do about half of what feels OK. I had walked 9 miles, lifted weights, removed a 45-foot-tall tree for Shelley’s daughter, rode a bike 220 miles, and much more the previous seven days. Again, he said to tone it down.
The issue we are fighting is blood loss, which means using care for a diet to minimize stomach and intestine issues. Stomach concerns arise from Iron taken orally as it eats in the stomach. I had iron-infused blood infusions weekly for the past several weeks leading up to the Capsule Endoscopy, but the last one resulted in an adverse reaction, so they need to stop those. Therefore, my Iron as of Friday was 7.4, where it had peaked at 10.6. So, we are trying the Injectafer treatment to see how I react.
I can tell the difference between 7.4 and 10.6. At 7.4, I am fragile and turn to food for energy. When my blood sugar was higher for the week, I lost 3 pounds. I gain weight when it is low, and I am famished.
After a long history review, we determined I have probably been low on Iron since 2012 when I was coming off three years of prednisone and then the doses of Levaquin, which causes drug-induced immune hemolytic anemia. I recall having less energy and fighting fatigue since then. The side effect of those medicines is a negative impact on hemoglobin. I have gained 75 pounds since I stopped taking those drugs, and that is the last time I recall feeling full of energy. So, the DR thinks I was low in 2012 and just kept getting lower. I know I am a strong boy; every time I see him, he questions how I keep going like I did. He reminds me that he still wonders how I made it to the emergency room when this all started. He continues to say the activity is good but to use care. Although when I was in the hospital recently and informed him of my activities for the week prior, he did say for me to do about half of what feels OK. I had walked 9 miles, lifted weights, removed a 45-foot-tall tree for Shelley’s daughter, rode a bike 220 miles, and much more the previous seven days. Again, he said to tone it down.
Since the original clots were found, others formed. Last weekend, one formed in my right leg, which resulted in another hospital visit. I also have had some extraordinary chest pains that do not appear to be an issue; it scares me when that occurs. The first few times, I went to the ER and was checked out. In one case, my blood pressure was 174 over 130. However, a few hours later, it was back to normal in the mid-130s over the low 80s.
I am having surgery on October 25 with a twofold objective. To evaluate the success of the medicine regime and to initiate some endoscopic therapy on the esophagus and digestive system. They also want to stabilize the hernia issues. They state I will most likely have surgery next spring, after the clot issue is resolved, to resolve the hiatal hernia issue.
It is a long, stretched-out process that should allow me to be OK. There is only a little to report after the October 25 surgery. I may write after two Injectafer treatments (One tomorrow and one on September 15) to let you know how the iron levels are and how the INR is doing.
I do plan on driving to Colorado on the 21st. Now, I may cancel that trip unless I know the clotting issue is under control. I plan on taking the camera and stopping every 90-120 minutes for a 20-minute stroll and picture-taking. That should add nearly 3 hours to the 12.5-hour drive but minimize concerns.
Anyway, in words I have spoken so often recently that it naturally comes off the tongue, “I would rather die living and live dying.” I am taking care and doing everything directed by the four physicians I see all too often, but I do not dwell on all this much.
1 comment:
Thanks for the updates. That is quite the list of diagnosis (thanks for the links as there were several I was not familiar with). Have they had any luck sorting out what foods are triggering the EOE?
INR is can be very hard to manage in someone who is not also dealing with other major health issues. Despite keeping your diet stable, your overall health and medications, can also have a significant impact on how your body processes the warfarin. It is very frustrating for patient's (and their health care providers) to sort out and find a dose that will keep you in range.
Hang in there. Sounds like you are getting some answers, but it will be a long road to recovery. And you are strong!
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