Health Update
I've continued to have some respiratory problems - tightness of my throat, shortness of breath, dizziness upon standing, so I called my oncologist. She wanted me to see my primary care physician, with an eye toward having my thyroid re-evaluated. During that meeting we reviewed my symptoms, and though he had a good/low bp, he noted my heart rate was fast. I told him that was happening when I was active but not sitting, which was, along with the respiratory issues, why I'd curtailed exercising.
The area he immediately keyed in on was my blood pressure. He thinks it's possible my bp medication is over-dosed. Apparently a lowish (even good/normal low) combined with fast heart rate can point to this. So here's the course of action:
1. I have a home bp wrist unit. I've been taking multiple readings over the last two days and will continue this for the next two weeks, taking readings both at rest (sitting) and active/standing, noting the bp, heart rate, date, time, condition, etc. At the end of two weeks he'll review this data and correlate my home unit to his office one.
2. He had an EKG done in the office (I don't know the results of that yet, but since it was yesterday I assume it wasn't bad, otherwise I'd have a call asking me to come back in.
3. He sent me for a chest x-ray, which I also did yesterday. I don't have the results of this yet either.
4. I'm going to pick up an oxygen unit at a medical sleep center on Monday. It will be programmed to read my oxygen levels throughout the day and night for 24 hours. I'll return in on Tuesday, and they will immediately download the data and send it to my doc.
5. They're going to set up an appt. for me to have a pulmonary diagnostic test (more on this below).
6. I'll be getting a referral to an endocrinologist to follow up with the thyroid issue.
Pulmonary Diagnostic
I've had the pulmonary diagnostic test both pre-transplant and post-transplant, and describe the test in those sections (see the pages listed to the right side of the home page if you'd like to review the test in detail).
In short, you sit in a both and seal your mouth around a tube that measures your pulmonary abilities while you breath out under controlled conditions. They use several patterns you have to replicate as seen on a screen inside the booth. The very first time I did this test they took an arterial blood sample. Most everyone has experienced blood draws for lab work, but this is typically venal blood - from a vein. Taking blood from an artery is not fun. They generally do it at your wrist, and they have to deep and often probe a bit to get in. The needle is large, and there are a lot of nerves in that area. It was one of my least pleasant tests, but luckily I only had to do it once. I hope they won't need that piece again, since they have my baseline and some follow-up tests for comparison.
At any rate, my post-transplant tests were all lower than the baseline, which was expected early on, since pulminary function would decrease with a new immune system, and hopefully stabilize as the immune system grows and health is regained. There is a general expectation that it will come back near to the baseline level eventually. We'll see if it's near the baseline this time.
Endocrinologist
I detailed my thyroid history early on in the early pages where I discussed my history prior to and during diagnosis. For the 8 months I was feeling progressively more and more sick, prior to diagnosis, my thyroid was working in overdrive. During a 4 month time period I lost over 70 pounds, averaging 3-4 pounds a week. If you ever experience this degree of weight loss, you will know it is not normal! This is, at least in part, why I've been happy with a slow but steady weight loss. As much as I want to lose weight, I never want to lose weight at that rate again. As long as my progress is reasonable, and matched to my own efforts, I can fairly comfortably conclude that the weight loss is a healthy one, and not indicative of disease.
At any rate, they diagnosed my hyperthyroidism at the same time as they diagnosed the lymphoma - both on the heels of the pulminary embolism diagnosis. I immediately started chemo, and medication to treat my fast thyroid. However it turns out that the 8 months of the progressively worsening hyper-condition meant that my thyroid was stressed and beginning to burn out. It slowed, and then moved into the hypo condition, resulting in an even bigger weight gain than the proceeding weight loss before they had the treatment set and stabilized. I've been under the hypothyroid protocol ever since then, to artificially speed up my thyroid. I've been on this medication ever since that time.
My doc drew blood yesterday, and had the three thyroid tests run: TSH, T3, T4. The first two were in range, but the T4 was out of range high. I think the range is something like 7-12.5, and I was at 14.5. I haven't heard from him on this, whether it's significant or not, in light of the other two in-range readings, but I'm sure it's something we'll discuss, or at least I will with an endocrinologist specialist.
Blood Pressure/Heart Rate Readings
When I quote this data in my fitness updates, it's generally from my home/wrist unit. Generally these devices aren't really accurate, but I use it primarily to keep track of trends, since I assume that it may be consistent, even if it's not accurate (consistently low or consistently high, but showing a real trend-line for any changes). We're now going to find out how accurate it is, and therefore where my blood pressure really is.
Generally my readings have been low during the dozen or so readings taken in the last two days (low good). However I definitely had a low heart rate when sitting, and a high one upon standing. I also measured my mothers bp several times for comparison. She's very small, and has had low bp all her life, and in fact sometimes has the problems associated with low bp. Her readings were higher than mine. This may indicate my unit is not only not reading accurately, but is reading high. If my measurements are actually higher than my real bp, my doc may be right, and my actual bp is too low. Once we figure this out he can adjust my medication downward. It's lucky for me there is an easy fix - if this is the problem. I'm hoping it is, as reduced medication AND a problem solved are two very good things!
So for now, no exercise, but continue doing the above. My next INR reading (blood thinner level) is scheduled for Nov. 27th, and on that date I think I'll be meeting with my Primary care physician again to review all the data. He should have it all with the exception of (possibly) the pulminary diagnostic. I'm quite sure I also will not have met with an endocrinologist yet, as those specialists usually have quite full schedules and new patients are often out a ways. We'll see. Here is my blood pressure and heart-rate data so far, from my home/wrist unit:
My readings
125/85 105 (doc's office, after walking the corridors)
110/70 75 (home - sitting)
111/66 71 (home - sitting)
107/72 78 (home - sitting)
125/78 83 (home - sitting)
135/77 134 (home - standing)
104/84 105 (home - standing)
127/82 76 (home - sitting)
134/79 80 (home - standing)
99/79 80 (home - sitting)
127/68 78 (home - sitting)
109/69 80 (home - sitting)
My mom's readings (for comparison):
125/80 95
110/83 93
126/82 105
In the doc's office, my mom's bp is generally 110/65 (sometimes lower), so on average the home readings have been high for her. With a few exceptions, my readings are lower than hers, and definitely show a big difference in heart-rate between sitting and standing. I can't wait to resolve this, as a fast heart-rate is distressing and exhausting. Luckily I've been busy writing, which is a sitting activity.
Can't wait to resolve this issue! I should have another entry before the month is out.
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