I had my six-week flush (of my porta-cath) this last week, and also saw my Oncologist. We reviewed the two major events that had occurred since I'd seen her last; my trip to Mayo Clinic and the recent test protocol for pulmonary embolisms that turned out to be nothing more than a pulled muscle in my back.
I relayed the Mayo physicians recommendation that nuclear imaging tests be reduced and my Oncologist was in full agreement for two reasons: 1) Since I'm just about at the 2 year mark, reduced testing is justified unless anything unusual occurs, and 2) It's best to limit radiation exposure, especially in patients who have had a lot of chemo or radiation as part of their treatment.
So the good news is that I won't have to have any special tests in October at the 2-year post-transplant mark. Since I had a PET scan in June, she suggests we do the next one a year from then, with periodic blood work now and then as required. Since I have to have a flush of my porta-cath every six weeks, they'll draw blood every third or fourth time for general maintenance testing. I also will no longer be getting a bone-marrow biopsy as a diagnostic test (unless there's some medical reason that warrants it).
The negative is that I passed on a flu shot when I saw my general practitioner last month, thinking I'd get it during the October protocol - and I forgot to mention it to my Oncologist. So not only did I not get a flu shot when I could have, but now I've been feeling like I'm coming down with a cold/flu. Today while working on my computer, I wore my headphones, and noticed something I hadn't before - there's some settling in my chest. Headphones let you hear the internal echo of your breathing - try it!
Since I had pneumonia quite a few times in the early years of my illness, I've grown really good at keeping an eye out for early signs of congestion. When I heard that rasping I immediately pulled out my trusty Voldyne 5000 volumetric spirometer.
This is a plastic device with two channels with floaters, and a breathing hose. The purpose of it is to help people gain lung power after a respiratory illness. It's also excellent for getting your lungs open if you start to feel congestion. Pneumonia is caused by water in your lungs. When it first appears it's usually at the bottom of the lungs, and causes the tissue there to stick together. If the water remains trapped there, or increases, little by little your respiratory power will decrease until you have pneumonia. Using the spirometer even just a few times a day can force your lungs open, right down to the bottom, and give your body the opportunity to drain that liquid. I'll give you a couple of websites in case you want to check it out further. The first one shows what the apparatus looks like while the second site explains how it works. I'll summarize those instructions below.
1. http://www.hudsonrci.com/Products/product_indiv.asp?catalog=1&PageID=10&prod_cat=28&prod_subcat=&keywords=
2. http://wiki.answers.com/Q/How_do_you_use_the_voldyne_5000
INSTRUCTIONS:
1. If you look at the apparatus in the first addy, you'll see the two channels and floaters. Seal your lips around the mouthpiece and breathe in slowly.
2. Try to keep the floater on the left in the best box (from top to bottom it's Good, Better, Best, so you're trying to keep the floater low and steady).
3. While keeping the left-hand floater low (in Best) try to get the right hand floater as high as possible.
4. There's a slider on the outside of the right-hand channel and you can position it for your high-point or your target high point, and increase it as your lung power increases. The scale goes from 0 to 5000 ml. (inspired volume). When I was given this device years ago (I was in the hospital with pneumonia) I could barely pass 500. Today I have the slider set for 1500, because the congestion has brought my respiratory rate down.
Do it in sets of 10 breaths once an hour, or a few times a day - it can make a big difference. I can do it much longer if I'm surfing the web and not typing. It can really make a difference quickly.
When you first start out, you can also just try to get the right-hand floater high with hard, deep breaths out, while ignoring the left-hand floater. This can help open your lungs to clear congestion. Ideally you should try to do both. Doing both ensures that you take long, deep breaths that fill your diaphragm, and not just your upper lungs, so that you can force your lungs open completely, and keep the tissue open/separated long enough to start your body's natural fluid-draining process.
Arizona's air is much dryer than Minnesota's, so the extra water in the air is a reminder for me to keep on top of these respiratory exercises. It's good for any respiratory problems (like a collapsed lung, pneumonia, congestion, low respiratory due to being out of shape, etc.). It's amazing how quickly you can cut short a respiratory problem if you recognize the symptoms early and keep on top of it. Get one of these handy-dandy devices, but remember that, for good hygiene, only one person should use it.
It's a real autumn day here in Minnesota, although it's officially still summer. It's a little chilly today, but it looks like we'll have a week of Indian summer next week, which is great since my niece is getting married next Saturday. Fall has always been my favorite season in Minnesota, so I'm enjoying it. I hope you're all having a great September where ever you are!
Saturday, September 22, 2012
Friday, September 7, 2012
Status Update: Sept. 7, 2012
So the week around Labor Day weekend were interesting, but before I give the details, I'll give the conclusion - everything is fine!
The problem started out on Wed. Aug. 28th, with severe spasming and pains along my lower back on the left side, and wrapping up around my ribs on the side. I couldn't really move even a little without that area going nuts (okay, not a medical phrase, but you get my drift). Although I couldn't figure out how it had happened, I assumed I had pulled or strained a muscle. The spasming pain continued on till Friday evening and then began to subside a bit, but when it did I was left with this dull, radiating ache on the left side of my back, mid-way down.
Now as I've indicated in earlier posts, it takes 1-2 years for a new immune system to grow after a bone-marrow or stem-cell transplant, and after about 18 months almost all of my numbers were back in the normal range except for the Creatinine, which is a measure of kidney function. The desired range is 0.5 - 1.5 and I was high throughout that time. Everytime I saw a summary of lab work they would describe the status of that outlier number as 'chronic kidney failure,' which always scared the crap out of me because it sounds so bad. When I asked what it meant, though, they said it's just how they describe the kidney function in that area outside of the range. They also said it could stay the same, get worse, or improve, and since I felt good, I left it at that. With this dull ache in the area of my left kidney, however, I got a little anxious.
Unfortunately by the time I started transitioning my thoughts from 'pulled muscle' to 'kidney problems' I was into the holiday weekend. The pain had diminished, even though it hadn't gone away, though, so I decided to wait it out until Tuesday to see a doctor rather than going in to the emergency room. For a day or so over the weekend, I also experienced a burning sensation upon urination, and began to wonder if perhaps it wasn't actually a third option - kidney stones.
On Tuesday I was able to get an appt. with the doc. She agreed it could be a general kidney issue, or kidney stones, but also, since I had some shortness of breath, that that symptom, along with back pain, could suggest pulmonary embolisms. Now I've had pulmonary embolisms and it didn't feel like that to me, but you don't want to mess with that potential, so she included a test for it. They collected blood and urine for three tests, two for the kidneys and one for a test called the D-Dimer for a clue as to the PE condition.
The urine test came back with no blood traces, which generally eliminates kidney stones - yay!.
The second blood test came back with great news - for the first time since the transplant my creatinine level was in range (1.3 in the 0.5 - 1.5 range) - yay!
The third blood test, the D-Dimer, was going to take a bit longer to read, and she sent me home with the understanding that if it came back with an elevated reading she would be sending me to the hospital for a CT scan. I'd barely pulled into the driveway when I got the call and the news that the test result was indeed out-of-range high, although only slightly so (the desired range is 0.0 - 0.49 and I was at 0.53). So we didn't get out of the car, but instead went on to the hospital - No Yay!
Before I get to the next part, I have to explain that while at the docs, the technicians had had trouble accessing a vein for a blood draw. They'd managed to get into several veins, but couldn't get a blood draw-back. They finally managed it in my hand and recommended that I drink more water as vein problems can be caused by dehydration. This was pretty ironic considering that my last entry, about my mother's health, involved what we finally determined to be dehydration and I've been harping at her ever since to drink more water each day.
How does this fit into the CT scan? To see pulmonary embolisms from a CT scan, they need to power-inject a contrast dye just seconds prior to the scan. The injection is about 20cc's, and it power-injects at a rate of about 5cc's per second. To do this safely you have to have a good vein, or risk blowing it out. Well, they couldn't get a good vein, so they called in a nurse who specialized in IV's. She couldn't get a good vein, so they called in another nurse who was part of their 'flying vascular' team. She used an ultrasound to look for good veins, but was also unsuccessful. After about 10 attempts over the course of 2 hours I was feeling almost faint with the adrenaline response of the deep needle probes that were near a few nerves and arteries, and they gave up.
But they had a backup plan. The other way to assess the potential for pulmonary embolisms is via a nuclear medicine protocol, which involves a regular IV (without a power-injection), a different scanning device, followed by a chest X-Ray. This is a less effective test, but was the only remaining option available. The last vascular nurse had left an IV in my hand for this test.
So off I went to admissions again (they needed to re-admit me to the Nuclear Medicine department). It took a while because that department isn't open 24/7, so they had to call in a technologist from home to run the test. Here's how it works.
1. You lay on a narrow movable tray that slides into/under a scanning device that looks like a cross between a CT scan donut and an X-Ray machine. Before they do the scans you have to breathe in a radioactive mist for about 8 minutes (with your nose plugged and your mouth sealed around the breathing tube so none of the radioactive material gets out of your lungs to contaminate the exterior of the test equipment.
2. After the 8 minutes, they take four scans of your lungs. Each picture takes about 4-6 minutes.
3. After the first set of pictures, they inject a nuclear dye, and remove the IV.
4. The next step is to repeat the 4 scans, although these take place a little bit faster than the first set. Then two sets of images shows the difference between oxygen in and oxygen out of your lungs, and any irregularities that might indicate blood clots there.
5. The last part of the protocol is two chest X-Rays, front and side. I had to go back up to the radiology and imaging department to have these done.
I'd gone in to see the doctor at 2 pm, and by now it was almost 9 pm. At that point I had to wait there until the doctor on staff at the hospital had reviewed the scans, and called the results in to my doctor. Luckily this happened within about 15 minutes of finishing the chest X-Rays. My doc called me and said the tests did not indicate pulmonary embolisms so I could do home.
So, long story short? I spent 7 hours in the doctors office and hospital, with resultant heavy-duty black and blue marks all over my arms and hands, all over what appears to be a strained back muscle. Oh well, at least I learned that my kidneys had finally fallen into the normal, in-range level.
And in summary, my advice is the same as I gave in my last entry - Dehydration Bad! Water Good!
The problem started out on Wed. Aug. 28th, with severe spasming and pains along my lower back on the left side, and wrapping up around my ribs on the side. I couldn't really move even a little without that area going nuts (okay, not a medical phrase, but you get my drift). Although I couldn't figure out how it had happened, I assumed I had pulled or strained a muscle. The spasming pain continued on till Friday evening and then began to subside a bit, but when it did I was left with this dull, radiating ache on the left side of my back, mid-way down.
Now as I've indicated in earlier posts, it takes 1-2 years for a new immune system to grow after a bone-marrow or stem-cell transplant, and after about 18 months almost all of my numbers were back in the normal range except for the Creatinine, which is a measure of kidney function. The desired range is 0.5 - 1.5 and I was high throughout that time. Everytime I saw a summary of lab work they would describe the status of that outlier number as 'chronic kidney failure,' which always scared the crap out of me because it sounds so bad. When I asked what it meant, though, they said it's just how they describe the kidney function in that area outside of the range. They also said it could stay the same, get worse, or improve, and since I felt good, I left it at that. With this dull ache in the area of my left kidney, however, I got a little anxious.
Unfortunately by the time I started transitioning my thoughts from 'pulled muscle' to 'kidney problems' I was into the holiday weekend. The pain had diminished, even though it hadn't gone away, though, so I decided to wait it out until Tuesday to see a doctor rather than going in to the emergency room. For a day or so over the weekend, I also experienced a burning sensation upon urination, and began to wonder if perhaps it wasn't actually a third option - kidney stones.
On Tuesday I was able to get an appt. with the doc. She agreed it could be a general kidney issue, or kidney stones, but also, since I had some shortness of breath, that that symptom, along with back pain, could suggest pulmonary embolisms. Now I've had pulmonary embolisms and it didn't feel like that to me, but you don't want to mess with that potential, so she included a test for it. They collected blood and urine for three tests, two for the kidneys and one for a test called the D-Dimer for a clue as to the PE condition.
The urine test came back with no blood traces, which generally eliminates kidney stones - yay!.
The second blood test came back with great news - for the first time since the transplant my creatinine level was in range (1.3 in the 0.5 - 1.5 range) - yay!
The third blood test, the D-Dimer, was going to take a bit longer to read, and she sent me home with the understanding that if it came back with an elevated reading she would be sending me to the hospital for a CT scan. I'd barely pulled into the driveway when I got the call and the news that the test result was indeed out-of-range high, although only slightly so (the desired range is 0.0 - 0.49 and I was at 0.53). So we didn't get out of the car, but instead went on to the hospital - No Yay!
Before I get to the next part, I have to explain that while at the docs, the technicians had had trouble accessing a vein for a blood draw. They'd managed to get into several veins, but couldn't get a blood draw-back. They finally managed it in my hand and recommended that I drink more water as vein problems can be caused by dehydration. This was pretty ironic considering that my last entry, about my mother's health, involved what we finally determined to be dehydration and I've been harping at her ever since to drink more water each day.
How does this fit into the CT scan? To see pulmonary embolisms from a CT scan, they need to power-inject a contrast dye just seconds prior to the scan. The injection is about 20cc's, and it power-injects at a rate of about 5cc's per second. To do this safely you have to have a good vein, or risk blowing it out. Well, they couldn't get a good vein, so they called in a nurse who specialized in IV's. She couldn't get a good vein, so they called in another nurse who was part of their 'flying vascular' team. She used an ultrasound to look for good veins, but was also unsuccessful. After about 10 attempts over the course of 2 hours I was feeling almost faint with the adrenaline response of the deep needle probes that were near a few nerves and arteries, and they gave up.
But they had a backup plan. The other way to assess the potential for pulmonary embolisms is via a nuclear medicine protocol, which involves a regular IV (without a power-injection), a different scanning device, followed by a chest X-Ray. This is a less effective test, but was the only remaining option available. The last vascular nurse had left an IV in my hand for this test.
So off I went to admissions again (they needed to re-admit me to the Nuclear Medicine department). It took a while because that department isn't open 24/7, so they had to call in a technologist from home to run the test. Here's how it works.
1. You lay on a narrow movable tray that slides into/under a scanning device that looks like a cross between a CT scan donut and an X-Ray machine. Before they do the scans you have to breathe in a radioactive mist for about 8 minutes (with your nose plugged and your mouth sealed around the breathing tube so none of the radioactive material gets out of your lungs to contaminate the exterior of the test equipment.
2. After the 8 minutes, they take four scans of your lungs. Each picture takes about 4-6 minutes.
3. After the first set of pictures, they inject a nuclear dye, and remove the IV.
4. The next step is to repeat the 4 scans, although these take place a little bit faster than the first set. Then two sets of images shows the difference between oxygen in and oxygen out of your lungs, and any irregularities that might indicate blood clots there.
5. The last part of the protocol is two chest X-Rays, front and side. I had to go back up to the radiology and imaging department to have these done.
I'd gone in to see the doctor at 2 pm, and by now it was almost 9 pm. At that point I had to wait there until the doctor on staff at the hospital had reviewed the scans, and called the results in to my doctor. Luckily this happened within about 15 minutes of finishing the chest X-Rays. My doc called me and said the tests did not indicate pulmonary embolisms so I could do home.
So, long story short? I spent 7 hours in the doctors office and hospital, with resultant heavy-duty black and blue marks all over my arms and hands, all over what appears to be a strained back muscle. Oh well, at least I learned that my kidneys had finally fallen into the normal, in-range level.
And in summary, my advice is the same as I gave in my last entry - Dehydration Bad! Water Good!
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