Guest guest Posted November 3, 2010 Report Share Posted November 3, 2010 Barb, Thanks. You wrote: > > Your son sounds like a living miracle! I can't imagine how difficult it > must have been for you and your family to go through all those > procedures. It's good news that he seems to be " back to normal. " I pray > he will continue to improve, and be able to put all of this behind him. He was literally called the " miracle baby " after his first surgery at 10 days of age (pulmonary valvulotomy). The doctors told us he had a " 50/50 " chance of survival. What they didn't tell us was that he was the third baby EVER in that region (Phoenix, Arizona) to attempt it. The first two had both died on the operating table. At that time, they did not have any sort of heart/lung machine for infants. They had to open him up, stop his heart, and fix the problem in less than a minute, so they could start the heart again without brain damage. His second open heart procedure at age five repaired several problems (ligation of patent ductus arteriosis, atrial-septal defect closure, and resection of the pulmonary valve) that could not be completed in the one minute operation the first time. The reason he had all these problems turned out to be something called Noonan's Syndrome, which impairs the formation of connective tissue. Although our joints, muscles, and tendons can work with reduced connective tissue, the heart does not do as well. It particularly affects the valves. Mike's last surgery replaced both his mitral and pulmonary valves completely. His thyroid problems developed immediately after the surgery. They did a LOT of radiography on top of what he had had with previous procedures, including the spinal fusion. I left out all the extra hospitalizations, at least one after each surgery. We have learned to be VERY careful about doctors and the decisions they make. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Welll that settles it Chuck. He IS a living miracle! How precious and special he must be to you. It sounds like you have had to struggle for him his entire life. Apparently you've done a very good job of choosing doctors and being involved in the decisions that have been made. I pray for much better days ahead for your son, you, and your family. Barb Re: Question About Scan Barb, Thanks. You wrote: > > Your son sounds like a living miracle! I can't imagine how difficult it > must have been for you and your family to go through all those > procedures. It's good news that he seems to be " back to normal. " I pray > he will continue to improve, and be able to put all of this behind him. He was literally called the " miracle baby " after his first surgery at 10 days of age (pulmonary valvulotomy). The doctors told us he had a " 50/50 " chance of survival. What they didn't tell us was that he was the third baby EVER in that region (Phoenix, Arizona) to attempt it. The first two had both died on the operating table. At that time, they did not have any sort of heart/lung machine for infants. They had to open him up, stop his heart, and fix the problem in less than a minute, so they could start the heart again without brain damage. His second open heart procedure at age five repaired several problems (ligation of patent ductus arteriosis, atrial-septal defect closure, and resection of the pulmonary valve) that could not be completed in the one minute operation the first time. The reason he had all these problems turned out to be something called Noonan's Syndrome, which impairs the formation of connective tissue. Although our joints, muscles, and tendons can work with reduced connective tissue, the heart does not do as well. It particularly affects the valves. Mike's last surgery replaced both his mitral and pulmonary valves completely. His thyroid problems developed immediately after the surgery. They did a LOT of radiography on top of what he had had with previous procedures, including the spinal fusion. I left out all the extra hospitalizations, at least one after each surgery. We have learned to be VERY careful about doctors and the decisions they make. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 On 11/3/2010 5:30 PM, Roni Molin wrote: > Well I think I mentioned that diuretics give me atrial fibrillation > attacks the next morning. Draining out that fluid so fast probably > adversely affects the heart, so it does make sense to me that the doctor > is checking that. He sounds like a good doctor. In Mike's case, the rapid draining helps prevent heart failure, but it could have other consequences, if we don't monitor to keep everything in bounds. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 I may be dense tonight because of ANOTHER afib episode today, but I it doesn't make sense to me now either. Maybe you could clarify? I'd appreciate it. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > > > Will the uptake test or the scan show if I have Cancer? ... > > No, it shows whether the nodules are actively producing hormones or not. > Since the biopsy carries some risk of opening an otherwise enclosed > nodule, logic requires they rule out benign conditions before the biopsy. > > Thanks Chuck. I understand the reason for the uptake test, but not the scan. > One of the key indicators is how rapidly something is changing or growing. They may be wanting a baseline image for that. However, the ultrasound can also measure size, and it does not use ionizing radiation. Also, if they can get two tests off one dose of iodine, then they might as well get all the information they can get. My sources said the uptake test required much less activity than the scan, so this possible explanation would not have made sense before. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Make that ditto for me. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > Your son sounds like a living miracle! I can't imagine how difficult it > must have been for you and your family to go through all those > procedures. It's good news that he seems to be " back to normal. " I pray > he will continue to improve, and be able to put all of this behind him. He was literally called the " miracle baby " after his first surgery at 10 days of age (pulmonary valvulotomy). The doctors told us he had a " 50/50 " chance of survival. What they didn't tell us was that he was the third baby EVER in that region (Phoenix, Arizona) to attempt it. The first two had both died on the operating table. At that time, they did not have any sort of heart/lung machine for infants. They had to open him up, stop his heart, and fix the problem in less than a minute, so they could start the heart again without brain damage. His second open heart procedure at age five repaired several problems (ligation of patent ductus arteriosis, atrial-septal defect closure, and resection of the pulmonary valve) that could not be completed in the one minute operation the first time. The reason he had all these problems turned out to be something called Noonan's Syndrome, which impairs the formation of connective tissue. Although our joints, muscles, and tendons can work with reduced connective tissue, the heart does not do as well. It particularly affects the valves. Mike's last surgery replaced both his mitral and pulmonary valves completely. His thyroid problems developed immediately after the surgery. They did a LOT of radiography on top of what he had had with previous procedures, including the spinal fusion. I left out all the extra hospitalizations, at least one after each surgery. We have learned to be VERY careful about doctors and the decisions they make. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Chuck, do you have any ideas about how I can drain this awful swelling of my feet, ankles and legs? I can't fit into most of my shoes, my feet and legs hurt, but I'm afraid to take the diuretics because of the ensuing afib. The potassium seemed to help for a while and it all went down. Now it's back up again. The attack finally stopped and I just took my pulse, which is 64. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > Well I think I mentioned that diuretics give me atrial fibrillation > attacks the next morning. Draining out that fluid so fast probably > adversely affects the heart, so it does make sense to me that the doctor > is checking that. He sounds like a good doctor. In Mike's case, the rapid draining helps prevent heart failure, but it could have other consequences, if we don't monitor to keep everything in bounds. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 I think the balance of the blood thinner is critical. I suspect it is relatively easy to balance in most people but not all. My brother was put on coumadin after a heart valve replacement and they never seemed to be able to balance it properly. I strongly suspect that was a huge factor in a series of problems culminating in strokes and eventually death. Fortunately it seems most people don't have these problems; I talk to a lot of people and once it's adjusted they never seem to have any more problems. Best of luck with your son. Regards, .. .. > > Posted by: " ChuckB " gumboyaya@... > <mailto:gumboyaya@...?Subject=%20Re%3A%20Question%20About%20Scan> > gumbo482001 <gumbo482001> > > > Wed Nov 3, 2010 3:23 pm (PDT) > > > > Roni, > > You wrote: > > I feel so bad for your son. He's gone through so much, and of course, > > you and your wife, as his parents went through it all with him. I pray > > that he will be healthy now and not need any more procedures. He's a > > brave kid. > > > > I have a question, how do you monitor the potassium? > > He was getting a blood draw every other week for INR (thinner) and > potassium. His endo wants to look at another panel that includes > potassium every week for awhile. I'm not sure what he is fishing for, at > least not exactly. One of his cardiac issues force us to give him > whopping diuretics, so we have to work to keep the electrolytes up. > Normally, they take weeks between checks on the thinner, but his current > situation requires all of these to be monitored more frequently. > > Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Soon, there will be a new drug blood thinner on the market that does not have the problems of coumadin, and will not require the constant testing. It was recently approved, and we should be seeing it hopefully soon. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > I feel so bad for your son. He's gone through so much, and of course, > > you and your wife, as his parents went through it all with him. I pray > > that he will be healthy now and not need any more procedures. He's a > > brave kid. > > > > I have a question, how do you monitor the potassium? > > He was getting a blood draw every other week for INR (thinner) and > potassium. His endo wants to look at another panel that includes > potassium every week for awhile. I'm not sure what he is fishing for, at > least not exactly. One of his cardiac issues force us to give him > whopping diuretics, so we have to work to keep the electrolytes up. > Normally, they take weeks between checks on the thinner, but his current > situation requires all of these to be monitored more frequently. > > Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 On 11/3/2010 8:59 PM, Roni Molin wrote: > I may be dense tonight because of ANOTHER afib episode today, but I it > doesn't make sense to me now either. Maybe you could clarify? I'd > appreciate it. I'm not sure what you want clarified. The guidelines I found from the Am. Radiological Soc. said the image required significantly more radioactive iodine than the uptake test. However, the clinic told her they use exact the same amount and could do both tests on the same dose. I was speculating on why they might want the image, when they don't know for certain they will be doing surgery. I would be asking them more questions, in particular what dose they are planning to use. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Roni, You wrote: > Chuck, do you have any ideas about how I can drain this awful swelling > of my feet, ankles and legs? I can't fit into most of my shoes, my feet > and legs hurt, but I'm afraid to take the diuretics because of the > ensuing afib. The potassium seemed to help for a while and it all went > down. Now it's back up again. The attack finally stopped and I just took > my pulse, which is 64. Magnesium? Mike takes heavy duty diuretics and lots of potassium, but he does not have the afib. Don't they have a medication that suppresses afib so you could take a diuretic? My wife takes atenolol, but that is for blood pressure. Another one is metoprolol. Have you been checked for hypertension or sleep apnea? Have they put you on a blood thinner? Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Thank you for the clarification. I'd want to know the answers to those questions if I were going for it too. Did you read the new news about low dose CT scans of the chest to screen for lung cancer? They supposedly catch it much earlier and therefore (according to them) save more lives. There is a 25% false reading result too, so I wonder how they figure out which ones are false and which ones true. It would seem to me that would require more testing of some sort or another. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > I may be dense tonight because of ANOTHER afib episode today, but I it > doesn't make sense to me now either. Maybe you could clarify? I'd > appreciate it. I'm not sure what you want clarified. The guidelines I found from the Am. Radiological Soc. said the image required significantly more radioactive iodine than the uptake test. However, the clinic told her they use exact the same amount and could do both tests on the same dose. I was speculating on why they might want the image, when they don't know for certain they will be doing surgery. I would be asking them more questions, in particular what dose they are planning to use. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > Chuck, do you have any ideas about how I can drain this awful swelling > of my feet, ankles and legs? I can't fit into most of my shoes, my feet > and legs hurt, but I'm afraid to take the diuretics because of the > ensuing afib. The potassium seemed to help for a while and it all went > down. Now it's back up again. The attack finally stopped and I just took > my pulse, which is 64. Magnesium? Mike takes heavy duty diuretics and lots of potassium, but he does not have the afib. Don't they have a medication that suppresses afib so you could take a diuretic? My wife takes atenolol, but that is for blood pressure. Another one is metoprolol. Have you been checked for hypertension or sleep apnea? Have they put you on a blood thinner? Chuck I can't take beta blockers because of asthma. I don't have hypertension normally, but of course in an afib episode my pressure does go up. I'm not on a blood thinner but I do take nattokinase and Hawthorn, both recommended by one of my cardios. When I get an afib attack I also chew 4 baby aspirins, as per one of the EMTs that had to come to my house. I haven't had to call them in a long while because I take Flecainide, 1- 50mg per hour up to total of 4, plus 1- 5mg valium at the start. The protocol seems to work, but the afib episodes are getting closer together. When do you give your son the potassium, in relation to the diuretic? Right now I take one magnesium pill in the morning with a 99mg potassium pill. I do have 10meq potassium capsules, but I got the afib the next morning after the diuretic anyway. Roni ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Chuck, I thought you sent an e-mail which incuded the radioactive dose, but can't find it. Did you? I recall reading an e-mail that said I should ask what dose would be given. This morning I found out it's 3 millicuries of radioactive iodine. Do you know if that is the amount that is usually given for the radioactive iodine uptake test? I told the person in nuclear medicine that I understand the reason for the uptake test, but not the scan. She told me it's one test and they're done together. Apparently they don't do one without the other at that location. She also told me she doesn't know the reason for the scan. I'll call back again and try to find out from a radiologist before I take it. Is this unebelievable or what? I've asked why I need it, what result they're looking for, what it's purpose is, what it determines, etc., but still no answers. Again I saw the incompetence here. Tuesday I asked my doctor's office to reschedule the scan, since I found out I wouldn't be able to take it on Wednesday, because no one had told me to stop the thyroid medication for three weeks before it. This morning after calling back, the doctor's office told me I had to schedule it myself through Nuclear Medicine. When I told her the doctor's office had scheduled the first one, she said that person sent a request for scheduling, and is off anyway. Today a woman in Nuclear Medicine said the doctor's office had to reschedule it. Then she told me my doctor would have to tell me the amount of radioactive iodine in the pill. After I told her he doesn't have a clue, and didn't even know I was supposed to withhold medication for three weeks, she found out for me. Then she proceeded to schedule the test for one week from now! That was after I told her it needed to be three weeks out. Now it won't be done until 11-30. I plan to call the Mayo Clinic back today, and she if they have any idea when an appointment might be scheduled there. Lucky me! I'm grateful to have been blessed with good healh most of my life. I sincerely hope most people don't have this much trouble working with doctors, scheduling tests, extracting information, and having such a long wait to find out what's wrong with them. Thanks, Barb Re: Question About Scan On 11/3/2010 8:59 PM, Roni Molin wrote: > I may be dense tonight because of ANOTHER afib episode today, but I it > doesn't make sense to me now either. Maybe you could clarify? I'd > appreciate it. I'm not sure what you want clarified. The guidelines I found from the Am. Radiological Soc. said the image required significantly more radioactive iodine than the uptake test. However, the clinic told her they use exact the same amount and could do both tests on the same dose. I was speculating on why they might want the image, when they don't know for certain they will be doing surgery. I would be asking them more questions, in particular what dose they are planning to use. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 I found the e-mail Chuck. This one didn't give an amount, but did say I should ask about the dose. Barb I'm not sure what you want clarified. The guidelines I found from the Am. Radiological Soc. said the image required significantly more radioactive iodine than the uptake test. However, the clinic told her they use exact the same amount and could do both tests on the same dose. I was speculating on why they might want the image, when they don't know for certain they will be doing surgery. I would be asking them more questions, in particular what dose they are planning to use. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Chuck, do you have any ideas about how I can drain this awful swelling of my feet, ankles and legs? I can't fit into most of my shoes, my feet and legs hurt, but I'm afraid to take the diuretics because of the ensuing afib. The potassium seemed to help for a while and it all went down. Now it's back up again. The attack finally stopped and I just took my pulse, which is 64. <>Roni Roni, I'm sorry you're having these problems, and hope they are resolved SOON. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Thanks, Barb - me too. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> From: H <macbarb0503@...> Subject: Re: Question About Scan hypothyroidism Date: Friday, November 5, 2010, 7:24 AM Chuck, do you have any ideas about how I can drain this awful swelling of my feet, ankles and legs? I can't fit into most of my shoes, my feet and legs hurt, but I'm afraid to take the diuretics because of the ensuing afib. The potassium seemed to help for a while and it all went down. Now it's back up again. The attack finally stopped and I just took my pulse, which is 64. <>Roni Roni, I'm sorry you're having these problems, and hope they are resolved SOON. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 Roni, You wrote: > > When do you give your son the potassium, in relation to the diuretic? He gets two diuretics, one in the morning only, the other morning and night. If I am reading the label correctly, he gets 1560 MEq of potassium twice a day. That is a total of 99 grams of KCl per day. Different ballpark. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 On 11/5/2010 9:12 AM, H wrote: > > Chuck, > > I thought you sent an e-mail which incuded the radioactive dose, but > can't find it. Did you? I recall reading an e-mail that said I should > ask what dose would be given. This morning I found out it's 3 > millicuries of radioactive iodine. Do you know if that is the amount > that is usually given for the radioactive iodine uptake test? As I recall, the guideline said the image required 5 mCi, while the scan needed 0.1 mCi. Sounds as if they are splitting the difference to do both in one test. In both cases the issue is time. You can usually work with less activity, if you are willing to scan for a proportionally longer time. For the image, that means you have to sit very still for a longer time. You seem to be dealing with Keystone Cops. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 That IS a different ball game. I'm sure you've looked into the effects of long term use of diuretics. I hope he won't have to be on them for a long time. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > When do you give your son the potassium, in relation to the diuretic? He gets two diuretics, one in the morning only, the other morning and night. If I am reading the label correctly, he gets 1560 MEq of potassium twice a day. That is a total of 99 grams of KCl per day. Different ballpark. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 During my mom's terminal congestive heart failure while it was still being treated the doctor attempted to limit her salt and gave her potassium. She hated the potassium due to the taste, and wanted more salt. My brother was her caretaker at the time and tried to keep her salt and potassium intake in line with what the doctor ordered. At one point she became very ill and was taken to the hospital and it was found that her potassium levels had gone very high and her salt level too low. So I suspect that like most things there's an upper limit to what is useful at which point it may become harmful... And further, that amount probably varies from person to person. Again, best of luck with your son's health, .. .. > Posted by: " ChuckB " gumboyaya@... > <mailto:gumboyaya@...?Subject=%20Re%3A%20Question%20About%20Scan> > gumbo482001 <gumbo482001> > > > Fri Nov 5, 2010 7:59 pm (PDT) > > > > Roni, > > You wrote: > > > > When do you give your son the potassium, in relation to the diuretic? > > He gets two diuretics, one in the morning only, the other morning and > night. If I am reading the label correctly, he gets 1560 MEq of > potassium twice a day. That is a total of 99 grams of KCl per day. > > Different ballpark. > > Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 Yes, absolutely, there is a balancer that's supposed to be maintained. I firmly believe that when my body is craving fruit it's because it needs whatever is in the fruit, and when my body is craving something salty it's because it needs the salt at that moment. My lab reports are all with range, and my salt level is towards the bottom of the range, and the potassium above mid range. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > > > When do you give your son the potassium, in relation to the diuretic? > > He gets two diuretics, one in the morning only, the other morning and > night. If I am reading the label correctly, he gets 1560 MEq of > potassium twice a day. That is a total of 99 grams of KCl per day. > > Different ballpark. > > Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 On 11/6/2010 12:43 AM, Roni Molin wrote: > That IS a different ball game. I'm sure you've looked into the effects > of long term use of diuretics. > I hope he won't have to be on them for a long time. Unfortunately, the need is probably permanent. Most of the long term complications involve conflicts with other drugs that are not a problem, at least not yet. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 , You wrote: > > ... At one point she became very ill and was taken to the hospital and it > was found that her potassium levels had gone very high and her salt > level too low.... That's why we carefully monitor potassium and sodium, almost as frequently as the INR (blood thinner). Mike was hospitalized twice with low potassium, when his previous cardiologist (we fired him) tried to put him on a potassium sparing type of diuretic. After the first lost weekend, he decided the dose of the new diuretic was not high enough. That cost an entire week. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2010 Report Share Posted November 8, 2010 He is very lucky to have someone like you looking out for him. I sincerely wish you both the best. Regards, .. .. > Posted by: " ChuckB " gumboyaya@... > <mailto:gumboyaya@...?Subject=%20Re%3A%20Question%20About%20Scan> > gumbo482001 <gumbo482001> > > > Sun Nov 7, 2010 3:41 pm (PST) > > > > , > > You wrote: > > > > ... At one point she became very ill and was taken to the hospital > and it > > was found that her potassium levels had gone very high and her salt > > level too low.... > > That's why we carefully monitor potassium and sodium, almost as > frequently as the INR (blood thinner). Mike was hospitalized twice with > low potassium, when his previous cardiologist (we fired him) tried to > put him on a potassium sparing type of diuretic. After the first lost > weekend, he decided the dose of the new diuretic was not high enough. > That cost an entire week. > > Chuck Quote Link to comment Share on other sites More sharing options...
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