I went to meet with a nutritionist on Thursday. He had me in for a pretty big test (full body bone density test) immediately, but then told me that it "never happened" because my insurance won't cover it. He said that he can tell my body fat percentage by my bone density, but it came back as 51%. Now, I don't know what the "normal" percentage is, but I am thinking that in my case, this test is not all that accurate. I am NOT saying that I am not fat, what I am saying is that this is not ALL fat. 100lbs in about 3 days, remember. 100lbs of fluid. Anyway, I don't really know what to think right now, but I am trying to keep an open mind becuase he seems like he wants to know what is going on and help me. He was not given any medical history on me, so I stopped him and filled him in a bit before anything else. I have an appointment with him in a month, and he asked "How much do you think you can lose in a month?" and I said "I really don't know, I could lose 20 in a week and gain 30 in an hour- there is no rhyme or reason to any of this." We shall see, I guess. (I think my weigh-in at that appointment was 244lbs.)
Later that day, I got a call DIRECTLY from my endocrinologist regarding some blood work that "should have been flagged a couple of weeks ago" and got some good advice for the follow-up with my PCP. What she said was that my white count is high. It has been consistently high for a while. She understands why some doctors would blow this off as being nothing to worry, but given the circumstances, she feels it needs to be investigated. She also said that I should not discuss my diabetes with my PCP at my appointment, because I need to focus on why I was hospitalized and such. She said to bring up the white count, and that we'd deal with moving forward with diabetes things the next time I see her (which is relatively soon).
Also later that day, I was at a rehearsal and I was overcome with extreme sharp pain again. I could not hold back the tears. It was brutal. I hadn't been taking my pain medicine (I tend to try to not take anything extra on top of the huge cocktail of stuff I am required to take..) and I didn't have any with me. Luckily, one of my friends gave me a ride home. I took pain medicine and slept for a short while before it was time to get going to see the PCP.
The PCP took blood for a potassium level check, since it had been low at the hospital. She also wants me to see a hematologist. I have to check with her and see if that will be set up through her office or if she has someone that she wants me to call.
Showing posts with label nephrology. Show all posts
Showing posts with label nephrology. Show all posts
Saturday, April 3, 2010
Sunday, March 29, 2009
Yo-yo-ing again.
It seems to be the favourite game of the medical profession.
To use me as a yo yo and not give me any answers at all.
I had laser eye surgery on my left eye on Wednesday. They gave me percocet before the procedure this time to lessen the pain during the procedure, and the doctor did not wipe out the gel from my eye afterward to avoid me getting another corneal abrasion. I was also given a prescription for Acular just as a precautionary measure. I should be getting a phone call from the office about setting up one more surgery for the right eye, and then I will have to have an office visit because he is not sure if they will be able to treat 100% of the vessels due to the fact that I have cataratcs. I've had cataracts for over 10 years, mind you, and they do not affect my vision, according to the doctor, but it affects the laser's ability to get to the blood vessels, I guess, and I am assuming that is what has to be disgussed.
On Thursday, I had a regular gyn appointment and my doctor was shocked at my weight gain and inability to move and at the brief synopsis of what I have been through. He said when I was there 3 times ago, I was 170lbs, when I was there in October, I was 212 (this was when this was all starting to get really, really bad- it started on May 9th, 2008 to be precise) and he had me logged as 245lbs for that day, but that was being generous. I am more like 250lbs and it is scary as all get out. He did his exam and then told me that I should go to the urgent care walk-in because they would be able to send me to someone who could help, or at least point me in the right direction. Sadly, after waiting through registration, and then waiting again to be traiged and such, I was told to "go to the ER" even though I explained that I have in fact BEEn to the ER many times and I am always told that I need to leave because I "won't die today". Well excuse me if I'd like to get this taken care of BEFORE I get to the point of being at the day where I AM there because I am about to die...
I went home. Nothing more I can do. I have a nephrology appointment with an "associate"of the "colleague" of the nephrologist I saw a couple of weeks ago who wanted me to get the "second opinion" tomorrow morning. I don't know what to expect, but I hope for the best.
I also have an appointment with my PCP on Tuesday. I don't expect much from that at all. Here's hoping though.
To use me as a yo yo and not give me any answers at all.
I had laser eye surgery on my left eye on Wednesday. They gave me percocet before the procedure this time to lessen the pain during the procedure, and the doctor did not wipe out the gel from my eye afterward to avoid me getting another corneal abrasion. I was also given a prescription for Acular just as a precautionary measure. I should be getting a phone call from the office about setting up one more surgery for the right eye, and then I will have to have an office visit because he is not sure if they will be able to treat 100% of the vessels due to the fact that I have cataratcs. I've had cataracts for over 10 years, mind you, and they do not affect my vision, according to the doctor, but it affects the laser's ability to get to the blood vessels, I guess, and I am assuming that is what has to be disgussed.
On Thursday, I had a regular gyn appointment and my doctor was shocked at my weight gain and inability to move and at the brief synopsis of what I have been through. He said when I was there 3 times ago, I was 170lbs, when I was there in October, I was 212 (this was when this was all starting to get really, really bad- it started on May 9th, 2008 to be precise) and he had me logged as 245lbs for that day, but that was being generous. I am more like 250lbs and it is scary as all get out. He did his exam and then told me that I should go to the urgent care walk-in because they would be able to send me to someone who could help, or at least point me in the right direction. Sadly, after waiting through registration, and then waiting again to be traiged and such, I was told to "go to the ER" even though I explained that I have in fact BEEn to the ER many times and I am always told that I need to leave because I "won't die today". Well excuse me if I'd like to get this taken care of BEFORE I get to the point of being at the day where I AM there because I am about to die...
I went home. Nothing more I can do. I have a nephrology appointment with an "associate"of the "colleague" of the nephrologist I saw a couple of weeks ago who wanted me to get the "second opinion" tomorrow morning. I don't know what to expect, but I hope for the best.
I also have an appointment with my PCP on Tuesday. I don't expect much from that at all. Here's hoping though.
Friday, March 20, 2009
I am so confused.
As previously noted, the allergist had his secretary call to cancel my appointment for today, even though I bent over backwards to make sure he had everything he "needs" after he threw me out without running the tests LAST WEEK when he was supposed to do them.
I showed up today and simply greeted the secretary politely and quietly and said that I wanted all of the records that I had brought in returned to me right then and there, and also the records of the tests he had done, since he had outright refused to tell me the results when they came in while I was in the office a week ago. (He actually claimed that they were not there, but I know that they were because my PCP said they were and teh secretary told me that those were what she brought in while I was in there.)
She said that she was told that all of the results were "normal" (mind you, I had to wait for these records to be faxed over because supposedly when they arrive (even though I had requested them the week before- copies for myself, that is) the doctor scans them into a computer and shreds the paper. Okay, except why didn't he just mail me the paper copy since I wanted them anyway?
Anyway, the results show a few flags for abnormality:
White Blood Count 11.1 Normal is 4.0-11.0 so that is not TOO bad and is certainly lower than I have been... but it is still flagged.
MPV is flagged because it is 12.2 and normal is 9.6-12.0, Carbon Dioxide is 32, normal is 20-31.
Total Bilirubin is 0.2 and normal is 0.3-1.2
Three things that stand out as BIG TIME NOT NORMAL are:
1~ Complement 3, Serum- 169- normal is 79-152
2~ My sedimentation rate is 47, and normal is 0-20.
3~ Anti Nuclear Antibody test was POSITIVE.
These are all a pretty big deal, from what I gather, and not only was I not contacted with the information, I was outright lied to in being told it was not there AND I was refused treatment due to a lack of paperwork that had nothing to do with the tests that (still) need to be done.
Now, moving on to the kidney doctor, I went on March 11th for an appointment, and the doctor said to come off of the Bumex. She said (in front of my mother) that if I was on diuretics that I "would wind up on dialysis and die" so I need to stop immediately. I'd already taken the Bumex for the day, so I stopped the next day. She also said that she wants me to see a colleague of hers at a major hospital and that it is urgent that I do so, but that I need to get some testing done, so she took blood and urine tests and said to come back in a week.
My WBC was 11.3- normal according to this one is 10.3- either way, still high.
Osmolality urine listed at 362 with normal being 500-800.
Now, she didn't mention anything about this to me, she just handed me my results after a very brief appointment in which she poked my ankles a little (without taking off my shoes or socks) and noted that it put me in agony, she noted that I gained weight and swelling while off the diuretic and suggested I go back on one, to which my boyfriend replied "but won't she wind up on dialysis and die from that?" and she said "Well that is why I really don't want her on them.."
but she just said she did... but now she doesn't... but she does... but she won't give me a prescription, and so I remain on nothing.
She had her secretary give me the number for her colleague and I called to try to make an appointment and was told that I couldn't have an appointment til May. I explained that my doctor considered this urgent due to the extremity of the situation and I really couldn't wait that long and that I have records and such and was not even allowed to take the May appointment as a holding spot for just in case, I was told to have the records faxed. I called my nephrologists' office and told them what was going on, I was told that they would call over and get things straightened out and call me back, but of course, I did not get a call and now it is 9pm on a Friday and I will have to wait til Monday.
I showed up today and simply greeted the secretary politely and quietly and said that I wanted all of the records that I had brought in returned to me right then and there, and also the records of the tests he had done, since he had outright refused to tell me the results when they came in while I was in the office a week ago. (He actually claimed that they were not there, but I know that they were because my PCP said they were and teh secretary told me that those were what she brought in while I was in there.)
She said that she was told that all of the results were "normal" (mind you, I had to wait for these records to be faxed over because supposedly when they arrive (even though I had requested them the week before- copies for myself, that is) the doctor scans them into a computer and shreds the paper. Okay, except why didn't he just mail me the paper copy since I wanted them anyway?
Anyway, the results show a few flags for abnormality:
White Blood Count 11.1 Normal is 4.0-11.0 so that is not TOO bad and is certainly lower than I have been... but it is still flagged.
MPV is flagged because it is 12.2 and normal is 9.6-12.0, Carbon Dioxide is 32, normal is 20-31.
Total Bilirubin is 0.2 and normal is 0.3-1.2
Three things that stand out as BIG TIME NOT NORMAL are:
1~ Complement 3, Serum- 169- normal is 79-152
2~ My sedimentation rate is 47, and normal is 0-20.
3~ Anti Nuclear Antibody test was POSITIVE.
These are all a pretty big deal, from what I gather, and not only was I not contacted with the information, I was outright lied to in being told it was not there AND I was refused treatment due to a lack of paperwork that had nothing to do with the tests that (still) need to be done.
Now, moving on to the kidney doctor, I went on March 11th for an appointment, and the doctor said to come off of the Bumex. She said (in front of my mother) that if I was on diuretics that I "would wind up on dialysis and die" so I need to stop immediately. I'd already taken the Bumex for the day, so I stopped the next day. She also said that she wants me to see a colleague of hers at a major hospital and that it is urgent that I do so, but that I need to get some testing done, so she took blood and urine tests and said to come back in a week.
My WBC was 11.3- normal according to this one is 10.3- either way, still high.
Osmolality urine listed at 362 with normal being 500-800.
Now, she didn't mention anything about this to me, she just handed me my results after a very brief appointment in which she poked my ankles a little (without taking off my shoes or socks) and noted that it put me in agony, she noted that I gained weight and swelling while off the diuretic and suggested I go back on one, to which my boyfriend replied "but won't she wind up on dialysis and die from that?" and she said "Well that is why I really don't want her on them.."
but she just said she did... but now she doesn't... but she does... but she won't give me a prescription, and so I remain on nothing.
She had her secretary give me the number for her colleague and I called to try to make an appointment and was told that I couldn't have an appointment til May. I explained that my doctor considered this urgent due to the extremity of the situation and I really couldn't wait that long and that I have records and such and was not even allowed to take the May appointment as a holding spot for just in case, I was told to have the records faxed. I called my nephrologists' office and told them what was going on, I was told that they would call over and get things straightened out and call me back, but of course, I did not get a call and now it is 9pm on a Friday and I will have to wait til Monday.
Thursday, January 15, 2009
More...
So continuing on...
When this all began, I went to one ER and was told that it was in my head, given an ativan and sent on my way. Two days later, I was taken to a different ER, more blood was taken and oxygen was given but I was told that I was not going to die that very night, so I had to go.
I was seen at a hematologist's office, but was seen only by a nurse practitioner, never actually seen by the hematologist. Many blood tests were done.
Many outside tests were ordered:
Stress echo- I was told this was normal, even though I felt like I was going to die.
Abdominal CT- normal
Bilateral leg ultrasound- normal
Abdominal MRI- a hepatic adenoma was found- a (at that time) benign) tumor that was presumably caused by LoEstrin24. This was told to me on July 28th, 2008 and I was told to come off of the pill immediately and that the MRI would be repeated after a brief time off of the hormones. As of this date, I can't get anyone to order the repeat of the MRI.
Pelvic Ultrasound- normal
The nurse practitioner put me on Lisinopril.
I have seen my gyn and been cleared of anything on his end.
My first "new" Primary Care Physician told me that he would not be my doctor because I have too many previous diagnosis. This was before I even swelled up. I got a new PCP and he ran a bunch of blood tests and sent me to a kidney specialist.
I had a terrible cough that would not go away, and the PCP determined (after months of antibiotics) that it was the Lisinopril causing an upper respiratory infection. I was taken off of it and eventually, the cough got a bit better. I still have left-over effects from it.
The kidney specialist first said (without doing ANYTHING, I kid you not) that there is nothing wrong and sent me home. Then she called and said that there was protein in a previous urine (not done in her office, because again, she did NOTHING) so I needed to come back to do a 24 hour urine. I did that, and she decided that being on Lasix and Triemterene was dehydrating me, so I needed to come off of it. She also said that my potassium was low.
My PCP put me back on the Triemterene, but on a lower level- Maxzide, which I am on now. I was off and on the Lasix a couple of times too. Nothing has actually shown any results, diuretic-wise though.
I have gotten weaker and weaker and my mobility has gotten severey impaired. I still have no answers. I will write more later. I am too tired.
When this all began, I went to one ER and was told that it was in my head, given an ativan and sent on my way. Two days later, I was taken to a different ER, more blood was taken and oxygen was given but I was told that I was not going to die that very night, so I had to go.
I was seen at a hematologist's office, but was seen only by a nurse practitioner, never actually seen by the hematologist. Many blood tests were done.
Many outside tests were ordered:
Stress echo- I was told this was normal, even though I felt like I was going to die.
Abdominal CT- normal
Bilateral leg ultrasound- normal
Abdominal MRI- a hepatic adenoma was found- a (at that time) benign) tumor that was presumably caused by LoEstrin24. This was told to me on July 28th, 2008 and I was told to come off of the pill immediately and that the MRI would be repeated after a brief time off of the hormones. As of this date, I can't get anyone to order the repeat of the MRI.
Pelvic Ultrasound- normal
The nurse practitioner put me on Lisinopril.
I have seen my gyn and been cleared of anything on his end.
My first "new" Primary Care Physician told me that he would not be my doctor because I have too many previous diagnosis. This was before I even swelled up. I got a new PCP and he ran a bunch of blood tests and sent me to a kidney specialist.
I had a terrible cough that would not go away, and the PCP determined (after months of antibiotics) that it was the Lisinopril causing an upper respiratory infection. I was taken off of it and eventually, the cough got a bit better. I still have left-over effects from it.
The kidney specialist first said (without doing ANYTHING, I kid you not) that there is nothing wrong and sent me home. Then she called and said that there was protein in a previous urine (not done in her office, because again, she did NOTHING) so I needed to come back to do a 24 hour urine. I did that, and she decided that being on Lasix and Triemterene was dehydrating me, so I needed to come off of it. She also said that my potassium was low.
My PCP put me back on the Triemterene, but on a lower level- Maxzide, which I am on now. I was off and on the Lasix a couple of times too. Nothing has actually shown any results, diuretic-wise though.
I have gotten weaker and weaker and my mobility has gotten severey impaired. I still have no answers. I will write more later. I am too tired.
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