Not Over Till The Fat Lady Sings

The fatigue these last two weeks has been overwhelming. I guess I tried to do too much during Spring Break (March 25th to April 1st).

Monday, March 25th I took my daughter, grandson and his friend to the hotel for a night. We had planned to go into the city but all hotels that catered to kids were booked. We decided to go the new hotel in town since it has a swimming pool, water slide and VCR’s. I brought my Nintendo and games. The kids had a ball. Nana only had to drive 5 minutes to get to the hotel!  I tried to recuperate on Wednesday.

On Thursday morning I had to take my grandson to his Ukrainian Dance Performance. They were performing for a group of Retired Teachers. We had to be at the school by 9:00 AM. Since the kids were going to be in costume for the performance, we had arranged to have a photographer take their pictures. This meant rushing from the performance to the studio. I finally got home at 2:00 PM and then had to hurry and tidy up for company in the evening. We were having a family birthday party at our house.

Friday was spent vegetating in my chair. We were invited out for dinner on Saturday night and our grandson came over to spend the night. Sunday evening we took the kids out for dinner to celebrate our 35th wedding anniversary. Monday I was so utterly exhausted I did not know where to leave myself. Whatever is wrong with me is sure putting a damper on my life. I find that when I get overtired, my body reacts by going into over drive.  At times it feels like my whole body is vibrating.

Called No Name earlier this week and asked him to fax the missing summary letter from the doctor in the west. I got the fax this afternoon. Following is a brief outline of the contents of the letter:

I got a chuckle out of the first sentence of the letter. The doctor in the west wrote and I quote, “Thank you for the referral of this pleasant, 53 year-old, married woman.” I hooted when I read the word “pleasant.”

He notes that I am a woman with multiple medical problems which  developed with anxiety that turned out to be Graves Disease. I always shudder when I read stuff like that. Anxiety was only one of the many symptoms I suffered from when I had Graves Disease. Doctors however just love to highlight that word.

He states that I have a number of sporadic complaints, including feeling weak all over, feeling nauseous, and head feeling dizzy all the time. He states that I cannot sleep through the night because I am jolted awake and that I hurt all day and have hip bone pain. I found his choice of the word sporadic rather strange. These are not sporadic complaints!

He also states that I have had a water deprivation test done but makes no mention of the fact that it was cut short and all but the first blood draw were hemolyzed. He also does not mention that my vasopressin levels were checked with the first blood draw of the water deprivation test and that the vasopressin levels came back below normal.  He mentions that I do not have hirustism, striae or thinning skin.  He says that I have marked truncal obesity. 

He says that I will have a dexamethasone suppression test which will definitely tell him whether I truly have Cushing’s or not.
Oh yes and this letter, which I at first thought was written by the doctor in the west, was actually written by his resident. Like I said, I flew 1000 miles to be seen by a resident who is planning to go into psychiatry. To put it bluntly, I feel very ripped off . I went to see this doctor (endocrinologist) in the west with the hope of finding an answer to my medical problems. I had expected that he would at least try to sort out my symptoms. I would never have made the trip if I had known that he was only interested in Cushing’s and that  I would have an appointment with a resident.  When I was on the plane flying to the city in the west, I remember thinking that if I did not get some answers from the doctor in the west, I would fall to pieces. The human mind and body are amazingly resilient.  Here I am back home, no further ahead then I was when I was on that airplane, and I have not fallen to pieces.  In fact my resolve has gotten stronger.

I will have to consider this another unproductive chapter in my life. The trouble is there have been too many of these unproductive chapters. Quite frankly, the medical professionals that I have seen so far with the exception of Bighead and the cardiologist have no imaginations. They ask me what I think is wrong.  I, like an idiot, tell them I believe I have an endocrine problem.  Big mistake. They all know that I have Graves disease and have had RAI (radio active iodine), and they will move mountains to disprove that I have an endocrine problem. They are so busy disproving an endocrine problem that they forget to look for anything else that might be causing my health problems.

It is time for another break from doctors. During the last four years I have developed coping mechanisms and will survive.  Sad though, that I, at the age of 54, have to put all my time and energy into coping with debilitating symptoms. There are so many other things I would rather be doing.

I am back and ready to “rock and roll.”

It has been more than two weeks since I contributed to this blog.  On March 18th I somehow corrupted the web site software.  –

After numerous emails begging the Sitebuilder Technicians for help, I decided to take the bull by the horn and solve the problem myself. I finally fixed the problem yesterday after spending 6 hours working on the HTML code.

My last big beef was the fact that I had not heard back from the doctor in the city in the west. No copy of the letter he wrote to my referring doctor and no copy of the test results. I finally faxed the doctor in the west again on March 27th, telling him that this trip to see him had cost me a substantial amount of money, time and energy.  I also told him that I wanted the letter and test results ASAP.

Imagine my surprise when my fax machine finally produced some results last Thursday afternoon; 31 days after I saw this doctor. My gut feeling was right; two of the tests were within normal limits. The doctor wrote, “Widebertha had the intravenous dexamethasone tolerance test, which was successfully performed on February 26th. Her post test 9:00 AM cortisol was 14 which is well below the diagnostic cut off for Cushing’s disease. This effectively rules out the diagnosis.” The doctor in the west then went on to say, “As an aside, her baseline serum aldosterone at the time was well below the cut off level used to consider a diagnosis of aldosteronism therefore I believe that is also ruled out.” He also wrote, “As Widebertha has now had the gold standard test for demonstration of hypercortisolemia and has been found to be negative, I would not foresee any further investigations along this line.”

I find it rather amusing that the baseline serum aldosterone was just considered to be “an aside.” Oh well, I think I am just “an aside” to these doctors.

According to the nurse who was in charge of the dexamethasone test, she took a blood test to check my ACTH levels. This supposed ACTH test is not mentioned in the letter the doctor in the west wrote nor is it part of the test results.

Squirt called me late Thursday afternoon, March 28th. I had not heard from him since my appointment on January 23rd.  Squirt informed me that the cardiologist had sent him a letter stating that I needed to see an endocrinologist to be reevaluated for endocrine disease.  Sadly the cardiologist chose Supercilious, whom I had seen in June, 2001.  I told Squirt that I needed some time to think about this proposal.  I had my fill of Supercilious last year.

However, since the Cardiologist has recommended that I be investigated for a possible endocrine disease maybe Supercilious will get off his high horse long enough to properly exam me and to take heed of test results that are abnormal.  Last summer when some of my lab results came back below normal, Supercilious insisted that it was just a fluke.

Squirt went on to say that he thought it was now finally time for me to see the doctor in the city in the west. Duh!!!! He told me that there were tests that he, Squirt, had refused to do up until now. He informed me that he had changed his mind and thought maybe the doctor in the west could do them. I informed Squirt that I had already been to the city in the west.  The trauma that bit of news created was awful!  Poor man; took him a good minute to regain his speech!  I went on to tell Squirt that the doctor in the west had given me three tests namely ACTH, Renin and Dexamethasone; the results of the Renin and Dexamethasone ruled out Cushing’s and there was no mention of the ACTH result.

Another trauma occurred when I told Squirt that I did not have right side heart failure. He of course wanted to know who had told me this. I told him the cardiologist had been very clear in his assessment of my imaginary right side heart failure. I then asked Squirt why in the world he sent me to an idiot like Dingaling who could not tell the difference between a fat neck and a distended carotid artery.  My answer to that question was a series of hiccups and gulps for air.

Squirt mentioned the information that he had received from Bighead at the Sleep Clinic.  He told me that Bighead felt that my sleep apnea was so mild that a CPAP machine would probably not make a difference to my symptoms.  Squirt neglected to mention several important tests and investigations that Bighead had listed. I of course felt it was my duty to tell him about these tests and investigations. This lead to another hiccup and air gulping attack.  After Squirt settled down a bit, he conceded that the tests and investigations I had mentioned were listed in the report he had received from Bighead.  Squirt finally acknowledged that he would have to make a valiant attempt to make sure I had all the tests and investigations done that Bighead had listed. And pigs fly!

I then took a few more minutes of Squirt’s extremely precious time, note the sarcasm, and told him what the cardiologist had said about Graves and RAI.  I told Squirt that the cardiologist was the only doctor I had seen in the last four years who had the “you know whats” to tell me that Graves and RAI can sometimes, though rarely, cause irreversible damage in a patient. I went on to tell him that the cardiologist thought I might be that rare unfortunate person. If that was the case I would have to learn how to deal with the nightmare that the Blonde Bimbo foisted upon me. I then reminded Squirt that the three so-called brilliant and best endocrinologists I had seen in the city had vehemently denied any relationship between my symptoms and Graves/RAI. I also told Squirt that the cardiologist told me that some of my tests suggested that I might very well have a kidney disease. I also mentioned that the cardiologist had told me that low vasopressin levels were not a FLUKE but could be an indication of a kidney disease.

Squirt then started to belly ache about how I had never mentioned other diseases; I had only mentioned endocrine diseases. That is when I had a trauma! I told Squirt that I would have thought that at least one of the four endocrinologists I had seen would have had the brains to look for something else. I asked him, “Since when is it the patient’s responsibility to diagnosis herself and then come to see you and tell you what disease she has?” I think not! I told him that the four idiot endocrinologists and the one idiot doctor of internal medicine did not have the wherewithal to look at other possible reasons for my symptoms. They only looked at the reasons I suggested. I told Squirt to bloody well make up his mind since on one hand he wanted me to diagnosis myself and on the other hand he ridiculed the information I got off the internet.

At this point I decided that it was in my best interest to terminate the conversation. Squirt will be gone for two week beginning April 1st. He wants me to come and see him as soon as he gets back. I have two weeks to plan my next strategy.

I absolutely refuse to make Squirt feel better about his failure to listen to Bighead and the Cardiologist.  The way Squirt carried on was pathetic.  He tried to make me feel guilty for causing him some uncomfortable moments when he was responsible for his own ignorance and failure to do his job.

We drove into the city yesterday afternoon to see the cardiologist. My husband had told me that if I was to see a cardiologist to make sure I saw this one.  My husband had worked with this cardiologist and a dear friend was a long time patient.   Am I glad I did!  I finally saw a doctor who knows what he is talking about.  I left that appointment actually feeling like a human being!

He asked me numerous questions about my different treatments and doctors’ appointments. He told me that there are some people with Graves Disease who do not react well to RAI (Radio Active Iodine). Their TSH will be within normal limits but the symptoms they continue to endure can be awful.  One of these symptoms is excessive weight gain. Other symptoms are weak muscles, sudden and unexplained potassium crashes and excessive water retention which is hard to control.  The cardiologist told us that when he was a resident he saw patients who had bad outcomes after RAI.  They had no option but to learn to live with the awful symptoms that resulted after RAI.

He then did an examination with emphasis on my heart. I was right about my so called right side heart failure being the UTIMATE FAIRY TALE.  According to the cardiologist I DO NOT have right side heart failure. He told us that my heart sounded perfectly normal. He examined my carotid artery and told us that it too was normal in size and shape. Dingaling obviously could not tell the difference between a fat neck and a distended carotid artery!  No wonder when I asked Dingaling what he intended to do about my right side heart failure he had no answers; just shrugged his shoulders. I was referred to Dingaling by Squirt, who insisted that Dingaling was one of the best in his field!  I am getting the distinct feeling that Squirt is only familiar with medical oddballs.

The cardiologist went on to say that he wanted me investigated for kidney problems. The water retention, low potassium levels, low vasopressin levels, high protein levels and high creatinine levels could possibly be an indication of kidney disease. He told us that he would make arrangements for me to see someone who specialized in this field.

The cardiologist ordered an EKG which I had that afternoon. It came back normal. He also ordered an Echocardiogram.

After the visit to the cardiologist today, and the information I received, the letter from the endocrinologist in the west is no longer so important to me. I am no longer panicked because my gut feeling is that the letter will say, “Found nothing!”  The cardiologist told us that he would refer me to the specialists he thinks I should see and I trust this man.

What really ticks me is the Blonde Bimbo, Leprechaun and Supercilious all insisted that it was impossible for me to have long term symptoms as a result of Graves Disease or Radio Active Iodine. In fact, the Blonde Bimbo told me that all I would have to do was take a tiny little pill every day for the rest of my life and my health would return to normal!  And I have a bridge to sell you!!!!  I never believed them. Today I was proved right!  People can have horrendous symptoms as a result of RAI or Graves Disease! Having RAI done is no guarantee that a person will be symptom free. You no longer have the symptoms you had before the treatment for Graves disease; you just pick up a slough of other equally unbearable symptoms.    No one ever told me there would be a symptom trade-off.  In fact, two days before RAI, I made a special point of going to see Squirt. I had this awful feeling that submitting to RAI was the worst thing I could do. I discussed my non-options with Squirt and he insisted that RAI was the way to go. Big mistake!  I waited a whole year before I complained that I was getting worse not better. I will never forget the rage that the Blonde Bimbo displayed when I mentioned this fact to her. She emphatically denied that I could have any of the post Graves/RAI symptoms I described because of Graves Disease or RAI. Instead she blamed them on depression, fat and menopause! The Leprechaun agreed with her. Supercilious didn’t have clue.

My husband had a long chat with one of the retired doctors in our city.  He told this doctor about my problems with Graves Disease and Radio Active Iodine. This retired doctor told my husband that before RAI they would do surgery on a patient like me. They would take a portion of the thyroid but always leave enough so that the thyroid could still function. This way a person was not completely dependant on thyroid supplement like synthroid. I did have the wherewithal to ask the Blonde Bimbo for this option before I had RAI. In a voice dripping with sarcasm she told me that surgery was a stupid option and she would not even consider it.  My fate was sealed.

It has been a while since I have added material to this blog.  I have to admit that I have been very discouraged of late. I am very angry but also feel rather hopeless.  I know, I know, too many sentences that begin with I.  Send the grammer police to my house.

It has been more than two weeks since I had the tests done in the city in the west. I faxed a note to the endocrinologist’s office last Friday, March 8th requesting my test results. I received a call from his secretary on Monday, March 11th. His secretary told me that the endocrinologist had written a letter to my referring doctor. She asked me if I wanted a copy and of course my response was “Yes Please.” She promised to fax it that day. When I had not received the promised fax by Wednesday, March 13th, I faxed the office again. I received another phone call late yesterday informing me that the endocrinologist had mailed me a copy of the letter that afternoon. With our “speedy” mail service, I should receive it in about two weeks!

After yesterday’s phone conversation with his secretary, I am positive that the endocrinologist in the west did not find a thing. He performed three tests, namely the Dexamethasone Test, Renin and ACTH. When I told him about my so called heart problem, he was very frank and told me that he was only interested in Cushing’s and Hyperaldosteronism. He made it very clear that he was not in the least bit interested in testing for any other endocrine or autoimmune disease. If this endocrinologist had actually found something, he would have telephoned the referring doctor; not send a letter by “pony express”.

I felt that this endocrinologist was my last resort. Before I went to see him, I was under the impression that he was extremely thorough and did not leave a stone unturned.  The bitter disappointment I felt when he told me that he was only interested in Cushing’s and Hyperaldosteronism cannot be described.  I guess I would have to say that it felt like the bottom had dropped out of my world. It was at this point that I realized I had probably flown 1000 miles for nothing. It was also at this point that my gut feeling began to tell me that this appointment would turn out to be as useless as all the others.

I have an appointment with a cardiologist in the city this afternoon. It will be very interesting to hear what he will have to say about my right side heart failure. Quite frankly, I believe that diagnosis to be the ultimate fairy tale.  I believe that the doctor of internal medicine picked this out of the blue because he had been told by my family doctor to find something.  I believe that the doctor of internal medicine picked this, because he thought if he made the diagnosis severe enough, I would tuck my tail between my legs and run! Quite frankly, I think this is how they treat someone they think is making up symptoms. Tell them they have a potentially deadly disease and the person will run like hell and never bother a doctor again.

Before leaving the hospital yesterday, the nurse very kindly made arrangements for me to have my final blood test done at the hospital near the hotel.  She attached a note to my lab requisition that said, “Stop at the emergency desk in case you need a card.”

I arrived at the emergency desk this morning at 8:45 AM.  I showed the receptionist at the desk the lab requisition with the piece of paper attached and asked her where the lab was located. She looked at me like I was really silly and informed me that, “No you do not want the lab. You are to go to Cardiology.”  I told her that I had specific instructions to go to their lab this morning for a 9:00 AM blood draw. Again she said, “No, you are to go to cardiology.” We went back and forth like this a few more times before I finally took the lab requisition back and read the attached note to her.  Her only comment was, “Well!”  It was very obvious that she had only read one word on the note, namely card, which she mistook for being the abbreviation for Cardiology. She then asked me who the doctor was that had ordered the blood work. I told her his name and even spelled it for her. She entered a name into her computer and informed me that no such doctor existed in that hospital.  I told her that was odd because I had seen a doctor by that name yesterday and that he was an endocrinologist. She looked at me with an all knowing look on her face and informed me that they only had one doctor with that surname but a different first name, that he was Dr. So and So, and with added emphasis that he was in Cardiology. By then I could barely keep my laughter under control but managed to suppress it long enough to spell the endocrinologist’s last name for her again.  She entered the new spelling into her computer and finally acknowledged that they actually had a doctor by that name in their hospital. Shaking with laughter, I asked her if she could please finally tell me how to find the lab. This exchange between myself and the receptionist would have made a great Monty Python routine.

I had the blood draw done without further to do.  I went back to the hotel, packed and then left for the airport at 11:00 AM. My flight left at 1:10 PM and I arrived back home at 4:00 PM.  What a relief to be home again!

After returning to the hotel last night I started reading a great book called “The Constant Gardener” by John Le Carre’.

This morning I left the hotel at 8:30 AM and got a cab to the hospital at the other end of the city. I arrived shortly after 9:00 AM and found my way to the endocrinology lab. I had arrived too early so sat and read my book for a while. Around 9:30 AM the nurse started one of the IV’s for the Dexamethasone Test. At about 9:45 AM she started the second IV. One IV was for the Dexamethasone. The second IV was used to draw blood every hour.

Before the Dexamethasone Test began the nurse informed me that the endocrinologist had also ordered other blood work and that two of the blood tests had to be put on ice as soon as the blood was drawn. I asked her if these were the blood tests to check the ACTH and Renin levels and she told me they were. This made me feel much better about being there. These were two tests that I had hoped I would have.

The Dexamethasone Test began exactly at 10:00 AM with a blood draw. The nurse drew blood every hour until 4:00 PM. I was then told to report to the lab at the hospital near my hotel at 9:00 AM on Wednesday morning for the blood draw that would complete the Dexamethasone Test.

Exhausted, I took a cab back to my hotel arriving just after 5:00 PM. After a quick supper in the hotel restaurant the evening was spent reading until I fell asleep.

I will try not to dwell on what the outcome of these tests might be. On one hand I hope that all the results are normal but on the other hand I hope the results show a problem. I really don’t think any of the doctors I have seen realize how desperate I am to find out what is wrong with me. I have also realized that these same doctors do not have the capacity to look at a symptom list and figure out what could be causing the symptoms. I rarely let myself contemplate what my life will be like two months from now. If I do think about it I just become frustrated and angry. In 1999 I kept thinking that once my thyroid medication kicked in and did what it was suppose to do my life would get back to normal. In 2000 I kept thinking that it would be just a short time before one of the doctors I had seen would figure out what the problem was and go about solving it for me. During 2001 I was beginning to doubt the abilities of my doctors to ever come to a conclusion about a diagnosis. Here it is 2002 and I now know for certain that there are medical professionals out there who don’t have a clue!

Today was the big day! We left for the airport at 7:30 AM. My flight left at 10:05 AM arriving in the city in the west at 11:00 AM. (Time Zone change) I checked into my hotel; caught my breath; then headed out to my 2:00 PM appointment with the new endocrinologist.

Quite frankly I still do not have a firm opinion of what happened during this appointment.  Maybe I am so jaded at this point that I cannot tell the difference between a half assed hopeful appointment and a disaster.  Maybe I had my hopes too high! Mind you by now I should be smart enough not to allow my hopes to soar before meeting the strange beings in whose care I entrust my health, the completion of an appointment and the results.

After waiting a short time I was called into a consultation room by the new endocrinologist. As soon as I saw his side kick I began to wonder in what direction this appointment would head. The new endocrinologist (I still have not thought of an appropriate name) introduced himself and then introduced his side kick, who just like I thought, was a resident. I flew a thousand miles to be seen by yet another resident! Just remembering that and writing it down makes me mad all over again. You would think that traveling a 1000 miles should at least give you a complete once over by the actual endocrinologist. But no, that is why they have their residents.  I guess I am just a fat old guinea pig for the residents to practice on.

The resident asked numerous questions which I answered to the best of my ability. I had brought along my carefully prepared binder with all my relevant medical documentation inside. I showed the resident my before and after pictures and the look I got was one that suggested he was sarcastically thinking, “Sure lady, I believe you once looked like that.”  I was rather shook up when the resident informed me that he planned to be a psychiatrist. Made me wonder what I was doing there.  Made me wonder if this was actually an interview to get to the bottom of my endocrine problems or an interview to see how nuts I was.  I have learned that you must always be suspect of these medical professionals. Their minds work in very mysterious ways. The resident did an examination of sorts and then left the room to confer with the boss man.

After their conferral, they both came back into the consultation room. The endocrinologist was very vague. He told me he was only interested in Cushing’s and Hyperaldosteronism. The endocrinologist told me he had agreed to see me because of the symptom list I had sent him and because of the referral letter from No Name. Apparently No Name had written in the referral letter that he was concerned that I might have Cushing’s.

The endocrinologist then did a cursory examination. He told me that he had scheduled a Dexamethosone Test at 10:00 AM the next morning at a hospital clear across the city.  I asked the endocrinologist about some of my symptoms but did not get a clear answer. I also mentioned that the sleep doctor had suggested that I be tested for Hyperaldosteronism.  From the endocrinologist’s reply I concluded that he was not interested in testing for Hyperaldosteronism.  I asked him about Insulin Resistance and his reply was that he was sure that I had insulin resistance but that it was not important at this time. At this point the endocrinologist and his side kick ended the appointment and sent me on my way.

I went back to the hotel feeling like the biggest fool in the world.  Here I had spent all this money to go see someone supposedly famous and caring and I felt like it had been a totally useless exercise. This was the first time that I felt that the bottom had really dropped out of my world and I would never get a diagnosis. I felt like I had exercised the last of my options and it had been a complete waste of time.

Later that afternoon my cousin came to pick me up at the hotel. We went to one of the restaurants in the city that my family and I use to frequent when we lived there. We had a lovely visit and I was so grateful to her for distracting me for a couple of hours.

It is 9:09 in the evening and whatever I have not managed to accomplish today will have to wait until I get back home.  At 10:00 AM tomorrow morning I board my flight to the city in the west where at 2:00 PM I will meet with a new endocrinologist. Because my flight leaves at 10:00 AM, we have to be ready to leave the house at 7:30 AM. I am not a morning person so this will be a traumatic experience for both my husband and me.

My appointment is with a very highly recommended endocrinologist. His secretary told me to plan on staying for four days. I hope this means the endocrinologist plans on doing all the testing that is necessary.

I spent most of the afternoon putting together a binder with my pertinent medical records and test results. Hopefully this will be a help and not a hindrance.

This trip has to have a good outcome. I am counting on this endocrinologist to finally figure out what is wrong with me. It would be much too disappointing to come back home without a diagnosis. I need to get on the road to recovery.

I received the following emails from Dr. Ted Friedman:

“Hi everyone – I’m going to be on CBS news next Wednesday morning, February 27th at 7:45 AM on CBS Morning News. I think it will be on at that time in all time zones, but if there is a question in your time zone, it will be on 45 minutes after the show starts. They will be interviewing me, my patient and the surgeon at Cedars-Sinai about a pituitary disorder called Cushing’s disease. It’s a nice story about a patient who had many signs and symptoms of this disease, but all her laboratory tests were normal. Eventually, I did some new tests on her, which were positive. She went for surgery this weekend and hopefully is cured. This is my first time on national television. Hope everyone can watch.  Ted”

When I emailed him and asked him what tests were done on Camille K. he answered with the following, “her 17OHsteroids in the urine were high, then I did the dex-crh test which was also positive. Hope the doctor can do the tests on you to make the correct diagnosis.”

Dr. Friedman is a caring, compassionate doctor. Whenever I have felt that I have no where to turn, he has always given me the hope that I too will get a diagnosis.

Monday morning, February 18th, I got a call from a nurse at Dingaling’s clinic. She asked if my husband was in because he had apparently called the clinic on Friday, February 15th.   I told her that my husband had called Dingaling’s clinic on January 17th.   He had left a message for Dingaling to call him back ASAP; that it was now February 18th and my husband was still waiting for Dingaling’s call.   I told her that I had called Dingaling’s clinic on Friday to find out about my test results.   She informed me that I needed to come in for a follow up appointment with Dingaling.  I asked her why in the world I would need a follow-up.  She told me that when they got my files back from Medical Records and had actually read the notes that Dingaling had made on January 14th, they had discovered that I was suppose to have had a follow up appointment.  My reply to her was, “Damm good thing that I called you on Friday!”  This type of incompetence seems to be standard practice these days.  Everywhere I turn there is more and more of it.  She told me that I should come in to see Dingaling on Wednesday, February 20th.

Wednesday my husband and I kept the appointment with Dingaling.  To tell you the truth I really have no idea what the purpose of this appointment was.  Dingaling asked me if I had been at the sleep clinic.  I told him that I had been there from February 4th to February 6th.  Dingaling then informed us that he had not received any information from Squirt or the sleep clinic.  I told Dingaling that Squirt had been faxed a 5 page report on February 6th.  Dingaling wanted to know how I knew that.  I told him that I had been faxed the same information on February 12th and that I had been told that Squirt was faxed on February 6th.  Dingaling then asked me if I had brought the report with me.  I told him that I had no idea that it was my responsibility to provide him with medical reports thus my copies had remained at home.

I told Dingaling that the sleep doctor had suggested a trial on the CPAP machine but that he was doubtful that it would help my problems.  I would not have access to a CPAP machine until July 10th, 2002.

Dingaling told me that all my breathing tests and lung capacity tests were above normal for a person my age.  I asked him if I really actually had right side heart failure.  He did not answer that question.  Dingaling went on to say that my right sided heart failure must be caused by significant sleep apnea.  I told him for the second time during that short visit that the sleep doctor’s report stated that I had very mild sleep apnea and that in his opinion it was not the cause of my right sided heart failure.  Dingaling of course completely ignored what I said.  It always amazes me how these doctors have fine tuned their selective hearing ability.

Dingaling went on to tell me that he would wait until after my trial of CPAP in July before he made any decisions on what to do about my right sided heart failure.

I told Dingaling that this was not acceptable and that if I really had right sided heart failure I did not intend to wait 5 more months before anything was done about it.   I then informed him that I was going to see someone in the west on February 25th.  He arrogantly wished me “good luck.”  This was a bad move on his part.  My husband had been sitting quietly listening to this rubbish until Dingaling wished me good luck.  My husband rose out of his chair, mad as a hornet, and informed Dingaling that we did not need luck but what we needed was just one doctor who knew what he was doing.  Needless to say we left right after that.

Right after my appointment with Dingaling, I went directly to the Medical Records department and asked them to make copies of my records from January 14th through to February 20th.   These records would include my first appointment with Dingaling, all my test results and my appointment on February 20th.   I was told they would be ready today and my sister picked them up.

Late this afternoon I received a phone call from Squirt’s secretary.  Finally 17 days after he got the report from the sleep doctor he decided that I needed to see him.  I guess this is what he considers ASAP to mean.  His secretary informed me that Squirt wanted to see me next week.  I told her that would be impossible.  She asked why.  I told her that I was going to see the endocrinologist in the city in the west.  She went dead silent for a moment and then said, “You are going to the city in the west?”  I said, “You bet I am and I am staying for most of the week.”  She then said, “I will have to tell Squirt about this.”  Obviously Squirt had not gotten around to writing that referral letter to the endocrinologist in the city in the west; the referral letter that I asked him to write on January 23rd.  I did not bother to tell his secretary that I had gotten someone else to write it.  Let Squirt wonder how in the world I got my appointment confirmed without his letter.

Today was my appointment with the ophthalmologist.  My husband had business in the city so I did not have to drive in alone.  What a relief that was!  The way I have been feeling this week I would rather not get behind the wheel of a car and drive for an hour.

I had asked Squirt to make an appointment for me with an ophthalmologist.  I had some concerns about my vision.  I told Squirt that I wanted an appointment with a different opthamologist than I had seen the first time.  The first ophthalmologist I saw was on the ark with Noah.   The ophthalmologist I saw today was not on the ark with Noah but he certainly was around by the time the water receded!

I had all the standard tests done; at least I think I did.  This friendly old chap kept telling me that everything was just fine.  He told me that I needed to wear my glasses at all times.  I asked him about my peripheral vision which he checked today.  He told me that it was just fine.  I told him that I saw shadows and movements in my peripheral vision and that at times it was actually rather frightening.  I told him that I could be quietly sitting and watching TV when I would suddenly see out of the corner of my eye a shadow or movement, as if someone was coming into the room.  When I turned around there was nothing there.  He told me that this was a result of the fluid in my eyes moving up and down and sideways.  And of course, it had to do with my age!  I guess all 53 year old women see shadows and shapes that nearly scare them to death.   Maybe these “visions” are one of the more exciting things left for us to experience in our old age.

I mentioned that I had had Graves Disease and that I had had eye changes a year after RAI.  He did not think it was necessary to measure my eyes.  He assured me again that everything was just fine and not to worry.   At least it was not a long appointment lasting all of 25 minutes.

My husband and I had a lovely lunch in the city and then headed for home.  This fatigue is really becoming worrisome.  I feel like I have been through the wringer.

When I got home,  I decided to take the bull by the horns and call the clinic at the city hospital where I had all the breathing tests, EKG, PV lung scan and blood work done the week of January 14th, 2002.  I wanted to know what my test results were so that I could take copies along with me to the city in the west.  My call was answered by the secretary at the clinic.  I told her that I was calling to get the results of all my tests.  Of course they were not available.  I was told that she would have to get my file from Medical Records and give me a call back.  Heaven only knows when that will happen.

Tomorrow is a big day for my family.  My 7 year old grandson’s hockey tournament starts at noon and runs until Sunday afternoon.  This Nana plans on attending every one of his games even if she has to be carried in.  Now wouldn’t that be a sight for sore eyes!