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Lee B's Story

My name is Lee Udall Bennion, and I am 49 years old, living in rural Utah. I am married and have three daughters aged 28, 26 and 18. I am a painter and my husband is a potter. We are self-employed and we carry health insurance through an HMO, Intermountain Health care or IHC. It is our biggest monthly expense (this year $600. per month), but is the most reasonable health insurance we could find.

I am14 months post op from pituitary surgery for Cushing’s disease (Dec. 20, 2004). I think that my story is probably fairly typical for Cushing’s (if that is possible) and I would like to share it so that it might help and comfort anyone who is going through it.

Looking back at family photos I can see that I had a Cushinoid face (moonfaced) since about 2002. (I am posting photos of myself over the last few years on the Cushing’s photo gallery) Some of the other early symptoms were gradual but steady weight gain, hair loss on head (I used to have a braid that I could it on), hirstruisum (increased facial hair), ruddy complexion, my toes becoming numb, and wounds not healing as fast as they should. I just figured this was all due to getting older and tried to accept it gracefully.

Gradually other symptoms appeared such as frequent insomnia, fat increased on neck, clavicle area, all my teeth becoming hot and cold sensitive at once. ( My dentist later told me that I had a major gum recession that was most likely triggered by the Cushing’s and was the cause of the sensitivity.) I also was having trouble with bladder leakage and was urinating way more often than normal. It was like being pregnant again. I used the toilet just about every time I walked by it. My usually like clockwork periods were not normal or regular. I was finding it difficult to concentrate on work (painting). I didn’t enjoy working in my studio. I realized that I had gone from being an avid bookworm to not reading much at all. I didn’t read anything unless I had too. Writing or using the computer much was also a burden. My eyes were achy and light sensitive. Even all this I just figured was just bad luck in the way I was aging.

It wasn’t until my skin thinned so much that it tore and bruised without me knowing why, my insomnia became constant and intolerable, my already sensitive eyes had frequent ruptured blood vessels in the whites of the eye, and I developed a constant dry throat that I figured that this was something other than pre-menopause.

In February of 2004, I went to see a family practice Dr. in our area. The Dr. I had had my babies with years ago had retired from regular practice and since I hardly ever go to the Dr. I didn’t have an established relationship with a Dr. who had known me for years. I realize in hindsight that this is probably an important thing in diagnosing Cushing’s; that the Dr. knows you and what you look like before you are sick. If that is not the case, take a photo of yourself before you were sick to show the Dr. what is normal for you. Of course I didn’t do this at first. I think I weighed about 170 then. I am 5’10” and my normal weight most of my adult life had been between 150-155, but as I mentioned before, it had been steadily creeping up over the last several years, no matter how hard I tried to shake it. I just figured I was getting a “matronly figure”. The first Dr. I saw was concerned about my complaints and ordered a test on my thyroid, which she said was enlarged, and the regular other blood work and advised me to see an eye Dr. about my eyes. The blood tests came back normal, but even before they came back I heard that she had suddenly left town for personal reasons, so I had no Dr. to discuss what to do next with.

I went to the local optometrist as I had heard good things about him. He said that I had bletheritus and dry eye and that was what was causing me to have puffy uncomfortable eyes. I mentioned to him that I also had a dry throat all the time and he also noticed all the little bruises on my hands. He suggested that I might have something called Shogren’s syndrome, a disease that is an autoimmune disorder where your salivary and tear glands are gradually destroyed. He showed me pictures of a woman’s hands that had it and they were bruised like mine.

My brother is an MD (GP) and lives an hour or so away from me. Since there are no specialists down where I live, I called him and asked him about Shogren’s. He had never heard of it, but looked it up and said that I needed to see a rheumatologist for that and gave me a referral. It took until the end of March 2004 to get an appointment with that Dr. He examined me and ordered 11 blood tests. The tests all came back negative for Shorgren’s. I was relieved, because that nasty disease there is no cure for. You just have to treat the symptoms for the rest of your life. But on the other hand I was frustrated that the Dr. said that there was nothing wrong and that there was nothing he could do for me. When I asked the receptionist who called with the news if he could help me figure out where or what to do next she said no, he couldn’t help me and therefore would not see me again.

In April I decided to try another local new woman Dr. in the area where I lived. I told her about all I had been through, what my symptoms were and that I was sure there was something wrong with me. She smiled and looked me over and ordered the same blood tests I had done in February to see if there were any changes. We also did a PAP smear. I never heard back from her either, so after a few weeks I called the office and was told that the tests were all normal. I asked if the Dr. would please call me when she had a moment, and she did return my call. I asked her what should we do now? She replied that this was probably all due to menopause (by now my periods had stopped) and that I should just work on loosing weight and getting more exercise. I felt frustrated, stupid and sick. I decided I wouldn’t go to any Drs. for a while. I was too busy. I had an exhibition of paintings that I need to finish and frame (show opened in early June), a house that needed to be whipped into shape for a historic home tour in late May, plus two backpacking trips to co-guide down the Paria river for Grand Canyon Field Institute in early and mid-May.

During this time I felt like my symptoms were accelerating. I felt hot or like I was having a hot flash almost all the time. I was always flushed in appearance. I didn’t handle stress well and was very prone to tears. I loved the two backpacking trips. I was in good shape from walking and riding horses. I was always in super drive, lots of energy, but a false high, because I was so sleep deprived. Even on the backpacking trip after carrying a 50 pound pack all day I could only sleep for about 4 hours a night. I had a constant slow nose bleed on the second trip and had bruises all over my forearms from the pack straps rubbing as I put on or took off the pack.

Some friends who hadn’t seen me for about 9 months came by in late May and after I left to room asked my husband what was wrong with me, as I looked so terrible! He told them of my frustrating experiences with Drs. This friend has connections in the medical world in our state and told me that I needed to see a Dr. who cared and said that he could get me into see someone in an internist group in Sandy, UT without having to wait too long. Would I like him to make a call and set it up? I accepted his offer and soon had an appointment for June 10, 2004 with an internist named Dr.A.

Shortly after this visit I saw my sister. She was down to visit our Mom in Provo, UT from WY, where she lives. She is a nurse and had expressed her concerns about my health for a while. When she saw me in the end of May she said it all came together for her and she remembered her first nursing experience as a student. She was caring for a woman who was dying of something called Cushing’s disease. She said that her case had gone un-diagnosed so long that her symptoms were irreversible and she was dying. She remembered the symptoms though, and I visibly had all of them. She told me to ask Dr. A about Cushing’s as a possibility when I saw him. In the mean time she called our Dr. brother, and told him what she thought and he got involved and ordered a 24 hr. urine test for cortisol levels so I would have the results back before I went to see Dr. A.

My 24-hour urine test showed a cortisol level of 585 and ACTH levels were also elevated. My brother then ordered a CT scan of the abdomen, which showed enlarged adrenals but no tumor there. So when I saw Dr. A, I gave him these test results, plus took him a photo of what I used to look like. He examined me and concurred with my siblings, I had Cushing’s disease.

One thing that Dr. A discovered was that I had a urinary tract infection (UTI). The nurse called me a day after my office visit and was surprised that I didn’t know, but I told her I felt so lousy all the time, I really hadn’t noticed the UTI. I started some antibiotics for that. Every time I saw Dr. A I tested positive for UTI and I was on antibiotics for most of the rest of the year for it. He also pointed out that my blood pressure was high, something I was unaware of, but is typical in Cushing’s. I have always had abnormally low blood pressure all my life.

Dr. A also gave me some medications for sleep. First I tried Ambien, 10 mg. It didn’t work so he said to try 20 mg. This would get me to sleep, but it would only let me sleep for about an hour or two and then I was wide-awake again. Next we tried Restoril, I think 10 or 15 mg. That worked a little better. I think that sometime in August he suggested I start Lexapro, 10mg to help with my anxiety. This combined with the sleeping pills made it possible for me to get some sleep, say 4 to 5 hours a night.

In between this time of my initial diagnosis and the end of 2004 I saw a few other Drs. For various reasons. I had a terrible ingrown toenail on my L big toe. That nail had been torn off in a rough run of rapid on the first day of a Grand Canyon river trip in the summer of 2002. It had grown back but was not attached from about midway up the toenail bed. Lately it had arched up and gotten very thick and difficult to trim. So I went to see a podiatrist in July of 2004 who removed the ingrown nail and told me the nail had a fungal infection. He suggested some medication that would knock it out, but after I heard how hard on your liver that drug could be, I decided not to take it as I felt my body was under enough stress as it was. I used instead a salve that I make for healing hands and feet cracks. Several people who buy it from me had told me that it had cured nail fungus for them, so I decided to try it on myself, and over the course of a year, I grew a new and normal nail.

As I have mentioned, my eyes were one of my biggest complaints with the Cushing’s, and that is not typical. I already have a significant blind spot in the middle of my L eye due to a pit on my optic nerve. I felt like the vision in that eye was getting worse and so I asked Dr. A to refer me to an ophthalmologist in Oct. 2004 to see if there was something going on with my vision besides the Cushing’s.

The first Dr. I saw told me that my vision had gone from 20/20 (April 04 when I saw the optometrist) in my left eye to 20/? I don’t remember, but he was alarmed and said it wasn’t a normal change for so short a time. He said that the optic nerve in my L eye didn’t look healthy to him and referred to a retinologist who I saw the next week. He was also alarmed at the nerve’s appearance in that eye and said that I should see a neuro-opthamologist, which I did the week after that. So far they all said that Cushing’s shouldn’t be causing this, so I was pretty worried by the time I saw the third Dr.

I was at that clinic for half the day and had lots of tests and a long exam, but her conclusion was that the nerve pallor and condition was due to the Cushing’s and that I should just hang tight and see if things don’t improve next year, when my cortisol levels start to drop. That was a huge relief! She was right, my vision began to improve and my eyes not hurt as I came down off the cortisol in 2005.

Back to the hunt for the tumor, my brother next ordered an MRI on my brain, which showed no tumor on the pituitary. A chest x-ray showed there was not a tumor in the lungs. My brother also referred me to a neurosurgeon in Provo, UT. Of course this all took days/weeks. I think the first MRI was on June 16. I met with the neurosurgeon soon after. Since the MRI didn’t show anything and neither did the lung or adrenal scans, the neurosurgeon ordered jugular blood samples with CRH. I had this done sometime in early July. He also ordered another MRI. The surgeon was gone on vacation for two weeks and during this lag time, I finally got tired of waiting for more information about my condition and went to the internet to see what I could find out about Cushing’s disease and its treatment. This is when I found CUSH and other very helpful websites. Many thanks to all of you!

By the time the surgeon was back and I saw him in the third week of July, I had learned a lot. I had learned what the symptoms were and what the diagnostic tests for Cushing’s were. Most important, I learned about the treatment for Cushing’s. I learned that the most current surgical approach to the pituitary gland was through the nose instead of under the lip. This was much less invasive and the recovery from the surgery was much faster. For instance, in the older method you are not supposed to brush your teeth for a month post op. There was also a risk of loosing the feeling in your upper lip. The other important thing I learned that was the current thinking was that you didn’t take out the entire pituitary gland unless it was completely involved with the tumor, but usually in micro adenomas like mine, the surgeon can remove just the tumor or just the half of the pituitary that the tumor is on. Usually half a pituitary is sufficient to get by with.

I also learned what questions to ask surgeons such as: “What approach to the pituitary do you use?” “How often do you do pituitary surgery?” (Min. of 15 x a year is an OK answer, but more is better) “What is your plan if you do my surgery?”

When the neurosurgeon got back and I finally got an appointment with him he was pleased to tell me that the blood tests strongly indicated that the tumor was on the left side of the pituitary and thus we could proceed with scheduling surgery. I asked him the above questions and unfortunately, I was not pleased with his responses. He indicated that he did the approach to the pituitary under the lip, not through the nose. He also said that although he did pituitary surgery fairly often (I am not sure what that meant) he didn’t see too many micro-adenomas. I asked him what his game plan for my surgery was and he indicated that he would remove my entire pituitary gland. I was shocked by this and asked him why he wouldn’t just remove the tumor or part of the gland and he indicated that the “success” of the surgery would be almost guaranteed by removing the gland. A success for him, but not for me, who would be stuck w/ complete hormone replacement for the rest of my life! I thanked him for his advice and asked for my films back, and told his PA that I would probably get a second opinion before scheduleing surgery.

When my brother heard about this he was talking to my husband on the phone. He told Joe that I should just go with the first neurosurgeon. It may not be the latest surgery, but it was fine and what had been done for years and what was available here. He suggested that I was becoming a “difficult patient”. I am not sure exactly what that meant, but I presume it is one who asks too many questions. I am not a contentious person by nature and will avoid conflict at just about any cost. I wasn’t disrespectful or rude to the neurosurgeon when we talked, I just asked him questions. I felt crushed by my brother’s comment, although I know he meant no harm. I think he was just concerned that I get treatment as soon as possible, and in his eyes, I was walking away from what he had set up for me. At this point he suggested that I see an endocrinologist, a specialist who typically deals with Cushing’s cases. He set me up with one in SLC and I had a meeting with him around the end of July. He concurred with Dr. A and my siblings that I had Cushing’s. He suggested I see a neurosurgeon at LDS hospital named Dr.B. I called his office and was able to get an appointment for August 15.

Dr. B didn’t think I looked Cushinoid, but considering the lab work, he guessed that I did have Cushing’s. He said that most Cushing’s patients he had seen looked like someone put an air hose on their big toe and blew them up really huge like a blimp. I guess he was trying to pay me a compliment because I wasn’t so obese, but I felt kind of sad. I have heard Cushing’s called “the ugly disease” and I think that is a pretty good name for it. You feel ugly on the inside and outside of your body. I told him that if he had seen me before I was sick, he would know I had Cushing’s.

He did the nasal approach to the pituitary, and said that he did about 30 pituitary surgeries a year, good. He said that he would not remove the entire gland, but only what he had to get the tumor, good. Then he went on and on about how much more difficult micro-adenomas were than bigger tumors, and that he much preferred working on bigger tumors, which wasn’t very comforting.

He said that the jugular blood-sampling test the first surgeon had ordered was not good enough. He felt like there was a chance it wouldn’t be accurate by the nature of the test, as the samples were drawn from the jugular, not up near the sinus like the IIPSS (inferior petrosal sinus sampling). Also, there was some confusion about the labeling of the tubes of blood from that other test. They were all marked L at first and some later changed to R, so there was no way he would accept those results. I had to have IPSS done if I was going to have surgery with him, since the tumor didn’t show up on either of my MRIs.

I had read about this test and knew that it is kind of tricky or prone to problems. Sometimes the patients are under anesthesia, sometimes not. Dr. B referred me to an invasive radiologist, Dr. C at LDS hospital for this test. It was done at LDS hospital in SLC on August 25, 2004. I really liked Dr. C. He talked to me for about ten minutes before we went into the surgical room for the procedure. He wanted to know if I knew what he was going to do and why. He said that he had done about 10 of these tests in the decade that he had been practicing, but hadn’t had any problems with it yet.

I was conscious through this procedure. Since none of the surgical crew he was being assisted by had ever seen this test done before, he carefully explained to them what he was going to do and what he needed them to do. I asked him to show me his tools, which he did. It was very interesting. He went in my right femoral artery with both catheters. He adjusted the screen so I could see where he was until we got to the cranium. I then could not tilt my head to look at the screen, but had to lie flat. At this point he tensed a little and said that I was going to hear some popping, crackling noises and that it would hurt and that I needed to hold very still. As if I had been moving before! I heard the noises and it did hurt, like a sudden and intense headache, but nothing I couldn’t deal with. He kept saying over and over “Don’t move!” “Don’t move!” “Don’t breath!!!” I wasn’t moving or breathing but I sensed this was his way of expressing his anxiety. He got the catheters in place on both sides in about 20 min. and then they gave me the CRH (cortisol release hormone) and began collecting samples. Taking the catheters out was quick and easy.

The thing that impressed me the most about Dr. C was how kind and respectful he was not only to me the patient, but also to those who were assisting him. Through out the entire procedure whenever he asked anyone for anything he always said please and thank-you. He didn’t talk sharply or down to them even when they asked him to repeat himself because they didn’t understand something. I was very frightened about the procedure, but felt reassured by his kind manner and soon completely trusted him, even when he kept telling me not to move, and I knew he was a little uptight.

There were two snags with the IPSS. One was that in recovery I kept feeling a sharp cramp where the catheters had gone in. It hurt so bad that I mentioned it to the nurse and the Dr. came and looked me over, but thought it was OK. I didn’t know why it hurt, but when they got me up an hour later to take a walk around the ward to see if I was ready to leave, I started to bleed from the site, so they gave me another hour to sleep and then we tried it again. This time I passed. What my Drs. and I didn’t know then was that I have a blood clotting disorder called VonWillibrand’s. It’s basically a mild form of hemophilia. I should have had a medication that would have helped my blood clot before the procedure. As it was I got a huge bruise around the entry site. It was about 10” around and I was so tender for a few weeks.

The other snag was after the hit of CRH I guess I really churned out an extra shipload of ACTH, and for the next several days I felt like I was going crazy. I already had insomnia, anxiety and was feeling pretty weird with my high cortisol levels, but after this test it was absolute hell for a few days. I didn’t feel like I even knew who I was. I just cried all the time. I didn’t realize that the CRH was probably why until it was all over. It would have helped to know that I might feel even crazier than usual after the test.

I waited to hear what the test results were, but never did hear back from the endocrinologist in SLC I had seen. My brother works in the same HMO as all my Drs. so he got online and was able to tell me the results. I decided to try and find another endocrinologist that seemed more interested in my case.

In my reading on the Internet I found a site that listed Drs. around the country that have expertise in treating Cushing’s. In my state, UT, only one endocrinologist was on this list and that Dr. D at McKay Dee hospital in Ogden, about three hours from my home. I called his office and was told that I would have to wait until Nov.29th for an appointment. It was early Sept. I started to cry on the phone and told the woman that I was very sick with Cushing’s disease and couldn’t wait until then. She was firm. She said that perhaps if my Dr. called her Dr. that might expedite the matter. So I called Dr. A and asked him to call Dr. D, which he did. The next morning I got a call from Dr. D’s office asking if I could be up to their office by 8:15 the next morning! This was Sept 14, 2004.

I don’t know why I was so intent on a new endocrinologist. I already knew I had Cushing’s and was on line w/ a decent surgeon. Looking back, I think there were two reasons. First, I knew I was going to have follow up care for about a year after the surgery with an endocrinologist, and I wanted to find a Dr. who would call me when tests were done and seemed to care just a little bit about me. Secondly, I wasn’t altogether comfortable about Dr. B. My friend who has the connections in the medical world here in UT had done some background checking and said his contacts had told him that DR. B was known as a very good surgeon with not so good post op care. Although he was decent to me when we visited his office, I sensed he was arrogant. I saw him yell at one of the office help over not scheduling the right test for me. I guess that was supposed to impress me that he was getting after this guy, but I felt very uncomfortable about it. I was hoping that Dr. D might go along with my idea to try and go out of network to one of the several hospitals around the country that do a lot of work with Cushing’s and have the best neurosurgeons for it. I actually would have preferred to go to the U of U, also in SLC to a neurosurgeon named Dr. E. He spoke to me on the phone after I sent him an email about my case and told me that he does about 100 pituitary surgeries a year using the nasal approach. He is very familiar with working on micro adenomas. But he was out of my HMO network and I would need someone like D to go to bat for me to go out of network. The other hope was that perhaps there were other neurosurgeons there at McKay Dee hospital in Ogden (anyone there would be in my network of providers) that did lots of pituitary surgery and the nasal approach.

Dr. D was very kind and through in his examination of me, more so than any other Dr. thus far. Perhaps that has something to do with the fact that he is a teacher. He almost always has a young resident Dr. there with him and takes the opportunity to educate them about Cushing’s when I come in.

He suggested that I have one more MRI up there at McKay Dee. This was slightly different, a dynamic MRI. I am not sure of the difference, as the way the test is done is exactly the same as the other MRI’s I had done. He also spoke highly of the radiologist, who would do and read the scan, a Dr. F, whom he thought was brilliant.

This test couldn’t be scheduled until Oct. 13. It turns out that I was going to be up in Ogden that day and for the next three to groom for a friend at a horse show. My husband called me the day after the dynamic MRI was done to say that Dr. D’s office had just called and that Dr. F had found the tumor! I called right over to Dr.D’s office to see if he had a neurosurgeon up there I could meet with while I was in Ogden. He got me an appointment with the one he likes to work with and I did meet with him the next day, but he did far less pituitary surgeries a year than Dr. B, and he also only did the under the lip approach.

At this point I became kind of paralyzed. I just didn’t know what to do. Dr. D had told me that my case was straight forward enough that he didn’t think I needed to go out of network for my surgery, that there were competent surgeons in network that could do it, and he was right. I would waste too much time and energy trying to fight with the HMO and he knew I wouldn’t win. I was so confused by then, and not exactly rational.

During that week my husband’s cousin had given me the name and phone number of a woman she knew in SLC who had Cushing’s and thought perhaps she could help me. I called her one night, shortly before I went up to Ogden for the dynamic MRI. She was very kind, but her story horrified me. She had seven pituitary surgeries in the last several years. Her life/health were a mess. I can’t remember all the details, but she was very adamant about me seeing her endocrinologist. She also told me under no conditions to have surgery with anyone here in Utah. I just had to fight my HMO and go out of network if I wanted my life to be spared what she had been through. She offered to go to Dr. appointments with me, help fight my battle etc…. I spoke to her twice, but then just couldn’t do it again. I felt so confused and terrified when I talked to her. I know she meant to help, but it didn’t. This added greatly to my feeling of stress and paralysis.

My husband and I and our dear friend Christa had planned a river trip that was just around the corner. I put everything medical on hold and went out for a week and it was great. We had two boats and just we three, all very experienced campers and boatmen. Christa and Joe took care of me. I did some hiking, but one day I stayed in the tent and slept while they hiked all day. I slept so well on that trip. What I mean by this is that the sleeping pills were actually able to buy me some good sleep out there. At home I was only getting about 3 to 4 hours a night even with pills. I didn’t think about Drs. or surgery or any of that stuff for a week. We went from The Gates of Lodore (on the Green river) down to Dinosaur Natl. Monument in about 5 days. We saw no one else as far a people, but lots of elk, big horned sheep, deer, some rain and snow. It was so beautiful and just what I needed.

We got home Nov. 2. The next evening around 9 PM I got a phone call from Dr. D. I was so surprised. He said he was still at the office going over files and mine was one of them. He wanted to make sure I was going to schedule surgery soon. I started to cry and talk like an idiot. He was very patient with me and stayed on the phone until I had committed to call Dr. B the next day. He was concerned that I was waiting too long. He told me of another patient he had that wanted to wait for her surgery until her husband’s insurance from a new job would cover it. She died of a septic infection (the immune system is severely compromised w/ Cushing’s) a few weeks before she was eligible for the insurance to kick in. Hearing that story helped me get over being stuck. I was also touched that he cared enough to call and check on me.

Looking back I can see that I was very afraid of the surgery and the aftermath. I knew about Cushing’s now and what it was like to be ill. I didn’t like it, but it was a known. What if my surgery didn’t go well? What if it did? There was the steroid withdrawal to go through, which I knew was going to be rough. I was scared to do anything, and like I said before, I was NOT thinking clearly. All that cortisol affects your brain as well as the rest of the body. In hindsight I can’t believe I was so stuck, but I was.

I did call Dr. B’s office the next day. I was hoping I could just schedule the surgery since I had already seen him once, but I was told I needed to come in and see him again first. I also had the new dynamic MRI films for him to see. The soonest they could get me in was the 11th of Nov. I told him I had looked around, but decided he was the best neurosurgeon in the network, which was true. He seemed flattered-good. While discussing the surgery I showed him the bruises on my arm and showed him some small cuts that had bled for hours. I also had been having bloody noses that would last all day. I knew that bruising was a common Cushing’s symptom, but I also had a problem with clotting it seemed. Was he worried about this I asked and he said “Yes”. He wanted me to have some blood tests done before he would do the surgery. The head is a very vascular area and he didn’t need a lot of extra bleeding going on while trying to work in such a tiny area, doing such delicate surgery.

To make a long story short, it was discover that I have VonWillibrand’s syndrome mentioned before, and the hematologist that evaluated my case said that I would need a human blood protein factor 30 minutes before the surgery and every day for a week after the surgery to make sure I clotted OK. Dr. B put me on his surgery schedule for Dec. 5, 2004. Two days before the surgery his office called and told me that there were two other surgeries that had to be done that day. They were both more serious than mine, requiring full on cranial surgery that would take many hours each. I could still have my surgery that day after he had done those two, but the office help suggested that I re-schedule for the 15th of Dec., which I did. A few days before that date I got another call from B’s office, telling me that I had been bumped again, until Dec. 20th. I was beginning to panic thinking that I wouldn’t get my surgery before the end of the year and I would have to start my deductible again! Its terrible to have to worry about money when you are sick, but unfortunately it is reality. Everything is so expensive in the medical world. Just the IPSS test was over $7,000! Every time the phone rang the day or two before the 20th, I was sure it was a call to tell me that my surgery was cancelled.

But my date held that time and surgery went well. I went into surgery a little after 2 pm and was in recovery around 5 pm. The first 24 hours were rough. I remember extreme pain as I began to wake up, the kind where you can’t stop groaning and kicking a foot. I was given something and it abated, but I was groggy. I remember them bringing in my husband, brother and a daughter to see me. I must have looked terrible, as all I remember was the horrified looks on their faces. I couldn’t say much.

I next remember telling the nurses I needed to urinate. Dr. B didn’t want a catheter in me because of the chronic UTI I had been having, so they helped me off the bed and onto a toilet. As soon as I was there I began to have the feeling that I would pass out. I had tunnel vision, and ringing in my ears. I told them I was going to pass out and they grabbed me as I fell over. I could hear them talking to me, but I couldn’t answer. My husband says that I was convulsing at this point. In the scuffle my gown fell off and they were trying to wrangle my awkward heavy (I probably weighed 200 pounds then) naked body back on to the bed. Some good strong women! They removed a tampon and put in a catheter as they felt it was unsafe to have me get up again any time soon. (My long lost period decided to return the day before surgery!) Inside, I was laughing at how ridiculous it must all look! At this point I didn’t have a shred of dignity left.

The worst thing about the first 24 hours was my incredible thirst. I remember asking every time I saw a nurse check me if I could have a drink. Most of the time they just gave me a sponge to suck on or just a tiny amount of water. I just couldn’t get enough and my mouth and throat felt like a dried out piece of jerky. There must have been some reason for this, but I didn’t understand it and I felt desperate! My husband, Joe was gone all day to a family wedding and I didn’t see him until they moved me into a regular room out of ICU the evening after my surgery. Then I could have him get me all the water I wanted, which was lots! I had heard of DI (diabetes insipidus), which sometimes happens after pituitary surgery, but I didn’t know that this might be what was happening. The third and last day in the hospital a nurse noticed I was getting my own water and scolded me. She said that the volume of water I was drinking and how much I was putting out was to be carefully measured for something called a specific gravity test. No one had told me that and so any tests they ran there in the hospital must have been way off, because I was drinking a little pitcher about every half hour or more.

Our youngest daughter was in Japan that school year as a foreign exchange student. She folded me 1000 tiny paper cranes and sent them in a box for me before my surgery. There is a tradition in Japan that if someone you love is sick and you fold 1000 paper cranes for them, they will get better. Another daughter strung them on fishing line and they were our only decorations on our Christmas tree last year. I took up a garland of them to the hospital and Joe hung them around my bed when we got to my room.

I was in the hospital for 3 days. Each day I got my dose of the VonWillibrand’s factor and oral doses of hydrocortisone, tapering down a little each day. I think by the time I left the hospital I was down to 80 mg 2 x a day. I had two episodes where I felt very sick while there. I guess this is a result of the lowering cortisol levels. Headache pain from the surgery was bearable, w/ Tylenol.

I had a home health nurse come over on Dec. 24 and 25 to give me my VonWillibrand’s treatments. I was sent home with the factor/protein. It was at this time I learned how expensive this stuff is. ($3,000 a dose) The nurse who came on Christmas day said that the IV line in my hand that I had come home from the hospital with was no good anymore. The vein had blown. She would have to put in a new IV. Unfortunately I was very cold and my veins weren’t easy to find and she didn’t have a lot of experience doing this. She had already mixed the protein into a liquid state and it should be injected w/in an hour of that time. She tried 7 times to get an IV started, even in my feet, but no go. I felt bad for her, as she was starting to panic. I was stoic about it, but was beginning to fade and was very glad when she finally threw in the towel and decided to take me to the local hospital where a nurse in the ER was able to get a line in my upper arm and push in the protein. I hugged them both and wished them a Merry Christmas and went home to rest.

On New Years day I asked my daughter Zina to cut what was left of my long hair. I had been thinking about doing this for some time, as my once thick, long braid was about half it’s prior length and not even as big around as a pencil. I hadn’t had a hair cut since I was 7 years old, so it was a big deal for me. But It was a new year, my surgery was over and I wanted to celebrate! I think I looked 10 years younger immediately and definately made my hair look and feel healthier. My natural curl kicked in and I love it!

My recovery was slow and steady, just as Dr. D said it would be. As far as the surgery goes, I finally quit dropping blood clots down the back of my throat by about 2 months post-op. I started riding my horses again at this time. Headaches were really only bad for about two weeks and tapered off completely after a month. The thirst and drinking tons of water gradually subsided around the time I left the hospital, but returned with a vengence a few days after I got home. Dr. D advised me to drink as little as I could and this would help me get over the condition and it worked. He also gave me a schedule to lower my hydrocortisone intake gradually over the next few months. I saw him 2 weeks after surgery, then at 3 weeks post-op, then a month later, then 3 months later, then at 8 mos. post-op. At that time he said I was close to being ready to drop the hydrocortisone, but not quite. But on Sept 20, I decided to quit taking it. I was starting to have bouts of insomnia again and I figured I didn’t need that stuff anymore. I let him know what I was doing and he told me what to watch for and I had no problem. I was also tapering off the Lexapro at the same time and perhaps this contributed to my insomnia, which persisted until February 2006.

If the surgery were the only thing to deal with, getting over Cushing’s would be a breeze. It’s a long year after surgery, watching all those adverse symptoms caused by the high cortisol gradually recede. It is defiantly not a bounce back fast disease! The most obvious was the aching joints and bones that hit me around March of 2005. Until then I had been doing a set of yoga stretches and exercise through my entire illness and only off for a couple of weeks right after surgery, but all of a sudden when my cortisol levels got low enough, I felt like a truck had hit me. I could do none of it! I would wake up at night from dreams of having broken arms and legs as they hurt so much just laying in bed.

Somehow you just get through it. I kept as active as I could. I walked often and even hiked in the mountains although at a slower pace than before. I rode my horses often last summer. I had to use a mounting block to get on and off and I wasn’t up for much more than a 2-hour trail ride. I did all the animal chores starting back just one week after my surgery. (Not because I had to, but because I wanted to. I love going out to feed the critters!) We have 3 dogs, numerous outside cats, chickens and my four horses. It was all I could do to feed hay to 4 horses, but it was good for me and sometime this fall, it got to where it didn’t hurt anymore. The pain has really subsided since I finally got off the hydrocortisol in Sept. Probably timing, more than anything. My hands still don’t handle a lot of pressure well and my feet and hips still talk dirty to me on a daily basis, but perhaps that has more to do with my age than Cushing’s at this point.

I did get another UTI as soon as went off the post-op antibiotics, so at this time Dr. A referred me to a urologist, Dr. G at Alta View hospital in Sandy, UT. I saw him for the first time Feb 4, 2005. He checked me over and took my history and had me come back for x-rays and cystoscopy the next week. These tests revealed that I had a 19mm kidney stone in the L kidney! I remember when I had the CT scans on my adrenals reading in the report that there was a 5mm stone in the L kidney. That was in June of 04. So in 7 months it had grown 14 mm! He said that it had nothing to do with the Cushing’s but I don’t believe it. I know that I was not processing water normally during the time I was sick. I mentioned before I was urinating almost as often as a pregnant woman. At least 4 times a night, which didn’t help w/ the insomnia issue. I also had the dry throat, which I know is not listed as a Cushing’s symptom, but it was real and probably had something to do with how I was processing water. The dry throat gradually went away this year as my cortisol levels returned to normal. I am also only urinating once or twice at night and not having trouble w/bladder leakage.

He suggested the stone was what was causing the UTI and I needed to remove it. Lithotripsy was the least invasive method and we scheduled it for March 7, 2005. Because the lithotripsy causes bruising to the kidney and I have VonWillibrand’s I had to have the “liquid gold” factor again, the day of the surgery and for a week after. I decided to have a midline put in my R arm this time, so I could do the treatments myself and not have to deal w/ a nurse coming and doing it for me. The surgery went well. I spent the next day in an all day meeting for the Utah Arts Council in SLC (I was serving on their board of directors at that time). Instead of eating lunch I found a floor to lie down on and groan and nap. I passed a fair amount of gravel that day that I took to Dr.G when I went to see him around the end of March.

He did more x-rays and to my great disappointment, said that we had to do the lithotripsy again as there was a big chuck (7mm or so) stuck in the neck or pelvis of the left ureter. He said it was too dangerous of a spot to leave it and the stone was still too big to pass. I got another midline put in and another $21,000.00 worth of VonWillibrand’s factor and he did lithotripsy on me again on the 18th of April 1005.

When I saw him for more x-rays on May 19, I couldn’t believe it when he told me that the stone was still there and the same size. He said that we could either do the same lithotripsy procedure again, or he could go in with endoscopic technology up through the ureter, use a laser to blast the stone and then bring out the pieces. There is more recovery pain associated with this method and slightly more risk in the surgery itself, but the advantage would be that he could actually see the stone and be sure of getting it. He didn’t think I would have to have a whole week’s worth of the Von Willibrand’s treatments either, just some on the day of surgery. I had already met my out of pocket maximum for the year, so I didn’t have to pay for those expensive treatments, but I was worried my insurance was going to get tired of all this and dump me! I also really wanted this to be the last time we had to do this. Every surgery would wipe me out for several weeks. I opted for the endoscopic surgery and we did it June 6, 2005.

He was right, it was a lot more painful recovery. And I am not so sure he was right about not giving me the VonWillibrand’s treatments for at least a few days. My urine was dark enough w/ blood that I couldn’t see through it for 5 days after the surgery. I also had to have a stent to bypass the ureter for a week and that thing was miserable! No fun to have it taken out either, but what relief to go back in a few weeks for x-rays and have him tell me that the stone was gone!

That last surgery took me a long time to get over. I slept most of the summer away. It was typical for me to get up and feed the animals and then go back to bed for another 3 or 4 hours, get up for the afternoon, and go to bed early at night. Perhaps it was all the surgeries, but I also think I was making up for at least a years worth of lost sleep.

I was doing things that kept me active and busy physically, but when I tried to go out to my studio and paint this summer, I just couldn’t make it work. I really hadn’t enjoyed painting much the last year or so before I found out that I had Cushing’s and most of this year when I tried to paint it still felt the same. I also didn’t like to read, correspond much, or cook and bake, very unlike me. That had also been the case for a few years prior to my diagnosis. Joe has done most of the cooking this last year. But that is starting to change as of late. I was thrilled when I realized after I put together a batch of pancakes for breakfast a few weeks ago that I hadn’t had to refer to the recipe, I actually remembered it! I have known how to make pancakes since I was a kid, but couldn’t remember the recipe for about the last 3 years.

I read my first book for pleasure back in November, and have read a few others since and now can enjoy reading the paper in the mornings again! Best of all, I have started painting again as of January 2006 and it finally feels good again. My ability to make decisions, stay focused and multi task is coming back too. I feel like my brain is coming out of a thick fog where it has been lost for a long time!

I saw Dr. C in Dec. exactly one year after my surgery. He was very positive about my progress. I have lost 40 pounds without dieting this last year. I am back to 155 and have been there for about 3 months. I think if I want to loose more weight I will have to work at it, but it wouldn’t be impossible the way it seemed to be with Cushing’s. My eyes don’t hurt any more. I open them and look at people when I talk! My hair has thickened back up and much to my surprise I am getting a lot of brown and blonde hair coming back in. All I had left at the time of surgery was thin gray hair. My moustache, beard and sideburns have vanished. My hands and arms are not covered w/ bruises. People don’t recognize me as my appearances have changed so much over the last year. My periods have returned and are fairly regular. My urinary tract is back to normal. No more UTI, my frequency of urination is normal and badder leakage has even improved! I am enjoying cooking and baking for my family once more and feel like I can plan for more than just one day at a time. I feel like I have had a sneak preview on being very old and frail these last few years, and I am ever so grateful to be turning 50 in a few weeks, feeling perhaps like a 50-year-old woman should!

As a side note, I counted it up and I went to 16 different Drs. offices during the 18 mos. between the time I was trying to figure out what I had, through June 2005 when I had my last kidney stone surgery: 2 family practice, 1 optometrist, 3 ophthalmologists, 1 podiatrist, 1 rheumatologist, 1 internist, 2 endocrinologist, 1 hematologist, 3 neurosurgeons, 1 urologist. I hope to never come even close to that record again!

The thing that I learned from this illness experience that I would like to pass on is that you can take responsibility for finding treatment and a cure if you are sick. If I had gone with the first surgeon’s plan of action, my life would be very different now. Do your research, ask questions, be your own advocate. It really helps to have others helping you too. Hopefully someone in your family or network of friends and Drs. will help you wade through this information and be a good sounding board for your thoughts and fears. I was very blessed with a patient, supportive spouse and children, incredible siblings and Mom who helped. I found wonderful Drs. I have friends. I think my friend Nicole was doing more research about Cushing’s than I was. It helped to know she cared to do that. My riding buddy Ellen made sure I got out safely on rides. No matter how sick I was, I always felt better after a ride, but I was too weak to hitch up the trailer and shouldn’t have been out alone on the mountain. She took good care of me! Holly went out on lots of slow hikes with me, and drove me to several Dr. appointments when Joe couldn’t. Kathy too. Many thanks!

I am now going to put up a few of my paintings that I have recently completed. For me that is a huge sign that I am through the tail waves of this disease. The one called Horse Medicine I actually did the drawing on the canvas of the girl and the horse back in Oct. of 2004 when I was still very sick. It was the last thing I did out in my studio before my surgery. It was the first large painting I worked on after I went back to work, just several weeks ago and as I have painted it on it I have had all kinds of feelings, trying to figure out what it is about. I used a photo I took of my friend Nicole with my horses to get the pose of the figures. She has short hair and is about my age, not a girl anymore. But she and I met through horses as preteen girls many years ago. With the gesture she is making with her hand it is hard to tell if she is giving the horse something or receiving something from the horse. I like that, because that is how I feel about my horses and my relationship with them. I receive from them as much as I give to them. I have expressed to many that the horses were what kept me sane during the last few years and probably through out my entire life. They are good medicine for me. I know that this probably sounds pretty corny, but its true. So this painting is about the girl who is still inside this old body and the good medicine that flows between her and her friends who live out in the corral.

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