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About FerolV

  • Birthday 02/09/1959

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    Charlotte NC USA
  • Interests
    light gardening, reading, church choir, 2 grown sons,

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  1. I am a very late entry. Shortly after my 5th anniversary post surgery 2005, in the 6th year, I knew something was "different". That old sense of dread returned. At the 6th anniversary checkup, I popped a "high" on urine cortisol. But it was a one time thing, not repeated in a "sequential lab". Over the next two years, my blood sugar went haywire, not controlled by higher and higher doses of metformin. My weight began creeping up from 150# to just over 180# when the blood labs confirmed in the 8th year, "the monster" was back, with a new head. I was referred to UVA, Dr. Mary V. and her teammate surgeon, Dr. O. They also brought in the GKS EXPERT at UVA, a pleasant "young man", In 2013, October I had debulking of the tumor and 7 weeks later in December the GKS. We put on some fine music and I took a nap. Here I am in the 4th year since second round of surgery, and all labs are excellent. Getting OLD isn't so much fun, but endocrine is OK.
  2. To all my Cushie sisters (and brothers!), "Peace Be With You", as we say in our church tradition. Whether you believe or not, there is a "Higher Power" who can support us when we are down. How many lonely nights before the internet, "social networks" and forum boards, did so many of us suffer alone? In agony and torment we cried out in the night (and day - beating fists on steering wheel), saying "Why ME, Lord, Why ME?" Still some inner strength kept us going, when all seemed lost to us. Some measure of reason kept telling us, this trouble was real, not imagined nor of our making. Keep the diaries, keep the labs, keep the records of abnormal events and symptoms, and those lovely before and after photos. There IS AN ANSWER. Whether it be Cushings OR something else, push on... the answer awaits. Here and now, there is a space (virtually) to share feelings, realities, and sometimes T. M. I. It should be a place to safely state what we all have felt one time or another, or NEED TO HEAR. If something hits "a little close to home", DON'T take it personally. Just step back for awhile, and come back with a clear head. Sometimes we get so immersed in all the emotions communicated, it can be a burden. Remember, there is also Good News to Share, in so many ways. When you are ready, come back to the fold, and be received. We are burying a church member on Monday, new to us in the last year, but she had so much to offer and was getting involved in many areas. Yesterday, she was involved in a fatal accident that shut down a 4 lane road. She leaves behind 5 daughters, and grandchildren, and one granddaughter in particular she was bringing to church and recently was baptised. This child will be devastated by the loss of this loving grandmother. My point here is.... Cherish this life with it's frailties, it is the only one you have, cherish those around you, forgive them their apparent faults. Be at Peace with yourself.
  3. I love watching my puppy play in the snow.

  4. Pardon my ignorance, when I saw Loperamide, I automatically thought about my IMMODIUM "rescue tablet (for diarrhea)". When I looked at the generic packaging, it says "loperamide hydrochloride". Is this related in any way? I have used it numerous times during prolonged gastric distress, but don't want to be using the wrong medicine if it is adverse affecting.
  5. I had to call the endo's office to get the lab report review from the last UFC test returned after Thanksgiving. Thankfully, on review, the results were within "normal range". It may be that stress from most recent job change caused some elevation in the prior 24hr UFC from October. So next semi annual visit is scheduled for April 2011. We have enjoyed our first snowfall of the winter, and I am ready for it to be gone! I did get some cute pictures of my Pepper playing in it.
  6. Sept 30, 2010 was the 5th anniversary of my life after Cushing's Tumor, or so I thought. During my fall maintenance appointment with endocrinologist, the routine lab tests turned up an elevated cortisol level. I had to do another collection and turned it in earlier this week. Results are pending. For quite some time, my average weight was holding between 150-154 pounds, but since this fall, has been creeping up again, now hovering around 158-160. This takes me back to 2002, when the creep up began pre-surgery. I am on METFORMIN for A1c control, and had hoped that taking it more regularly would enhance my metabolism and bring the weight back down. Still waiting for that to kick in while I await cortisol results.
  7. I am back on METFORMIN again, after about 2 years without. My initial period did not go so well, as the endo had me start out at a FULL dose of 2 tabs a day, rather than reintroduce gradually. I never took that much before. After I got ill 3 days into the 2 tab a day dose, I stopped, got better, and then tried the more gradual approach, with only 1/2 tab for several days. After a few weeks, I am up to 2 tabs a day. Funny thing, now my fasting blood sugar is running higher than before, but I am slowly loosing weight again, which I like.
  8. Lab reports from my last follow-up visit for CUSHING's indicate that my blood sugar has continued to "creep up" since 08-25-06, when it reached the lowest point of 5.6 for A1c. Since then my 6 month maintenance visits show that I held around 5.9 to 6.0 for a couple of years, then I was back up to 6.3 with my last visit in September. I was prescribed METFORMIN again, starting out with a whopping 2 pills a day, 1 AM and 1 PM. I quickly felt bad at this level, and within a few days, believe I was heading toward LACTIC ACIDOSIS, from the contraindications listed and a familiarity with the symptoms then experienced. I stopped the MET for a few days to let it clear my system, and then started back in more gradually, with 1/2 tablet in the evening, and have work up to 1 tablet in the evening and 1/2 in the morning. No further contraindications yet, but still closely monitoring my progress. My morning blood sugar pricks do not seem to show any immediate progress, but then I haven't been eating right with the guys gone. Very much into "convenience food".
  9. Spring in the Carolinas... Flowers blooming, sun shining, pollen on the breeze.... Many days I hope I am really past all the Cushings issues, when I wonder if some new ailment may or may not be related. Add the Scoliosis to that, and it is no wonder I hurt most of the time from something. Then... I am no spring chicken either. Stuff just falls apart when you are older. Recovery is slower, if at all. I take my pleasures in the simple things. A good night's sleep, a blushing rose on the stem, my periennials making their appearance fresh this year. A cool breeze on a comfortably warm day, resting on my back yard deck in the shade. Finding "Beautiful Music" again on Sirius radio. Nearly 3.5 years past Cushings surgery, I have gained about 15 pounds back from the initial loss, mostly because my lower back is slowing me down, and I still enjoy eating as if I was on metabolism enhancer (Metformin). Hypertension is under control, diabetes is borderline. I may need to go back on medicinal control for diabetes. The proctitis is affecting that, but it seems to be under control, for now.
  10. Christmas in the Carolinas, complete with a trip to the Blue Ridge mountains. Of course we had to stop and visit husband's favorite fishing hole along the way. It was a bit too cold to stay for long. Cushings? 3 years + post surgery, I am still on "hormone therapy" for my monthly cycle, and in early February I have a round of doctor appointments scheduled for annual and semi-annual visits. My sugar level seems to be under better control, with my latest problem - chronic proctitis, under some control. One thing leads to another, to another, with Cushings.
  11. I have received copies of my latest lab results, and in my unexpert opinion, they look pretty good. My endocrinologist seemed to be satisfied with the findings as well. Vitamin D 25-OH Total 61 ng/mL (20-100 ref range) I have been taking 50K unit supplements weekly since last April. My February reading was < 7. Glucose 100 (70-99 ref range) Hgb A1c 5.9 (4.4-6.4) Urine creatinine 141 Urine Microalb <3.0 (0.0-23.0) Urine Cortisol 16.6 (4.0-50.0)
  12. A recent Cushings Board post, I kind of like the analogy, so I am sharing here: The problem lies "in the nature of the beast". I love the Michigan Frog analogy I read yesterday, where the frog performs when no one is LOOKING. In my 16 years from initial symptom, it was rarely the same symptom twice. Even when there were multiple symptoms, you couldn't tell when they would be consistantly active. Our little beast, will lie dormant for a long while, then awake & growl, take a turn out of it's lair, then come back in and lie down for another nap. This is when we have the "occasional" symptom. After a long while, it'll get hungry and decide to awake and feast. This is when we have the multiple and escalating symptoms. But you gotta catch the beast WHEN IT IS AWAKE, to get those positive test results. You have to be like the hunter. Waiting, watching, taking notes of the beast's activities. The waiting is the hardest part. You have to be ready to get a picture of the beast, when it finally leaves it's lair, which is also very hard, because it is highly camouflaged. This is a thing to be studied, with great patience, in order to get the "greatest prize", A DIAGNOSIS! YOU ARE THE EXPERT when it comes to knowing and studying your own body. NO ONE will ever know it better. The tests DO work, in time, over time, when the beast is only occasionally awake. It'll leave behind it's spoor, the occasional symptom, but you won't be able to see the beast (test positive), because it is already back in the lair napping again. You have to learn to recognize when it may be preparing to come out again, be ready to take that picture (test) when it is AWAKE. Most everyone here has been working on studying "the beast" and have become pretty proficient at it. I am amazed by all the clinical detail I still don't quite understand, because my testing was less than 3 months when my surgery was set. I got the generic interpreted results from my endo, not all the lovely detail they go into here. And they have been doing it for a while.... those diaries must be getting pretty full, and file folders of lab results? I am impressed. The newbies just gotta learn to be patient. While the internet was new, and I was searching for my "package" of symptoms, I was usually led toward menopause. Most of my stuff filled that list nicely, but I was only 30 something and I wasn't buying into that one yet. I didn't even HEAR of Cushings until 15+ years into my search. So if YOU SUSPECT you have Cushings, you're in for a long bumpy ride. It is NOT A QUICK FIX, until it is VERY LATE in the process, like mine was. It WILL WEAR YOU DOWN, emotionally and physically. IF YOU DO have the ACTH producer, the cortisol will push your limits of endurance. For All.... God Bless you in your search for answers. May He give you strength to endure what MUST be done, and Rest for the weary.
  13. Surgery was 09-30-05. The following are copied from messages sent to family and friends at the time, providing updates on my post surgery condition: October 3rd Flip was in good spirits today and enjoyed the visitors. She got an IV of antibiotics that the doctor ordered. Funny thing is after her dinner tonight she began to run a fever, although a mild one of 100.5. Needless to say ANY fever concerns me so please continue to pray for her. I do not see her coming home until at least Wednesday.. Definitely not until the fever breaks. October 5, 2005 Surgery went very well according to docs. I am recovering @ home for the month and possibly longer. The tumor was successfully removed from pituitary. The pituitary gland is located center of the skull behind the sinus cavity, and is the "traffic director" for all other glandular functions (hormones & related chemical production). This tumor, for those who may not be aware, was causing a high level of adrenaline & cortisol (stress hormone) production. This in turn caused various systems to be "miscalibrated", being female that causes alot of things to be "out of alignment". I am now on drug therapy, which is basically going to help me wean off the "overdose" of unnatural high cortisol production. The analogy I have used is, "it's like being on an overdose for 16+ years and going cold turkey" with the tumor removed. I can tell with the tablet version, when I am needing a "fix". I am on 12 hour cycles with the tablet version. October 14, 2005 The last week has been quite eventful. My last update on Thursday 10/05/05 was looking pretty good. On Friday 10/07 things went in the toilet before I even got out of bed. About 0745 I developed a "bleed" that nearly took me out. I will pass on the graphic details, but I passed out once in the ambulance and twice in the ER. I was taken to emergency surgery for a look and repair, but the "bleeder" had sealed itself up with all the clotting in my sinus, thus remained undetermined. The sinus was packed with antibiotic gel-foam and I was kept overnite in ICU due to low blood pressure, being released 10/08 when my blood pressure remained somewhat stable above 100 over 60. I was pumped with about 4 bags of saline & one of glucose, and a piggy back of blood "expander" during my stay. Again I thought I was doing OK through the remainder of the weekend, when Monday morning 10/10 I became agravated about something while I was eating breakfast, and popped the bleeder again. I had not been taking my BP med due to low pressure from Friday's hospitalization. I think my BP jumped and fractured what ever seal there might have been. This time was not as critical as the first time, but taking no chances I rode the ambulance again to ER. This time the doctor placed real packing (mini-tampons!) in the sinus. I was released Monday as out-patient. I went in today to have the packing removed, and expecting more than the usual discomfort, took more of the pain med than I had been taking. I had only been using 1/2 tablet every 3 hrs, when prescribed was 1 - 2 tablets every 4-6 hrs. I took 1 1/2 tablets to prep for today's procedure. I passed out again after the packing had been removed. But then, the doc had also sprayed a local pain killer and blood vessel constrictor in the sinus as well. I think it was a combination of events & chemicals over the last week that caused today's event. When he sprayed me again a second time with the vessel constrictor, I again became slightly dizzy. Hopefully I will remain on stable path, and continue healing. October 26, 2005 I am feeling well enough I guess at this stage of the game. Being down for so long takes some time to recover from as well. Have to build up my activity level, to prep for return to work. Pathology report confirms the tumor was an ACTH (adrenocorticotropic hormone) producing tumor. My Cortisol weaning has begun already, with morning dose @ 20mg, and afternoon dose dropped to 10 from 20, dropping again to 5mg in mid-November. October 28, 2005 The only real indication at this time is that I have done very little for a while and need to build up my stamina again. I am seeing what appears to be a drop in my blood sugar with the decreased afternoon cortisol dosage. The rest will take time, just as they did to appear. A LOT of people seem to think that there should some kind of "quick fix", but this a multitude of slowly appearing symptoms that will take time to regress. I hope to see some clearly apparent manifestation in a year's time. That will be in answer to the cortisol weaning process, which must occur gradually so I don't send the old body into withdrawal. November 19, 2005 As of today I am on 20mg (same) cortisol at wakeup, and 5mg (reduced 2nd time) at midday meal. The endocrinologist INSISTED I get a flu shot, under the "chronic health condition" scenario. It took a couple of weeks but I found one in an unlikely place, our OLD neighborhood, at an internist's office.
  14. I realized after reading through the old blogs, I never finished the Surgery Story. I went home after an overnight stay for the bleed one week post-surgery. I was so afraid to leave. With my oxygen content low due to extreme loss of blood, I was rather fragile. My blood pressure was still borderline low, even with all the saline they have put in me. But send me home they did? At home I did VERY little for the next few days. I chose not to continue the blood pressure medication, because it was so low, even taking readings at home with my newly purchased BP cuff. Jon (younger son) came home for the weekend from school, to check things out. Older son George was also still with us, in between college and job. They hung out upstairs with the big TV and PC. After the guys went to work and school and things settled down, on Monday morning I went upstairs to check my e-mail and the like, and found the upstairs den a mess. I got aggravated about it, but did nothing at the time. Mother-in-law Doris was making breakfast, and I went back down to wait on it. During breakfast our conversation turned to the mess I found upstairs. Doris said she would pick it up, not to worry about it. But, I was already upset. A few minutes later, I again tasted that salty contraindication? Doris called 911 for the ride back to CMC South Hospital. This time it was not as aggressive in flow, but I wasn?t taking ANY chances. I was this time leaning over the kitchen sink when the E M T?s arrived. We played all the same games again, and prepared for the ride to hospital. Upon arrival at the hospital, the bleeding had again self-clotted. I was given some pain medication to prepare for a sinus pack to be inserted. Son George was with Doris waiting upon the ambulance arrival, with the ambulance taking the scenic route some 3 miles longer that the 1st ride 3 days earlier. George stayed with me while the sinus was cleared and the packing was inserted. I asked George if it looked like what it felt like, yes indeed, a tampon! That was a novel use for the product. I live with the packing for about a week, having to keep it moist with saline solution. I spent this week in the living room, on the recliner, with meds and tissues, water and anything else needed for my attempt at comfort nearby. I didn?t want to get hooked on the pain med so after the first couple of days, I dropped back to a half tablet per 3-4 hours. It was a chore to get up and take care of nature?s call, being careful not to force any activity. I had my next appointment with the EENT surgeon, Dr. Hunter Hoover. He had heard about my 1 st trip from the servicing doctor, Dr. Miltich, and what the EMT had told him at the time. My bathroom, ?looked like a murder scene? with blood everywhere. Doris later told me, she didn?t dare leave that Friday, until the bathroom had been cleaned up, I had spatter everywhere. It turns out that Dr. Miltich was the EENT that confirmed my hearing loss in my left ear back in 1990 and I still had his business card. Dr. Hoover prepped me with a relaxant and a local topical anesthetic. This was for the removal on the packing. With the packing removed, he then prepped me again for the inspection with an optic camera of the sinus cavity and the surgical site. They moved me to another room for the wait while this round of medication set up. I got comfortable in the chair, thinking that I might go to sleep or something while waiting. In fact, I did pass out, propped in the chair. When I came too, they had the chair laid back and were checking my BP. It is my belief that the medication overwhelmed me, with pain medication I had taken prior to and upon my arrival, in combination with the local meds. By the time I had come to, they believed the local anesthetic had worn off, so the applied another round and kept a closer watch. I did get faint, feeling nauseous, and Dr. Hoover laid the chair back again pre-empting another pass out. I made it through the inspection finally, but was wiped out for the rest of the day. The report was good as far as the surgical site healing. All this was documented and shared with the company?s FMLA agency. I was granted an additional week in recovery. The rest of my recovery was cautious and well behaved. Doris stayed with me 2 weeks post surgery, then my mother was retrieved from Asheville for a week?s stay, then my father came up from Columbia SC and stayed with me for a few days. While my parents were there, I had to take a more active roll in the home and my care, as neither one of them is particularly well. My folks were around to keep an eye on me and call for help if needed. None was by then of course and we had pleasant visits. More later as I think of it?
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