What Your Doctor Doesn't Know Can Hurt You

I’ve had chronic sinus problems since age 3. My current Ears, Nose & Throat (ENT) specialist is excellent. I’ve been in his care since 2007. For about two years it seemed I was constantly on antibiotics and my infections seemed to build up a resistance to whatever antibiotic I was prescribed. We tried every adjunct sinus treatment available. The end of 2011 I had my third sinus surgery by my current ENT. He mentioned he had wanted me to be on IV antibiotics (an in-home treatment) for a period of six weeks beginning as soon as possible after the surgery and before any new infection could surface.

While the thought of having an IV in my arm for that long was not appealing, I agreed with the strategy of killing the bug that just wasn’t clearing my body. Having the PICC line placed was not a big deal (a tube in the arm where the medication would enter hopefully for the entire duration). A few days later I was given my first dose of a medicine in the hospital but had hives erupt within half an hour. Several days later a new medication began, Aztreonam. I tolerated the first treatment at the hospital. When I got home I began to read the information about the medication that had been handed to me. Immediate panic set in as I read the names of three sulfa drugs for which I had indicated I had allergies. The infectious disease nurse supposedly monitoring my treatment assured me that most with allergies to individual sulfa medications could tolerate Aztreonam.

Home nurses visited twice a week and more if I was having issues with my dressing or supplies. They would always ask me about symptoms or side effects. Several minor side effects developed but I knew I would need to tolerate some to get through the ordeal. In my second week of treatment I called the doctor in charge of the IV (not my ENT) and complained my vision had gotten blurry. He replied that it had to be something not associated with the medication. I’ve never had eye problems and the only change in my life at that point was the IV medication. About two weeks later I could tell the blurriness was worse and spoke to both the IV doctor and the pharmacist with the home nursing service. The two conferred and again stated the eye problem should have no connection to the IV.

I made an appointment the next day to see my family doctor. She suggested I see my optometrist or an ophthalmologist as soon as possible to thoroughly examine my eyes. Fortunately I was able to see my optometrist in a few days. She mentioned I had developed cataracts which made my world look hazy and my eyeglasses prescription had changed. She also said insurance would not cover cataract surgery if it could be corrected to 20/20 vision with glasses. In the time it took for my new glasses to be ready, I noticed the hazy vision had worsened. Indeed my glasses prescription had changed in that 2-3 week time period. The optometrist ordered new glasses with the revised prescription; I didn’t have to pay for the first prescription.

After getting the second prescription, the haze worsened again. I decided it was time to find an ophthalmologist. Even when my cataracts were bad enough, I’d need an ophthalmologist to perform the surgery. I just sensed something odd was going on and wanted more comprehensive care. I knew an ophthalmologist office nearby with a good reputation and they were able to see me the following week. In the meantime, I googled drugs with cataracts as a possible side effect. Only a few drugs applied but the category of sulfa drugs was right there. How could my infectious diseases doctor not know that and connect the dots? I was furious but also blamed it on the drug company for not educating the doctors sufficiently. Or perhaps that was an intentional oversight. I did keep my ENT apprised of all developments and expressed my opinion about the Aztreonam and my loss of vision.

As upset as I was about my eyes, it did turn out to have a positive result. I was very impressed with my new ophthalmologist and the office staff. He was unable to tell if the cataracts were the result of the Aztreonam or due to natural aging. However, several doctors along the way mentioned how rapidly the cataracts seemed to be advancing. Dr M. (the ophthalmologist) told me I could have cataract surgery now or later and the insurance would cover cataract surgery now. I hated the blurry vision so I said I wanted the surgery as soon as possible. I was set up for both eyes, a month between surgeries. During the pre-op appointment for the first surgery, I was told a special lens was available that would correct my astigmatism. I’d worn glasses since age 12 due to astigmatism. After agonizing about the cost of the lens that would not be covered by insurance, I opted to have the astigmatism correcting lens.

For those who don’t know, cataract surgery is pretty much a breeze. Anesthesia for the eye is through eye drops only. I was awake for the procedure with a bit of anti-anxiety medication through an IV. I could see better the next day. I had the right lens to my glasses removed and used them and a pair of readers until the second surgery. I have now had both eyes done. I’ll know next week if my left eye corrects to 20/20. The right eye already has. A month after my post-op, I’ll find out if I need prescription glasses for distance. Hopefully, I’ll just need readers for close up.

The main point of my sharing this is to encourage you to trust your instinct. We tend to put our faith in doctors as if they could do no wrong but sometimes they don’t know everything. Whether the Aztreonam had been stopped after my first call two weeks into the medication, I still would have had cataracts. If the hospital had shared the information about the contents of Aztreonam before it was in my body, I would have refused because my worst medication reactions were to sulfa drugs. If only…

I shared about the cataract surgery for those who might be interested in how non-traumatizing it is. The only side effect I had was a headache for two days. Remember to be your own best advocate in matters of medicine. I thought I was but learned some new lessons with this experience.

 Coming out of the haze.

Finally...Road to Recovering

Since my last post in September 2011, I have successfully recovered from all prolapse surgeries. In January of this year, I set a goal of losing a pound a week to my goal of 30 pounds. The first 20 pounds went on in the two weeks following my first 2007 surgery. It has been 18 weeks and I've lost 15.5 pounds and am still going. Having lost that first half of my goal, I can see I have more energy and am not as inclined to sleep as much. Getting back into physical shape after so many surgeries in the past five years has been daunting. Finally, I feel I'm making my way back.

Not having to worry how close I am to a restroom when I leave home is such a stress relief. I've been building up my stamina to be out for several hours walking leisurely through stores so I can enjoy a leisurely vacation and do some outdoor walking in a few months. I can walk 1/2 mile and burn 100 calories which is child's play to most people. But I'm very proud to reach those goals.

Anyone undergoing such intense medical issues should be aware of the mental toll, if any. I was prone to depression before the pelvic prolapse and went into a tailspin afterwards. Unfortunately, I didn't recognize it as increasing depression. I thought anyone would feel "this badly" given the circumstances. I wish I'd known how depressed I was a year before I realized I needed a much higher dosage of antidepressant. I've been on a new medication for over a year that has been wonderful.

I skipped some details in my journey to jump to the present so I can speak of my most current issue with medication and cataracts.  For those who did follow my journey and self-education about my pelvic prolapse, thank you. And I hope it helps you and/or someone you know.

Colo-Rectal Repair to Bladder Therapy

To say I was devastated when I discovered a rectal prolapse less than six months following the surgical repair which led to my requiring a blood transfusion was an understatement. I had the transfusion, abscess, and now a complete failure of the surgery itself. My body was exhausted, my emotions depleted, and the correct surgery was definitely major surgery.

It was in-hospital with a five-day stay. The incision went from belly button to bikini line. I don't recall the exact medical steps but it was basically pulling the rectum up. I was told some of my colon might have to be removed and a very small part of it only, thank goodness, had to be excised. A mesh sling holds my colon up so it doesn't place pressure on the rectum.  In preparation for the surgery, Dr. McKenna recommended an epidural for pain. I had always been terrified of anything going into my spine.

The day of my pre-admission testing and consultation, I argued ardently against it. The anesthesiologist said the pain would likely be unbearable without it. I relented and signed the release. The morning of surgery I was terrified of the epidural because it had to be done while I was wide awake. I was taken to a room where I was surrounded by good looking young interns. lol. One person reassuringly held onto me and told me everything that was going on. Honestly, there was no pain. I was so relieved to hear "it's in". Apparently having an epidural was a procedure not often viewed by interns or they had a new class but I had plenty of reassuring looks and hand holding.

Following surgery and for the next four days, I was amazingly pain free. The wire had actually just come loose and I was feeling around for it when Dr. McKenna's team came in for their daily rounds. They said they were there to see if the epidural line should be removed. When I said I thought it had just come out they said that was highly unlikely and the team leader went behind me. He held up the wire that had indeed come loose and announced, "The epidural is officially removed." Another lol.

A morphine drip was hooked up immediately. From no pain to OMG pain in a matter of hours. I requested oral painkillers about six hours later because the morphine seemed to do nothing. Pain was manageable with the oxycodone or hydrocodone, whichever they gave me, and I was released on Day 5.

After several follow up visits, I realized there was still some weirdness which turned out to be a mucosal prolapse. Dr. McKenna had warned me that, because of what Dr. DeLeo had done, he wasn't able to guarantee the outcome. Had he been the first to repair it correctly, he could have pretty much guaranteed there would be no more prolapses. This secondary prolapse was not as large and was manageable. While the doctor had described what he could do to "fix" it, he must have been having a bad day because it was something he would have done in his office without anesthesia. He stated it rather gruffly leaving me to believe I was a pain in his *ss. I was not going to have anything to do with a repair without anesthesia. I hoped exercise over time might tighten the muscles and lift it naturally. It did create pressure from the inside; however that didn't become as noticeable until after my bladder therapy.

While I was urinating up to 20 times a day, I kept being advised the bladder would have to be the last of the three orifices to be addressed. Finally I was referred to the bladder specialist.

P.S. More to come about Dr. McKenna and repair of the mucosal prolapse. He became very caring and respectful with help from my family doctor. Dr. McKenna was, to me, like Dr. House. The best surgeon...no bedside manner. I wouldn't have wanted anyone else doing the repair.

Hysterectomy to Mayhem

While an awful topic to address, I believe it is necessary because it might save someone else from having the same problem when it would have been so easy to stop. Since the time of my abscess, I had virtually non-stop, uncontrollable bowel movements. It was such a horrid time. As much as anyone hates to think of ever wearing Depends, I have to say they never let me down even though I froze in horror on so many occasions.

I became a recluse except for doctor appointments. I had gone into my ob/gyn appointment with that problem but Dr. Harkins said the main issue was to do the hysterectomy which might resolve the problem. It didn't. After several follow ups to the hysterectomy and no resolution to the bowel problem, I was referred to a gastroenterologist. He took one look at my medication list and immediately took me off two medications, each prescribed by Drs. McKenna and Harkins.

My body responds differently to most medications than one would expect. I was being monitored so closely but no one was monitoring the meds. Two were to prevent constipation and, at that time, I just did what I was told.  The great lesson here is to be your own advocate and ask about medications if your body is not doing what it is supposed to and no one seems to know why. I lived with that awful problem from early September 2007 until January 2008. I was simply in survival mode and really not thinking about one moment to the next. Hopefully anyone reading this will think to ask if you find yourself in a similar situation. Medications can cause very unusual body responses.

Within two days of following the gastroenterologist's advice, I was back at a more manageable level. No more Depends but needing the bathroom 10 or more times a day. I had a special diet that also helped. It was January 2008. I tried returning to work in February with clients understanding I might need a mid-session break which I hated to do.  But I was back at work.

Later in February,  I was accompanying a client to a meeting as her advocate. When I stopped in the restroom on arriving, I saw my rectal prolapse had returned with full force. Dr. DeLeo had "repaired" it in my near death surgery only six months earlier. I was once again devastated.

Returning to Dr. McKenna, he informed me that the previous surgeon had used the incorrect method of repair for my age and level of activiy (prior to the prolapses). He scheduled me for a colorectoplexy, abdominal surgery to repair the rectal wall and possibly remove a portion of my colon.

I tried to return to work until just before the surgery but my emotions were in meltdown and I could no longer keep my focus on my clients. My life as I knew it was changing.

The Missing Cyst

In August 2007 I had surgery to remove an ovarian cyst but was told post-surgery that no cyst could be found. The surgeon proceeded with the next surgery a few weeks later...see previous post. At the point Dr. McKenna casually mentioned "except for the cyst on your ovary", I felt so many feelings flood me at once. Shock, betrayal, fear. What had I allowed this incompentent doctor to do to me.

Dr. McKenna was kind to refer me to the head of Micro-Invasive Surgery in the Hershey Medical Center ob/gyn department. Dr. Harkins thought death had walked into the room when I arrived at his office. He ordered the correct imaging to see what was going on. He identified several issues from the test in addition to everything that had been identified in the previous analysis sent to Dr. DeLeo.

Dr. Harkins recommended a hysterectomy as he believed that particular issue should have been done first and may have avoided the other two prolapses. Hindsight is everything. In October 2007, the hysterectomy was performed. We had decided ahead of time to keep my right ovary if it was viable. He planned to remove the fallopian tubes, the left ovary and the cyst. However, he told me post-surgery, that he could see right away through the laparoscopy scope that I had a "frozen pelvis".

A "frozen pelvis" is when endometriosis has wrapped itself in and around the uterus as well as organs outside of the uterus. I was a mess. He spent a long time removing the endometriosis and found beneath it a healthy pink right ovary. There was no way a trained surgeon could possibly have missed what he found. Dr. Harkins showed me the video of his procedure. I was stunned. Thank goodness I was led to him. The irony is I was terrified of a male ob/gyn yet it was a women who caused harm and a male who saved me.

Connecting the Missing Dots

It has been so long since I've kept this blog up to date. I reread my posts and realized there is a blank ending at the end of the 12/22/08 post where Dr. DeLeo had read my MRI, informed me of an ovarian cyst, and scheduled a laparoscopy to remove the cyst followed several weeks later by the rectocele.

When I awoke from the laparoscopy, she informed me there had been no cyst but she "cleaned things up" and I would be fine. All okay for the next surgery. In retrospect, Brian would say she viewed me as her "cash cow".  In my earlier post I explained what happened following her rectocele. I was hospitalized requiring a transfusion due to hemorrhaging during surgery. A week after surviving that ordeal, I experienced a rectal abscess.

Brian had called Dr. DeLeo's office a week after the botched up rectocele. I had already made the decision to take myself out of her care but Brian thought she was the one who needed to determine if what I was experiencing was a post surgery issue. All I can say is that I had painful burning. Her office told me I was to do nothing. Later that day, the burning had intensified to where I was crying. I called the Penn State Medicine after hours nurse triage line. They told me to go to the emergency room right away and they would call ahead to say I was coming.

I had only a half-hour wait in a packed waiting room. Via CT scan, an abscess was identified. A drain had to be put into my back and I was in the hospital about five days with no food. I had to return home with the drain still in my back. I was a physical and emotional mess. The drain was finally removed and I had a follow up appointment with the doctor in charge of the colo-rectal department, Dr. McKenna. By that time I was so fearful of the previous surgeries handled by Dr. DeLeo. I asked Dr. McKenna if everything else looked okay in my pelvic area.

He replied it looked okay except for a cyst on my ovary.

To be continued in next post.

Project Endometriosis

Project Endometriosis by grace2244 (kinda slow) on Polyvore.com

Information regarding the project can be found here.

Final Verdict

Today is the end of a three-year long attempt to have my first surgeon's license revoked or at least suspended. In addition to finding an attorney, I filed a complaint against the surgeon through the State Board. Today I received notification that the case has been reviewed thoroughly but no action will be taken against the surgeon.

The attorney did not follow through with meeting with my good surgeon. In spite of all the damage she caused, the likelihood of winning a malpractice suit is very low unless you die. I believe I shared before that the attorney had knowledge of numerous complaints/lawsuits filed against the doctor in the past but none of the charges "stuck".

We do believe she has connections and is untouchable. It's been an unbelievably frustrating journey to this point.  I have to give up on any means of stopping her from harming other patients.

If I had died, the proof of her negligence was there. *sigh* Onward I go with my life.

Three-year Anniversary

August 24 will be the third anniversary of the day I was taken from an outpatient surgery facility following my rectocele to the emergency room of a hospital. I survived the night but wasn't sure I would wake up in the morning. When I fell asleep, a blood transfusion had been started. I came to peace with knowing I might not wake up.

I haven't reread my earlier posts. The hindsight is that I had a "frozen pelvis"...shut down by endometriosis...that had gone unidentified since the late 1970s. After surviving that ordeal, I placed my hands in the surgeons of Penn State Hershey Medical Center. I was experiencing pelvic prolapse and Dr. DeLeo had treated it as three separate issues rather than look at the big picture. She had also done the surgeries in the wrong order to relieve the pressure from the pelvic floor.

The ob/gyn surgeon at Hershey Med performed a hysterectomy which he believed may have made the cystocele and rectocele unnecessary. But, of course, I hadn't seen him first. Less than a year after the rectocele, I experienced another prolapse. The Hershey Med surgeon said Dr. DeLeo had used a procedure not recommended for my type of prolapse. His procedure was abdominal surgery with 4 days in the hospital. Finally, after starting to recover from that surgery, I was able to see the bladder specialist. He referred me to outpatient physical therapy which healed my issue without further surgery.

Somehow my bladder was only holding one ounce of fluid instead of the normal 20 ounces. The "women's therapy" was exercises as well as use of a painless probe that measured strength and also stimulated the internal muscles.

I've been on disability for about a year since I was unable to return to work. Healing from almost three years of barely moving is no easy task. What has worked for me is aquatherapy. It began with a shoulder problem but since I found I could move so easily in the water, I am also conditioning/rebuilding the barely used and atrophied muscles. Strength is slowly returning. New muscles are felt as new exercises are introduced. I can stay awake for a day without a nap.

Because of my history of trauma, my mind/body stored the aftermath of the transfusion and subsequent abscess as trauma. I'm still holding 20-30 pounds of trauma weight when my weight should only be about 100-105 because of my height. I've lost inches with aquatherapy from April through now but have put on 1-2 pounds. That battle to lose the excess weight has begun but has yielded no results yet.

I see where I made the first mistake but I can't go back there. The pelvic prolapse has impacted my life in many ways. I should be grateful to be alive. I have new hopes and dreams and know they can be realized, yet I always question whether I have the energy it takes to achieve them. So baby steps and one day at a time are still the rule.

I found a website today for the Endometriosis Online Arts Project. I'm providing the link for others who might be interested. Now I'm off to do an art set expressing my feelings about endometriosis.

We pause for personal identification

An apology to readers for having no entry. Am working through some personal issues and have also been collaging online to process whatever is going on. Today I collaged my medical nightmare. My blog posts will take you through its meaning, but thought I'd post it now for lack of a recent post.


First Do No Harm by grace2244