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Category: patient advocacy

The Vulnerability Of Being A Patient

August 15, 2013 / / 6 Comments

This is a health related blog entry that is not just about Sjögren’s. I say this because I know that sometimes non-Sjögren’s people read the blog title or the first few sentences and decide they are not interested in the subject. I know this because well, people have told me. And for the record, I think that is awesome because I love honesty and because I frequently do the same thing when reading blogs. But this one is important because at some point in our lives most everyone, even my extremely healthy husband, has to see a doctor in this country.

We all know what the state of health care is like in this country and to be honest, I have no desire to get all editorial about that. But because I am constantly immersed in the health care system, people ask my opinion a lot and I read stories and scenarios online about other patients who find themselves in situations that they think are unique to them. So I am going to share with you all a recent scenario that happened to me and how I dealt with it. It doesn’t mean that what I did was right for everyone but I want to share it because I think it is important. I wish it wasn’t because frankly, I would rather not talk about my bladder but for the sake of the greater good, I will.

About a year ago, I experienced some new symptoms that strongly mimicked the symptoms of a urinary tract infection (UTI). Pelvic pain and a feeling like I had to go to the bathroom all the time. I was treated with antibiotics and my symptoms seemed to go away. Since that time I noticed these same symptoms on a few other occasions; sometimes I would be given antibiotics although looking back, I realize that I never had a positive urine for an infection. I was being treated primarily because of my symptoms and because I kept telling my different doctors that I thought I had a UTI. Sometimes the symptoms went away on their own. In the back of my head, I knew something else might be going on because things just didn’t seem “right”. When I went to urinate, the urine wouldn’t come out as easily as it typically did and I frequently felt like I had to go even though I had just been in the bathroom ten minutes earlier. I kept mentioning this to different medical professionals but I never made a big deal about it because it always went away and when you have an autoimmune illness as complicated as mine is, you cannot possibly pay attention to every single physical symptom. You would go crazy, trust me. Plus I was dealing with other physical issues, planning a wedding, trying to get a book published, had a death in my family, and all kinds of other more important issues.

Then the second week of June 2013 came and the pelvic pain came back with a vengeance. I don’t think it was a coincidence that it was right after my wedding (good stress). It would still come and go but I was really struggling on the toilet. Sometimes a trip to the bathroom made me sob it hurt so much. I had my urine tested and it was negative. I began to wonder if I had a Sjögren’s related complication called interstitial cystitis. So I called my nephrologist, who is a kidney doctor, and he referred me to a urologist, a bladder doctor. It was a doctor I had heard of and he was based out of a local community hospital that I hadn’t been to in years. I read some reviews online of him that seemed favorable. For the sake of avoiding a lawsuit, we will call him Dr. B (for bladder).

I was a little nervous about seeing a new doctor, especially because my symptoms waxed and waned and I had my credibility doubted in the past before I was accurately diagnosed with Sjögren’s syndrome. The whole thing got off on the wrong foot because I showed up for the appointment only to find out it had been the previous day. I had been given the wrong date. I then had to wait another several weeks to get another appointment and my symptoms were worsening by the week.

I finally got to my new appointment day with Dr. B.  I registered in the lobby of the hospital where I found out they had a lot of my information wrong. I then proceeded to the clinic/office and I was actually confused where to go. There were no signs indicating I was in the right place and when I asked a staff person, I was spoken to in a sharp tone. You could tell that she was stressed. I was told to take a seat.

After waiting well past my appointment time, I had my visit with Dr. B. I am going to start by saying that when I meet a new doctor, I go into that visit with a smile on my face and a positive attitude. I feel that it is important in building a rapport with someone. My positive attitude quickly took a turn as I found myself in a head to head argument with Dr. B. several minutes into the visit. He was asking me my medical history and I told him I had my adenoids removed when I was a toddler. He then reiterated to me that I had my tonsils and adenoids removed. I corrected him and said no, just the adenoids were removed and the argument followed. As a pediatric nurse, I know that typically tonsils and adenoids are removed at the same time these days but for whatever reason, only my adenoids were removed back in 1974. He told me that wasn’t possible. I asked him if he wanted to look in my throat. He declined. Remember, this is a urologist, not an ear, nose, and throat doctor.

The visit went downhill from there. He wanted to do another ultrasound as the one from a few months ago was suspicious for urinary retention. He didn’t seem to hear me when I told him that the nephrologist thought that the urinary retention was from a medicine I was on at the time and no longer took. He mentioned the possibilities of Parkinson’s or some other type of neurological disorder. I wasn’t against this testing but I brought up the possibility of interstitial cystitis related to Sjögren’s. I was again dismissed in a condescending tone and told that interstitial cystitis itself is rare, I don’t fit the profile, and Sjögren’s doesn’t cause bladder complications. I have come to find out that cystitis can affect anywhere from 10-30% of people with Sjögren’s. He never did a physical exam of any kind.The visit ended with him asking me why I was on Medicare. I’m not sure why that mattered but I told him I was disabled from Sjögren’s. His response indicted to me that he did not think that having Sjögren’s was a good reason to be disabled.

I sat in the waiting room in disbelief. First, I could not believe that a doctor actually got away with talking to people like that. And second, I was shocked at myself for not just getting up and leaving during the visit. Then I tried to think about my own behavior and interaction to see if part of this was my responsibility. It took me all of five minutes to realize that my behavior was extremely appropriate but it was also assertive and I knew what I was talking about. I think that may have upset this doctor. As I got my test dates and then drove home, I thought about what to do. I was very upset. I knew I was starting to get worse but I could not see myself going back to this doctor for any reason. If I started all over with a new doctor, there could be no telling how sick I might get while trying to find a new doctor and then waiting for an appointment.

I felt vulnerable. This doctor’s appointment left me feeling helpless and inferior when I left the office. I am a well educated, professional nurse who has more knowledge of Sjögren’s syndrome than probably most physicians in this country and yet I now questioned myself because someone had the initials M.D. after their name. I also knew that I desperately needed his help. It wasn’t only that he didn’t recognize or have the knowledge about my autoimmune illness, it was about the fact that he just did not care. He let his pride stand in the way of hearing me when I tried to tell him the information I read from the Sjögren’s Syndrome Foundation about bladder issues. I didn’t know for sure if that was the issue, but I did expect to have a reasonable conversation about it. I expected to be treated as a partner in my own health care. I expected to be treated with respect.

So what did I do? Within several hours of getting home, I decided that there was no way I could work with this doctor. I cancelled my tests and I started the process of finding another urologist which took me a very short period of time. Within three days, I had an appointment set up with a urologist at Lahey Clinic in the Boston area. Two hours from home. I made the decision to go there for several reasons; the biggest one being that they are nationally recognized for their urology program. Two more weeks I would have to wait.

Things did go from bad to worse for me in regards to my bladder issues. In those two weeks, I ended up in the emergency room with some of the worse pain I have had in my life; and that is saying a lot! But it was worth it. And I will explain why.

From the moment, and I literally mean moment, I stepped into Lahey Clinic, I was treated with the utmost respect. People would stop me in the hall (guess I was looking a little confused) and asked if they could help me get to my location. When I walked into the Urology Institute, I felt like I had stepped onto another planet. They were organized and on time. Before I saw the doctor the first time, I met with a nurse who did a urine test and a scan of my bladder afterwards to make sure I was not retaining any urine. She explained to me the entire process of what my visit would be like. She handed me two forms to fill out and guess what the first form was? An interstitial cystitis questionnaire. It was obvious to me that someone had bothered to look at the medical records I had sent over. It was obvious to me that my doctor had a clue about autoimmune issues.

The doctor I met with truly listened to me and we came up with a plan together. He told me he suspected that I had interstitial cystitis (IC) . Within a few days of my visit, I went downhill even further and talked to an on-call doctor on a Saturday who helped me figure out a medication plan to get me through the weekend.  When I called the office back on Tuesday, a receptionist listened to me explain my situation and got me an appointment for the next day with one of the nurse practitioners. Again I was listened to, we explored all the options, and it was decided that my procedure/OR date should be moved up. My appointment was a Wednesday and I was scheduled for the OR on Monday for a cystoscopy with hydrodistension to evaluate and treat for possible IC. While I was at the hospital for this appointment, they had me do my preoperative registration and blood work that same day since I lived so far away. Most importantly, I was treated with respect. That is excellent medical care.

So what is my point in telling you this huge and drawn out story? Well, we all must decide for ourselves what we are willing to put up with and what we are not. We must also weigh the risks and benefits of every medical situation. That being said, it is NEVER acceptable to be treated by a medical professional in a way that is demeaning, rude, or uncomfortable. It doesn’t matter what your medical issue is and it doesn’t matter how much pain you are in. It doesn’t matter if the doctor does not like you and it doesn’t matter if he is having a bad day. Doctors have bad days just like the rest of us however they are also professionals. And you are the patient. Just being a patient makes you vulnerable when you step across their threshold. I am not saying to dismiss someone because they disagree with you (I have certainly had my share of disagreements with doctors) but you should never feel disrespected and you should certainly never leave an office in tears because of a medical professional. You deserve better. We all do.

We often hear and see online and in the media about healthy relationships versus dysfunctional ones. We hear about abusive spouses and toxic friends. We learn about what is acceptable behavior and what is not. We teach our children about bullying. But what about the very people who sometimes literally hold our lives and well being in their hands? Shouldn’t they be held to the same standards? Í am not saying that all doctors are rude, inappropriate, or bullies. I, in fact, have seven who are none of those things and are some of the best doctors out there. So if you encounter a situation like this, know that there are not alone, know that you deserve better, and don’t quit until you get what you need.

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I know that I am fortunate. My experiences took place in a state where the eastern side of the state, two hours away from me, is riddled with some of the top hospitals and doctors in the country. I have never lived anywhere else besides western Massachusetts but I do understand that access to better care may not be as easy for some of you as it was for me. I would be interested in hearing your thoughts and stories regarding that or in regards to anything discussed in this essay.

The Great Coumadin Debate

November 30, 2012 / / 4 Comments

In 2004 I experienced sudden pain in my lower left leg. It was an unusual pain. I didn’t remember banging it against anything and I certainly hadn’t been active doing any type of exercise or sports recently. For a variety of reasons, depression had been my constant companion and I had been spending a lot of time laying around. That would soon come back to haunt me.

After a few days, the leg pain got worse and I went to see my primary care doctor. He wasn’t much of an alarmist but he thought it was worth having an ultrasound done on the “off chance” that I had a blood clot in my leg. To be honest, I thought it was overkill but then my thoughts turned to panic when the radiology department told me I could not leave the hospital yet and then called my doctor. My ultrasound showed that I did indeed have a blood clot and would have to go on injections of a blood thinning medication called Lovenox, followed by the oral blood thinner Coumadin, for a period of three months. Since I was a nurse, they sent me home from the emergency room with a prescription as I could do the injections myself which by the way, is easier said than done.

My primary care doctor was suspicious about my blood clot because even though I took the birth control pill, I was a non-smoker. He ran a series of blood tests to check for genetic blood clotting disorders and sure enough, one of them came back positive. I have a genetic clotting disorder called Factor V Leiden and I am heterozygous which means that I only have one copy of the gene. My mother subsequently got tested for Factor V Leiden and was found to be positive as well.

Because I am heterozygous (which is less serious) and was on birth control at the time which probably caused the clot, I remained on Coumadin for only three months. I came off the pill and was banned from hormonal birth control for life. I thought that was the end of it. For those of you who are unfamiliar with Coumadin, it is a difficult drug to be on. It requires frequent lab draws while they stabilize your dose and then usually you have monthly blood draws after that. Coumadin interacts with a lot of other prescription and non-prescription medications including anti-inflammatory medications such as Motrin and Advil. Also because there is such a low threshold for the therapeutic blood level, called the INR, you need to be vigilant about signs of having too high of a level, which can lead to bleeding. There are dietary issues that play a big role in taking Coumadin as levels of Vitamin K, which is found in foods such as green leafy vegetables, can dramatically throw levels off.

Fast forward to February 2012. I am receiving high doses of IV steroids for what was thought to possibly be neurological complications from Sjogren’s syndrome but ended up being a mild case of another autoimmune illness called Guillain-Barre. For weeks, I had been experiencing severe leg pain and weakness which for a lot of the time, kept me in bed or on the couch. It never occurred to me or to my doctors that maybe I should go on blood thinners preventatively due to my Factor V history and current immobility.

Twenty-four hours after the third IV dose, I am sent to the emergency room with heart palpitations, thought to be related to the steroids, so that an EKG can be done. Labs are drawn and one of the labs, the d-dimer test, comes back suspicious and because of my Factor V Leiden history, a CT scan of my lungs is performed. Next thing I know I am admitted and told that two small blood clots have been found in my lungs and I am put back on blood thinner injections once again. Another trip to the hematologist and I am now put on Coumadin for at least a year and most likely for the rest of my life as I have now had two clotting events. I am also tested for other autoimmune clotting disorders which all come back negative. The hematologist admits that he is taking a very conservative approach.

Months go by and I learn more about these two blood clots that were found in my lungs from several different doctors. I find out that they were very small and located in peripheral veins and likely were an incidental finding; meaning that if I had not come into the ER that day, these clots never would have been detected, caused me any problems and would have resolved on their own. However it did not seem that NOT being on Coumadin was even an option according to my doctors. At least that was the impression that I got.

It took us approximately five months to get my INR to a therapeutic level and I was becoming frustrated with being on Coumadin because things were much different with my overall health than my first time around with the medication in 2004. I now had a very difficult to treat autoimmune disorder. I had to stop taking Motrin with helped significantly with my joint and other autoimmune related pain. I had to significantly decrease my intake of Omega 3 fish oils which I not only took for inflammation but was my treatment of choice to help manage mood swings related to taking prednisone. I constantly had to be cautious about my diet because I had started eating healthier and green leafy vegetables were a part of that diet. I had to be strict about making sure I ate the same amount of greens on a consistent basis. I was also restricted on trying alternative medication and herbs to treat my autoimmune disorder because of their potential interaction with Coumadin. To me, it seemed ridiculous that I was taking potent medications like prednisone and narcotics without having the opportunity to try an alternative treatment plan because of Coumadin.

Now I know some of you may be sitting back and thinking that well, you have to do what you have to do, right? Better than the risk dying, right? Because that’s what can happen if one of these blood clots gets out of control. But that’s the thing. These two events were not random events. They could, in my mind, most likely have been prevented. So I started doing a lot of research because at this point, it was starting to become a quality of life issue. It’s easy for a doctor to say: stay on Coumadin for the rest of your life. But at forty-one years old, the rest of your life, is a long life. It is a risk. What I found in my research was that having two blood clotting events is not always a definite for going on lifelong Coumadin therapy. There are people out there who chose not to. Instead, there is the option to stay off Coumadin and then if they find themselves in a high risk situation such as a long plane ride, a hospitalization, or any other situation where they are at high risk to develop a clot, they go on Lovenox injections preventatively.

 I am willing to do that.

I decided to call my hematologist and discuss this with him since my next appointment wasn’t until April and coincidentally I was admitted to the hospital the same day he called me back and could not speak with him. He told my fiance to have me call him back that Friday. I was having gastrointestinal issue related to Sjogren’s and because I had not been eating, my INR was too high. My Coumadin was held for the next four days and at one point, the doctors even considered holding off on doing an endoscopy, a procedure which I very much needed, because of the elevated blood level. I was pretty much done with the whole Coumadin saga at this point.

The day before I was discharged from the hospital, which happened to be Friday, my blood levels stabilized and the hospital doctor wanted to start me back on Coumadin. I also remembered that this was the day that the hematologist was going to be available to talk to me. I called him. I have to admit, I was pretty nervous. I was certain that I was going to get lectured for even considering wanting to come off this medication and as strong as I was in my convictions about this being the right decision for me at this time, I wanted to have a rational and well thought out conversation with the hematologist about the issue.

And I did.

I told him my perspective and he told me his. It ended up that they were really not that different at all. Typically when someone with a genetic clotting disorder has two separate clotting events, the recommendation is that they go on Coumadin for life. But that is a recommendation. It doesn’t mean that all people do it. As far as I know, it also doesn’t account for anyone with heterozygous Factor V Leiden who had one incident on birth control, one incident with Guillain-Barre, and who also has a difficult to manage autoimmune disorder that could really benefit from other treatment that interacts with Coumadin. Because let’s be honest: that’s all just unheard of. Nobody gets all of those disorders in one lifetime. Only I do.

He did acknowledge that he was coming from a very conservative treatment standpoint and as a patient, I have to respect that. As a doctor, he seemed to respect where I was coming from. I even said to him “Do you think I am insane for wanting to do this?” to which his reply was ” Absolutely not.” It was not a conversation in which the doctor told the patient what to do.  I made it clear that my wanting to come off Coumadin was not an impulsive decision but rather a very well thought out one. At this point I had been taking Coumadin for nine months since my last clotting event.

The decision was made that I would stay off the Coumadin and follow up with him at my April appointment. I also agreed that I would be proactive about blood clot prevention. This means that if I am in a high risk situation, I will go on short term Lovenox injections. I will take care to wear special antiembolic stockings if I am not moving around as much as usual and I will not stay sitting or in bed for more than an hour or two without getting up and walking around; except for typical sleeping time or naps. It is going to require effort and diligence because nobody else is going to do it for me, as evidenced by what happened last February. I cannot rely on a pill to keep my blood from clotting anymore.

Now this is all well and good. Fact is, I may get another blood clot anyways. I am well aware of that and to be honest, it scares me a bit right now. But it scares me more to be on Coumadin and recently  be told several times that my levels were high, unpredictable and then have to worry about bleeding. It’s a risk no matter which way I go and right now, I feel that the risk I am taking by staying off the Coumadin, coupled with the significant increase in the quality of life it will give me, is worth it.

This whole experience has opened my eyes to a few things. As a patient, I have choices. Medicine is not black or white. There is a lot of grey. A doctor can make recommendations, even strong ones, but at the end of the day, I am the one who has to live with the consequences of the health care decisions that I make. It doesn’t mean I will always make the right decisions but who is to say that our doctors do either? They are human too. They have the education and expertise to give us the information, but we are the ones that then have to ultimately live with the consequences of the medical treatment that we decide on. Our bodies. Our lives.









































Photo: Courtesy of Google Images

Top 10 Ways To Get Out Of The Hospital Alive

July 22, 2010 / / 0 Comments

“A hospital is no place to be sick.” ~ Samuel Goldwyn

Anyone who has spent any amount of time in a hospital is aware of how difficult it is to be in one. Between being sick, emotional stress, lack of sleep, a million people in and out of your room, overworked nurses, fresh right out of medical school residents, etc., it can be nothing short of a nightmare. I have had the distinct pleasure of being hospitalized four times in the past year and a half and I think I have learned a few things along the way that may be worthy of passing on. Hopefully you will never need to know them but just in case, here we go:
1. Always carry a list of your medications on you either in your purse or your wallet. This is especially important if you take multiple medications. I know, you are going to sit back and say “well I only take one or two, I know them by heart.” Trust me, when they are hooking you up to all kind of machines and sticking needles in you left and right; it is hard enough to even remember who you are, never mind your medications.
2. Ask your nurse to tell you every medication she gives you and what the dosage is. Everyone makes mistakes and I have to tell you, I have caught some whopper mistakes. Personally, I think the hospitals with the best nurses will bring the medications to you still in the package and open them in front of you while telling you what each one is.
3. Make sure the doctor in charge of your care orders ALL of your medications, not just the prescription ones. This may mean you have to bring/use your own stash. Sometimes pharmacies may not carry a certain prescription medication and forget about getting something non-prescription most of the time. I was in a situation where a doctor said I would be OK not taking a prescription eye drop for a few days that the hospital did not carry. I am sure my eye doctor would have thought differently. So what did I do? I had the eye drops in my purse. I told the nurse I was using them (this is VERY important) and I used them. No need to make one medical problem worse while you are trying to fix another, right?
4. Write everything down if you are able to. If you are too sick, ask your doctor/nurse to write down anything important they just told you. You are much too stressed, too sick, and too exhausted to be expected to remember anything that is told to you.
5. You will not sleep in the hospital unless you are doped up on so many drugs that you have no choice. For the average person though, this is not the case. Ask for sleeping medication to be ordered for you. Sleeping medication is usually ordered on an as needed basis, so you get to decide if you need it later or not. The best time to ask for this is when the doctor comes in to do your initial evaluation when you are admitted. If your forget, ask your nurse as soon as you remember. It is a lot easier to get a doctor’s order while they are around rather than at 2am when you just want to cry because you are exhausted and can’t sleep.
6. Speaking of sleep, try to get it when you can. This may mean shutting off your phone, asking visitors not to come, etc. Anyone who knows anything about good sleep hygiene will tell you don’t nap during the day as you won’t sleep at night. I say to hell with that, this is the hospital. People are going to wake you up at 4am to take your blood pressure even though it has been normal your entire life and you are sleeping for the first time in two days. Nap when you can, even if it is 4pm. You will be grateful later that you did.
7. If you are not a frequent flyer to the hospital or something really critical is going on, try to have someone with you during the day and not just anyone. Don’t automatically think the person closest to you in your everyday life is the best choice. Try to pick someone who can handle you at your worse, can stay calm when it all hits the fan, and will advocate for you. The last thing you need is someone hovering over you every minute saying “oh my god, oh my god.” Have them take the notes if necessary and be direct with them about when you need to rest, sleep, or need them to smuggle in a stiff drink (OK, just kidding on that one).
8. Make nice with your nurse. He/she is your biggest ally (besides yourself) and your best chance for getting through the whole experience. If you can summon up the energy, try to establish a rapport with your nurse. Also, ask them if they can try to be your nurse the next time they are working (if you can stand them). A lot of hospitals try to do this but it can oftentimes get overlooked. There is something to be said for a nurse who already knows you and it allows for better continuity of care.
9. Know who is who and if you don’t, ask them. They should also be checking your bracelet (that is why you have one!) and/or asking your name before they do anything to you such as give medications, draw blood, bring you for tests, etc.
10. This is the most important. When you know you are right or something does not feel right, speak up. And keep speaking up until the issue is resolved. There is a hierarchy in hospitals and it depends on whether it is a teaching hospital or not as to what the hierarchy is; but there is one. If it is a nursing care issue, start with your nurse and work up from there; everyone has a boss. In terms of the medical plan, speak with the doctor in charge of your care and if you are not getting the care or answers you need, ask to speak with their boss (usually a more senior resident or an attending physician).

I was once admitted from an emergency room. My pulmonologist (doctor who specializes in respiratory issues) made it clear to me what the plan would be overnight but the resident working on the floor did not follow the plan and this included breathing treatments and an increase in a medication. I was still having some difficulty breathing. I spoke with my nurse four times during the night who in turn called the doctor. He did not change anything and was too busy to come talk to me. By 6am, I told the nurse I was calling a family member to come pick me up ASAP (and I was serious-I would go to another hospital if I had to). Boy, did that doctor come to see me fast! I got a lecture about leaving a hospital AMA (against medical advice). I gave him a lecture about medical negligence. My pulmonologist was called at 6:30am on a Saturday. He agreed with me that the medical plan was not implemented. By this point, I had lost all trust in the people taking care of me and strongly felt that even if the plan was implemented now, that it was not a safe place for me to be. He agreed to discharge me with the medical plan we had initially discussed. The understanding was I would get back to the hospital if I needed to and I would stay with a family member. The pulmonologist agreed to see me in his office first thing Monday morning. Ultimately, I ended up making it through the weekend staying with family because I was implementing the medical plan my pulmonologist and I had put in place.

Now, I am not advocating to threaten to leave the hospital anytime you think something is not going right. This was a pretty unusual situation. Hospitals are very chaotic though; information does not get communicated and mistakes are made. However I think it goes to show that as a patient, you are the one ultimately responsible for your body and your medical care so listen, observe and most importantly, speak up!

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