The Blame Game

Medicine today is much different than it once was. It used to be that you had one doctor, a general practitioner. They handled all aspects of your care. When you got sick they admitted you to the hospital, and they saw you while you were in the hospital. If they really got stumped and in over their head, only then, they would refer you to a specialist. They did not farm you out at the easiest possible second. They took care of you themselves. Often whole families from grandparents all the way down to grandchildren, all saw the same doctor. The doctor was in many ways, part of the family. This is no longer true. The only type of doctor this still applies to is a pediatrician. The only way you see your doctor while in the hospital is if that doctor is a specialist and he has privileges at that hospital. For the most part, however, you do not see your doctor. Decisions about your care are made by hospitalists. They do not know you or your medical history. If you're lucky, they will have read your chart, but most of the time, they haven't even done this. You will probably have several different hospitalists throughout your stay. You may get one that lasts for a week and then changes. You may have one during the week days and a different one on the weekends. Depending on the hospital, you may even have a different one nearly every day. If you're in a teaching hospital, you most likely will have a team of doctors. The residents will be the ones who actually evaluate you; then they present your case to the attending. You may not know who your doctor is, seeing so many different faces throughout the day, not knowing who is who.

One of the problems with medicine today is a lessefair mentality. No one wants to take responsibility. If you're a complex patient with many different medical problems, as I am, you have a slew of doctors, each with their own specialty. Often I feel as if I am in the middle of a circle of doctors. I begin spinning around and around, faster and faster, looking toward the circle of doctors that seems to be getting larger and larger as I rotate going faster and faster. I become more and more confused not knowing who to turn to or where to go. Everyone has the "not me" attitude. No one wants to take ownership. No one wants to do the work. Instead, they pawn it off to someone else in a different specialty. You have problems with bleeding - not my job says the immunologist, and he pawns you off to the hematologist. It might be related to a mitochondrial disorder - not my job, see a neuromuscular doctor. It could be alpha-1-antitrypsin deficiency - not me, talk to the pulmonologist. They only do what they absolutely have to, no more. Anything they can pawn off to anyone else, they do. Not my job, they all say

This, however, means that you, the patient, have to be your entire medical team. You are the patient. Yet you also need to be the doctor, knowing what tests to run, what possible diagnosis it is or could be, what effects it has, and what treatment is given. You are the the nurse, taking the blood sample, sputum culture, urine analysis, and getting it evaluated properly. You must call and get the results because you know that the doctor will never call you back on his own. You'll be lost in a slew of reports. Then you have to prescribe the proper treatment because he/she will forget they even put you on treatment. You will be a one-man show. And you must do this all while you are sick. You do not feel well; you are weak and tired. Once you have played doctor, patient, nurse, and lab tech, you also must play insurance company to make sure all the test and procedures are billed correctly, have proper pre-authorization, and get paid for.

I think one of the most frustrating parts of this system is not only do you need a gazillion different specialist because each doctor says it's not my job and just pawns you off to the next person, none of these specialists communicate or work together. They are all cowboys, shooting off from the hip. In today's day and age, there is no excuse for this. We no longer need to wait for the Pony Express, nor do we need to send a telegram or use Morse code. In fact, we don't even have to write a letter, put a stamp on it, and wait for it to arrive in the mail. We can pick up the phone and call the person. Through the use of cell phones they can even be reached day or night, and in just about any location. But even better than this, we can send out an email, that will reach them nearly instantly, and they can reply just as quickly. They don't even have to be at their computer to get it or respond. They can do this from their phone. Yet, many times they can't be bothered. They don't communicate with your other providers. It is becomes up to you to enforce communication and keep everyone up-to-date. Just one more daunting task for you to do so that you get adequate health care when you're sick. It's all extremely frustrating.

Sometimes, one just has to wonder; it shouldn't have to be this difficult. I went to go see Dr. S, my immunologist/hematologist. I haven't seen him since before the trach. Though I didn't call him to specifically notify him that I got a trach, he knew. He had to because the doctors called him to get orders for my Igg. In rehab, I went up to Baystate to get my Igg and he wrote the orders ect. I knew I was going to see him soon, and didn't see the point in calling him just to tell him I had a trach put in. What would be the point? Some asked if I contacted him before getting the trach to ask his opinion. Well no. What was he going to say? It wasn't up to him and really there were no other options. It wasn't an elective procedure. Whether he supported it or not, I needed to have it if I wanted to continue to live. From an infection standpoint, it was a risk. But again, there weren't a whole lot of options. Whether he supported it or not didn't matter. Anyways, I often feel appointments with him are rather pointless. I long ago ceased being a run-of-the-mill patient. I am not your typical patient with CVID. Most patients with CVID start Igg treatments and with these treatment, they are able to live fairly normal lives. Their infections are pretty well managed. Unfortunately, I am a complex patient. Just traditional Igg treatment hasn't been effective. It has improved things. It has kept me alive. I am not constantly in the hospital, or at least I wasn't after I had been diagnosed and started Igg treatment, but I still got frequent infections and was in the hospital a lot. The frequency of infections and hospitalizations have increased, despite an increase in dose. I am currently on quite a significant amount of Igg. I receive 20 grams weekly, a total of 80 grams a month. Most people are on ~40 grams a month. One of the frustrating things is for many patients with immune deficiencies, their immunologist is at the center of their care, directing other aspects of their care and guiding other specialists such as pulmonogy and primary care doctors. They direct all aspects of their care and how it relates to a primary immune disorder. This is important because PIDD effects every organ system. But Dr. S has always had a fairly hands off approach. When it came to pain and CVID, his opinion was that's not my specialty and told me to see someone else, but it is part of the immune deficiency and thus he should've at least referred me to a doctor. Even if he referred me to a pain specialist, he should've been an active participant, consulting with the pain specialist, since my pain was directly related to my immune disorder, not due to some sort of pain syndrome. When it came to my periods and how they were making my CVID worse, it was - I don't know anything about that. I'm not saying he's a bad doctor, but he isn't a free thinker. I was the one to bring journal articles to him. He went with whatever my doctor suggested. I didn't expect this visit to be different. I did want to discuss with him the ideas of Pompe, or a mitochondrial disorder. I wanted to get tested for possibly an Alpha-1-antitrypsin deficiency. Most importantly, was the source of the bleeding issues. That I had such severe bleeding and that it had taken over 2 hours to stop the bleeding was a concern. This visit was especially frustrating because though I was there for over an hour; he was only in the room with me maybe a total of 10 minutes.

Sometimes people make the dumbest comments. You can't help but wonder what were they thinking. Better yet, were they thinking... Probably not. On coming in the room, he asks, "So I see you've got a trach." Powers of astute observation. Yes, it would appear so. "Well how's it working for you?" Just dandy; it's great. Think everyone should get one. Don't have anything better to do with your time? Get a trach. Life certainly won't be boring afterwords. Certainly wasn't how I planned to spend my summer, that's for sure. In fact, I can think of just about a million other things that I would rather do than get a trach. I mean, one good thing, I'm still alive. But definitely poses some challenges. I told him about the bleeding and after much convincing, he agreed to run the test for von Willibrans. Everything else - not my specialty; see someone else for that. This is what I mean. Everyone wants to put it on another doctor, any other doctor really. They just don't want to deal with it themselves. Doctors are not the only ones that fall victim to this. Nearly everyone wants to get away with doing as little work as possible. If they can make it someone else's responsibility so that they don't have to do the work, they will.

I went to see Dr. O this week. I had the appointment from before I had the trach. It worked out well though, because I was able to see the doctor with having this infection. Last Thursday I was put on IV Rocephin. First of all, by Monday, I still had not seen any results. In fact, I was still getting sicker. I was more short of breath. My trach was still disgusting, didn't look or smell any better. More than that, the Rocephin made me horrifically itchy. No matter what I did, I felt like I wanted to itch my skin off. Oral Benedryl had no effect. I tried taking a dose of Benedryl before my dose of Rocephin. I slowed down the push from 5 minutes to 10 minutes. Other treatments such as a shower, lotion, even Atarax didn't help. The only thing effective - IV Benedryl. When I brought it up, Dr. O refused to write a script for it. He stated that I would have to call Dr. S and get him to write for the Benedryl. This made no sense to me. The allergic reaction was not due to my immune disorder. It was not related to the IVIg. No doctor is going to write a prescription for a medication to counteract or treat the side effects to a medication they did not prescribe. That would be insane. No doctor would do that. The doctor that had written the prescription for the medication was responsible for any side effect that occurred as a result of the medication. Again, an example of doctors not wanting to take responsibility. Finally, I told him, he had two choice - he could either prescribe a medication to treat the side effect, I had already tried every non prescription method I knew of, or he could change the medication. I could not continue to be in live in such a manner; to do so would cause me to go insane - literally. He decided to stop the Rocephin and switch to IV Doxycyline.

It is so frustrating to have to fight for every little thing. I am sick. I don't feel well. Yet I have to be the patient, the doctor, the nurse, the pharmacist, ect. It's as if it's a one-man show, featuring me. When you are sick, you are tired and weak. You don't feel well. This is not the time that you want such a fight. Being sick is hard enough. But there are no other options. The thing about Rocephin is that I never should've been put on it. It is contraindicated in people allergic to penicillin. Well I am allergic to penicillin. Something that should've been considered, but they don't read the chart or take these things into consideration. The only way they know what drugs to try is by looking it up on PubMed, or in the PDR (physician drug reference), a book with every medication, the diseases they treat, and interactions with other medications. Honestly, it's pathetic and infuriating. The other thing is that I saw him at 2:00, was out of there before 3:00; plenty of time to fax the script to Professional Home Care, the company that manages my IV medications, so I could have my antibiotic when I got home. I called Professional to let them know to expect a fax from the doctor. they had not yet received anything and said they would have to get something by 5 to be able to get the med to me that day. I called the doctor back. The script wasn't faxed until 4:45. They hadn't included the form stating I'd had the med before, and by the time they were able to contact me, it was after 5, at which point the office was closed, and I couldn't get the antibiotic until the next day. Again, you shouldn't have to do all the work. Doctors should communicate amongst themselves without you doing it for them. They should take responsibility and treat you themselves without trying to put it on someone else. Yet somehow they have removed the patient from patient care. How I would love to go back to a time when doctors cared about their patients, when they'd did whatever they had to do to provide good patient care. They had a vested interest in their patients and general practitioners did it all. Unfortunately, those days are gone.