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.

Things are Never Easy

I was discharged from the hospital a week after having the trach placed. So I was discharged on last Thursday. Since then, life has been a collasal horrible disaster. They basically discharged me without any proper discharge plan. They were supposed to downsize the trach to a 6 so that I could use the passy meir valve and talk. Remember this was supposed to make the quality of my life better. Well, the surgeon decided that the trach was too new and he did not want to downsize the trach for another week. Well we will skip ahead in time to today when we called and guess what.... the doctor is on vacation this week. So is my trach going to be downsized so that I can use the passy meir valve this week? That would be a giant no because the doctor is on vacation. Can I scream? Oh wait, I have no voice! I can't even do that. And while I was told that this was a simple office procedure, guess what I find out. It is day surgery at the very least. They will bring me in, change the trach and it may be a few hours or I may need to stay over. Let's count on me needing to stay over because that is how my life is. And honestly I just want to be sure I can use the passy meir valve and talk. Because this not being able to communicate sucks and is just not fair. Just sayin'

So back to the story. The company that previously handled all my o2 needs does not do trach care or anything with trachs. Ok, understandable. Trachs take special consideration and are more complicated than plain just o2 needs. So one would think before being discharged from the hospital they would set me up with the o2 needs and humidification that I need with a trach. Also, one would think they would provide me with what I need for trach care. For those who don't know about trachs, they obviously have to be cleaned and taken care of. Well, none of this was taken care of. I was sent home without any humidification for my o2. This caused me to get very dry and that caused other problems. Also, I was sent home with 2 trach cleaning care kits when discharged. Since PromptCare, my previous o2 company could not provide my needs, it was set up that Apria would take over. Well Apria never got the proper authorization, scripts with specific o2 needs, ect. and so they never set things up. Anyway.... VNA came out Friday and were appalled that I basically had nothing - o2 wasn't set up and had no trach care kits. It was also determined that I should've been sent to rehab not directly home since I have not learned how to live with a trach, nor care for myself with a trach, and after having the trach put in, I'm sufficiently weak and really can't do much. So, yes, I need rehab. We were told to go back to the hospital and they would admit me and arrange for rehab. Well I never actually made it into the ER. I sat in the waiting room for several hours while the charge nurse made some phone calls and tried to arrange for the o2 needs with Apria. We all know that it is near impossible to be admitted for rehab on a Friday afternoon at 2pm. So we were assured that Apria was going to come and by 7pm when they hadn't, we were back on the phone trying to get the humidification I needed to get through the weekend, since nothing was going to be done until Monday. In the end, we went to the ER and picked up some humidification bottles to attach to the liquid tanks. We rolled one liquid tank into my room and attached the humidification bottle attached to the trach mask. This gives me the ability to move about a foot and a half. Basically I'm stuck in my room. So much for making my life more mobile.

On to Saturday. The VNA nurse comes again. At this point I have used all the trach care kits given to me because my trach keeps getting clogged with huge blood clots that require me to take the trach tube out and clean it because I can't breath through these clots. The nurse calls the dr that put it in (yes the doctor that is currently on vacation) and he says to go to the ER. So off to the ER we go. Also decide to mention to the ER that despite 80mg of lasix my feet are so swollen with severe edema that I can't walk and nothing fits on my feet. Oh, but does the ER want to do anything? nope. They give us a few more supplies and tell us that after talking to Dr. Constantino (the dr that sent us to the ER) that coughing up blood is normal for a new trach. (then whey did he send us to the ER?) They did do a chest xray and that is all fine. So we left with one more trach kit, some ampules of saline to squirt in my trach, and a few more supplies  to get through the weekend. Apria still has not come with o2 or supplies.

So we get through Sunday. I sleep and watch tv because there isn't much else I can do. It is now Monday. We try to get me into rehab. The VNA and my pcp are trying to work together. There is a rehab facility in town that does pulmonary rehab that would be perfect. Guess what? Medicaid won't cover skilled nursing care. haha. Life is such a collasal joke. I can't get into rehab because it isn't covered by insurance. Did I mention that Apria still hasn't come. The pulmonologist is supposed to be signing and faxing over orders so they can deliver what I need, but yet it still hasn't been done. We have been making phone calls all day. My pcp's suggestion was to go back to the ER, to which we siad no because they aren't even going to treat me but rather they will just send me home again, so what is the point of sitting there for hours. Now it is 4 o'clock and despite countless calls made by my mom and VNA since I have no voice, still no change. VNA is trying to get the pulmo to direct admit me and finally do the job they should've done originally. Yes, some of my doctors suck. Some of them are great and are trying their best to move mountains and get things done. My VNA nurse is an angel and really couldn't do more than she is.

Hospital Update

Well, I am home from the hospital. I was discharged on Wednesday. Unfortunately, I wasn't discharged in time to make it to go to Boston. I was able to reschedule my appointment for September 22nd (2 weeks from my original appointment). I have been extremely impressed with the people in his office. Not only are they accommodating, but they actually call you back. They put me on a cancellation list, and should anything come up sooner, they will call me. At this point in time, I just want answers. I am so tired of being sick and in the hospital constantly. I DESERVE to have a life, and I can't do that when I'm in the hospital constantly.

Anyway, sorry, back to my hospital update. I was discharged on Wednesday. I can't say I was truly ready to be discharged, but the doctor wanted to discharged me, so discharged I was. See, the way it works is that my doctor rounds in the hospital on the weekend or holidays. During the week another doctor rounds. This doctor doesn't actually see patients. Strange, I know.

Tuesday they tried to allow me to eat. That didn't go so well. Caused a lot of pain and extreme nausea, but I stuck through it. I guess my CT scan showed what looked like a small ovarian cyst. I was sent down for an ultrasound. The GYN that did the ultrasound was amazing. She said that she did not think that it was a cyst, but rather a natural occurrence. It is less than 1 cm, so she said there is no way that something that small is causing my upper quadrant abdominal pain. She did not see evidence of any fluid indicating something had burst or was infected. So good news there.

Dr. S (the doctor that doesn't see patients) came in on Wednesday and was adamant that my pain was being caused by my non-existent (only a few millimeter) cyst. Apparently he knows more than the GYN, in which this is her specialty. She at least sees patients. Then he went on to tell me that women get cysts nearly every month. Okay, that is true in some cases. That these cysts can cause fever and increase WBC. Well, if they get infected, yes. And they are mildly uncomfortable and treated with Tylenol and Advil. Whoa there! I know people who have had ovarian cysts and they can be EXTREMELY painful. He then went on to tell me all about what it was like to be a woman and have a menstrual cycle - because his last menstrual cycle was when?

He then wanted to discharge me without finishing the course of antibiotics. All through the hospital stay, I'd been on IV Cipro. My lungs had mildly improved from when I was admitted, but I was still fairly wheezy and junky. I was able to talk him into prescribing enough oral antibiotics to get me through Saturday, which would be 7 days of antibiotics. I tried to impress upon him that whether or not the exact infection causing my problems was identified didn't matter, but that stopping any course of antibiotics mid-cycle is dangerous and how antibiotic-resistance develops.

This doctor obviously does not understand PIDD. I often think doctors should actually read a patient's chart before going in to see them. I also think that if that patient has a diagnosis that a doctor does not understand or is not knowledgeable about, that he/she should educate him/herself on this disease. Everyone has access to the internet, so there really are no excuses. I often wonder if all doctors acted as med students with the need to impress their attending, if perhaps patients would get better care. I wonder if some doctors just become lazy over the years. I have ceased expecting doctors to do this, but I get so tired of playing both doctor and patient. I do not mind educating people, but it's hard when you feel like you're talking to a brick wall. Well maybe talking to the brick wall would have more of an effect and it would be more responsive.

So, I am home. My lungs are not doing so well. The small improvement I felt in the hospital is slowly being lost. I don't know if the oral antibiotics are just ineffective or what? Maybe my body is not absorbing them properly? It seems that every time I take oral antibiotics, they do nothing. I do not know why this is. I also have horrible thrush. I've tried OTC products, with no luck. My doctor hasn't prescribed anything. It's down my throat and possibly in my stomach. Is this possible? Would that be why I feel so sick?

Again, more questions asked than answered. Feeling a bit discouraged. One and a half weeks until Boston.

"I think I can. I think I can. I think I can." - The Little Engine that Could

Hospital

While there is never exactly a "convenient" time to get sick, as no one ever wants to be sick, but I often seem to get sick at the most inopportune moments. When the last thing I want to do, or can afford to do is get sick, when it's actually extremely important that I stay healthy, that is most often when I do exactly that. During these times, I try to will my body to stay healthy. It's as if I try to bargain with it - just stay healthy until... Unfortunately, my body rarely listens.

Tomorrow, I was supposed to go up to Boston for a consult at Boston Children's hospital. So of course, last week, my lungs decide to get crappy. I could feel the mucous building up and getting congested. I got to be so tired and worn out doing simple things, gasping with every breath I took. Instead of decreasing the prednisone, I stayed at 40mg. I needed my body to make it. On Thursday night, I began running a fever. Now I never run  a fever, so when I do, something is seriously wrong. Friday, I called the doctor and was told to go to the ER. I didn't want to go to the ER. I wanted him to give me antibiotics and let me do it at home. I was not at crisis point where I would normally go to the ER. My lungs were bad, but not horrible. I was holding my own. Of course, I knew without antibiotics, this wouldn't last long. I was very frustrated.

Well, I made it through Saturday. Watched a move with my sister and had a good diner. It actually wasn't the lungs that did it this time. They played a part, but the ultimate issue was the fact that I started with severe upper quadrant abdominal pain. It caused me to double over in agony. I took a pain pill, but it didn't even touch it. 2 hours later, I took another. The pain had worsened to the point that the Zophran ODT wasn't even working to counteract the nausea. My breathing, which had been difficult before any of this started, was worse. I couldn't take a deep breath at all. So finally, and very reluctantly, I went to the ER. The ER was insane on a Saturday night of a holiday weekend, but I got right in since my o2 sats were only 81%. I had a temperature, and my blood work showed a WBC (white blood cell count) that was through the roof and an elevated lipase level. Lipase is an enzyme in the pancreas that digest fat. Elevated lipase usually indicates pancreatitis. With the PIDD, my WBC rarely goes up.

The ER doctor was actually very good. He stayed on top of things and consulted my opinion on what worked best for me. This is very rare as usually ER doctors do not understand PIDD at all, have never even heard of PI, and thus, often treatment is horrible. In addition, usually if you are in pain, ER doctors do not listen. If you have been there even once before for a condition requiring pain medication, you can be called "drug-seeking" or an "addict". This is very frustrating. While I understand the need for doctors to be cautious, I have a serious medical condition which can leave me in debilitating pain. If I end up in the ER in pain, it's usually quite severe and caused by another issue such as kidney stones. So it was quite refreshing to be asked what works for me and be taken seriously. Apparently the ER doctor had taken care of me here previously and had also taken care of me at Baystate, which is the hospital I used all throughout college. I have always received excellent care there and because it is where I was diagnosed and being treated for my immune disorder, most doctors there are familiar with my case. Needless to say, though I was hoping to avoid being admitted, I was. I do agree that it was needed, especially with my WBC being so high.

Overall, it's been a fairly good admission. I have had some minor issues with pain management, but overall my pain has been controlled. I am on IV antibiotics. Thus far, I am NPO, meaning I am not allowed to eat anything, to hopefully help the pancreatitis. My biggest concern is that I will have to reschedule my appointment in Boston.