I think I am going to change doctors. This is a huge decision. You spend years nurturing a relationship of trust and mutual respect, and walking away from it is a very hard decision. But when the trust is gone and your life is at stake, it's with reluctance that you make the hard choice to make a change.
I've changed doctors because I've moved to a different state, and that's somehow easier because there's no wrestling with the decision to change doctors. I've also changed doctors because of gross malpractice and horrendous treatment, and that's really easy. But changing doctors -- leaving someone you liked and respected, but who has violated your trust by failing you medically and simply not focusing on your medical needs is really hard.
Finding a new doctor is hard, too. You sort of want to interview them, but they don't think they have to "apply" for the job of being your doctor. But how do you know if you're going to be better off with the new one than you were with the old one? How do you make such a choice? Not only is it hard to decide to leave your old doctor, but it's really hard to choose a new one.
I started by looking in Connecticut. I've been traveling to New York for years, but if I'm going to change doctors, it sure would be great to have someone in-network, who doesn't cost me hundreds of dollars, and someone who's less than an hour away instead of 2 1/2 hours. So I got on the website of every hospital in Connecticut and looked at the gastroenterologists. I found several at Yale who specialize in inflammatory bowel disease, so I focused on them.
Then I asked the local Crohn's & Colitis Foundation for names. And I asked a doctor I have so much respect for in Boston if he knew anybody. They both came back with one name in common. I noted that he trained at University of Chicago, so I emailed a doctor I know there and asked about him. He said great things. So now I was on a roll.
But still, will he be willing to take on a patient who's pushy and determined to participate in her own care? And will he be willing to deal with how complicated my case is? How do I find this out from the start, so I don't waste my time? And how do I manage it without announcing to my old doctor that I'm switching when this new guy might be worse, but I won't know it for awhile?
And so I wrote a letter. I'm reprinting it all below because I think it's a useful sample for other patients. In it, I expressed my concern about whether he will want to take me on. I faxed it to his office this morning. By the end of the day, I had an appointment to see him. It's not for a month, but still, it's a start, and I'm optimistic.
So here's my letter. Obviously, it's very personal, but I don't pull punches here, so I figured I would give it to you in full, without editing, so you could get a sense of how you might approach a new doctor of your own. I hope it's helpful.
And I REALLY hope this guy turns out to be as good as they say he is.
Dear Dr. Ginsburg:
I am writing to introduce myself and see if you would be willing to take me on as a new patient. You were recommended by Dr. Bruce and the local CCFA chapter, and then I reached out to Dr. David in Chicago since you trained there, and he spoke highly of you, as well. So I feel comfortable that you can meet my medical needs; the remaining question is whether you want to take me on. I am a somewhat difficult patient in that (1) I believe that patients should participate in their own care management as an almost equal partner; and (2) my case is complex. Let me give you some background.
I am the founder and Executive Director of Advocacy for Patients with Chronic Illness. Essentially, we do free legal and insurance work for patients with chronic illnesses (yes, I am a lawyer). We have a contract with the CCFA pursuant to which we take on all referrals involving insurance and legal questions for them. I also serve on the public policy committee of the CCFA and the IBD Advocacy committee of NASPGHAN. I’m working on a very substantial project that involves the ImproveCareNow Collaborative (pediatric IBD doctors), founded by Dick Colletti (Vermont) and Peter Margolis (Cincinnati). I have co-authored an article and a book chapter with Dr. Athos Bousvaros (pediatric IBD in Boston). So although I work with patients with any chronic illness, I do more IBD-related legal and insurance work than any lawyer in the country. As a result, I have just enough information to make me dangerous!
My medical history is long and complicated. I am a single white female, and morbidly obese (I started a diet on Monday). In a nutshell, I was diagnosed in 1977 at age 20 after being sick and being sent to a psychiatrist for several years. At the time, I had what we thought was an ulcer along with Crohn’s colitis. (We now believe that what they thought was an ulcer was Crohn’s in my duodenum, which I’ve had since then). I was treated with Azulfadine and, ultimately, prednisone. I had several obstructions and a localized anal fistula all through law school, and I was very sick, and was hospitalized to be put on TPN during breaks from school.
I had my first resection (at the cecum) in 1985 at Dartmouth, which did not improve my symptoms at all. I remained on prednisone for a long time, but also started Imuran after that first surgery, when I consulted Dr. Daniel Present. It did not improve my symptoms, but I was then living in Miami, and I started swimming and losing weight, and ultimately, I was doing better and finally got off prednisone after 12 years. After several more obstructions, I had a second resection – at the terminal ileum this time – in 1994 at Hartford Hospital (Jeff Cohen). I did really well after that, and was on only 6-MP and Asacol for about 7 years.
In April 2001, I had another obstruction and another resection at the terminal ileum. After that, I had 11 months of severe, uncontrollable fecal incontinence, which rendered me homebound. That started about 3.5 years of acute illness. I was started on Remicade, but it did not work. Colonoscopy and upper endoscopy showed severe, active Crohn’s in the stomach, duodenum, small intestine, and colon. I was seeing Dr. Ted Loewenthal, and then Dr. Michelle Smedley, at Hartford Hospital. They didn’t have a clue what to do. Ultimately, my legs swelled to the point at which the skin was starting to split. I went to Dr. Mark Peppercorn for a consult, and then I finally got really scared and asked the then-head of the CCFA national for a referral, and he sent me to Dr. Ellen S. She saved my life. I had no Vit D and calcium, and hypoalbuminemia. I saw and endocrinologist and a nephrologist. Both of them, and Dr. S, told me that my kidneys were shutting down and I was dying as a result of severe malnutrition and malabsorption. They loaded me up on Vit D and I focused on getting protein in me, and I ended up losing 23 pounds of water weight in 2 days.
I still had a lot of pain and active Crohn’s. We did a second trial of Remicade. It did seem to help, but I had a very scary adverse reaction. My ANA titers spiked and I ended up with a liver biopsy that showed fatty liver, but nothing worse. At that time, Dr. S said I could never risk trying another biologic. Since that time, I have been on Colazal, Azasan, Colestid, and Xifaxan at varying dosages (I will list my current meds at the end of this).
In November 2003, I had a lysis of adhesions for very bad pain, along with a hysterectomy for uterine fibroids (and my mom died of ovarian cancer). In March 2005, I had a hernia repair. In January 2006, I had a second hernia repair. Last July 2008, I had a second lysis of adhesions. These four surgeries were done by the miraculous Dr. Jeffrey Milsom, who was able to peel adhesions away without cutting bowel at all.
Sadly, after last year’s lysis of adhesions, I still was having trouble keeping food down. To make a long story short, I had a gastric emptying study that showed zero emptying at 90 minutes. So we have treated with Reglan and Protonix for gastroparesis, which is the only combination we have found that prevents vomiting. And I no longer eat anything that has to be chewed. I’ve gained a lot of weight in the last year because I tend to eat too much sugar because there isn’t much left in my diet that helps my energy level.
On a lot of medications, I was having roughly 5 loose stools a day – not great, but good enough so I could leave the house and have a life.
That brings me to my current flare. Last February 2009, I had a root canal that abscessed. I had to take Clindamycin. I got very bad diarrhea. Although all stool tests came back negative, Dr. S, along with a local gastroenterologist Dr. Donna Cipolla, decided that it was a false negative for c-diff and treated me with a round of Vancomycin. When that didn’t help, they did another round of Vancomycin with a slow taper. When that didn’t work, and I started to have some serious pain, I had a CT scan. It showed a small hernia below the mesh from previous hernia repairs. The radiologist said so, Dr. Jeff Cohen (surgeon in Hartford) said so – but Dr. S said there was no hernia, and that she thought I had inflammation in the abdominal wall that “transmigrated” to the bowel, causing my diarrhea. I swear that’s what she said – I have her dictation in writing. She wanted me to see Dr. Milsom (surgeon in NY). I saw him on Monday, and he said I do (of course) have a hernia, but he also sees some thickening of the walls of the colon, including the transverse colon. He couldn’t get a good enough look at the small intestine to see if there was thickening there, too. I do not have inflammation of the abdominal wall. I have known Dr. Milsom to be very expert at reading CT scans. Last year, everybody thought my CT scan was normal, but Dr. Milsom saw that a loop of bowel was stuck to a piece of hernia mesh, which was causing severe pain. When he operated, he found several loops of bowel all stuck together. So I trust his read of the CT scan. Both Dr. Cohen and Dr. Milsom believe I should get the Crohn’s under control before I have surgery to repair the hernia, which Dr. Cohen will do in Hartford Hospital when the time is right.
For several reasons, including Dr. S’s very strange “transmigration” theory and the fact that care was delayed since February (and other reasons which you don’t need to be bothered with unless you want to know – I have no secrets), I decided to see what my options were in terms of switching gastroenterologists. Obviously, if I could find someone in Connecticut with the requisite expertise with whom I get along (meaning someone who appreciates a knowledgeable patient who participates in her own care management), not only would it be easier in terms of travel, but seeing an in-network physician would help financially, as well. So I put out feelers, and that’s how I got to you.
Currently, I am having 10+ very loose, floating stools every day. On June 5, 2009, my SED rate was 48 and my c-reactive protein was 1.37. On June 18, 2009, my SED rate was 18. We’re checking it again; I should have results today. I am on the following medications:
Azasan 150 mg/day; Colazal 750 mg 6 per day; Protonix 40 mg 2/day; Colestid 4 grams/day; Xifaxan 200 mg 6 per day; Regland 2 per day; elavil 100 mg at night; Klonopin 1 mg at night; B-12 shots monthly; citraciol .25 mcg/day; drisdol 50,000 IU per week; folic acid 1 mg/day; B-6 50 mg once a week; Align and Florastor probiotics; Allegra 60 mg/day; Atenolol 50 mg.
And that’s the story. I need to be very candid. I will only bother you when I am sick, but when I am sick, I will expect you to pay attention and help me figure out what to do. I hate being on so much medication, but I’ve tried cutting things down, and with few exceptions, I have not had any luck. I was on Pentasa for awhile, but got headaches if I took more than one per day. I tried Apriso about a month ago and it added nothing. Increasing the Colestid has done the most good, but it’s not good enough. I cannot eat or drink anything if I have to leave my house. I can’t live like that forever, especially since I do have to travel for work, which typically means I don’t eat for 2 days at a time. I need a doctor who is committed to helping me have a life.
If I were to stay with Dr. S, her next step would be to scope me. I am very difficult to scope due to adhesions and strictures, and Dr. S is very expert at it, and has gotten through the anastomosis at the terminal ileum. My last scopes were September 2008. They were normal except for some spasticity and two strictures in the proximal ileum which Dr. S dilated with a balloon, but Dr. S doesn’t take pictures or anything, so all I have is her dictation, and I’ve just told you what it says. I did not want her to scope me and then change doctors and be told I needed a second round of scopes because she didn’t write a good report or take pictures. But I will tell you up front that I am difficult to scope. The conscious sedation doesn’t work very well. The last scopes I had, I had 10 mg of Versed and 125 mg of Demerol and was wide awake. The good news is I can tolerate a lot of pain.
I would like to meet with you and see if we hit it off as well as I hope we will. I have lots of my medical records and will bring you what I have that’s of any use. But all of that depends on whether you’re willing to take me on. When I’m sick, like I am now, I will need your attention. However, when I’m back to baseline, I won’t bother you at all other than for prescription refills. I am an intensely compliant patient, but the care plan has to be one that I at least understand.
Part of my job is to encourage and teach patients to participate in their own care. My belief is that patients who participate in their own care are more compliant with doctor’s orders and, thus, have better health outcomes. I believe this to be true in my case. I would have died not once, but twice, had I not taken an active role. (The second near-death experience I had was at the hands of Michelle Smedley, but it’s not important for your purposes unless you want to know).
With all of that said, would you be willing to see me and consider taking me on? I am trying to be honest up front. At times like now, when I’m sick and unhappy, I will take some of your time and attention. I need a partner to navigate the tough spots. But I do my own insurance appeals, I will never ask you to write a letter for me – I will be very sensitive to your time constraints when my needs are not pressing.
What do you say?
Jennifer C. Jaff