Hi Alex,
I sent you a PM, but basically, try to get a 2nd opinion with the head of cardiology, not with a surgeon. Then, try to get the head of cardiology to approve you for a surgical consult OUTSIDE of the KP system. Tbe timeline below details my escapades with the KP system. I am a persistent bulldog, which helps.
Cardiologist
5/2003 Noticed significant decrease in exercise tolerance. Numbness in right hand while exercising, shortness of breath. Reported change to cardiologists office and appointment for echo scheduled for 5/29
5/29 Follow-up echo showed significant change in the amount of regurgitation and slight changes in size of heart. Surgery recommended and TEE and cardiac cath scheduled on 6/4 in preperation for surgery.
6/4 - Ran cardiac cath and TEE
- 4+ regurgitation
- surgery recommended in next 3 mos.
- Cardiologist will send test results to surgeons in Boulder, Denver, Cleveland
- recommended I make consultative appt surgeon in Boulder
- requested I call back in a week and a half to get feedback from other surgeons
6/9 - Met with Boulder surgeon for surgical consult. He gave a 60-70% chance of being able to fix the valve. If repair was not feasible, he would replace valve with porcine valve. Could schedule surgery w/in two weeks of decision.
6/13 - called to get feedback and info from surgeons
- received call back saying no feedback yet
- requested I call after cardiologist returned from vacation on 6/23
6/20 - LM to convey change in symptoms (wheezing ) to cardiologist, per his request
- message was returned by cardiologist's nurse
- she advised that I set up appt. to see her on 6/23
6/23 - saw cardiologist's nurse
- cardiologist's nurse said my lungs were clear, diagnosed CHF, prescribed 20 mg Lasix and 750 mg of Potassium
- no acknowledgement that cardiologist had been told of change in symptoms or commented on change
- asked cardiologist's nurse to follow up on feedback from surgeons and get back to me ASAP
- no word from cardiologist's office during the week
6/27 - called to check on status of feedback from surgeons
- was told cardiologist would call me in the afternoon
- no call received
6/30 - called to follow up on missing call from Friday
- was told cardiologist would return my call today
- no call was received
Almost four weeks have passed since initial consulation. I have received no word on scheduling, status of feedback from surgeons or results of those conversations. I find the lack of information to be extremely troubling, and I find the level of unresponsiveness to be unacceptable. I am a patient waiting to schedule major surgery, which carries enough stress unto itself and does not need to be compounded by unresponsivness, especially when expectations have been set that surgery should be scheduled within three months and that it would take 1 1/2 weeks to receive information.
7/1 - call to cardiologist's office reveals that test results had not yet been sent to surgeon in Denver or Dr. Cosgrove in Cleveland. This fact has been misrepresented for nearly a month. Kim at cardiologist's office promises to send test results out by FedEx on 7/2, for delivery on 7/3. Kim provides Dr. Cosgrove's nurse's phone number and suggests I follow up with her on 7/7 to confirm receipt of FedEx and ask for a new paitient consult.
- call customer service to find out how to expedite the process of getting surgical consults and am informed that I am ahead of myself and need to wait for Kaiser to make determination of what is medically necessary.
- call my PCP, for assitance in expediting the process with Kaiser, feeling like my condition has continued to deteriorate and further delays will be harmful to my health. PCP notifies the Kaiser head of cardiology of my situation and puts through a referral for the Cleveland Clinic on my behalf (this referral ultimately gets routed to Kaiser head of cardiology per customer service conversation of 7/7).
- Kaiser head of cardiology calls in the afternoon to reassure me he is reviewing my case and will call me upon receipt of my TEE results. I inquire about the Cleveland Clinic, and Kaiser head of cardiologyindicates that he thinks Kaiser no longer has a contract with the Cleveland Clinic. He thinks the contract might now be with Stanford.
7/2 - I call the referral center to inquire about whether or not Kaiser still has a contract with the Cleveland Clinic. I am informed that Kaiser does have a contract with the Cleveland Clinic and it is stated that Kaiser does not have a contract with Stanford.
7/3 - Kaiser head of cardiology calls to inform me he has received my TEE and since he is on call over the holiday weekend, he will be able to get back to me with his opinion.
I mention my conversation with the referral center, and Kaiser head of cardiology indicates it doesn't matter if Kaiser has a contract with the Cleveland Clinic (CCF), he has the authority to send me to any hospital he deems appropriate.
7/4 - Kaiser head of cardiology calls and indicates that he is not able to view my TEE results, but has sent them on to Denver KP surgeon for review. He provides surgeons's number and advises me to set up a new patient consult with him for the week of 7/7.
7/7 - I call Denver KP surgeon' office in the morning and schedule the earliest appointment available - 7/10 at 2:30.
- I call Dr. Cosgrove's nurse and get Kim, who is answering the phone for the nurse who is on vacation for two weeks. Kim searches for my FedEx, locates it, and asks for my cardiac cath results, which had not been sent. Kim also explains that unless my cardiologist calls to instruct otherwise, the typical review process takes 2-3 weeks. My results would be sent to a team of cardiologists at CCF, and after their review, be sent to Dr. Cosgrove for his opinion. I would be liable for the cost of $200-300 per film (I would have two films). Dr. Cosgrove schedules 6 weeks out. Kim takes my contact information and asks me to fax over a copy of my insurance card.
At this point, I am in a panicked state. Not only have have 2 of the 3 surgical opinions promised by Boulder cardiologist on 6/4 and expected to be available by 6/13 been delayed nearly a month, but I have watched my condition deteriorate at a rapid clip over that period of time. I went from having mild symptoms when exercising to wheezing and having to take Lasix to alleviate the beginning symptoms of congestive heart failure - a condition we were trying to avoid.
Boulder cardiologist set the expectation that I would be able to get a surgical consult from Dr. Cosgrove in a week and a half, and it troubled me to hear Dr. Cosgrove's assistant Kim describe a two to three week process. Given my rapid deterioration, I knew time was of the essence.
7/7 - In this somewhat panicked state, I called Kaiser head of cardiology's office to see if it makes sense to make him my primary cardiologist. I am frustrated with original cardiologist's failure to deliver on his promises and the lack of urgency I am experiencing from his office. Kaiser head of cardiology's nurse calls back and informs me that I can make the Kaiser head of cardiology my primary cardiologist, but if I do, then I have to accept his plan of care, which - at this point - does not include a consult from Dr. Cosgrove.
- I call Kaiser customer service, hoping to gain some insight into the approvals process, and understand who has the authority to make what recommendations. The service representative
and I spend pproximately an hour going through the approvals process and I am told that my orignal cardio does not have authority to request a surgical consult from Dr. Cosgrove because he is not a Kaiser cardiologist. Since theKaiser head of cardiology is a Kaiser cardiologist, he has authority to request the consult, but he is not going to because the Denver heart surgeon has indicated he thinks he could successfully perform the heart surgery in Denver.
I decide to lay low until my appointment with the Denver surgeon on Thursday
- I place a call to my PCP's office to request a consult.
7/8 - I call original cardio's office to request copies of my echocardiogram reports done at his office.
- On the way to original carido's office to pick up the echo reports, I experience severe shortness of breath while driving. My shortness of breath has been worsening over the past week, but never this severe while doing such sedentary activity. I feel like I am running a race while driving. At original carido's office, I ask to speak to original carido's nurse, Kim, and describe my shortness of breath. After consulting with original carido, she advises me to increase my Lasix to 40mg per day and writes a prescription for Aldactone. Kim indicates she has FedEx'd my cardiac cath results to Dr. Cosgrove, but has not sent the one to the Denver surgeon. When I inform her of my appointment with Dthe Denver surgeonon Thursday, she provides me with the CD for hand delivery. I explain the 2-3 week process to obtain Dr. Cosgrove's review to Kim, and she indicates she will try to get Dr. Holland and Dr. Cosgrove on the phone that afternoon to expedite the process.
7/10 - Finally,after my consult with the Denver surgeon, the surgeon agrees that the best place for me to have surgery is Cleveland, and gets the Kaiser head of cariology to approve the consult and the surgery.
8/18/06 - Successful, minimally invasive, mitral valve repair done by Dr. Cosgrove at the Cleveland Clinic
