Handling different diagnosis and treatments between PCP and cardiologist

I am so thankful to have stumbled across this website! I am learning so much more in addition to the research from medical journals I'm also doing.

Here is our story...
My mom went into the hospital for blood in her urine and some mild blood discharge on her underwear from the rectum. It turned out to be from hemorrhoids thank goodness but she ended up getting a silent MI in the emergency room several hours later. This fell through the cracks and she was admitted and had a colonoscopy and upper GI done 2 days later.

We found out later on from the hospital records that the telemetry reports indicated major problems shortly after she was admitted but nobody started any cardio workup until 3 days later when her fever shot up to 103. They discovered at that time she had severe aortic stenosis and will need surgery to fix it. They also discovered ischemic colitis from the colonoscopy and a hiatal hernia from the upper GI.

We also found out that this hospital has major problems and lost their Medicare license for 4 months last year. She doesn't want to go back to this hospital and it is the only one her PCP goes to.

So, while I'd rather not switch PCPs midcourse before this major surgery we have few options unless we want to go back to this hospital.

We haven't talked to any surgeons yet but we are running into problems between her PCP and cardiologist recommendations and diagnosis.

The first cardio assigned to us at the hospital could not answer our questions directly. He suspected my mom had endocarditus. Note that her PCP didn't even tell her to take an antibiotic before any dental procedures even though she has had a slight heart murmur for the past 18 years. The cardios notes say she had congestive heart failure after the MI but never told us. The PCP claims it was pneumonia. With her high fever after the gastro procedures, severe fluctuations between chills and hot flashes in the hospital, blood in the urine, and dental work done the prior week, I tend to favor the cardio's opinion. The cardio acted like he didn't know when she had her MI and the PCP admitted it happened the first day.

Our second cardio (new hospital with good reputation for valve surgery outcomes per healthgrades.net) wanted to do a catheter test immediately. He is an interventional cardiologist. Her PCP says the procedure is too risky to do before six months after an MI but he also told me on the phone that he would have more time to spend with her if she waited that long. The important thing is that her heart has had a chance to stabilize and after 3.5 months since her MI her blood pressure and lungs are okay. She doesn't present with any other symptoms. The first cardio told me he thought she had major blockage even after doing only an echo test. The PCP thinks her heart attack was not caused by blockage at all but by her stenosis.

We will be visiting a third cardio tomorrow. (hospital with good reputation that might be able to do minimally invasive valve replacement if she doesn't need bypass from blocked arteries) He treats geriatric patients and we will see if he thinks she needs immediate testing or not. My mom is quite frail and doesn't move around well due to arthritis and has a very low pain threshhold. I don't think the other cardios are taking that into consideration.

I feel so bad for her having to switch PCPs but her current one told us if she had the surgery done at a hospital other than his, he didn't want her as a patient any longer. At our 6 week post hospital follow up visit he had refused to give us a referral to a cardio from another hospital or authorize an ultrafast CT scan. I later found out his hospital doesn't have one setup yet.

I switched her insurance so we could see specialists without his permission.

My mom is in no hurry to have her surgery and would prefer to wait until the weather gets warmer and nicer in the spring. There's also fewer colds and flu going around. So, for now we are just gathering information and visiting doctors at a snails pace. I've already called the surgeon's offices and there is not as long of a wait to see them thank goodness.

In the meantime I'm trying not to worry about my mom being a ticking timebomb since we haven't ruled out blocked artery disease.

My mom doesn't care for specialists much so it is difficult to explain to her that it might be better to follow the advice of a specialist over her geriatric PCP. She just thinks they are in a rush to treat her problem without taking everything else into account. Of course, I'm certain she's also worried she won't survive the surgery especially if they have to do bypass with it.

My mom is a worrier so maybe she should just wait to find out how much blockage she has the night before her surgery. The problem though is that it would affect her choice of surgeons and the hospital she goes to. She, of course, doesn't want her chest cracked open if they can do it through the ribcage.

She's also worried that if she has the catheter test, they will want to operate on her immediately before she has a chance to meet the valve surgeons. I try not to scare her that it might be that serious but I feel like we are in the dark right now without a blockage test.

Everything will ultimately be "her" decision but I want to make sure she makes an informed one and has all the facts and risks to consider when making it.

Sorry for the long post but I felt all the details were necessary. lol

Maybe if I can show her what doctor (PCP vs. cardiologist) most women would rely upon to make up their mind, it will help her.

At this point, I am just offering it up in God's hands to take care of her till she makes up her mind. I don't want to stress her out like I'm feeling about the whole situation.

By 1spudcat
Posted February 26, 2009 at 11:04 pm
Report post

You definitely have many issues to deal with, your mom's health, age and so many opinion from doctors and then there is that one PCP behaving very badly. I will share my experiences and perhaps they maybe helpful.

My mom (76) was diagnosed with pneumonia by her PCP. What it was ...was congestive heart failure. When he realized her heart was on the verge of a major heart attack he sent her by ambulance to a wonderful hospital but she had a massive heart attack on the way and for all intents and purposes was dead on arrival though she remained on life support for another week. Following her death, they did an autopsy (since this was a teaching hospital) with our permission. What they discovered was that previous to this MI she had silent ischemia that had damaged 50% of her heart already. Basically she had no chance with this final MI. This was a rural area and she was treated by a PCP who had always been very good with both my mom and dad. Unfortunately he was not a cardiologist.

My dad was in a hospital for diverticulitis at 83 and awaiting a colonoscopy. Well he hates hospitals and was so nervous he gave himself an MI while the doctor was present. He saw a cardiologist and 83 he had a CABG x 4.
He is now 87 and doing pretty good despite his congestive heart failure which is mostly under control. Between his PCP and cardiologist they work together to keep his heart pumping the best it can. He has right diastolic failure and the balance of meds is tricky particularly when he get sick he can dehydrate quickly. the next thing you know he is in the ER full of fluid but dehydrated all at the same time.

I believe had the cardio (a good doctor and compassionate guy who is not full of himself) and the PCP (a good doc too who I have known and trusted for a long time) had not respected each other and worked together, Dad would have been in worse trouble. My PCP who just turned 60 when it came to Dad's heart would always check Dad and give his opinion but would also tell us to follow up with the cardiologist who is a young whipper snapper at barely 30.

The point I am making is the cardiologist when it comes to the heart has the say in my opinion if he is good at what he or she does. However the care is so much better if the PCP is onboard and on the same page. Hope you find what your mom needs. Spuds

By kk_stl
Posted February 27, 2009 at 2:19 am
Report post

1spudcat
Thank you so much for sharing what was probably a painful memory to recount of how your mom passed. You don't know what a relief it is to hear an objective person confirm my feelings.

My research indicates that it is more difficult for frail women to survive a bypass or major heart surgery. Perhaps that is why doctors don't treat them as quickly and aggressively as men. While it gives me hope about your dad doing so well at his age, I can't shake away the fear that I am experiencing. I know that we have to give it a shot though and place it into God's hands and hopefully some competent doctors and hospitals.

I can relate to your dad's reaction over the colonoscopy. My mom has chronic IBS with diahrea and the cleaning out process pushed her over the edge especially when the CNAs at the hospital yelled at her for having accidents before she could get a bed pan under her.

Then after the colonoscopy procedure was done, she awoke during the upper GI and started choking. I warned the staff this happened to her 40 years ago. My mom kept pushing them away from her because they couldn't get the tube down her throat. Well, the hiatal hernia they found was so large that part of her stomach is pushed up to her esophogus. There was a reason they couldn't push the tube down further!

We live in a major city so it will be easy to switch to another PCP. We also have a major teaching hospital that does alot of clinical trials and newer advances in surgery but they still don't do minimally invasive bypass.

I am the caregive, researcher and mediator in my family. My older sister doesn't have the time to invest in this and lives out of town. So I pretty much navigate as an only child in caring for my parents. She doesn't care much for this PCP. I first went to this doctor myself 18 years ago and he is not the same man. When I tell others how he will not coordinate my mom's care if she goes to a different hospital, many people are in disbelief.

The second cardio at least told us the heart muscle looked good. The first one would not comment. He was from the same hospital as her PCP and I think he was afraid to disagree with him.

I am going to ask the third cardio tomorrow if he can recommend a PCP that he works well with. I am of the same opinion you mentioned that the two need to respect each other so that they can coordinate better care for the patient.

Even my dad's PCP told him he didn't need to goto a cardiologist after his CABGx4 18 years ago. He said he could do the exact same thing that a cardio would do. Well, this past fall my dad had a spasmatic cough he couldn't get rid of. The PCP was on vacation and a substitute doctor took an xray and diagnosed him with pneumonia. The medicine didn't help so when my dad did a follow up with his PCP the only thing the PCP told him is that it wasn't pneumonia. My dad didn't bother to ask what he thought it was. With the research I'm doing, I'm guessing it might be mild CHF.

My dad only goes to a cardio now because he developed afib several years ago. It is the same one they assigned my mom in the hospital...doctor of few words. He was treating him with coumadin and after several months I got tired of waiting and went with him to his appt. The doctor quickly acknowledged that he would do the procedure to shock the heart rythym back. I didn't even have to open up my mouth. He knew why I was there. lol

Any cardiologist we find probably wouldn't fit my mom into his schedule quickly if she develops let's say a cough which could quickly escalate into something worse after a heart attack or might even be heart related. So, we need to find a good PCP. Insurance plans don't make it easy only allowing you to switch once a month.

Over the years, my mom had such terrible experiences with her PCPs that she kept switching them. This last one was the only one that at least listened to her patiently but he is too busy to care for her properly, not to mention being full of himself when it comes to the family asking him questions. She said she doesn't want to go through that whole process again. I don't blame her.

Please pray that we find good doctors for her before anything bad happens.

I truly believe God puts people into our lives for a reason and you sharing your story with me is no doubt a gift from Him.

By Ecksunbeam
Posted February 27, 2009 at 6:33 am
Report post

Dear KK,

This is definitely a tough one.

1) Is your mother on any cardio meds? If not, at the very least she should probably be doing an aspirin a day to keep her blood thin--just in case.

2) You say she changed insurance companies. You might look for a PCP with a sub-speciality in cardiology. Someone at the insurance company might be able to help you with this.

3) It seems you might be assuming she will need some kind of major open heart surgery when this might not be the case at all--so don't put the cart before the horse.

4) You might try calling a medical school attached to a teaching hospital. Talk to the department head(s) re: her complex issues for for advice and referrals.

I wish you the best of luck.

May the Blessings Be!

Sherrie

By kk_stl
Posted February 27, 2009 at 7:34 am
Report post

Sherrie

Those are great ideas! Thanks for the great advice.

My mom was taking 4 blood pressure meds to control her resistant hypertension. The 4th one did the charm. Rather than eliminate the others, he said he wanted her to take all 4...beta blocker, ace inhibitor, calcium channel blocker and a diuretic. After her MI, we found out that this was mostly the regimen of meds a patient is supposed to take "after" an acute MI. The doctor thinks taking that regimen helped her survive the MI.

Before she went to this doctor 8 years ago, another much younger doctor wanted her to use an ace inhibitor alone. She now takes potassium and a loop diuretic since she went into CHF after her MI. The doctor never answered her questions in the past about taking an aspirin but she took one anyway. She now takes 1 baby aspirin.

Yeah, we might be jumping the gun on CABG without a cath test but I think that the ischemic colitus diagnosis is indicative of significant hardening of the arteries. Of course, there are always miracles that can happen.

I have a tendency to plan for the worst but hope for the best. I hate surprises and feel more in control if I'm one step ahead. lol

By Kennarina
Posted February 27, 2009 at 11:04 am
Report post

Hello KK
Whew, what an overwhelming mountain of confusing, conflicting and challenging information you are forced to digest and translate here!

<< "....wanted to do a catheter test immediately. .. Her PCP says the procedure is too risky to do before six months after an MI ..." >>

I'd guess the PCP has never had an MI himself that required an emergency angioplasty! I went directly from E.R. to O.R. after my heart attack, and bloody lucky thing I did, as my left anterior descending coronary artery was 99% blocked by then.

The angiogram (catheterization) is considered to be the 'gold standard' of diagnostic tools that doctors have to diagnose exactly what's going on inside those coronary arteries. The sooner the better.... You don't have any cath results yet so you really can't predict at this stage whether CABG is even indicated for your mother.

I'd vote for a cardiologist's opinion over your PCP's opinion any day, no matter how knowledgeable the PCP thinks he/she is.

Good luck....
XOXOX

By Ecksunbeam
Posted February 27, 2009 at 11:40 am
Report post

Dear KK,

I agree with Kennarina on the angiogram--and that I'd take my cardiologist's advice over my PCP's any day of the week. There is really no good necessary reason to wait on the cath.

May the Blessings Be!

Sherrie

By kk_stl
Posted March 2, 2009 at 9:52 pm
Report post

I'm happy to report that my mom went to see a third cardiologist affiliated with a major university hospital in our area on Friday. We were there for over 2 hours! I think we wasted alot of time with a newbie cardio who was taking her history and I'm not sure he got all the relevant facts. He was feverishly looking over the hospital cardio's notes and didn't have much else. I knew we were in trouble and I handed my book of records over to him that contained alot more information.

After spending awhile looking at her echo and xrays in private, the experienced cardio talked to us. He also examined her carotid arteries. He remarked to the student doctor there was sound on the left side. The hospital cardio's notes said carotid upstroke was 2+ which more moderate or severe. I'm hoping this is just a symptom of the aortic stenosis and not a signal that a stroke is coming down the road.

Apparently, not all echo tests are created equal and he wanted the test retaken as well as an adenosine thallium stress test. He wants her to start cardiac rehab ASAP. He also added a statin to her med list.

Oh, did I mention that when we switched insurance and her liquid potassium was no longer covered and we had to switch to powder packets they reduced her dosage in half by mistake. Too little is better than too much but just an example how reviewing things closely catches errors.

I think before my mom starts cardio I will insist on a cath test. I've read too many threads here about how the stress test only works accurately on 80% of patients.

Has anyone done research about preventing or diagnosing a stroke? She has a strong family history of it including paralytic stroke.

Her BP before she takes her heart meds has been as high as 170/180s but then at late night it's gone as low as 109. Her diastolic hasn't gone below 50 and her pulse rate is typically very close to the diastolic number. The cardio didn't adjust her BP meds because they only had one reading of their own but when I explained we have been logging it, he looked surprised and at the new student. I'm sure he figured she could have white coat syndrome and didn't make much about the 150s reading that day. But he also said he doesn't want to risk it going too low on her. Does anyone know why her BP is fluctuating more than 70 points like that? I put a call into the doctor's nurse so we can discuss it more.

I would rather the cardiologist manage her heart meds instead of her geriatric internist but when I told him about the question with the potassium levels, he said he would defer to their decision. I brought copies of a week old blood test with me so I'm not sure why he couldn't have intervened.

At least he politely said he couldn't think of a good reason to delay her testing as her PCP had recommended to us. lol

I guess what I liked about this cardio is that he presented us options regarding the testing and he considered the fact that she is 78 years old, extremely out of shape, and frail. If we are able to postpone the surgery till she gets her heart in better shape I think we'll have a better outcome.

I've talked to surgeon offices about that exact issue and they said they had patients in wheelchairs coming in all the time! I guess in an emergency situation you don't have a choice but why rush if you have some time?

Thanks so much for your support. I feel like I need to read most every post to add to the info I've researched. lol Unfortunately, the search function doesn't seem to be working very well when I lookup certain words like ischemic heart disease, etc.

Welcome to Inspire!

Explore topics in this discussion:

7 replies

Add to the discussion

Group leaders

You