Issues about procedures at major teaching hospital

Hi Heart Women sisters,

I am so grateful for finding this website. I am amazed at the amount of support and the knowledge of everyone!

I need some advice and to vent.
We continue to be on a rollercoaster ride regarding the seriousness of my mom's condition. It is just over 4 months since her heart attack. She is asymptomatic but that is the bad thing about heart disease...it can be a silent killer if you don't get the angina warnings. Her last echo test indicated an inferior heart attack in addition to an anterior one...nobody will tell me if this has happened since November or if the hospital's testing and diagnosis missed it. Let's just say that the hospital she had her heart attack in during November has some serious deficits.

My mom is getting a catheterization test this Tuesday morning. This is our 3rd attempt to schedule it. Her insurance is fixed; no major snow storm predicted; and, as of today, her flare up of ischemic colitis does not require hospitalization.

I'd be lying if I told you I wasn't worried. Yes, it's an invasive procedure so there is an element of risk. I asked for the complication percentage at the hospital and got no answer. I can trust God but I can't trust the doctors or hospital completely. While we are at a high volume hospital affiliated with a major medical school, we didn't have the option to schedule the test with a specified doctor. You get whomever is assigned on the day of your test. Now, isn't that nice...a lottery draw of doctors (on an outpatient basis) when it comes to your life! I can understand the randomness in the ER but for outpatient...give me a break! Oh, and did I mention that the website indicated all tests would be done by a faculty member, not a trainee, but the test scheduler told me since it was a teaching hospital, there would be a trainee to assist?! Let's just hope this doctor isn't a major delegator. Gee whiz! The scheduler told me some people insist the trainee not be present during the test which means that a tech or nurse would assist the doctor. Apparently, sometimes he needs more than 2 hands?! How many hands does it take to feed a catheter through an artery for pete's sake?! Sorry, I needed to vent.

Our optimal wish is to have a long window of time to delay the valve surgery until less invasive procedures are mainstream. The last echo retest indicated the valve blockage is worse off than in November so this option seems unlikely. There is also the question of the extent of coronary blockage. Her stress test came back abnormal. We are hoping that if there is coronary blockage, it can be fixed without open heart surgery (e.g, stent, etc). She will also be evaluated for a clinical trial of replacing the aortic valve through a catheter referred to as percutaneous. Unless the doctors take some liberties in bending the criteria to qualify her, I don't think she will be eligible for it. We'll have to wait and see. Our other option would be a minimal incision above the chest bone to replace the valve. However, if she needs coronary artery bypass, they will opt to do the valve replacement with open heart surgery also. Open heart surgery involves risk of mental function decline from being on a heart/lung machine and the trauma of such a surgery can be a major setback for recovery. Then there's always the risk of infection or pneumonia setting in. My mom wants to try the minimally invasive approaches if she qualifies even though it has not been perfected at this point in time.

I try to be very clear and careful of what I am asking God for, in case I ask for the wrong thing. lol I know it will ultimately be his call on what happens so I'll have to learn how to trust him about that. I've heard of stories where someone's cancer disappears before they begin treatment...I've never heard of blocked arteries being unblocked before treatment but I'm sure willing to ask for it! It would make our options so much better.

The gameplan with her cardiologist (before the latest tests) was to get my mom on an intensive rehab program to build up her heart before having surgery. Nevermind that is what I wanted to happen 4 months ago. However, with the latest test results we are wondering if that will still be an option. The cardio wants to wait until "after" the cath test to talk to us about our options. I'm guessing he doesn't want to offer any more hunches before the test as his other ones seemed to be way off mark. This is our third cardio in 4 months.

If my mom does require an invasive procedure, please pray that the doctors on duty be blessed with skill and good decision making abilities. I got their names on Friday and one has only 6 years of experience and the other 17 years. English is not the first language of both these docs! Good grief...that's exactly what I need...trying to figure out what the heck they are trying to say to us when I can barely understand the medical terms in English! I guess it will be a crapshoot as to who gets to work on her though you can bet your life I will try to insist on the one with 17 years. I'm trying not to be unreasonable but there are other interventional cardios with more experience. We would just have to reschedule on another day and the scheduler was not happy when I suggested doing that on Friday.

I've been fighting so hard for her rights all along. I'd hate to stand back now but I guess we will just have to trust that God will take care of it? I already feel like we have delayed this test long enough but the scheduler won't tell me what days my preferred doctor (30 years experience) is scheduled in the test lab! I haven't dismissed the option of showing up in person at the hospital to get this resolved as they didn't want to give me their phone number! They told me everything is handled through the doctor's assistant, not the patient. Maybe I just need to elevate my request to a supervisor?! Well, Wednesday was our second choice of test days but our cardio logistically cannot meet us at the hospital since he is seeing patients at a different location that day. We saw first hand how not much gets done on Fridays and weekends at a hospital so we don't want the test done on Thursday. If they put in a stent it would require an overnight stay for observation. Then, we ruled out Monday since everyone is sluggish from the weekend. Ughhhh...why do some things have to be so difficult?! Any advice on what to do about my concerns? Take a chill pill or be persistent and assert our rights about picking our doctor to do the test and interventional procedure if needed? I don't want to have to schedule another cath procedure if they want to give us the newbie interventionalist.

My mom is trying to put on a brave face but I know her better. I haven't burdened her with my concerns about the test. She is worried enough as is!

Our insurance will let us goto a specialist directly without a referral though the experienced doctors at this hospital require a referral. hmmm I asked her general cardiologist for a referral over a week ago but he has ignored my email. I'm guessing he forwarded it to his nurse and she is ignoring it. Do I insist on speaking to him about this to find out what's up?! There are about 30 docs in this practice so I'm guessing he is having his buddies do the test/procedures instead of letting us specify who we want?!

By martzj
Posted March 22, 2009 at 11:09 am
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hi kk,
"Her last echo test indicated an inferior heart attack in addition to an anterior one...nobody will tell me if this has happened since November or if the hospital's testing and diagnosis missed it. Let's just say that the hospital she had her heart attack in during November has some serious deficits.

My mom is getting a catheterization test this Tuesday morning. This is our 3rd attempt to schedule it. Her insurance is fixed; no major snow storm predicted; and, as of today, her flare up of ischemic colitis does not require hospitalization. "

I hear how scary and frustrating it is to have no control over what goes on in any hospital. Are they absolutely sure about your mom's ischemic colitis at this point? It can literally cause colon segment death, very similar to heart attack (at any age, even kids)....dead colon segments need to be removed in some way or create risk for heart attack...the infection from colon travels through the blood stream. Sounds like a possible contributing culprit and you might consider pressing harder for it to be dealth with ASAP.

A question to ask: What impact is the dying colon tissue having on the heart muscle. How are they planning to manage keeping inflammation from the heart?"

The cath is your mom's least invasive way of discovering and correcting heart blockage. I hear your deep concern about inexperienced teaching hospital assists....but they train on non-humans for many many hours, years before they are allowed anywhere near a human. And only a select few are certified to be interventionists (cath docs)....so they can stay in continuous practice....which greatly benefits patients.

Best of luck to you mom on cath day. She is lucky to have such an active caring advocate like you (smile).

Let us know how it goes.

Jaynie

By kk_stl
Posted March 22, 2009 at 3:44 pm
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Jaynie,
Oh my gosh, I can't believe your knowledge! You are a living angel of God!

They discovered the ischemic colitis when they did her colonosopy in November. The gastro took a picture of it and said in his notes "it was approx 25 to 45 cm above the anal verge which involved the distal descending colon and proximal to mid sigmoid. He did not see any deep or significant ulceration." I guess they confirmed it with a biopsy as the diagnosis was documented on her hospital discharge papers.

He told us that it clears up on it's own. There was no medicine or anything to do for it. He recommended a follow-up colonoscopy in 10 years, if needed, to sleep on a wedge, and to take nexium for her large hiatus hernia they discovered. He said her PCP can treat her. There was no need for him to see her again.

Since she has had chronic IBS with diarrhea for over 30 years (treated with immodium AD and diet) whenever she gets a stomach ache now and sees blood I assume it's the ischemic colitis. She usually doesn't get many stomach aches with her diarrhea. She never had visible blood in her stool before.

I called her primary doctor with this latest episode. The blood in her stool was not significant. It was only the size of a dime. She said she didn't strain much to go but did bear down a little. They did say she also had some hemorrhoids.

The PCP told me Friday that if the blood was significant she needed to be admitted to the hospital. Other than that he just recommended she not upset the colon and stick to a liquid diet the first day.

She did not have any visible rectal bleeding in her stool in November, just a slight discharge on her underwear, size of a quarter. But an exam with a finger insertion produced blood.

She did have blood in her urine the day before and passed two blood clots when urinating. That is why we went to the ER in November.

Her PCP says the blood in the urine was from the ischemic colitis. The hospital cardio suspected endocarditis when she spiked a 103 fever after the colonoscopy and had extreme fluctuations from fever to chills. The PCP attributed that to pneumonia.

I wanted her to get checked for uterine or bladder cancer. Nobody wanted to do that. Her PCP asked me what good it would do to find that out! Unfortunately, doctors want you to wait till you hemorrage to investigate that path. By that time the disease is typically Stage IV.

Here I've been focused just on the heart and I guess I need to take a step back since her PCP doesn't seem to be doing that! Unbelievable.

The new cardio's nurse sounded surprised she had the ischemic colitis. That doesn't surprise me since a newbie trainee was taking the medical history. I followed up with a summary via email but I guess this fell through the cracks.

I've got 2 more questions...
1)Is there an electronic version of an ECG or EKG available?

The hospital told us the interpreting doctor will take a snapshot and document his findings and that is the only record available. I don't know if they missed the RBBB and inferior MI from the first few EKGs. She also has 1st degree AV block. I am concerned that if they don't rule out left anterior or left posterior fascicular block, she could develop complete heart block called trifascicular block.

In the ER, the nurse told us she had an MI but no records were produced that support that. We were told at the records department that the ER keeps records differently than inpatient procedures but didn't direct us how to track that down.

Yes, they went ahead and did the colonoscopy and upper GI after reporting the MI to us. I didn't find out what an MI meant till after talking to the gastro. He said PCP's notes indicated a previous history of MI which was not the case at all. She tripped the ECG in the hospital ER. PCP acknowledges she had an MI the first day at the hospital.

And the drama of not knowing WTF really happened unfolds once again.....

2)Is there a disk copy of the colonoscopy that would help pinpoint the ischemic colitis diagnosis or do I need to get the pathology report of the biopsy. I'm just working on gastro medical notes during her hospitalization.

God bless you for helping me sort through this maze!

KK

By martzj
Posted March 22, 2009 at 7:43 pm
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KK,
Colonoscopies only take photo snapshots of normal and problem areas, not a running video. I've always been given photo copies that are numbered along with the chart copy explaining significance of each image. They should be giving your mom her own personal colonoscopy pix copies already.

"Her PCP says the blood in the urine was from the ischemic colitis. The hospital cardio suspected endocarditis when she spiked a 103 fever after the colonoscopy and had extreme fluctuations from fever to chills. The PCP attributed that to pneumonia.

I wanted her to get checked for uterine or bladder cancer. Nobody wanted to do that. Her PCP asked me what good it would do to find that out! "

Sorry to keep harping on the ischemic colitis....but it can hide on folds outside the colon....especially if there is some sort of odd hidden folds in the colon. Blood supply to that part of the colon is stymied by blood vessal blockage, just like in heart attack....and sepsis sets in. This may need to be investigated via abdominal laproscopy (i.e., they go in and take a good thorough look around to make sure no septic bowel is lurking behind organs unseen). Your mom's high fever of 103 is worrysome....I would be all over them about that because they may have created a septic incidence via biopsy. Sepsis needs to be shut down very aggressively. Unfortunately, people die from ischemic colon sepsis if it isn't caught in time.

Your mom has a long complicated intestinal history and my heart goes out to her. She has already had a heart attack and damage is done if they are picking up on dead enzymes in the bloodstream. The best thing you may be able to do for your mom is stay on the docs about the 103 fever and damage from the colon bleeding.

I spent most of a decade w IBS w D....finally found a fix for it myself....and have been free for almost a year now. There is no cure for this version of IBS at this time as you and your mom know. It is created when antibiotics are given and destroy too much good bacteria in the GI tract. Patients have to figure out ways to rebalance inner ecosystem.

Bleeding could very well be from hemmoroids but with her history she needs annual colonoscopies at minimum. Gotta keep a close eye on dead colon tissue. At this time it could be more problematic than the heart attack.

Best wishes to you and your mom,
Jaynie

By martzj
Posted March 22, 2009 at 7:56 pm
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KK,
I meant to add that I was unable to take Immodium because I had an acute MI at 41....Immodium side effect is increased heart rate, and heart patients are advised against taking Immodium. I have a history of cardiac arrhythmias, dropped beats, occassional fainting. Your mom's cardio will need to be advised your mom is on daily Immodium and what other alternatives are available that won't create more cardiac risk.

best, Jaynie

By kk_stl
Posted March 23, 2009 at 12:24 am
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Jaynie,
I wish I could just hug you and thank you for alerting me about this stuff! All doctors to date have not said anything about the Immodium AD before or after her MI. I list all her supplements and it is an extensive list.

Her humility and pride is tied into controlling her diarrhea. She has been concerned herself about taking the Immodium that frequently. They told her she is safe if she takes up to 8 per day. I'll have to find out how you got yours under control. We were just talking about that tonight! She said she would like to figure it out after her heart matters are cleared up.

Gosh, I was really feeling low after talking to a friend of mine today. Her spin is that my advocacy could be scaring my mom's doctors from treating her. She thinks they will worry that we could sue them with all my questions and follow-up. That was difficult for me to hear but I have to admit I am concerned that they don't realize it is the love that is putting me in overdrive probably coupled with my OCD and perfectionist tendencies. lol

My heart is in the right place and I just know that healthcare professionals have to be superheroes to avoid making mistakes. They are human and humans make mistakes. I want to partner with them so we can avoid any. It's not about pointing fingers at anyone. The healthcare system is broken and they are overworked and underpaid.

I have decided I'm gonna let the hospital's reputation ride and just let their scheduled doctors do their job. I guess it's the principal of the matter that sorta bugs me.

It's just that they have a sister hospital nearby that is rated with higher success for angioplasty procedures. Supposedly, they are on the same network that they can view test results between them but it is obvious that they are very much in competition with them. There was an article about them in Forbes and the healthgrades ranking outlining the superior difference between the local community hospital vs the major teaching hospital.

Thank you again for bringing up some key issues that will have to be investigated further and re-prioritized. Good grief, now I have to get up to speed on a new type of disease. lol Is there a forum like Woman Heart for gastro disorders? I can only hope so!
You've put me well on my way to digesting this. Sorry for the pun.

My boyfriend thought the same angle as you about the fever though not as articulate and specific with the medical terms.

I guess I watch too many House episodes where they work on brainstorming as a team to find solutions! My friend is old school and very submissive and thinks it's alot of wasted energy when we try to control things when it is God's divine plan that will decide outcomes. It's a tricky balance...when to surrender and trust.

I am careful not to think I know more than a doctor but I do expect them to respect my questions and concerns and not to become defensive about it. I think a new type of patient is emerging and they better be prepared that some of us like to make "informed" decisions. Call us "control freaks" if you want but we were blessed with brains and we want to use them. Yes, it takes longer to deal with patients like us but we have a right, in my opinion.

Thanks for helping me work through this. I hope to someday help others like you do and pay it forward.

Heart disease is the number one killer yet their fundraising is not equal to that for cancer. I'm not sure why but maybe I can join the campaign and try to change it. We need more resources in both diseases.

I'm rambling again so I'm signing out!

KK

By martzj
Posted March 23, 2009 at 1:15 am
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'Her humility and pride is tied into controlling her diarrhea. She has been concerned herself about taking the Immodium that frequently. They told her she is safe if she takes up to 8 per day. I'll have to find out how you got yours under control. We were just talking about that tonight! She said she would like to figure it out after her heart matters are cleared up."

Because she was not a known heart patient during the years she was taking Immodium, it is possible she was able to tolerate the side effects with little problem. A damaged heart, however, means all her former meds need to go under new scrutiny, by all her different doctors.

You are so right....there is a huge learning curve here! But women's heart diseases cover and blend with so many other conditions that it can be super confusing....even to the experts. Keep up that great vigilance regarding your mom's care....Hard to do, but you may find doctors a bit more receptive to you if you pick your battles....As long as you never forget you are dealing with a for-profit system, you will be able to question doctors for answers to problems that are most bugging you. I'm assuming she has been checked for anemia? (caused by many things, one of them chronic gastric bleeding, and bleeding can arise within 3 weeks of taking NSAIDS (ibuprofin, Alieve, aspiring) These meds can burn tiny holes in the stomach lining that is devilishly hard to repair...but it is a self-repair process so that means there are your need to come up with creative/ flesxilbe things you and mom.

Not to sound like a broken record, but the sourse of your mom's bleeding needs to be assessed and treated in some way.

best wishes to both of you (Know how difficult it is to be the 'child' in charge of all this)
Jaynie

Many women here have a whole lot of other body health issues, which further complicates things for all. So don't ever worry about bringing any issues up...someone here always has advice and sympathy.
You are not alone here.

Let us know how its goes KK,
Jaynie

By kk_stl
Posted March 23, 2009 at 2:13 am
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Wow, such great advice about picking your battles! That has been a lifelong learning process for me. lol

The bleeding problem is sounding hauntingly familiar now. My mom was hospitalized some 30 years ago and they couldn't find the source of her anemia after doing an upper GI. I think she caught the mumps which turned into encephelytus (sp?) or it was after her partial hysterectomy, one of those two.

She must have developed a hiatus hernia later on when they found it last November. I remember reading some post about a sliding h. hernia and the problems it could cause but I'd have to find that again. They say hers is large and about a quarter of her stomach has pushed past the diaphram into her esosphogus so she now takes omeprazole.

I honestly don't know how long she has been anemic since it's only been recently that I've been checking her blood tests.

I was surprised to find her red blood cell count slightly down in 2008 (3.75). I had made her demand to have blood work done. It was the first one her doc did in 7 years for her. I still can't figure that one out but that is ancient history now. MCH was also slightly elevated on that test.

I was wondering why they aren't testing her stool for blood routinely now but I've done no reseach yet on gastro disorders and blood work. I'm worn out just thinking about delving into it.

I'm happy to report her blood work in February showed no problems in her cbc or comprehensive metabolic panel. She had to get her blood tested on Saturday to prep for the cath test so I'm interested in seeing if her blood count is down from the bleeding.

BTW...My sister's doc found out she had a B-12 deficiency and we remembered our grandma had that problem too. She is also anemic and has other problems that might be related to that. She's been to a cardio, neurologist, chiropractor, and orthopedic for a host of problems that might be related to this deficiency! Her primary care doctor discovered it. She has a mountain of diagnoses from the specialists. I'm glad her PCP is looking at the whole picture like he should be.

I'm wondering if geriatric doctors are more passive in their quest to get to the root cause of problems and just putting on bandaids to control the symptoms. Here I thought we'd be in better hands with one but now I'm starting to wonder about that.

Well, I digress once again...lol

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