Angiodysplasia / nightmare update

[harrietW]

Hello friends and here is an update to this nightmare Angiodysplasia found in Aortic valve patients although it is a mystery it has become my biggest nightmare. So here's for the update as some of you do you know I have been bleeding internally now for 3 months since open heart surgery. And in this moment l could not be any more upset. After taking 2 mths to diagnos and explore including 6 hospital stays multiple tests and procedures several trips to the Emergency room infact hospitalized at least 8 times with 6 blood transfusions and countless Unsuccessful attempt to stop the bleeding here I sit. Let me tell you what happened to me today. I was admitted this morning for a Double Ballon Endoscopy at the Foothills Hospital in which up to include the second they sedated me. I awoke out of anesthetic with a blood curtailing screaming begging them to stop just stop l can't stand the pain begging them for more anesthetic. To which they reply We're almost done we can't give you more anesthesia we are at are limit and your blood pressure is to low we can't. They continue to Aggressively continue the procedure as I'm screaming and screaming and screaming for them to stop which they did not they continued as I drifted in and out of consciousness. With at least 2 or 3 nurses holding me down trying to shush me. At the End of the procedure I asked them at least did you get what you went in there for the answer no we did not we could not reach it. I am furious l was scream and yelling and crying and in unbelievable pain. My inside are so sore l can hardly walk and every bone in my body is aching. I am at home in my son in Calgary at the moment. I was in hospital for 10 days in which a endoscopy through the throat was preformed and the bleed in the jujunum was stopped most all meds were stopped and l was sent home on 16,000 anti-Xa perday and very limited other meds no asp81 and no warfrin now for about 10 days ... So here we sit again the goal was today to reach the bleeds in the small intestines which of course we did not. I left that hospital absolutely irate! !!!
I ask the doc why oh why wouldn't you stop or give me more sedation. . My BP is always low infact a week or 10 days ago l lied in emergency with a 48/32 seriously !!
So l don't know where we go from here besides l wanna Sue the s*** out of them. Honestly Waiting for my internal medicine doctor to call me. And l wanna try and get in to see my OHS Surgeon here before l leave Calgary.
Angiodysplasia is random bleeds that start and stop with no rhyme or specific reason. But are life threatening to a valve patient on warfrin ect. Is this what my life has become. .. again l regret having aortic valve replacement and mitral valve repair on Jan 5th 2016

 

[harrietW]

This has literally been the worst 3 mths if my life ...
Honest to God l am so unbelievably upset right now. I complained about bleed ever since l was diagnosed with valvular heart disease. . 3 yrs ago ! And here we are 3 yrs and 3 mths later dealing with Angiodysplasia a complication of Aortic valve stenosis in Aortic heart patients. My internal organs are so sore and tender from changing meds diets being constipated caused by bleeding apparently and doing flushes every week for a new scope up one end or the other. Needles and intervenes which today the guy took 4 attempts to do an I V my veins were bursting! !! I have had it .
Rant over !!!

 

[Paleowoman]

Dear Harriet - first of all I'm so glad that you've been able to post your message to us. I can't believe how hard this must be for you with all you've been through and are going through. But secondly, I am so upset for you and so angry with the way your treatment has been handled. I know sometimes that people wake up when under anaesthetic, or when under twilight anaesthtic which isn't sufficient to deal with pain, but there are protocols for hospitals to handle the trauma of that.

But also I'm angry for you that they didn't discover this Heyde's syndrome before you had your aortic valve replaced as I've been reading up about it and it seems in Heyde's syndrome they normally perform tissue valve replacement rather than mechanical replacement because of the certain need for warfarin with the latter which complicates the bleeding angiodyplasia. What do your cardiac surgeon and your cardiologist say about the management of this ? You told them you had bleeds when the aortic stenosis was diagnosed three years ago ! I hope these doctors are talking to each other, and that the hospital that did the Balloon Endoscopy are talking to them too. Perhaps your internal medicine doctor will. It seems that you have been in different hospitals, different docs, they need to be talking to each other about you and your management. But you are not well which makes dealing with them and standing up for yourself very hard.

I'm not surprised you are ranting Harriet. I am ranting for you over here.

Take care, Anne xxx

 

[pellicle]

Rant well deserved Harriet

I agree that you should consider some legal action, from where I sit its just been a "comedy of errors" ... albeit a black comedy.

But are life threatening to a valve patient on warfrin ect.

Is this what my life has become. .. again l regret having aortic valve replacement and mitral valve repair on Jan 5th 2016

Given that history I did wonder why they were not suggesting tissue to you ... to be honest I'm staggered. Speaking as one who commonly is thought of as saying mechanical only, I always say that "without mitigating factors" ... your gastro bleeds are about as big a selection away from mechanical as I can imagine.

I would definately be getting legal counsel on this.

I hope things turn around soon for you.

Best Wishes

 

[JulienDu]

Harriet, you are fucking brave, and sue the **** out of them if you have enough energy because they knew you had bleeding before surgery. Like Pellicle said I do not know why they gave you a Mechanical knowing that you had chronic nose bleed and blood in the urine before surgery. And do not let your surgeon bullshit you when you see him. In Alberta Health Care, every information about you and your history can be accessed by any doctors through internet, there is no way he could not have seen you had bleeding history, it was his jobs to check it.

I really hope things can get better for you.

 

[harrietW]

Yes folks l think next week l will seek out legal counsel. Frustrated beyond all measures. Bleeding was mentioned several times during this 3 year process .. not like it was a new topic on January 5th several medical professionals including the anesthesiologist suggested dealing with the blood in my urine after surgery including when l was at my Dec 8th preoperative consultation. I did see a nose throat and ear doc for my nose bleeds which randomly stopped just as they started after 3 yrs and just before surgery. . I also mentioned several times to several doctors of the quarter size blood clots that l randomly coughed up over a 3 yr period. It was actually my Lung doc that did a scope as he was afraid it was my lungs so he did a biopsy. This whole thing could get very very interesting to say the least. However sad part is it is at my expense. But in the end might just be at theirs.

 

[honeybunny]

Oh, God, Harriet! I can't get close to imagining your level of frustration. And to not have the issue resolved!! Definitely seek legal advice, if nothing else than to force them to give you the proper treatment in a timely manner. That said, it is so good to hear from you. thank you for taking the time to post. Sending lots of hugs and prayers your way.

 

[MethodAir]

Shocking...but you are here and your spirit seems strong Harriet. My own nightmare with the BC Health care system may be a case of criminal negligence. There is no medical basis to support the action that was taken, and it nearly cost me my life. One third party medical professional said that anyone older, or with a weaker heart would have been a goner.

As always, I wish the best for you.

 

[pellicle]

.... My GP has said that anyone older, or with a weaker heart would have been a goner.

which is in my view how many quacks cover up their mistakes ...

Its ironic that the new Gold Coast hospital is built exactly beside the cemetery (google it if you don't believe it).

 

[MethodAir]

which is in my view how many quacks cover up their mistakes ...

Its ironic that the new Gold Coast hospital is built exactly beside the cemetery (google it if you don't believe it).

Haha...I believe it. In my case, the only rational explanation as to why I was denied urgent medical care, was that the cardiologist who was assigned to me was angered by my questions in our initial consult, perceiving them as a challenge to his 'almighty presence'.

Sudden Stage 4+ congestive heart failure after a botched heart cath shortly after the consult (that destroyed my bicuspid aortic valve), and instead of giving me an echo, decides that the problem is 'psychological'. He calls in a shrink 4 days later (by which time I'm in total organ failure (heart, lung, kidney, liver))...the shrink asks me to 'describe my relationships with women'...open heart surgery the following day...

The extent of the concern of the nurses 'working under/railroaded by' the cardiologist' was to offer me a cough drop.

Harriet, you may want to request your medical records.

 

[pellicle]

Note to harrietW

Harriet, you may want to request all of your medical records.

if you do request these take a decent (really seriously) camera along and photograph every record. No bullshit phonecam blurry can't read the print rubbish, I mean good quality. Something with Optical Image Stabisation. iPhone 6 are acceptable, many are not. Request privacy for viewing them (don't mention the camera).

why?

because after you read them they just may "go missing" so if you've copied them and they're unreadable then the jokes on YOU.

I was warned about this from inside the establishment if I chose to go down that path with mine. I didn't.

Call it insurance.

If you don't have a camera I suggest a Panasonic LX-5 .. you can get them used from KEH in the USA for not much more than $150. One of my mates (who works in the Finnish National Library where I used to work) uses one (upon my recommendation) for photographing old historical records which can not be transported. One last point turn the bloody flash off. Nothing screams louder that stuff is being copied than a series of flashes. Its because of the "no flash" that I was pointed in my suggestion of Optical Image Stabilisation.

 

[MethodAir]

Note to harrietW


if you do request these take a decent (really seriously) camera along and photograph every record. No bullshit phonecam blurry can't read the print rubbish, I mean good quality. Something with Optical Image Stabisation. iPhone 6 are acceptable, many are not.

why?

because after you read them they just may "go missing" so if you've copied them and they're unreadable then the jokes on YOU.

I was warned about this from inside the establishment if I chose to go down that path with mine. I didn't.

Excellent advice. Mystery edits/revisions were made to my files after I contacted medical authorities (before I had a chance to read them).

 

[AmyBL]

Harriet - I would be infuriated in your situation. If you hire an attorney, it might be helpful to find one with significant medical knowledge. An MD JD,

Amy

 

[harrietW]

Hi guys thanks for all the advise. Pellicle MethodAir JulienDu Ladies
I actually have a physical copy of all my medical records up to a year ago ... most all of them l believe has l need them for another purpose. I have witnesses when l went for my pre op and other appointments where bleeding issues were discussed. I have tons of discharge papers and my surgery paper work and so on. Here's the thing l don't know where to go from here or what is going to happen next and l sure don't want to Jeopardize any future medical treatment by threatening a law suit. I am not well and l am still in Calgary debating on whether to go to the hospital where my Surgeon is l haven't even been able to do a follow up with him yet or drive back home and go to the hospital where most of my regular doctors are.
Last night l am sre l had a fever and l had Night Terrors waking up several time very shaken and Traumatized over yesterday's events I am terribly upset about what happened. I am weak and a bit shaky and l'm sure my blood pressure is low. I can't say forsure if l am bleeding internally right now forsure or not. I was very swollen this morning and retaining water. I have actually lost about 25 lbs or more since my hospital discharge on Jan 18th.
It was actually the Dr yesterday that is the first to actually talk about angiodysplasia being apart of or result of and seen in aortic valve stenosis patients. The others are all dancing around the connection between my history of bleeding and the valve disease. I am sure l've got a lot of scrambling to do to collect the rest of my medical records from the past year.
I am going to see how l feel come morning. I never heard from my internal medicine doctor but the Dr. who preformed the DBE called me l told him how much pain l was in with some emotion in my voice and there was a very long uncomfortable silence. Ughh !! He had talked to my doctor and they were going to come up with a plan but being a long weekend l don't expect to here anythong til next week.

 

[harrietW]

AmyBL Thank you for your input. I sure hope you are well and that you got through that tough week. Sending you hugs ! Xx hope you are doing well.

 

[Paleowoman]

Here's the thing l don't know where to go from here or what is going to happen next and l sure don't want to Jeopardize any future medical treatment by threatening a law suit.

That's what I was thinking.

When I considered making just an ordinary complaint about my surgeon I felt that it might jepardize my future care, not so much with the surgeon as there's plenty of other surgeons in the sea, but my future care with other doctors who I am under as I wouldn't want to be known as a patient who makes complaints, not while I have ongoing medical issues.

On the other hand, what you've been through Harriet, and what seems to be mismanagement of your issues by not investigating the bleeding episodes sufficiently when you were diagnosed with aortic stenosis three years ago, and therefore not diagnosing the Heyde's syndrome, which meant that you were given what would seem to be an inapppropriate mechanical valve instead of tissue, is a very serious issue as now your bleeding episodes are worse due to the warfarin you now need becasue of the mech valve. I don't know about Canada, but in the UK when there is a complaint to be made or when harm has been done to a patient, there are procedures within the NHS to begin to handle this, including getting compensation without necessarily going through litigation. Perhaps Canada has similar ? I would have thought going through the regular channels may be the best first approach. Do you have a sympathetic GP you can discuss this with ?(sympathetic to you that is, too often doctors, like most professions, pull ranks together) I'm sure there are medical legal lawyers too who would advise how to proceed, and how to proceed without jepardising your future care xx

 

[JulienDu]

It is kind of crazy that you did not have any follow up from your surgeon. He must be a big fat asshole and either he is scared because he fucked up or don't give a ****. That would drive me crazy and give me more reasons to sue his pompous ass.

There could a possibility of going to another hospital if you fear that a legal action could undermine your care. But it also must be hard to change with all the stress and the pain you have right now...

Good luck.

 

[harrietW]

Thank you Paliogirl!
I need to stand back and make some rational desisions. I can tell you there was not rational about my thinking even after that procedure. I haven't spoke to any if my other physicians about what happened or what will happen going forward. My last conversation with my internal medicine doctor was if this doesn't work then possibly they would have to do surgery on my small intestines .
This GI doctor suggested coming back for a endoscopy through the throat with with an anesthesiologist on hand to reach the middle ilof tge sm intestines that way which has been tried but the equipment in Calgary is longer ..
I guess l will have to wait until next week to know.
In the meantime l go for my first Echo since surgery on Monday. Providing l don't end up in hospital again before that. If l can tolerate the presure on my chest and Esophagus Area as l am so tender and sore on the insides.

 

[pellicle]

Hi

That's what I was thinking.

When I considered making just an ordinary complaint about my surgeon I felt that it might jepardize my future care, not so much with the surgeon as there's plenty of other surgeons in the sea, but my future care with other doctors who I am under as I wouldn't want to be known as a patient who makes complaints, not while I have ongoing medical issues.

​This is an interesting point and one which I have been aware of for some time. When reading of harrietW 's obvious issues , significant questions come to mind about the failure of care.

BEFORE surgery we all like to kid ourselves that our surgeon is the best in the world (how many bests in the world are there now?) and that only "other places" have such horrid stories of mistreatment. But how did you determine that? From their assertion? From the small circle of supporters in their sphere of influence? By reading and reviewing case histories?

Most would feel some repulsion of getting their surgery done in a place like India or China, and we think we are in a position of strength being somehow protected by our system against such horrors that we imagine must occur "over there". Yet when such mistakes happen here the actual bottom line is that we do recognise our fragility, we do recognise that the medical system holds all the cards. We do feel like captives, unable to voice a complaint for fear of possible retribution (that being denial of service attack).

It matters not what the reality of such a confrontation actually is, it matters more that the medical behemoth is uninterested in making you feel that you will be taken care of when a problem actually arises.

In my short time here I have read of too many stories of what can only be thought of as a failure of duty of care. I have been a part of helping one member avoid another OHS which of course makes me wonder how many "oh, its buggered, you'll need a new one" valve replacements occur "out in the wild".

I can't recall his name, but one surgeon fought a battle which almost cost him his career in the UK to get performance metrics instantiated. I find the wording of this report validates the concerns expressed here:

http://icvts.oxfordjournals.org/content/12/4/586.full

The responses demonstrated that whilst the majority of cardiac surgeons (68.8%) were initially opposed to performance tables, the number welcoming their introduction increased significantly (22.9–48.5%) over the four-year period.
...
The observed change in attitude of cardiac surgeons may be due to acclimatization to an established system of audit, improved mortality rates, a desire for more transparency following the Bristol Enquiry, or improved risk stratification.

At the end of the day Surgeons are the ultimate Agoraphobes and will need to be dragged kicking and protesting into the Agora.

For the Agora was a public place where the dealings of public affair could take place in open public scrutiny.
https://en.wikipedia.org/wiki/Agora

Those who fear scrutiny usually have something to hide.

 

[harrietW]

JulienDu how are you lol
In defense of my Surgeon l will say this. I had an appointment to follow up 6 weeks after surgery and before that happened l ended up in emergency and hospitalized for 3 week in what was thought to be an unrelated issue at the time. They didn't know what the problem was or where it was for several weeks later. I had to call and cancel that appointment. In the meantime l have seen several doctors and to other cardiologist. Remember or at least at my hospital here in lethbridge not any doctor can come in and work out of the hospital. There are designated on call doctor and all other doctors are restricted as of about 2 or 3 yrs ago now.
We were trying to get to the bottom of and figure out how to stop the bleeds as l have been in and out of hospital now for 2.mths post surgery with only a couple days in between visit. I can't jump all over my Surgeon l met him once pre surgery. . I saw a team of 5 or 6 other doctors that were communicating together over a 3 yr period prior to surgery that would be in all likelihood more responsible. However l will also say every doctor involved has made this statement to me . You are our most perplexed case. And in every single report talks about my complexes history. So l really need to be careful about who l blame and who takes responsibility. That's why legal counsel and advice is so important. I honestly don't think one of these doctors has Intentionally done me wrong ... However the liability has to lie somewhere.
I am more upset today with the unreasonable pain l endured during the DBE the other day it was unbareable and tramatic! ! Even then according to the GI doctor unexplainable and during a recent Colonoscopy 3 weeks ago the same thing happened l woke up for a minute but very quickly went under again . They used the safe limit amount without causing heart failure or having my kidneys shut down. I honestly don't know what to say except l would agree with pelicle A comedy of errors unfortunately l am a complex case . And l will say my Surgeon and my large number of doctors all have very reputable reputations. Some of the best in their fields.
I need to do what l always do and that's take a step back and get some rest . Yes l have been between 2 hospitals and although the treatment hasn't always been 5 star l don't know that anyone is intentionally out to get me .. but l want to continue to be treated with the best possible care and judgment under the Circumstance. I don't know how things have gone so wrong.