Angiodysplasia / nightmare update

[harrietW]

Pellicle Again thank you!
That's alot to take in and absorb. I will have to reread with a quiet and more rested mind. I just drove 3 hours and home safely .. l was staying at my sons and it is moving day for them so my surroundings after day procedure were also less than desirable as you can imagine boxes everywhere in one place and painting going on in the new place.
Your right somewhere along the line people need to be accountable just as you and l are for our actions.
And not every one is the best and most reputable in their profession. Someone here made some mistakes who l can't say forsure maybe more than one person. Were they intentional ?? ? ? Doctor are human too
I need to rest and clear my mind
Thx you !!

 

[pellicle]

...
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 ..

why are they not using "twilight" drugs such as valium for this? Its what they do here, so you are not anesthetised but you are unable to comprehend things and remember nothing. That's what I had when I've had my endoscopes

 

[harrietW]

Pellicle

They administered for DBE
fetynal 150 micrograms IV , Versed 4 mg, Benadryl 50 mg IV

My last Colonoscopy 18/02/16
Was
* fentanyl
*Midazolam
*Busch pan
Amounts not noted

I've had them also with fetynal always and with other combinations ... Valium not being one of them

My tolerance level on the colon or both Lrg and small bowl even under these drugs is intolerable. . They have to go so deep into the middle of the small intestines to reach the bleeds seen in the pillcam to Cauterize They have been unsuccessful with 4 attempts 2 endo and Colonoscopy including this Double Ballon Endoscopy He tattooed me at 120 cm 47 almost 48 inches ... while l was concious! !!

I was promised deep sedation for DBE and now the dr. Said my BP was 70 and that's to low however that is my normal it goes down from there ..

 

[ottagal]

HarrietW. I haven't been on the forum for awhile I am just catching up on this. What a nightmare situation. It is so hard as patients to have to deal with our own health challenges while at the same time having to address incompetencies of doctors etc. I can only imagine how emotionally and physically drained you are as well. Patients are put in a vulnerable position and the doctors seem to hold all the power. However, this is YOUR life and you have to take action that is in YOUR best interest. Others have given you good advice.
Thinking of you and keeping you in my prayers.

 

[harrietW]

ottagal
Thank you l appreciate that. You have commented a couple of times and l take everything into consideration. I am exhausted to be honest l mean 6 transfusions in a mon the or 6 week who wouldn't be. All the running back and forth dragging suitcases in and out or finding yourself without one at all. I have a small business that has completely left me heartbroken that l can't be at and not sure there will be anything left when l return.
I am far from being recovered and may have a long battle ahead of me. Your right about having been given some good advice. I have some decisions to make.

 

[JulienDu]

Pellicle Again thank you!
And not every one is the best and most reputable in their profession. Someone here made some mistakes who l can't say forsure maybe more than one person. Were they intentional ?? ? ? Doctor are human too
I need to rest and clear my mind
Thx you !!

Your surgeon made the mistake. He was the one taking the final decision and he had access to all your information. Alberta Health Care is a centralized based information where any doctors and nurse can access your information via a portal. Information regarding your previous bleedings were there. The surgeon took the decision for your valve and had no excuse because he had an open access to your file, therefore he is accountable.

 

[harrietW]

Actually JulienDu you are right he did have access we did have a conversation about the nose bleeds which randomly stopped just as they started. He asked if l had blood in my urine and at the time l didn't know for sure that was Sept 22 on Dec 3 Rd l did a urine test at my GPs office on Dec 8th l discussed the results with every single medical professional on the day of my pre op administration including the anesthesiologist and charge nurse. Every single one agreed we would deal with that blood in my urine after surgery! ! At the time l did not know myself the full ramifications of what that meant and what it really meant to be on warfrin. It is also documented for years that l have pernicious enema that l have taken B12 shots for 25 yrs for. And yes l know about the Alberta Healthcare System internet med access. I was born and raised in Albert. . Calgary actually! BUT l also have 2 cardiologist and 2 internal medicine doctors all of which took part in consultations and 3 yrs of testing and pre surgery work up that may have some responsibility here. I have emailed a friend who may be able to turn me onto a great legal advice lawyer. I am going to ask some questions for sure let them decide where liability lies and with whom.
Thx JulienDu

 

[JulienDu]

Every single one agreed we would deal with that blood in my urine after surgery! !

You really need to study 10 years to be that ******** ??!! A whole bunch of doctors saying to deal with a bleeding after they put you on Warafin for life ? That sounds terriblly insane.

 

[harrietW]

JulienDu
Who are you calling ******** me because I didn't know what the real ramifications were or them the professionals ??

 

[JulienDu]

I would never call you like that Harrietw, I am talking about the doctors

 

[harrietW]

Great thx JulienDu
Have a good night !

 

[Paleowoman]

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 should think it unlikely that any doctor would intentionally do something wrong (except the rare mad ones), but doctors have a professional responsibility to make sure that they do not make avoidable mistakes. It would seem that there were avoidable mistakes made because there were doctors who knew you had some bleeding issues before you had valve surgery - they may not have realised the significance of those bleeding issues and that was the avoidable mistake as they should have investigated them more fully which means they have liability for that mistake. As you say Harriet, though, you need really good legal advice. The doctors may be truly sorry, they may not need to be sued for you to get recompense and for you to get better treatment than you've had, and are having, which you deserve xxx

 

[harrietW]

Thanks Anne Xx
Night

 

[MethodAir]

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.

I think bringing them to task can add greater accountability. When dealing with someone unscrupulous, you can become less of a mark when you are prepared to stand up for yourself.

I was lucky enough to have an incredible surgeon who got me back on the road to recovery. But after the nightmare pre surgery (and this is a minor detail all things considered), there was one nurse who I sensed did not respect the weakened, vulnerable state I was in. There was an underlying cruelty and impatience that I felt was prudent to carefully navigate around. It is frustrating, when your faculties are gone, and you have to do that. You really want to smile and say, 'try it, just try it buddy'

 

[harrietW]

Hello friends
Thank you MethodAir for that.
I went for blood today l also went for my first Echo since surgery and will see my Cardiologists on the 4th. I've been so tired and weak and had nightmares for 2 or 3 nights in a row.
I also managed to get a follow up appointment for this Thursday with my Surgeon which will be my first appointment with him as l was in hospital. I have had them send or copy the echo results to my Surgeon and will take all med list and copies of all tests and procedures with me.

On another note l have discussed this with a very good friend who has been in an 8 yr legal battle / law suit over an open heart surgery case. Same hospital same surgeon. Although the surgeon is not liable in that case what so ever. With no end on sight they are ready to walk away because they are just to sick and need ongoing medical care that also consumes there every waking hour. So l have still alot to think about .
This is way different here in Canada than in other countries. Our doctors here are very well protected
They mentioned to me that if l want any kind of life or peace in my life l might reconsider or think long and hard before taking any action.
Lots to think about !

 

[JulienDu]

I agree, doctors protect each other especially in a communist Health Care System like France or Canada. In a private system, it is easier to go after them. Your decision, I would not let this go but I am young and full of testosterone, I would want to make the ****** pay.

 

[dornole]

You are a wise woman Harriet, you have plenty of time to decide about a lawsuit and whether the money or sense of justice (which is all they can provide) is worth it. I hope that you get some opportunity to get your frustrations and concerns heard by your cardiologist and surgeon this week and next. And a decent, nightmare free sleep and more strength would be a blessing too. We all care and are rooting for you.

 

[harrietW]

dornole thank you so much for that ! Truth is I have spent my life searching to find peace. This has been a very long journey not just this past 3 mth or 3 years but many many years of struggling and stress and no peace. I have made a life for myself that l became very much at ease with and comfortable with much joy and happiness and peace. And dispite everything that has gone on here l need to be at peace with my own soul. And l cant let anything include a my current circumstances take away the one thing l have faught my entire life for.
Bless you.

 

[harrietW]

So just a little update. So I had a cardiologist and an internal medicine doctor appointment this week both went relatively well. Status on the post mitral valve repair post op there is a mild gradient so mean 4mmhg across the valve there is moderate concomitant mitral regurgitation. Followup in a year. Doesn't sound to bad but the moderate regurgitation is bothersome to me considering l was so symptomatic for so many years pre surgery just seem only half the problem was rectified. But whatever l get to live with it until l can't anymore. The prosthetic aortic valve is seated well and functioning normally. Atria- left Atrium is severely dilated as pre surgery. All relatively normal otherwise. Just not happy with my new mitral repair and possibly a re do any time in the future.
Next l have been experiencing quite a bit of Arrhythmia. . Fluttering missed beat stops and starts loud runs and so had a Holter monitor on for Thursday afternoon -Fri 24 but if course relatively uneventful.
Ent med docs A decision was made to leave me the hell alone for a bit lol as discussed with my cardiologists Monday. So no more scopes test or procedures for now it's been 25 days or so that l have remained stable just on heparin shots alone. However on the 20th of this month l will see my Ent doc and we will be bridging back to a therapeutic warfrin. At that time l may or may not start to bleed internally due to Angiodysplasia keeping in mind bleeds are random and spontaneous. I just wasn't prepared to do one more procedure until it was absolutely nessesarly. So if l bleed l will obviously have another transfusion and at that time whatever needs to be done to stop the bleed that may include small intestinal surgery.
That is the latest. One day l feel good the next not so much. Spent almost 3 whole days this week lying around resting which really upsets me at 3 mths or 13 weeks post OHS.
Praying that bleeds just simply go away and life goes on. I am quite shocked to find myself feeling empty and kind of sad and some what feeling a bit lonely. Which isn't like me at least in the last 10 yrs or so l've been quite happy to be alone with my own company 2.5 mths in hospital l think has done that to me. And things not healing and recovering as hoped.

 

[pellicle]

Hey Harriet

...I just wasn't prepared to do one more procedure until it was absolutely nessesarly....

I agree, that sounds like a prudent move ... hope things smooth out from here