Surviving the nightmare ✌

[harrietW]

Pellicle Dear God l cannot imagine what you must of gone through. The mental anguish for me has been as tough as the physical. Gosh if anyone knows the pain and suffering of multiple surgeries and complications it gotta be you. Thank God its over and life is back to normal whatever that is. I know that every time we go through a life changing event it changes us. I know that this last couple of months has most curtainly changed who l am in many way of course some not known yet as l head back into the real world again. I've learned many valuable lesson about myself but even so about the ppl around me and in my life some of which in the last few mths have been hard leasons.
I am really glad you made it through all of that Pellicle Xx incredible! !

 

[harrietW]

Paliogirl thank you ! I am in awe today it's gorgeous here and nothing sooths my soul like a little sunshine.
Yes where is House when you need him lol l will say l am pretty blessed with my team of Doctor even thou l've left them stumped my doc of internal medicine isn't going to let it go until he is satisfied or find the answer. I see him Wednesday. I was pretty sore and tired from the short trip home and driving for the first time so l literally did nothing yesterday had a great sleep and l feel pretty amaz today.
Xx ❤

 

[harrietW]

Honeybunny l am so so happy to be home. My studio is literally 3 blocks from home l book my own appointments and schedule as l feel most comfortable. Last March is actually my bussiest time of year so l'm thinking after l see my doc on Wednesday l will get back ln the chair. I am sure that after being gone 2 mth it will take some time to build my business again so slowly lm sure. But l can book 2.5 hr appointments even just one a day for the first while as to not burn myself out. Last yr l never saw the light if day all mth. I hope l still have a few loyal clients. They do drive an hour or 2 to come see me ... lm blessed !
Thank you for your support alway and hope you are well. Did you get ride of that fluid?
Best wishes and much love Xx ❤

 

[AmyBL]

Hi Harriet,

Big sigh of relief. I am so happy to hear that you are feeling better and the bleed stopped. How did it go with the Internist?

Amy

 

[harrietW]

Hello AmyBL nice to hear from you !
My internalist appointment was cancel today as he had emergency surgery.
I drive to Calgary tonight or in the middle of the night to be there for a capsule endoscopy / pill cam it's a 12 hr test taking 77,000 pictures as the camera (swallow a pill cam ) travels through the gastrointestinal track from esophagus to intestines.
Apparently they did find something in the small intestines but was inconclusive as the previous scope could not reach fir more detail.
Although my blood levels were stable when l was discharged Friday night doesn't nessesarly mean it will stay stopped .. they are definitely very concerned and aren't going to stop until they find the source or bleed. I am in quite a bit of pain and discomfort. And have not felt great since discharge. I day l felt great Sunday .. but every time l eat l experience alot of stomach pain tenderness ect. If they do not find what they are looking for through this test . I will be admitted to Calgary for a Ballon test l just wanna get on with my life and it didn't include all of these complications after OHS .
I kind of scared if l wanna be real honest. It is apparently not common for small intestinal bleeds. It could be a twist but regardless the continue to talk surgery to fix the problem but need a exit source and diagnosis.

Thank you for your concern Amy ! I sure hope you are doing well l have been very negligent in keeping up communication with people that l care are doing well.
Much love Xx ❤

 

[Nocturne]

Best of luck to you. I barely understand what you are going through but it does not sound pleasant.

 

[harrietW]

Nocturne thank you !
We are all fighting a battle that's hard for others to understand. That is why l come here its kind of a life line for me right now. And has been for sometime now.
Xx sweet of you to send you best wishes thx u

 

[ottagal]

HarrietW,
Although I haven't posted much, I have been keeping track of your 'journey along with the health challenges" post-op. Will continue to keep you in my most positive thoughts and prayers that this 'nightmare' will soon be in your rearview mirror.
Hope they get to the bottom of things for you in Calgary.
Best wishes,

 

[harrietW]

Ottagal that is so kind thank you !!
I wish l was posting positively and although l feel alot of gratitude right now and feel the answers will come. This has not been my experience throughout this journey. Thank you for your positive thoughts and response to this post. You've been around awhile l see. Thank you for that as this forum is built apon members such as yourself and others who travel this journey before us. Xx

 

[harrietW]

And the nightmare continues !!!!!
I actually drove to Calgary at 5 am thus past Thursday to have my pill cam endocoscopy. All seemed to be going great although l wasn't feeling the greatest nevertheless l made it swolloed the pill wore the receiver and returned it the next day (Fri ) @11 am as requested. Picked up lunch went and saw my mother in the new care center across for the new south campus hospital and helped her with her laundry. I was so exhausted and short of breath from the moment l woke up Fri by the time l finished with my visit and lunch which l couldn't eat is all l wanted to do was get in the car and start my 3 hour journey home.
By the time l got close to home (lethbridge ) l had bawled the last hour and half of my travels pulled into town and went directly to the emergency department of the hospital. Man oh man only to find out my blood hemoglobin had dropped yet again. I was admitted and receiveD my 4th blood transfusion so a total of 9 bags in all plus 5 bags of plasma .. that is insane to me. No answers no known explanation and one very unhappy post op patient.
I checked out today ..they wanted me to again spend the next 2 weeks awaiting pill cam results in hospital ... l just couldn't do it. I was wrong for checking out but l am tired. Call me when you know something. I will probably end up back in hospital within a few days.

 

[JulienDu]

Harriet, you should go to the Mazankowski Heart Institute in Edmonton

 

[harrietW]

Hi JulienDu How are you ?
Here's the thing about that Julien is that non of these complications that l am experiencing now are heart related. It's stomach abdominal and intestinal. The issues is probably pre existing and complications now because of the blood thiners ie heparin and Warfarin. The fear is clotting the posibility of stroke with the new mechanical valves. But it's not actually the heart it's the New Thinners is the Mole.
I see 4 doctors this week coming plus hopefully findings in the pill cam endocoscopy. . SO I NEED A LITTLE MIRACLE.

 

[JulienDu]

Yes you'r right. Did you talk to your doctor about targeting a lower INR range. Many tests have showed that you can target a lower INR with most of the last generation valve. The ONYX can target 1.5-2 BUT with aspirin. Other studies have shown other valve doing great without Aspirin at 1.8-2.4 (1.5 with the ATS) and it was slightly reducing bleeding event for higher risk patients. I think it is worth talking about that with your doctors just in case it was not mentioned.

 

[Paleowoman]

Oh dear, poor Harriet You definitley need a VERY GOOD doctor to discover out the cause of the bleeding (or red cell destruction). You can't have blood transfusions every few weeks and they do know that. Please keep us posted when you get a moment and the energy {{{hugs}}}

​PS - I see from the website about medications for health professionals that one of the side effects of warfarin itself can be haemorrhage: http://www.medicines.org.uk/emc/medicine/21562 (copy link and scroll down to section 4.8). Your docs have quite a puzzle

 

[djacq]

Harriet, I just saw your story and as I had a "scare" last year, I can so relate to what you are going through. You live in a state of exhaustion and apprehension. I am glad to see you are getting about and you are getting good MDs. I still have up to 18 iron infusions a year for bleeding issues but my heart is holding up. My thoughts go out to you with the hopes they find the cause of your problem. These bleeding, clotting problems seem elusive in nature. Looking forward to your follow up posts. Hugs to you.....

 

[carolinemc]

pellicle, that inofrmation about Coumadin(warafrin) is totally wrong. I am on warfran and been on it since I had surgery at 36 years old, no blood clots, no strokes. I am now 51 years young and still doing fine. Yes there are risks, like liver damage, bad for me as I am also a type 2 diabetic. But ot scare someone from Coumadin, you need to get more educated than one magazine article. Coumadin saves more cardiax patients when they have a stoke or heart attacks. Pleas be sure of the information on certain drugs. We do not want to discourage people from taking Maitenance drugs.

 

[JulienDu]

pellicle, that inofrmation about Coumadin(warafrin) is totally wrong. I am on warfran and been on it since I had surgery at 36 years old, no blood clots, no strokes. I am now 51 years young and still doing fine. Yes there are risks, like liver damage, bad for me as I am also a type 2 diabetic. But ot scare someone from Coumadin, you need to get more educated than one magazine article. Coumadin saves more cardiax patients when they have a stoke or heart attacks. Pleas be sure of the information on certain drugs. We do not want to discourage people from taking Maitenance drugs.

??? What are you talking about. Where did Pellicle mention anything like that...If he needs to be more educated then you need to learn how to read.

 

[Paleowoman]

Hi Julien - I wonder if carolinemc is referring to my post above where I posted a link to the Electronic Medicines Compendium (for UK health professionals) ? I can't see any links to any magazines, and none that Pellicle posted !

Carolinemc, if you are reading this, you should read back over this thread of Harriet's from the beginning where you'll discover that since heart surgery she has been having very serious ongoing problems concerning bleeding from an unknown cause for several weeks necessitating being hospitalised and having blood transfusions.You'll read her docs are trying to find the cause. I posted a link from the Electronic Medicines Compendium for UK health professionals ("The electronic Medicines Compendium contains up to date, easily accessible information about medicines licensed for use in the UK. The eMC was launched in 1999 and has become an established website, trusted for reliable information about medicines"). This is not to scare Harriet. Harriet is already scared. Her docs will find the answer to her problem but it is not proving easy for them, nor for Harriet.

 

[pellicle]

Hi

pellicle, that inofrmation about Coumadin(warafrin) is totally wrong. I am on warfran and been on it since I had surgery at 36 years old, no blood clots, no strokes. I am now 51 years young and still doing fine....

I confess I'm totally confused , what are you talking about? As one who has since I joined this site only attempted to dispel the BS and Myths about warfarin I'm confused what I have said that could be construed, twisted or distorted into suggesting that I have supported anything like what your rebuttal implies I've said.

Try reading my blog where I advocate for how to effectively monitor yourself and self regulate your INR

http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html

I have been lambasted and derided here for my support of mechanical valve being a wise choice (for specific groups) based on the fact that the demonisation of warfarin is false and unsupportable. Now you come along and accuse me of suggesting the opposite of what I've argued consistently for years now?

Like wahaat?

I have spent a lot of time assisting people to manage their INR over the last few years and then you come along implying I'm saying warfarin is the cause of "blood clots and strokes".

What are you smoking? I want to avoid it

PS: has someone hacked my account and switched all those journal refs to "Womens Day"?

 

[Paleowoman]

And the link for health professionals I posted said nothing about warfarin being the cause of "blood clots and strokes" ! Weird !