Not one thing but another

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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Ozchrissy
Posts: 7279
Joined: September 27th, 2008, 9:28 am
Location: Australian

Not one thing but another

Post by Ozchrissy » December 4th, 2018, 5:37 am

I am talking to the converted and especially Helen, you will know where I am coming from

As most of you know I had oesophageal cancer 6 years ago, did the big Operation and chemo and got the all clear. I STILL HAVE NO SIGN OF CANCER, BUT, what is remaining of my stomach has developed into a very large Hiatus Hernia. Not a bloody thing they can do. kick butt I have put up a photo just to indicate what my anatomy looks like inside,
images.jpg
Apparently there has just been a conference in which this very thing was discussed that my surgeon has just got back from. My whole stomach now is a hiatus hernia. I have been started on new tablets, HOPE TO HELL THEY WORK, and having a down the throater on the 17, and if I don't get an improvement from the tabs they may put in a feeding tube to bypass this mess. I am on 4 stomach pills and pain pills at the moment.

If I don't find that things have improved either with the tabs, best scenario, or the feeding tube, then I really am not prepared to struggle on with the symptoms of this disease. I throw up all night with reflux, (bile acid), as a result it causes congestion in my lungs as it flows into them too, and I have bad pain throughout my trunk area. I have never felt this sick. That magic off button might just be set. I am limited to eating watery soup and Sustagen, and my weight is way underweight. No energy and as you might have noticed, I am a bit depressed. My tablets are all out of control, as I can take them with a glass of water, and the next thing they are up again. Can't even work out what is what as so much acid in the spew.
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“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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mykidsmom
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Joined: February 9th, 2012, 5:09 pm

Re: Not one thing but another

Post by mykidsmom » December 4th, 2018, 8:44 am

OMG chrissie.....first.......... :big-hug: :big-hug: :big-hug: :big-hug:

I dont even know what to say to you...its just too too much...yer man up there in my estimation has a whole lot to answer for....why......why cant these blooming things be shared around...evened out...its not fair.....it really isnt...you get thro one thing...accept the new normal....think ok now i might be coming thro this...then another kick in the gut....from out of left field generally.....I really hope the meds work chrissie...you need something to keep them in your stomach...so really is taking them by mouth going to help..you know you are a strong fighter...and you'll continue fighting...but it would be so good and nice if you got a fecking break...I really hope they can find some way around this for you....what did they say with the pain ...are they able to help with it??? and of course your depressed..how in the name of god can you avoid it.......

love you so much...just want to see you catch a bloomin bloomin break in all this.....hopefully by the 17 something will have worked with the meds too......hang tight chrissie...its another bloomin bump and hole in the road....and you'll get past it........x0x0x00x
I think.....Therefore I am.!!!!!

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luvmydogs
Posts: 165
Joined: April 28th, 2016, 7:05 pm

Re: Not one thing but another

Post by luvmydogs » December 4th, 2018, 9:28 am

Chrissy, so sorry to hear it's only getting worse. Life certainly is not fair. Hoping for things to turn around for you soon. Time for you to watch some comedy on the tv to get some good laughs. Laughter takes your mind off things for a while. Maybe old I Love Lucy reruns?? Take care.
Joanne (aka Jo)

Grammaram
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Joined: May 30th, 2014, 10:37 pm
Location: Eastern Pennsylvania, USA

Re: Not one thing but another

Post by Grammaram » December 4th, 2018, 9:32 pm

So sorry you have to go through this! I have a hiatal hernia, which, when aggravated, can be beastly! I can’t imagine what it is like for you to have that constantly consolsmile
There is another condition of the stomach in which food just doesn’t move through (I think it’s called gastroparesis - has to do with the nerves in the stomach). For those that have severe cases, it is usually necessary to bypass the stomach entirely and just put a feeding tube directly into the small intestine. This sounds like it might be the best of options for you - at least for sustenance. Really hoping the tablets work for you!
You and I are going through a time of adapting to changes (but after reading yours, mine seems inconsequential!) As you know, I had a major heart surgery back in March. I developed a bleed in my heart (from scar tissue tearing away), and had to have a second emergency surgery shortly after the first; in all, almost 9 hours of surgery. I was kept on the ventilator for 2 days, and treated for pulmonary vascular disease for 5 days (special infusion to keep the pressure in the lungs low.). The doctors (and my) hopes were that the surgery would improve my functioning, but it seems that is not to be. My mitral valve is now leaking considerably, and my left ventricular function has worsened. My lungs took a hit, and pulmonary function has declined (restriction - unable to fully expand lungs). The result is that I have a very difficult time with any exertion.
On the good side, my arrhythmias have been behaving and the new valves are working great. I try to get out to a local resort (the Pocono Mountains where I live is loaded with them!) and go “swimming” (more just water exercise), as that is the easiest form of exercise for me.
I need to use a rollator if I want to go walking or shopping - seems to help with breathing if I have something to hold on to.
Sorry to unload all this; I’ve just been struggling with this “new normal” and just wanted you to know you are not alone.

Margaret wavhi
Congenital Heart Disease - Tetralogy of Fallot - repaired Sept. 1966
Medtronic Evera S DR Implanted May 22,2014

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Ozchrissy
Posts: 7279
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: Not one thing but another

Post by Ozchrissy » December 5th, 2018, 6:01 am

dancehearts dancehearts

Please do not apologise for unloading Margaret, it makes me feel better. Today I have been contemplating all the other people out there who do have far worse issues than me, and it really has helped to pull me up and move on. The idea of the bypass of my digestive system in in the works. I see the team next week to work this all out, and hopefully find a direction. The idea of a feeding tube is very appealing, I have had that done before when I had the surgery, and although it was painful where they anchored the tube, I coped pretty well. And of course that is a positive way to ensure my pills get down At the moment, some stay down but others are straight up. The new pills seem to be improving the situation, but I am still plagued by mucus and bile in the morning. Also the heave hos. The pain when I do eat anything, for example I have just eaten 1/2 a banana very slowly and the pain has hit with a vengeance. moodbad I do have pain meds, Endone, and am trying to stop myself at the moment to take my second.

I last weighed myself two days ago, and really haven't eaten since, and I was 8 stone. At 5'7" I really cannot afford to loose anymore weight.

I did a bit more google searching and found that I am not alone in this, apparently 1/3 of long term patients have had this happen. I looked up "Ivor Lewis Procedure and hiatus hernia" https://www.annalsthoracicsurgery.org/a ... 1/fulltext" and there are a lot of journal articles on it. And no I didn't look at the dates. I didn't see my surgeon, he was operating, but the young spunky new one had just returned from the land of the bald eagle And he attended a conference on Oesophageal Cancer and it was the talk of the conference. Nothing they can do to fix it as they caused it he said. Apparently they did not expect us to survive this long. (6 years for me) CHIT CHIT CHIT

I am doing the grazing all day at the moment, hoping that it would help, but after this last banana half, not sure if that is even working. Will just have to wait and see what tomorrow brings.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

Stella Blue
Posts: 57
Joined: March 29th, 2016, 10:36 pm

Re: Not one thing but another

Post by Stella Blue » December 6th, 2018, 9:13 pm

Gosh, we are having a rough December on the Message Board - your terrible situation, Leah's grandmother, Robo's falls - I feel like everybody's really due for a break. At our house, we've been struggling with a new problem. Our 16-year old daughter became very depressed (we thought) in September and had to leave school after a couple of weeks. After bouncing around between GPs, psychotherapists and psychiatrists, the psychiatrist realized that something didn't make sense and sent her for an EEG. Turns out she has a wierd form of epilepsy where she stays awake during the seizures and experiences hallucinations, out of body experiences, deja vu, etc. It took weeks to get her in to see an epilepsy specialist and we were so happy when she finally received any anti-seizure drug last week. But after five days, that drug sent her into a massive suicidal depression (all these drugs carry those warnings, but I guess they really mean it). We're seeing the epilepsy doctor again on Monday and his advice was to just keep going as it's "only a few more days." Not doing that with a suicidal 16-year old, however, so she's been off the seizure medicine for two days and is much happier. Off to see the psychiatrist today and the epileptologist on Monday, hoping they can find a way to give her some relief.

I didn't mean to hijack Chrissy's thread, but I guess the point I want to make is that, even in this completely unrelated situation, the knowledge I've gained from you all has been invaluable. I've taken on all those messages about dealing straight-on with depression when it hits, and, of course, I've been studying and learning everything I can about this strange illness she has so that I can be a good advocate for my daughter. If the epilepsy doctor is mad because we didn't take his advice to keep going with the medicine, out he goes!

Hope that Santa comes through for us all in the end!

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mykidsmom
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Joined: February 9th, 2012, 5:09 pm

Re: Not one thing but another

Post by mykidsmom » December 7th, 2018, 7:39 am

oh my god it really is a godawful month.....already and its just starting...Im really sorry to hear about your daughter Stella..its beyond stressful..my daughter melanie had similar seizures when she was little.....took a long time to diagnose them they said she was clumsy and uncoordinated....but this was 37 years ago and diagnostic equipment wasnt what it is today...eventually an optician diagnosed her.....she was 5........the medications sucked...it took a while to sort out a medication that worked and the side effects of some of them were unreal...I hope all goes well and things settle down for you....Id take her off the meds too if the side effects are excessive, knowing now what i do about them until shes seen a good neurologist and specialist in epilepsy.....the half life of some of these drugs though can be long so...id keep a good eye on her...and your right...keep reading learning and watching.and dont be pushed around by the drs....they give anti depressants to combat the side effects of other drugs in elipsey and the antidepressants cause a whole slew of other worse issues.......do a search on SSRI drugs and a search on anything they want to treat her with......melanie was suicidal too and pyschotic on them..and it took 6 months to wean her off......wishing you guys all the best my heart is breaking for you your girl is lucky she has a smart strong caring mom to watch out for her.........melanies seizures changed over the years...so shes experienced every seizure on the books...its really only the past 2 years that shes been seizure free and theyre controlled..but introducing a new drug to her mix...even something as simple as a statin can upturn the apple cart......hugs..

so ive no idea why this December sucks so badly i know december is my time for dying, getting strep infections if its going to happen health wise in my house its going to happen in december.....I vote we kick december off the calendar....good luck all...hope things improve for everyone.........
I think.....Therefore I am.!!!!!

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TruckerRon
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Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: Not one thing but another

Post by TruckerRon » December 7th, 2018, 11:10 am

About 35 years ago, long before we had any real health problems, it became obvious to my wife and me that December was not a good month for our family. EVER! Each year we'd travel to her parents or mine or the other for Christmas and end up spending the balance of the holidays into January recovering from whatever bug we'd picked up along the way. Things worked out much better when they came to visit us... they got to take the illnesses home.
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

InSync
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Joined: July 21st, 2012, 10:26 pm
Location: The Edge of America, SC

Re: Not one thing but another

Post by InSync » December 8th, 2018, 10:58 am

I'm so sorry to hear that so many of our members are struggling with significant health events this month. I know you're all a strong bunch, but I wish that resolve wasn't being tested.

Best wishes to everyone. or
God bless us every one.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

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