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General Medical issues thread

Quickstatus

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A bag but technically not a colostomy. When bladder is removed, the ureters carrying the urine needs to go somewhere. So they commonly make an “ileal conduit”
This is a piece/segment of small intestine to which the ureters are attached. And that piece of intestine made into a stoma at the abdominal wall. Only urine comes out. The rest of the intestine is reconnected - this separates the dirty poo from the urine.

A colostomy is the connection of large intestine out to the abdominal wall and empties poo.
 

love_the_life

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Whoops, wrong organ :eek: Thanks for correcting my mis-information @Quickstatus. Don't wish to use either later on in life.
My mother has had an ileostomy bag for well over 40 years now. She has coped with it very well, though in the early days did have some problems with adhesions which necessitated hospital. She can tell if there is a blockage and if she needs to go to hospital though hasn't had to for several years (touch wood). She has a stoma nurse visit each fortnight now as she is nearly 97.
 

coriander

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Carrying on from message #5065....

Ok, today is Day 0......

My final cycle of chemotherapy concluded on Day -41. Pain levels are now manageable but still always there.

Over the following 3 weeks or so, I was examined at the VCCC (Peter Mac) with the most comprehensive set of nuclear medicine tests, blood tests, pulmonary function tests, ultrasounds, full mouth dental radiographs, etc. that I've ever had.

These tests all showed that I was in perfect health, apart from having multiple myeloma but its specific protein which should be <27mg and was 214mg on admission is now <5mg. Yeah! The upshot of all these tests was that a stem cell trnsplant was offered as the best chance of prolonged quality and quantity of life with a high likelihood of success.

Day -25: Now I'm needle-phobic and after 18 weeks of once/twice weekly IV chemo, I hadn't conquered my fear of needles, in fact I was getting worse. The Peter Mac solution was the insertion of a Permacath: a double-lumen indwelling catheter that is inserted under the skin on my bright side upper chest and thence into my right jugular vein and passed down to the vena cava near the base of my heart. Trepidation when they inserted it but Midazolam/Fentanyl ensured that my attitude was "Whee, who cares??? Happy Juice yeah!!!"

Ok. look away now - this is what it looks like.

permacath2.jpg

Sorry, no more graphic photos, I promise.

But this device is wonderful - no more phobia: they can access my circulatory system very easily and with what is to be ahead of me, my arms and my emotional state would not have taken any more repeated cannulation.

Day -22: Admission for IV chemo at 3x previous dosages to stimulate bone marrow production of stem cells. This took all day but was totally painfree/terrorfree due to the Permacath.
Hmm... "why are you giving me this box of injections?"
"Starting 24 hours after chemo you need to inject yourself with three of these injections every evening for at least the next 10 days."

Insert sound of jaw hitting floor.

"These G-CSF hormone injections will stimulate the production and release of stem cells: you may experience some bone pain in a few days but that is good - indicates that stem cells are being produced."
Went home feeling well, interesting that my back pain has completely disappeared.

Day -21: I spent over 60 minutes with the first injection pointing at my abdomen, perspiration pouring down my face, shaking uncontrollably, my fitbit telling me my heart rate was up to 120. I finally was able to give myself the three injections but was an emotional mess. Mrs C arrived home from work, took one look at me and decided that she'll do the injections in spite of her own trepidation and other issues we've been having. So she took over the task - so proud of her rising to the occasion: the chemo on day -22 and the injections have resulted in a huge shift in the relationship dynamic and it's better than at any time in the last 6 months (albeit starting from a very low level).

Day -19: Well I spoke too soon - back pain is back, but I feel like I've got the worst case of jetlag coupled with a hangover (minus only the headache). Lethargy, no appetite (and I normally will eat anything that doesn't bite me first <g!>) and total emotional withdrawal from the family. Oh well they did mention something about pain.....

Day -17: Still feeling off-colour, but at least the hangover/jetlag feeling is gone and my appetite is back. Suddenly at about 7pm every beat of my heart is agony - every vertebrae, shoulder blade, pelvis, femur feels like it's going to explode 75-80 times a minute. Pain level is now WAY up, breakthrough pain control Fentanyl and morphine do little to alleviate the pain and I find I can't sit still or lie down for more than a few minutes without the pain levels becoming intolerable. Walking seems to reduce the pain so I walked around the house, around the block all night. Finally rummaging through the bathroom drawers at 5:30am I found a box of Panadeine Extra - 2 tablets and I was asleep within a few minutes. Bliss.

Day -16: a call to Peter Mac when the pain woke me: - "oh the pain is good, you're producing and releasing stem cells" - and scripts were promptly faxed (people still use faxes?) to my pharmacist for some anti-nflammatory and pain relief meds and the pain substantially subsided over the next few hours. Whew!!

Day -15/-14: Back to Peter Mac for stem cell harvesting. Now this stuff is really interesting so I'm going to inflict a non-confronting photo on you. The process I guess is a little like dialysis: blood is drawn out of my body and into a sophisticated machine that spins the blood separating it into red blood cells, buffy coat layer (white blood cells) and plasma. The stem cells live in about the middle of the buffy coat and are extracted by the machine being identified by a laser beam that selects the stem cells by their unique size/density. Some other white blood cells are caught up in the process so there's about 20% stem cells in the catch. You can see the collection bag to the right of the aphoresis machine (as the harvester is correctly known) with cells and some plasma that had been collected before the harvesting commenced:

blur me and my dalek.jpg

The blood is then returned to me via the second lumen in the Permacath. Harvesting took about 6 hours until they felt they had a good collection. The amount? Imagine about 2x 500ml IV fluid bags full. I went home a little tired but otherwise comfortable. Harvesting continued the next day but only for about 4 hours: they tested as they needed a minimum of six million cells (they felt they got about 4.5 on day 1) and rang me to tell me of their bumper crop - nine million+ cells - their highest harvest this year.

Day -11: Lethargy was back, back pain as normal (moderate) but appetite was still there - dieticians said carbo load and eat frequently so Mrs C cooked up a storm of my favourite pastas. She's fantastic, now totally supportive and comes with me to all my visits to Peter Mac.

By day -7 I was feeling well again, no lethargy, appetite back, happy that I felt almost normal. Friends from uni arrived and took me out to lunch, wanting to see me before the transplant. Fantastic to see who your real friends are. The word seems to be getting out both among my practice clients and the cohort of our graduating year with lots of emails of support - made me tear up quite a lot.

In the evening, the optimist in me went online and secured two SQ J class flights to DBV for May 2020 (right on release even though I have no status with SQ: tried QF but only whY class available as far as LHR, no EK or QR at all even though we're both WP). Go figure.

Day -1: At Peter Mac for a high dose of chemo - this is the one that's designed to completely destroy my bone marrow. Lots of IV fluid therapy both before and after the chemo, lots of pain relief and anti-nausea drugs as well. About an eight hour day. In order to minimise mouth ulceration, I have to keep a mouthful of ice cubes during the whole chemo administration: about four and half hours. Mrs C was kept busy refilling my ice jug from the ice maker machine. Following the chemo, I was admitted as an in-patient for close monitoring and here's my "office" for the next two weeks:

room.jpg

With all the meds I'm on, I'm feeling quite comfortable and pain levels are low / manageable - and that's the way I'll be for a few days until the effects of the destroyed bone marrow manifest themselves.

Day 0: a 3:00am start as the nurse woke me to take blood - apparently this ensures that the results are back from pathology by 8:30am. A few delays for one reason or another meant that the frozen stem cells were not brought to the ward till 5:30pm. The harvest had been divided into a number of small bags and my transplant would be 3.66 million stem cells in two fluid bags.

frozen.jpg

The stem cells were gently thawed in a warm water bath and then run into me via my Permacath over just 4-5 minutes. Then hydration IV fluids for 4 hours. From now till next week I'm on 4-hourly obs and blood tests every morning at some ungodly hour as they watch for my white cell count and platelets to plummet to zero.
This should occur by Saturday - day +3 - and last for about 5 days until my bone marrow starts producing again. It is at this period that I may be quite ill, weak, lethargic, but I'm hoping I'm going to suffer less than the bleak picture the doctors are painting - I guess they have to over mention the possible side effects even though a percentage of people don't have that bad a time. We shall see.
At the nadir of my treatment I need to look for SQ flights home from ATH-MEL; at least I'll be awake at 2.00am or so when the flights become available.
 
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cove

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I am watching the progress of a US colleague who has been getting treated for a melanoma cancer now for close to 6 years. The tumors have been reversed and he is running and bike riding as well as travelling for work.He has had some of the world’s best scientists work out his treatment and it is working.He has been able to keep his senior role in that business so I see there is Hope now for melanoma treatment.
Coriander that was a big report and best wishes from me for posting your positive progress.
 

QF WP

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These tests all showed that I was in perfect health, apart from having multiple myeloma but its specific protein which should be <27mg and was 214mg on admission is now <5mg. Yeah!
Great result!

Now I'm needle-phobic and after 18 weeks of once/twice weekly IV chemo, I hadn't conquered my fear of needles, in fact I was getting worse.
I hear you! Been like that since I woke up in the middle of an operation aged 14. Smashed my anesthesiologist on the wrist because I couldn’t scream due to the oxygen mask over my mouth. A level of pain I never hope to emulate. Can be given a needle so long as I look away. Don’t try and get blood from the inside of my elbow because I’ll be on the floor in the prone position. I hate coming around from these episodes as I am confused as to why I’m on the floor looking up at people.

Ok. look away now - this is what it looks like.
Don’t worry, I did as I scrolled past this point. Lucky I was walking the dog otherwise I could have feinted on the spot

By day -7 I was feeling well again, no lethargy, appetite back, happy that I felt almost normal. Friends from uni arrived and took me out to lunch, wanting to see me before the transplant. Fantastic to see who your real friends are. The word seems to be getting out both among my practice clients and the cohort of our graduating year with lots of emails of support - made me tear up quite a lot.
Yes, always instructive how others cope with news. Some just don’t know how to communicate. Yes, I was tearing up as well and why I needed to look away from the people going by on our walking path. I’m proud of your achievements and yet we have only met via a keyboard.
 
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Flying mermaid

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Well given the serious illnesses on here, I almost don’t feel like updating mine!

Anyway had a cancellation so saw my Rheumatologist today (9:30 appointment - total shock to the system as generally just drifting into the shower about then :) ). She doesn’t agree with PMR as I have improved so much in the last couple of months and she says PMR just doesn’t improve without treatment. I now have full range of movement in my knees and strength in my legs, with only a little stiffness with inactivity. Shoulders are more of a problem - she says I effectively now have the equivalent of two frozen shoulders.

She feels that it is more likely drug induced (damn Statins), except my CK was normal and she would have expected to see that elevated. So I am in the mystery basket at the moment. She says to carry on doing what I am doing (treadmill, stretching and Tai Chi), but see a physio to get more specific shoulder exercises. In addition more blood tests to check inflammation levels and xrays of the shoulders and MRI of the left one, which is more restricted than the right. Then I see her again in August. She is hoping the shoulders will continue to improve, although it’s possible there will be some sort of rheumatology problem with them that might need treating.

I am feeling way better - not getting as tired and muscle strength is improving and the range of movement in my legs means getting dressed in not as much of an issue. So I am going to continue all my exercises (and find a physio) and hopefully have much more movement in my shoulders by the next time I see her
 

Flying mermaid

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Mrs QS’ ortho has appointments commencing at 0700 on some days
I am sure that’s true - however we retired people like to cuddle in bed on frosty mornings. I did feel it was worth making the effort to get to a cancellation- very hard to see specialists in Canberra.
 

love_the_life

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@coriander Good luck with th treatment. It is sounding quite positive but I don't want to put the mozz on your progress. It's been a mammoth journey for you and I hope it is nearly at a successful end.
 

love_the_life

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Well given the serious illnesses on here, I almost don’t feel like updating mine!

Anyway had a cancellation so saw my Rheumatologist today (9:30 appointment - total shock to the system as generally just drifting into the shower about then :) ). She doesn’t agree with PMR as I have improved so much in the last couple of months and she says PMR just doesn’t improve without treatment. I now have full range of movement in my knees and strength in my legs, with only a little stiffness with inactivity. Shoulders are more of a problem - she says I effectively now have the equivalent of two frozen shoulders.

She feels that it is more likely drug induced (damn Statins), except my CK was normal and she would have expected to see that elevated. So I am in the mystery basket at the moment. She says to carry on doing what I am doing (treadmill, stretching and Tai Chi), but see a physio to get more specific shoulder exercises. In addition more blood tests to check inflammation levels and xrays of the shoulders and MRI of the left one, which is more restricted than the right. Then I see her again in August. She is hoping the shoulders will continue to improve, although it’s possible there will be some sort of rheumatology problem with them that might need treating.

I am feeling way better - not getting as tired and muscle strength is improving and the range of movement in my legs means getting dressed in not as much of an issue. So I am going to continue all my exercises (and find a physio) and hopefully have much more movement in my shoulders by the next time I see her
Excellent to hear you have been making a good recovery. Hopefully the shoulders will improve too.
 

Pushka

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Well given the serious illnesses on here, I almost don’t feel like updating mine!

Anyway had a cancellation so saw my Rheumatologist today (9:30 appointment - total shock to the system as generally just drifting into the shower about then :) ). She doesn’t agree with PMR as I have improved so much in the last couple of months and she says PMR just doesn’t improve without treatment. I now have full range of movement in my knees and strength in my legs, with only a little stiffness with inactivity. Shoulders are more of a problem - she says I effectively now have the equivalent of two frozen shoulders.

She feels that it is more likely drug induced (damn Statins), except my CK was normal and she would have expected to see that elevated. So I am in the mystery basket at the moment. She says to carry on doing what I am doing (treadmill, stretching and Tai Chi), but see a physio to get more specific shoulder exercises. In addition more blood tests to check inflammation levels and xrays of the shoulders and MRI of the left one, which is more restricted than the right. Then I see her again in August. She is hoping the shoulders will continue to improve, although it’s possible there will be some sort of rheumatology problem with them that might need treating.

I am feeling way better - not getting as tired and muscle strength is improving and the range of movement in my legs means getting dressed in not as much of an issue. So I am going to continue all my exercises (and find a physio) and hopefully have much more movement in my shoulders by the next time I see her
Rheumatologists do like their inflammation levels, don’t they! Do you have a significant ANA? That seems to be another trigger for monitoring.
 

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