So I'm waiting for the doctor (Doc Boffin) the king of the renal team to drop by.
You see I've been visited by Doc Shoozenbootzen who came with Young Doctor Young Intern and basically picked up the latest info and said that the renal team are in charge so I get out when they want, and then he left. Then I got visited by the Heamo registrar and he said the renal team are calling the shots, and left.
He dropped back by to ask if the renal king had been a further three times today. Its now 7:00pm and still no Big Boffin.
That's not true he stuck his head in this afternoon to say he wasn't here but would be here later and he dropped of a last year Student doing an assesment. She was very nice but there was confusion for a minute because the Haemo Registrar was the person who asked me if they could use me as the "test dummy". But I had a nice hour long history and exam.
Doc Big Boffin just came by: Listen up dear reader here's the scoop.
I was worried that it was BAD and that I was going to get info about my Dear Dead Kidneys.... they actually are NOT dead but they've been kicked a bit.
I have Nephrotic Syndrome. Side bar: I don't know how to spell it but my doc is a Nephrologist
so the nef part means kidneys and the rest means "it can't be good" ...just go google it! Not known at this time what the cause is exactly but the treatment offered will confirm the suspected cause. It is that my new immune system is attacking my kidneys. Rememer back when I was taking Cyclosporin to suppress my immune system? ...and then I got off of it a couple of years back? .....and we were watching for GVHD and watching my skin and my legs and my liver. Well it might have been deaking us out by going quietly to my kidneys.
Anyway the treatment is to re start Cyclosporin and start me on Prednisone at a medium dose for some time. I'll also have to have some cholestrol reducing agent and sugar reducing agent as both will be elevated by the prednisone and as well, my blood pressure will need to be controlled but I'm already on that now it will just be adjusted.
This may be a long term solution and it won't repair any slight damage already done but it should keep me from getting any worse. In fact it should reduce the leaking protein, help with the legs taking on water, and reduce the gout,AND reduce the exzma so this is looking very good.
Oh and all day I've heard "you'll leave only when the Big Boffin wants you gone" and the nurse just came in with my new drugs, talk about fast workers, and says "You are going to leave tomorrow, doc boffin has signed off!"
So Clydesdale Spectacular here we come. This was made possible by Big Boffin agreeing to let me go, rather then to keep me for the weekend to monitor my drug level, as I'm going to be relatively close and I'm going to stay with a Senior Practise Nurse. I have to check my blood pressure quite often and my blood sugars and then on Monday we have to stop back in "his rooms" (I love that they still call a Dr's office Rooms). I will do a blood test Monday AM and then go see him to check my Cyclosporin levels and sugar levels etc. then we can go home.
So.....thats Not So Bad! Could have been lots worse. I don't know what you all were worried about anyway.... piece of cake. (oh crap I'm really going to have to cut back on sweets because of the raised levels AND because the Prednisone makes me ravenous.)
more later (see I told you)
Chris
Thursday, May 29, 2014
Wednesday, May 28, 2014
Expectations
I expected that the kidney biospy would hurt, after all they stuck a 2 mm hollow tube into my back and right up to my kidney. Then they stuck a device down the centre of the needle and sniped a bit of kidney for the scientist. But other then a bit as they injected anaesthetic into my skin and at several points as they pushed the needle into me there was no pain. the worst part was lying on my tummy keeping absolutley still with my head cranked over to the side. I also didn't expect to be whipped into and out of the CT machine so many times they did a couple to position the lead dots on my back then after the doc started shoving the neddle in they did 4 more shots at each level of push to check its location. Then a few more times after each of the biospy grabs.
After the procedure, back in the waiting room ....picture rows of patients in beds lined up to go in or out of imaging rooms...I was asked to roll over so the nurse could look at my wound to check for oozing. I didn't expect her to compliment my butt but saying "looks beautiful"... now that I think about it she might have been talking about the lack of ooze.
Upon my return I didn't expect to recieve a phone call from the members of our little Lukaemia mutual support group that I help to organize. They were meeting down by the beach in Hervey Bay as usual even though I couldn't make it this time. They called me and all got on the phone to wish me well and cheer me on. Very humbling that these folks, some with treatment issues, some having lost partners or daughters, would take this much time to call me.
So many expectations flipped so many surprises and I still have at least a day or two more here.
Miss bluey
I miss Bluey. She had to return to work for Wednesday & Thursday but we are talking.
More later when I see the Docs.
Chris
After the procedure, back in the waiting room ....picture rows of patients in beds lined up to go in or out of imaging rooms...I was asked to roll over so the nurse could look at my wound to check for oozing. I didn't expect her to compliment my butt but saying "looks beautiful"... now that I think about it she might have been talking about the lack of ooze.
Upon my return I didn't expect to recieve a phone call from the members of our little Lukaemia mutual support group that I help to organize. They were meeting down by the beach in Hervey Bay as usual even though I couldn't make it this time. They called me and all got on the phone to wish me well and cheer me on. Very humbling that these folks, some with treatment issues, some having lost partners or daughters, would take this much time to call me.
So many expectations flipped so many surprises and I still have at least a day or two more here.
Miss bluey
I miss Bluey. She had to return to work for Wednesday & Thursday but we are talking.
More later when I see the Docs.
Chris
the sublime to the rediculous.
okay so Bluey and I were cooling are heels waiting and waiting for some action yesterday and we called the Doc Boffins office and they didnt know when he was coming and we texted Doc shoozenbootzen's practise manager and no one knew what was happening next.
Which makes sense if what was to happen next was a circus. You never know what's happening next at a circus.
First we young doctor renal Intern whos did a full exam and history half hour of chat and proding, Then in walks young doctor Haemo intern who proceeds to do a full history and exam. Warmer hands this time which was slight compensation for a more complete proding. Then Young Doc Renal is back ording blood tests and trying to find my previous results of 24 urine and Ultrasound of kidneys. Then we get a flash appearance by young doctor renal registratrar. Didn't get her name but in a bit in walks the renal team, yong doc intern, young doc registrar and the man himself Doc Boffin. Now we are getting somewhere.
We are going to have another 24 hour urine, Check. and booked for kidney biospy on Friday. NOT BLoody check. We didn't have to say much as Doc Boffin worked out that that was still two days away and that results would come out till Monday and the whole time I'm in hospital???? He though and murmurred and prenounce they would try for today and I'm booked for 9:45 today! results on Thursday maybe out on Friday! That's better.
I'm told that my deposits for my test have filled the first one gallon collection bottle so I know I'm processing enough water to be hydrated! I'm on a saline drip now as I'm Nil ByMouth till after the procedure in a half hour.
In fact I better get ready so I'll let you know what happens ...
more later
Chris
Which makes sense if what was to happen next was a circus. You never know what's happening next at a circus.
First we young doctor renal Intern whos did a full exam and history half hour of chat and proding, Then in walks young doctor Haemo intern who proceeds to do a full history and exam. Warmer hands this time which was slight compensation for a more complete proding. Then Young Doc Renal is back ording blood tests and trying to find my previous results of 24 urine and Ultrasound of kidneys. Then we get a flash appearance by young doctor renal registratrar. Didn't get her name but in a bit in walks the renal team, yong doc intern, young doc registrar and the man himself Doc Boffin. Now we are getting somewhere.
We are going to have another 24 hour urine, Check. and booked for kidney biospy on Friday. NOT BLoody check. We didn't have to say much as Doc Boffin worked out that that was still two days away and that results would come out till Monday and the whole time I'm in hospital???? He though and murmurred and prenounce they would try for today and I'm booked for 9:45 today! results on Thursday maybe out on Friday! That's better.
I'm told that my deposits for my test have filled the first one gallon collection bottle so I know I'm processing enough water to be hydrated! I'm on a saline drip now as I'm Nil ByMouth till after the procedure in a half hour.
In fact I better get ready so I'll let you know what happens ...
more later
Chris
Tuesday, May 27, 2014
Well here I am
I'm at the Greenslopes private Hospital in lovely Greenslopes, Brisbane Queensland. I'm here be cause Doc Shoozenbootzen booked me in to see a new boffin doc for my kidneys. The nurse recognized Doc Boffins name and apparently I'm on the right kind of ward, but I don't still don't know what kind that is. She, the nurse, doesn't know why I'm here exactly, I don't know why exactly. I don't even know when I'm going to find out what up!
the real problem is the menu left on my table is yesterdays so at 11:27 with no staff visiting and now info and not even a menu form that is up to date.........I'm not going to get lunch!
Many of you know that to stand between me and my food ....and more importantly food timeing is to get trampled!.
Hurray, the dietician came in and although I don't get to choose, I'm due for lunch! and I'm choosing the rest of my meals now. See, just give me a schedule of food and I'm set! Now my meals are set they can do anything to me.
I think I get to see my new Doc Boffin this afternoon but not sure why I believe that but I need to hang my beliefs on something so that will do. My Nurse has taken my blood sugar and that's good I've signed some more forms. I guess that now I've signed in there may be some actual action in the "telling Chris what the tests are" front. Maybe the doc will show up in the middle of lunch!
more later
Chris
the real problem is the menu left on my table is yesterdays so at 11:27 with no staff visiting and now info and not even a menu form that is up to date.........I'm not going to get lunch!
Many of you know that to stand between me and my food ....and more importantly food timeing is to get trampled!.
Hurray, the dietician came in and although I don't get to choose, I'm due for lunch! and I'm choosing the rest of my meals now. See, just give me a schedule of food and I'm set! Now my meals are set they can do anything to me.
I think I get to see my new Doc Boffin this afternoon but not sure why I believe that but I need to hang my beliefs on something so that will do. My Nurse has taken my blood sugar and that's good I've signed some more forms. I guess that now I've signed in there may be some actual action in the "telling Chris what the tests are" front. Maybe the doc will show up in the middle of lunch!
more later
Chris
Sunday, May 18, 2014
Kidneys on toast
Some people like offal. I reckon its awful. some people like kidneys on toast.
My kidneys are toast. Maybe they are just lightly browned or maybe they aren't coloured up at all just slightly dried out. They are still working and they are taking out out impurities but they are letting proteins go out as well and that's not good. So it has be decided that I much got to Doc Shoozenbootzen's "Kidney Guy" so far this guy has no name real or alias so I'm thinking Kidney Guy work for the time being.
They wanted me to go into hospital on Bluey's birthday to have some tests including a kidney biopsy so I'm guessing the involves being under general and having those hand grippy stick things stuck into my gas inflated abdomen, getting a snip off the kidney and they waiting for results. Doc S-B says three days. I've put a hold on that a bit and hope to get a consult with KidneyGuy before we go on this.
Doc S-B Thinks my Diabetes my be the cause of all my leg issues. I've been getting good reading in the morning lately so not sure thats it. I did get a high 20 with my blood test at the last intragamm appointment but that was just after eating morning tea sop not sure that counts but the Doc is freaked.
So I'm on new blood pressure meds to try to reduce the leg swelling side effect. my be too early but I notice less night urination and the legs look better. My knee started hurting a bit last week but has improved and is the best its been in a long while so that med change may be working. I'm also using a TENS machine at home and ice packs to some good effect.
I'm pretty sure that we will find a mechanical solution when I finally get in to see the local arthropod. I shall not call him Leprechaun despite being irish named and short. I prefer Window. This is because his last name is a shortened version the cross bars that hold the glass in a multipaned window. Doc Window has so many people lined up to see him he can't get to me till August. I'm thinking this is because he can't operate on tonnes of folk in a week so why see them? I'm on the waiting list to get in sooner. Next time I'm in big pain with the knee I'm drop in to see the appointments person and moan and groan in the waiting room and I bet I get a sooner appointment. Anyway Its all good today so no worries!
Sun is out, not to cold, but cool. Floydd has walked and is now surveying the valley from his perch on the deck. Bluey is still sleeping on this, the first day of Birthday Week. I can't feel any pain in my knee (and it's actually bent a bit under the desk!). I'm about to go put the coffee on and start making waffles.
more later
Chris
My kidneys are toast. Maybe they are just lightly browned or maybe they aren't coloured up at all just slightly dried out. They are still working and they are taking out out impurities but they are letting proteins go out as well and that's not good. So it has be decided that I much got to Doc Shoozenbootzen's "Kidney Guy" so far this guy has no name real or alias so I'm thinking Kidney Guy work for the time being.
They wanted me to go into hospital on Bluey's birthday to have some tests including a kidney biopsy so I'm guessing the involves being under general and having those hand grippy stick things stuck into my gas inflated abdomen, getting a snip off the kidney and they waiting for results. Doc S-B says three days. I've put a hold on that a bit and hope to get a consult with KidneyGuy before we go on this.
Doc S-B Thinks my Diabetes my be the cause of all my leg issues. I've been getting good reading in the morning lately so not sure thats it. I did get a high 20 with my blood test at the last intragamm appointment but that was just after eating morning tea sop not sure that counts but the Doc is freaked.
So I'm on new blood pressure meds to try to reduce the leg swelling side effect. my be too early but I notice less night urination and the legs look better. My knee started hurting a bit last week but has improved and is the best its been in a long while so that med change may be working. I'm also using a TENS machine at home and ice packs to some good effect.
I'm pretty sure that we will find a mechanical solution when I finally get in to see the local arthropod. I shall not call him Leprechaun despite being irish named and short. I prefer Window. This is because his last name is a shortened version the cross bars that hold the glass in a multipaned window. Doc Window has so many people lined up to see him he can't get to me till August. I'm thinking this is because he can't operate on tonnes of folk in a week so why see them? I'm on the waiting list to get in sooner. Next time I'm in big pain with the knee I'm drop in to see the appointments person and moan and groan in the waiting room and I bet I get a sooner appointment. Anyway Its all good today so no worries!
Sun is out, not to cold, but cool. Floydd has walked and is now surveying the valley from his perch on the deck. Bluey is still sleeping on this, the first day of Birthday Week. I can't feel any pain in my knee (and it's actually bent a bit under the desk!). I'm about to go put the coffee on and start making waffles.
more later
Chris
Monday, May 5, 2014
Something Pithy This Way Comes
or not…
It remains to be seems whether or not this post is pithy but I'm working on the "it you say it it will be so" school of live happenings, so maybe it will be good.
or not..
Anyway to the topic of today's dissertation. "If you have a bad knee and and you can't get in to see the Orthopod for 3 months , should you cut off your leg".
I'm still having issues with right knee but I have my own TENS machine and I'm looking at alternative therapies with magnetics, So far the the best is Prednisone but that has a WHOLE set of problems that go with it. I'm cycling down now to a very low dose to see if I can get it to still help but reduce my other side effects.
My blood pressure medication is also being changed so that it might reduce the swelling in my legs, and we just found out that Prednisone may also cause swelling. But I'm taking it to reduce the pain and inflammation in the my knee, when its gout in there that's causing the problem!
My kidneys are leaking protein…..
BUT I feel real good! No really I now have appointments with a Dietician, Phyistherapists, Ortho Surgeon, GP, and Oncologist to try and figure this out so surely they will do so. In the meantime I bumble along and I'm getting so many things done around the house because I'm so hyper.
Not much Pith but some sharing.
Maybe when there's
More later
It remains to be seems whether or not this post is pithy but I'm working on the "it you say it it will be so" school of live happenings, so maybe it will be good.
or not..
Anyway to the topic of today's dissertation. "If you have a bad knee and and you can't get in to see the Orthopod for 3 months , should you cut off your leg".
I'm still having issues with right knee but I have my own TENS machine and I'm looking at alternative therapies with magnetics, So far the the best is Prednisone but that has a WHOLE set of problems that go with it. I'm cycling down now to a very low dose to see if I can get it to still help but reduce my other side effects.
My blood pressure medication is also being changed so that it might reduce the swelling in my legs, and we just found out that Prednisone may also cause swelling. But I'm taking it to reduce the pain and inflammation in the my knee, when its gout in there that's causing the problem!
My kidneys are leaking protein…..
BUT I feel real good! No really I now have appointments with a Dietician, Phyistherapists, Ortho Surgeon, GP, and Oncologist to try and figure this out so surely they will do so. In the meantime I bumble along and I'm getting so many things done around the house because I'm so hyper.
Not much Pith but some sharing.
Maybe when there's
More later
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