I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Sugarlump on April 07, 2011, 01:45:35 PM

Title: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 07, 2011, 01:45:35 PM
Once a kidney transplant patient ... always a kidney transplant patient.

My blood pressure is sky high tonight 160/107. I'm on my 6th set of different blood pressure medication combos to try and control it.
Not working. Resorted to drowning my sorrows in a gin and tonic in the hope it just might help...
Tired of all the hassle. Left message for my kidney doc. (He's off sick !!!)
Everyday it remains high can damage the transplanted kidney.

For just once, could it all work as its supposed to...and allow me to forget...

 :boxing;


PS>Apologies to Nickleback  8)
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 07, 2011, 02:15:32 PM
Nickle who?  :-[ :rofl;
 
Ittook a long tiome for the doctors to figure my bp meds out with a lot of different combinations. Some worked for awhile, but then had to change again. Last change was 3 years ago. We are just a pain to be controlled. Drinking alone is not good also, but hopefully doctor can figure the right combination soon.
Title: Re: THIS is how you remind me of what I really am...
Post by: MooseMom on April 07, 2011, 02:38:17 PM
I love that song!

I'm so sorry you are having these problems.  Nothing's easy... ::)
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 07, 2011, 04:29:00 PM
Hello moosey my friend it came on my ipod and i thought how appropriate!!!
Its a bugbear that won't go away!

                                                  :Kit n Stik;
Title: Re: THIS is how you remind me of what I really am...
Post by: galvo on April 07, 2011, 05:38:45 PM
It's one bloody thing after another, is it not? Hang in there, kiddo.
Title: Re: THIS is how you remind me of what I really am...
Post by: willowtreewren on April 07, 2011, 05:54:30 PM
Awww.

Not good to hear....

 :cuddle;
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 07, 2011, 10:39:40 PM
After a good nights sleep checking bp now and da dah its 141/94... guess I'll have to ring in today otherwise when I turn up
for biopsy, it will be too high for op...
BTW I am NOT spending Grand National weekend in hospital no way no sir
My favourite betting weekend of the year!!!!!!

  :yahoo;  :yahoo;  :yahoo;
Thanks for all's your support it really helps to know you're out there keeping an eye on me  8)
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 07, 2011, 11:27:41 PM
Still need to get it a little lower or is 141 ok for you?
 
Mine is high when I go to the docs and finally woken up from a long wait and hurrying to exam room.
Title: Re: THIS is how you remind me of what I really am...
Post by: rsudock on April 07, 2011, 11:29:42 PM
I was on 3 different types of BP meds and  they weren't working...finally started on Norvasc and that one alone is keeping it under control 130s or lower!!  :yahoo;  Have you tried it?  Hang in there!!!

xo,
R
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 08, 2011, 01:37:16 AM
The diastolic (second) figure should be 85 max  having come back from dog walk and taken meds is now da dah oooh 123/78 result!!!!!
First time under in 3 days put the flags out  :ukflag; :ukflag; :ukflag; :ukflag; :ukflag; :ukflag;
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 08, 2011, 05:45:30 AM
That didn't last long now 153/109 at 13.45pm Oops.
Better stop chatting up a certain person and think calm thoughts!!!!          :oops;
Title: Re: THIS is how you remind me of what I really am...
Post by: Jie on April 08, 2011, 10:55:02 AM
High BP seems to be common for transplant patients. At my post-transplant class, almost everyone except me is taking BP medicines. The prograf and morfortic seem not do any thing for my BP. I am more worrying about the low BP than high BP. This morning, my BP is 96/61, crossing the threshold for calling the transplant center.
Title: Re: THIS is how you remind me of what I really am...
Post by: Brightsky69 on April 08, 2011, 11:25:08 AM
Jie - My BP has been pretty normal since my transplant...weird. Usually runs 118/77 ish  It's weird because I know my donor was just starting on BP medications. (she passed from a brain aneurysm ) While I had my 1st transplant I stayed on BP medications.
Now with this kidney it's in the normal range.
Title: Re: THIS is how you remind me of what I really am...
Post by: wj13us on April 08, 2011, 11:48:02 AM
Been there, done that.

Took a couple of months before it was all worked out.  Had everything from headaches, swollen feet and ankles, and so low almost fanted a few times and everything in between.

But in the end they figured me out and been fine ever since...I'd say about 8 years now.

Bill
Title: Re: THIS is how you remind me of what I really am...
Post by: Poppylicious on April 08, 2011, 11:56:06 AM
Awww, Sugar.  Don't let those horses get you too excited this weekend.  (And maybe you should keep away from the men for a while too.)

 ;D

Hope it all sorts out for you soon.

*huggles*
Title: Re: THIS is how you remind me of what I really am...
Post by: angela515 on April 08, 2011, 11:59:54 AM
That sucks.... I hope you get it sorted quickly.

If mine ran that high I would have a seizure... eek.

Good luck :)

Angie <3
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 08, 2011, 12:08:07 PM
Awww, Sugar.  Don't let those horses get you too excited this weekend.  (And maybe you should keep away from the men for a while too.)

 ;D

Hope it all sorts out for you soon.

*huggles*
Unfortunately Poppy, I'm addicted to both species.  :rofl;  :rofl;  :rofl;
3 decent winners this afternoon and a lot of excitement!!!! Can't live in a darkened room for the rest of my life!!!  :P
Title: Re: THIS is how you remind me of what I really am...
Post by: RichardMEL on April 08, 2011, 08:26:25 PM
My BP seems to over around 130-140/85-90 when they do it, but then again last few times at clinic they've had students doing the BP taking. Docs don't seem overly concerned at this point. At the start of my transplant journey I actually had the funny/odd situation where when the really good looking female registrar would take my BP it would be low/normal (like 125/65!) and when the male one would take it it would be like 150/90 (!!!) it kind of became a bit of a fun joke for a bit. Both regs have moved on now so I seem to have settled down - higher than lower alas!  :rofl; :rofl; :rofl; :rofl; :rofl;
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 08, 2011, 08:55:28 PM
High blood pressure does damage the kidney and they won't do a biopsy if its high either so somehow I need to get it down  ?

 :boxing;  :boxing;  :boxing;

Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 08, 2011, 11:12:00 PM
I've got nothing to input. Mine was low today cmpared to other times at doctor offices. Maybe due to exercise that wore me out the day before?
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 08, 2011, 11:31:46 PM
Morning starting the day with 154/99 eek on Grand National Day!!!!
Come on Sidney sort it out  ???

Anyone got any suggestions on lowering it less fluid or more fluid?
                                                            exercize?
                                                            alcohol (worked the other night?)
                                                            laying flat with legs in the air?    :urcrazy;

 :sos;  :sos;  :sos;
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 08, 2011, 11:50:39 PM
legs in the air draws blood to chest, so no I would think, exercise supose to, and alcohol I can not remember.
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 09, 2011, 02:28:23 AM
 
I've got nothing to input. Mine was low today cmpared to other times at doctor offices. Maybe due to exercise that wore me out the day before?
         
???
Good workout then ?

Mine still really high today.  :banghead;
Title: Re: THIS is how you remind me of what I really am...
Post by: okarol on April 09, 2011, 02:59:08 AM

Ok I know this is going to sound like a dumb question - but are you doing ok controlling your salt intake?
Just had to ask.
 :waving;
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 09, 2011, 03:11:08 AM
Its not a dumb question but I haven't really changed salt levels from pre-transplant dialysis levels so should be alright.
Might watch that though in case I can lower intake more.
I think its related to the drugs more than anything as bp was fine on dialysis !!!! My kidney doc is still off sick so will probably wait til Monday and hope
he returns then. My gp won't touch my drugs without other kidney doc's say so and if I ring in, I just know they'll make me go in even if temporarily.
Not today. Monday if still very high, will have to phone in regardless.
I walked dog after taking meds and its now lower 133/74 was 166/111 earlier. Its very unstable but the new bp med they're trying propranol is a slow release one so its making it go up and down rather than keeping it steady. (Only been on these 10 days)
Title: Re: THIS is how you remind me of what I really am...
Post by: RichardMEL on April 09, 2011, 07:00:47 AM
Yeah I've found my BP more unstable because I'm on a different med (Daltizen) which apparently is what you go on post-tx vs my pre-tx ace inhibitor (coversyl) which I took the minimum dose of and my BP was awesome. They did say at some point they will switch me back as it has something to do with absorbsion of cyclosporin or something. fun stuff all these damn meds that conflict! Guess they have to form an unholy alliance to get everything to more or less work.....
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 09, 2011, 07:38:43 AM
Mine must be a VERY unholy alliance then more like a holey one!!!!  ;D  ;D  ;D
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 10, 2011, 04:43:25 AM
I was on 3 different types of BP meds and  they weren't working...finally started on Norvasc and that one alone is keeping it under control 130s or lower!!  :yahoo;  Have you tried it?  Hang in there!!!

xo,
R
I looked up the english brand name which is AMLODOPHINE but unfortunately have had allergic reactions to FELODOPINE and NIFEDOPINE which are all part of the same group so unable to have this. They make my face go bright red, pounding heart, headache and faint! Makes you feel like you're having a heart attack on the spot! Unfortunately I seem to react with a lot of these drugs.   :thx;
Title: Re: THIS is how you remind me of what I really am...
Post by: rsudock on April 10, 2011, 01:54:30 PM
I was on 3 different types of BP meds and  they weren't working...finally started on Norvasc and that one alone is keeping it under control 130s or lower!!  :yahoo;  Have you tried it?  Hang in there!!!

xo,
R
I looked up the english brand name which is AMLODOPHINE but unfortunately have had allergic reactions to FELODOPINE and NIFEDOPINE which are all part of the same group so unable to have this. They make my face go bright red, pounding heart, headache and faint! Makes you feel like you're having a heart attack on the spot! Unfortunately I seem to react with a lot of these drugs.   :thx;


sorry Slump that sucks! hopefully your neph can pull a BP pill that works out of his hat!!!

thinking of you...

xo,
R
Title: Re: THIS is how you remind me of what I really am...
Post by: RichardMEL on April 11, 2011, 01:03:05 AM
I looked up the english brand name which is AMLODOPHINE but unfortunately have had allergic reactions to FELODOPINE and NIFEDOPINE which are all part of the same group so unable to have this. They make my face go bright red, pounding heart, headache and faint! Makes you feel like you're having a heart attack on the spot! Unfortunately I seem to react with a lot of these drugs.   :thx;

Wait a minute, aren't those symptoms almost exactly what happens when you see a bloke you like a lot????  :rofl;  >:D

(sorry, just couldn't resist that one!)
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 11, 2011, 04:26:25 AM
He would have to be "some" fella to do all that!!!!!!!!!!!  ;D
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 12, 2011, 10:40:07 AM
Blood pressure is worse 166/111 today. Waiting (still) for call back from hospital.
Never going to do biopsy if its that high.

And I checked my machine (Rich! i used a control reading from normal non kidney failure person and got  reading 107/65 so it is correct)
having a g and t and thinking calm thoughts well trying!!!! ( >:D >:D :P :P :P )

Title: Re: THIS is how you remind me of what I really am...
Post by: MooseMom on April 12, 2011, 04:43:14 PM
Gosh, this is rather unsettling.  I'm really sorry you're having such a worrying time with your bp.  I'm very curious to know what's going on; let us know what the hospital has to say, OK?
Title: Re: THIS is how you remind me of what I really am...
Post by: RichardMEL on April 13, 2011, 02:19:37 AM
Some links for thought:
http://www.highbloodpressureinfo.org/high-blood-pressure-and-alcohol.html
http://www.mayoclinic.com/health/blood-pressure/AN00318
http://en.wikipedia.org/wiki/Hypertension

Seems like one G&T a day is okay! :)
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 13, 2011, 02:32:31 AM
Are you suggesting I drink too much Mr M !!!!!!!!! :beer1;
Title: Re: THIS is how you remind me of what I really am...
Post by: Brightsky69 on April 13, 2011, 11:09:09 AM
I wonder about my BP machine sometimes. Last night right before bed I got a reading of 118/90 then about a half hour later when I was in bed and relaxing my BP was 98/76.
I am so not use to it.
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 13, 2011, 06:05:28 PM
I had a different reaction when I was on Niefedopine compared to Norvasc and the Amlodopine Besylate generic version. Not all generics react the same to me.
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 14, 2011, 01:25:37 AM
Supposed to be trying Remapril today when they sort it out btwn hosp and gp, on top of Propranol.
Turn me upside down and shake me to hear me rattle!!!!  ;D
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 14, 2011, 03:29:46 AM
I have had that bed test, tilt table test.
Title: Re: THIS is how you remind me of what I really am...
Post by: buffalogal855 on April 14, 2011, 04:44:13 AM
Sugarlump - I'm new to this site, but wanted to give a BIG hug today.
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 14, 2011, 05:54:22 AM
Thanks hon  :cuddle; accepted x
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 14, 2011, 08:56:19 PM
Hopefully doc visit works out ith new theory.
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 15, 2011, 10:59:03 AM
No improvement in bp  :urcrazy;
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 15, 2011, 06:08:08 PM
That sucks, but maybe in a couple days?
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 16, 2011, 12:09:50 AM
Biopsy 10am Monday?
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 16, 2011, 12:42:56 AM
Hate those, but luckily always out after first one on liver was so nerve racking.
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 18, 2011, 07:14:28 PM
Not good news I'm afraid.
Awaiting biopsy results wed am at clinic but creatinine risen to 210
Stopped new medication and trying yet another. May have acute antibody mediated rejection. Again.
Uncontrolled high bp. Possible narrowing of renal artery.
Not looking good for Sidney.

Anyone got a spare miracle I could have ... :waiting;  :waiting;  :waiting;
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 18, 2011, 07:32:48 PM
I can "spare a square"
 
Sorry to hear of possible bad news Sugarlump.
Title: Re: THIS is how you remind me of what I really am...
Post by: galvo on April 18, 2011, 11:51:26 PM
Not good, sugar. My thoughts are with you.
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 19, 2011, 12:11:21 AM
Thank you galvo its a bummer  :'(
Title: Re: THIS is how you remind me of what I really am...
Post by: carla13 on April 19, 2011, 12:31:05 AM
Hey Sugarlump,

Just read this thread, hope things work out for you, so worrying when things don't go the way you want them to...

Noticed you were in the UK, whereabouts where you transplanted?

Hugs x

Carla
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 19, 2011, 12:56:13 AM
East Anglia that flat place!!!
Title: Re: THIS is how you remind me of what I really am...
Post by: carla13 on April 19, 2011, 01:15:15 AM
Hey,

East Anglia huh? England's a**e? Sorry, couldn't resist, I'm from the North West, which has areas that SHOULD be referred to as England's A**e!! :rofl;

Keep us updated on your progress!

hugs,

carla
x
Title: Re: THIS is how you remind me of what I really am...
Post by: Poppylicious on April 19, 2011, 03:00:33 AM
Awww, Sugar.  Many, many *huggles* for you and Sidney. 
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 19, 2011, 03:09:35 AM
Thanks Pops not over yet but wish it could have been better news. I nearly fell asleep at the wheel on A14 yesterday morning, following behind a lorry and started to nod off in boredom...that scared the f*** out of me ( never mind the biopsy) falling asleep behind the wheeel at 70 miles an hour is never a good idea!
Miracles do still happen (in Hong Kong x)  ::)
Title: Re: THIS is how you remind me of what I really am...
Post by: Brightsky69 on April 19, 2011, 12:01:45 PM
Sugar - I hope things improve tremendously for your kidney.  :pray;
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 26, 2011, 12:24:44 AM
I cant go on anymore
The steroids have made me totally lloopy
All my new friends hate me
Just want to lie down and get it over forever
Sorry folks probably the strangest goodbye ever but can't go on
pretending anynore
Sugar xxx
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 26, 2011, 12:42:58 AM
Wish I had some advic other than hang in there it will get better, but that's over used. Call doctor and let them know what is going on, this does not sound good. It is not the normal you, so a dosage change or something maybe neded or eliminated. You can contact me if you want, I'm up most of the time
Title: Re: THIS is how you remind me of what I really am...
Post by: Poppylicious on April 26, 2011, 07:42:14 AM
I hope you've taken Chris's advice and contacted the doc.  I can't offer you anything but *huggles* at the moment, but I'm thinking of you. 

 :flower;
Title: Re: THIS is how you remind me of what I really am...
Post by: Brightsky69 on April 26, 2011, 04:30:01 PM
 :'(  Dont give up.
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 27, 2011, 05:57:08 AM
Thanks for your best wishes.
The doc did come out to me and has took one of my tablets off the list as the culprit but I despair of all these drugs fighting each other.
I lived to see another dawn though didn't sleep last night except few hours of daylight. Now being hassled to have an angiogram to look at renal artery to transplanted kidney which has significantly narrowed.
Me? I just want to pack my bags and run ...Australia...Hong Kong...California...Chicago...Colorado falls to name but a few... and never stop
running

Such a lonely life being a transplant patient... :'(
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on April 27, 2011, 09:45:07 PM
Take a ruler aand draw a straight line on either side to see where you might go. As for the look n see of the renal artery, I would have that done unless you are eager to go on dialysis. Hang in there, take one day at a time and soon it will be a month, then a year.
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 28, 2011, 12:12:30 AM
Thanks Chris its easy to get overwhelmed by sense of panic ....hold my hand for a moment  :cuddle;
Thats what I need Thanks x
Title: Re: THIS is how you remind me of what I really am...
Post by: Des on April 28, 2011, 02:18:16 AM
Hi,

I have been so wrapped up with my own problems that I have missed this thread - I just want to say that I know "hang in there" is not really a chear to live by but what else can we do but just go on day by day?

I am thinking of you and I hope that you can get all of this resolved SOONER than later.

Just wanted to let you know that I know what you are going through ( at least a little)  :grouphug;

 :flower;
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 28, 2011, 10:42:52 AM
Thanks Des
Testing me more than i ever thought i could be tested right now.
But hanging on for grim death
Really worried about angiogram 2 people have told me about dangerous side effects that i may have heart attack first.
i am really big coward  :embarassed:
Title: Re: THIS is how you remind me of what I really am...
Post by: RichardMEL on April 28, 2011, 12:58:05 PM
i'm  a  big  coward  too! If  the  procedure  is  needed  to  help  you  overall  then    you  need  it.  as  or  side  effects  they  affec  everyone  differently  or  not  at  ll.  just  look  at  how  everyone  has  different  responses  to    preds.
Remember  you  are  at  a  low  point  now  for  several  reasons and  that  will  add  to  your  anxiety.  Be  heartened  that  you  have  come  this  far  shows  you  have  much  more  strength  than  you  give  yourself  credit  for.
Things  will  improve!
Title: Re: THIS is how you remind me of what I really am...
Post by: albiecl on April 28, 2011, 05:03:13 PM
Best of luck to you Sugarlump, I'm in the UK too so I'm sending you as many positive thoughts as I can from London.  Sounds like it has been a very difficult time for you.  Hope everything works out in the end x  :grouphug;
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on April 29, 2011, 03:19:35 AM
i'm  a  big  coward  too! If  the  procedure  is  needed  to  help  you  overall  then    you  need  it.  as  or  side  effects  they  affec  everyone  differently  or  not  at  ll.  just  look  at  how  everyone  has  different  responses  to    preds.
Remember  you  are  at  a  low  point  now  for  several  reasons and  that  will  add  to  your  anxiety.  Be  heartened  that  you  have  come  this  far  shows  you  have  much  more  strength  than  you  give  yourself  credit  for.
Things  will  improve!
Thanks Rich I have Tiffany and Leila with me today which is helping me stay in touch with reality and keeping me sane.
Hope you are doing ok too and that the high dose preds aren't making you hyper I had them on Day5 post transplant, made me
shaky. Can't be that bad if your flirting with the patients/nurses :)
Keep me posted.
Sugar x
Title: Re: THIS is how you remind me of what I really am...
Post by: rsudock on May 13, 2011, 03:30:08 PM
sugar girl thinking of you and holding your hand!!!
 how are things?
xo,
R
Title: Re: THIS is how you remind me of what I really am...
Post by: Sugarlump on May 14, 2011, 05:01:47 AM
Feel very disassociated with the whole thing right now ... as if its happening to someone else and that ignoring it might make it go away...
I know the truth is it won't but need time to deal with all the issues ... Need feeling as lively these days perhaps I should up the steroids again.
My dancing with the hoover days are well and truly over!
 :bandance;  :bandance;  :bandance;  :bandance;  :bandance;  :bandance;


Title: Re: THIS is how you remind me of what I really am...
Post by: boswife on May 14, 2011, 07:27:52 AM
It's good to see you sugar  :grouphug;  Are things heading somewhere good yet?  :pray;  I wanna see you happy Sugarlump...wishing you wellness!  :pray;
Title: Re: THIS is how you remind me of what I really am...
Post by: Chris on May 14, 2011, 02:35:51 PM
So your the one on YouTube dancing with the vaccum cleaner! :sarcasm; :rofl; :rofl; :rofl; :rofl;
 
Hope you feel better soon.