How many times?

[Cordelia]

I found out that when I have a trasnplant, I will have to take my blood pressure, my weight and my temperature. I was asked if a I have a scale, a blood pressure monitor and a thermometer. I have two out of the three things. I am wondering though, I OFTEN will I have to monitor all these things?

How often do  all you people who have had transplants, how often do you do these things and........my biggest question is, when do you have to report something that doesn't 'look' quite right? I mean, do I get paranoid if my temp is up a degree? How will I know when to make 'the call?" to report something.

Are these things that have to be done daily? Is it  a case of once a day or 'several' times a day these things have to be monitored? I had a fleeting thought I might get paranoid if I check these things more than "once" daily. No one at my unit gave me any spedifications to follow, I was just curious to know what people do here? What's the norm?

[Marina]

Upon discharge  I  was  given  a   Temp and  B/P  log.
I  was  told  to  check  them twice/day   (AM & PM).
Weight  daily.

this  was  on  log:

NORMAL  B/P 120/80  PULSE 60-80
REPORT  BLOOD PRESSURE  GREATER  THAN  160 (TOP #)
REPORT  BLOOD  PRESSURE LESS  THAN  90 (TOP #)
REPORT PULSE LESS  THAN  60  OR  GREATER THAN  120

NORMAL TEMP 98.6
REPORT LOW  GRADE TEMP  99-100  FOR  GREATER  THAN  24HRS
REPORT TEMP  OF  101 OR  GREATER
   

Since  I  also  got  a  pancreas,  in  the  beginning  I was  checking  BG (blood sugar) 2x/day
I  was  told to  report  ANY  BG's  over  200.
After  6 weeks  with  steady  (good)  BG's  I  was  told  to only  check  1x/day   two  hrs  after  dinner.
I  like  to  see where  I  stand,  so I  still check  AM  &  PM.

[okarol]

They gave Jenna a blood pressure cuff when she was discharged.
We monitored her temp, weight and BP twice a day for a week.
Then once a day for 3 more days.
This is to watch for fluid build up, fever (infection) and blood pressure changes (to adjust meds) and after the first 10 days, with no problems, we only checked once in awhile. You're at the clinic just about 3 days a week anyway, to do labs, but this is added info to alert the transplant team as to any potential problems.

[Cordelia]

Thanks for the helpful insight.      Yes, I will be at the clinic twice per week for labs.



Edited: fixed icon error - paris, Moderator

[Chris]

I had to monitor those for 4 months 4 times a day (did not always happen and that was ok), but they never looked at my reports (wish I never took the time to make a spiffy Excel document! ), but I also had and still monitor my blood sugar due to being diabetic. Not sure if you will have to do that if your on prednisone or not. If so, I have glucose monitors to give away. I get free ones each year. Some I try out and others I give away.
 
I still check b/p every now and again though since I am on b/p meds and doctors do ask at times what my b/p runs.
 
Before discharge the nurses and pharmacist went over everything and handed me a book on care after discharge. On one sheet it tells me when to call ASAP when temp is at a certain point or I feel a certain way. After a year though care is taken over by PCP and you do not call that ASAP number anymore, you just call the regular clinic number for my center.
 
You do not need to worry Cordelia

[Cordelia]

I've not heard of having to monitor blood sugars while at home if on prednisone. I'm not diabetic.

I recall being told I would be given a binder of things to follow, but I've not seen it yet and won't til post transplant. I think the staff joked that they like to see the patients reading the binder while in the hospital. I will be calling it my new Bible. LOL

[Chris]

I've not heard of having to monitor blood sugars while at home if on prednisone. I'm not diabetic.

I recall being told I would be given a binder of things to follow, but I've not seen it yet and won't til post transplant. I think the staff joked that they like to see the patients reading the binder while in the hospital. I will be calling it my new Bible. LOL

I've only read a couple times that people who were on prednisone and not diabetic had to monitor their blood sugars for a bit till their prednisone was lowered and stable. This was on a transplant forum I belong to that I read about a couple years ago. I don't think anyone here has had to do that, but I just brought it up just incase you have to and it wouldn't be such a surprise.

[Cordelia]

Thank you so much for the heads up Chris

[Marina]

I've not heard of having to monitor blood sugars while at home if on prednisone. I'm not diabetic.

I  think it's  a great  idea  to check  BG's  is you're  on  prednisone.    My  dad  had  back  surgery  and  was  put  on  prednisone  for over 1yr. 
He  developed  diabetes  due  to  Prednisone.

If you're  on  Prograf  or  Tacrolimus,   the  chances  of  developing  diabetes increase  as  well.

[lawphi]

Most first transplants are prednisone free these days at the centers in NC.

Hammett has to monitor his bp twice a day. He also takes his blood sugar three times a day because of prednisone. He is six weeks post transplant.

Apple sells a bp cuff that contents to an iPad or iPhone. The result is entered into a free app and can be emailed easily to your provider.

[Chris]

Apple sells a bp cuff that contents to an iPad or iPhone. The result is entered into a free app and can be emailed easily to your provider.

Where did you get that and how much does it cost?
 
I'd rather have that than the bulky unit I have, plus I can compare readings at the doctors office.

[Cordelia]

I hate blood pressure cuffs, my arm is super sensitive and I can only have it done on my left arm because of a preexisting injury to my right shoulder/arm.

[paris]

I recieved a 3 ring binder while in the hospital  (N.C.)    I had an inhospital co-ordinator who had meetings with the entire family and went over things many times so everyone understood what needed to happen when we went home. She was a huge help.  In the binder, was a chart to list weight, fluid output, fluid input, bp and temp.  They did ask if we had the necessary equipment and would have provided them if I didn't have them.    If you are on Profgraf, they will monitor blood sugar also.  Mine went up while in the hospital and I had insulin shots. Never had sugar problems but Prograf can raise sugar levels. After the first week, those numbers were good.  Glucose is still about 10points over pretransplant, but no worries.   

It becomes routine to weigh, temp, cuff, and record then repeat again 12 hours later!        Writing down fluid intake and output was a good visual to know what you have had.  The doctor would go over those numbers at each visit.   

I feel they don't give you too much post transplant routine before transplant, because it can be overwhelming. When you are in the hospital, the staff is doing all the things and getting you into your home routine.  I still email my co-ordinator when I have any question and she answers within an hour or two.     Keep asking questions.  I asked everyone here about every little thing and the doctors said I was an extremely informed patient and didn't talk down to me.   I had a great experience and I owe a lot of that to IHD.

[edersham]

Cordelia,

I have a wrist BP cuff that matches the readings on the arm one given me by the transplant hospital to within 5 pts so that is an option.

Ed

[natnnnat]

Gregory had an ancient blood pressure monitor which he pulled out of a box when he got ill last year, which makes me think that he probably received the same instructions.  I went out and bought a new glossy digital one.  He has always weighed himself daily, and I take his temperature when he seems to warrant it, and when he was sick he took his blood pressure regularly.  Perhaps this is a portrait of an ancient routine in disarray.  I should think that while things are new and you have to keep an eye on the new arrival, measurements would be very useful for all concerned, you included, to get a feel for how your system is traveling.  I'm a bit jealous of Chris's excel spreadsheet, but I'm not sure I could get away with measuring Gregory's BP and temp and graphing it.  I'd have a revolution on my hands. 

[lawphi]

Chris-  the cuff is $99 us dollars. http://store.apple.com/us/product/H4659LL/A

I am tempted to try it, as I could keep it on my purse and use anywhere.

[Chris]

Thanks lawphi
I will have to wait till I get the iPhone 5 to try it since it is only compatable with the iPhone 4 and I have an iPhone 3 GS. iPhone 5 is reportedly coming out later this year so I'll wait tiget the newer phone version.

[RichardMEL]

Was never required, or requested, to monitor anything post-tx discharge. Of course I was doing daily clinic visits for nearly a month where all that was done by them, and I would monitor my own weight just for myself (because I hate what the preds has done) and take my BP from time to time, but it has never been an official requirement. I've only taken my temp when I've not felt well since obviously if it gets above 37.5C I need to seek some kind of help.....

[Cordelia]

A wrist BP cuff sounds much better!   

[Ang]

as RM said none of this was requested either.

you will come to figure out was a bump in the journey and what is worse.

just trust your instincts, when you go to clinic ask questions of any concerns you have

no question is too silly

[RichardMEL]

Totally agree. I used to think oh it's stupid to ask this little thing or whatever, but they've heard it all before and let's face it if it's a question you're worrying about it's best to ask it - doesn't matter if the doc thinks you're stupid or whatever... you need the answer and when you have it even the comfort to have the answer, even if it's like "don't worry about it!" probably is just as important to your overall peace of mind.

Again I agree with trust your instincts. I won't go all metaphysical and claim I have some kind of mysttical or magical connection to Danny, but somehow i've always *known* when he's been doing OK. Just a hunch, or gut feel if you will (well, he's kinda close to the gut... specially how big mine's got thanks to the preds!  ) and yeah, while I would always OK tests and whatever somehow I always - or so far anyway - have known when things would be OK or not. I don't mean to be silly and ignore things that really could be serious - like pains in the transplant site, or high temp or something, but sometimes just listening to your own body and what it's telling you can be helpful too.