PD: The beginning of the end

[kickingandscreaming]

No.  My uric acid has always run high and I have no signs  at all of gout.  I just run a higher baseline.

[Simon Dog]

No.  My uric acid has always run high and I have no signs  at all of gout.  I just run a higher baseline.

I have no signs of Gout (got it once  25 years ago), but my MD keeps me on Allopurinol to  keep uric acid in a normal range.

[Charlie B53]

Dr told me, AND I loooked it up.  I thought Allopurinol was CONTRA-indicated for Renal patients?  Which is the reason they called and told me NOT to takke it.  It was already sent out in the mail. They immediately also sent me Febexo........  I forgot the name.  I'd have to go get my bag of pills and look.

Whatever, the Fex one has reduced my uric acid measurably.  I don't know it it made any difference in my calcium as Dr also increased my Sensipar at that time.

We're talking two different Dr's.  The Renal Neph and the other guy.  Qwap, I hate it when I forget words.  Not Endo. I'm stuck.  I'll remember later when thinking of something totally different.  It will just pop into my head.

Rheumatologist!

Told ya I'd remember! LOL

[Simon Dog]

My doc tells me Allopurinol clears more slowly in renal patients, and has me on a low dose.   My previous neph did as well.    Febuxostat is Uloric.  There was a big marketing push for this a few years ago since it is a new drug and far more profitable for the pharma industry than Allopurinol that is an old cheapie.

A big side effect of Allopurinol is Stevens-Johnson syndrome but, fortunately, it is relatively rare.

I always drop my neph an email whenever any other MD gives me an Rx just to make sure it is OK from a renal perspective.






sp mod Cas

[Michael Murphy]

I belong to a large practice hundreds of doctors, they keep a single computer based record for me, any medication entered by any of the 6 or more doctors I see is flagged for my nephrologist to review, in the last 6 years he has modified a couple of my prescriptions from other doctors.  The cool thing is how coordinated my care is.

[jcanavera]

Don't give the ship just yet.

Pd works by the DIFFERENCE in the sugar levels between your blood sugar and the dialysate sugar.  SHORTENING the dwell time, INCREASING exchanges, using MORE or bigger bags to equal a total more volume.

This will work as you will be spending more time with a higher sugar level, pulling more fluid and toxins, increasing your ''adequacy'.

You need to have this talk with your Neph, then the Nurse can help you make the adjustment to the Cycler program.You do NOT need to change your fill volume.


Charlie B53

Yep there are still options.  My wife is on short dwell times, 20-24 minutes, 10 hour treatment with 3, 6 liter bags & extraneal on 50% tidal therapy.  Her adequacy numbers are good.  They changed to this when she developed calciflaxis back in 2015.  With this and 6 months of sodium thiosulphate infusions three times a week, she turned the calciflaxis around.  While the sodium thiosulphate treatments ended, they kept her cycler treatment the same. 

Jack

[Charlie B53]

I am very glad to hear how well the short dwells worked.

Don't ask me HOW I knew it would work.  It's one of those things I just KNOW.  I can't explain it.

I must be Blessed as there are a number of times, things I've known that were later proven to be true.

[PrimeTimer]

How are you doing now, K&S? You mentioned another visit to the hospital over on one of Cassandra's threads so thought I'd ask. I hate hospitals. Especially if it requires any sort of stay. Be well, take care. Hope you are home resting with your furbaby.

[MooseMom]

How are you doing now, K&S? You mentioned another visit to the hospital over on one of Cassandra's threads so thought I'd ask. I hate hospitals. Especially if it requires any sort of stay. Be well, take care. Hope you are home resting with your furbaby.

I second that emotion!

I didn't realize you were in the hospital!  Are you OK?  Well, obviously not 100% OK, but, well, you know what I mean.  Are you doing better?

[cassandra]

KaS? We're thinking of you. How are you?


Love, luck and strength, Cas

[kickingandscreaming]

thank you all for caring.  I've had quite a week.  I'm still in the hospital-- or in the hospital again.  This is my second admission this week.  Over the last week, I have fainted 7 times, lost consciousness and found myself crumpled to the floor.  It got so that I couldn't trust my body not to faint.  I think part of was that on my February hospitalization for flu/asthma/A fib, I was prescribed a new drug with caused my BP to plummet.  That was part of it.

I went to the ER and was admitted for observation.  In the ER parking lot I fainted for the 7th time before admission.  I was put through all kinds of tests including an overnight heart monitor, but nothing irregular showed up except the low BP.  So the dosage was lowered and I was sent home, full of fear that I couldn't walk, drive or function.  Also, from all the falls, I really whacked out my lower back which hurt excruciatingly.

Yesterday, I went to my chiropractor for an adjustment and I screamed in pain just moving around in any direction.  She sent me off to get my back Xrayed.  So I went to urgent care for an xray and they took my vitals and found that my heart beat was only 40 beats/minute.  SO I was dropping every couple beats (a potential lethal situation) and it was during these "no beat" voids that I was fainting.  So that was their answer.  I need a pacemaker.

I was ambulanced over to a different hosp. (where I am now) for surgery.  Unfortunately, there was an emergency, and they couldn't take me until Monday.  So to keep me alive they installed a wire in my neck/heart to stimulate my heart to beat when it wouldn't on its own.  With this wire, I'm totally bedridden and can get out of bed at all in fear of jostling the wire loose.  So I on a bedpan and all kinds of wonderful hospital experiences.  But the good news is that they are clean that this is the problem and solution.  Here's hoping.

A friend just brought me my laptop so this is the first time I can visit the forum. 

[MooseMom]

Whaaaaaaaaaaaaaaaaaaaaaat??

I'm both shocked that this is happening, but at the same time I'm relieved that you are safe and that they have identified the problem and have a plan.  I'm sorry you are lingering in the hospital until Monday.

Goodness, this is just really shocking.

You make them take good care of you, ok?  Otherwise they are going to have to deal with your mates here at IHD.

Keep us updated now that you have your laptop.  We are all wishing you well!  You be careful with that wire, OK? 

[PrimeTimer]

Sorry to hear this, K&S. Will it be the kind of pacemaker they put in just under the skin near the collar bone? If so, I personally knew someone who had that and it worked like a charm for them. They were able to return to the business of living life shortly after insertion. Please take care and get well soon! And if it makes you feel any better, MooseMom called Paul Ryan a "ferret face" yesterday and I must say, I agree with her on that!

[MooseMom]

And if it makes you feel any better, MooseMom called Paul Ryan a "ferret face" yesterday and I must say, I agree with her on that!

Now ya see?  Miracles do happen! 

[Charlie B53]

What is this 'new med' that has brought on all these terrible reactions?

I hope the Dr has cut that med in half at least.

I skip beats if I have too much caffiene.  I allow myself only the ONE large mug every morning and NO more.  Not even tea.

[cassandra]

Hi KaS so glad to hear from you. Must have been such a frightening week. Are you managing PP alright? I hope Monday will be soon so you get out of that bed and be 'better' again girl.

Wishing you all the best, and the always love, luck and strength, Cas


   

[kristina]

thank you all for caring.  I've had quite a week.  I'm still in the hospital-- or in the hospital again.  This is my second admission this week.  Over the last week, I have fainted 7 times, lost consciousness and found myself crumpled to the floor.  It got so that I couldn't trust my body not to faint.  I think part of was that on my February hospitalization for flu/asthma/A fib, I was prescribed a new drug with caused my BP to plummet.  That was part of it.

I went to the ER and was admitted for observation.  In the ER parking lot I fainted for the 7th time before admission.  I was put through all kinds of tests including an overnight heart monitor, but nothing irregular showed up except the low BP.  So the dosage was lowered and I was sent home, full of fear that I couldn't walk, drive or function.  Also, from all the falls, I really whacked out my lower back which hurt excruciatingly.

Yesterday, I went to my chiropractor for an adjustment and I screamed in pain just moving around in any direction.  She sent me off to get my back Xrayed.  So I went to urgent care for an xray and they took my vitals and found that my heart beat was only 40 beats/minute.  SO I was dropping every couple beats (a potential lethal situation) and it was during these "no beat" voids that I was fainting.  So that was their answer.  I need a pacemaker.

I was ambulanced over to a different hosp. (where I am now) for surgery.  Unfortunately, there was an emergency, and they couldn't take me until Monday.  So to keep me alive they installed a wire in my neck/heart to stimulate my heart to beat when it wouldn't on its own.  With this wire, I'm totally bedridden and can get out of bed at all in fear of jostling the wire loose.  So I on a bedpan and all kinds of wonderful hospital experiences.  But the good news is that they are clean that this is the problem and solution.  Here's hoping.

A friend just brought me my laptop so this is the first time I can visit the forum.

Dear K&S,
I am so sorry and really feel for you and shall continue to keep my fingers crossed for you !
It is amazing how calm and collected you sound and I am very glad about it,
 because that seems to be only way to survive it all.
I think of you and send you lots of cyber-hugs and best wishes from Kristina.

[OldKritter]

sorry to hear of your issues.  I wish you the best and a speedy recovery

[Michael Murphy]

K&S. I had a similar problem in Oct-Nov.  I was going into V-tach and underwent a 7.5 hour operation to resolve the issue. It's amazing what they can do these days.  They even have a ICD designed for dialysis patients.  Good Luck the whole thing sucks rocks.  But you will be surprised how fast things will get better.  While you are the hospital check out and see if they have no salt chicken soup the hospitals I was in did and for the first time in 4 years I had chicken soup I didn't realize how much I missed the soup. 

[kickingandscreaming]

Thank you all for your well wishes.  At this moment, I'm scheduled for surgery tomorrow at noon. Hopefully, I won''t be bumped by an emergency.  I'm concerned that I might have to spend time afterwards in rehab and leave my dog again.  She doesn't have a long life ahead of her at 15+ and I can't bear to have to abandon her again; I just hope that some services can be cobbled together so i can manage PD and life skills with one arm in a sling.



the drug is metoprolal and it's intended to slow down a speeding heart in A fib and it lowers BP.  At the moment, I'm no longer taking it.

[LorinnPKD]

Sending you hugs and good wishes, K&S. 

[Jean]

Dear K&S, I can only imagine how frightening the fainting must have been for you. It scared me when I read it. It also scared me when I read about the metropelol, since I had been on it too at one time. I dont know if you are a "religious" person, but I am and I will pray for you. It doesnt hurt and I wish you a perfectly successful surgery.

[cassandra]

Good luck tomorrow KaS. I'm sure you'll be fine tough lady. My dad had one placed and lived an awful long time with it 

Don't waste energy on worrying about your dog, you need energy for yourself now, and she/he will be fine too.

Just in case I'm sending loads and lots of positive and healing vibes your way.

Love, luck and strength, Cas

[MooseMom]

Do you ever roll your eyes when, after you've described some medical condition you have, people regale you with stories that begin with, "Oh, my -------- had that, and (this and that and that again) happened!"   

Well,  , my mother needed a pacemaker, and not only did it save her life, but it also made her pretty much as good as new (apart from her still needing dialysis).  So, I am hoping you will reap the same benefit.

Good luck tomorrow.  We will all be thinking of you.  We need you to be fit for when the Senate starts looking at that dreadful House health bill.   

[Simon Dog]

Don't waste energy on worrying about your dog, you need energy for yourself now, and she/he will be fine too.

Do not underestimate the importance of a good dog in one's life.