Howdy!

[Wheat]

Howdy, my name is Wheat, I've had been diagnosed with FSGS kidney disease since summer of 2011.  I started hemodialysis in Oct 2013.

About a year later I was on peritoneal dialysis which I thought would be ideal, but was mostly a horrible experience, too much drain pain.  That lasted about a year due to a yeast infection in the cath line.  Went back on hemo.

Then in Feb of 2017 I had a transplant at Tampa General Hospital with a kidney from my uncle, it was an ideal match.  However, after two days, there was indication that the FSGS was returning.  We tried over a dozen plasmapheresis sessions with no appreciable success.  I then had a nephrectomy of the transplanted kidney a month later.  I still have my original kidneys.

Strangely about a months after the nephrectomy, I gradually started to urinate.  It peaked at about 50% of what a normal urine output would be.  This lasted for about three months total, before quickly no longer able to urinate at all.  Interesting fact was that my dialysis center's monthly labs indicated that my phosphorus levels were much improved.  This leads me to believe that there is some kind of kidney function, atleast among the proper filtration of waste products.   I've speculated that the temporary limited kidney function was because of the transplant drugs I had been taking for that month and half.

Anyways, I'm one of those people that has a blood pressure that goes up instead of down during dialysis, intradialytic hypertension, there is about 10% of us in the dialysis community.  Like a switch, sometime in the spring of 2015, my blood pressure just started going up during dialysis; that morning I recall my breathing required slightly more effort.  Heartrate is usually good, around 69.  Since the nephrectomy, my blood pressure would really go up.  Say I would go in the morning with a blood pressure of 138/87, if I forget my clonidine, it'll go up to 190/211.  Depending on when I administer the clonidine, because timing is important, it can go up to something like 158/96.  Regardless of 'controlling' the blood pressure or during dialysis, it will go back to 'normal'.  It just takes longer if it allowed to get out of control.

I was getting sick and tired of the fact that the doctors haven't yet any protocol with dealing with intradialytic hypertension, so this put me on a quest to do my own sleuthing for anything that may help.  I hope to find some nuggets here on this forum and intend to share some things that actually worked for me as well.

[Charlie B53]

Welcome to IHD Wheat!  We are always glad to have more members.  It is our numbers that help us get through this.

I don't know a thing about in-session BP's.  Mine jumps coming in but that is just my needle-phobia. Once I am stuck and taped down I am fine again with the three BP meds I take daily.

Some that knows something will chime in.

Take Care,

Charlie B53

[Simon Dog]

I've speculated that the temporary limited kidney function was because of the transplant drugs I had been taking for that month and half.

In my pre-D days, my MD told me he could increase renal function with Prednisone, but the cure would be wore than the disease.   He was proven right when, post dialysis, I was prescribed Prednisone for two months and lost a hip as a reult.

[lulu836]

I have fought with HBP for MANY years.......it finally killed my kidneys.  Pre-dialysis I was prescribed Clonidine.  It required constant increases in dosage because it is a short term solution.  That drug is a short term "cover" drug at my dialysis center.  Meaning that the medical staff RNs are free to give it once per treatment and sparingly to anyone who spikes a dangerous BP for immediate and short term relief without calling the staff neph first.

Fast forward to the present.  Through a year of "happenings" I wound up in an assisted living facility for 8 weeks in order to receive dialysis, PT and OT.  During that time I was prescribed Norvasc to be given 1/2 tablet only when my diastolic pressure was over 60.  That worked for a while but in the recently the pressure would go up and down randomly so that the established protocol was to take  a dose about every 3 days.  I spoke to a very knowledgeable clinic nurse whom I trust about my roller coaster BP.  She let me know that I was having drug rebound and to take it every night instead of sporadically.  It works!  No more roller coaster. 

[Paul]

 
Hello Wheat, welcome to the site.

[cassandra]

Welcome to the site Wheat


   




Take care, Cas

[Wheat]

I've speculated that the temporary limited kidney function was because of the transplant drugs I had been taking for that month and half. In my pre-D days, my MD told me he could increase renal function with Prednisone, but the cure would be wore than the disease.

Right!  Actually once I was diagnosed with kidney disease, they had me on an 60mg of prednisone for about a year and a half.  Apart from the moon face, I actually did quite well, felt like superman.  However, waking up one morning, while on a road trip, my vision changed; I didn't know what was wrong with my eyes, I was thinking the worst with glaucoma or a detached retina.  Plus, I am a videographer/filmmaker/editor.  I use my eyes for my work.  Anyways, it ended up being the start of cataracts, which can eventually be corrected, so that was somewhat a 'relief' considering the other options.

Back to the prednisone, the doc decided that I really need to move off of prednisone since long term use isn't ideal.  That is when my overall health took a dive and quickly spiraled out of control.  They attempted all the other protocol of drugs, even some of the transplant and experimental drugs.   I started retaining massive fluid to the point where I was no longer able to walk.  All this fluid and autoimmune drugs compromised other organs.  I had to be hospitalized for a few months, have surgery to basically scrape out my left lung and eventually started on the dialysis.  Looking back so stupid.  I guess its that 'point of no return' with starting dialysis; should have started it sooner, would have prevented that VAT procedure which I never fully recovered from.

I have fought with HBP for MANY years.......it finally killed my kidneys.  Pre-dialysis I was prescribed Clonidine.  It required constant increases in dosage because it is a short term solution.  That drug is a short term "cover" drug at my dialysis center.

Y'know, I had disregarded my health for almost 40 years, I never really got sick, didn't really eat junk food nor did I ever visit a doctor (nor could I afford it), SO I never really knew my blood pressure.  But knowing what I know now, I believe that high blood pressure MAY have began the process of my kidney decline.  And I say that with some confidence, because about a year and a half after starting dialysis, still trying to get my blood pressure under control, I eventually got a cpap to address my lifelong sleep apnea.  It took only a week for the blood pressure to become decent and I was able to throw away most of my blood pressure pills; I think it was a maintenance lisinopril that I took.  Amazing.  Again, in hindsight, I had no idea what sleep apnea and its effects was even though I've been told in the past that I snore really loud and also stop breathing (like 30 seconds) during my sleep.

I did and still do use clonidine on an as needed basis.  Usually for the intradialytic hypertension during dialysis.   The 0.1 clonidine only lasts for about 5 hours for me, plus as you mention, it has a rebound effect that can work against you.