So what would you do

[PrimeTimer]

Sorry to hear this, Cas. Hope they get your BP down pronto. Finding this out on the day of your surgery probably didn't help matters but I'm glad they caught it. Sending you a little kiss and  a hug because everyone needs those every once in awhile.   

[cassandra]

Thanx PT and KaS, but the thing that makes me 'slightly' upset is that I noticed my BP being up, and rang the nurse who emailed my figures to the Neph. The neph mailed back, my figures weren't that high. That was a month ago.

[kickingandscreaming]

Medicine, unfortunately, isn't an exact science.  Do you have any idea what might be different that is making your BP rise?

[cassandra]

I have no idea what causes this rise. I started reading a bit in some renal journals and so far I can understand how the lack f being able to controle the amount of fluid volume can make a huge difference. I know I increased my 'dry weight' quite a bit (over a long period like 6months) as it stayed regularly under 90/50, and than suddenly it flips to super high. I'll look further into this.

Love y'all, Cas

[Charlie B53]

I have chronicly high BP's.  Somehow I didn't notice that I'd ran out of Metoprolol.  Of course my BP's went up.  My clinic n oticed and Dr prescribed a new to me med.  It didn't hardly make any difference.  After about a MONTH (yea, I'm that stupid) I finally noticed my heartrate being about 15 to 20 beats higher.  Then the light went on and I started looking in my meds.  Qwap!  Discovered NO Metoprolol.  Called my Primary and almost a week later it came in the mail.

I didn't bother to read the whole label, I KNEW I took it twice a day.  Within a day I started having LOW BP's.  So I of course stopped taking that NEW med.  Still had low BP's, like 100/60.  The clinic almost wouldn't do my treatments with starting pressures that low.  Almost two weeks and I was about out of Metoprolol, I wrote my Primary for a refill and asked for more than a two week supply.  She wrote back that it SHOULD have been a whole month supply.  I was supposed to be CUTTING them in half.  Oooops!   When all else fails, read the directions.

This just proves, I am a 'Guy'.  We fail to follow directions.  And often don't ask.

[cassandra]

I had the fistula placement yesterday morning. BP under controle with Amlodipine and Doxasocin. Both the (super) surgeon and anesthetist came at my bed before the Op (I was NR 1)
The surgeon drew on my arm where he was going to try. Between my armpit and my upper arm. I borrowed his stift to draw on my right arm in big letters that This Arm Can not Be used.
4 hours later I wake up with a fistula in my elbow. I can go home. In the evening my 'new fistula arm' feels numb. Hand stone cold.
Nonono not steal syndrome , not now. I ring the ward where I was. They tell me to go to A&E from nearest hospital. I wake up Hubby (free tomorrow) to tell him I'm going, but he wants to come and bring me to The Royal.
To make a very long story a bit shorter, I managed to convince him to just go to the nearest hospital. The triage nurse said there was still bloodflow to the hand. I could wait for a Dr if I wanted to wait for 4 hours.
So We went home, put the alarm on vibrate, and under my pillow, and moved/stretched my arm every 2 hours in the hope my hand wouldn't fall off.

I suppose the incision site which yesterday looked like a tennisball was pressing on the small veins going to my hand (the cephalic vein was removed in the '80's) and that the incision site has now shrunk to 1/2 a tennis ball so blood is flowing reasonably again.
I really hope this fistula is going to work, and wonder if the extra exercises I've been doing the last 2 months can make such a difference on vein development. O I also supplemented my diet with Mistletoe, Hawthorn and garlic capsules. We'll see how this goes.

Thanx for reading, love y'all, Cas

[MooseMom]

Thanks so much for the update, and I hope you will continue to post about how things are going.  I am also very pleased to read that you still are in possession of two hands.

I was very happy to see that you got your super surgeon!  Yay!  I know how much that means to you.

[Xplantdad]

CAS-sounds like you've been going through hell...I hope everything works out soon!

[kickingandscreaming]

My thoughts are with you, Cas.

[Blake nighsonger]

hi Casser. i'd come visit if i could just to say hi . Thank you .

[cassandra]

Thanx for all your sweet words MM, Xplantdad, KaS, and Blake. Makes me feel so much better.

   


Love, Cas

[Charlie B53]

Definately quite a scare having the hand that cold.

I had a cold leg repeatedly for most of the week before the Dr's finally had the dopler flow studies done and discovered a major problem.  Immediate cath lab to roto-rooter an opening through the massive clot and 5 days in ICU using the clot dissolving drugs managed to save the leg.

Definitely had better times.

That old thing, "That which doesn't kill me......"

I am very glad to hear that your surgery is done and you are on the mend.

[kristina]

I had the fistula placement yesterday morning. BP under controle with Amlodipine and Doxasocin. Both the (super) surgeon and anesthetist came at my bed before the Op (I was NR 1)
The surgeon drew on my arm where he was going to try. Between my armpit and my upper arm. I borrowed his stift to draw on my right arm in big letters that This Arm Can not Be used.
4 hours later I wake up with a fistula in my elbow. I can go home. In the evening my 'new fistula arm' feels numb. Hand stone cold.
Nonono not steal syndrome , not now. I ring the ward where I was. They tell me to go to A&E from nearest hospital. I wake up Hubby (free tomorrow) to tell him I'm going, but he wants to come and bring me to The Royal.
To make a very long story a bit shorter, I managed to convince him to just go to the nearest hospital. The triage nurse said there was still bloodflow to the hand. I could wait for a Dr if I wanted to wait for 4 hours.
So We went home, put the alarm on vibrate, and under my pillow, and moved/stretched my arm every 2 hours in the hope my hand wouldn't fall off.

I suppose the incision site which yesterday looked like a tennisball was pressing on the small veins going to my hand (the cephalic vein was removed in the '80's) and that the incision site has now shrunk to 1/2 a tennis ball so blood is flowing reasonably again.
I really hope this fistula is going to work, and wonder if the extra exercises I've been doing the last 2 months can make such a difference on vein development. O I also supplemented my diet with Mistletoe, Hawthorn and garlic capsules. We'll see how this goes.

Thanx for reading, love y'all, Cas

Thanks for the update Cassandra and hopefully you are getting better very soon and please, please make sure not to "overdo it" with the mistletoe.
After the stroke I drank three cups of mistletoe-teas every day and for each cup I used one teaspoonful of dried mistletoe soaked over night in water, shortly boiled in the morning and then brewed in the cup for  ~5 minutes before drinking. It helped me a lot at the time to ease-up my body and enable me to start with my rehabilitation.
I wish you good luck and please be careful with the mistletoe, because mistletoe can be extremely helpful, but because it is so very powerful, one has to be very careful with it.
Dear Cassandra, I shall continue to keep my fingers crossed for you and send you my good-luck-wishes from Kristina

[cassandra]

Thanx Charlie and Kristina for thinking of me, and Kristina thanx for the warning for the mistletoe. I shall be very careful.

Love y'all, Cas

[PrimeTimer]

What an ordeal! Sounds like an unbearable time. Hope you have a restful weekend now, at least mentally. Thank you for sharing such a personal experience with us. This is very valuable info for all that have fistula's. A relief to know you acted quickly before it was too late. Teaches us all something. Rest easy now, girl. Well, as easy as you possibly can.

[PrimeTimer]

How are you doing now? Hope you are not in any pain and healing nicely. Don't mean to be nosey but is the new fistula affecting the old fistula in any way? (they are on the same arm, right?)  I imagine you have to wait for the new one to mature before using it so wondered how it might affect your old fistula to do dialysis. Rest and take care. Hope the new access will make life better for you!

[cassandra]

Sweet PT thanx for asking. No the new fistula is not in the same arm as the still hobbling along 20 yr old fistula. It's in the arm where they removed the cephalic vein where I had my very first fistula.
I think it's okay, but very small. I bought a cheap stethoscope from Amazon so I could hear it (don't knock those cheap things      I can hear it)

The whole arm is still painfull, and regularly has a 'dead' hand. It's ridiculously painful to use for needling the other arm. I now can only dialyse when Hubby is home.
BUT I'm okay, the nurse comes tomorrow to change the dressing (needs to stay on for 5 days apparently (some honeycomb looking foamy stuff))

I hope you are okay too.

Lots of love, luck and strength, Cas

[smartcookie]

I am so glad everything turned out well for you!  I hope this fistula matures and holds you until you don't need dialysis anymore!   

[PrimeTimer]

Sorry you are in pain, Cas. Hope they gave you some good pain meds to take. Take advantage of them and sleep! I  might suggest a stiff drink but no, I can't give that advice so won't...lol...
Thanks for answering all my questions. One never knows if they will need what the other has learned, so I ask questions. I am nosey and I am curious. Sometimes I cringe when I ask people things but what the heck, I still ask...

I looked up that "honey comb" looking medical dressing. I think I found a video of it. The one in the video is called OPSITE and is made by Smith & Nephew. Looks to be very beneficial in wound healing so hopefully this means top-notch. Looks like it is anti-bacterial and what they call a "highly absorbent lattice pad" that allows for the wound to breath while at the same time providing a protective barrier. Hope you heal up nicely. Maybe your new fistula looks small because over time you got use to a larger one that kept expanding ? Great things come in small packages! Oh I know you are not laughing today but you will be again soon. I know it! Take care!

Here's a video of the OPSITE dressing I found on youtube.

https://youtu.be/dSytarH0grA

[MooseMom]

I bought a cheap stethoscope from Amazon so I could hear it (don't knock those cheap things      I can hear it)

LOL.  "Can you hear me now?" 

[Charlie B53]

Pain Meds = Necessary Evil

In my case, they fail to reduce the pain much, instead, they cloud my brain, making me 'fuzzy', sort of half-drunk, and far stupid(er).  And to a large extent, irratated even more with things around me that are beyond my control.

And that doesn't begin to address the constipation, no matter how well you control your diet, your colon dries out, very effectively plugging up your bottom, greatly adding to my level of 'irritation'.

Indeed very necessary for most people, but very evil.

Living with chronic pain I have found that for me, the synthetic pain meds far superior in that they actually make a significant reduction in perchieved pain but without the dibilatating side effects such as the  brain numbing and the constipation.

I had to get approval through the Pain Clinic before my Dr could prescribe.

Talk to your Dr.

I was shocked when Dr prescribed Methadone as I previously had thought it only used for heroin withdrawal.  Not at all so, it is an excellent pain med for many of us.

[LoneHighway]

Cassandra, you are an inspiration to me. I am learning so much from following your progress.

[cassandra]

Yes you are right PT that dressing is called Opsite. Today the nurse removed it and now it's gauze under Tegaderm.
And that Opsite dressing WORKS!

This is the 5' scar for a fistula in my arms, and as I'm now over 50, and on RRT over 35 years it makes my skin and tissue officially geriatric. But this scar looks better than any of the others (subjectively speaking)

Charlie I'm not allowed anything stronger for pain meds than Paracetamol as I haven't been for a gastroscopi yet to check if mu oesophagus has healed.

And MM, I can always hear you! I don't think anyone needs a stethoscope to hear MM     

And LoneHighway thank you, that's one of the main reasons I love this site. It gives people a chance to be inspired and to inspire people.

Thanx for all your sweet words again my friends, Cas

[MooseMom]

Cass, does the paracetamol work well enough for you?  Does it keep you relatively pain free?

[cassandra]

Cass, does the paracetamol work well enough for you?  Does it keep you relatively pain free?

 Dear MM I'll be honest, today is the first day I can say, it'll be okay. Yesterday was a bit more painy because of the cleaning of the wound and stuff. But today is good. I think Hubbies assistance won't be needed anymore.

Love, Cas