I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: cassandra on March 25, 2017, 05:31:17 PM
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Hi all. As mentioned in some other posts, my 20 yr old fistula is nearing it's end. The flow fluctuates from 200 to 1800. And it's so calcified that it's impossible to create new button holes in it as I can't get a sharp needle in it anymore. But I'm still using the 'old' button holes okay.
So the procedure has started to create a new fistula, which is a bit problematic after 20+ yrs D.
4 vasc surgeons have seen my arm where I've already had a wrist fistula when I was a kid. I have been told for the last nearly 40 yrs that there's no usable vein in the 'bottom' arm. One surgeon has tried to make an upper arm fistula, mumbled 'rubbish veins' and closed me up again.
Than I had one who said enthusiastically that he could make one near my wrist.
One that said he would try a fistula in my upper arm, but I would have to be under general anesthetic, it would be complicated, done with 2 or 3 separate operations, but he might also try a graft. And the last one said (Thursday) that it was very unlikely going to be a fistula, so a graft which could last a year, maybe three years (he said encouragingly) I'm scheduled for the 12' April.
I come home and discuss with hubby (who came with me to clinic) 1. My old fistula still works. 2. Do I really want to go through 2 or 3 operations for a graft that might work for another 3 years?
So we've decided (for now) to ask my vein mapping of my arm appointment to include veinmapping of my ankle. Maybe a fistula in my ankle lasts longer (and maybe I can have buttonholes there)
I rang the next day to the nurse who had never heard of a fistula in the ankle, but he would come back to me, he said. I'll ring again on Monday.
I'm not complaning, I've lived a lot longer without kidneys than most people I know/knew on D, but I would like another 5 years more or so, especially cos we're about to start to renovate the house, and I would like to enjoy the result (we are slow with those things, could take a few years ;D. )
Any suggestions?
Thanx already and love to all, Cas
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I believe you are on the right track in mapping your legs to find out if access can be developed. I don't know about going as low as the ankles, the veins that far down may be a lot smaller than higher in the calf or possibly in your thigh. Mapping will tell the sizes. The condition of those veins may be another story altogether. Calcification of veins may not be localize,d to access sites and may be a general condition througtout your body.
I will keep Hope for a good test result and then simply have to wait and see what the Surgeon finds when he gets in there.
Prays always.
Love,
Charlie B53
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The strange love hate relationship we have to dialysis extends to our fistula, I have had mine only 6 years 4 on dialysis but it's the first thing I check every morning and the last thing I check every night, I've named it after a character from Leave it to Beaver, Lumpy of course. I m sorry for you problematic fistula I can imagine it's quite upsetting. I hope something works out the girl in the next chair just had one put in her thigh. Keep up the good fight you are a inspiration to us short timers.
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Thanx guys
:cuddle;
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Being on PD, I don't know much about fistulas, but I wish you the best in your outcome. Carry on.
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I am sorry Cassandra that I am unable to make any suggestions as I have a chest-cath (best decision I could have made about my own "access")
and I just wanted to send you my good-luck-wishes and want you to know that I hope "things" turn out alright for you.
Best wishes and good luck from Kristina. :grouphug;
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Thanx girls
:cuddle;
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Please let us know what new information you get and what you decide to do.
I was watching a TV show ("Vice") last night that had a piece on how technological and neurological breakthroughs have given more and more people dealing with spinal injuries and the resulting paralysis a lot of hope for the future. It was amazing! However, it did make me wonder why such breakthrough have not been forthcoming for dialysis/ESRD patients. There should be more imaginative options for people with "rubbish" blood vessels!
:cuddle;
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I think the kidneys are the Rodney Dangerfield of organ. No one really appreciates how important they are until they don't work. So not that many are paying attention to it. Also, there's a lot of money being made on ESRD patients, so if it ain't broken don't fix it. To be fair, the kidneys do a lot of subtle and complex tasks, so it's not "just" a mechanical object like the heart. So probably difficult to improve.
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Cas: While I can't speak for fistula's, I CAN support you 100% on whatever you decide! :cheer:
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There are several locations developing a implantable Artificial Kidney. At one place they have taken the components and placed them as a wearable Artificial Kidney. Those test were very successful. Further more there are several locations working on removing the rejection from a cadaver kidney. We are nearing the cusp of major changes for ESRD patients.
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Thank you all for the support, and Michael I'm hoping to still be around and in good enough condition, and in the right place (geographically, financially etc) to benefit from any of those changes. Those changes have been just around the corner for an awful long time now.
But hay, when there's life, there's hope
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Around my center a few people are using what I call groin fistulas but they are probably thigh accesses. There are multiple guys and one woman. It seems a bit awkward to come in and strip down to shorts, but like most things the awkwardness is probably no match for the alternative. Good luck.
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A short term access can be done by starting an arterial IV in the inner thigh. These are not considered viable for long term use, and the RNs in my wife's hospital refer to then as "dirty lines". I have also seen a setup that looked just like a chest cath on the outside of a thigh.
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A short term access can be done by starting an arterial IV in the inner thigh. These are not considered viable for long term use, and the RNs in my wife's hospital refer to then as "dirty lines". I have also seen a setup that looked just like a chest cath on the outside of a thigh.
I thought these were fistulas but honestly I don't look that closely. I do think that needles were involved not catheters.
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Thanx all, I'll be ringing the hosp again tomorrow, I couldn't get further than putting in a request for iron, and beta blockers as my BP has shot up quite a bit. Apparently Proprapronol (Sp?) doesn't dialyse out, but might cause me asthma attacks.
Love y'all, Cas
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I've seen a few people with a fistula in their upper thigh. You might ask about that. They just wear shorts to dialysis.
I will have been dealing with renal replacement therapy for 30 years come June. I know what you mean about "HOW LONG" do we deal with this.
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Shorts in the Winter could be a bit chilly.
I would be tempted to drag out my sewing machine and try to get it to work again. 'She' has to be a 'female' as it has quite the attitude and doesn't always work as well as I wish it would.
That said, I would be tempted to figure out how and where to place a 'zipper' in the leg of pants making an 'access' to get to your access.
Laugh, it could work! As long as there aren't too many 'leaks' they could be worn in public and no one would notice.
The alternative is the Ladies could go back to wearing skirts!
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If you are like me and not the creative type, you can buy pants off hemowear, too! http://www.hemowear.com/sweatpants-1/ I hope you find a solution soon. Catheters are no fun.
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WOW!!!!!
I never had a clue that site existed.
Thanks for the link.
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Your welcome! :flower;
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I have a couple of friends with groin lines. For both of them, the groin is the last place they have for any kind of access. They've both been on hemo since they were children. I do remember one girl, when I was a teenager, who had a fistula in her upper thigh. I don't know if it was ever used, as it was put in as a backup to PD (I had one in my wrist as a backup as a kid too). I also had a shunt in my ankle when I was 12. It was put in, in an emergency situation. That was in the days before lines were so commonplace.
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I've had groin lines before too. Not allowed to 'take home' though. The problem with the central caths is the central stenosis both sides. Anyhoo veinmapping again tomorrow. A surgeon rung back (again) to ask if I remembered who operated on the removal of my cerebral drain going to the bottom bit of my heart when it was infected. Yeah no idea, it was in '03 in Broadgreen hosp, he came from Sweden and happened to be in Manchester for lectures. I had sepsis then, and hydro cephalis so I don't remember more than that he was nice, duh. Anyway I'll know 'the team' by name by the time of the op on the 12'.
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My gosh you've been thru a lot and then some! I wish you well for the vein mapping. Take care.
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Thanx again PT, the vein mapping went as expected, there 'looks to be a useable vein in my armpit :o. ' Okay. I come home and it's my friend the surgeon on the phone. The anesthesist wants a Necho scan (????) from my heart on Monday to see how extended the calcification is. Nb Necho scan looks like a CAT scan from the heart according to dr.Google.
In the mean time is my FIL admitted in another hosp with a TIA, and is hubby trying to take care of his mum who's deaf and nearly blind while his dad is recovering. So I'm trying to stay all bright and optimistic, positive and happy so we're ready for the next crisis.
:banghead;
Love y'all, Cas
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Good grief! You could be a lecturer on "Crisis Management"! I hope you all have happier days ahead! :cuddle;
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Armpit!!! How on earth do you self-cannulate your armpit? What a weird place to have to stick a needle! I hope it works out for you.
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Armpit!!! How on earth do you self-cannulate your armpit? What a weird place to have to stick a needle! I hope it works out for you.
Is this the only viable option you've been given?
How is your family getting on?
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Thanx again girls. KaS I'm sure it will be a multiple procedure thing as in first create fistula (the connection between vein and artery) next stage to move the fistula to a reachable place on the arm. And yes MMum, they found one usable vein, that one. It will all be fine I'm sure ::)
Tomorrow SIL comes up North, and I hope Hubby and she will have the nerve to bring up some kind of assistance need for their mum and dad, and if that doesn't happen I'll have to sweetly suggest something. The hosp hasn't rung about FIL so I have to believe he's at least stable.
Love y'all, Cas
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Thanx again girls. KaS I'm sure it will be a multiple procedure thing as in first create fistula (the connection between vein and artery) next stage to move the fistula to a reachable place on the arm. And yes MMum, they found one usable vein, that one. It will all be fine I'm sure ::)
Tomorrow SIL comes up North, and I hope Hubby and she will have the nerve to bring up some kind of assistance need for their mum and dad, and if that doesn't happen I'll have to sweetly suggest something. The hosp hasn't rung about FIL so I have to believe he's at least stable.
Love y'all, Cas
Wow, you mean while you are going thru all this you have to deal with inlaws too? I feel for you! Really, I DO!!! I don't even talk to any of my inlaws anymore...
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Well, the acute crisis of FIL is settled, well he's home. SIL is back to London. So tonight I had time to think about the op next Wednesday (can't sleep).
In the letter from the hosp it says I'm under the care of the same surgeon who'd said I had "rubbish veins" while having a first go at creating a fistula in that arm. So why would I go under GA and let him have another go? Also I'm thinking that one of the surgeons had said that I might enjoy a graft for maybe as long as 3 years. And then I was thinking that it's going to be mighty difficult to stick my needles in my lovely button holes using my just operated on arm. Hubby can't even look at the needles, so I'll have to go in-clinic. And I'm really not happy about that.
So tomorrow I'll call my friend the surgeon to ask if it's really going to be the previous guy again, and if so I'll kindly request a possible operation by the 'chief surgeon' (well, his name is on everything (like the request for my heart scan))
I mean my ol' fistula might last another 2, maybe even 3 years too. If I think really, really positive and keep doing those exercises.
And I found some capsules with garlic oil extract, maythorn oil extract, viscum album oil extract and chlorophyll oil extract which are supposed to be good for the veins and arteries...... I can but hope.
The thing is that even when 'they' say it's going to be a fistula, done by the chief, it doesn't mean anything. 'They' said 'they' were removing my own tiny kidneys neatly from the sides with two small cuts, and I ended up with a huge cut from my breast bone to my pubic bone.
I'm pretty sure now I'm going to cancel tomorrow and intensify my exercise regime.
Thanx for 'listening' again
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I'm really sorry you are going thru this, cassandra. If it were me, I'd probably do what you're thinking of and ask that the chief surgeon perform the surgery or another surgeon. Anyone but the one who made those terribly negative remarks about your veins. Tell them you want someone who hasn't given up or is burnt out because YOU sure haven't! Show them who the boss is! Hopefully your fistula will afford you the time to schedule with another surgeon. I will send a wave of positive thoughts over the ocean to you tonite, here it comes!
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Thanx PT I'm catching them. Thanx there's so many
:cheer:
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I have to admit that the thought of Surgery scares the Hell out of me. Think about it, they knock you smooth out so you cannot tell who is doing what to you. Laying naked on a table who God knows who all around you. Just because one Surgeon sayd that 'He' wil be doing the procedure doesn't necessarily guarantee that it will HIS hands doing the work. He may be merely 'supervising' some other relatively less experienced Surgeons that need the experience.
After Clinic today I have appts at the VA Hosp. My regular check in with my Primary. Then, because I had asked her if she could prescribe something to help me with the anxiety of upcoming needles', she is sending me to see a Psych. As if I need a Pysch. I've known I am way off my rocker for a very long time already. Having a Psych confirm that won't be anything new.
I am going to tell the Psych that what I would like to see is me, wired up for stereo. A complete EEG and EKG. Have these on and running for at least 15 minutes prior to the Nurses attempting to put in the IV for upcoming Surgery. The graphs should clearly show how the anxiety manifests within sections of my brain and the resulting heart beat changes which cause my veins to harden and roll away from the needles.
This may allow even better drug decisions to be made to pre-medicate prior to future needle sticks.
I bet they won't do it. Any takers wanna bet?
Cass, I hope your Surgery goes well. Even if it turns out to be 'That Guy' you can be sure that he will do his absolute best to make sure your graft goes successfully. Pride in his work will not allow him to do any less. Bank on that. We A-Holes are like that.
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Hi Charlie thanx for that, I'm still awaiting phone calls from two surgeons, the guy/boss who I might allow to do it, and the coordinator.
And I'll probably be prepared to go ahead after a signed form from him is in my inbox. Maybe I'll ask for a video recording from the whole thing. Maybe I can convince him it could be for educating less sophisticated surgeons or something.
I'm sure there's something to be learned from Needlephobic's thread BTW.
Monday will be my decision day. Than again there might not be a bed if I ring Tuesday morning to check if there's a bed.
Love y'all, Cas
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I'll be eager to hear what you decide. There's so much to think about; it must be overwhelming. I hope that if you have the surgery, you will be able to trust the surgeon.
:cuddle;
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Maybe I'll ask for a video recording from the whole thing.
Do you really think the surgeon is going to allow your contingency fee counsel to have a copy of such evidence in the event something goes south?
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Maybe I'll ask for a video recording from the whole thing.
Do you really think the surgeon is going to allow your contingency fee counsel to have a copy of such evidence in the even something goes south?
I've never asked anything like it before, so I really don't know, but this IS the NHS, and it IS in a teaching hosp, and I am a 'very interesting' case as I'm always told. So I don't see why I wouldn't at least ask. And that will only be if I will have the surgery. And evidence can always disappear can't it?
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Dear Cassandra,
... just to let you know that I shall continue to keep my fingers crossed for you ... :grouphug;
... and ... since you are being told that you are an interesting case (medically speaking), there is no doubt that the surgeon will try his very best for you and will make sure that you are alright...
Why do I think like that? Because I also was told that I am an interesting case because of "my" very rare genetically inherited disease (which caused my ESRF) and my health history, which, over the years made the whole of my body a bit more fragile ... and ... as a result of all this, surgeons have always tried their very best, whenever an operation was necessary
... I have no doubt that you will do well and I shall continue to keep my fingers crossed for you.
... There is one trick I always use before each and every operation I have to face: I always make absolutely sure that I am as calm as I possibly could be beforehand (with the help of classical music and a little yoga), because a mental calmness gives my body a better level of strengths to "pull through" an operation and it also assists to recover with much more ease after the "event"...
I wish you lots of good luck and ... see you later...
Best wishes from Kristina. :grouphug;
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Thanx Kristina, I'm always calm before the op. (I chemically enhance myself with some Diazepam :angel; )
Love, Cas
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And evidence can always disappear can't it?
It's called spoliation and the courts really frown on it, particularly once a party has been warned of a potential claim and received a standard spoliation letter from plaintiff's counsel.
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I wonder if taking a good vein/artery from a leg and moving it to an arm to create a fistula is possible. I would think a stent could be used to connect them. My husband has a small stent placed just above his venous buttonhole and it's been working beautifully, never needing angioplasty there, which is why they put the stent there. I also knew someone who had an artery from his leg used along with a stent for his heart and pacemaker. Funny I woke up this morning thinking about this stuff and you, cassandra and what they can do for you. I'm sure they will figure a way to keep things running for your dialysis. Hope your dialysis days will start to improve with the surgery so that once you heal and recover, you can get down to the business of the remodel on your house. That will be way more fun! I don't know why but worrying about interior paint and flooring and colors and decor just seems a whole heck of a lot easier to do than worrying about our health. Go figure! :waiting; :rofl;
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Thanx all honeys. Today I woke up with the sun shining brightly, so I'm fine again. I'm a 100% positive I'll get Mr HeadGuy to do the operation, and it will be just fine.
Yesterday I received 3 of my 6 ordered stress balls for my arm exercises. These ones are with aromatherapy (relaxing, up lifting, positive) I like them. I did loose 2 already. I'm working myself up to a search/organise the front and backroom in a sec just to find them, and will be awaiting the next lot of balls eagerly. These will be black and sparkly.
Love y'all :grouphug;
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Thanx Kristina, I'm always calm before the op. (I chemically enhance myself with some Diazepam :angel; )
Love, Cas
Prior to me 'going clean' in 81, I would usually just twist up a fat one and burn it! Green of course. Long ago the Dr's used to order me a shot with Demerol a half hour prior to pre-op beginning to get me ready. I'll never understand why they quit that. It worked so well.
Saw the Psych Lady and talked about the childhood conditioning that started all my 'Needle-phobia'. We pretty much agreed such a deep seated conditioning won't be an easy task to change. So the most immediate treatment available may be drugging prior to exposure. She will go ask my PCP to write me up for Zanax. I've never tried it, know nothing about it. Wife uses it but I don't think it is near enough. She is still difficult. How we've managed 40 + odd years I'll never know.
sp mod Cas
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Wife uses it but I don't think it is near enough. She is still difficult. How we've managed 40 + odd years I'll never know.
Thanx Charlie you (always) crack me up. :rofl;
NB if the both of you are taking Zanax you might see a huge difference
:angel;
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Surgery coordinator just called back. I let him politely finish his answer that the 'rubbish veins surgeon' is actually one of the best surgeons with great bedside manners. I asked if there was a possibility of 'the Chief' to do this op, and that someone else could have the appointment with 'rubbish vein surgeon'. In my conversation with The Chief he sounded very positive etc. He sighed and said he was gonna do his best for that.
I'm hoping the answer comes soon and not during our holiday, and that it will go well.
NB at no point did I say 'rubbish veins surgeon' in our conversation :angel;
I feel strangely relieved and deflated at the same time.
Love y'all and thanx again for all your input .
:cuddle;
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Also I'm thinking that one of the surgeons had said that I might enjoy a graft for maybe as long as 3 years.
On Thursday I met with a nice doctor in HEMATOLOGY/ONCOLOGY who seemed very knowledgeable and helpful. She made some fairly disparaging remarks regarding the use of grafts and the propensity for them clotting off. I believe her point was the artificial nature of them meant that they were going to clot off much faster than the fistulas. From her comments it sounded like she felt the choice of grafts was poor from a blood specialists standpoint.
(I was there because 25 years ago when my lupus was bad I had a clot, she didn't feel there was much risk of that with the transplant but did order some blood work to see if I had DNA that would lead to more risk of clotting, but again it really would not affect the post surgery treatment just allow them to make more informed choices.)
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Surgery coordinator just called back. I let him politely finish his answer that the 'rubbish veins surgeon' is actually one of the best surgeons with great bedside manners. I asked if there was a possibility of 'the Chief' to do this op, and that someone else could have the appointment with 'rubbish vein surgeon'. In my conversation with The Chief he sounded very positive etc. He sighed and said he was gonna do his best for that.
I'm hoping the answer comes soon and not during our holiday, and that it will go well.
NB at no point did I say 'rubbish veins surgeon' in our conversation :angel;
I feel strangely relieved and deflated at the same time.
Love y'all and thanx again for all your input .
:cuddle;
Sounds like you just might be making some headway with these people. Keep it up! Maybe they'll learn something. Please let us know how it goes. Meantime, here comes another wave of well wishes!
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Hi Cassandra, I just saw this thread. I hope everything went well for you. I will be keeping you in my prayers and sending lots of healing thoughts in your direction. Anne
:flower;
:cuddle;
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Same here! Hoping everything is going OK out there!
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Well hi sweet people all your thoughts and good vibes are arriving I think, yesterday I received a letter from hosp that I'm having surgery the 4' May by ......... The Chief Surgeon
:yahoo;
Now just hoping and staying positive that all goes well. Thanx all for all your sweet support
:cuddle;
Love y'all, Cas
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Hi Cass, You'll be getting done just a few days after I get my first access. I will be thinking Positive thought your way. I have Faith all will go well.
Take Care,
Charlie B53
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It's good to have the best, I along with many others are sending positive thoughts to your new fistula. Plus I ll mention you in my prayers between now and the fourth.
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I keep my fingers crossed for you and send you more good-luck-wishes
from Kristina. :grouphug;
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This is good news, Cas, glad you won that battle! I wish you AND the surgeon many many well wishes for the 4th! After that, hope you get a good rest from all the stress and pain. Might be a good time to look at ideas for the reno on your house. All kinds of good ideas and pictures online. When we still had a house, I kept our ideas in a little box that I called our "house box"...from paint samples to floor tile samples and color schemes and the like. We don't have the house anymore but we still have our house box. Now it's a memory box. Glad I kept it. Good luck to ya!
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Thank you all so much, y'all will never know how much you all mean to me, for always being there.
Charlie Good luck to you too.
Thanx again, lots of love, luck and strength to all of you, Cas
:cuddle;
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So suddenly last Saturday I had a bit of a twitch in my stomach . Thought I was too dry
So stopped UF. Pain got worse and started feeling clammy. Thought low bp, made it to 2 hrs
And don't remember how I managed to take myself off. My weight and bp were
Perfect. Went downstairs to have my coffee. Couldn't drink it, had to throw up
Violently. Woke up in the night to throw up again. I think food poisoning ?
I wake up feeling weakly. Throw up again and it's black. Suddenly Diarrhea and it's black.
Bugger something is bleeding. I didn't start feeling better and decided to ring the
Hosp the next day as it was bank holiday. I couldn't walk anymore by than
so rang 111 and Ambu brought me into local hosp.
I explained I have this one vein in my arm where you can take blood from so take what you need.
She actually listens, takes some bloods and sticks a infusion thing in.
I do question why I need 1 liter of saline, but the Omeprazole works great. An awful less pain
No other Dr's visit cos it's bank holiday Monday.
So this morning a dr comes to tell me he scheduled me for a gastroscopie /endoscopie an than we
can dialyse tomorrow . I ask if he's for real and that I need D now, not after you've made my
Stomach bleed again. He was not happy.
I rang HHD nurse to help me get to a hospital with D.
20 mins later another dr came to inform me I would be transferred They
Let me wait till an hour ago. So I'm in the D-aware hosp now, but no D. Cos staff gone home.
My hb is low, but K+ is fine.
Only a bit worried about my fistula op this Thursday/
Friday.
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OMG, Cas! Was just thinking about you and your upcoming surgery when I read this. Hope they get you fixed up fast! Don't know if it would be food poisoning but sounds a little like a bleeding stomach infection/ucler from H. Pylori bacteria. Please let us know how you do. I'm sending you a tidal wave of well wishes across the pond this time! :pray;
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hi Cas
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Good luck. What kind of hospital was it that did not have dialysis in house?
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Prayers constantly until I learn of your improvement.
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Oh my God, cass! What in the world is going on? How are you today? I'm really shocked to read your post. I'm so concerned about you. When you can, please let us know how things are going. I'm so sorry this is happening to you.
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Hello hello sweet friends I'm home! I had 'no Tinzaparin' D this morning in hosp. Straight to gastroscopy which was awful as always, and ulcers and scars bleeding, and a lot of hernias also in the (forgot name) small intestines and esophagus, and stomach. So it's okay. Painfull but it'll heal with double dose Omeprazole.
Dr went straight to cancel op for Friday and came to tell me that "they had to make sure it would be by The Chief again when rescheduled. ( I explained [ridiculously emotional] the hassle it was to get that sorted in the first place)
And so now I'm sort of 'happy'. In pain but I'll live. Back for another gastroscopy in 8 weeks to see if it's healed.
I'm sure I'll keep oldy fistula going, and develop 'better' veins in my other arm with at least 8 weeks more squeeze ball exercises.
BTW I asked him if it was possible for him (head Nephrology ánd he called me his old time friend :angel; ) to inform his colleagues to not tell people with a swollen fistula arm to "not use it and keep it raised" but to give them a squeeze ball and exercises.
He said he would, and I believe him
Thank you all again for all your wishes, thoughts and prayers
Love y'all, Cas
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What kind of hospital was it that did not have dialysis in house?
Lots of hospitals don't have D facilities. This hospital has a clinic (where I used to go) but it is not under the care of the hosp. It's from Fresenius which doesn't take people from hospital. Not in their contract from the NHS (I checked that)
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Ooooooooooooooh, I've been waiting all day for news from you!! How funny that you are having to give fistula advice! They are lucky to have you as such an educated patient.
I'm glad to hear that you are home and done with all of this mess for now. I wish I could say the magic words to have all of this go away, but I'm happy that you are home.
What is Omeprazole? I guess I could look it up, but I think I'd learn more from you than from the internet.
I am sad to hear, though, that your op with The Chief is having to be rescheduled. I can certainly understand why you'd be so disappointed. But at least it will be done by The Chief, right!?
Thanks so much for the update!
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:boxing; Whew! I don't know if they make 'em any tuffer than you, Cas. Glad you are back home and healing. And no more puking! :puke; Good thing they don't have an emoticon for diarrhea....
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Your toooo funny PT, and thanx. Yeah the puking emoticon will have to do :angel;
MM thank YOU
Here comes the Omeprazol
It's one of the heavier proton pump inhibitors like Ranitidine is. So it reduces the acid production from your stomach lining, sothat the wounds in your gut don't get attacked by the acid and get a chance to heal. Longterm use is not a good idea cos the acid needs to break down food so somewhere else in the body the nutrients can be absorbed. Longterm use causes shortaches like Magnesium and vitamines.
So to increase the speed of healing I will have to change my diet a bit too.
So the 14 rolls a week of chewy mints will be out (mint 'weakens' that closing valve from your stomach that stops acid coming up into your esophagus (where it causes damage) Also my near litre a day of coffee will be reduced to just one delicious cup. Also alcohol will be a no go for a bit (she says)
Love y'all, keep strong all, and lots of luck all, Cas
:cuddle;
Hubby bought all sorts of tea already. So sweet. And he had to deal with the architect, the builder and the Nxstage delivery all by him self, I feel nearly guilty.
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OMG, Cass, you hang in there. I'd write more except that I'm recovering from a little hospital adventture myslef, And it's true, a lot of hospitals don't have D.
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Hello hello sweet friends I'm home! I had 'no Tinzaparin' D this morning in hosp. Straight to gastroscopy which was awful as always, and ulcers and scars bleeding, and a lot of hernias also in the (forgot name) small intestines and esophagus, and stomach. So it's okay. Painfull but it'll heal with double dose Omeprazole.
Wait a minute. What have I missed? Do you have some sort of chronic GI tract inflammation/disease that requires you to have frequent gastroscopies? I'm really sorry if you've discussed this in earlier posts and I've missed it.
Thank you for the lesson on Omeprazole. It was really interesting. For how long have you been using it? What constitutes "long term use"? Sorry...so many questions, as usual. ::)
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Also my near litre a day of coffee will be reduced to just one delicious cup.
Better break out the expresso machine (or find a used one) and turn that into four delicious thimble full shots... Good luck cassandra .
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Wife sometimes has problems keeping food down, and/or in. Too often just 20 minutes after eating she would be in the bathroom. Amazing how quickly food can pass completely through the digestive system. That's a long ways if you stretched out the intestines it's near 40 feet!
We LOVE pepper, on most everything. One day I had the bright idea to NOT use any pepper. She didn't have any problem. So we did it again the next day. NO Problem. Bingo! Found one of her
'triggers' Now I won't even add any pepper to anything we cook and she won't touch the pepper mill. Now we have to find the other 'triggers'. It's much like an allergy. They can be difficult to figure out.
I really miss my expresso machine. It was an old Braun side-by-side with a drip coffee pot. The pot side melted down and caught fire. I used the sink hose after I unplugged it. Qwap. I have TWO Bean grinders yet. I figure I'll run into the right machine when the time is right.
When I still had teeth I used to buy those chocolate covered expresso beans. I should find the button to make these letters much bigger so I can emphasis 'GOOD'
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How are you doing today, cass? Is the UK having a nice spring?
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Hello hello sweet friends I'm home! I had 'no Tinzaparin' D this morning in hosp. Straight to gastroscopy which was awful as always, and ulcers and scars bleeding, and a lot of hernias also in the (forgot name) small intestines and esophagus, and stomach. So it's okay. Painfull but it'll heal with double dose Omeprazole.
Wait a minute. What have I missed? Do you have some sort of chronic GI tract inflammation/disease that requires you to have frequent gastroscopies? I'm really sorry if you've discussed this in earlier posts and I've missed it.
Hi MM don't worry you haven't missed anything I don't think. Yes when I was a qualified college kid, but completely an uneducated patient at 18, I was admitted
in a (34 years ago) hosp with huge protein loss. But I'd just run 3' place on the 400meters National Championship :cheer:
Just started PGCE (teacher training). The educated people of that place found 'white masses or some kind of thing' on Xrays, did loads of tests and within a week I was on chemo therapy, and a high (200 gr a day!) protein diet. The little bit of oedema I had turned in an awful lot of oedema so by the time they decided to do a biopsy which went wrong quite a few times (without result) They decided they give me 120 mg Prednison, Indocit and all the other things I forgot, cos it must be some kind of immune disease. In the Netherlands at that time there is a difference when you are in or out of full time education concerning your health insurance (I did only find this out after I received dad's kidney of course) The learned people never gave me diuretics cos they could damage my kidneys. After 3 Months I couldn't walk anymore as one of the bodged biopsies had caused bleadings in my back etc, chronic tummy ache, and they added Ranitidine. I could go home cos nothing they could do." Two year or something left" so my mum was told.
Two days home, and I was brought into a bigger hosp by ambu with 2 legs with thrombosis. In that hospital the learned people put me on a heparin pump but forgot to check a few things (I'm sure they only did their best) and I ended up with a brain hemorrhage and a stomach bleed.
That's when I got the hydro cephalic (as the ventricular drains in my head were blocked) and the ventricular drain placed in my head.
And my first ever gastroscopy. I was in a coma for not too long (5 or 10 days) Hell for family but I only vaguely remember the time after that.
Before receiving dad's kidney they did another gastroscopy to check if all was still dandy in there. All other ones the learned ones wanted me to do were politely declined by me.
By that time I had seen too many people being wheeled into rooms for invasive tests to proof the obvious. And although the internet wasn't about (for me) at the time ('85) I had started my 'research program' cos I had decided I wanted to live, and it might not be a good idea to just leave it to the learned people alone.
So I was on Ranitidine for most of my transplant years in the Netherlands. In the UK that was changed into Omeprazole. I stopped that every time I was long enough 'healthy' to replace it with a jug of warm milk at night. Stopped the milk when I found out the 5 or 7% of allowable meat content of milk is puss from mastitis in cows.
Longterm use is longer than a year according to patient leaflet.
And thanx for asking me MM. It took me more than 34 years to be able to write this beginning piece of my life change 'on paper' without becoming upset or emotional (no no no Diazepam either :angel; )
Love, Cas
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Also my near litre a day of coffee will be reduced to just one delicious cup.
Better break out the expresso machine (or find a used one) and turn that into four delicious thimble full shots... Good luck cassandra .
Yup Iolaire, the 5 or so double espressos are to become 1 espresso a day.
Love, Cas
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Yup Moosemum today really is spring. It's lovely. Was great seeing MIL sitting in the garden.
Thanx for asking. I hope you had a spring day too?
:cheer:
Love, Cas
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Oh my, Cas, that's an incredible story. I am relieved that you didn't think my questions were too intrusive. I always worry about that.
I hate it when I hear healthy people refer to chronically ill people as "brave". It has this weird implication that "Oh, you're brave, so you can handle all of that, whereas I'm not THAT brave, so that won't happen to me." It's a meaningless, pithy remark. And it is based on no knowledge whatsoever. My son, when he was just a wee lad, was diagnosed with autism, and many of the other parents at school would look at me with that drippy glance and tell me how "brave" I was. They didn't know about the 3 AM crying jags or the lonely depression I obviously hid so well.
But in saying that, you, Cas, have had to be brave to be able to function with any normality at all. And for you to be able to write this after 34 years....well...that says a lot about you. You're my hero.
If there is EVER anything I can do for you, please let me know. Now, go have that once-a-day espresso.
:cuddle; :cuddle; :cuddle;
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Yup Moosemum today really is spring. It's lovely. Was great seeing MIL sitting in the garden.
Thanx for asking. I hope you had a spring day too?
:cheer:
Love, Cas
We've had too much rain. The river jumped its banks, and our basement got water in it. Happens every year now. Big pain in the derriere. Other than that, my garden's English bluebells are blooming!!!
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See? My darling MM "the English Bluebells are blooming". Just look at the positive things.
I do hope they find a solution for your basement though. In England those banks usually break their banks cos the council has allowed building in the flood zones. Or stopped paying for pump services at some location. Whenever you find out, write, start a petition, get environmental organisations involved, as it's unlikely your flooded basement is the only one.
Lots of love, luck and strength, Cas
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Wow, Cas!! You have really been through it! I am so glad you are here to share your wisdom! And good for you for taking your health into your own hands. People really don't do that enough!
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See? My darling MM "the English Bluebells are blooming". Just look at the positive things.
I do hope they find a solution for your basement though. In England those banks usually break their banks cos the council has allowed building in the flood zones. Or stopped paying for pump services at some location. Whenever you find out, write, start a petition, get environmental organisations involved, as it's unlikely your flooded basement is the only one.
Lots of love, luck and strength, Cas
EEK. I gave the wrong impression in my post; I was sort of in a hurry. The river breaking its banks had nothing to do with water in my basement; we don't live that close to the river. It's just that everyone who has a home in my area also has a basement, and basements are notorious for getting some water in them when it rains really hard for a long period of time. The ground becomes saturated, so the excess water has no where to go. It's just a function of where we live. But I have to say that it seems that now not a year goes by without getting water in our basement. It's always in certain areas in certain rooms. One corner of my laundry room and another corner of my home office area are notorious.
Still, I have blooming bluebells! I planted many in my wooded back garden years ago, and they put out foliage but no blooms. Over the past few years, I've cut down some trees and limbs, so there is now more sunlight back there, and I am hoping that over the next few years, I'll have more blooms.
Bit of topic, I know. Did you have your espresso yet? Are you feeling a bit better?
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Bit of topic, I know. Did you have your espresso yet? Are you feeling a bit better?
Yes thanx MM I'm feeling pretty good. Still managed to put a new PAK (filter system thing you have to put in the Pureflow dialysate system from Nxstage (awkward and heavy) not much else, but I drank and really, really enjoyed my 1 espresso (Italian).
:angel;
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And good for you for taking your health into your own hands. People really don't do that enough!
Thanx Smartcookie, I agree that when people are able to do it they really should. But even I could only do that when I had recovered enough, and only than could I find enough energy to go to places, and only than was I lucky enough to find people to find the right doors to kick in to ask questions and find answers.
Like when I was needling myself to do D in the hosp yesterday (yesterday? Wow time flies by) a newish (4 weeks) PD kid came in the (small) ward. He looked exhausted. Nurse asked how he's doing. Boy answers that he's not feeling too good. Nurse says that his bloods are fine. Boy says he's not sleeping too good either. Nurse suggests to increase fill volume. Boy says he's unsure.
At that particular moment I have to bud in. So I ask the nurse if it might not be an idea to try him on tidal? Nurse starts calculating.
And I ask the boy if has restless legs too? Like from your neck down to your calves? He says yes.
I advice him to ask his GP (PC in US?) to prescribe Diazepam as it settles the RLS, reduces the anxiety so you can get some sleep.
He wrote it down, including the IHD site I informed him about, so I hope he does.
I just mean, he was lucky to bump into me. ::). He might one day get to do both things. Might be lucky to find a GP to prescribe Diazepam,
It's really not always as easy as it sounds. Patients in general are vulnerable. And the whole system of health care in (I still think) most places are nearly 'geared' up to that. Like: our job is important and it's easier to do my job properly if you shut up, listen and do as I say. So patients become programmed to be dependend.
I'm sorry smartcookie, I didn't really want to go on about the whole healthcare system here, I know there's an actually some good ones too. I know you try only your best too. I am proud of you and think you are fantastic for being on this site in the first place. Your thread ' ideas for better outcomes' is ingenious.
It's not only patients's health that would benefit, it's the whole system's.
Phew, sorry, it was not supposed to become a whole speech, but there you go :angel;
Love, luck and strength, Cas
Love, Cas
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Had your daily espresso yet? Was it yumtastic? How are you feeling today?
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:cheer: :cheer: :cheer: :rofl;
Yes oh yes MM I of course have had my Italian (again) espresso (with a tat if cream to make it last longer)
How's your rain problem?
Love, Cas
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It is a stunningly clear and beautiful day today without a single cloud in the sky. It's cool and windy, so I've opened the French doors leading out of the basement in the hopes that lots of fresh air will help dry things out.
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Good news!!!! Must be lovely seeing the sun !!!
:cheer:
Today I've learned that I can only drink my espresso AFTER my lunch (2 crackers
With pâté.) This pain is not worth it.
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Yeah, Cas, I can see where it might take some experimentation to see what (and when) you can tolerate something you've ingested.
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You are absolutely right, Cassandra!! You have to be at a certain place to take control of your health. I just get so frustrated with some of my patients who are content to sit back and let everyone do it for them. I have started doing transplant referrals at the clinic since we are short a nurse, and my patients have a hard time telling me where they even want to be listed!! Ugh!!
Enjoy your espresso!! You have definitely earned it!
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Well I've got an operation date in The Royal Liverpool for next Friday. I'm a bit apprehensive (scared doesn't fit here) but the pain in my poor old fistula arm is getting too much, and it's so deformed that I can't look at it without feeling sick. Still exercising with the balls (there's still 4 balls left from the 6 I bought and the 2 the nurse gave me) and added some physio exercises I found for lymphedema.
But the operation has to happen sooner rather than later.
And of course it will all go fantastically well.
And I've slowly increased my espresso intake from 1 to 3 which has made me a lot happier.
I am allowed to use a little Tinzaparin again, but I'm not prepared to take that risk just yet.
And I spoke to the surgeon (last Friday while I was in bed at home, but that's for a later story) and he said they don't usually use blood thinners with this kind of operation...O, okay.
Love y'all, Cas
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I hope it goes well for you, Cas..
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Thanx KaS
:cuddle;
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Hi, Cas:
Now, I believe that the technologies, information and medications are amazing. Hope everything will be ok with your Procedure.
Best wishes.
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Hoping all goes well with your procedure. I'll keep you in my thoughts.
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Thank you Andrea and Michelle
:cuddle;
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Espresso makes me think of a lot of things. I 'used' to have my own machine thing built alongside my coffeemaker. I lost it when the heater pad on the coffee side decided to melt down and start on fire. Wife freaked. I simply unplugged the unit, turned on the sink water, and used the sprayer to soak it down putting it out.
I haven't found a replacement machine yet. Wife bought me another coffee maker, but this one instead of an espresso maker on the side has a single cup coffee maker, which I use daily.
But I miss having an espresso once in a while.
I 'used' to have far more, some days taking the machine to work and happily 'buzzing' along all day. Seems like in no time it's time to go home.
The problem with doing that was my heart would start skipping beats, like missing one in three. That's a strange sensation.
I found water quality to make a big difference in taste. Our very hard limestone water isn't that bad, but could be far better. I installed a reverse osmosis unit under the kitchen sink and a third water tap for the purer water to use for coffee. I no longer have to 'clean' the lime accumulation out of the maker water heater.
My point is, I am wondering if any of you are using water from your 'Pure Flow' for making coffee?
Or have you even thought of it?
Until I get another machine I cheat. I add a heaping teaspoon of the powdered espresso mix to my cup of coffee every morning as I sit and write this. It's better than nothing but NOTHING near the same.
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:rofl;
I'm going to call tech support to check that. Good idea Charles
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So now waiting on the ward for my bp to start behaving. First time 230/110 after Doxazosin (sp?) 210/110, so another Doxa. Anesthetist been round with the same irritating questions like since when are you on renal replacement? Me: Isn't in my file? Anyway if BP hasn't dropped in an hour, I can have a Diazepam. Mmmm, nice breakfast. Just wish this op was over and done with.
:cheer:
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I hope all goes well and according to plan.
The VA made me an appt for a fistula-gram Wed the 16th. Dr say mine isn't near ready yet. He expects he will have to tie off some collaterals (?) and possibly balloon other areas.
I'm not in any hurry. That needle thing. I love this cath.
Dr says I can't keep it. Bad things could happen. Infection, blah blah.
I told him that something has got to kill me, otherwise I might live forever!
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Thanx Charlie, but (super) surgeon just came round to tell me that he won't operate on people with BP's like that. I agree :angel;
Should have had BP meds ages ago. So he's arranging nephrologist from this hospital to sort me out.
Than wait for new appointment with (super)surgeon.
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So sorry you are delayed. If you're anything like me, you have to whip yourself into readiness and then they say "no." I've have high BP for years (not quite as high as what you're reporting. A fairly small dose of Metoprolal brought is way down, fast. Best of luck, Cas..
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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. :-* :cuddle;
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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.
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Medicine, unfortunately, isn't an exact science. Do you have any idea what might be different that is making your BP rise?
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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
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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.
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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
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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.
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CAS-sounds like you've been going through hell...I hope everything works out soon!
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My thoughts are with you, Cas.
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hi Casser. i'd come visit if i could just to say hi . Thank you .
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Thanx for all your sweet words MM, Xplantdad, KaS, and Blake. Makes me feel so much better.
:cuddle;
Love, Cas
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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.
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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 :grouphug;
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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
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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.
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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!
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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 :laugh: 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
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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! :flower;
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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
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I bought a cheap stethoscope from Amazon so I could hear it (don't knock those cheap things :laugh: I can hear it)
LOL. "Can you hear me now?"
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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.
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Cassandra, you are an inspiration to me. I am learning so much from following your progress.
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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 :laugh:
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
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Cass, does the paracetamol work well enough for you? Does it keep you relatively pain free?
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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
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I want to know more about being 'geriatric' simply because you are 'over 50'.
If this is so, then what am I? I think I am still a 'kid' at almost 64!
When I get old and losing my hair
Many years from now
Will you be sending me a Valentine
Birthday Greeting, Bottle of Wine
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I think most people think over 65 being "geriatric." I don't think that at all. It depends on the person and how they are doing. BTW, I love that song! My hubby and I are big Beatle fans!
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I want to know more about being 'geriatric' simply because you are 'over 50'.
Sigh, Charlie honey, my SKIN is geriatric because Renal Replacement Therapy for most of my life, and the other treatments and miraculously actually reaching an age over 50 do make my skin look very old (especially on places where surgeons have been 'having a go' like my arms)
Me personally still think I'm a girl. An older girl though. And it's getting harder every day to keep fooling my self. And I'm proud to have made it to being old.
What's wrong with old anyway?
:angel;
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Nothing is wrong with old, that's what! My hubby is going grey prematurely, and he looks devilishly handsome with it! I walk like an old woman with my back, but I am mostly pain free and can actually walk! So who cares? Age is a number, that's it.
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Nothing wrong with 'fooling yourself' a bit. Personally, I enjoy fooling around. Being a fool actually comes quite easily, after all, I am a 'Guy', and not yet an old one. Or so I keep fooling myself into believing! My body, often has moments of disagreement, some of which last for days at a time. Fortunately, none of those times has killed me, yet.
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Yup fake it till we make it ;D
Today I managed to get myself on and off all by myself. Hubby back to being hubby.
He cooked today though, I'm not stupid
:angel;
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Yup fake it till we make it ;D
Today I managed to get myself on and off all by myself. Hubby back to being hubby.
He cooked today though, I'm not stupid
:angel;
;D
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And finally today I have a date for "bringing to the surface' of the new fistula :laugh:
Fantastic she sais. It's next Tuesday 6' March. I'm slightly apprehensive to say the least.
To be continued. ;D
Love, Cas
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Hello Cas,
I wish you good luck for next Tuesday and hopefully everything goes well and I keep my fingers crossed.
Best wishes from Kristina. :grouphug;
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And finally today I have a date for "bringing to the surface' of the new fistula :laugh:
Fantastic she sais. It's next Tuesday 6' March. I'm slightly apprehensive to say the least.
To be continued. ;D
Love, Cas
I suppose this is good news, although I do feel apprehensive on your behalf. I'm sure everything will go well. I look forward to hearing from you once the procedure is over and how you are doing!
This thread is a tad old, and I'm sure I've missed something along the way, so could you refresh my memory and tell me where the new fistula is? My apologies for being a bit thick.
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Best wishes to you, Cas. I hope it goes without a hitch. Keep us posted.
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Great luck to you, Cas!
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This thread is a tad old, and I'm sure I've missed something along the way, so could you refresh my memory and tell me where the new fistula is? My apologies for being a bit thick.
Thank you Kristina, MM, KaS and Xplantdad your well wishes mean a lot.
And MM I'll remind you. The new fistula was created in my left arm. That arm had the cephalic vein removed (previous fistula) This one goes from above elbow to arm pit.
Thanx again, love y'all, Cas
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I'm not sure what I'd do.. My fistula was made in 89...So nearly 30 years old.. It works.. Recently new consultants wanted to do new buttonholes/locationes etc.. There is quite a lot of calcification, but not impossible.
I've known patients to have a leg graft.. A lot of bleeding..
But if there's a way.. Coming onto the thread a bit late.. I haven't been on here for ages..
But much luck....
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Nice to "see" you again, JW77!
Cass, thanks for the reminder. You've certainly been through the wars, haven't you!
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Cass, thanks for the reminder. You've certainly been through the wars, haven't you!
Yes lovely to see you JW77 :cheer: and thanx.
And MM that's my problem. More than 50 surgeries and that's just the ones under general anaesthetic. I must be running out of luck at some point.
I've actually bought myself a pretty expensive relaxing candle. The scent of that and some extra Diazepam will have to get me through this week :angel;
Love y'all, Cas
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Amazing how at 18, I thought of 30 as one foot in the grave. Now, I look at people who are 30 and think how young they are. Also remember thinking anyone over 30 knew very little, as I had all the answers. Now I think they were remarkably well informed.
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Cass, thanks for the reminder. You've certainly been through the wars, haven't you!
Yes lovely to see you JW77 :cheer: and thanx.
And MM that's my problem. More than 50 surgeries and that's just the ones under general anaesthetic. I must be running out of luck at some point.
I've actually bought myself a pretty expensive relaxing candle. The scent of that and some extra Diazepam will have to get me through this week :angel;
Love y'all, Cas
Sorry to be late with this Miss Cas but hope your fistula surgery went well. Hope you are resting and when you feel up to it, can give us good news. I use to keep a small lemon/lime candle to carry around just to take a whiff of whenever I needed a pic-me-up. Mobile pocket aromatherapy. Does wonders for the mood. Especially when stressed. Need not be lit, just sniffed. Create yourself a collection of "moods" you want and various states of being and enjoy! Hurry and heal up! Take care. Will be thinking of you. :angel;
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Amazing how at 18, I thought of 30 as one foot in the grave.
I am a bit disappointed - my state's government just relegated me to "elderly" status.. If someone assaults me, they get an extra charge because I just turned 60.
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Sorry to be late with this Miss Cas but hope your fistula surgery went well. Hope you are resting and when you feel up to it, can give us good news. I use to keep a small lemon/lime candle to carry around just to take a whiff of whenever I needed a pic-me-up. Mobile pocket aromatherapy. Does wonders for the mood. Especially when stressed. Need not be lit, just sniffed. Create yourself a collection of "moods" you want and various states of being and enjoy! Hurry and heal up! Take care. Will be thinking of you. :angel;
Hi PT thanx for asking, but I'm back home cos the anaesthetist wanted updated haert scan and ecg. Than surgeons in transplant surgery. So I'm back home, no pain, knowing that my heart is as good as it was before second fistula was created. And await the next date. 😷
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That's good news about your heart health!
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That's good news about your heart health!
Thanx MM I think so too
:cheer: :cheer:
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That's good news about your heart health!
Thanx MM I think so too
:cheer: :cheer:
One way of keeping medical staff on their toes is to show up as if you are there for an appointment, making them realize they are not adequately prepared to perform a procedure and having to reschedule you. Good job, Miss Cas! Tell them next time won't be a drill. ;)
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I have the new date for a week or so, and have been pretty good in pretending it's not actually happening. I was informed by one of the surgeons (not the one who'll be doing me ;D ) that it's going to be very painful. Yeah, but don't we have morphine for that? I replied. The pump that I just use at will? It still is going to be very painful she kept saying. So I left it at that.
I have to go in the 5' of April. Favourite vasc surgeon is scheduled to do it probably the 6'.
So now I'm wondering how I'm supposed to put my needles in with my left arm with two long cuts and stiches in? Hubby is really not going to do that. I suppose I'm going to need a slot in the clinic or the hosp.
Anyone?
I don't want anyone to mess up my BH's before the left arm can be used.
And how long does it take for this 'changed location' fistula to be usable?
I asked of course in hosp, nurses, drs, they don't know either. The closest I got to an answer was: probably not as long as a newly created fistula.
If anyone knows who's had a fistula moved from one side of the arm (armpit to inside elbow) to the other side (biceps area they said) please enlighten me.
;D
I'm trying to be prepared :cheer:
Love y'all, Cas
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Prior to Wife's lumbar puncture I placed a strip of one of my 5% lidocaine patches on the site to pre-medicate and help numb the area. Afterwards she told me she didn't even feel the needle stick.
Perhaps prior to admission for your procedure you can paint the bicep inner and outer with that same 5% lidocaine used to numb prior to clinical treatment that other use, wrapping to painted area with plastic to keep it there. Once in the hospital unwrap and wash it off. Viola! Pre-medicated, slightly numbed. Hopefully the procedure won't be near as painful.
I like fentenyal, no brain cloud, and it works very well to mask pain. Morphine IV works O.K. but still clouds my head. I often feel like I could have done just as well with a bunch of alcohol, and maybe would have enjoyed drinking it as it has been a number of years since I've fallen off that wagon.
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Dearest cass, I have no answers for you; Charlie seems to have a good idea or two that may help you.
What I DO have is lots of good wishes and crossed fingers for you! I'm glad you got a date now that everyone knows your cardiac health is OK!
Why do you think the surgeon kept banging on about how painful it was going to be? I mean, yeah, we get it, but is there something about this particular procedure that causes particular pain? I don't understand.
I DO understand why you'd be hesitant to go to a clinic, concerned your bhs might be messed with. That's a conundrum.
I look forward to reading posts from IHDers who are much more informed about this that I am. Those are all really interesting questions.
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Thanx Charlie and MM for the tips and the good wishes.
And MM I really don't know why she did that.
And for the incredibly good news: Hubby offered to try needling me this week (he's free for 4 days) so he's 'ready to go' when I need him!!! Sweet or what.
Love y'all :cheer:
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:banghead; Don't give up. There is hope. Have you thought about getting a cycler instead? I did hemo for two years, and my two fistulas failed. My veins are too thin so I went on PD. I think leg fistulas appear like painful setups, at least, that's my experience from doing hemo for two years in a busy center. PD takes up more time, but it's easier on the body. Talk it over with your doctors and nurses, and other patients in your center, and you might learn something to help you make that tough decision. God bless you, and I pray you learn to adapt and thrive.
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Thanx Whamo for your encouragement. I did 5 years PD before hemo. I 'loved' it, but my peritoneum burst, so that was over. I doubt if PD would ever be possible again. It's okay though. I'll try to stay possitive. It must go alright. I'm incredibly grateful for all the strength and love and warmth I get from all of you.
Thank you, love y'all, Cas
:cuddle;
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I recently read that the USA is experiencing a shortage of injectable morphine sulphate. Some hospitals are wanting to cancel elective surgeries until the shortage is remedied. Have you heard anything like this happening in the UK? Is that why she was maybe trying to prepare you for it to be painful? Maybe she was trying to hint about a shortage of paid meds?
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Dear Cassandra,
I do hope everything goes alright for you on the 5th of April and I shall be thinking of you and I certainly hope, that it is not so painful ... In any case, I shall be thinking of you and wish you good luck!
All my best wishes to you from Kristina. :grouphug;
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I recently read that the USA is experiencing a shortage of injectable morphine sulphate. Some hospitals are wanting to cancel elective surgeries until the shortage is remedied. Have you heard anything like this happening in the UK? Is that why she was maybe trying to prepare you for it to be painful? Maybe she was trying to hint about a shortage of paid meds?
Oops...meant "pain" meds.
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I recently read that the USA is experiencing a shortage of injectable morphine sulphate. Some hospitals are wanting to cancel elective surgeries until the shortage is remedied. Have you heard anything like this happening in the UK? Is that why she was maybe trying to prepare you for it to be painful? Maybe she was trying to hint about a shortage of paid meds?
Bugger, according to dr.Google Morphine is here on the shortage list too!!
I'l give the coordinator a call. If so I might reconsider .......
And thanx Kristina for your well wishes and thoughts
:cuddle;
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While inject-able morphine does work better for me than the morphine pills that merely make me physically sick and feel drunk but still in pain, I much prefer when the Anesthetist uses Fentenyal. NO drunkenness and the pain just disappears, depending on how much he uses.
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Like Charlie, I would bring up Fentanyl or ask what would they use if they are short on injectable morphine. If they have a good injectable alternative and it was me, I wouldn't put off surgery. If they said they'd give me Tylenol 3 or Codeine, I'd say forget it. I'd want something good (strong) for during the actual surgery. Please let us know what you find out. Hope it goes well for you, really really hope it does. :cuddle;
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Thank you friends, so far no one has rung back. I will try again tomorrow, and use your advice of Fentanyl.
I don't remember ever getting that. I'll definitely keep you informed.
Love y'all, Cas
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Enough Fentenyal you would laugh in their face while they cut out your liver. It works that well.
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Enough Fentenyal you would laugh in their face while they cut out your liver. It works that well.
.
:rofl; :rofl; Thanx again Charlie ;D
A nurse rung saying: they had not been informed of a shortage....
Okay than, I'm bach to pretending it's not happening to me, and maybe I'll ask for Fentanyl anyway.
:angel;
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Today I woke up with bowel cramps and diarrhoea so operation canceled.
:banghead;
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Bummer! Get well quickly.
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Thank you KaS
:cuddle;
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Dear Cassandra,
I am so sorry about the cancellation, but you know, sometimes such cancellations could be a "good thing" for better things to come along. I was once scheduled for an operation and then it was cancelled and in the end it was good luck, because my "case" was a bit complicated to operate on and so I had to wait for the most experienced surgeon to "do the job" and in the end I was extremely luck with the result, so ... all of my waiting was really worth it in the end, even though it did not look like that at first, when I almost felt as if the "whole world" was unitedly conspiring against me whilst I was waiting...
I wish you good luck and keep my fingers crossed for you. :bestwishes; from Kristina and :grouphug;
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Hope you feel better soon, CAS!
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Today I woke up with bowel cramps and diarrhoea so operation canceled.
:banghead;
Are you feeling any better today?
Do you know how long it will take to get a new surgery date?
I am so sorry that you've been unwell and have been forced to cancel. How incredibly frustrating. :banghead; indeed!
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Thank you all, my sweet friends. Yes I'm feeling a bit better. I might even be able to dialyse today. ;D
I have no idea when their next date will be. I'm only a bit worried about the difficulty I have getting the needles in.
At last I found an article about how long it takes (if all goes well) before the transpositioned AVF to be used: 2 to 3 months.
https://www.sciencedirect.com/science/article/pii/S0741521409014852
:cheer:
Love y'all, Cas
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By coincidence my yearly appointment with the Transplant surgeon was with my super Vasculas surgeon. He was worried again about my heart, so I received a date for the op.
8' May admitted, 9' May operation.
Love, Cas
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:cuddle;
We will all be thinking of you on that day! :grouphug;
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Update: I'm back, no operation happened. I was Nil By Mouth from 23.00 Tuesday. Scheduled for 08.30 operation. 'Enjoyed' decontemination shower, had talk with anaesthesist, and than: Mr 'rubbish veins' shows up.
TBH I didn't recognize him straight a way. Only when he grabbed my 'still useable fistula arm' which I had completely covered with permanent black marker : NOT THIS ARM. Only when he said with a smile: "so we are making a graft then" did I recognize him. I janked away my precious arm, told him what the plan is. And that I was waiting for 'super' surgeon.
He looked at the arm in waiting of fistula transposition, and said:" did they do a venogram?" No they hadn't. TBH I had asked 'super' surgeon about this, but after all the u.s. Scans I forgot about it, AND I think there won't be a narrowing in that vein as my arm is not swollen at all. The previous (still used) fistula-arm was swollen after day 2 of its creation (with severe narrowing) and still works 20 yrs later.
Anyway, I was sent home, awaiting appointment venogram. It's just 09.00 now, so I'm calling the coordinator.
:banghead;
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Dear Cassandra, I can't tell you often enough, how sorry I am about what you are going through! There you have all this "loaded" on top of it all, as if dialysis-treatments are not already stressful enough for body and soul ... Could you ask for some assistance from one of the hospital-social workers who perhaps could help you and also speak on your behalf as well, so you don't feel too much left on your own with all this?
I can well imagine that the stress must be immense and I do keep my fingers crossed for you and do hope this is going to be sorted as soon as possible.
Take great care and I send you my best wishes from Kristina. :grouphug;
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Thanx Kristina, apparently there's no social worker, but I spoke a HHD nurse who told me to put it in writing and he would find ......., all very sweet, but the whole thing is, is that it's just not a good idea to put a complaint in writing about a surgeon. My mum complained about a surgeon who was going to 'do' me, and all sorts of things went wrong, from stitching to the use of meds I was (in med file) allergic to. It doesn't matter really, you are lucky, or you're not. And maybe I was lucky anyway, maybe the venogram will show them such a good way to transposition this fistula that.....
And maybe my heart will only get stronger by having so much pressure from two strong fistulas simultaneously.
I'm just going to enjoy my double espresso's now 😆
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Prays sent.
I have to think that maybe there is a Silver Lining to this cloud. That the venousgram will give the surgeon better information that will enable him to have a better outcome.
Old saying, "Good things come to those that wait."
Your patience will be rewarded.
We are going through a similar delay with the Wife's head surgery. It has been MONTHS, but a date has been set for this upcoming Tuesday, FINALLY.
Yesterday the Labs came back saying she has yet another UTI, that surgery MAY BE rescheduled. Started a newer heavy antibiotic last night. Fingers crossed she P's clean by Tuesday.
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O Charlie, thanx for your prayers, and I'm keeping everything crossed that your wife will have her surgery on Tuesday.
:cuddle;
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Update: I'm back, no operation happened. I was Nil By Mouth from 23.00 Tuesday. Scheduled for 08.30 operation. 'Enjoyed' decontemination shower, had talk with anaesthesist, and than: Mr 'rubbish veins' shows up.
TBH I didn't recognize him straight a way. Only when he grabbed my 'still useable fistula arm' which I had completely covered with permanent black marker : NOT THIS ARM. Only when he said with a smile: "so we are making a graft then" did I recognize him. I janked away my precious arm, told him what the plan is. And that I was waiting for 'super' surgeon.
He looked at the arm in waiting of fistula transposition, and said:" did they do a venogram?" No they hadn't. TBH I had asked 'super' surgeon about this, but after all the u.s. Scans I forgot about it, AND I think there won't be a narrowing in that vein as my arm is not swollen at all. The previous (still used) fistula-arm was swollen after day 2 of its creation (with severe narrowing) and still works 20 yrs later.
Anyway, I was sent home, awaiting appointment venogram. It's just 09.00 now, so I'm calling the coordinator.
:banghead;
Good for you waiting for only the best surgeon!
I have had the good fortune to have a wonderful surgeon both with his surgery talents and his bedside manner. I needed major work done to my fistula about a year ago. I wanted a revision to the fistula (straightening and pulling to the surface). Based on my scans, he didn't think it would be possible. He recommended a graft (in same arm) or a fistula in the other arm. I flat out refused the new fistula, and asked that he try to fix my fistula. But that I would be okay with a graft if he couldn't fix my fistula. I woke up to an 18 inch scar up my arm, but my fistula was revised and is lovely!
Hopefully your venogram will give them some good answers!
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I woke up to an 18 inch scar up my arm, but my fistula was revised and is lovely!
That's a first. Referring to a fistula as "lovely."
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My initial fistula wouldn't develop well enough. Repeated angioplasty still couldn't get it to grow. Revision, bringing it nearer the surface and removing a narrowing and it is working much better.
Scar the length of my left bicep doesn't look bad at all.
Since I am one of those 'Guys' I wouldn't call it lovely, but not bad.
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I'm not liking this particular plot twist, Cass!
Dearie me. Ugh.
Please let us know when your venogram appointment is, OK?
I can't believe you had to see that awful Mr. Rubbish Veins! How dare he even approach you at all!
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Sigh, received info for next surgery trial date for next Friday, to be admitted Thursday.
So bloods were picked up yesterday, and now my Calcium is too low. Tomorrow I'll go into my normal hosp to do a session and get a Calcium infusion.
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Sigh, received info for next surgery trial date for next Friday, to be admitted Thursday.
So bloods were picked up yesterday, and now my Calcium is too low. Tomorrow I'll go into my normal hosp to do a session and get a Calcium infusion.
Hello Cassandra, good luck wishes are coming your way from Kristina and please take great care.
Hope to "see" you soon and all the best wishes again from Kristina. :grouphug;
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Thank you Kristina
:cuddle;
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Obstacle after obstacle. Phooie. I hope you can finally get this over with--successfully. Good luck, Cas.
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Hope everything goes okay Cassandra! :grouphug;
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Sigh, received info for next surgery trial date for next Friday, to be admitted Thursday.
So bloods were picked up yesterday, and now my Calcium is too low. Tomorrow I'll go into my normal hosp to do a session and get a Calcium infusion.
Wait, what? By "surgery trial date", do you mean a provisional date? Does your low calcium mean your date might be postponed again?
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Thank you Xplantdad and KaS for the good wishes and MM if the surgeons don't want to touch me, they don't want to touch me. I think it'll be okay this time.
Just a bit annoyed with myself. I posted at least 2 articles about Phosphates and Calcium plunging through the floor when you dialyse more days. And I had to D more days as I could only D for 2 hrs without Tinzaparin after the stomach bleed. And I forgot to increase my Alfacalcidol. Ofcourse I could have been lucky and one of the Learned ones ......, but tomorrow might do the trick.
:angel;
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Oh, OK, I understand now.
Good luck to you, and thanks so much for keeping us updated!
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Thank you Xplantdad and KaS for the good wishes and MM if the surgeons don't want to touch me, they don't want to touch me. I think it'll be okay this time.
Just a bit annoyed with myself. I posted at least 2 articles about Phosphates and Calcium plunging through the floor when you dialyse more days. And I had to D more days as I could only D for 2 hrs without Tinzaparin after the stomach bleed. And I forgot to increase my Alfacalcidol. Ofcourse I could have been lucky and one of the Learned ones ......, but tomorrow might do the trick.
:angel;
Hello Cassandra,
I was just reading ... and you mentioned a stomach bleed because of Tinzaparin?
Only 2 hours of Dialysis on more days during the week, so you can avoid taking Tinzaparin? How was it diagnosed? Did the medics tell you that Tinzaparin can cause problems with stomach bleeding? Is there an alternative toTinzaparin?
I feel very sorry for you and I am thinking of you and I do hope you feel better soon. :grouphug;
Please tell us more about it please. I have been taking Tinzaparin for a long while now and recently I have been noticing that there is something developing that's not quite right and I have been wondering whether or not it is connected to my taking Tinzaparin? On the other hand I had no problems with it to start off with until now and I have been wondering, whether it really could be that there is a problem developing with it for me now even though I had no problems with it before?
Many thanks and hopefully you feel better soon and best wishes from Kristina. :grouphug;
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Thank you MM, and Kristina
I was just reading ... and you mentioned a stomach bleed because of Tinzaparin?
Only 2 hours of Dialysis on more days during the week, so you can avoid taking Tinzaparin? How was it diagnosed? Did the medics tell you that Tinzaparin can cause problems with stomach bleeding? Is there an alternative to Tinzaparin?
I don't think it's particularly the Tinzaparin causing problems. It's more the fact that: your body will react to your blood being in contact with the plastics constantly, and the use of medicins will cause some changes in your body. One of my bodies weaker parts is my stomach/oesophagus. So ulcers developed. Tinzaparin is necesarry to stop your blood from clotting. Your blood reacts to the plastics and clots.
Some ulcers in my oesophagus started bleeding, and because the Tinzaparin stopped the blood from clotting it became a serious bleed. The wounds would start bleeding again if I were to use Tinzaparin, so I was stopped from using it, so my stomache lining/oesophagus etc could heal. But my blood would clot (even with saline flushing every 30 mins) when dialysing 2,5 hrs, so I shortened my sessions to 2 hours. And increased the amount of days.
Everything has consequences, things need balancing out, it's hit or miss with a lot of things (concerning our bodies and life as a whole I suppose) I was actually surprised when one of my nephrologists said: "I have no idea how this will effect you as you have no kidneys at all". I'm just an experiment, but an experiment still living a life after 34 yrs RRT,.... I'll better be okay after Friday ;D
Love to all, Cas
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Many thanks Cassandra for your kind explanation. It is very true when you say, that it is "hit or miss" with many things and it is somehow an experiment and we just have to find our way by trying as best as we can. Unfortunately, sometimes it all becomes just a little tiring, but it is so good to come here and exchange our experiences. I shall keep an eye on the Tinzaparin and hopefully it won't attack my stomach. I do hope your nephs find a way for you very soon !
Is there an alternative to the Tinzaparin or could the same "thing" happen with other anti-blood-clotters as well?
Many thanks again and best wishes from Kristina and hopefully you are feeling better soon and please let me know how you are going on. :grouphug;
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Hi Kristina, it was the Cinecalcet that caused the stomach/oesophagus problems. I had problems there before as a kid due to chemo and massive amounts of Corticosteroids, hence the weak spots. Tinzaparine just caused the bleeding not to stop as it's a blood thinner.
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Now back from D and infusion with Calcium Gluconate. All went well. Adj.Calcium now 2.49 and phosphates even lower at 0.66 so I've just enjoyed a huge yoghurt and Topic chocolate bar without a single Renagel. :laugh:
I read up on the Calcium Gluconate which apparently lowers Potassium and Magnesium too. Just wondering why I wasn't told to eat some phospate/potassium rich food.
Fair enough, now I'm slightly worried about the amount of Phos I've just eaten.
Continues tomorrow.....
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Hi Kristina, it was the Cinecalcet that caused the stomach/oesophagus problems. I had problems there before as a kid due to chemo and massive amounts of Corticosteroids, hence the weak spots. Tinzaparine just caused the bleeding not to stop as it's a blood thinner.
Many thanks again Cassandra ! I shall keep a watchful eye on Cinacalcet & Tinzaparin and hopefully my body keeps going (touch wood !!!) until the transplant... whenever that may come along ... I do hope you feel much better and I send you my kind regards from Kristina. :grouphug;
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Dear friends I'm just back from hosp. And super surgeon did it again!!!!
:yahoo; He couldn't move it to the outside, so it goes from the inside of my elbow to my armpit.
But it works, and I hope to last for a bit longer. And yes 'rubbish veins' surgeon showed up first again, so I made a huge (really huge) scene till super surgeon came. I'll be back, arm is falling off.
Love, Cas
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So good to hear that you're done with this saga. Congratulations! (even tho your arm is falling off).
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Thank you KaS
:cuddle;
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What terrific news! Well done, Super Surgeon. Rubbish Veins doc is a waste of space. Good for you for sticking up for yourself!!
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Hello Cassandra and congratulations ! I am so glad for you and hopefully you won't have any problems like this again.
All the best and good-luck-wishes from Kristina. :grouphug;
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Too often, patients have no say in who their doctor will be, thanks to insurance companies and their "networks." The one thing I have found that helps is if you can find a good doctor, neph or primary care, ask them for suggestions. It seems routinely that the better doctors stick together and can give good recommendations.
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Thank you MooseMom and Kristina, and thanks for your suggestion Ga_Dawg but I'm in the UK, it's not down to insurance companies here.
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I'm in the UK, it's not down to insurance companies here.
Count your blessings.
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Hi sweet people, so today was the first day my 'new fistula arm' was thin enough to see that I have developped a pseudo-aneurysm where the intervention radiologist had messed up a fistula-gram (where a learned one sticks a catheter thing in the fistula in order to stretch a narrowing to improve flow) but went strait through.....
So now I'm trying to sort an other learned one to have a look, in order to get an appointment for yet an other operation to sort this out.
After waking up quite 'perky' (must have had the pefect REM sleep cycle) I now feel pretty deflated.
But am so incredibly grateful for the existence of this site, and all of you.
Love y'all, Cas
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Sounds nasty, Cas. I hope things go more smoothly for you soon.
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Dear Cassandra,
I wish you all the best of good luck and I do hope, "things" get better soon and hopefully you get a quick appointment to get it sorted.
Thinking of you and I send you my best wishes from Kristina. :grouphug;
Take care !
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Thank you Kristina and KaS :cuddle;
Tomorrow for Ultra Sound scan and see (yet an other) surgeon.
Love y'all, Cas
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Hello Cassandra,
I do hope your Ultrasound-scan appointment and your meeting with the new surgeon today went well ?
I keep my fingers crossed and send you my best wishes from Kristina. :grouphug;
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Hi Kristina, the scan went okay: the radiologist thinks it is an aneurysm (no problem, just don't stick needles in) or a pseudo aneurysm (problem) Duh. The surgeon was ill..... So now we're waiting still for a surgeon to have a look, and we'll know where to create two nice button holes.
Thanx for asking :cuddle;
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Just back from transplant clinic visit. Lucky again, got to see super surgeon. We had a good and honest talk. The aneurysm 'very most likely is a true aneurysm' so next week he'll look at the scans (as 'my' hosp is in another cgc (health trust) so he can't get into their system) the chance for me to get a transplant is less than 0.01%, and no it is really not poss to remove some para thyroids as I have way too many drains going through my neck (from head to heart after brain haemorrhage and hydro cephalus when I was a kid). Yes the Cinacalcet will keep causing the ulcers and might cause problems with perforations so we have to keep an eye on that....
Just live your life as well as you can.... I had to laugh then, duh
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I've just now seen the most recent posts on this thread. I didn't realize you were experiencing this kind of trouble.
I'm glad to see that you've been able to have a good discussion with the super surgeon. What happens next?
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Hi MM basicallyo nothing will change. I just hope I keep living. If someting changes as in a less aggressive Cinacalcet or something, he'll let me know. If a match comes up and I'm operable he'll find me. I don't have to come for yearly 'viewings' anymore I can stay away, but if I ever need to talk, or have a question, I'm welcome to come.
It was very hard on Hubby who untill yesterday believed the surgeons who kept saying to "stay positive". He had nightmares yesterday. That's what makes me sad. But I'll get him through it. (Apparently he does not want to be 'set free' ;D So we'll hobble on, the kitchen drawings have been approved by the council (nearly 1,5 years) and the building work will start in March next year!!! I can't wait for that to be over. Fancy a garden where I can get into all by myself!!!
Nearly Xmas.
Thanx for asking MM :cuddle;
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I don't think that asking for five more years is greedy. I 'd gladly settle for five, but three might be sufficient if I had the luxury of knowing. As you pointed out, you've gotten 20 good years out of this, which is more than most.
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Thanx enginist
:cuddle;
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The last 3 times a nurse came out to connect me with my new fistula. Twice went fine, third time (this morning) not so much. That’s okay I said, I’ll manage to use my old fistula, just need to soak the BHs a few hours. But it was not to be. Arterial ‘sort of’ fine. Venous was clotted. CLOTTED!!! So, tomorrow to hosp. Either trying the new one, or de-clotting old one. BTW I’m pretty sure it is because the Learned one decided to tripple my EPO.
:embarassed:
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Nb now enjoying a small lemon brandy in the hope to thin my blood a bit.
:angel;
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Lemon brandy? Oh, that sounds rather lovely!
I'm really sorry to hear you've had problems with your new fistula this morning. I am a bit unclear as to what actually happened. What was the problem exactly with your new fistula? Was that the one that clotted, or was it your old fistula that clotted? I don't think I've ever heard of anyone having two working fistulas (well, sort of working, any way). Is that common?
I'm really interested to hear what happens next, whether tomorrow at the hospital they'll try the new one or will de-clot your old one. Let us know, OK?
Other than all that, how are things with you? Have you been able to enjoy the spring at all? I hear the weather has been spectacular!
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Well I'm back. They first tried the new fistula, but it clotted. I tried the old fistula's venous button hole, but that was still clotted. The old arterial buttonhole still worked, so I dialysed with one needle for 4 hours. I'm happy I could D (with the big machines in hosp it's poss to D with one needle, I think it has 3 pumps or something)
Dear MM I have 2 sort of working fistulas because the old one is hanging on by a thread after 20 + years doing a good job keeping me alive, but it's so calcified etc that it's very, very dodgy. So Super surgeon managed to make a new one in my other arm, but it still isn't working reliably yet. I only know of Vt Big Rig who had 2 working fistulas (also transition from old to new) The Learned ones are not happy about it as the pressure on the heart is huge (well mine is anyway).
I expect to spend a long time in hosp on Monday, I expect a lot of scans to be made, and maybe a plasti on the new one (so it doesn't clot anymore, and maybe easier, and more reliable to use)
So now I'll continue to celebrate life with the last bit of lemon brandy (nb it's Dutch, I would think they have it in countries like Portugal too :laugh: )
Love you lovelies
:cuddle;
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cas, that is some major stuff! I hope they get the new fistula working and that you only need an angioplasty (what I call a balloon job). My husband gets those every few months or so and it keeps his fistula working nicely. Hope they address your splitting skin....that sounds dangerous, like a pseudoaneurysm. Please keep us posted. I send you well wishes and prayers. You are certainly one tuff lady!
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Cas, thanks for explaining all of that. That's what I thought was going on but wanted to be sure.
I'm sorry you have to dialyze in the hospital and spend so much time there, but at least that's a viable option!
I think you might need to sneak some lemon brandy into the hospital with you while you're being scanned and plastied...and plastered. LOL!
Only if you feel like it, please let us know how Monday goes. I'm very curious to know what they've found out and how they're going to fix things for you.
Take care of yourself! Good luck on Monday!
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Keeping you in my thoughts and prayers. You go girrrrl.
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Hello my Sweet People I'm back from hosp, and they've got my new fistula working again!!!! I'm so happy
:cheer: :cheer: :cheer:
Thank you friends for your good wishes, thoughts, prayers and vibes.
:cuddle; :cuddle;
Love y'all, Cas
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Truly, this news has made my day! :yahoo; I'm so pleased for you!!!
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So relieved to hear this cas! Hope you're able to plan out a nice week now with lots to do (fun stuff) and no delays. :wine; :thumbup; Enjoy!
Fixed smiley mod Cas
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Thank you MM and PT
:cuddle;
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Hi all, I stayed last week in hosp for intra venous antibiotics, and some more tests (the now pretty big wound on old fistula arm had become infected, and grew some more in size) As soon as the cannula was out of my leg (only reasonable vein) I went home. They (intervention radiologist, and vascular surgeon (super surgeon :laugh: ) don't know how to proceed as they'd overlooked my central stenosis. I actually had forgotten about that too, as : I just didn't want to know, and I expected it to be in my file (fair enough there's a lot of files with my name on it, and they're spread over quite a few hospitals)
Today I heard in clinic that the planned surgery this Friday is not going ahead. They want to think over, and discuss the situation a bit more. And do some more scans etc.
However in the mean time I've lost so much weight (not good really) and with the 3 or 4 hrs I could remove more fluids, so my old arm is slightly more usable so I reckon I can start dialyzing at home again next week ;D
Love y'all, Cas
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I see you're still going through the wars. Ugh. Good grief!
I'm glad to hear, though, that you may be able to start D at home again soon. There's that silver lining.
:cuddle;
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Thanx MM , I agree with that. I also started using manuka honey on the wound, and the neph actually agreed (because he doesn’t know what else to do I suppose)
:boxing;
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Sorry to hear about your recent hospital stay, Cas. Hope you are feeling better being at home. I haven't used Manuka Honey before so personally do not know if it works but if it helps (and not hurt or makes things worse) then I'd be all for it. Especially if it is the medical-grade kind. Guess it has to be special ordered. I'd also be cautious about any Hydrogen Peroxide in it -hubby's Endocrinologist said HP can kill skin cells. Anyway, I could see how Manuka Honey could help heal wounds. I was recently interested in it because of a wound from cellulitis still weeping. I might bring up the honey with my doctor. I use to have an old friend of the family that was 100% Lakota Indian. He was a Marine Biologist and my former track coach. A wise old man that respected modern medicine and mother earth. He passed many years ago but if he was still around I'd surely be asking him these days about Manuka Honey and other natural salves used to treat wounds. Please let us know how it goes for you. I imagine it doesn't burn or sting but I am concerned about the allergy part because I do have an allergy to bees. Good luck with the new fistula and heal as best as you can. Picture yourself healing and then go for it. Take care! :cuddle;
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I used manuka honey for a wound several years ago. Turns out I was allergic to the honey so had to stop.
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Thanx my friends for all your well wishes and warnings. The wound looks a bit better and hurts a bit less too, so I will continue with both. I alternate the honey with silver dressings.
After my latest appointment with the transplant/vascular/Super Surgeon I left slightly confused. Apparently my very swollen old’e fistula arm cannot be closed off until the central stenosis has been ‘resolved’.
In’98 when it was first noticed there was no possibility to operate on it without causing another stenosis by the scarring of that operation. The then vasc.surgen agreed that that would be a pointless exercise. So I forgot about it, and so did everybody else. But Supersurgeon says that it’s this very Central Stenosis that’s causing the swelling in the old’e fistula arm, and will cause problems in the new fistula at some point.
So he has spoken with some intervention radiologist in London who will have a look at my next CT scans from my whole upper body as he’s “very interested” in opening that stenosis with intervention radiology.
So I feel: fad up with all the procedures still coming up, grateful that SuperSurgeon discussed ‘my’ case with ‘other Learned Ones’ . And incredibly tired.
And on the other bright side I can needle myself again as I lost 15 kilo’s (with the lactose/milk intolerans s...t) so my arm is less swollen so I can bent it enough to stick the needles in my new fistula. It does mean that I’m now officially underweight. I had to buy new bra’s and knickers which would normally make me happy, but operations or procedures and being underweight is not a good combo.
Thanx for reading, love y’all ;D
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Cassandra, you are such a warrior (though I don't like that word) and have strength that put so many to shame. Sending all the best wishes I can muster for the future! :flower;
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I'm sorry things are so hard right now. I hope you have clear sailing soon.
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I hope they can look at your CT scans and let you know the game plan soon. It's the waiting and fear of the unknown that can sometimes cause us the most anxiety. Glad you are able to needle yourself again. You can look at that as success and one that you can now control. Every little bit helps! Believe me! I also think the manuko honey and silver dressings are a good idea (again, think self-empowerment). Any little strength and success we have along the way makes us stronger and aids in recovery. Of course, you already know this. I just want to cheer you along and say "keep up the good work, girl!"
:cheer:
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Hi cassandra, just wanted to say hello!! ... take care thanks ---
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So NOT a good reason for some retail therapy, cass! I'm glad you've been able to find a few silver linings, though.
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Thanx for the well wishes dear friend
:cheer: :cuddle;
Love y’all, Cas
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Well what a long 6 months ago with an up-date. In that time I had some plasties on the new fistula, and SuperSurgeon ‘found’ a radiologist from London who was prepared to try a ‘semi closure on my olde fistula to reduce the hypertension (which caused the enormous swelling) It worked. He used some ‘plugs’ to reduce the flow from the fistula. He placed them in and around the anastemosis (connection between the vein and artery. It went well.
After 2 months my arm was nearly normal, that olde fistula still works, but feels like a ‘normal’ fistula. The wound has healed completely!!! It’s still black though, but I can use it nearly as a normal arm. Still using the new fistula (which still lives on a planet of its own (as in: most days I can get the needles in, but no 2 days can I stick the venous needle in the same direction, or debt or within an hour) nothing to do with how I hold my arm, or with or without a tourniquet) just different each time.
But I’m so happy, so glad I can use my arm again, wear clothes in my size in stead of 3 sizes larger to fit my arm in. Glad I kept all my ‘redundant’ clothes too. Maybe next week I’ll give embroidery a go, maybe knitting some months later.
:cheer:
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So very glad to hear this, Cassandra! Always a good day when someone has won a battle but especially good when it is you. You hung in there and now it's better for you. We can all use the positive inspiration you share with us, thank you! I wish you continued "wins" for the new year!
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how about switching from fistula to perma cath?
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Oh man, what a story! SuperSurgeon came through for you again by finding SuperRadiologist!
I can't imagine having to wear clothes so many sizes bigger just because of your arm. That must have been incredibly annoying.
I'm very happy that things are approaching "normal" for you. You deserve a boring life for a while!
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Thanx my friends :cuddle;
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Oh man, what a story! SuperSurgeon came through for you again by finding SuperRadiologist!
I can't imagine having to wear clothes so many sizes bigger just because of your arm. That must have been incredibly annoying.
I'm very happy that things are approaching "normal" for you. You deserve a boring life for a while!
That's what I tell people....a boring life would be good. Real good. Just some peace and quiet. They don't get it.
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I had sepsis then.
A nasty illness that I've seen mentioned only once or twice on this site.
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PrimeTimer, boredom is underrated! LOL!
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I had sepsis then.
A nasty illness that I've seen mentioned only once or twice on this site.
Both of my parents died of sepsis. It was truly dreadful, horrible. My father died quickly, but my mother hung on for two terrifying weeks.
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But I’m so happy, so glad I can use my arm again, wear clothes in my size in stead of 3 sizes larger to fit my arm in. Glad I kept all my ‘redundant’ clothes too. Maybe next week I’ll give embroidery a go, maybe knitting some months later.
:cheer:
I'll be very interested to hear when you get back to these activities. When your arm was is such bad shape, could you not embroider simply because of the swelling, or did it just hurt?
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But I’m so happy, so glad I can use my arm again, wear clothes in my size in stead of 3 sizes larger to fit my arm in. Glad I kept all my ‘redundant’ clothes too. Maybe next week I’ll give embroidery a go, maybe knitting some months later.
:cheer:
I'll be very interested to hear when you get back to these activities. When your arm was is such bad shape, could you not embroider simply because of the swelling, or did it just hurt?
My arm was so swollen that I couldn’t bend it, and the open wound in the nape just made bending that arm impossible. Of course I’ll keep you informed :angel;
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Glad things are on the upswing for you Cassandra. :flower; :flower; :flower;
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My arm was so swollen that I couldn’t bend it, and the open wound in the nape just made bending that arm impossible. Of course I’ll keep you informed :angel;
That sounds really unbelievable. It must have made everyday chores almost impossible.
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Wow, just wow, cass! What a journey, but I like that two super docs applied their super skills. All the best and keep on keeping on!