Pre-D rambling

[MooseMom]

Well, it WAS funny....

By the way, it would be a good idea to find out just how experienced your surgeon is.  My neph just automatically referred me to this guy, but I did ask my neph about the surgeon's amount of experience.  He was the one who warned me about the surgeon's accent.  My mom had to go on dialysis after an aortic aneurysm repair destroyed her kidney function, and the neph she was referred to had a part interest in a vascular clinic, so of course he just referred her to that clinic.  They did a terrible job creating her fistula, so much so that she had to use her cath for 18 months.  It was a terrible ordeal for her, and finally one of the D nurses took pity on her and told her to find another surgeon and not to go back to that clinic (apparently it was generally known amongst the staff at the D clinic that the vascular clinic wasn't very good).  So my mom ended up going down to the Texas Medical Center to one of their top-notch cardiovascular surgeons, and he created a truly fab fistula for her.

Anyway, my neph trusted him, and when I actually met with him the first time, I asked him about his experience in creating AV fistulas.  I was able to understand that he has been doing about 20 a month for years, so I figured that was pretty good.

I had read posts from IHD members who, after initial surgery, had to have another procedure to "lift" the vessels closer to the surface of the skin for easier use.  After the surgery but before I woke up, the surgeon told my husband that he had lifted the vessels and had stitched them to the underside of my skin (ewwww!).  My husband didn't understand the significance of this, but I did, and boy, was I grateful AND impressed.  So, when you all go in for your vein mapping, it might be an idea to ask about whether or not your vessels may have to be "lifted."

[Willis]

As for the vein mapping itself, I found it a very easy procedure with no pain at all (except a little stress on my shoulders where they stretched my arms out like you're on a cross). But at least in my case the radiology team was kind and professional. Thumbs up to Carolinas Medical Center! 

Two things I would make a point of from my experience.

First, the contrast dye used for most patients is apparently toxic to the kidneys. I'm allergic to the contrast dye so that forced a conversation about the alternatives. I did not know that the dye could harm your kidneys. Something to discuss with the radiologist BEFORE they start. In my case I think they used CO2 gas for the vein mapping.

Second, the room where they do the procedure is about 45 deg F. They gave me heated blankets to put on, but that didn't help much where I made contact with the cold metal tables! Where something warm if you can! If they force you to wear a hospital gown, have them put a blanket underneath you before they start. It took about 15 minutes and I was shivering by the time they were done. (The staff all wore thick sweatshirts.)

 

[Dannyboy]

RE: Vascular Surgeon's experience.   Yeah, I hear you moosemom.   I already checked him out, said to be excellent, with "awards" for his work doing fistulae.   This is yet another example of why IHD is so good.....I knew to check up on the 'doc from reading others' experiences/outcomes.    So I'm hoping I'll have an excellent job done.   Most/all of us on IHD are very pro-active it seems to me, we recognize that knowledge is essential, that it is good to sort of keep an eye out/look over the shoulder of what various med types are proposing or doing.   Like you, I'm not afraid to speak up and speak my mind.

@Willis.   Sheesh....ice cold room:  Thanks for the heads up.   They're sending me an information packet, so maybe it will have comments about that sort of thing.    I thought they just used ultra-sound to the mapping.....I will brush up on the dye issue, i recall a recent thread on this.     How long between the mapping visit and the actual surgery??

----Dan

[MooseMom]

My vein mapping was done in the surgeon's office with just a little portable ultrasound machine (and the surgeon's purple magic marker!).  Willis, why was your mapping so complicated?  Do you have other vascular issues?  I didn't have any dye or gas or anything like that.

[Willis]

My vein mapping was done in the surgeon's office with just a little portable ultrasound machine (and the surgeon's purple magic marker!).  Willis, why was your mapping so complicated?  Do you have other vascular issues?  I didn't have any dye or gas or anything like that.

Well, that's a good question! I don't know. I have no other issues and had passed a stress test just one week before. I went to the vascular surgeon who my neph told me later was in his opinion the 2nd best of about 50 surgeons in the region. I believe he was correct because he did both the AV surgery and the PD cath with excellent results. I don't remember getting the option to do an ultrasound...probably just the surgeon's preference. The vein mapping wasn't even a minor procedure really. After getting a number of preparatory tests, I walked in, got on the table for about 15 minutes, and walked out. Even simpler than ultrasounds I've had with no gooey mess. (Certainly a lot more expensive though!)

DannyBoy: I had my surgery about two weeks after the vein mapping. In my case I wanted the fistula on my left upper arm and that's were I got it.

 

[MooseMom]

Hmmm, willis, you're probably right; it may just be a matter of how the surgeon prefers to do the mapping.

As for how long it takes to get from mapping to surgery, usually that's just a matter of the availability of the surgeon and the OR.  All you really need is enough time to prepare for anesthesia (like fasting or whatever your hospital requires).

[billmoria]

rambling while on dialysis: I had a bacterial blood infection. I was in hospital for 15 days on a very powerful antibiotic. When I got home had 5 more days of antibiotic drip from district nurse. Had to be re-canulated - always a problem for me - and it did not work. Had to go in and have another port put in. Good news: the infection is gone. However, I am very weak 2 weeks later. They drew blood last night - I am on MWF in clinic. My white cells have recovered to normal. However, my red cells - which carry oxygen and thus energy - are still low. I may have to have blood transfusion which they will do in dialysis. It all depends on the results. I had to beg off making dinner for my overworked baby. Dave, like always, took it like the great person he is. I am so lucky to have him     

[AguynamedKim]

So sorry to hear about the blood infection, Billmoria - but so happy to hear you cleared it. That is some very serious business. I hope your RBC count gets back up soon so you get to feeling better.  All the best.

[MooseMom]

billmoria, man, you've had a rough time!  It sounds like you are on the road to recovery, though, but take it easy.

What is your favorite meal to prepare for Dave?  When you don't feel up to cooking, does he usually cook, or do you get a take-away?

[billmoria]

Dave cooks sometimes but he is disabled and standing for a long time is difficult. I try to make a roast dinner on Sundays: lamb, beef or chicken with roast potatoes (not for me). and , of course Yorkshire pudding, and veggies. I have not cooked a real meal in a month. We order takeaway but try to limit that.

[malaka]

Vein mapping was done in surgeon's office last Friday by tech who told me all her medical problems. Other than that the gel was icy cold, not really even aware it was being done.  She did both arms, just in case, but I made it known that I was right handed.  Because my veins are "patent" (i.e. visible on the u/s device) it took maybe 1/2 hour from waling into the room to walking out.  Tech told me with older, frailer people, sometimes its harder to find the veins, so they set aside 1/5 hours for the procedure.

Question to those who have been there:  how long will I be "disabled" from the fistula creation?  I thought of this while I was installing a window a/c unit this weekend, and mowing the lawn, etc.  It may be a great excuse to be lazy, but I do have to plan for fall chores now that the spring/summer ones are nearly done. 

[Willis]

Question to those who have been there:  how long will I be "disabled" from the fistula creation?  I thought of this while I was installing a window a/c unit this weekend, and mowing the lawn, etc.  It may be a great excuse to be lazy, but I do have to plan for fall chores now that the spring/summer ones are nearly done.

Shhhh! Just let everyone keep thinking you can't lift anything heavy forever...it will get you out of helping your friends move or other hardwork you wouldn't want to do even if 100% healthy... 

Otherwise, just do what you think you can handle without overdoing it (that's after 3-4 months healing of course--be careful for awhile).

 

[MooseMom]

I've never felt "disabled" because of my fistula, but as with any post surgery wound, you have to be careful while the wound heals.  The main thing to think about is to protect the "junction" point where the artery and the vein are attached.  On the other hand, you should be encouraged to use your fistula arm as normally as possible because that strengthens the vein walls, just as would happen with any exercise.  I think basically that if you've never done heavy exercise with that arm, after fistula surgery is not the time to start lifting heavy weights, but if you have been used to lifting heavier weights, you should be able to continue to do so after a while.  My surgeon gave me the speech about not having bp or iv punctures in that arm, but he and my neph told me that other than those things, "Ignore it, " and that's a direct quote.

I think you should ask your surgeon specifically.  We can give you our experiences, but they may be irrelevant to you.

[malaka]

I know I'm supposed to be careful, but I was hoping it would be more like dental work that's o.k. to use in a few days.  I guess not. Looks like a "easy" rest of the summer for me, then.  I still need to find one of those NBA type arm sleeves which I suspect are more used there to cover up tats than for therapeutic purposes!

Tomorrow, as Scarlett once famously said, is another day.  For me, its a repeat second opinion day at University of  Michigan nephro clinic.  Nephro there wants a second biopsy to see if I'm just inflammed and therefore treatable or scarred and not treatable except by dialysis or transplant.  I'll go along with it.  What do I have to lose?

[malaka]

Doc called and she said:  "There is no contraindication to stopping your anti coagulant therapy, so we will proceed with the biopsy."   Why do they talk like that?  Wouldn't it be easier to say:  "you can stop taking your coumadin X days before the biopsy."?    Oh well, I've been under treatment long enough to begin to understand medicalspeak where negative is positive and positive is negative, etc...

[MooseMom]

I'd prefer to believe that a doc who spoke to me that way understood that I had a working brain and a good body of knowledge; I'd take it as a compliment, but I do get your point.

[malaka]

Fistula surgery put off to July 29 as my motorcycle, me, and a deer had a disagreement about the right of way on a rural county highway last Sunday.  Scraped the back of my left hand and required stictches, so vascular surgeon said he'd prefer not to take blood supply away from my left hand for the time being.  makes sense to me.  Kidney bopsy still "on" for Tuesday.  Only to see if full of scar tissue (not treatable) or inflammation (potentially treatable). 

Sorry I scared your distant relaative, MooseMom.  A deer is distant relative, right?

[MooseMom]

Very, very distant...

I sure hope you were the winner of that disagreement!

I'll be very interested to hear the results of your biopsy.  Be sure to let us know, and also if you're able, give us some idea of what the next step might be.

[jbeany]

Deer + Motorcycle =Ouch!

 

Doc called and she said:  "There is no contraindication to stopping your anti coagulant therapy, so we will proceed with the biopsy."   Why do they talk like that?  Wouldn't it be easier to say:  "you can stop taking your coumadin X days before the biopsy."?    Oh well, I've been under treatment long enough to begin to understand medicalspeak where negative is positive and positive is negative, etc...

Well, yu can always ask them to translate it into English - that usually stalls them for a minute!