Appointments with the neph

[woodsman]

If you've never had surgery before, it can all feel really overwhelming and scary.  The anticipation of it is the worst, it really is.  I was an absolute basket case beforehand, but afterwards, I felt such incredible relief on many levels, and I think you will, too.

Those two weeks of limited activity will fly by.  You'll be back to hunting in no time.

Where will your fistula be?  That's great that your surgeon doesn't anticipate any problems.  Just get it done, let it heal and get on with life!

Fistula will be in left forearm and yeah what can i do i am trying to accept this whole thing but after all these years it seems like i just hit a dam wall and bang here i am....

[MooseMom]

Yeah, I don't care how many years you've had to "prepare" for this eventuality...you're never really prepared.  It's still a shock.  Still a shock.

[Jean]

I keep telling myself it will be all right, and I have seen the inside of a unit. What scares me, is will I be sick on D day? Will I feel all tired and washed out? Will I have to use the bathroom, and not make it in time? Will I get so hungry I cant stand it, or will I be so sick that all I will do is. ( well, you know). Having needles stuck in your arm, cant be fun, but I think I can stand it, but three times a week? I just dont know.

[Stoday]

Will I have to use the bathroom, and not make it in time?

         if only...

I used to worry about that before I started HD. I can assure you, no one has a problem!

[MooseMom]

Jean, I know EXACTLY what you mean because I've thought all of those same things.  You already know about the machines and the needles, but it's the little details that can be worrisome.  I get really REALLY cranky if I get hungry...will they let me eat?  Will I get sick and pass out or throw up?  Ugh...

[ChickenLittle56]

MM and Jean, I know what you mean by the unknown like will I be able to take the pain of the needle sticks 6 times a week but I did it and I am afraid of needles, They started me with the smallest needle, size 17 needle, and over many months worked my way up to the largest needle, size 15, there maybe smaller needles at your clinic. I'm pretty sure you read other posts that say your site numbs up over time and that is true. I am not going to say that it stops being pain free  because there are times when I have to grin and bear it, such as when starting a new area. If they get to close to a nerve I would tell them to stop immediately. The only thing is that I can't stand looking at the PCT putting in the needles. There are also numbing cremes that can be applied before your treatment. Ask questions before you start to see if you have an experienced PCT if not then request one who is. If they say she bot not available at the moment then tell her you'll wait until she is. Not all PCTs are created equal. 

[woodsman]

So many things to think about. My mind is always in 10 different places lately and all of them not good. I am getting little sleep thinking about this fistula and hoping it works and have no problems with it. I keep seeing them needles being poked into my arm and i  must digrest........................................

[MooseMom]

Yes, there ARE a lot of things to think about.  But I'd bet that when you go hunting, there's a lot to think about.  Or when you are starting a new building project, there's a lot to think about.  Dialysis just is not as much fun, and it's not something that you are choosing to do, so it is easy to resent having all of this stuff to think about.  Who wants to have to mentally figure grams of phosphorus or potassium whenever they are about to sit down to a meal?

[woodsman]

Thanks MM your are a real sprit lifter and i always look forward to reading your posts.

[rfranzi]

I hate doctors. I always have. I firmly have always believed it is a crapshoot whether they make you more sick or help. Unfortunately I need them now, and my opinion hasn't gotten any better. I am on my third nephrologist is essentially three weeks. I was seeing the first one for a few months, what it took to get to get the diagnosis. I couldn't get a readable printout of my labs, for one. There were other things wrong, but long story short, I went to someone else once I found out how serious this was. The second neph acted funny about the fact that I was getting a second opinion and said she trained with my first neph, and that he was a very smart guy. I sensed an old boy network that was not in my favor. They seemed paranoid about getting sued. But I got more information from her in one meeting than in months with the other guy. She also gave me a name at the University of Washington and made me aware of the NW Kidney Center. I went to a nutrition class at the kidney center since and am following up with a dietician.  I am just pissed that I could have done that 2 months earlier. I had a second appointment with her, and I am going to skip the details because I don't feel like typing that much, but it was awful. I cried for two days. I followed up at the UW and I got more info in a more understandable way. Also they are toying with the idea of the experimental treatment rituximab, and if I were to opt for this, they are the only ones who can do it. So I'm sticking with them for now, but this one strongly defended the other two doctors, stating that they trained there and he knew them. I didn't really care about that, and I explained that I wasn't doing this for fun, that I was just trying to get information and the best treatment I could find. Since they are always in such a rush I would have rather spent the time getting my questions answered than defending or not defending the other doctors. Ultimately the one thing they all had in common was to tell me at some point that my disease is rare and they just don't know. They don't know what causes it, how to treat it, but it is progressive. (It is fibrillary glomeronephritis) So, it stands to reason,  if someone told them that they had a rare progressive disease, wouldn't they too try to find the best infromation they could get? I want to swear, I want to scream, I do cry, and in the end I just do what is in front of me and say screw them, I have to do what is best for me. Some of the information I get is conflicting, and processing it all has been difficult at best. I do not simply trust any doctor, and have had them run out of the office bruskly while I was in the middle of a question. They are all rushed, cold and impersonal. Our system just sucks, the doctors do not have the time to adequately treat a single patient. I have to extract information from them like I am pulling teeth. And I have to advocate hard for myself. It really shouldn't be this hard just to get reasonable care.

[MooseMom]

rfranzi, we all know that we have to be our own best advocates, but sometimes you just get tired and want someone else to take the load off of your shoulders for just a little while.   When you feel that you can't trust your doctors, the burden is even heavier.

Here on IHD, you will find many people suffering from CKD, and once you have been here awhile, you'll suddenly discover the fact that all of us present in a different way.  How one person is affected by fsgs may be entirely different from how I am affected.  You are at the very early stages of your "renal journey", and I think it is true that your doctors really don't know for certain what exactly is in store for you.  Sometimes we just cannot get the answers we so desperately want.

Many years ago when my son was young, I suspected he might be autistic.  He was later diagnosed as such.  I talked to so many doctors and specialists.  I attended conferences.  I called universities.  I had files filled with information on autism.  I soon discovered that fully 90% of the information I uncovered was completely irrelevant to my son's particular case.  As you do your research and advocate for yourself, please try to keep in mind that no one has researched YOUR body or YOUR kidneys.  Gradually sift through all of this stuff and learn from what is relevant.

I know you distrust doctors, but these people are going to be a part of your life for the rest of it unless they find a cure.  No one knows what causes fsgs or really how to treat it, but they know it is incurable and progressive, just like your disease.  I'd rather have a neph who tells me he just doesn't know than to have one that just makes up crap so that they sound more knowledgable than they are.  Actually, my neph told me 6 years ago that I'd be on dialysis very soon...six years ago.  I trust my neph, but he doesn't have a crystal ball.  Your doctors don't, either.

I'm curious...what do you believe a doctor needs to do before you will trust him/her?  What can they do to earn your trust?  Needing to do what is best for you surely includes establishing a rapport with a neph who you will gradually be able to trust.  This is a scary time, I know, but I hate to see you entering into the fray with your armour at the ready to defend against people who may truly be trying to help.  I don't like the idea of you possibly sabotaging a relationship with your medical team before they have a chance to prove their worth.  It is hard to be nice and cooperative when you are scared and frustrated.

Doctors are always rushed for time, and it makes you feel diminished.  I really hope that your new docs at U of W will be able to earn your trust and that they will give you all the info you need regarding the decision to treat with rituximab.  I'm sorry this has all been such a difficult experience for you.  Nothing about this is easy.

[woodsman]

I have to go back on the 2nd and wanted to ask some questions when i get there. They have to do the Doppler thing on my arm, What should i be asking this surgeon, things like how much scaring? what will it look like and how much pain will i be in and for how long, What else should i be asking??.
Thanks Jim

[MooseMom]

The doppler thing is actually very cool.  I would ask the following:

1.  What signs should I be looking for that tell me there may be a problem?

2.  Are there any activities I should stop doing (my surgeon told me to literally "ignore it", and my neph said the same.  Both wanted me to use my arm as normally I do to keep the blood flow going.)

3.  Ask about numbness.  You may very well experience numbness around the incision, so ask how long you can expect it to feel numb.  Chances are he'll tell you six months, but in my experience, it didn't take nearly that long for regular sensation to return.

4.  Sure, you can ask about scarring, and you might ask him to draw on your arm exactly where the incision will be and where the fistula wil actually be located.  My surgeon drew all over my upper arm, and I couldn't make heads or tails out of his doodlings, but I wasn't concentrating very well on that day.  Plus, the surgeon was very nice but had a very think Korean accent, and I was too mentally tired to really take it all in.

If I think of any more questions, I'll let you know.  Please come back on the second, if convenient, and tell us all about what you find out.

Everyone experiences pain differently, but I ended up just taking advil because the prescription pain killer I got made me feel like I was on a small boat.  I'd rather feel discomfort than feel seasick, thank you very much.

Hope this helps.

[rfranzi]

I really appreciate your feedback, and to answer your question: I was just venting here and being brutally honest about how I feel, but having said that, I think my expecations were in line and I trust my instincts with regard to how I am being treated. Since there are different doctors to address, the first one: I would have expected a readable copy of my lab results, which I couldn't get, and I would have expected a referral to the NW Kidney Organization or some support/dietary information, which I didn't get. Not crazy expectations....The second one was a minimal amount of adequate time, an answer to my questions even if it is "I don't know" - I didn't go into it in my last post, but when I asked about alternatives to medications and the relation to the quick drop in my gfr in a short period of time, she responded "well, you have a terrible disease", entirely avoiding the question and being cruel in the process, especially in her tone, which was like I was taking up too much of her time. You're right, I have to see these people for a long time now, and I need to feel that I am being treated with compassion and care. The third doctor was better with all of these things and I intend to work with him and develop a relationship. My only complaint is that he was defensive about the other two. But it is not a perfect world, he answered my questions and said he didn't know when it applied. I just knew I needed to get all the information I could both to understand my disease and to try to take the best care of myself as we navigate through this (i.e., diet, medication, etc.) So I will be working with the new nephr, to get to know each other over time and to treat this in the best way possible. I have just always been frustrated with how lacking many doctors are in the quality of care and what it takes to find a good one - seems there is little accountability for it either. If you buy a pair of shoes at the store and they don't fit, you can return them. If you see and doctor and don't get what you need, you still have to pay and then go and do it all over again at your own expense. Sometimes you have to do it a few times to get it right. It is worse dealing with them, to me, than hearing about the disease in the first place. Let's face it, our medical systems leaves some things to be desired. The news is relatively new, and it is the one thing I never wanted to be in, but here I am, so I am actually proud of myself for persevering through it and finding the best care that I could. I feel and I hope that I have the best care I can get, can get my questions answered and will be treated with some level of respect in the process. Just took a while to get there.

rfranzi, we all know that we have to be our own best advocates, but sometimes you just get tired and want someone else to take the load off of your shoulders for just a little while.   When you feel that you can't trust your doctors, the burden is even heavier.

Here on IHD, you will find many people suffering from CKD, and once you have been here awhile, you'll suddenly discover the fact that all of us present in a different way.  How one person is affected by fsgs may be entirely different from how I am affected.  You are at the very early stages of your "renal journey", and I think it is true that your doctors really don't know for certain what exactly is in store for you.  Sometimes we just cannot get the answers we so desperately want.

Many years ago when my son was young, I suspected he might be autistic.  He was later diagnosed as such.  I talked to so many doctors and specialists.  I attended conferences.  I called universities.  I had files filled with information on autism.  I soon discovered that fully 90% of the information I uncovered was completely irrelevant to my son's particular case.  As you do your research and advocate for yourself, please try to keep in mind that no one has researched YOUR body or YOUR kidneys.  Gradually sift through all of this stuff and learn from what is relevant.

I know you distrust doctors, but these people are going to be a part of your life for the rest of it unless they find a cure.  No one knows what causes fsgs or really how to treat it, but they know it is incurable and progressive, just like your disease.  I'd rather have a neph who tells me he just doesn't know than to have one that just makes up crap so that they sound more knowledgable than they are.  Actually, my neph told me 6 years ago that I'd be on dialysis very soon...six years ago.  I trust my neph, but he doesn't have a crystal ball.  Your doctors don't, either.

I'm curious...what do you believe a doctor needs to do before you will trust him/her?  What can they do to earn your trust?  Needing to do what is best for you surely includes establishing a rapport with a neph who you will gradually be able to trust.  This is a scary time, I know, but I hate to see you entering into the fray with your armour at the ready to defend against people who may truly be trying to help.  I don't like the idea of you possibly sabotaging a relationship with your medical team before they have a chance to prove their worth.  It is hard to be nice and cooperative when you are scared and frustrated.

Doctors are always rushed for time, and it makes you feel diminished.  I really hope that your new docs at U of W will be able to earn your trust and that they will give you all the info you need regarding the decision to treat with rituximab.  I'm sorry this has all been such a difficult experience for you.  Nothing about this is easy.

[MooseMom]

I agree with everything you've said, and you are right...it is all a process.  Finding and putting together a medical team you trust should not just be left to chance, but unfortunately for those of us whose insurance tells us who we are allowed to see, that's often how it is done.  I'm glad you have not had to be trapped in that particular situation and have found people who can give you good care.  Good for you for perservering; that is not easy to do when you've been thrust in a scary situation not of your choice.  I will be very eager to hear how you get on, so do please post about your various appointments.  Now that you have described some of the behaviour/attitudes you've been subjected to, I can certainly understand why doctors are not your favourite people in the world.

You make a very good point; having a terrible chronic disease is hard enough without having to deal with the health care system, the bureaucracy and the idiocy of so many elements in the system. 

This is the place to come when you need to vent and to be brutally honest!  I'm glad you did just that.

[woodsman]

Went in today for the arm mapping and it went well. The mapper guy was the silent type and did not ANSWER MUCH go figure. I am having a ton of anxiety here like never before and it is really beggining to affect my daily life.
Can't wait until the surgery is over.  I had to use spell check 4xs just to type this............... 

[woodsman]

Went in for pre op at the hospital and they showed me somewhat what they will be doing. EKG good, blood draw was not to good person was digging around looking for a vein, ouch,,,, BP good. it's a go for tuesday 1:30pm........yeah me.

[MooseMom]

My cardiovascular surgeon did my mapping; he's Korean, and I could hardly understand a word he said.  He's been in this country for yonks but still speaks in heavily accented English; despite me inquiring several times just exactly what he was going to be doing, I gave up and just figured it didn't really matter as long as the thing worked.  He ended up drawing all over my arm to show me which he was going to connect to what, but that didn't help, either.

On the day of my surgery, the anesthesiologist told me that the surgeon wanted me to have just a shoulder block.  I was in such a state that I told him that this was the worst day of my life and that I didn't want to remember a thing about it, so he'd damn well better just put me out.  He left and consulted with the surgeon, I guess, because he came back and agreed to a deeper anesthesia.  Of course, that stuff ended up making me sick (I don't do anesthesia, really); I was still throwing up as they wheeled me out of the hospital!  Anyway, I paid the price for being such a weenie, but I don't care.

Look, I understand EXACTLY the anxiety that you feel.  I would suggest seriously considering asking your doc for a prescription for Xanax to combat the anxiety.  It's one thing to have surgery to FIX something, but having surgery to get yourself ready for something like dialysis is, in my mind, a whole 'nuther thing.  I had to have a hysterectomy 2 years ago, and that's a pretty rough thing for a woman, but seriously, I didn't have a single qualm about that, not like this fistula surgery.  Please consider it, OK?  I don't think suffering like this has any great cosmic lesson...it's just suffering.  If you can do something to ease your anxiety, even if it is a little pill you'll take on a temporary basis, please think about it.

I will never say to anyone that everything is going to be OK because sometimes things don't turn out that way, but if anyone thought this surgery might go horribly wrong, they wouldn't perform it.  It sounds like underneath it all, you are a healthy man, and as such, I really do believe that you will suffer a lot more between now and the 9th than you will once your surgery is over.  In the grand scheme of things, creating an A/V fistula is small ball.  But that fact doesn't really relieve you of the anxiety, does it!  I'll be very relieved on your behalf once it's all done and dusted!!

[woodsman]

Thanks for the advise MM but i am going to try and face this headon. I am not going to let it bother me this weekend at all, i will hunt and have some fun for a change. Thanks for all your support. if it gets to be enough i will not hesitate to ask for some happy pills... again thanks
Jim

[MooseMom]

Thanks for the advise MM but i am going to try and face this headon. I am not going to let it bother me this weekend at all, i will hunt and have some fun for a change. Thanks for all your support. if it gets to be enough i will not hesitate to ask for some happy pills... again thanks
Jim

Great!  I hope you have a fabulous weekend.  You deserve some fun!

[woodsman]

Thanks everyone for the support. Wish me luck as tuesday i have surgery at 1:30pm,, I am let's say no happy about it but i have accepted it.

[MooseMom]

I came online for the express purpose of wishing you luck, woodsman; I'll be thinking of you tomorrow!  When you feel like it, please come and post about how it went.  We wish you the best of luck.

[woodsman]

Thanks MM i was hoping you would stop by and wish me luck. You have been a great shoulder for me to lean on and i can't tell you how much i appreciate it. This place has been awesome and i have learned so much from everyone, MooseMom you ar5e very special and i thank you.   

[paris]

How are things going, Woodsman?  I keep reading your posts. I am a little behind on posting right now, but I keep checking here to see how you are.

[woodsman]

Well i am back!!... I completed the fistulla surgery and all went well. I was off work form the 9th -the 29th. Healing well staples are out  but i don't see any signs of a fistula forming yet, how long does it take? to see something visible or maybe it won't be visible??. I sure can feel it like a vibration/thumping that is very pronounced in my wrist to elbow area. Scare still tender but not to bad.  The wrose part was the nurse i had kept missing the vein with the needle for the IV before surgery. They poked and prodded 4xs to get it,,,, ouch