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Visit with Urologist today, about kidneys (UPDATED 4/6)

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Posted 4/6/2014 12:16 AM (GMT 0)
squirm - I intend to give a full account of my visit treatment next week when I see the doctor. I will not, nor have ever tolerated that kind of treatment.

Pat - thanks. She was actually named after another old song called "Peggy O'Neill", which happens also to be her maiden name. "Peg of my heart" was often sang to her by her mother when she was alive.

We did celebrate today, instead of tomorrow (to beat the bad weather). Took her fabric shopping at two major outlets (how many husbands could stand that for hours on end without complaining, lol). The one place had 1 million bolts of fabric, she was in sensory overload.

We ate at a seafood place (I think it may be a chain?) called "Joe's Crab Shack". It was great. Had crab cakes, crab stuffed shrimp, and some kind of fish. She had Lobster, scallops, shrimp, and something else. She blabbed about our 40th, and they made an embarrassing public display of us, called the "Love Hoop", we were under a big hula hoop, and had to kiss without breaking while the staff slowly counted down from 10. I am sure I was beet red, it was a miracle that I cooperated.

Then we looked at new RV's, considering trading in our old one on a new one.

Had a decent day, but all the walking and standing caught up to me, and I was in major pain zone long before we got home. Just got up from a two hour nap.

David
Posted 4/6/2014 4:49 AM (GMT 0)
Happy anniversary !!

Re:your dr appointment.. agree w/inconsiderate treatment & rude nurse. Dr may not know about rudeness -may not even be aware - really aware - of how long & where you were forced to sit.. pure agony those darn metal chairs. !!

Spent 3 hr+ in dr office once & was fit to be tied. Nurse case manager just happened to be with me & observed pain elevate while I melted - literally- unable to sit or stand up straight. Believe it turned her into a believer of chronic pain.. at least MINE

As others & yourself have written
Your unexplained weight loss is VERY troubling..
??perhaps send a very brief note or email to every single dr that you see
" since Such & such date I have lost a total of x lb. .. x in Jan, x in Feb & x in March. I am very concerned. Please advise how this should be tested/ addressed ASAP" ??

Understand your motivation in mowing yard & other stuff... sometimes just ' gotta do what we gotta do'

Missing upcoming wedding is so disappointing.. I am very sorry.

Also understand /empathize the time our bodies demand to recuperate.. last episode for me -took almost 2 weeks to recup after FCE which ironically 'proved' I am able to work.. NOT..

After reading your description I believe perhaps I may have CFS.. I too hit a wall almost every single day when I find it hard to even move, yet cannot sleep. Just a numb exhaustion. I use the energy I have for family interaction &/or occasional errand & am drained. Is that the way you feel too?

Hoping sunshine & springtime will revive some interest in life.

As always
Prayers & blessings
Posted 4/6/2014 5:08 AM (GMT 0)
Hello, Diane. Nice to hear from you again.

CFS, trust me, if one really has it, you will know, it can't be mistaken for anything else, and sleep and rest most often don't alleviate the feelings you have. That can be the frustrating part of it. I plan most days on my timing of my personal "wall". It's that predictable. And if I push past the wall, I always pay for it hard later, like I did today. Just didn't want to ruin our special day together, so I sucked it in, and kept going and pushing, never said a word out loud about how I was feeling. But when I got home, I was about 8 on the pain scale, 10+ on the fatigue scale, and remember little else after I hit the bed.

With the CFS, I have to be careful if I am out driving past my "time", because it can hit me hard while driving, to the point where I can't literally keep my eyes open. So much planning around it, which makes things hard to accomplish sometimes.

Still hoping by some miracle that I can make my own son's wedding, but when they changed it from SC to CA, he didn't think of the possibility that I wouldn't physically be able to make it. It would take a miracle at this point. Wedding still 6 months away, but its not like I am getting any better or likely to get better, as I keep slipping further and further down all the time. But one can hope.

Glad to hear from you, and thanks for checking in.

D.
Posted 4/6/2014 11:27 AM (GMT 0)
David,

Sorry to hear about your doctor's appointment!! In the past, twice (two different dr), I waited over an hour to even to be taken to an exam room, then waited another 30 plus minutes until he came in! One of those appointments, I just about walked out!!

Hope you get some answers very soon as loosing that much weight isn't normal.

Wishing you and your bride a "Happy 40th wedding anniversary."

This Sept., 26th, we'll be married 44 years.

Dave in Bartlett, TN
Posted 4/6/2014 3:21 PM (GMT 0)
David

Going to research chronic fatigue.. your description is right on.
This fatigud has been the most frustrating part of my post-injury life & is why I kinda understand why family thinks I am lazy

Over 9 yr ago I fell at work..
Was the day that my injuries occured & the also day my body started the numb / buzzy / painful feeling that was dx as fibro.. may have been the day that myofascial started also.

So I do not know which symptom is what condition.
The pains & muscle cramps in my arms, for instance - for years, literally years, I thought those were result of shoulder &/neck injuries until I discussed it w/knowledgeable physical therapist (whose personal health issues are very similar to my own so she KNEW). Real answer is NOT just injury but also fibro & myofascial. I have been thinking it was just fibro:maybe not

Hope it is a wonderful day for you & the misses
Posted 4/6/2014 6:43 PM (GMT 0)
thank you, dave, my friend. Looks like you got a 4 year jump on me on the marriage bit. If I had married my wife any younger than when I did, it wouldn't have been legal, lol.

diane, with multiple similar symptoms, it can be difficult for a doctor or even specialist to determine what is what, and what belongs to what. my neurologist has told me, that there are so many weird neurological disorders that can mimic one another, so neurology is not the easy exact science that some think that it is. it's considered one of the more difficult medical disciplines to follow. takes a patient doctor and a patient, patient, to work through to a diagnosis. that is my current dilemma.

and "fibro" is a difficult diagnosis also. my neurologist, unlike some PCP or family doctors, believes it can be a real diagnosis, one that brings lots of quality of life difficulties. however, as I am sure you know, there are both doctors and people in general that think its a "fake" disease or diagnosis, one that lazy people hoping to get put on disability seek. I think that is unfair, there may be some that would do that, but "fibro" is a very real disabling type of malady to deal with.

taking it easy today. woke up this morning, with intense body chills. couldn't shake them, had a robe on, and two blankets and was still shaking. wife took temperature, expecting to find fever, but it was the opposite, I was 3 full degrees below normal. one possibility of running an "under" fever, she said, was extreme fatigue and being ran down so much. I only got out of bed at 1 pm today, not even two hours later, I already feel completely run down, so headed back for bed soon.

glad we did all our anniversary stuff yesterday, as I would not have been able to enjoy anything. didn't even make church today, first time I have missed to my health since October.

david
Posted 4/6/2014 8:15 PM (GMT 0)
David

Hope you are resting comfortably & strength/ energy returns soonest. Wonderful that you had opportunity to celebrate yesterday !

Your observation re:neurology sounds right to me - my pm dr 'specializes in fibro (many years of research) yet when I ask him if such-&-such is a symptom of it he answers 'no'. The fibro thread on here has shown me that either many of us have other conditions or specialists disagree what the symptoms are for fibro. For almost 3 yr workmans comp has refused to approve an appointment w/neurologist so there is so much I do not know about myself.

Prayers

PS
Just went over to fibro thread & found this - going to go back & check out the link..
"..Given that CFS and FM often overlap, and that 70 percent of FM patients meet the criteria of CFS , I think this information could be very relative to some FM patients, or the ones that also experience overwhelming fatigue or could be said to have many of the symptoms of CFS. But, for the record, this study was done on CFS patients.

So, if you have CFS, or CFS in addition to FM, you could be dealing with an illness with an inflammatory component: Inflammation of the nervous system. .""
Posted 4/6/2014 9:00 PM (GMT 0)
Well said, Diane. For those with true fibro, CFS would be expected to be part of the mix. But you can have CFS in conjunction with a lot of other medical reasons. In my case, its been associated since 2000 because of radiation exposure and extreme radiation damage. Prior to 2000, I had never experienced it before. Can honestly say, its never improved since the 2nd radiation event in 2009, it has only gotten more extreme and longer lasting. On the normal scale of 1-10, on a "good" day, my fatigue starts the day at 5, and goes steadily up the longer I push myself. On the "bad" days, I start at about a "8-9", and it will max out before noon.

That's when I hit the proverbial "wall". Once it hits, the results can almost be dramatic. I can be feeling fine (for me) one second, then, blam, its over with for the day for me, and all I can do is lay down and try to rest. Most times, the rest doesn't come with restful sleep, just laying there in some degree of uncontrolled pain and total exhaustion. Sometimes, I am fortunate, and will pass out in a heavy sleep for an hour or so.

D.
Posted 4/6/2014 10:01 PM (GMT 0)
David:

Not sure if you can do this, but I am 3 minutes by car (8 minutes walking) from my local doctor's office. He is usually prompt, but not always. I always call his office 15 minutes before my appointment. I ask them how he is running. They know me well enough so they give me an honest answer. Many times, it is "leave in 25 minutes" or something like that. Also, I generally take a book or newspaper just in case I have to wait anyway.

Mel

Posted 4/7/2014 12:59 AM (GMT 0)
With my oncologist, its never a problem. He's always prompt and punctual, and most visits, he will come out personally to the waiting area and fetch me. Or if on the rare time he is running late, his nurse will come out and tell me, so that I don't have to spend unreasonable time in a patient room.

With this neurologist, its the only time its happened, and interestingly, his normal male nurse wasn't on duty, I had never seen this nurse before, and she was rude from the moment the waiting room door opened when she came and got me. Sure everyone is entitled to a bad day, but you don't take it out on the patient, in my opinion.
Posted 4/7/2014 11:05 AM (GMT 0)
David, it's distressing to read that you were kept waiting so long without any communication, and had to endure a rude nurse in the process. And yes, everyone is entitled to a "bad" day and while it's reasonable to expect that the nurse wouldn't take it out on patients, it's not always possible. Who knows...perhaps she was dealing with a lot of frustrated patients who were PO'd because the neuro was running so late. Not an excuse, just an explanation of why she might have been so rude.

When do you next see your oncologist? Based on your weight loss and inability to recover from anything strenuous, I hope that it'll be sooner rather than later. Do any of your medications need to be adjusted based on the weight loss? You wrote that you were on BP medication and I wonder if this needs to be adjusted down to accommodate the 30+ pounds that you've lost.

You wrote that you were considering upgrading your RV. Have you been able to use the RV? Is it more comfortable driving the RV than driving your car any distance? Just curious as to how well you're able to endure driving an RV when you experience so much pain after driving your car or sitting in a chair for any length of time. I imagine an RV is quite comfortable.

Hope you're recovering and feeling a bit better.
Posted 4/7/2014 2:55 PM (GMT 0)
It's not a motor home. It's a small size travel trailer. And we usually keep it at the same lakefront RV park about 30 miles from the house. It stays wintered in our yard, as I don't want to pay storage fees during the winter months. When we want to use it during season, I just call the RV park, they pull it to a lot and set it up. So no real serious work for me when we get there.

We never went even once last year, one reason I am reluctant to buy a new one. More the wife's desire, our current one is 15 years old, looks excellent on the inside, but getting shabby on the outside from age and weather.

I see my oncologist next month. If I felt an emergency going on, I could force an earlier visit. Right now, I am trying to get through the neurology part, so I see that guy on Wednesday. Unless he's finally come up with something useful, I am about done with him. Been tested about every possible way. This is why I was hesitant about going the neuro root. Been there, done that, several times before, and they never can seem to put an accurate dx on what goes on. Just seems like guessing to me.

David
Posted 4/7/2014 3:37 PM (GMT 0)
David,

Your pain issues have been in my thoughts for a long time. I do not recall; are you by chance taking a statin to help manage cholesterol? The side effects can be insidious if one has them.

For perspective, I have now made 4 aborted attempts to use statins. Each time the side effects became worse. They grew to include widespread muscle and joint aches that literally took away my strength to do the physical tasks I enjoy when off work. I began to have an idea how chronic pain can wear a person down.

Just a thought that this could be an unrecognized factor making your pain management tougher.

Explorer
Posted 4/7/2014 3:44 PM (GMT 0)
Explorer,

I am fortunate that I have never had any cholesterol problem, so never been on any statin drugs. Good lead though, but not the case for me.

Have heard of others having horrific side effects on cholesterol meds. Thanks for the idea.

david
Posted 4/9/2014 5:12 AM (GMT 0)
David:

I'm so sorry that you had the appointment from the fire pit. What a jerk for making you wait so and the rude nurse should be written up. That's totally unacceptable for a Dr to do that to a patient. The only Dr's that I know that get away with that are the military Dr's I see. Normally, they never make us wait more than 2 to 3 hours. The ER is the exception I've waited 12 + hours to be seen there.

I hate to hear that the pain, fatigue and all is worsening. I can relate to your feelings about missing your sons wedding. Though, I've not missed my daughters wedding, I did miss her high school graduation, I even put a guilt trip on her to attend it for me. Then what do I do, I nearly die and end up on life support and miss the whole darn thing. Only got to see the DVD of it, and it's certainly not the same.

Could you possibly take the train out to CA. I know that they have sleeping cars and maybe you could stay in your cabin and your wife could bring your meals to you. If you felt up to it maybe you could go out into one of the other cars and sit a bit. I don't know, it's just a thought. I know how difficult it is to travel when you don't feel well. I will only travel about 80 miles from home one way. That takes me to my daughters college, once I get there I have to climb two flights of stairs. Which is a feat in itself and then need to either rest on her bed or your papa-son couch from Pier1 before I can do anything else with her. The once I'm home I'm totally wiped out for the night.

I'm sorry I've not been in sooner to post, I had an unexpected friend visit for 6 days. I've been totally wiped out and I'm flaring big big time. I think I need some blood and my foot is killing me to the max. I'm really ready to chop the thing off, so my pain buddy I understand what you're feeling. We just feel it in different areas of our bodies.

I wanted to say Happy Belated Anniversary, you did a wonderful thing for you wife, even though you paid a dear price for it. I'd have done the EXACT thing if it were my anniversary. Sometimes, we put ourselves last to make our spouses realize just how much they mean to us. I'm sorry you're having a difficult time because of it, but it shows how much you care about her.

I hope your appointment goes well today and the neuro has something to tell you other than more tests. If not I'd look into see the guys at the VA. I know it's a trip for you, but maybe they'll figure something out, or at least I hope so. David, hang on tight, I'm throwing you my life line, we'll hold onto each end and support each other. You know you can email me anytime I'm here for you. If I get an email, you'll receive a response that day no matter how I'm feeling. Please remember that okay, hang in there and know I'm praying for you.

Hugs,
Barbara
Posted 4/9/2014 2:47 PM (GMT 0)
Hello, and thanks, Barb.

Boy, reading your update makes mine feel pale in comparison. So sorry you are still going through so much. It's always hard for me, as your friend, to read what you go through on a daily basis.

When I see the neurologist today at 2:15, I will be reporting the incident of the nurse, you can bet on that.

No way to take a train from where I live. It would involve about 2-3 days of travelling, and all the bumps and rattles on a train wouldn't help matters, and the sheer length of the trip would be overwhelming.

If I could take a non-stop flight to where I would be going, it could be possible in theory on a good day, but these days, its almost impossible to arrange. I can't handle two full travel days, let alone the rigors of being there. Just doesn't seem likely that I will be able to make it, unless by some true miracle I have a sudden and major improvement.

Just got a call from the VA in Columbia, now they want me to meet with the head of their oncology department late this month.

My greatest fear today, is that after this 3 week break, the neurologist is simply going to say that the last tests and blood work show nothing. It's been a very frustrating process, which has yielded no answers thus far. I have been seen by him and tested every which way since mid-December, and so far, despite the obvious damage, no firm answer. Such is often the world of neurology.

I think this coming weekend, going to take my wife on a surprise picnic up in the mountains. There's a really nice county park with easy to reach waterfalls only about 30 miles from where we live. She's been wanting to go on one for ages, and this might be the perfect weekend for it.

I hope and pray you get some kind of break, some kind of relief, anything that would ease up your pain and suffering. I sincerely mean that.

Will be back in touch with you soon.

David
Posted 4/10/2014 11:38 AM (GMT 0)
Hi David,

I like and agree with what Octorobo (David in TX) had to say. We use to sing a song: I'll have a new body and have a new life!"

A couple years ago, around 2-28-2012, a 15 year old young boy in our area was diagnosed with pancreatic adenocarcinoma and has spread to his liver, stage 4. He kept telling everyone that he's be just fine either way. He lost his battle on July 5, 2012. I feel the same way and kind of taken his line. Because of his faith, he captured people all over the world.

David, I just take it one day at a time and the past few days, my emotions have not gotten the best of me since being DX and I'm finding a peace that I didn't know I could have!! HARD, that doesn't even come close to describing how I feel.

Again, just to let you know, everyday, you're in my thoughts and prayers.

Dave in Bartlett, TN
Posted 4/10/2014 2:48 PM (GMT 0)
Dave,

In the big picture, I have complete peace of mind and soul, and have so from the start. One reason why I am a "no-worry" kind of person. Wish I could expand on that thought here, but we aren't allowed to. But I think you understand.

On the day to day part, its just hard to deal, to cope, to handle all the pain and fatigue. At that level, I am mere flesh, and not particularly strong or brave or tough, just basic human survival skills at work.

I too, work for the most part, on just concerning myself about the day at hand, not all or any of the tomorrow's ahead of mead. Too overwhelming for me to think to far ahead.

Appreciate your thoughts and prayers.

David

I just visited a nursing friend of my wife yesterday in the hospital. I never had met her before. She is 39, several children, good husband, etc. She is near death from some ultra rare blood cancer that just popped up out of no where a few months ago. They are doing a final and extremely harsh load of chemo, as a last ditch means. It's already not working, she likely not to live past this coming weekend or next week.

Yet as I went into her room, I found her sitting in a recliner, blanket wrapped around her waist, and her bald head covered in a home made knitted hat. She was smiling. She was calm. She didn't look like anyone in pain, even her skin color looked normal. Due to her critical condition, I had to have a gown and gloves on, and could only stay 5 minutes.

What struck me, is she know's she's not going to make it. She knows she is dying quickly. Yet she was gracious and kind toward me. She was thanking me, for my wife's visit to her earlier that day (on her way to work). And she wanted to know if she could do anything for me.

I only wish when the time comes, that I can have that much grace. As I left her room, I was pretty broken up, as I am now, even typing this story. Not because a young woman is dying, but how amazingly well she is taking all of this. She is ready to go home, just waiting for the train to arrive. Her mind and heart is already in the next world, and she is ready to leave her broken body behind.
Posted 4/11/2014 2:40 AM (GMT 0)
Amen
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