Wednesday, June 27, 2012

EGD Tomorrow

That happened to me once. I remember being on my side ...being upset - gagging and the low florescent lighting in the room ...or it was from the computer screens ...not sure ...and then being back in my area again ...feeling just fine. May tomorrow's procedure be uneventful ...please.

I'm already anticipating being NPO at midnight.

I've previously written that I get all squirelly at the idea of not being able to drink water and will become instantly thirsty ...even though I will have consumed so much water just prior to midnight.

That is what I have learned to do to be sure I am hydrated as much as possible for any surgery/procedure. I had been such a frequent flier to the OR thanks to urology issues that I actually developed a pre-OR home routine. (I've written about it elsewhere.) Drink all day/night to be so hydrated that I won't be thirsty. Just before midnight I drink down about 32 oz of water. Don't care about the food ...but cannot stand thirst. I am just like the person who feels the tickle before even being touched ...I get thirsty at just the thought of water deprivation. I know ...WEIRD. And I REALLY want that forbidden fruit water. Totally psychological on my part. Sometimes I am like a camel during the day and don't drink ...either because I get busy and forget or I don't want to think abut bathrooms when I'm out ...and I don't feel like I will die of thirst ...even if I am thirsty. And ...I know ...that behavior is not advisable if trying to avoid kidney stones. At least I'm not as bad as I used to be with that.

Anyway ...earlier this week, I was in the dental chair ...feeling tense and miserable because I loathe having work done at the dentist and I was thinking how I would rather have the EGD. And I hate that too... because I remember gagging when I had one before. Still ...better than the dentist office ...I'm just sayin. Heck ...I'd almost rather have a in clinic ureteral stent removal over being in the dental chair. Although, the operative word there is "almost" ...but, not really.

So ..why the EGD? I've had stomach pain since last November and finally decided to get checked out earlier this month. It was intermittent and I thought maybe it was just having medication and coffee on empty stomach in the morning. But, even when I realized it wasn't ...I didn't act on it because it was not all the time. And I forgot to tell him when I had a routine colonoscopy in December.

But then by spring ...I began having nausea every day and by May ...all day and feeling intestinal... so much so that I was concerned about attending son's graduation - but ..thankfully problem that day.

It reminded me of how I had nausea every day ...all day in March 2009 until June 2009. I thought it may've had something to do with my inadvertently drinking my mother's cat's water ..that I picked something up.

(I know - I never did put that post up. I had forgotten about that funny story. I only remembered recently when reviewing copies of my med recs from my retired pcp that I picked up from new pcp's office. What must my new pcp have thought when he read my former pcp's letter to the gastro doc referring to my drinking the cat's water? And what must the gastro doc have thought when he read it? And then ...I referred to it when I went in to see him in a recent follow up visit and I saw him holding back a grin and his eyes betraying his amusement as well. Why don't doctors just laugh? It is so much more weird when you see they want to ...but are holding it in. I'd laugh with them. :)

Anyway ...back in March 2009, former pcp did have me do a parasite test which came back negative. Tested for ovarian cancer ...also negative. Suggested I have a colonoscopy to gastro doc, but because everything functioning normally, and I wasn't due for one yet since I had a normal routine one in 2006 ...he didn't have me do that. He thought that because I had been experiencing stress with profound emotions over my mother's decline in health and all that entailed, during the last 8 months of her life and then her dying that April ...that it might be emotional in origin. He said that he felt it in his stomach when his parents died. I did get better ...until last November ...except in November ...the pain - like stomach spasms, was new. Stomach pain that did pass after a few minutes.

He recently thought maybe it was IBS. I also explained that my friend of 52 years, Iris ...died last October. And that I have other stresses/concerns in my life as well. I will say is interesting that it started in November ...only a month after her passing.

He had me take samples of Nexium each morning. The nausea left ...for the most part and so did the intestinal part. Not 100% ...but much better ...until recently. He decided to do the EGD because it hurt when he pressed on my stomach above my navel. Sometimes it hurts a tender discomfort feeling.

If this is stress related then I have got to focus on more positive things more often. I KNOW what to do ...but ...I guess I still feel too much ...emotionally speaking. And I have some wonderful blessings in my life. Then the negative is significant and I think I always have this undercurrent of things I have concerns about. I keep a lot of things in that I don't discuss. Wish I could ...but, I can't.

See ...even now ...thinking about a more recent event ...I feel my stomach churning ...tense churning. I never used to be that way. And I have been through a thing or two in my life. So ...why now? Why are things getting to me now? I know in the physical and spiritual ...I have to reject negativity and embrace spiritual, emotional and physical healing. All things are possible with God. I really do believe that.

Anyway ...if anyone feels inclined to do so ...your prayers and positive thoughts are appreciated. :)

It's now 01:40 and finally going to bed. The down side to drinking so much water just before midnight is that you might as well sleep in the bathroom. NOW ...I'd appreciate a foley catheter. ;)

And a big ice cold glass of water. :)


momof2 said...

I was just wondering how many times you had stents placed. I strictured the day after my stent was removed after my ureteroscopy. After a balloon dilation and another stent, they accidentally flushed out a stone during the retrograde pyelography. They kept telling me it was a reaction to the dye and after a week they did an ultrasound and said I was fine. I went to the ER a few days later and they said I had another stone stuck. Again surgery and another larger stent. They removed the last stent and I am still not "feeling better". I went to the ER this week and an ultrasound said my kidney swelling is gone and my creatinine levels are good but now they see gallstones that have shown up in the past 2 weeks (my CT scan from June 10th shows a normal gallbladder and ducts). Also having multiple tooth problems at the same time. Did you have residual intermittent kidney pain when your stent was removed? Granted I had 3 stents in a row with less than a week between insertions. I am just tired of the doctors saying I will feel better soon. I have been praying since April that this will all be over soon but I see your experience and have a feeling I will be in it for the long haul.

momof2 said...

I just wrote a long comment that was erased. Ugh. I too have had a ureteral stricture from a kidney stone. I have had 5 procedures since April 19, 2012. I strictured the day I had my first stent removed. I then had a balloon dilation and a larger stent inserted. When removing this stent the doctor accidentally flushed out a kidney stone during the retrograde pyelography but they thought it was a reaction to the dye. Morphine wasn't even cutting it. After another week of pain, the doctors office finally saw me and did an ultrasound. The PA said my kidney was reducing in size and I should feel better within a week. I ended up in the ER after 3 more days of pain and they did a CT scan, which revealed I had another stone that was stuck in the ureter in the same place the last one was. I was admitted and had another stone removal surgery and a stent placed. I was so angry when I got my records showing the ultrasound report from that day they told me I was improving. The report said I had another stone stuck! This last stent was removed a week and a half ago and I feel a little better but my kidney and groin (where the stone was stuck) has some pain. I went to the ER this week because I'm just not feeling well. They found gallstones and a dilated Common Bile Duct but they said my kidney is no longer swollen. Not to mention the numerous teeth issues I have been having since January. I have been praying for God to heal me but they just keep finding more things wrong. I am only 42 and have 2 children who are scared and confused. I was wondering if you had any residual pain after your stent removal? I get another scan done next week to see but I am constantly anxious over what is happening inside my body. The depression sometimes can be overwhelming. The doctor said this would be a simple procedure and it has turned out to be a nightmare. I live in Jersey too but I moved from northern Ocean County to Atlantic County 5 years ago and the health care is not stellar here. I tried Philly but the urologist I went to knows my urologist here and doesn't want to intervene. Frustrating. Good luck with your procedure today. Thank you, Lisa

momof2 said...

My original urologist's office is poorly run. The phone is never answered. They only have an answering machine and they get back to you 3 hours later. I'm not sure I trust the ultrasound report from the ER about my hydronephrosis being gone because they have messed up before. I am going next week for another ultrasound and KUB and if that says its gone I will believe it. I wish it was only a miscommunication with my original doctor. They shift you around to whomever is available. The second doctor did not want to step on my doctors toes I think
Because they know one another. I am going to see dr. Stifelman at NYU in a couple of weeks since he is an expert on ureter strictures. It is my understanding that a balloon dilation like I had is only a temporary fix and not a permanent solution. I will read more of your posts about your specific experience when my Internet is back up. We lost power Friday during that big storm and the power finally was restored at 3:30am. I truly appreciate you taking the time to answer my questions.

SeaSpray said...

TERRIFIC -you'll be evaluated by NYU urologist (Dr Stifleman - I checked him out after reading your comment)who specialized in ureteral strictures. WOW ..that is some list of credentials he has! I also watched the psoas hitch video he did. Looks so simple and easy. If my surgery could go that smoothly ..I might not resist. :)

I am sure that if he clears you you can feel good about that. He will be able to rule out various conditions and enlighten you regarding post stent removal pain, kidney stones, etc.

PLEASE let me know what you think of him and what he says about your case.And please do NOT be discouraged by what I wrote about myself in this blog ...because again only went on so long because I did not do the surgery ..which was because of the risk factors for me.

And don't lose hope. It is frustrating and discouraging when you don't feel good, but to have teeth, uro and gall bladder issues at same time ...well that would cause anyone to feel challenged and down. You just want to feel good yourself again ..I know.

I would reassure the kids that this is all temporary and when teeth are better, GB stuff handled ..those are two things that will no longer be a problem. Then I would also tell them you are looking forward to meeting with this specialist and are confident if there are any concerns he will take care of it. They are picking up on your fear, etc ...which is understandable. Also is hard for family to see their healthy Mom not feeling well. You will get through this. It sounds like you are on the mend with uro.

But, I can appreciate the fact that if you've been passed around and never felt connected or trust in your doctors and then your fears are validated when you find out they were wrong and you endured more pain than you should have had to when they should've been helping you. I don't blame you. letting you suffer with a kidney stone they said wasn't there when you were telling them and then to find it in report? WOW! I'd be really mad and have NO trust. Also that you never speak to anyone in office - awful.

SeaSpray said...

I go to such a wonderful uro office. Staff is excellent in clinic side and office side and I am quite fond of most I interact with. And I am soooo grateful I go there and not the 1st office I went to when had 1st stone. My main urologist was so ..IS so good with me. Supportive, compassionate, PATIENT with this patient and takes me seriously. he listens. He has gone the extra mile for me so many times. I could go on ..but, you get the picture. And of course they are cutting edge - excellent urologists. If I was going thru what you have ..I'd feel out there and be wondering too. maybe if you felt taken seriously and they acted as if they cared ..this wouldn't be such a bad experience for you. And of course denying your pain when you HAD a stone - terrible.

I love this book I keep picking up to reinforce my faith about healing. It's called "10 Hours to Live" and I'll do a post on it someday. Great miracle healing story - all documented in beginning and then author/patient...shares his insights on healing practical and insightful ..and enlightening. I love that he has all the healing scriptures (in back of book)he and others reinforced his spirit/soul and body with when he was fighting for his life against the deadliest form of cancer. I always make sure I read some before I go to sleep. :) EXCELLENT book!

Well this was so long. Please know I am praying for you and believe you will have a good outcome. And I truly believe that since your kidney healed, etc are doing well. And I think you are doing the right thing in seeking the third opinion and coming from this doc ..believe you can trust him. Again ...please let me know how it goes. When do you meet him?

I hope I helped in some way. Early on, I wished there was someone I could talk to about the uro stuff, but just not much info on line and no people to share with. Now there does seem to be more info. Thanks for sharing your story Lisa. God bless you. :)

momof2 said...

I just wanted to tell you how much I loved Dr. Stifelman. What a change from my original urologist! He was very thorough in explaining my options. My kidney is still slightly swollen and I do still have a narrowing but we are going to wait until October to see if it gets worse. Only if it gets worse will we have to do anything about it and he gave me some options with success rates and told me it would be my choice. He will have me do a renal scan and an ultrasound at NYU on the day of my visit and be able to give me the results on that day! I was very pleased. He made me hopeful that I am on the way to recovery. It was worth the drive. May all be well with you and God bless.

SeaSpray said...

Glad you liked your NYU urodoc! Your instincts were correct to pursue a 3rd opinion. I think it is terrible that the 2nd doc held back because he was friends with the other one. Good riddance!

Sounds like you're a good match with a more competent physician and you must feel more secure and hopeful now.

Do you mind if I ask about your options and what his concern would be if there was a problem? What would he do if you have a completely closed off stricture again or would he even wait that long?

I believe I am healed, but my urodoc originally recommended Cornell doctors in NY and I immediately discounted it because my husband does NOT drive into the city. heck I drive us in the more congested areas down to the shore.

Anyway ...our cases may be apples and oranges with he similarity that we share skin. :)But in my heart of hearts ...I would want to go to the best too ...if I had to ...God forbid.

I feel so healthy now and so removed from a uro relapse.

SIXTEEN months post stent removal - woohoo! :) When I see my urodoc on the 30th it will be 16 months and 13 days. :)

A friend I hadn't seen in awhile scared me last weak when she heard I had had sepsis twice and I know how serious that is. That is really serious thing about closing off. It is a silent condition and you do not know it until everything hits the fan and you are quite ill. Still ...I felt led to resist surgery and go this route.

Anyway ...your new doctor IS following up on you. I never had an ultra sound for the urology stuff. Just the KUBs, Cts and renal scans.

And that you "loved" Dr E. Isn't that a great feeling when you have that kind of trust and good rapport with your doc. :)

Thank you for updating me. Please let me know how it all works out for you Momof2. :)

momof2 said...

The two options he gave were to go in ureteroscopically and use a laser and a balloon with a 70 % success rate and it is less invasive. The second option was robotic resection and cut out the strictured piece with a 96% success rate but it is much more invasive and has a longer hospital stay (3 days). He said the choice would be mine. I neglected to ask what happens if the resection strictures because I was not ready to discuss that yet emotionally. I just wanted him to confirm the findings of my tests. I would probably try the laser first if it does not inhibit my chances for a resection later on. He said my pain/discomfort is from my former Dr. going in 4 times from April through June. He said I probably still have swelling. He prefers to use NYU testing facilities. What he didn't say (which I found from research) is that he was sued by a patient when he accidentally removed the wrong kidney due to an independent imaging company reporting the cancer on the incorrect side. He was found not guilty of malpractice and the independent imaging co. was found to make the same mistake twice on this particular patient's images. I was glad to see that he is trying to prevent these mistakes from happening by using the NYU facilities directly. I also noted that the doctor knew something was wrong immediately and had pathology immediately examine the kidney when the patient was still under but the case did not state the patient's long term outcome. I could not find any other negative things about Dr. Stifelman, only positive reviews of his work. Let me know if you need any more info.

SeaSpray said...

I thought I was the only one holding back on discussing things because I wasn't ready emotionally ...even tho I knew better. I still do it but am going to be honest about something when I see him at tend of month.

I do that because I don't want to open a can of worms because if you complain ..they feel obligated to look into it and maybe they should be, but I don't want to be the patient who cries wolf either.

I actually went into a visit to office Christmas week 06 totally unprepared with the questions about the surgery that I was being referred out for. Instead I baked and baked ..when I should've been preparing questions. fear and denial can be strong and I was definitely in that mode back then and for awhile.

Anyway, back in June 08 because I had been refusing surgery after he stented me due to a relapse ..he came to me in post-op and said I had two choices ..get the surgery (which was the consensus of 4 urodocs - him, his 2 partners and the one I chose to operate if I had gone ahead with it in feb 07.
Anyway ..get the surgery or come in once a yr and be stented. Also when he does that ..he lasers scar tissue away. And I guess dilates too since he did when opening first stricture. Although if I had done a yearly stent maintenance maybe the stent would just be the dilator since in for so long and not blocked.

The thing is's not feasible to do that for the rest of my life.

So ..even tho I said stent me once a year plan was to lose the weight I need to and I lost some but no where what I should have and I could've done it 10 x over by now.

I think with my weight that laparoscopically might not be possible - not sure what the weight criterion is for robotic surgery.

# days is not a bad stay at all.

had I gone through with the recommended open surgery and assuming I did not develop a leak post-op ..they would've done the resection at the distal end and hitched the good ureter to my bladder (psoas hitch) They would've gone in through my abdomen using my old c=section scar which is vertical towards navel. I'd be re-stented in the OR, no food 3 days post op, discharged in a week if all went well.

God as my witness ..I know I could handle all that with the hope I'd be healed permanently. I had 2 c-sections and I know the pain of that kind of incision. Of course now I'd have to deal with an indwelling stent and I'm 24 yrs older since my last c-section, diabetic and recovery would be more draining. I noticed a difference in aging 8 yrs between babies ..that I was much more tired the 2nd time around. But, it would all be worth it and I could deal with it.

What scared me is that I was so high risk, my urodoc was referring me out and really wanted top notch surgeons and for me to be in a tertiary care ctr where doctors are on staff 24/7 and on a urology wing. he said the first 18 hrs would be critical. A leak could lead to sepsis and I'd have to go back in the OR. that was worst case scenario, but I allowed the possibility to cause me to fight hard to stay out of that surgical situation. It is the only reason. I was concerned about being left with permanent complications or worse. I'm a glass half full person and faith, but I lost that for awhile during this process and allowed fear to take over.

I've just never been willing to take the risks.

He does sound like a good doctor and I am happy you've connected. Sounds like you are in good hands. :)

Was it hard to navigate around the city to get there?

SeaSpray said...

Oh,a 96% rate is EXCELLENT!70% still decent odds-I'd opt for that procedure 1st.You can always get the robotic if the first one fails.

I know this may sound weird, and I am sorry you are going thru this and I pray I am now done with it and permanently healed and that you will be too ...but it feels good to finally have someone to talk with about this ..going through some of what I did ..who understands. people are empathetic ..but no one can know what these stents and enduring this whole process is really like and all the uncertainty ..pain/discomfort and utter frustration ..with life on hold is like. The life on hold I guess I did to myself because I avoided surgery. I just did not have the green light about it and can anyone blame me. I even had a pcp once say to me when I said, "What if I die?" he said .."then you DIE!" Didn't motivate me to want to do the surgery. I've had friends and family say just do it ..take the risk've lived a good life. Did not motivate me to do it.

My current urodoc did all he could and has really worked with and for me to facilitate healing in me giving me every opportunity to heal ..even tho I know his partners and he think I should be doing it. But ..after this last big one ..God forbid if there was a relapse they will expect me to go to surgery.

But so far ..I am doing well.

The only concern I have now is the silent part of this chronic condition and developing sepsis or more kidney damage if closed off and my body doesn't warn me enough for me to notice.

But i said ..I am healed and so I usually don't even think about that. It is only because I am writing to you now that I am thinking about it. And will be when I go in to uro appt.

Regarding testing I was erroneously told I had a weak chest wall last Novemeber after a echocardiogram and lived with that info for a week, went into cardiolgist totally anxious and when he read report he said I did not have one. Thank God! Unfortuanately I have seen mistakes made in different areas of medicine and 100% believe you need to be your own advocate and never assume everyone is right and no one makes mistakes. And if a pt can't be their own advocate then they need someone to do it for them to stay on top of things.