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Old 10-06-2012, 09:26 AM   #41
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Re: Because this is a well visited forum, I need some help.

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Originally Posted by kaylabelle05 View Post
I totally get what you are saying. And this has been my fear since this first started back in 2005. With DD, I had blood in my urine until 36 weeks and then no more blood. It totally stopped. By that time I had been in the ER over 10 times, admitted 4 times for pain control and I have no idea how many stone passed as I never caught any but they kept disappearing and reappearing in the U/S they did.

I honestly have tried oral narcotics. In fact, I had way too many at home. they kept giving them to me even after I asked them not to. I didn't use them and if I did, it was 1-2 per bottle of 30. And now my heartburn told me this weekend (I was trying to stay out of the ER as DH & DS were camping) that that was a bad idea. I slept upright with my chest on fire from my heartburn. With Zantac being taken at every Vicodin dose plus Mylanta and Rolaids.

I have tried Dilaudid too. And I have BAD reactions to it; projectile vomiting, uncontrollable shaking, and hallucinations.

And because I have been through this over 20 times, I know what works and what doesn't. I would take Toradol in a heartbeat but I can't while pregnant. And not one medical person has given me a safe alternative for pain control while pregnant other than narcotics. Trust me, I have been asking since my first attack in April 2005.

I know that everything I have done, said, or tried makes it sound like I am drug seeking. But how does one get around that if they actually have a pain problem? And I tried Pain Management. They won't take me until I deliver.

I have done everything I have been asked to do and even did things (like contact Pain Management and Urology without anyone referring me) that I figured wold be helpful. I listed to what my doctors tell me to do and ask them what I need to do to help them and help myself. I do not like the position I have been put in.
I really have compassion for your situation because I've been in a similar one. When not pregnant I suffer from cysts on my ovaries. I have had a few ruptures, but whenever they do an ultrasound they don't see anything in the area. The cyst have been about 7mm-8mm so the amount of fluid in my abdomen is miniscule, doesn't mean It's not extremely painful, but I had a PA call me a drug seeker (And that was the FIRST time I ever went to the ER for pain for anything). When I called my OB, who diagnosed the cysts, she told me an ultrasound would not even show a rupture unless it was a massive cyst. Anyway, my idea is that you bring your bottles full of pain meds to show them you CANNOT take them. I have never met an addict (Sadly I know quite a few) that can have narcotics in their possession for months. Mostly people end up in the ER because they run out. I would think it is very rare for someone to only come to the ER for an IV fix without having a narcotic addiction. I would think that would be proof even for Dr. Y. I know how frustrating it is to be in a lot of pain with no way to prove it. I wish they had some kind of machine they could hook up to your brain to prove you are in pain and the level, then they would KNOW who was lying and who wasn't. I hope if this happens again you get treated better.

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Old 10-06-2012, 09:35 AM   #42
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What are enteric coated meds?

and Lortab? I have read about that but have no clue what it is.
Lortab is the same thing as Vicodin, just another trade name. Enteric coated meds have a coating that does not allow them to dissolve until they are out of the stomach as to prevent stomach upset. Plain Vicodin is not enteric coated nor timed release so can be crushed with no issues.

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Old 10-06-2012, 01:05 PM   #43
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Re: Because this is a well visited forum, I need some help. Update #29

I would definitely make a complaint, but you need to make sure that your care is managed by your OB/GYN. ER doctors want to do the least amount of work! I would explain the situation to your OB/GYN so you could have him paged whenever you need to go to the ER. That way he could speak to them via phone and explain the situation.
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Old 10-06-2012, 02:10 PM   #44
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Re: Because this is a well visited forum, I need some help. Update #29

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OP, I think you really need to consolidate you care. Seeing the urologist, OB, PCP and the ED all for pain meds is going to come across to some as seeking behavior. I would be concerned if I were one of your providers and you related your story to me. You have multiple oral narcotics at home and are looking for narcotics by routes that are faster/more concentrated than oral and now you have more than one prescription for fentanyl from more than one different doc. I am not accusing you of seeking, but from the outside, you have some behaviors that may look that way. I would suggest talking to your OB about how to control your heartburn so you can use oral meds to control your pain. The other option is to simply fill your prescription and worry about insuance reimbursement later.

You might look for another urologist, but I suspect that it will be difficult to find one willing to put in a stent until you deliver. You have mentioned having no evidence of stones other than the pain. I still don't understand this statement. If they are seeing stones when they scan you, why do the say they don't see evidence? Lastly, i would be straining my urine every time to try to catch a stone.
I have one Rx for Vicodin that is old and I had 10 pills in it. I did not ask for the Rx from my PCP, he is the one who suggested I try it. And my heartburn? Is NOT normal heartburn. I have had to go to the ER for it before. I wish taking the OTC meds would help it (Zantac, Mylanta, Rolaids). I have all of them right next to my bed because of how it has been.

Fill my Rx? It is a $333 prescription that cannot be broken up. I don't have that money on hand right now. I would if my rental house was being rented and I had the $900 they give us.

I am going to be talking to my PCP about seeing a diff Uro. Her lack of wanting to do anything for me is annoying. And the only reason I haven't is because with my stones and having to do the basics for home, it has been too much. And trying to hunt down a Uro that is willing to see a kidney stone patient who is preg is not easy.

I can't tell you why the doc did not believe me. I have U/S of stones being in both kidneys. And then the subsequent U/S have shown fewer stones. I would think that is obvious evidence but according to the doc it isn't enough. I need hydronephrosis and/or blood in my urine. And I have been straining every time I go. The only few times I haven't is when #2 happened and when I was out of the house. Though I ALWAYS check and have a glove in my purse in case one comes out.
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Old 10-06-2012, 02:42 PM   #45
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Re: Because this is a well visited forum, I need some help. Update #29

I honestly have considered "kidnapping" all 3 of my docs (PCP, Uro, OB) and getting them in a room together to see about how they ALL need to work together to get me some continuity of care. I am getting tired of "passing the message" between all of them and I hate having to do all the work. I know it is my medical problem but I need some doctor to take care of it all. Is there a Uro OB?

It has been extremely frustrating to have to deal with all of this stone stuff and think that I may end up like I did during DD's pregnancy. My thought was when I found out I had stones was to be on the offense instead of the defense like it was with DD. But then I find out I had HUGE stones. But until then I had no idea I even had them (no pain at all). Then 14 weeks hit. And it has been trying to keep one step ahead of these stones. And I have listened to my doctors about what I need to do. I sleep more, drink more water, eat healthy, try to keep my stress at a low level. I am even seeing my therapist because I do not want these stones to put me into a deep depression like I was with DD. And every time I thought I was past the "hard part", I would get thrown under the bus by these stones. The past 2 ER visits were the ones I had no choice but to go in for. Those were 0-10 pain in less than 45 mins. And to be treated like I was because I don't want to put my body through my chest being on fire and because I listened to my Uro & OB, it is beyond mentally strenuous.

I just want to be pain free. I want to be able to go shopping at the Commissary 35 miles away without having to check out where the hospital is "just in case". I want to get the things done for my house (cleaning, laundry, dinner) without having to worry about getting a nap. I want to make it through a weekend without wishing I don't even up in the ER. I want to be able to get the things for the baby that I need to get. But I can't do any of this. Most days are good. But some days aren't. In 6 weeks I have had 5 ER visits. For each ER visit, I need at least 2 days of rest, sometimes 3. But I had to get back into being a mom or fight for my rights immediately afterwards.

My biggest fear is that the pain will start again. Not a "stone attack" pain but the constant pain that started during DD's pregnancy at 26 weeks. That was when my OB put me on the patch. My pain was constant, 5-7, every minute of every day. I was told over and over again that I should not be in pain. But I was and no one would believe me (except my OB) and no one wanted to find out why. And the moment DD was born, the pain went away completely. The pain never stopped, even with the patch, though the patch did lessen/deaden it. I could not even be on my right side, I could not touch my right side. The pain exhausted me to the point I was sleeping whenever I could. I even lost friends because I was so depressing. Anything but the basics was neglected. And the side effects of the patch were horrible. I was on 100mg of Benadryl every 4 hours (did not help me sleep either) and I still itched horribly. Phenerghen every 6 hours. Every night that I put on the patch (changed it in the AM every 3rd day) I would not sleep. I stayed up the whole night playing crosswords and word finds. The sheer exhaustion made it possible for me to watch a LOT of TV, sleep when I could, and my whole life just shut down for 12 weeks. Then DD was born.

And the fear of that pain is looming over my head every day. I get a bit scared when my pain is constant at a moderate level. I actually get happy when the pain level moves up or down. That means that the pain will eventually go away.

Other than asking for a new Uro, I don't know what to do. What is a person supposed to do when they are in my shoes? OB doesn't want to treat the stones, Uro doesn't want to see me while I am preg, PCP has never had a case like me, and ER thinks I am a drug seeker. My only thought it see a Perinatologist. But I don't know if they know how to deal with chronic kidney pain in pregnancy.

It is funny, I keep hearing from other people about women who have had kidney stones while they are pregnant. And these women do not have the problems I am having. I think someone needs to start researching this more and needs to be taught how to deal with woman who is pregnant and has kidney stones. No one seems to know how to deal with these women.
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Feed your children human milk as long as possible, it might save their life. It did my son's.
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Old 10-06-2012, 02:46 PM   #46
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Has your gallbladder function been assessed? Severe heartburn like that can be caused by gallbladder dysfunction. I have a friend who recently had kidney stones and gallbladder problems postpartum. Her surgeon said they are commonly seen together and thought they had some connection to the meds she was on for hyperemesis gravidium in pregnancy. She was also on proton pump inhibitors for acid reflux for years.
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Old 10-06-2012, 03:07 PM   #47
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Originally Posted by kaylabelle05
I honestly have considered "kidnapping" all 3 of my docs (PCP, Uro, OB) and getting them in a room together to see about how they ALL need to work together to get me some continuity of care. I am getting tired of "passing the message" between all of them and I hate having to do all the work. I know it is my medical problem but I need some doctor to take care of it all. Is there a Uro OB?

It has been extremely frustrating to have to deal with all of this stone stuff and think that I may end up like I did during DD's pregnancy. My thought was when I found out I had stones was to be on the offense instead of the defense like it was with DD. But then I find out I had HUGE stones. But until then I had no idea I even had them (no pain at all). Then 14 weeks hit. And it has been trying to keep one step ahead of these stones. And I have listened to my doctors about what I need to do. I sleep more, drink more water, eat healthy, try to keep my stress at a low level. I am even seeing my therapist because I do not want these stones to put me into a deep depression like I was with DD. And every time I thought I was past the "hard part", I would get thrown under the bus by these stones. The past 2 ER visits were the ones I had no choice but to go in for. Those were 0-10 pain in less than 45 mins. And to be treated like I was because I don't want to put my body through my chest being on fire and because I listened to my Uro & OB, it is beyond mentally strenuous.

I just want to be pain free. I want to be able to go shopping at the Commissary 35 miles away without having to check out where the hospital is "just in case". I want to get the things done for my house (cleaning, laundry, dinner) without having to worry about getting a nap. I want to make it through a weekend without wishing I don't even up in the ER. I want to be able to get the things for the baby that I need to get. But I can't do any of this. Most days are good. But some days aren't. In 6 weeks I have had 5 ER visits. For each ER visit, I need at least 2 days of rest, sometimes 3. But I had to get back into being a mom or fight for my rights immediately afterwards.

My biggest fear is that the pain will start again. Not a "stone attack" pain but the constant pain that started during DD's pregnancy at 26 weeks. That was when my OB put me on the patch. My pain was constant, 5-7, every minute of every day. I was told over and over again that I should not be in pain. But I was and no one would believe me (except my OB) and no one wanted to find out why. And the moment DD was born, the pain went away completely. The pain never stopped, even with the patch, though the patch did lessen/deaden it. I could not even be on my right side, I could not touch my right side. The pain exhausted me to the point I was sleeping whenever I could. I even lost friends because I was so depressing. Anything but the basics was neglected. And the side effects of the patch were horrible. I was on 100mg of Benadryl every 4 hours (did not help me sleep either) and I still itched horribly. Phenerghen every 6 hours. Every night that I put on the patch (changed it in the AM every 3rd day) I would not sleep. I stayed up the whole night playing crosswords and word finds. The sheer exhaustion made it possible for me to watch a LOT of TV, sleep when I could, and my whole life just shut down for 12 weeks. Then DD was born.

And the fear of that pain is looming over my head every day. I get a bit scared when my pain is constant at a moderate level. I actually get happy when the pain level moves up or down. That means that the pain will eventually go away.

Other than asking for a new Uro, I don't know what to do. What is a person supposed to do when they are in my shoes? OB doesn't want to treat the stones, Uro doesn't want to see me while I am preg, PCP has never had a case like me, and ER thinks I am a drug seeker. My only thought it see a Perinatologist. But I don't know if they know how to deal with chronic kidney pain in pregnancy.

It is funny, I keep hearing from other people about women who have had kidney stones while they are pregnant. And these women do not have the problems I am having. I think someone needs to start researching this more and needs to be taught how to deal with woman who is pregnant and has kidney stones. No one seems to know how to deal with these women.
Honestly if your pain is that bad I would INSIST on finding a new urologist that WILL treat you now. You have to be your own advocate here. Don't take no for an answer, find someone that will treat you. Even if you have to drive the net city or two over it would be worth it. Start calling all the urologists in your area and ask if they would treat a pregnant woman with visible stones on radiologic tests? Don't even bother going into one that says no.

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Old 10-06-2012, 04:13 PM   #48
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Re: Because this is a well visited forum, I need some help. Update #29

I'm sorry you are in so much pain. One of the things I do with my son's GI is bring back in any narcotic script or unused narcotic med if the prescribed one doesn't work or wasn't filled. He never actually wants it but it helps him know that what ever was Rx'ed previously wasn't filled/used. I started doing this after I got labeled a drug seeker by our old pharmacy because I refilled Tylenol with Codeine once for DS and only because his current Rx bottle had expired. I only give maybe 1/2 to 3/4 of one bottle a year so the med always expires before it is used. It sucks to have to go to this length but unfortunately there are a lot of junkies out there so people get questioned even if they aren't one. I just have to remind myself it isn't personal.
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Old 10-06-2012, 06:34 PM   #49
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Re: Because this is a well visited forum, I need some help. Update #29

I apologize for misunderstanding. You had a couple of posts in this thread and the previous one about returning unused oral narcotics and having had lots of oral narcotics and taking vicodan several times recently. I misunderstood and thought that you had multiple bottles of narcotics at home.

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Honestly if your pain is that bad I would INSIST on finding a new urologist that WILL treat you now. You have to be your own advocate here. Don't take no for an answer, find someone that will treat you. Even if you have to drive the net city or two over it would be worth it. Start calling all the urologists in your area and ask if they would treat a pregnant woman with visible stones on radiologic tests? Don't even bother going into one that says no.

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I agree with this. I would also consider talking to your OB about referral to a perinatolgist. A perinatologist should be better positioned to help with your pain and likely has better contacts with other specialists who work with pregnant women.

When I came back to check this thread, I missed it and wound up doing a search. In that search I clicked on one of your threads from a couple of months ago. I saw that you wanted a PICC line to make it easier to get meds and to rehydrate. I wanted to mention that if you are asking your urologist or the ER docs for a PICC line, they may find that suspicious. A PICC won't generally remain in place the remainder of your pregnancy and it would be unusual to put in a PICC for intermitent pain medication or to rehydrate an otherwise healthy young woman.
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Old 10-06-2012, 07:57 PM   #50
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Re: Because this is a well visited forum, I need some help. Update #29

I would definitely see if you could be seen by a perinatologist or another urologist who will treat a pregnant person. It just isn't right what you are going through. You can't be the only one who has gone through this. They need to treat you.
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