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Old 09-12-2012, 07:47 PM   #11
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Re: It happened again

I feel like crying. A post in my journal. I am just feeling so disheartened.

So I went to my doc (awesome guy BTW) today because Pain Management said they would not see me while I was pregnant. And Urology said they wouldn't see me until I deliver. So no one to talk to about my pain and no one to talk to about my stones. gotcha! Well I talked to my doc and I just didn't know what to do. I did ask him about getting a PICC line again but this time I asked him if I could see about getting a Rx for IV supplies. So I could get hydrated when I just couldn't drink. That happens after a stone attack and when I am in pain (which has been all day today). He asked me to do some research as he never had a patient that needed that. So I started with a medical supply store. They couldn't help me but sent me to Apria Healthcare.

Well I went there and the front desk lady was so helpful! She said they do deliver IV supplies and to give the info about the RX to my doc with a fax #. I left a message on my doc's machine with the info. Well after trying to figure out who to ask about a PICC line it popped into my head that my sis would know! So I called her and she shot me down as soon as I opened my mouth about it. But this is typical of her. Yes I know what I am asking for, I know and understand the risks. But everyone needs to remember, I am dealing with horrific kidney stone attacks that are only going to get worse. My pain is not going to just go away and having to waste time in the ER to get blood drawn and an IV started is not fun times for me. Also I have scarred my antecubital space in both arms because of how many blood draws and IV I have had. You can actually see the scars there.

So I am all depressed after getting off the phone with my sis. It doesn't help that she tells me I need to see my doc for a kidney stone attack instead of the ER. Well #1 happened at 11:30pm. #2 happened at my OB's office and continued when I drove home. #3 happened on Saturday afternoon. My doc was not open. And kidney stone attacks happen at night most of the time!

I start doing some research when I get home and find this: "For some, especially those who suffer a lot with stones, having a PICC line inserted is considered...... It is a drastic measure but one which has been successful for some people." And after having it bad with DD's pregnancy, I can't do that again.

So while I could find a doctor who could do the procedure, I am not sure I would find one that was willing. I also would like it so I could do home hydration and not have DH stick me 5 million times to get a line in. (DH is a Corpsman who does this on the Marines with big veins. I don't have big veins)

So the best part of my day? Remember how I said that both Urology and Pain Management won't touch me? Well I called the local OB/GYN and they will accept me as a patient but they won't deal with any of my kidney stone issues. So I am untouchable? I think my friend said it best, a perinatologist would be the way to go. Not looking forward to it since I am VERY against all intervention during delivery but I need someone to look after me and Squishy while Squishy is still inside and me full of stones. When did I get the "do not touch" on my head?

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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 09-12-2012, 08:06 PM   #12
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Re: It happened again Update #11

You need a maternal nursing service. Im on daily care for my HG through a company called Healthy Connections. If I need an IV, a nurse shows up at my door with supplies and puts it in. They call me daily to check up on me, get my weight/ketones, check my pump, etc. Your OB can order this service. He'll probably have to prescribe the IV pain meds, but the hydration part can all be done through the nursing service.
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Old 09-12-2012, 08:49 PM   #13
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Re: It happened again Update #11

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You need a maternal nursing service. Im on daily care for my HG through a company called Healthy Connections. If I need an IV, a nurse shows up at my door with supplies and puts it in. They call me daily to check up on me, get my weight/ketones, check my pump, etc. Your OB can order this service. He'll probably have to prescribe the IV pain meds, but the hydration part can all be done through the nursing service.
Except I am fine when not in pain. I go about my daily life like nothing is wrong, not even the fact I am pregnant! Though I can't bend over like I used to.

I will have to ask my new OB that if it is even possible. What state are you in? I have never heard of this service. I don't even know if my insurance will pay for it (Tricare).

Thank you for the info! That is extremely helpful
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ME: Dagny 34. Married 7/16/04 to: DH: 36. US Navy Corpsman. DS: Quinn 15. Future Mad Scientist DD: Kayla 8. Future Pink Mermaid Ballerina Princess
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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 09-12-2012, 09:01 PM   #14
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Re: It happened again Update #11

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You need a maternal nursing service. Im on daily care for my HG through a company called Healthy Connections. If I need an IV, a nurse shows up at my door with supplies and puts it in. They call me daily to check up on me, get my weight/ketones, check my pump, etc. Your OB can order this service. He'll probably have to prescribe the IV pain meds, but the hydration part can all be done through the nursing service.
I just did some quick research and that place I said, Apria Healthcare, does the same stuff your company said.

From their site:
Quote:
With more than 30 years of experience servicing the needs of patients, we know that infusion care that is provided in the home or in an alternate site infusion suite can help promote better health and an improved quality of life. In addition to the benefits of receiving treatment in familiar surroundings, home and infusion suite IV care has economic advantages. Treatment is often less expensive and, in many cases, provides better outcomes ó and thatís good for everyone.
Especially, Pain and palliative care services
Though I am not how I can go about getting it set up........ I doubt a regular OB will do this. I think the high-risk OB is my only option. Thank goodness I am calling them in the AM to find out.
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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 09-13-2012, 08:24 AM   #15
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Re: It happened again Update #11

I've had 2 regular OB's do this. While Im on my pump, I AM totally normal, dont really need anything, but if I did need the IV, it's less than an hour away. Your OB(staff) will have to call your insurance and make arrangements as well as calling the company from what I understand. They have to send orders for it. It takes about 48 hours to get it set up (this time, last time they were there that afternoon to hook me up). You may have to call Tricare and ask if they'll cover it. They should. Hope you get some answers soon!
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Old 09-13-2012, 08:37 AM   #16
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Re: It happened again Update #11

You need a different urologist. I have Medulary Sponge Kidney disease that causes chronic stones. I pass stones regularly. I caught a pretty decent stone recently(over 1cm). I have had kidney failure due to a HUGE stone obstructing my UPJ and not allowing my right kidney to drain. I had multiple nephrostomy tube placements and 2 inpatient hospital stays. I am monitered during pregnancy and in fact just switched urology practice at 13weeks. There are not a ton of options during pregnancy. Unless you develop a health crisis that is life or pregnancy threatening. I have never heard of a pregnant woman not being followed and offered pain medication during passing a kidney stone. You are going to have to FORCE yourself to drink. I try for a gallon of water per day in addition to any "treat" drink I might have like a small coffee. Every person has a different pain tolerance. Mine is very high. I know your options are likely limited because of tricare but there must be another urology practice even if you have to drive.
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Old 09-13-2012, 08:55 AM   #17
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Re: It happened again Update #11

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You need a different urologist. I have Medulary Sponge Kidney disease that causes chronic stones. I pass stones regularly. I caught a pretty decent stone recently(over 1cm). I have had kidney failure due to a HUGE stone obstructing my UPJ and not allowing my right kidney to drain. I had multiple nephrostomy tube placements and 2 inpatient hospital stays. I am monitered during pregnancy and in fact just switched urology practice at 13weeks. There are not a ton of options during pregnancy. Unless you develop a health crisis that is life or pregnancy threatening. I have never heard of a pregnant woman not being followed and offered pain medication during passing a kidney stone. You are going to have to FORCE yourself to drink. I try for a gallon of water per day in addition to any "treat" drink I might have like a small coffee. Every person has a different pain tolerance. Mine is very high. I know your options are likely limited because of tricare but there must be another urology practice even if you have to drive.
I wondered if I did need a new one. My regular doc is awesome and I know I can get a referral to a new Urologist.

I do drink water. It is all I drink except on a rare occasion I have a hot cocoa or a Slurpee. I try to drink at least 80oz a day at a minimum (I have a 22oz water bottle that I fill at least 4 times), It is harder to drink more than that because I just get so full.

Tricare is "ok" as long as my doc put "2nd opinion" on the referral.

My pain tolerance was high before but I have had to make it go higher due to the ER making me wait forever for pain control. Hence why I am having my doc write a note that I am not in the ER for fun but I need pain meds.

Thanks for the help. It is nice to know I am not the only one is the same boat. I am so sorry for your problems. I thought I might head down the kidney failure path soon myself with my repeated stones and my lack of help during an attack.
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ME: Dagny 34. Married 7/16/04 to: DH: 36. US Navy Corpsman. DS: Quinn 15. Future Mad Scientist DD: Kayla 8. Future Pink Mermaid Ballerina Princess
DS2: Colin 14 monhs. Walking toddler!
Feed your children human milk as long as possible, it might save their life. It did my son's.
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Old 09-13-2012, 09:06 AM   #18
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Re: It happened again Update #11

Feel free to pm. I have been dealing with this for 15 years and deal with painful stones at least monthly. I have a DIY technique that helps but it is a bit tmi
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