MaternalMusing

A Personal Adventure Into Parenthood

Nephrostomy Tubes: A Pregnant Lady’s Guide From a Mom Who’s Been There. March 9, 2015

NOTE: I am not a medical professional in any way, shape, or form and this entry is purely based on my experiences as a pregnant and post-natal nephrostomy tube patient. I am definitely willing to share my story but obviously the best person to address your burning questions to would be your OB, interventional radiologist or urologist.

Welcome to my personal experience related blog about nephrostomy tubes! When I first had mine inserted I tried googling the procedure for pregnant ladies and the experiences others might have had…and the pickings were mightly slim! I’m putting this out there to hopefully answer some questions or allay the fears of some other poor mommy to be who gets an unexpected accessory for their pregnancy!

What is a Nephrostomy Tube?

A nephrostomy tube is a long piece of plastic tubing that is inserted into your kidney through your back through a ‘conscious sedation’ procedure with an Interventional Radiologist. It’s purpose is to drain urine from said kidney due to a blockage of some type. The incision will probably be midway between your ribs and your hips on one (or both if you’re super lucky) side and is about 1-1.5 cm long. The tubing has a loop on the end to hold it into your kidney and will extend to about your knees when it hangs outside your body (stylish I know). On the outside end there will be a stop-cock for sterile flushing of the tube and a plastic bag that will catch your pee! There is a valve at the bottom of the bag that allows you to drain the bag. Where the tube exits your back you will either have A) some strong medical tape to pin it down and hold it inside/in place or B) a disk and stitches to secure it to your back and make sure that sucker stays put.

Personal note: I got the stitches every single time…while chasing an active 4 year old and with all my appointments etc I was taking no chances that thing was coming out…

What is a Stent?

A stent is another option that may or may not be available to you. It is another long plastic tube but it is completely internal, going from a loop in your kidney, down your ureter and ending in another loop near the top of your bladder. Again its purpose is to widen the ureter and help drain the kidney. This procedure is typically done by your urologist under general anesthetic.

Personal Note: I have actually had 4 stents in my lifetime but never one during pregnancy!

Why choose the Nephrostomy Tube?

I imagine you’re wondering why on earth anyone would choose to have the tube when you could have a discrete stent on the inside! Well there are a few notable reasons and I’ll use my own experience to help you understand why the ugly tube might be the best option for you.

A) The procedure itself

  • The tube is placed during a conscious sedation. Essentially they dope you up with a couple of drugs that will cause you to feel pretty darn awesome. Although I do remember the procedure where the tube was placed it seemed to happen really quickly and was pretty hilarious at times. The sedation wears off pretty quickly and is pretty safe during all stages of pregnancy.
  • The stent is placed during general anesthetic. This is the type where they put you out completely and where the problem lies for pregnant women. General anesthetic causes your body to become pretty darn relaxed…and this can cause pre-term labour. My issue arose 21 weeks into my pregnancy and since the viability marker (aka when the nicu will actually take on life-saving measures for baby) was still 3 weeks away we didn’t want anything to trigger that possibility. The stent is also harder to place when you have a giant belly going on so many urologists aren’t all gungho about giving it a shot.

B) Visible vs Invisible

  • The reason this conversation has even come up for you is likely that there is a blockage that prevents your kidney from draining. This can be due to kidney stones like myself or sometimes the baby just postions him/herself on top of your ureter, smooshing it down until nothing can get through. As ugly as the tube was, and as inconvenient it was having it hanging outside where it can be seen and get caught on stuff I really liked the fact that I could monitor if it was working and flush it if needed. I never had to wonder if my tube was blocked because I could measure my output and if I didn’t see anything, after drinking a few large beverages, I knew I needed to call my dr. The danger of a blocked tube or stent is obviously pain but also infection. I’ve had experience with a blocked stent in the past and the infection caused by the blocked output landed me in the ICU with a 105 degree fever which would be devastating to baby while you’re pregnant.

C) X-ray Exposure

  • The Nephrostomy tube is placed through x-rays and everyone who’s been to any clinic while pregnant has seen the signs that x-rays aren’t recommended for pregnant patients. Unfortunately sometimes it can’t be avoided and this worried me a lot! I spoke with my OB and my radiologist and was told that the big danger period for x-rays is during the first trimester and because my tube wasn’t inserted until 21 weeks gestation I was at a lower risk. Also to cause damage to the baby you’d have to have thousands of x-rays and although it felt like it at time I was only getting, on average, 2 a week. The Interventional Radiololgy team was amazing though and did their best to minimize my exposure including minimizing their x-rays and using multiple lead aprons around my belly.

My advice here to to ask a lot of questions of all of your medical teams (I saw 4 departments: Infectious diseases, Urology, OB, and Interventional Radiology). Compile the information and make the best decision for you. Given our situation I would choose the tube every single time, as hard as it was, because it was the best for me and the baby.

Initial Insertion

For the initial insertion you’ll be sedated which makes it very manageable. I remember the procedure but it seemed to fly by and although it was uncomfortable, they are cutting open your back and jamming a tube into your kidney after all, it wasn’t unmanageable.

You’ll be asked to sign off on the procedure and they’ll go over all of the risks. They are numerous but unlikely and in all my time with the tube I never had any truly serious issues. However my situation was pretty critical during the insertion and since I was on copious amounts of hydro-morphine my husband had to sign the forms for me. Make sure you have someone you trust there to help you and hold your hand the day of! It’s natural to be nervous, I bawled my way into the procedure room.

Once you’re in the room they’ll have you ‘hop’ up on the procedure table. Assuming your belly is of manageable size you will like on your front, or on your side if you’re the size of a whale like me, and they will ‘prep’ you. This involves them cleaning off the insertion site with choloro-hexadine, shaving if you’re part-yeti (jokes ladies!) and placing a drop cloth with a hole in it over the site. The hole is lined with adhesive to hold it tight to your skin and hopefully prevent you getting any blood/urine/general ickyness on yourself during the whole thing, not that you’ll care. Next they’ll start the IV meds and get you feeling cheerful.

They’ll take a few x-rays to confirm the hydro-nephrosis (aka swollen, blocked kidney) and then start freezing the area. I’m told it feels like bee-stings but since I avoid bees like the plague I can’t make the comparison. It definitely pinches/burns but just think of how much it would suck without the freezing…

They’ll them cut into your back to form the tract for the tube. This will hurt, I’m not going to lie to you, but if your kidney hasn’t drained in days I can promise you the relief you’ll feel after the kidney drains will make all of this worth it a million times over. Once the tract is open they’ll take some plastic tubing and for all intents and purposes, shove it into the new incision and into the kidney. They need to put some muscle behind it to get it in, so don’t freak out! Take a deep breath and bear it because the faster it’s in the better it is on everyone. Feel free to say a few bad words, I did and its nothing they haven’t heard before.

After the tube is in place they’ll inject some sterile dye to make sure it’s draining and then they’ll either tape or stitch it to your skin and attach the bag. Then they bandage you up and you’ll be sent whereever you’re supposed to go to sober up. After the inital insertion you need to remain lying down for about 4 hrs but since you’ll be high as a kite for a large portion of that it’ll fly by. They will give you some pain killers but I found that Tylenol 3 was adequate for managing it after. As I said, when the kidney is draining again you’ll mostly feel relief.

When can I go home?

Hospital stays suck so I can understand you’ll be anxious to go home and try to get used to your new accessory. Assuming baby is holding up okay, no infection and a tube that’s draining well you should be able to go home a day or so after it’s put in. I was in hospital for about 4 days after but after having a previous pre-term baby and pretty large stones they wanted to make sure all was going well before sending me off.

When they send you home they should arrange some type of home or community care for you because the bandages for the insertion site need to be changed once a week at the bare minimum. I changed mine every other day, and to cut down on our nurses appointments we had them order us supplies for home and my amazing husband learned how to flush, clean and bandage the area himself.

Bandaged Nephrostomy Tube! The blue is the start of the external tube although it becomes wider and clear after the stop-cock. The bump in the bandage is the disc that is stitched into the skin.

Bandaged Nephrostomy Tube! The blue is the start of the external tube although it becomes wider and clear after the stop-cock. The bump in the bandage is the disc that is stitched into the skin.

I’ll tell you now that you won’t be able to change the bandages yourself so if you’re a single mom or your partner is away from home (military, travel etc) you’ll need to enlist someone else to help you!

How long will my tube last?

My short answer? Who knows!

When I first had mine in the doctor told me that for non-pregnant patients the tube is changed, on average, every 6-8 weeks. Pregnant patients usually have it changed more frequently to the tune of every 3-4 weeks. This seemed manageable to me, but unfortunately with the type of stones I had my changes happened a bit more frequently.

The shortest I had a tube before it blocked was 4 days and the longest was 11 days, during and post-pregnancy. Interventional Radiology and I were tight.

How will I know if the tube blocks?

Remember how I said it was nice to be able to see it? Well it is! You’ll be able to tell almost right away if your tube is having issues. As a pregnant lady you’ll be drinking a ton and if you don’t see any drainage into the bag for about 2 hours you may be having some issues.

Another sign is pain…lots of pain. Sorry to break it to you but there it is. The first initial hydro-nephrosis won’t be your last, learn to deal!

Does a block automatically mean a tube change?

The good news here is not necessarily! A few times mine would be blocked because the elastic on my skirt or pants had closed the stop-cock and I had essentially closed off the valve, causing the kidney to back up. Always check your valve first and make sure it’s oriented properly. If it is wrong, just open it up and savour the immediate relief.

The other option is to flush your tube with 10mL of sterile saline.

But how do I flush my tube?

Your care nurse or your interventional radiology team should provide you with either pre-filled sterile saline syringes or sterile syringes and a bottle of saline solution. The following list is how my husband flushed my tube for me, obviously if your dr gives you different instructions do those…this is the internet after all and you don’t know me from Adam.

To flush your tube you will need:

An alcohol wipe

Pre-filled syringes or syringe/solution

This is much easier to have someone else do as well, since if the tube is partically blocked this will be painful.

  1. Take off the cap from the stop-cock and wipe the port with the alcohol wipe.
  2. Fill syringe with solution if needed. Push plunger up to get rid of any air bubbled in the syringe.
  3. Screw the tip of the syringe into the port and switch the valve to shut down the drainage to your external tube (This allows you to flush up into the kidney…starting to see why this is painful?)
  4. Push down on the plunger with force and push about 7 ml of the solution up into your kidney.
  5. Change the valve to block the kidney and flush the other 3mL down the line to flush your external tube.
  6. Open the valve to it’s normal state.

If the tube has been blocked for a little bit the flushed urine will be hot to the touch if you hold your tube and you might see larger pieces of sediment in the line/bag than you normally would. Also it’s incredibly hard to force yourself to do things that will cause you pain, this is why its easier to have someone else flush it for you. The force you use when flushing up into the kidney hurts but its for the best.

Personal Note: I flushed my tube twice at a time, 6 times a day to try and prevent blockages but as I said before I blocked very easily and very frequently. Some patients never need to flush their tubes….lucky women…

Okay what is a tube change like?

For most people the tube change is a breeze and will only take 5-10 minutes. It is pretty similar to the inital procedure but you typically will not recieve any sedation or painkillers. I didn’t know this until I went for my first change and I was not happy.

I recommend asking your dr for a prescription for some type of painkiller and take a dose about 45 mins before your scheduled procedure. This helped make the changes more manageable but I’ll be honest with you and tell you that they’ll never be painless or fun.

For the tube change you’ll hope up on the table and lie either on your side or front like the initial insertion. They’ll prep you the same way with the drop cloth etc. I’ll tell you here that you want to wear really ratty clothes for this. If your tube is blocked you will likely end up wearing blood, urine or both, because as soon as they pull the blocked tube out all that backup looks for the fastest way out. There is a splash zone for this stuff.

If you had stitches placed to hold the tube in place they won’t actually need to be re-done every time. I had 23 tube changes in my 6 months with the tube and my stitches were only done about 5 or 6 times. They will likely just remove the disk but leave the ones in your skin there.

For the procedure itself they will check the tube by injecting the same glow-in-the-dark dye. They will then thread a flexible wire down the tube into your kidney to hold the tract open while they change the tubing. Once the wire is in they’ll yank the first tube out and shove the new tube in. Wham bam, thank you ma’am! It is actually pretty quick assuming you have a partial or soft blockage. You’ll be rebandanged and walking yourself to your car in no time.

Note: If you’re far enough along your baby will probably be trying to express his or her distaste for the procedure by kicking up a storm and or experiencing some Braxton-Hicks contractions. It’s super awesomely fun when you’re not only having someone messing with your internal organs but you’re also having contractions at the same time.

But what if I have a knot? Or a hard blockage?

Then your appointment just got a little longer and a little more painful.

For a hard blockage if they can’t get the flexible wire down the tube they’ll try a stiff wire…and put some muscle behind it… Feel free to ask for a pillow to bite down on and don’t be ashamed if a few tears escape. There’s nothing more fun than having someone repeatedly trying to ram a wire through a hard blockage into your already swollen, blocked kidney. Try to remember how much better you’ll feel when it’s cleared up!

If the block is too solid and the wire just isn’t going to work they will use a higher gauge tube and slide it over the original tube to hold the tract open when they pull it out. This hurts a little more because the tract isn’t quite that wide so there is some stretching happening there while they try to thread it over.

The procedure to change a fully blocked tube takes a bit longer and you might be there for 20-30 minutes instead of 10-20.

Now as for a knot in the tube, inside the kidney, just yikes.This is incredibly rare but if it happens, like it did for me, you’re in for a bad time. To get the tube out they need to undo the knot, because they won’t be pulling that tube out as is because it could cause some serious damage. When they had to do this for me I was on the table for 1.5 hrs and it was miserable. When they are finally able to undo the knot you’ll probably find that the tube has blocked completely so see the previous paragraphs for what happens then. As I said though, this is rare. My dr said I was the first knot he’d seen in 5 years of doing the procedure.

How can I help prevent blockages to my tube?

Well to be honest there isn’t much you can do except accept that if your tube is going to block then it’s going to block. You can’t control how the baby lies or if small pieces of sediment or stone will block the tube.

Some pieces of advice I got which might have helped (who knows!) are:

  • Strong citrus beverages like pure lemonade or grapefruit juice
  • daily flushing of the line.
  • Making sure your valve is open, don’t sleep on/smush the line when you lie down, don’t wear tight clothing that could cut off the line.
  • Ask your Interventional Radiologist to use a larger guage of tubing for your nephrostomy tube. I started with an 8 and ended with a 12 which seemed to help.

How can I hide my tube? It’s ugly! I’m pregnant and already feel gross enough!

Yes nephrostomy tubes are ugly and when I first got home with mine I cried. I didn’t want to be stared at in public! Also it was mid June in southern Ontario and I didn’t want to abandon all of my summer clothing. I wore a lot of wide legged yoga pants and long maxi dresses/skirts to hide my tube.

Honestly though, about 1month in I stopped caring what people thought and usually had it hanging out. If it made them uncomfortable too bad for them, I wasn’t going to go out of my way to make other people feel better.

Do you have to pin up your nephrostomy tube?

When you get your tube you’ll be given a large kilt pin or elastic/velcro garters that will help pin it up or hold it to your leg. Lots of people love these but I did not. I found that they actually kinked my tube and it wouldn’t drain properly. Also the one and only time I pinned my tube I got it caught on a desk and snapped that sucker in two. My 4 year old definitely learnt some new words that day…none of which can be repeated in his kindergarten classroom.

Pin it or not, I say do whatever you’re more comfortable with. My tube was usually just hanging down my side, flapping in the wind.

How do I sleep/live with my nephrostomy tube?

Being pregnant you’re probably not sleeping on your stomach anyways so this will definitely limit your sleeping abilities a little more. My tube was on my right so I found I could sleep on my back (proped up for heartburn which had nothing to do with the tubes but sucked anyways) or on my left side. The tube would hang over the right side of the bed and I was careful to not catch it on the side of the matress when I got up to pee.

The bigger danger is actually car doors, I actually got mine slammed in it more than once and lost a bag during a drive once as well. Embarassing…

Also showering sucks because you can’t get the dressing wet. We had it organized so we’d tape a Ziplock bag over it with medical tape and then change the bandages right after. Needless to say I took less showers than normal because it just became too much work.

Are there any other potential issues for nephrostomy tubes in pregnancy?

Again, I’m not a doctor, but I’m sure there are a few. I had two of the bigger ones though and I can speak a bit to those

  • Pregnancy Induced Hypertension: Any issues with your kidneys can cause your blood pressure to rise, which mine did during pregnancy. It’s actually why my little man arrived 5 weeks early. I had to be induced when my bp reached 192/115. It’s also hard to test for pre-eclampsia with a nephrostomy tube cause 9 times out of 10 you’ll already have protien in your urine, the major marker for pre-e.
  • Kidney Infections/Pylopnephritis: Having a blocked kidney, with or without stones, increases your chance for infection. Add to that the fact that someone will be getting their hands on your kidneys for tube changes it’s probably something you’ll run into. I had a recurring infection that required a PICC line and portable IV pump which gave me an IV dose of antibiotics 3 times a day. But that’s another post. With all the hospital treatments you could be exposed to different antibiotic resistant infections as well which might involve more IV drugs but usually for a shorter course of treatment.
PICC line setup for IV antibiotics through an 'at home' pump.

PICC line setup for IV antibiotics through an ‘at home’ pump.

So this sounds terrible. Are there any upsides to have a nephrostomy tube while pregnant?

Well for one you won’t have to get up to pee as much as other pregnant ladies! Half (or all if you’re unlucky enough to have two tubes) of your urine drains to a bag which gives your bladder a break.

Also you’ll likely get lots more ultrasounds to make sure your baby is okay and getting to see that little thing wiggling around reminds you why you’re doing this to yourself and why it will all be worth it in the end.

You also get lots of monitoring! Bring entertainment.

You also get lots of monitoring! Bring entertainment.

The main benefit though is that you won’t be in excrutiating pain from a blocked kidney and if you’ve ever experienced this that is enough in and of itself. The tube isn’t forever, it just helps you get through until your problem can be fixed!

But it’s not fair! Other people have such amazing pregnacies and mine sucks!

I thought it, and I’m sure you will too but it will do you absolutely no good to get down on your situation. You can go home and cry about how unfair it all is but at the end of the day you’ll still have the blocked kidney, you’ll still have the tube and you’ll still need to have it changed. You can choose to be miserable about it or you can choose to ride it out with your eye on the prize.

Make some new friends at the hospital! Poke fun at your tube/youself! Decorate the bag with sharpies! Online shop for baby stuff! Prep a baby book letting the kid now they owe you for this for the rest of their life! The time will pass a lot quicker if you try to find a silver lining.

What about labour with the nephrostomy tube?

My biggest worry was that I wouldn’t be able to have an epidural when I was in labour. I don’t feel like I need to be a hero and from my experience with my first I knew I’d be a much nicer/happier person with the drugs. I did meet with the anesthesiologist around 30 weeks to make sure it was possible with the location of the tube and it wasn’t an issue at all.

I also worried that the tube would get caught or cramp my style when I was having to push etc. But to be honest I didn’t even think about the tube when I got to that point. Contractions have a funny way of taking your mind off anything else!

Okay so when can I get the nephrostomy tube out?

This really depends on why you had it in in the first place! If it was just the baby lying on the ureter then it should come out pretty quickly after delivery, probably before you leave the hospital but again I’m no doctor and I’m sure yours will let you know the game plan.

If, like me, yours is in place due to large kidney stones, these unfortunately don’t resolve themselves after delivery. I had my surgery to remove the stones scheduled for 2.5 months after delivery so I had time to recover, complete pre-surgery testing and set up a nursing routine and bond with my new baby boy. I thought I’d be in a bigger rush to get it out but it was nice to be able to setup our routine before having yet another procedure and hospital time.

What is the final removal like?

I really can’t speak to a regular removal but I can tell you about mine that followed my stone removal surgery.

After the surgery I had both a larger nephrostomy tube and a catheter. The larger tube was to help drain any pieces of stones left in the kidney and the catheter was to help get my body used to drainig the kidney through my bladder again as opposed to my back.

Aftermath of surgery! The blue clip on the lower left attached the tubes to my gown so I wouldn't trip on or pull them. The two bags attached to the pole were for the catheter and larger nephrostomy tube.

Aftermath of surgery! The blue clip on the lower left attached the tubes to my gown so I wouldn’t trip on or pull them. The two bags attached to the pole were for the catheter and larger nephrostomy tube.

Two days after my surgery I had an x-ray to confirm the blockage was gone and then a doctor showed up at my bedside to pull out the tube. He had me take a deep breath and basically yanked. He then secured a pressure bandage to the site. They didn’t stitch it closed at which kind of freaked me out after having the site open for 6 months but to be fair it was a small-ish incision. The whole thing was pretty painless and very anti-climactic.

After 4 hrs they checked the bandage and there was about 2 inches of discharge so they kept the catheter in. 8 hrs after the removal the bandage was dry so they pulled out the catheter and told me to empty my bladder every 30 mins for the next few hours. Your kidney will empty at the point of least resistance so it’ll help seal the hole if you keep it empty!

The next morning the hole was almost closed up and the bandage was clear and I got my discharge paperwork. 6 months and I finally got to leave the hospital without any tubes!

So now what?

When you have the tube removed you will literally just cover the site with a bandaid for a few days until it closes completely and then you’ll probably have some scaring around the site.

I’ve had my tube out now since the last week of Nov 2014 and my scar is still pretty red 3.5 months later. It’s on my back though and after two kids I’m not rocking many crop tops or bikinis so it doesn’t bother me all that much.

Nephrostomy tube scar approx 3.5 months after surgery

Nephrostomy tube scar approx 3.5 months after surgery. The large dark spot was the insertion side and the small, dotted scars around it are from the various locations stitches were put in to hold the tube in place.

So there you have it.

I’ve tried to cover all of the things I can think of but I definitely am open to suggestions or more questions that you might have! Having a nephrostomy tube while pregnant is no picnic but it could always be worse! You’ll get through it because you have to and you get the ultimate reward at the end. Take your time to feel a little sorry for yourself but don’t let it take up your whole life and try to enjoy and have as normal a pregnancy as you can! You don’t want to look back with any regrets.

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32 Responses to “Nephrostomy Tubes: A Pregnant Lady’s Guide From a Mom Who’s Been There.”

  1. Ana Says:

    Hello, I found your guide, it was really challenging for you to go through all this, but mother can endure everything for the baby, so did you. My problem is little different, I had hydronephrosis at the end of my pregnancy 2 years ago and they just tried to keep me on weak analgesia, which was not working and they induced me in 37th week, baby was great, and later on, I was found to have inborn obstruction at the level of ureter attaching to kidney (PUJ obstruction). My kidney was really weak, working at 20% of capacity but they saved it by successful laparoscopic pyeloplasty. Now it works at this low capacity it filtrates well, but I would like to have another pregnancy and I am affraid because of this kidney that I would have complications. I cannot find anybody having experienced a pregnancy after pyeloplasty, so I was wondering did you meet anyone with this kind of a problem or can you refer me to some other site. Thank you, kind regards, Ana

    • That’s a big question! I was able to find an abstract for a paper on PubMed (scientific and medical research bank): Successful pregnancy following haemodialysis and pyeloplasty.
      David AS, Newling DW, Farr MJ.

      It might be worth a read or even seeing if you can contact the primary author as listed above?
      My OB told me that if (and we’re definitely not!) we consider another pregnancy I’d need to get an all-clear from my urologist FIRST! So I’d recommend a follow up with your surgeon and your OB before TTC. Again I’m not a medical professional in any capacity but it seems like a common-sense approach to make sure there aren’t any issue or you’ll be well prepared if there are.

      Good luck!!

  2. cyndalm Says:

    Hello –
    Thank you for your post, it’s very needed when in this strange situation. My situation is very similar to yours, and I was wondering, did you have your PICC line for the remainder of pregnancy?

  3. cyndalm Says:

    Hello –
    Thank you for your post, it is very needed during this strange situation! My situation is very similar to yours, and I was wondering, did you have the PICC line for the remainder for pregnancy?

    • I did! The reason being that my stones were holding an infection that could trigger pre-term labour. I was put on a high dose and then moved to a prophylactic dose from then until delivery to keep it under control. I had the PICC removed when I was discharged from the hospital after delivery, although I had to wait another 2.5 months for the nephrostomy tube to be removed. I found the PICC had a much bigger impact on my daily mobility etc than the tube did honestly!

  4. Buccaneer Says:

    Thank you for this post. I am 20 weeks with my first Bub (ivf no#8!) and was just diagnosed with hydronephrosis in the right kidney due to bubs position. The pain in unbearable and the pain meds really don’t do all that much. I’ve put up with it now for a weeks and this 24/7 lying on my left side business is depressing. I have been given the option of stent or tube and the tube sounds like the better option. I’m not really afraid of enduring some pain for procedure or changes but I am worried about being on pain meds for and extended time and what that might do to our bub if I don’t get the tube. Your post has helped me be a little more informed which will take away any anxiety going in for the procedure. Our next appointment is in 5 days so I will re-read your blog, make hubby read it and grow some giant balls of steel moving forward with this plan. Thanks again.

    • How did your appointment go? I’m so glad you found at least common ground with the post. I honestly found the whole situation very isolating but there are other mamas who are fighting right there with you.

      • Buccaneer Says:

        Hi 🙂 the appointment went well yesterday, thanks. It turns out that on Tuesday bub did a little flip and is in a breach position (is still so early though) which has given me some relief. My kidney is still dilated but they want to wait on getting the tube for a bit longer. She said I might get lucky and experience a few days relief mixed in with a few days of pain while bub is still small enough to move around. They want to wait and see how I go before doing anything further but it is still something I might have to look at down the track. Trying to stay positive!

      • Buccaneer Says:

        Also I forgot to mention that I passed your blog onto some family members who have really enjoyed reading it. One is an ambassador for kidney health Australia, and the other is a family planning nurse who was also a midwife for a long time 🙂

  5. Sadie Says:

    Oh my heck! I thought I was the only person that had this issue. It feels so good to know im not alone. I had the exact samw issues as you. Stent calcified, my kidney got an infection and the infection moved to my blood. 105° fever, 5 nights in the ER before they decided to put the Nephrostomy tube in. Absolutely the worst thing I have experienced. But I thank God every day that my now 3 year old girl is as healthy as ever. Im pregnant with my second and in 6 weeks, unless I begin to have pain before then, I go get the tube. AGAIN. But, it’s ok. They gave me pain killers but didnt let them kick in before they decided to make the very painful incision. But, I felt so much relief once the tube went it. Although I was grossed out that urine practically shot out before they got the bag on. I forgot to mention I was born with Bi-Lateral Hydronephrosis. I had surgery to fix it at 3 years old. Even when im not pregnant, I have mild hydronephrosis. But I havent needed a stent or tube(which is so nice). Anyways. I hope things go smoothly for you and that you won’t need your tube changed so many times! Good luck to you!!

  6. Ashley Says:

    Hello there, I had a tube in for about a month due to c section complications. It was removed 6 months ago but I still experience occasional pain in my kidney area. Is that something you’ve experienced? I had a renal ultrasound after 3 months and all was well but I experience anxiety anyway when I can feel it.

    • I still do as well but I do keep producing stones!! I get itchy on the site and my Dr did warn me I could get ‘phantom pains’ even after it was removed. I’m a year out now and it rarely happens these days so hang in there!!!

  7. Brandie Says:

    Hello – I had a nephrostomy tube put in when I was 16 weeks pregnant back in 2010. I was so alone and didn’t have anyone to talk to that had ever experienced this before so I’m glad to see this post so if anyone else has the unfortunate experience of dealing with this at least they will be able to read about other people experience and not feel alone. My kidney almost ruptured and I had no choice I had to get the tube, my hydronephrosis was classified as significant and my radiologist said it was really bad. I had multiple infections and multiple hospital stays during my pregnancy. I was and still am worried about all the radiation I had to have because of multiple tube changes.

    • I hear you! I had my tube changed 23 times before it was finally removed and at 2 xrays a change plus the various other ones to ‘check on things’ it sure does add up. I did ask about this at the time though and my drs were great at explaining that for it to create long term consequences with anything out of the ordinary you’d need to have hundreds! Definitely felt like it at the time but in the end it was definitely worth it. I was more worried about long term scaring within the kidney and ureter but seemed to have escaped that as well. It was a long 6 months but now that I’m about a year separated from it it’s easier to find the silver lining 🙂

  8. Laura Says:

    Up at midnight looking for experiences with the tube. Few and far between. I’m 28 weeks and on my 5th internal stent (first was at 20 weeks). The baby or my uterus just somehow blocks the ureter. No stones. With 12 weeks left I worry about all the pain the stents are causing. Some days I can’t get out of bed and my bladder constantly feels like I have to go. I asked my OB and urologist about the tube (even though it freaks me out) and both have advised it will probably be more painful than the stent. So…not sure what to do. But always nice to see I’m not the only one.

    • Poor you!! I can imagine if your baby is lying on your ureter that would make the stent a million times more painful!! They aren’t exactly a walk in the park when you’re not pregnant!! Honestly I’ve had both and my tube was less painful than my internal stents…when it wasn’t blocked that is. I’m surprised they haven’t recommended it since it would allow your kidneys to drain bypassing the area that’s being smushed!! Only 12 more weeks though and you’ll be holding your previous babe who will make it all seem so worth it!! Praying for you!!

  9. Amanda Says:

    I’m only going to be 8 weeks when I have this procedure done. Im told I’ll have to have it the duration of the pregnancy due to a 15mm stone in my left kidney. I’m working full-time and also a mother of a 9 month old. I’m going through all the emotions right now and most of all wondering how I’m supposed to go on with life. Being pregnant should be joyous and now I feel like it’s going to be tortue and I know that’s a horrible thing to say. But I am so scared to go back to work with this nasty pee bag. I work with hundreds of people. Am I going to be able to sit and stand and walk through out the day ? I’m so nervous.

    • Oh no!! I’m so sorry but honestly you’ll feel so much better and it won’t be as bad as you think. I was already on a medical leave (paid) from work when I had my tube inserted so I never had to deal with ‘real’ day to day life. Is there anyway you can be supported for a leave? I got my tube caught on EVERYTHING so I can’t imagine having to navigate a workplace. I rarely went out (not because of how it looked….I didn’t care at that point :P) but because I was scared of it being pulled or blocked. It won’t be the easiest pregnancy that’s for sure but you can do it!! Totally worth it in the end I promise.

  10. Reagan Says:

    I so had tube & 2 PICC lines my first pregnancy due to infections that nobody had heard of so I agree to all of this! I was 18-19, newlyweds & had just moved away from both of our families. It took them 3 months of week long hospital stays, many ER visits, pain killers & testing to figure out what was wrong because my stone kept moving & hiding behind the baby. I had to get it changed every 5-6 days because of how quickly it would get clogged or I would have to stay in the hospital again due to a worse infection or another infection. I had 6 doctors visiting me & the infectious desease doctor was horrible for a pregnant person!!! I was so scared & felt so alone! I wish I would have found this post back then!!! However 2 years later & we were brave enough to get pregnant again. I’m wondering if you know the odds of having to go through all of this again this time around. I’m prone to kidney stones so I’m worried. Every time I feel the slightest pain, I have a mini panic attack! I know I’m just being crazy but I’m so worried that my 2 1/2 year old will have to go live with her aunt or grandparents for a while because I’ll be unable to care for her….

    • I’m not sure what the chance of a recurrance is honestly! With my first I had stones but they didn’t cause issues – I passed them with no trouble about a week after he was born. My OB did tell me though that if we were to get pregnant again (which we’re definitely not doing…two is enough for us!) that I should see my urologist FIRST to make sure my kidneys are empty…to at least prolong when I’d need to have a tube inserted. Wishing a healthy pregnancy though and hoping the previous one was a one time thing!!

  11. Amber Shepherd Says:

    I have a nerphrosomy. I was 17 weeks when the issues with my kidney started. Upon writing this i am 24 weeks(2/23/17). Im looking at having the tube until august. Im due in june. But im also looking at delivering my son “as early as possible” according to my ob. My tube is painful constantly. On the pain scale it ranges from a 2 to a 8. I found a good way to clip it to myself and to things such as the sheets on the bed is with a small binder clip from the office supplies. I use the strechy band from the legbag. Trim it to desired lenth button it and then use the clip. Its nice when i forget its not attached to me and it slips off if i walk to far. But i have never had it slip off when not wanted to. As a bag cover i use one of the bags with the velcro flap closure that cheap pillowcases come in from Walmart. The leg bag fits in them great!

  12. Patti Says:

    this was so helpful and informative Thank you!

  13. KO Says:

    Hello! I was so glad to find this blog post! I was recently hospitalized for 5 days with hydronephrosis from a 1.2cm kidney stone. I had a nephrostomy tube placed in my right kidney and so far my experience has been similar to yours. While I have had the tube in for less than a week, I am already miserable. I have 12 more weeks until baby girl is scheduled to arrive. My question for you is: were you working during this time? When the tube was put in and I started reading about the potential complications I was concerned that I would be put on bed rest. Now that I am back at work, I’m wishing I was. I have my 28 week appointment with my OB this week. I’m wondering if she would recommend short-term disability. Any thoughts you have based on your experience would be greatly appreciated!

    • I stopped working as soon as they found stones at 9 weeks! I would 100% be asking your OB or primary care doctor to support you for short term disability. Nephrostomy tubes suck and I can’t imagine having to try and be productive with one strapped to your leg!!

    • jeni Says:

      Looks like we are in a very similar boat! I’m 26 weeks and going to the doctor today to see if I need a nephrostomy tube. When the tube was placed was your pain relieved? I’m in so much pain, I’m miserable

      • Yes!! As annoying as the tube was it definitely relieved at least 75% of the pain!! The pain is from the pressure of the buildup in the kidney – give it a way to get out? You’ll feel a thousand times better!

    • Hannah Says:

      Thankfully my boss is understanding because I work for a small business but I cannot imagine working and having this tube. I would definitely not hesitate to stop working just so you can focus on yourself, your health, and the health of your baby. I haven’t been working four weeks and though I feel guilty for not working, I think it has kept me from having complications as I’ve read so many women who have! Good luck on the rest of your journey! How are you overall holding up so far? Not going to lie I’ve been a hot mess with a month left to go!

  14. jeni Says:

    THANK YOU! THANK YOU! THANK YOU!!!! I’m facing a nephrostomy tube and couldn’t find anything, until I stumbled upon this post. Thanks for much for sharing your story and answering every question I couldn’t find. Makes me feel less alone.

  15. Hannah Says:

    This was super helpful for me as I’ve had my tube for a month now and it sent me into a tail spin. I like to plan and I got hit with a one two punch which was unplanned pregnancy and seven months in, what they assumed were kidney stones leading to this tube. It seems like your doctors were able to definitely say you had the blockage while my situation they saw stones in the ultrasound but never found a blockage. They sent me home with low dose pain medicine my first ER visit and then less than 24 hours later I came back but in an ambulance because of unbearable pain and profuse vomitting.
    I know it has been a few years but I did have a couple questions. My tube placement took much longer than usual and was the most painful experience I ever had since they only localized the area. I have my tube changed in a couple weeks and I can’t find anywhere the explanation of this change. I’m TERRIFIED it will be messed up and they have to do my procedure all over again. I also can’t really find what a tube change is or what to expect. My doctor said it’s not the same as the original placement and only takes 15 mins or so? I tend to over complicate things but I just can’t wrap my brain around that.
    Second, if they haven’t found the stone blocking, I have no desire to leave the hospital with baby AND this bag. My doctor plans to do a CT immediately after she’s born so they can see what really is going on. I guess I’m confused how they can see not much with an ultrasound but will a CT really be more helpful? And if I go home with the tube, is it hard to care for baby when you’re still taking sponge baths and taking care of the tube?
    This whole experience has lead me to consider permenant birth control once my package comes just because I really don’t want to go through it again. You seem like a positive person and you explain your experience with useful details, how did you deal with it emotional? I’m just thinking I’m a huge drama queen about my experience and truth be told I’m still scared shitless not to mention my husband will be gone for the military in a week, missing the rest of my experience! Overall not feeling sure or positive and preferable am again terrified to have this tube a second longer than needed!!


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