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Monday, June 22, 2009

Already understanding the fear of a parent...

As many of you know, about 3-4 weeks before Memorial Day I started having nagging kidney pain. The pain got progessively worse and after a trip to the ER, I was diagnosed with a urinary tract infection, was given antibiotics, and was then sent home. I had a follow up appointment with my high risk doctor, and since the pain was still there, there seemed to be a little bacteria left in my urine, and my amniotic fluid was kind of low he felt I needed to spend a couple of days in the hospital to get IV fluids and antibiotics.

I spent six days in the hospital and underwent a gamut of tests when the pain still would not subside. I had an ultrasound, which showed fluid on my kidney. This is the first time I was introduced to what has now become my least favorite word in the English language: hydronephrosis. I was assured that this was not serious and was very common in pregnant women, because the baby and/or the uterus itself can push on the ureters and cause fluid to back up into the kidney. Eventually they did urinalysis, which showed that the infection had cleared up. This led to an IVP, which showed moderate hydronephrosis, but no blockage.

I met with a urologist on Memorial Day. I will say this. The concept that you are who you hang around has never rung more true than during my recent encounters with urologists. Apparently, if you spend enough time around become one.

But I digress.

The urologist told me that the only thing they could really do for my pain was to surgically place a stent in my urinary tract. He cautioned however that the stent could cause more pain the hydronephrosis. With this information and the advice of my high risk doctor, I decided to forego the surgery and just try to tough the pain out.

A few more weeks went by and the pain itself didn't worsen much, but the toll that the constant nature of the pain was starting to take a toll on me mentally. My primary doctor, whom I love and trust with my life, felt that the doctors were not being as forthcoming with all the information as they could be. She felt that without intervention 12 weeks to my due date was too long to wait and I was risking losing my kidney or going into premature labor from infection or the pain. I told her I had a standing appointment with a different urologist than jerkwad from the hospital, and I would discuss getting the stent.

I did not make it to that appointment.

This past Monday, the pain was following it's typical pattern. Virtually non-existent that morning, right after I woke up. Started nagging around 11:00 am. Became more intense in the afternoon. But by dinner time, I just couldn't take it anymore. My mom took me to the ER and they gave me dealudin (sp??), which immediately relieved my pain. All of my doctors were on vacation: my primary doc, my high risk doc, and the urologist I was supposed to be seeing in a couple of weeks. So I got assigned to the on-call OB, who was lovely and felt that we had officially reached stent time. She got a urology consult and the urologist seemed nice enough and said they would do the stent surgery the next day.

I was on cloud nine. Finally, the hope of some relief from the constant pain. I spent the night and the next day in triage (too many pregnant ladies to get a real room). They came and got me around 4:00 and took me to pre-op. I layed in pre-op or a couple of hours, because they "couldn't find" my urologist. Everyone was there: the anesthesiologist, the surgical nurses, the labor and delivery urologist. How does that happen?

The urologist finally decided to grace us all with his presence. He seemed alarmingly hyper to me and practically forced me to say I wanted to be discharged immediately after the surgery. I kind of muttered, "You are the doctor, if you think I am well enough to discharge me afterwards then go ahead."

Cue the anesthetic black out.

As soon as I came to, I knew something was wrong. First of all, what woke me up was myself vomiting. I told them beforehand to load me up with enough anti-nausea medicine to kill a cow, but it still wasn't enough. When I finally stopped vomiting, I couldn't I started screaming I couldn't breath. The post-op folks sprung into action and started giving me oxygen and trying to get me to calm down and tell them my name and my birthday and what year it was....these questions become terrifying when you start to realize that they are being asked to keep you concious.

When I finally regained some control of my breathing, it hit me. I am in horrifying pain. And it's not my kidney. It's my bladder.

The only way I can describe it is that you feel like you have been holding your urine for weeks and have been unable to empty your bladder. I started having violent bladder spasms and a complete psychological breakdown. All my stoicism, all my pep talks melted away and I just started bawling. I bawled loud and proud and didn't care who heard me.

I later found out that the urologist had gone out and had a nice long talk with my parents and my husband. He answered all their questions, told them I'd be a little sore and might feel like I needed to urinate for a while, but that everything went great. He then sped off in his BMW, presumably to return to whatever activity made him forget about my surgery in the first place.

I never even got to talk to him.

Obviously, even though the urologist had signed off on my discharge the OB doc was not going to let me go home in the state I was in. They were trying everything they could to stop the spasms and keep me from going into the labor. I was in that much pain. It was a night of bedpans, morphine pumps, antispasm shots, antispasm pills, heating pads...on and on.

By the next day, I still had the urgency, but I had calmed down. A morphine pump will do that to you. I was trying to tough out the constant feeling of having to urinate, but when they discharged me that evening, I started my bawl fest again, because I knew that I still wasn't right.

And worst of all...

My kidney still hurt.

I gave it three days.

Some might say I should have toughed it out longer and given the stent more time to work. But when I called the urology office to ask questions like 1) is this normal? 2) how long should I expect to feel like this? 3) is there anything else I can take?.... the urologist was too busy to call me back. Instead, he had his receptionist call me back to say he had called me in some ditropan. That's it. That's all I got.

I tried the ditropan. It didn't work. The OB who saw me in the hospital called me in some spasm medicine that seemed to help the night I spent in the hospital. It didn't work. I was chugging water by the gallons. It wasn't helping.

So Friday night I was done. I called the urologist and said I wanted the stent out. He was extremely annoyed and rude, but I didn't care. I wanted it out. He said he couldn't take it out, because he wasn't in the office. I told him I would go the ER and get a different urologist then. He said I "didn't need another urologist" and to go the ER and meet one of his residents over there and he would take it out. Three hours later, I was stent free, but still spasming. I spent the night at home vomiting and scared and the weekend slowly recovering.

It is now Monday. And I am waiting for the urologist to return my call. I'd venture to say I can expect a call either at 5:00 when his office closes or later this week, based on his previous interest in treating me. I am still experiencing a little bladder discomfort, but everyday it gets a little better. The kidney pain, on the other hand, is back in full force.

Which brings me to my laundry list of fears.

1) I am afraid they will take my baby early. I've heard everything bantered around from 32 weeks to 38 weeks, but no one saying 40 weeks.

2) I am afraid I will lose my kidney if I leave the hydronephrosis untreated.

3) I am afraid of the stent alternative - a tube in my back and carrying my pee around with me everywhere in a bag.

Here is the breakdown of my medical professionals opinion:

Primary Care OB - Wanted me to get the stent and was concerned about me losing my kidney. To date, however, she has never seen an ultrasound of my kidney. She also has no idea that I had the stent surgery and subsequent stent removal.

High Risk OB - Did not want me to get the stent surgery until he saw my follow up kidney ultrasound at 26 weeks preggo. Then he referred me to a urologist, who couldn't see me for four weeks, because he would be on vacation. (so not a lot of urgency)

First Urologist I saw on Memorial Day - Didn't seem to think stent was all that necessary, except to help with the pain. In fact, he pretty much talked me out of getting the stent.

Second Urologist I saw who performed my stent surgery - Also never really said the stent surgery was necessary, beyond pain management. When we had our spat on the phone Friday night, he actually said, "I put the stent in because that is what the ER OB and your High Risk OB wanted me to do."

Family friend The Nephrologist - said I am well on my way to losing my kidney. He also has never seen an ultrasound of my kidney though, and is just going by my story thus far.

So, I am in a sea of confusion. I don't know which way is up, if I did that right thing getting the stent, if I did the right thing getting the stent out, what I should do now, how much urgency I should be putting on follow up appointments, am I weeks from losing my kidney?, days?, is "losing my kidney" not even really a fear of the urologists and just a fear of my baby doctors?.......

But my prevailing fear...what is going to happen to little Hannah Jane? Have I hurt her putting her through these surgeries and all the accompanying meds? What about the pain killers and morphine? Have I done irreversible damage to her? Is she scared? Is she in pain too?

And what if they really want to take her early? Will the fact that I couldn't suck it up and deal with the pain of the stent mean that my baby girl could have all the issues of a premie? breathing problems? mental disabilities? Could I live with myself?

Here's what I need to know:

Could I really lose my kidney?
If so, how long before I need to intervene?
Would conservative treatments like bed rest and staying on my left side be effective?
What do I have to do to keep my baby inside where she is safe and kicking for the next ten weeks?

Please keep Hannah Jane in your thoughts and prayers. I am turning this one over to the big guy. I am done. I am out of fight. I surrender.

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