Confessions of a Starbucks addict

Being sick totally and completely sucks. :(

A little background since I just started writing here... Last year, in July,Troy took me to the St. Francis ER (in Federal Way) because I was feeling like I had a kidney stone. They gave me the good pain meds, did a few scans, and told me that though I had a rather large stone in my left kidney that wasn't the pain I was feeling. They said that stone wasn't going anywhere, it was caught in a "corner" of my kidney (yes, I've been told that numerous times over the course of a few years), but that I had what looked like a large vericose vein on my left ovary and that was causing the pain. I should follow up with my OB/Gyn and they released me.

A few days later I follow up with my OB/Gyn and she thinks that I probably don't have the pain from the varicose vein but that it could be from my IUD. So, she decides that I should go through exploratory surgery and at the same time have the IUD removed, because most likely it is what's giving me the problematic pain. Surgery gets scheduled for September.

At the end of July we pack up the kids and head down to California to visit family. On the way down I was feeling kind of nauseas but didn't do too badly. After being there for a few days I finally told Troy that I really was in pain again, so he took me to the Los Gatos Community Hospital, near his parents' house. The ER doc was a jerk, listened to my story (told him about the possible kidney stone/vericose vein and that I had surgery scheduled for the vein), and told me that he didn't think anything was wrong. They gave me pain meds, sent me in for some scans, then the ER doc decided for some reason that there had to be something else wrong so he admitted me. While being admitted I saw a few other docs, lots of nurses, and lots of phlebotomists. No one could see anything wrong, so sometime in the middle of the night (no really it was more like 11 PM, I think), they called in a renal specialist. He came in and listened to my story and then asked me if the "stuck" kidney stone had ever been further evaluated. I said no, but that everyone tells me it's probably been there since I was a baby and not to worry about it. He asked me where I'd been evaluated for kidney stones before and I let him know what hospitals I'd been to here in WA. He then called up the two that I've been seen at and had my CT films emailed. He had a radiologist print them up on films and then lined them all up in the nurses station. He then traced how that stone (approximately 3.2 cm or 1.25 inches in diameter) kept bouncing around in my kidney. Yes, it was moving, just moving slowly and not ever going to come out on its own. He scheduled me for a lithotripsy the next day.

Lithotripsy is a procedure where they use ultrasonic waves, through a water bed, into your back where it breaks up the stone. The part I didn't really like about it was that he wouldn't then go in and get all the pieces, he'd leave a stent in and they'd come out over the course of a couple of days. Ouch! I'm so glad they have really nice pain meds at the hospital! I was released a couple days later and went to recuperate at my parents' house. Let me just tell you that peeing with a stent in is no fun at all! Luckily I only had it in for a few more days and then went back to the renal doc's office and he removed it. Losing that tube was the best part of the vacation, let me tell you! On to home...

Time went on and it was the day of my exploratory surgery in September. The week before I went and did all of the normal pre-op workups and one weird thing came up. I had a slow R wave progression on the ECG. Not knowing what that meant, I went home and looked it up online. It looks like it's something that happens either after you've had a heart attack, or it was bad lead placement. We went with bad lead placement... Had the surgery, everything was fine. The vein had gone back to being no problem at all and my IUD was removed. I don't remember exactly what she said but it may have imbedded a little bit in my uterus, so it was good that it was removed.

A few days post-op I starting having this horrible pain right under my lower left rib cage. I let it go for about a week and then went in to see a doctor who is in the same practice, but not the same office, as my own primary doctor. She sent me for an ultrasound and said there was probably nothing wrong.

My own doctor got the report a few days later and had me go get an MRI soon thereafter. I had an enlarged spleen and an enlarged liver, as well as a splenic infarct and splenic vein thrombosis. I had what?!?!?! She put me on Lovenox (an injectable blood thinner) as well as warfarin (rat poison, also known as Coumadin). I was then told to come in weekly for INR tests, those are to find out your clotting time while on the blood thinners. She also drew labs for all kinds of clotting disorders and diseases. All of those came back normal, so she then sent me to the UW to see a surgeon. The surgeon told me that what had happened is something very common after laparoscopic surgery and that after 6-12 months on the blood thinners it would be resolved. I would still have the pain, but after it was resolved the pain would slowly go away. So, I got to add percocet to my pill regimen.

Fast forward to January. Just after the beginning of the year I went to go down the stairs in my house and had the weirdest, all-of-a-sudden, shortness of breath. What? From going down the stairs? Bizarre. Going back up the stairs was worse. Going from the couch to the bathroom or kitchen was worse. I call my primary doctor all freaked out. She sends me for more bloodwork, but has no idea what could be wrong. All the bloodwork comes back relatively normal, but my Sed Rate and WBCs are elevated slightly. She chalks it up to infection and puts me on Cipro.

I finish the Cipro, am still having problems breathing. It's only happening while I'm walking or doing anything strenuous, and my doctor just thinks that it's the infection. She takes some more blood and refers me to a pulmonologist. The pulmonologist thinks it's adult onset asthma. She sets me up for a PFT (pulmonary function test) and gives me asthma meds. Says to come back in a month. I do the PFT and it shows some restriction, a low reserve volume, and an especially low diffusion capacity (this is what transfers the CO2 and O2 between the lungs). Dr. Pulmo decides that's really asthma and says to continue with the asthma meds. I call a week later and let her know the asthma meds aren't working. She says continue on them and come in for the normally scheduled appointment.

I go back in for the normally scheduled appointment and let her know that the asthma meds aren't helping in the least. She decides that I need to do a bunch of other tests, but our insurance changes before I can get them done. Unfortunately, she doesn't accept our new insurance nor do most specialists in WA, apparently.

I email my primary doc and let her know that I need a new referral to a new pulmonologist because of the insurance change. Her referral coordinator calls me back and says that she can't find any pulmo's who will take my insurance, so check with the insurance company and find one and they'll refer me there. I do just that, call them back, they send over the referral, the new pulmo's office needs all of my records before they'll make and appointment. UGH!

I finally get an appointment with Dr. Pulmo2 and he thinks it's one of two things...by this time it's July of this year. He thinks it's really asthma and we haven't found the right meds, or it could *maybe* be pulmonary histio, since PJ has LCHistio. He does a walk test and notes that I desaturate to the low 70s while just walking, and thinks it's a fluke. Whatever. He sends me for another PFT with a methacholine challenge. The methacholine challenge will definitively tell if I have asthma. He also sends me for another two CTs and an echocardiogram (by this time I've had one other CT, two chest x-rays, and a stress echocardiogram). The new echo doesn't tell him anything new, nor do the CTs, except they both show a small 3mm nodule in the middle right lobe. The nodule is chalked up to be scar tissue from a serious bout of pneumonia I had a few years ago.

The methacholine challenge proves that I don't have asthma. I swear, no one listens to me! I've been saying that for months! I go back in to see him, he says I need to do an exercise PFT but that he doesn't have that equipment there, I'll need to be referred to the UWMC in Seattle.

I get referred to UW Pulmonology in Seattle by my primary doc, since she's a part of their network. The people in Seattle say that they can't see me until the end of October (this was the middle of September when I called). I email my primary and let her know that I'm disappointed that no one is taking me seriously, and that an "urgent" appointment in 6 weeks is ridiculous. She concurs, and calls the Dr. Pulmo3. He can get me in the following week. Funny how Dr. Pulmo3, who didn't have anything available until the end of Oct., suddenly had availability the next week!

I hate driving in Seattle, so I decided to take the bus up there. That was fun, and I'll be doing it again when I have to go back. It was relaxing and took me straight there. :) It was also cheaper than paying for parking. I also got to meet up with my friend Erika, who works at the UW. We had lunch in the cafeteria and chatted about a lot of stuff...then she got me lost and I was nearly late for my appointment! That was okay...they made me wait for an hour anyway. Next time I go, I'm hoping to meet her for coffee or lunch again....

Anyhow, first the Fellow comes in. The Fellow is an MD who is getting extra training after their internship and residency. She quizzes me about my history, all the tests I've had done, etc. She has me do a 6 minute walk test. Then I get to see Dr. Pulmo3. He has me do a bunch of neurological tests. Turns out he was thinking myasthenia gravis. Blood came back for that test as normal... Yet another diagnosis down the drain. I was actually hoping for that because it's an easy fix...take some meds, get a few IVIg treatments. No problem! Oh well. He also schedules me for *another* echo and an exercise PFT.

I go to the echo. The point of this echo was that they were supposed to get an estimate of my pulmonary pressures. I emailed my primary doc and she says that the echo looked good, but unfortunately they didn't get a good look at my pulmonary pressures. UGH! ARE YOU FREAKING KIDDING ME?!?!?!?!!? I email her back and ask if she can tell me what the pressures were, if in the report, and could she either rule in or out the diagnosis of pulmonary hypertension. She finally emailed me back today and told me that she can't do either with her interpretation of the report and that I should talk to Dr. Pulmo3 and see what he says. Unfortunately, Dr. Pulmo3 won't give me his email address, and the winner of the Bitch of the Year Awards is the one who answers his phones. I'd rather not talk to Ms. Bitch of the Year, thank you!

So here I am. I wait. I get to stew for nearly two weeks until I see Dr. Pulmo3 again. I have my exercise PFT on Nov. 1 and see him again on Nov. 2. I still can't breathe when walking, I'm starting to have a problem breathing when I'm lying on my back and sometimes while lying on my right side. I feel like I'm getting worse. I swear, Mystery Diagnosis better be ready for me when I do get a diagnosis. My house is a mess, the children talk back at me when I ask them to help, well one child in particular. I went in the kitchen a couple weeks ago and decided I'd be nice and clean the kitchen, it was also a test of my tolerance for activity...I barely made it through unloading the dishes from the dishwasher. I continued on. I don't think I've sweated so much in my life, ever. Breathing is a lot of work when you're having problems with doing it. I no longer take air for granted.

I'm so sick of being sick.