Tuesday, April 24, 2012

More Exciting Times

Yesterday, I had appointments with Endo Doc and the Urogyn. Endo went fine, she had a PA with her who gave me some encouragement, which was great! It was a quick appointment. She thinks that with my diagnosis of POTS, it's possible that I didn't actually have adrenal insufficiency to begin with... but I am definitely steroid dependent now. It's super complicated to figure out which problem is causing the symptoms, but basically, I know my body and will try to taper my steroids whenever I feel ready.

Then I went to see the Urogyn. I waited for forever to see her, which is unusual. Turns out they were waiting for the ultrasound people to write my report. She came in and asked if I could come back another day. I was already late to where I was supposed to be next, so I declined the opportunity to make the long drive three times in as many week days and said I'd wait. I told her what the radiologist had told me: that there was fluid in my pelvis, but it was just "physiologic fluid" (normal).

She said, "So, what can I do for you?" I was sort of surprised. She said that she wasn't sure I'd ever had an infection, especially since now two tests (MRI and sonogram) have shown no abscesses. I was so confused. Why did I just take a month of hard-core antibiotics?? She said we'd just see how I did without the antibiotics. Or I could go to the hospital and get IV antibiotics. What did I want? I was so confused. She said, "I know you're frustrated; we all are. But I just don't know what to do since I can't treat something that's not there."

She asked if she could do an exam and changed her tune very quickly. She could see all the drainage and was very concerned with what she saw and kept repeating that it was not normal, shouldn't be happening, is fistulizing with an abscess somewhere... She said I had two choices: 1. another Exam Under Anesthesia, like what I did with Dr. Saturday last month, or 2. a small laparoscopic exploratory surgery to try to find the abscess and fistula, clean out infection, and fix the fistula. She said I could think about it and call her.

Then the nurse knocked, saying that the ultrasound was ready. Well... apparently they did find something. A loculated fluid collection (a.k.a. an abscess) in my pelvis in the exact spot where I'm hurting and where my previous abscesses were. So the doctor told me that my choice was now: do I want her or Dr. Saturday to do my surgery? We agreed that Dr. Saturday knows my history and anatomy best, so he would be the best choice.

I called Dr. Saturday... and we discussed several possibilities. He said, "We really want to avoid opening you up again. It would be a big mess. You know what a disaster that would be."

I do, Dr. Saturday, I do.

So... the plan (as of today) is for me to go to Interventional Radiology for a CT-guided drainage of the abscess. I've had this done to the abscess before, back in 2010. It is very unpleasant, but it is much, much easier and preferable to having big surgery. Basically they stick a HUGE needle in through your hip all the way to your pelvis. They go very slowly, stopping about once an inch to take a CT and see how they're doing. There's a lot of "pressure" involved.

Why do I keep getting these abscesses? Why can't they get rid of them? We don't know. No idea. The doctors don't know. No idea. I'm special. ;) My body WOULD come up with a way to have this many abscesses.

My sister and I decided to name it "The Worm That Dieth Not."

I am, of course, less than excited to have ANOTHER procedure, but the Lord has given me great peace and calm about this. I don't even allow my emotions to get involved with this stuff anymore until I know for sure what the doctors plan to do - can't allow the roller coaster ride that "No infection" to "EUA" to "Exploratory laparoscopic surgery" to "abscess surgery" to "CT Guided drainage" creates.

I just keep thinking about God - who is eternal and outside of all of this. None of this was a surprise to Him. He made my body and He knows it better than my doctors do. He brought Isaiah 26:3-4 to mind: "You keep him in perfect peace, whose mind is stayed on you, because he trusts you. Trust in the Lord forever. For the Lord God is an everlasting rock." As I keep my mind and trust fixed on Christ, He promises to keep me in perfect peace. I can trust in Him because He is God forever - He was here before time, and He'll be here after time. This means that His love for me is forever, His goodness to me is forever, His mercy to me is forever... I can certainly trust my future to Him.

Hannah ;)

Friday, April 20, 2012

Antibiotics and Dr. Saturday and Ultrasounds, Oh My!

This week I’ve continued on the antibiotics… 14 antibiotic pills per day! That’s hard to swallow in more ways than one. ;) The antibiotics are very powerful and have been wrecking havoc on my poor tummy. I have been needing up to 8 Lomotil (antidiarrheal) pills per day just to prevent bad dehydration and to allow me to absorb my meds. The usual things to slow me down, like yogurt, rice and other white carbs, aren’t helping. I added in bananas and applesauce, and it worked great - allowed me to actually stop taking Lomotil – but only for 2 days. For the last few days, despite both the foods and the meds, everything is going straight through me. I am trying very hard to stay on top of my fluids. I will be so glad when I finish the course on Monday night! Ostomates/J pouchers: any tips or tricks that I’m not thinking of?

This week has been really tough as far as POTS symptoms are concerned – I’ve felt especially yucky each morning. I feel so weak and shaky and my heart has been racing. I’m drinking at least 3 liters daily and eating lots of salt, but I simply cannot stay hydrated because of the antibiotics. I know that the dehydration makes my symptoms worse. Ironically, the neurologist asked me to try to lay off the antidiarrhea med, because IT can elevate the heart rate! So my choices are: don’t take Lomotil and get really dehydrated, making my POTS worse, or take the Lomotil to try to stay hydrated and make my POTS worse. On the days when I was off Lomotil, I still had pretty bad POTS symptoms, though, so I think it’s probably best to take it!

My fevers finally stopped and my pain started to go down on Monday, which is great! I am still having the drainage, though, so we know the abscess is still present. I saw Dr. Saturday on Wednesday, and he was stumped. We can’t see the abscess on MRI and he couldn’t see where the drainage was coming from when I was in the OR. I’m feeling better than I was, which is good, but he would like to be able to identify (and fix) the source of this issue!

He wanted to talk to my Urogyn, but he was running behind and wanted to go see another patient. So he asked me if I would call, posing as his office staff and get her on the line so they could confer. Never been asked by a doctor to do THAT before, but I understood his reasoning: if a patient calls a doctor’s office, there is NO WAY they will actually get to speak with the doctor.

So I called, and didn’t have to lie at all. One of the options on the automated menu was: “If you are calling from a physician’s office, please press 1.” Well, I WAS calling while sitting in his office… so I pressed 1, and then told the nurse that Dr. Saturday wanted to speak with the Urogyn regarding a mutual patient. I just didn’t mention that the mutual patient was… myself. Unfortunately, she wasn’t seeing patients that day, but they gave me her academic office number and they paged her.

She called me back after she talked to Dr. Saturday. She said that if an abscess is going to respond to antibiotics, it should do so after two weeks. I’ve been on multiple, high-powered antibiotics for nearly a month without resolution of the drainage. She recommended an ultrasound of my pelvis to see if they could find the abscess. The ultrasound is not as good a test as an MRI, but it would show if the infection is in my uterus. If so, they could probably drain it with a very small surgical procedure that wouldn’t even involve an incision. She said she really hopes this would be the case, since no one is anxious to take me back to the OR for a big surgery after all I’ve been through. I couldn’t agree more.

The nurse called me last night around 6. “Hi, the doctor asked me to call you and give you the number for the imaging location. Did you call to schedule your ultrasound yet?” This seemed a bit nonsensical to me: the doctor asked her to call and give me the number. This meant that I didn’t have the number. So… how could I possibly have called and scheduled the test? Anyways, I’m sure she was just tired – it was 6:00 and she was still at work! No fun! I called first thing today to schedule it, and they got me in today.

I always forget how “interesting” it is when I get ultrasounds. First, the tech does the test. Then they say, “Um, let me get my supervisor to come take a look.” Then the supervisor comes in and repeats the scan. Then says, “Let me go talk to the radiologist.” I end up telling my life story quite a few times and have a lot of ultrasound goo everywhere by the time everyone is done scanning me!

They thought they saw an abscess in my pelvis at first, but it turned out to be nothing (confirmed by the supervisor and the radiologist). The radiologist walked me out and said she was sorry; this test didn’t really help at all with finding the abscess, and she wasn’t really sure what other test to suggest. We’ll see what the Urogyn thinks when I see her on Monday! My hope and prayer is that the abscess and drainage will completely resolve and that I won’t need any more antibiotics or tests or surgeries… EVER. ;) But no matter what ends up happening, I hope and pray that I reflect the attitude of Christ – one that is willing to say, “Not my will, but Yours.” 

Hannah ;)

Thursday, April 12, 2012

Another Day, Another Diagnosis

In my health journey, I've seen all kinds of doctors and specialists. Today, I actually saw a kind of doctor I had never seen before: a neurologist. This was the appointment to see if my shaking and heart racing and  fatigue issues are related to a neurological condition.

The doctor was able to determine, after asking a bunch of questions and doing some simple tests, that I do indeed have a condition called Postural Orthostatic Tachycardia Syndrome (POTS). Basically, it means that my heart rate increases whenever I stand up. It is a type of dysautonomia, a dysregulation of the autonomic nervous system. POTS explains SOO many of the random symptoms I experience: my shakiness, heart racing, fatigue, extreme salt cravings, "fuzzy" thinking, dizziness, dumping syndrome, heat intolerance, fluid balance issues, dramatic improvement of symptoms when I get IV fluids...

He said that I fit the picture to a T of the typical POTS patient: someone who used to be very physically fit and strong, got sick with a chronic illness, and then developed this array of symptoms. He said that my heart has changed as my size changed - I have lost a LOT of muscle - and my nervous system has gotten messed up so that it's no longer is able to regulate my body properly. My heart has gotten smaller as I've lost muscle, and it is pumping very hard and fast when it's not necessary.

I'm already on several of the meds that they use to treat POTS (steroids), but his other recommendations were: drink 3 liters of fluid per day (!!!) and eat 3 tablespoons of salt per day (!!!!!!!!). That's a LOT of salt and water (he told me to intake 10 grams of salt daily - he said that this was 3 tablespoons. Upon Googling, I found it's more like one tablespoon - still a lot, but much more reasonable!). I'm also supposed to elevate the head of my bed, which is supposed to help retrain my heart to adapt to upright posture.

The doctor is involved with a research project that is studying the affects of exercise in POTS patients, and I may be joining this study (I also donated a tube of my blood today for research on people with POTS!). The exercise is mainly seated weight training with some seated aerobic activity (recumbent bicycle, rowing machine). The weight training is supposed to help the heart remember how to pump more efficiently while encouraging the extremities to return the blood to the heart. He told me that exercise is very beneficial for POTS patients. It's not often that I go to the doctor and am given the opportunity to do something to make myself feel better... so I jumped all over this opportunity. My heart racing symptoms have not been very prominent recently (although they were today, which was good - he got to see the symptoms I have), but I would like to keep them at bay, so I will gladly guzzle water and row on a rowing machine if it helps!

Next, I went to the Rheumatologist. She expressed concern at the amount of narcotics I'm on (I'm concerned, too!). Mainly she was concerned that I'm on so much and I'm still totally miserable and non-functional. She said that if they are helping me so that I can function, then I probably need to be on them. but if not.. I need to consider whether they are worth it or not. She wants me to try these Lidocaine patches - they provide topical pain relief, so I can stick them on the very painful area in the muscles between my shoulders. They are astronomically expensive, but it's worth a try - I truly hope that they work like a charm. It would be AMAZING to have the pain under control AND be on less drugs. She also increased the dosage on my anti-inflammatory medicine to see if that will help at all with the pain and inflammation.

All in all, even though I received a new diagnosis today, it was a good day... the diagnosis of POTS explains many things I experience, has a fairly positive prognosis, and I can hopefully do something to make myself feel better. It is honestly a relief to have a name for the constellation of symptoms I've suffered from for the past few years. And as far as the pain goes, I hope that the Lidocaine patches and anti-inflammatory meds help! I haven't been able to sleep much/well because of pain, which makes me kind of grouchy! ;)

Hannah ;)

Monday, April 9, 2012

More Antibiotics

Today I followed up with the Urogynecologist. She was very nice. She also explained the nurse issue - the nurse thinking I was doing better on the first antibiotic - apparently, one of their nurses just quit, and so one nurse is taking over the roles of two nurses. There was another patient with a similar name who DID improve on antibiotics... and somehow she got us mixed up!

Misinformation did good work today... I needed my labs from Friday faxed over to this doctor before my appointment. She delivered AND I called and she gave me a verbal report on the lab values. My white count is still elevated, up a little bit from where it was on the day of my procedure.

The doctor definitely feels that I have an abscess in my pelvis that is forming a fistula with my reproductive system. She decided to add in another antibiotic on top of the one I started on Friday. It is at the highest dose possible for oral antibiotics. She told me that if I do not improve on this combination of antibiotics that I would have to go to the hospital for IV antibiotics. Hopefully the drainage and the white count and the fevers and the pain will all go away!! I am feeling better today - less pain and more energy - a welcome feeling!!

I am not sure that I can describe how it feels to be fighting an abscess again after so many medications and doctor's appointments and tests and procedures and surgeries to clean out the infections. I just have to remember that this life is NOT about me or my comfort. It's about God's glory, and sometimes that involves me going through pain. But experiencing that pain is an honor: "For to you it has been granted for Christ's sake, not only to believe in Him, but also to suffer for His sake" (Philippians 1:29). Plus, in this same passage, Paul tells us that suffering helps crystallize our vision so that we focus on what's really important: God and other people. "For to me, to live is Christ, and to die is gain. But if I live on in the flesh, this will mean fruitful labor for me; and I do not know which to choose" (Philippians 1:21-22). Living means ministry - bringing others to Christ. Death is gain: we get to be with Christ. So either way, I am doubly blessed, not just to know Christ, but to suffer.

Many of you have asked how you can help me... how you can share in my suffering and support me...
Please visit my Take Steps site - I am participating in a fundraising event that will bring support and research to those suffering from Crohn's Disease and ulcerative colitis. Please stop by and donate as you are able!

Hannah ;)

Sunday, April 8, 2012

Two Doctors

Hello, hello! Again, it's been awhile!

So... I left off last Saturday, when I was feeling awful! The nausea started to go away a few days later, and the pain FINALLY got under control on Tuesday. Praise God! I cannot express what a relief this was! It is terrible to be in a lot of pain and not be able to function at all or even think about anything else.

In doctor news, I called the Urogynecologist on Monday morning to report about the surgery and MRI I'd had, and to ask if I could have a refill of my antibiotics. The drainage has not improved, I'm still running fevers, feeling unwell, and losing weight. I reported this, and the nurse told me that they usually just treat an issue like this with two weeks of antibiotics. I explained that I hadn't seen a change, so I still wasn't any better. She told me to wait until my appointment in a week, and at that time, I could discuss it with the doctor. I asked her if there would be any bad effect of waiting another week while being off antibiotics. She told me no, but to call if I had any worse symptoms. She also asked me to have all the results of the procedure faxed over.

I had been promised by Misinformation that she would call me on Monday with the results of the culture from surgery. I didn't hear from her on Monday, but I left a message for her to please call me and also fax the MRI, op note, and culture report to the Urogynecologist. Tuesday, I called again, and received a call back around 4:30. She told me that she had faxed the MRI report over. I asked, "Can you please also send the op note and the culture report?" "What op note?" "The one from my surgery last Tuesday." "Oh, okay. Hang on a minute." And I waited on hold.
"OK, got the op note!"
"Great, thanks! Did you also send the culture report?"
"What culture report?" Then I'd go back on hold for another 5 minutes. She couldn't find the culture report, so she'd come back on for a few minutes, ask me a few questions, then put me back on hold, then she hung up on me, then I called back, then finally realized that it was done at the hospital from my surgery, not in the office. "OK, I found it! I'll fax it over! Bye!"
"Hold on, please!!! What does it say? Is it positive??"
"Uh, hang on."
Back on hold.
"OK, Hannah, it did show something."
"Do I need to be on more antibiotics?"
"I don't know, I'd have to ask someone. I'll give you a call tomorrow sometime."
I told her that was unacceptable; she was supposed to call me on Monday with those results, and I was out of antibiotics as of that evening.
"I didn't even know you HAD a culture done!"
"Well...yes, you did. You called me on Friday to tell me that it wasn't back yet, so you promised to call me first thing on Monday with the results. This should have been taken care of yesterday. We can't undo that, but I need this taken care of today."
After I basically politely called her a liar, she became more helpful. She refilled my prescription for antibiotics (she said it was a 14 day supply with a refill, but she called in a 20 day supply with no refills, leaving me to wonder how long I should actually take it). At the end of the conversation, she said, "So, are you, like, sick or something?"
"Yes! I'm running fevers, hurting all over, feeling terrible..."
"Do you still have the drainage?"
"Yes, it's still the same."
"Oh my gosh, that's awful... you should be on antibiotics or something!"

Unfortunately, by Thursday, the pain was making a comeback. I was very sad about this. The pain has gone nuts again, and I am usually feeling either miserable or stoned (or both!). I am choosing to be glad about this - Dr. Pain and I were trying out a double-dose of my nerve pain med. These worse days confirm that it isn't helping, so now I can begin tapering off this medication over the next several weeks! It will be 12 fewer pills/day!

On Thursday, I realized that I wasn't getting any better and probably needed a stronger antibiotic, so I called the surgeon's office. They put me through to Misinformation's voicemail. I called them back and told them that I was very sick and needed to speak to a real, live person. They put me through to another nurse. I ended up going in to the office and I saw Dr. Saturday's partner. He had taken care of me when I was in the hospital after my butt-coring surgery last June, and he saw me in the office a time or two, so I figured he would remember me. He didn't seem to recall any of my history - I thought that a girl with a huge scoop taken out of her backside would stand out in one's memory, but apparently it's just a ho-hum, run-of-the-mill type thing to Colorectal surgeons! He told me that I didn't have an infection - the culture just grew out normal bacteria that we all have in our bodies. He said that my pain and feeling yucky are because I have adrenal insufficiency - he thinks I need more steroids because I'm fighting an infection (I don't... I'm also on Prednisone, I've been on stress-dose steroids since the surgery, and we've also had to increase my baseline dose by 50% since January). He also changed my antibiotic for something stronger to fight the infection. So I don't have an infection, but I need more steroids and stronger antibiotics to fight the infection I don't have? I was confused, but I think that the bottom line is that I DO have an infection in my pelvis. My other abscesses didn't grow anything but normal bacteria, but they were definitely infections. Hopefully this new antibiotic will kill the infection!

As I was leaving the office, the Urogynecologist's office called and said, "Since you're feeling so much better on the antibiotic, the doctor decided that we can renew it for you! Which pharmacy shall we send it to?" I was so confused. I had called them on Monday, telling them I wasn't better and wanted a refill, and they said no. I told them I was just leaving my surgeon's office, and he gave me another antibiotic since I'm not feeling better. She said, "Well, you need to decide who's going to treat you - US or THEM!" I told her that I didn't care; I just want to get better, and when I called them to say I wasn't getting better, they told me to wait a week to see the doctor. I called my surgeon's office and they saw me right away. She apologized profusely that she had misinterpreted our conversation from Monday to mean that I was feeling better (not sure where she got that from!). I asked if I should stop following up with them, but she said to keep Monday's appointment.

I honestly don't care who treats me - the surgeon or the Urogyn doctor - I just want to be taken care of and to get better. There have been some pretty major failures from both offices this week that are very disappointing to me. Thankfully, my trust and hope is NOT in doctors (or their staff). They are simply human. My hope is in the Lord! He is my constant strength and shield.

Hannah ;)