Wednesday, October 24, 2012

Random News...

So, I realize I've been slacking at blogging lately. Sorry. I guess after three years, I grow weary of writing about my health issues from time to time! But I do have some bits of news to report...

I went off my methotrexate (arthritis treatment) for a few weeks as I recovered from the serious illness that landed me in the Step-Down ICU for 5 days. I was able to resume the shots last Thursday, but my body could definitely tell the difference. I suffered a bad arthritis flare, needing to sleep constantly, with stiff, swollen joints that made life even more painful than usual. Last Sunday night, the pain came to a head and was simply intolerable... so I wound up in the ER. It was an efficient trip, if I do say so myself... I went in, got an IV, received a couple pain shots, and was back at home in about three hours!

Thankfully, by this weekend, the flare-up went back under control. I'm doing methotrexate shots twice a week now - we are hoping that spreading out the medicine will make it easier for my body to tolerate. The shots give me fatigue, migraines, and nausea, but I think that it's worth it to keep my arthritis under better control. JP Dr also believes that a higher dose of meth will help prevent my body from having the SIRS reaction to illness or stresses in the future.

I was supposed to go see Dr. Saturday the morning after my ER adventure. I called in to ask if I really needed to come. Misinformation told me that I no longer need to follow up with them unless I develop problems. It's not often that I get to cross doctors off my list, so I was quite excited to hear this news! I like Dr. Saturday, but I really prefer fewer doctor's appointments... yay! I am thankful that the wound by Squirt is doing better and doesn't require any treatment.

Squirt has decided that things were too boring, so he started prolapsing - protruding much further than he should. That makes life uncomfortable and complicates his management. I've had some issues with leaks, which is very unusual for me. Squirt v 3.0 has been quite a challenge compared to the earlier versions. Hopefully we'll reach a truce soon. ;)

I've been able to taper down on my steroids a bit. JP Dr had instructed me to double my dosage for several weeks. After I sort of stabilized, I started to feel a bit over-steroided - constantly hungry, very emotional, face swelling more than usual. That was my cue to start tapering a tiny bit. I have gone down two tiny steps over the past couple weeks. We'll see how low I can get before my body protests. I  still have many weeks before I'm back to my pre-surgery dosage. And my pre-surgery dosage was 50% higher than the dosage I'd been at for the previous year. I have no idea why my steroid needs fluctuate so much, or why they are so much higher than what "normal" people need. Just another mystery of my body!

Thankfully, with the exception of a few days here and there, my POTS symptoms have been much better of late. I have much less dizziness, shakiness, and heart racing. That's so encouraging and exciting!

I continue to have my blood checked often to monitor my clotting times. After concern that I was still clotting too fast, last week's results were quite a surprise - my blood is now clotting way too slowly! So I'm trying to avoid major trauma and things that could make me bleed out. ;) I can tell that it's going to be a constant balancing act for the next several months!

While my life still seems to revolve around my health issues, I'm reminded that God has allowed a lot of improvement in many ways. I am able to eat and enjoy food more than I have in years! I have compassionate doctors who listen to my concerns and allow me to listen to my body. I'm learning how to manage my health issues. Celebrating small victories is the name of the game!

Hannah ;)

Sunday, October 14, 2012

Happy 3rd Birthday, Squirt!

Dear Squirt,

Happy birthday!
I can't believe you're three years old today... not that it's been totally your fault, but it's been quite the experience so far! I sincerely and earnestly hope that our next three years together will have quite a bit less excitement and adventure than the first three. I must say, there's never been a dull moment with us, has there? In three years, you've been born, re-made, and re-made again. Here's hoping you can maintain your current form for several years to come!

Squirt, your birthday also symbolizes the end of my struggles with my inflamed colon (whether or not it was the end of my illness is sort of up for debate, as I've continued to be quite sick, and my doctors lately are leaning towards a "Crohn's disease" label for me)! While removing my colon ended up being less than the promised "cure," I do not regret my colectomy. In fact, I see you, Squirt, my ostomy, as a symbol of the freedom I enjoy since surgery.

I found this on Google Images - thanks! ;)
To illustrate the complications of life with a sick colon: before surgery, even a simple trip to the grocery store was a stress-inducing experience. I got rather panicky if I wasn't behind the wheel of the car - only the driver has the freedom to randomly pull over at gas stations to use the bathroom. Once I arrived at the store, I needed to know where the bathroom was inside. The urge to "go" seemed to always strike when I was at the furthest point in the store from the bathroom. To counter this, I usually chose to shop at small grocery stores... and when the urge came, I'd just leave my cart and make a run for it, hoping to make it on time. ;)

Squirt, thanks to you, I am no longer at the mercy of an inflamed, ulcerated colon... no more must I exercise my bathroom radar. I don't have to wake up an extra few hours early or avoid eating breakfast to attempt to curb the number of bathroom trips. I don't have to dread or fear sudden urges to go to the bathroom during church, sporting events, concerts, car trips, during school tests, and I don't have to try to hide or explain embarrassingly interminable bathroom trips. I'm fine being the passenger in a car. In short, despite wearing a bag of poop on my belly, I'm so much more "normal" than I ever was with my sick colon.

While living with you was not something I would have chosen or desired, I have wasted hardly a moment in thoughts of discontentment or wishing that I didn't have you. I'm thankful to have you, and I'm thankful that my colon is gone. I praise God for the freedom I've enjoyed, thanks to you. So to my eternal "sidekick:" many happy returns.

Hannah ;)

Thursday, October 11, 2012

A Bleeding Update

I followed up with my doctor last week, and she prescribed me anticoagulant pills, which I started taking this weekend. I have to follow up with her a few times a week to get my blood levels checked - they want to keep my blood "thin:" it needs to clot much more slowly than normal. Thankfully, they are able to check this with a mere finger stick - no big needle in a vein needed, which is great news for me, my veins, and the lab tech!

On Monday, I followed up with the doctor for the second time. Unfortunately, my levels are quite low- my blood is still clotting "normally," and they'd like it to clot much more slowly than that. The doctor commented that people typically have to stay in the hospital until they are successfully transitioned onto an oral anticoagulant and their levels are adequate - I'd STILL be stuck in the hospital! I should probably send Dr. D flowers for allowing me to stay at home. If I'd have stayed in the hospital, I probably would have caught someone else's bugs, had poor pain control, be awakened several times per night, be continually poked, kept the entire nursing staff busy trying to keep an IV going... and I would have probably developed some new problem. I just don't do well in the hospital. Have I mentioned I'm thankful that I'm at home? ;)

Tuesday was a day of great rejoicing, as I finished my twice-daily anticoagulant shots. I was running out of non-bruised places on my hips to inject!

I noticed that all the veins on the right side of my upper body are sticking out in a lovely pattern - I look like Spiderman on that side, which is really cool! Unfortunately, despite my best efforts, I still lack the ability to make a web or swing myself between buildings. I will keep trying daily, although I do have to be careful to not fall in my anti-coagulated state. Bleeding out in the process of saving innocent citizens from evil villains is not cool.

Due to my brush with death a few weeks ago, I've skipped two doses of my methotrexate. The meth is supposed to keep my arthritis in remission. Well, I guess it was doing quite a good job, because without it... I feel terrible. Since Friday, I've been simply exhausted - sleeping away most of the day, and still lacking energy when I do wake up. All my joints are terribly stiff, swollen, and achy. I feel pretty bad most of the time. The doctor advised me to just lay low this week... not that I have the energy to do otherwise... My pain has definitely increased quite a bit, and so I've increased my meds accordingly, but really wish I didn't have to. Hopefully the methotrexate will kick in really quickly and destroy the inflammation in my body that's causing all the pain.

In happy news: while I was in the hospital, I changed my bag and discovered that the wound beside Squirt is now TOTALLY HEALED. That's right! ;) YAAAAAY! Praise God! It's a small thing, but I am incredibly thankful for this healing. And this time, it didn't take 9 months - it "only" took 4.5 months! I recently also passed up the one year anniversary of kissing Edgar the WoundVAC goodbye - I am so thankful for that! I had an open wound on my backside for over 9 months, and I still shoot up many a thankful prayer almost each time I sit down and DON'T experience the pain of sitting on an open wound. That was a long, hard road, and I feel very blessed to be on the "tail end" of butts about it! ;)

Hannah ;)

Thursday, October 4, 2012

Home, Back Again, Home Again: Part II

When I was in the hospital, I didn't sleep very well - someone comes in to wake you up just about every hour. But each time I woke up, I was momentarily disoriented until I heard the beeping of my machines. On Tuesday morning, I woke up and was overjoyed to hear only the whizzing of my fan and to watch my own bedroom come into focus. Best feeling ever. My pain was a lot better, except for a very sore neck and right shoulder, which I attributed to laying around on the lousy hospital bed for several days. ;) As I stretched and woke up, I noticed that my right elbow seemed really swollen. I had been poked there unsuccessfully numerous times during my hospital stay, and I now had a big hematoma from all the sticks!

Tuesday was a follow-up appointment with JP Doctor. I still have visible swelling in some of my joints, but they are much better than they were when I first got out of the hospital this summer. Overall, she is pleased with my steroid level - it's a lot more than I should need for just replacement doses, but the amount I'm on seems to help me stay functional. Whether the roids help from an adrenal standpoint, a POTS standpoint, or an arthritis/autoimmune standpoint, I don't know, but it's working! JP Doctor also got to hear the whole story of my hospital visit! She thinks that I had the SIRS as a result of my autoimmune issues - my immune system wildly overreacted to what should have been a "normal" illness. The conundrum seems to be: I take methotrexate and steroids to suppress my immune system in an attempt to keep my body from attacking itself. Unfortunately, it seems that at my dosage, I'm immunocompromised enough that I'm susceptible to getting sick, but not suppressed enough to prevent the SIRS from happening when I get sick. So basically, I'm suffering all the downsides of suppressing my immune system...without reaping any of the benefits. JP Doctor wants me to resume methotrexate at a higher dosage just as soon as possible once I'm off antibiotics, as she believes that my immune system is still dangerously hyperactive. 

I noticed my arm was feeling more swollen, and it occurred to me that this was the arm that hosted the PICC line. I showed JP Doctor my arm, and mentioned that I thought I should probably get a sonogram of my arm to make sure I didn't have a blood clot. She joked that she should just give me my own prescription pad, since I seem to know what I need. She agreed that the test would definitely be a good idea, just to be safe, so I left with an order for a sonogram. I was to find an imaging place in my area that would do the test. 

As I exited the car upon arriving home, however, that timeline changed. I noticed that my right arm was very heavy. Looking down, I barely recognized the huge, purple, numb limb. My mom and I grabbed a few things from around the house and did a quick about-face and drove to the ER. I was put at the top of the list at triage, and was taken back pretty quickly - I guess loss of limb is pretty high on the priority list.

I was terribly disappointed to have to return to the hospital less than 24 hours after being discharged! And it felt so weird to be in the ER and NOT feel terribly sick or in terrible pain - I've always been so out of it in the ER! An ultrasound confirmed that I did, indeed, have a large blood clot in my right upper arm. The PA said that the PICC line was more than likely the cause of this clot. He asked if I was in pain - the arm did hurt some, but not much - and he diagnosed what I had assumed was a bad crick in my neck as referred pain from the clot. He said that I'd follow up with Dr. D, the internist who took care of me during my last hospitalization. Dr. D would start me on anticoagulant shots, and then move to an oral anticoagulant. I started to ask a few questions, and the PA kept saying that he wasn't sure, but Dr. D would answer that. I asked, "Is that it? So I just leave now, and make an appointment with Dr. D?"

The PA frowned and said, "Oh, no, you aren't going anywhere - you have to be admitted here for several days." 

At first, I thought he was joking... he wasn't. I could feel the tears welling up in my eyes. I started rambling... asked if I HAD to be admitted - I JUST got out of the hospital... how long would I have to be in the hospital... did I HAVE to be admitted? Was there any way I could just go home?

He apologized and said that it just wasn't safe for me to be walking around out of the hospital until my blood levels reflected an adequate level of anticoagulant. Once you form one clot, it is very likely that you will form another one, or that the current clot will continue to grow. Also, there is a small chance of part of the clot breaking up and going to the lungs or the brain, which is very, very serious. It is standard for people with clots this big to stay in the hospital for several days, where they are monitored very closely. He left to get the papers in order and find a room for me. 

I started trying to call to cancel some previous engagements, but I had no reception in the room. I wandered the halls for a bit without success, and finally ended up back in the ER lobby to make the calls. After a few minutes, my nurse emerged. "THERE you are! Everyone's looking for you so you can give yourself a shot so they can send you home!" 

I thought he was joking with me, and said, "You're just saying that to lure me back to the ER - you're scared I'm going to run away!" He said, "No, really, they decided to send you home, you just have to give yourself a shot first." I kept asking why, but he wouldn't give me a straight answer, so I wasn't sure if I should believe him or not. As I got back in my room, my mom confirmed that I was going to go home, but she didn't know any details, either. 

The nurse brought in the anticoagulant, and said that I had to demonstrate that I could properly give myself an injection. By God's providence, I've not only received this shot daily after each of my surgeries, but I had also administered this particular injection to many patients when I was a nursing student! Lemme tell ya, it's more blessed to give than to receive. That stuff stings like a bee. 

After demonstrating my proficiency, the doctor and PA came in. They said that upon speaking with Dr. D, he said that he felt I could take care of myself at home, as long as I could self-inject the med and promised to follow up with a doctor within 24 hours. At that point, I would have agreed to inject myself in the eye if that meant I could go home! Dr. D, you are a champ!

So, after an exciting day, I found myself more thankful than ever to say good night to MY family, slip under MY covers in MY room in MY lovely home... without the beeping of machines, the hassle of tubes and wires, the interruptions of nurses and techs and doctors... After going home, back again, and home again, I feel that I can say with confidence: 

There's no place like home. 

Hannah ;)

Wednesday, October 3, 2012

Home, Back Again, Home Again: Part I

Many thanks to all for your encouragement and support during my last hospital stay! I wasn't up for many visitors, but I was so thankful for the love and care that so many people showed me!

So...Sunday night was a rather challenging night. I had to skip many of my oral meds for the first few days of the hospitalization - I couldn't keep anything down, and even if I had kept it down, I was unable to absorb anything.The doctor replaced many of the pills with IV medications. One of hte meds I had to stop was my main pain med, one that stays in your system for several days. So, although I skipped it on Thursday, Friday, and part of Saturday, I didn't feel the effects until Sunday. And wow, I tell you what, that medicine has been working great, because without it, I was suddenly in a ton of pain on Sunday night. 

It was the weekend at the hospital around shift change - sounds like the perfect set-up for a tragedy of Shakespearean proportions - the absolute worst possible time to have a problem that requires your nurse (who just wants to go home) to page a doctor (who is a random doctor who's never heard of you before). There was quite a bit of delay and drama and miscommunication and misunderstanding... and in the meantime, I suffered. I am so thankful that I was at a hospital just a few minutes from home, so my mom popped in to advocate for me. By midnight, over 6.5 hours later, we had a slightly better plan in place, and I was able to be comfortable enough go to bed.

Monday morning dawned, and my nurse broke the news to me that several of my electrolytes were pretty "off," so she doubted I'd get to go home that day. I was really bummed, but thankfully, the nurse talked with the doctor, and they cut me a deal: if I could drink down a very, very nasty concoction of electrolytes, they'd allow me to go home. If not, I'd have to stay until late evening/early morning Tuesday to go home. Guess what I chose? ;) I would have consumed a few dozen electrolyte shakes to get out of the hospital! 

This hospitalization left me with very mixed feelings. On the one hand, it was sort of ideal. I came in very sick, but the doctors and nurses knew just what to do, and they did it, after consulting with my specialist by phone while I was in the room (so I could add details as needed). After I was admitted, I woke up each morning feeling substantially better than I had the day before. As I prepared to go home, I had to change back to oral meds, eating by mouth, and drinking LITERS of fluid. My body responded wonderfully, absorbing pills, food, and drink. I felt more energetic and healthy and strong. It's rare that I leave the hospital feeling better!

On the negative end, it's very scary how quickly I went from feeling fine to being septic! We'll never know for sure what exactly I had going on - the doctor thinks I probably had a viral GI bug, plus a bacterial infection in my blood (called a superinfection - you are weak from fighting off a virus, so a bacteria easily infects the person), so there's no real way to prevent this reaction.

Please join me in thanking God for bringing me through another hospitalization! And pray that I will be able to stay healthy and that God would protect me rom further SIRS reactions!

Hannah ;)