Week 11 (almost 12)

Good news and bad news. I'll start with the bad first.

The Bad
I'm now certain that the arm/hand pain I've been really struggling with over the past month is unrelated to the metal issue. The pain continues to worsen, and it's making my life miserable. Basically both arms and hands feel like I have a thousand needles in them, my hands are constantly burning, and I've lost feeling in my fingers. Since I spend most of my day at a keyboard, you can imagine the difficulty there. Sleeping is almost impossible; I spend hours trying to find a comfortable position that reduces the pain to a level where I can actually fall asleep. How I position my neck, shoulders and wrists can effect the pain level. Last night was the first night I got 4-1/2 hours of solid sleep, but it took a lot of time, positioning and medications to get to that point. The last several nights I've not been able to sleep more than 20 minute increments; in terms of sleep, it's worse than before the surgery.

I have reason to believe that the disc I herniated in my neck back in 1992 - though it really hasn't given me problems since 1993/94 - is the cause. I'm going to start with seeing an upper extremities ortho surgeon who my dad has a good relationship with, as he offered to see me on Tuesday. If it's shoulder/arm/hand related, he can diagnose and treat. If not, then I have to make the decision which orthopedic spine surgeon to see. At this point I'm leaning towards the first spine surgeon, for a few reasons. One, he works at the clinic my dad works at so I can maybe get in a little quicker. Second, I'm hoping the treatment can be a cortisone injection; if it is, the pain mgmt physician at that same location is wonderful and I would trust him to do a good job. Though my most recent spine surgeon is my favorite, I feel my current situation would be too "average" for him, and I don't want to waste his time. He has a gift, and that's why he typically only takes difficult patients who need a rare/difficult surgery performed.


The Good
Though the upper extremity pain makes it difficult to think about anything else, I continue to notice positive changes in my back and legs. It's interesting, because it's almost like a transformation. I always felt like something was "eating away" at my bones and muscle. I'm not feeling that so much anymore. However, what I am feeling is almost like the "after-effect." My main leg complain is muscle pain, but it's different than before. In my mind, what I'm experiencing is something that could be taken care of with lots of physical therapy and time. My muscles are damaged, I've had to severely limit my activities over the last couple of years, and between the two my muscles need to be "rebuilt."

So in conclusion, while I feel I'm making some progress I'm still suffering a lot, just in a different way. It certainly would have been better had I not had this arm/hand thing pop up as I think I'd better be able to determine how things are progressing, but my health has not been, and will probably never be, an area where I'm "lucky" or even just normal. I think everyone has a certain part of their life where they struggle - mentally, professionally, relationships, health, etc. I've always been blessed with a wonderful family, a decent brain, a great husband and friends, good jobs...health is my area of struggle. And you know, the fact I have all of those other things going for me has made it possible for me to continue with a somewhat normal life despite the health stuff. I haven't given up yet, and certainly will not be giving up any time soon.

I hope everyone has/had a great weekend.

Week 10 - And Six Days After

It's now been six days since I had the IVC filter removed. The pain levels continue to inch down ever so slightly, and I feel little changes each day. It's like I told my case manager - this week the pain is bad but "tolerable", where as the last few weeks I would have welcomed getting hit by a bus, put in a coma...anything where I wouldn't have to feel the pain anymore as I was going out of my mind. There is an improvement, I just have a long way to go.

Currently all of my energy is going into my job, and by the time I get home at night I'm beat. While my hand pain is much better, it's still bad enough where I'm avoiding the computer when I get home. I'll know I'm making progress when I'm back to doing my evening emails, Facebook and blogs again on a regular basis, not to mention to occasional game of mahjong. When I don't even want to play a simple computer game you know I'm not well!

I'm on minimal pain medications that help me get through the day, but I'm still having trouble sleeping. It takes me forever to get comfortable, and sometimes "comfortable" is impossible to achieve. At least this past week I've been getting in at least 5 hours of sleep a night, so I'm grateful. I'm also grateful for our DirectTV, though the receiver has been freezing up a lot lately. When you can't hold a book to read, hold a phone to talk to your family/friends or type on a computer, at least the TV is there. Thank goodness for "The Office" and "Arrested Development"; they definitely help keep my mind off the pain. And though I've probably seen each episode 10+ times for this season, I'm also grateful for "Top Chef" as I just love that show.

I had orders last week to start physical therapy; I have to start looking into that. I have a follow-up to see my spine surgeon in April, and I know he'll want a status report at that time. Which reminds me...I forgot that I was to make an appointment for next week with the vascular surgeon as a follow-up to my procedure last week. Oops, completely forgot. I'm going to "blame" Brad, as they told me this information before I left the hospital...when I was heavily medicated, exhausted, in a lot of pain and really not paying attention! Given the distance, I'm guessing that all I really need to do is just do a call/check-in and let them know how I'm doing and that the site is healing well. I basically just have a small, circular scab on my collarbone, along with some light bruising from a few injections and pressure put on the area during the procedure. It looks like what you'd find after you have an IV taken out, but on a slightly larger scale. I think it's really minimal considering how big the IVC filter was. I don't know what they did to me during my spine surgery, but they did something around my neck area that looked much, much worse in terms of bruising and size!

So that's where I'm at. I'm hoping that a week from now I will be able to report continuous improvement. Given what I've seen over the last six days, I'm very optimistic. Again, this will take time. Tomorrow is a working Friday (we get every other Friday off where I work, as it's a 9/80 work schedule), so one more day and then it's the weekend. I'm looking forward to having some time at home, and will hopefully be feeling good enough to do some much needed cleaning and errands. As always, thank you to everyone for your emails and Facebook messages; I feel so disconnected from people lately, so it really brightens my day to read them.

Week 10

Made it back to Ohio on Saturday around 7pm. Brad drove the whole trip, which I was grateful for. Was - and still am - feeling very exhausted from the procedure and just everything I have been through the last several weeks. We attempted to stop in Pittsburgh for a nice early Valentine's Day dinner, with no luck; every place was swamped. In the end we settled for picking up some Bob Evans down the street and eating at home.

I think it will take several weeks before I know the true outcome of these procedures I've had. I feel exhausted, yet the pain appears to be letting up a bit. I think my body chemistry is off and has a lot of "re-adjusting" to do. I feel overwhelmingly exhausted, weak and sick; try as I might, I'm having a hard time feeling "normal." I slept a lot over the weekend, and continue to feel tired. I'd love nothing more than to spend the week at home recuperating, but there is work to be done. I can only hope that once I get to work I'll find some energy to be productive, and that the days will go by quickly. I also must force myself to drink lots and lots of water (I'm horrible at that), and to eat as healthy as I can.

I doubt I'll post every day, but will definitely post every couple of days so you know if I'm seeing any improvement or not.

Filter Removal

Arrived at the hospital at 6am and checked in. After going through the whole process, it was realized that lab messed up and just cross-typed my blood platelets yesterday and didn't do an actual count. So, I was wheeled into the Radiology area where the procedure was to be done, and ended up being delayed about two hours. My platelet count was 16 (hey, that was up from last Friday!), so they did the platelet transfusion which took about 25 minutes. In order to keep on schedule they had a few patients go in before me, so by the time I was wheeled in I was definitely ready to go.

The procedure at minimum was to take 45 minutes, but it went really smoothly and took closer to 20-25 per the staff. I was awake the whole time, though they gave me drugs on several attempts to put me in more of a sleep-yet-still-awake mode. They went in through my neck so my whole head was covered and I couldn't see anything. The surgeon spoke with me the whole time, telling me what he was doing, and before I knew it the thing was out. Afterwards the staff showed it to me, and it was pretty cool. A lot more connected pieces/parts than I thought it was back when they put it in, but was glad to see it out.

I was immediately given a chest xray and things looked clear. I was coughing up blood for about 20 minutes which freaked me out a bit, but was told it was normal. Sat in the recovery area for about 2 hours, got a turkey sandwich and a percocet for the arm/hand pain I was having. Got the discharge instructions and was back at the hotel by 1pm.

I basically slept most of the afternoon, though I'm in a lot of pain/discomfort. Brad was kind enough to go out and get dinner, so I thought it would be a good time to do a quick blog. I have a feeling I'll have a rough night, but have approval to drive back home tomorrow. I'm looking forward to it; things are just more comfortable there.

So this is now the time for "the big wait". I am currently nickel-free; what will happen now? If I get better, I'll probably be a case study. If I don't, then I have a lot of thinking to do as to where to go from here. No change in pain yet, but it hasn't even been 12 hours. I want to drink lots fluids, eat healthy, etc. My body has a lot going on and it's going to take some time for everything to be where it's suppose to be.

I hope everyone has a great weekend and Valentine's Day. I'll post when we're back in Ohio.

Week 9 - Day Before Procedure

Hello from Baltimore. Brad and I left immediately for Maryland after work last night, which was interesting. High winds and rain through central PA; saw lots of transformers blow and at one point there was a tree that had fallen on the interstate, but no damage to us or anyone as far as we could tell. Made it to Cockeysville about midnight and fell asleep pretty instantly. It was a very long day. A long week, actually, and I'm pretty exhausted.

Today we went to the hospital and saw my spine surgeon first. Dr. McAfee is just the best, I must say. They did x-rays and everything looked perfect. Perfect bone growth, everything is in place. Based on how the x-rays looked and how I've been working and the fact I drove from Ohio to Maryland, he stated that I looked more like a patient who had surgery 4-6 months ago instead of 9 weeks ago. He couldn't believe I could drive that long of a distance, and immediately recorded it in his recorder where he gives his patient notes. I now will start therapy in Ohio to help rebuild my muscle strength, and will do a follow-up in two months. I have no restrictions, including no more medication restrictions.

The whole ortho staff was so friendly and warm to us. My case manager made sure that I was taken care of for the vascular procedure tomorrow, making sure that the correct lab work was going to be done, etc. She told me to call her and let her know how things went; they are all anxious to hear how it goes. It's really a great office.

I had my bloodwork done, but no call from the vascular office giving me the count or telling me to come in today. My guess is they will do a quick count in the morning and then do a transfusion. The surgeon wants my platelets at 50k, and I'd be amazed if they were at that level on their own. I could actually see the filter in my spine x-ray shot, and it's a lot bigger than I thought it was. I kept thinking it was some little thing, but in terms of length it's the size of a toothpick with three long prong-like arms that join together at the end. Now it makes a bit more sense why I might be reacting to it so badly.

WhileI was able to drive last night, my hands feel like they have a thousand pins in them today and my legs are killing me. We went to another Marriott hotel today (they have a promotion and to get points you have to stay at a minimum two locations so we're just playing the "game") around 2pm. We're staying in a Fairfield Inn that is across the road from the Residence Inn we stayed in back in December. We're in a mini-suite and it's an amazing hotel. It's so modern I feel like we're in a Westin Hotel. Everything is so modern and state-of-the-art. The beds are also new; we saw the delivery truck when we were here in December and were jealous, as the Residence Inn beds were horrible. This will be a good place to stay for a couple of days.

Tomorrow I check into the hospital at 6am, and then I think the procedure is scheduled for somewhere between 8-9am. I don't know what's involved, just that it will be longer than when they put it in, which took about 20 minutes. I'm guessing I could be at the hospital until at least 2pm, as last time they kept me several hours to make sure the drugs wore off, that I wasn't bleeding, etc. We'll then head back to the hotel and I'll rest for the day. Saturday the plan is to head home; hopefully weather will cooperate.

Well I can't type any more as the pain is too much, so I'm off for now. Thank you all again for your support; I know I'll be ok, I'm in great hands. I honestly wish I could go here for all of my medical care, it's just a wonderful environment and unlike any place I've ever been.

Week 9 - Finally!

First, my apologies. I wrote this Monday but for some reason it didn't post; so this is really from Monday, though I'm posting on Tuesday. - CLF

To my shock there are people still reading this, so I better keep this thing up to date!

I have good news today. I finally got a hold of the vascular surgeon this afternoon, and he confirmed we will take care of my low platelet count there. He also confirmed I did not need to follow the treatment path the hematologist here recommended, thank goodness. I had already canceled it this morning, so that was a big relief there. Basically I will go in on Thursday, have the hospital lab test my count, and if it's lower than 50,000 they will arrange for a platelet transfusion either Thursday afternoon or Friday morning before the procedure.

I was originally going to drive to Maryland on Thursday morning, but will now likely drive there after work on Wednesday. I want to get my blood tested first thing on Thursday so there is time for the surgeon to decide how to handle my platelet count. In the early afternoon I meet with the spine surgeon, at which time I'll have x-rays done to see how the fusion has progressed. If things go well there, I could finally be cleared to start taking anti-inflammatory medications again. I don't anticipate any negatives on the film, as my back really feels great these days. I have sore moments, but it's more muscle-related than anything.

Another positive thing is that Brad might be able to go with me on this trip. His mom went off dialysis on January 30, but so far she is not showing signs of decline. We were thinking my mom would go with me for this, but if Brad's mom is still doing well he will join me. I love my mom and she's a wonderful caretaker and I have a lot of fun with her, but Brad and I have been through so many procedures together that we just "know the drill." It's sad, but we do! Plus I would likely be limited in how much I can drive, and I know my mom was dreading having to drive my car in the crazy Baltimore traffic!

It's amazing how a small, unknown hospital in a suburb of Maryland - and down the street from Johns Hopkins - has dealt so positively with my situation in complete contrast to the two big Cleveland health systems. I know that come Thursday and Friday that I will be in good hands.

I'll say it again - I appreciate all of the love, support and prayers from everyone. I certainly was not expecting how things played out these last several weeks, and I've needed every ounce of help I could get. I truly appreciate it.

End of Week 8

Today I can type a little, so I'm taking advantage of it. It was a rough Thursday/Friday/Saturday, but here is the update.

I have still not been able to connect with my vascular surgeon. All I know is that my ortho case manager told me he had a plan to get me admitted into the hospital, and made it sound like I could bypass any crazy treatment the Ohio doctors wanted to put me through. But, I still have no confirmation on this.

On Friday I saw the hematologist and Brad was great enough to go along. The doc wanted to put me on a multi-week NPlate treatment, but when I told him I wanted to have my surgery on the 13th he then recommended Rituxan. Actually, he wanted to do another one of his crazy steroid treatments, but I told him my ortho office was against it due to the fusion.

The doctor and his nurse manager were unwilling to give us much information, including side effects on the Rituxan. Since we were there though, we had to schedule a time for the one-time treatment. I was scheduled for 10:30 on Monday (tomorrow), and was told it would take up to 6 hours to administer through an IV.

Rituxan is usually used for lymphoma patients. The hematologist wanted to try it, and told me that if he saw my platelet count raise at all that he'd approve me for surgery. However, despite the treatment it would not raise my count high enough and I'd have to have a platelet transfusion prior to the surgery on Friday. My platelet count - though I found out that evening - was a personal low of 9 on Friday. This was down from 32 on Tuesday and 25 on Monday. In other words, my platelet count is all over the place. What is so strange is that I have absolutely no symptoms. Even when they did the three blood tests this week there was no mass bleeding - or actually any real bleeding - afterwards. There was no bruising. I had a papercut, and was fine. It just doesn't make sense.

The hematologist and his nurse manager, in their own subtle way, made it clear that they think my issue is not related to nickle. They think it is ITP, which, other than the low platelet count, I do not have a single symptom of. They made it clear that they figured they would be seeing me again soon, after which we could discuss a long term treatment plan. I certainly hope in the end it is not ITP, but if it is, this is the last place on earth I'd go to.

After a lot of research, what I found out about Rituxan is that it has a lot of horrible side effects that can not only occur immediately during/after the administration, but up to 12 months after. They are also long-term and deadly. On a reputable site it said to check with your doctor before taking it if you have a low platelet count (which I do) and to check with your surgeon if you are to have a surgery (which I am).

This being said, I have come to the same conclusion I had in November. This hematologist is crazy, treating me like a cancer patient, and I think is trying to kill me. I am therefore - with the strong blessing of my husband and parents - canceling and refusing the treatment. We understand this may delay the removal of the filter, but all of us agree that these treatment options are unacceptable.

Tomorrow I will once again try and try to reach the vascular surgeon. I need to know his plan. I'm hoping he truly does have a way around this whole Ohio mess and I can just have whatever I need done in Maryland.

So that is what is going on. Saturday was a horrible day; so much so that I almost went to the ER on several occasions. I don't think I have ever been so scared. The only reason I didn't go was because it was a Saturday and I figured it would be busy and I would have to sit around and wait forever. Plus, I was so bad I didn't even know how I would make it there. If I had woken up today in the same pain I was going to go in the morning, at least for some pain medication. As bad as the pain was before the surgery, this is even worse and scarier. The medicines I take provide little relief, and it's really terrifying. This Friday - which will hopefully happen - cannot come soon enough.

Today, for no particular reason, is a better day. I am still in a lot of pain, but my brain is able to tolerate it better. I'm still about a "9", but it's better than the "50+" I was yesterday on the pain scale range.

I'm finding it difficult to type any more at this point, so I'll end it here. Hopefully my next post will be giving the all-clear to go to Maryland have this filter removed.

Week 8 (Continued Part 2)

My ortho case manager called this morning, and she finally connected with my vascular surgeon and explained the situation to him. He is going to call me directly today, but it sounds like he has an idea to somehow admit me and get the filter out without going through the typical approval process.

I can't wait to hear what he has to say. I'm all for creative solutions!

Week 8 (continued)

In a very strange deja vu, I'm back where I was last November. Almost a week away from surgery, a low platelet count, being sent to a hematologist in the Cleveland Clinic system. I tried to get out of the system, and was sent back in today by my non-Cleveland Clinic doctor who "thought it would be best".

I have an appt this Friday with the hematologist that tortured me and acted like a loon when I last saw him. I'm not optimistic. I was hoping for a platelet transfusion but it sounds like, per my primary care, that the hematologist would rather do some IV treatment that would take several weeks to build my platelets. Obviously that would void my Feb. 13 date to remove the metal that is likely (at least I'm hoping) causing all of this.

I'm defeated today. This was not part of the plan. It's tough to be back where you started, go through it all again. Except it's a little worse because I'm still very limited on what I can take for medicines; nothing that helps with inflammation or the pain. I'm exhausted, and between the torturing pain, lack of sleep and having to work a full time schedule it is just too much. To add IV "treatments" to my schedule, and wanting to be there for Brad given everything going on with his mom...I don't know how I will physically and mentally survive if this is extended another month.

I hate to write such a "down" blog, but that's where I'm at today and that's the situation. I don't think anyone is reading this anymore, but for those who are and who tolerated my ramblings today, I appreciate it. I just needed to vent, and for me writing is the best way to do so. It has just not been a good day.

Week 8

It's been long enough where I'm switching to weeks. This is week 8.

Currently I'm in bad shape. The pain I was experiencing in my hips, legs and feet has now also spread into my arms, hands and every finger. Horrible aching, pins/needles, numbness, etc. Medicine isn't helping and it's pretty overwhelming. It's actually worse than before the surgery, and never lets up.

I'm going into work almost every day now for at least five hour periods, but it's tough and I'm afraid will soon be made impossible if symptoms continue to worsen. I'm even struggling to type, hence my lack of posts lately or any computer-related correspondence/email. I'm trying to get the IVC filter removed sooner than the scheduled date of Feb. 13, and will hopefully know tomorrow whether that is possible.

Of course as I was writing this I got a call from the local hospital where I had blood work done today for the pre-op testing, and my platelet count is once again low - 25. Because I was through this before the previous surgery, I'm hoping this now doesn't delay the procedure beyond the 13th.

I'll end with good news - my back feels great, solid, not a single bad issue there. Now I just need to get the rest of my body feeling that way!