Not much significant has happened, but there are a few things worth mentioning for those of you who have been keeping up.
First of all, you’ll remember my determination NOT to have a grab bar in my bathroom and, instead, ordered a floor-to-ceiling pole. Time for Plan B. The wonderful website where I’ve been ordering my medical goodies goofed and what I got was an extension for the pole, not the pole itself. Unfortunately, the pole would cost about $250 and that’s just more than I want to spend on a temporary situation. So, yes, I’m going with the grab bar and contractor/husband Jack will be installing it so at least I don’t have to have other contractors in my house.
I took my fourth dose of MTX this past Friday. So far so good. No side effects. I took it early (6:00 pm) again on an empty stomach and did fine. Slept like a baby again for the first time since the last dose. I overdid myself this weekend, though, with shopping, cooking, laundry, etc. I was in a lot of pain by Sunday and actually wound up staying home in bed on Monday as well.
My brother is going to come into town and stay with me the week after the surgery (Sun-Thurs). Jack has some out of town trips that week and it will be good to have someone around. He has his own back/health issues, though and I told him it was going to be like the infirm taking care of the invalid. I’m sure we’ll get by, though.
I’ve got some other friends “on call” if I need anything, which means a lot.
This Thurs and Fri have some exciting events. I get my pre-op physical on Thursday and will (hopefully) donate my last unit of blood on Friday. Both have prospects of being traumatic events, but I’m optimistic everything will go well with both.
We’ve cancelled the trip to Las Vegas August 12-14. We just ran out of time. Jack has to be in Phoenix the 15-16 and I may try to go to a family gathering out of town on the same days. Then all of a sudden, it’s Sunday before surgery on Monday. This will give us, especially Jack, some breathing room to get everything done before my hospital visit.
I’ll update this weekend after the checkup and blood donation. Thanks for checking in.
Last night was the third dose of Methotrexate. I took it on an empty stomach about 6:00, ate dinner about 8:00, and took the rest of my nighttime meds and supplements around 9:30. I never did get the creepy crawlies, but did get a raging heading about 1/2 hour after I took the MTX. It didn’t hurt when I was lying down, which is why I must not have noticed it before. I also got the first good night’s sleep I’ve had in weeks and woke up less groggy this morning than previous Saturdays. So taking it early is probably a good thing. I’ve only got two more doses before surgery, but that ought to give me a good enough sample to get this process nailed.
On the insurance / $$$ front, I think the entire surgery will cost me about $5,500 out of pocket, which is less than I thought. Making deals with my surgeon and anesthesiologist helped a lot. That doesn’t take into account the loss of revenue since I won’t be working full tilt in August and probably September, but I’m working on that too. (Thank you, clients.) That’s the downside of working for yourself — no sick pay.
The home health care nurse came by on Thursday morning and she is delightful. The insurance has approved four visits. She said the first visit will be either the day I am discharged or the next morning if I don’t get discharged until late in the afternoon. I also found out from my Blue Cross nurse (more about her later) that they’ve approved 10 home visits by the physical therapist while I’m off. Sounds like I’m going to be busy!
Blue Cross not only has a 24-hour nurse hotline, but it has a program where they have nurses call people who are scheduled for surgery to make sure they don’t have any questions, have the patient information they need and provide them with resources. My nurse is Maria and I now have her direct line in case I have any questions or issues.
I do need to check to see if my policy covers home aid. I think I’d like someone to come in the mornings to help me in and out of the shower and get me up for the day — at least for the first week or so. Jack is more than willing and capable of doing this, but I don’t want him to have to make the decision of choosing between taking care of me or running his company.
Jack decided I needed a grab bar in my bathroom next to the toilet and I have rebelled. Sorry, but grab bars are for old ladies and I’m not there [yet]. So instead I’ve ordered this pole that extends from the floor to the ceiling. It can also be moved to the bedside or whereever I might need some extra help getting up or down. I’ve always wanted my own stripper pole and now I’ve got one!
The next blood donation is Monday at 9:30 am. I’ve got my mind made up that I’m not going to have issues with it, but honestly, I get physically nauseated when I think of it. I’m trying visualization techniques where everything goes okay and even when I envision things going smoothly, I literally get sick to my stomach. We’ll see. One way or the other, that part will all be over Monday and for me that’s a major hurdle to put behind me.
The following week I have my pre-admit checkup/clearance with my internist. The week after that we have our sojourn out to Las Vegas for Jack’s birthday. Then it’s time for the surgery. It’ll be here before I know it.
I’ve gotten a lot of good thoughts and support and I appreciate each and every one of you. Thanks for checking in.
I took the second dose of methotrexate last night. I took it around 9:30 and was sound asleep soon after 10. I was wide awake with the creepy crawlies again about 11:15. Four hours and two really bad science fiction movies later, I fell back asleep at around 3:00. So now I’ve got a week to figure out a strategy before my next dose. Right now, my inclination is to take it around 6:00, so by 10:00, I’ll be ready to go to bed and to sleep.
Lack of sleep is one of the major problems that arthritis sufferers have because of the pain. It’s not nice that our medicine contributes to the problem.
I spoke with Dr. Cheatum’s office about having to go off the medication before my surgery and, to my surprise, they immediately said the recommendation is two weeks before to two weeks after. After Dr. Tucker warned me that Dr. Cheatum’s stance was that you didn’t have to discontinue the medicine, I was pleasantly surprised. Based on my schedule, I’ve actually got a compromise of 10 days before and 10 days after.
I’ve finally found some blogs of people who are/have taken MTX, and boy are they depressing. Right now I don’t have any side effects besides being tired. I’ve decided NOT to follow the blogs. Either I’ll get the side effects or I won’t. Everyone reacts differently and I’ll just make myself crazy worrying about what might happen. Dr. Cheatum has me on folic acid which helps mitigate the side effects, and not everyone who posted on the subject was and I think that is a major difference.
The one nugget of information that I found, however, is that the injectible MTX causes less side effects than the tablets. I suspect that would be the next step if I can’t tolerate the the tablets.
I continue on my nest-building quest in anticipation of surgery and recovery. This weekend I’m going to build soups and other goodies to put in the freezer. I’ve already built Mexican Soup (grilled chicken, black beans, sweet potatoes, spicy tomatoes, cumin, cilantro) and White Bean with Fennel. Today I’m going to create Italian soup (kind of like minestrone but with sweet Italian sausage). Shopping and cooking are very hard for me since I’m on my feet, so I do it in spurts when I can — with lots of rest in between.
On a final note, it’s been over a week since I’ve had a drink and, for someone who enjoys her glass of wine at the end of the day, I’m amazed that I haven’t missed it. I’ve been drinking those wonderful flavored sparkling waters from Wal-Mart — no calories, no sodium, just refreshing flavor. I go through about a quart an evening which has also got to be good for me.
That’s all I know. I expect the foreseeable future to be fairly quiet. No more doc appts in the near term. I’ll update the blog as I take the MTX doses and if anything else develops.
Thanks to all who have offered their love and support as I work through this.
First of all, for my medically curious friends, I have the test reports back from Dr. Cheatum, my rheumatologist. I’ve posted them on this site and you can just click the link at the top of the page called “test results”. I didn’t want to take up room in the main blog or bore the non-interested readers with the nitty-gritty details. It appears that every joint except maybe my right elbow has some type of arthritic involvement. Yuk. At least we’re doing something to slow down the progression of the disease.
On the surgery front, I’m scheduled for the hip replacement on Monday, August 18 at Presbyterian Hospital of Dallas. I go in at 8:30 am and the surgery is scheduled for 10:30 am. I’ll be in the hospital for three or four days, probably getting out on Thursday. The good news is that the hospital has Wi-Fi. While I don’t expect to get any work done, at least I’ll feel like I’m still connected to the world.
I do expect to start working again, at least part time, from home by the following Monday, August 25. However, I won’t be able to drive for four to six weeks — especially since it’s my right hip that’s being replaced. Dr. Tucker said I could probably go back to the office for part of the day about week four if Jack would drive me there and back. I’ll probably be stir crazy by then. I’ll have some home therapists that come to the house and help me with exercise and check on my progress while I’m home. I’ll also have to give myself injections of blood thinners, since blood clots are a hazard of hip surgery. I’ve never given myself an injection before and I can’t say that I’m looking forward to learning. The injections are once a day for two weeks, so I ought to be an old pro by the time I’m done with them.
I also have to stop taking my Methotrexate for a while before and after the surgery. I’ve negotiated Dr. Tucker down from two weeks to 10 days. I have to call Dr. Cheatum’s office and see when they want to see me again given this turn of events. It will be an interesting conversation. Dr. Tucker says he and Dr. Cheatum disagree on whether you really have to stop the treatment. But since methotrexate can compromise the immune system, I’ll all for being cautious.
I’m also going to donate two units of my own blood. Dr. Tucker says that in my otherwise healthy physical condition the chances of my needing a transfusion are very, very slim. However, if there is any chance at all, I want my own blood. I need to do the first donation next week and then one two weeks later, to allow some time before surgery to build up my reserves again.
In the mean time, I’ve been accumulating the necessary accessories I’ll need for home recovery — like my walker and “reachy things” that help me pick up things without bending or stretching.
There are some neat calculator tools accessible through the hospital website. It says the average stay for hip replacement is 4.7 days at an average cost of over $11K per day. Fortunately it appears that my insurance will cover most of it and I’ve already met almost all of my deductible. Dr. Tucker’s not in network, but he’s promised to make me a deal based on what the insurance would allow if he was.
That brings us up to date. I take my second dose of Methotrexate tomorrow, so hopefully I continue to NOT have any side effects.
I’ll continue to update as we move forward toward surgery and as I continue my drug therapy for the rheumatoid arthritis.
Last night was the first does of methotrexate. We had tickets for the Summer Musicals (High School Musical) last night, so it was about 11:00 pm when I took it. I took it with my regular evening medications plus 1/2 a pain pill. I was really uncomfortable last night and actually took my cane with me to the Musicals. It really does help take the pressure off.
I wasn’t immediately sleepy, so we turned on the television for a while. About midnight I started feeling kind of “floaty”. The warning label on the medication indicates it can make you dizzy. I wasn’t sure if it was the MTX or the pain medication, but decided it was a good time to go to sleep and turned out the lights.
Then I tossed and turned and couldn’t get comfortable. The floaty feeling turned into that miserable feeling where it feels like you have ants crawling around under your skin (those of you with skin allergies know what I mean). I halfway expected to wake up with welts all over me today.
Fast foward to 3:30 am. Still not asleep. Still in pain, so I took the other half of the pain medication. I remember looking at the clock, still awake at 5:00 am, when I must have finally dozed off.
The good news is that neither last night nor today have I felt nauseated or otherwise ill from the medication, just the creepy crawlies in bed last night. I think the creepy crawlies are easier to tolerate if you’re awake and distracted doing something than trying to go to sleep. If it happens again, I may take it earlier in the evening, so maybe the creepy crawlies will have calmed down before I get into bed.
That’s it for now. I’m going to a conference this week so I’ll be on my feet a lot. That’s going to be tough on me. Then Thursday I meet with Dr. Tucker to schedule the surgery. I probably won’t post again until then unless something else worth reporting happens.
First of all thanks for your interest. I’m not sure if this blog is to keep all of you up with what’s going on as much as it is for me to document the journey I’m about to undertake, hopefully to better health.
As you probably know, after some time of dealing with weird symptoms and worsening joint problems I consulted with Dr. Don Cheatum, a really top-notch rheumatologist. After scores of tests and enough nuclear medicine and regular X-Ray scans to make me glow in the dark, he has diagnosed me with Undifferentiated Spondylarthropathy. It is a type of sero-negative Rheumatoid Arthritis.
The good news and the bad news is that I now have a diagnosis. If you know anything about Rheumatoid Arthritis (otherwise known as RA), you know there is no cure. The best they can do is slow it down.
The bone scan showed severe arthritis in my right hip, which is no surprise since I’ve been seeing an orthpedic guy and physical therapists for some time trying to get some relief. It also showed inflammation scattered all throughout my joints, but not yet severe enough that I’ve noticed them. So it’s good that we’re catching this when we are, because there’s no reversing the damage. (More about the hip in a minute.)
I’ve been taking the anti-inflammatory Mobic for months now. To this, Dr. Cheatum has added methotrexate, which is apparently an effective disease-modifying antirheumatic drugs (DMARDs). In higher doses it also is used to treat cancer. That should give you an indication of the potential side effects which include a suppressed immune system, stomach/intestinal distress, sun sensitivity, liver damage, lung damage, etc. etc. etc. In addition, I am taking folic acid to counter the side effects of the methotrexate, a prescription to help protect my stomach and hydrocodone to control the pain so I can sleep. Dr. Cheatum is extremely cautious about the diminished immune response. He wouldn’t let me out of the office until I had a pneumonia vaccination and has made me promise to get a flu shot this fall. I also can’t drink. All that luscious wine and wonderful single malt Scotches that I love are now a thing of the past. (Actually, my research indicates that I can have two drinks a month — but not on the days that I take the methotrexate.)
I take the methotrexate once a week, and I’ve picked out Friday evenings to give me the entire weekend to recover if it wipes me out. So tonight is the first dose. I’m going to use this blog to track my reactions and benefits to it. I looked briefly for some blogs of people like me so I’d have some first-hand reports, but no luck yet. A lot of people who have RA are no doubt old farts like me, but who aren’t technically inclined to do blogs.
Dr. Cheatum also recommended that I get the right hip replaced since it causes me so much pain. He “suggested” that I use my cane when I walk to help take pressure off the hip. Not sure that is going to happen. However, Jack has threatened/promised to get me a fancy walking stick with a silver wolf’s head handle. (Wow!) It does feel better walking with the cane, I just can’t get over the image thing.
I was really, really upset when I got the diagnosis. I was expecting it, or something similar, but something about hearing someone tell you that you have an incurable, disabling disease hits you like a sucker punch, no matter how prepared you think you are. That lasted for a couple of hours. Then it became a relief to finally figure out what was going on and have a plan to make it better. Also, Jack took me out to our favorite watering hole for one last martini and some decent red wine over dinner before I climbed up on the wagon.
That was yesterday. Today, Friday, I saw my orthopedic surgeon, Dr. Tucker. I brought him up to speed and told him that Dr. Cheatum had recommended replacing the hip. He’s a very conservative guy and looking at my last X-Rays, wasn’t convinced that we were quite there yet. So we took a new X-Ray. And he says, “Oh yeah, it’s getting worse, isn’t it.” So we’re at the point that the hip joint/cartilidge is definitely degenerating, but the bone is still in really good shape, which is the best of all worlds for hip replacement. Probably in a month or so (3rd or 4th week of August) we’ll get that taken care of. (Sometime after Jack’s birthday trip to Las Vegas, but in time for me to heal up for our Thanksgiving London trip.)
We discussed the pros and cons of resurfacing instead of replacement, and based on my age, activity level, etc. he’s recommending the replacement, but with high-impact implants. (Never thought I’d have implants ….. hmmm.)
The twist to all of this is that I have to be off the methotrexate for two weeks prior to the surgery (since it interferes with my immunity), which means that if I want, I can have a drink to celebrate Jack’s birthday when we’re out in Las Vegas for his birthday.
I’ll be in the hospital 2-4 days for the surgery, but not sure exactly how long I will be “out”. I have a friend that just had both hips done (one right after the other) and she was back to work/full activity in six weeks. The good news is that I can work from home. My fingers will still be able to type.
Dr. Tucker’s asked that I take a week to think about it so next Thursday I’m scheduled to go back to see him and, I’m sure, get everything scheduled.
That’s all I know for now. I’m still a bit manic-depressive about the whole thing. I am really glad to be able to do something to feel better, but if I had asked for something for Christmas, you can bet that Undifferentiated Spondylarthropathy wouldn’t have been it.
I’ll update this over the weekend after I take my first dose of MTX.