Today is 6 weeks since my LTHR

So today is the 6 week mark from my Left Total Hip Replacement. In those six weeks I used my walker for 1 day just to get into my house. I found it was a pain to use inside. I then was on my lovely Mobi Leg crutches for 2 weeks using both and on just one for another week. Since then I have been using a cane to wander long distances but I am not using any support at all in the house. 

I had a lovely chat this morning with another PVNS hipster about how this darn disease is making us both feel as though we are 80 instead of mid 40's. I hope that I made the correct decision with having the LTHR and I hope that it will solve my PVNS issue, but there is no guarantee that it is the answer. More research and testing is needed we need clinicians that give a damn about us.

The National Rare Disease Day is coming up soon 2/28/13 and we need to get it together and make sure that our voices are heard so we can pave the way for those who will be diagnosed in the future. 

So back to my recuperation saga....


The day after I arrived at home I got a call from a nurse who worked for a home care company. I knew that they were going to send an RN over to evaluate me and draw some labs and I figured that was all that I would get. Instead I got four weeks of both RN checks and PT visits. Andy the RN came once a week just to check my vitals and verify all was ok and Duane my PT came twice a week and put me through my paces. I have to say it was lovely having them come to me rather than having to go to them since we got a bunch of snow during that time frame an I was not interested in going out and potentially falling in the snow.


To be honest recovery is not a terribly exciting adventure. I am sleeping when I am tired, eating when hungry, knitting when in the mood, reading when I feel like it and just dinking around on the computer when I feel up to it. 

I had gotten behind on my survey results and I am now all caught up. I am including the link again for any who have not had the chance to fill it out.
This is specifically for those who have been diagnosed with PVNS.
 PVNS Questionnaire
There have been 88 respondents to the questionnaire and of those there are 8 people with PVNS in multiple joints. This is a much higher rate than most publications have led us to believe. I find it very curious that in both the PVNS is pants group on Facebook and the responses to the questionnaire women outnumber the men. All medical documentation I have seen claim that PVNS affects more men than women but this is not what we are seeing. Now is it because women are more likely than men to reach out to a group for support than guys do? Or are there truly fewer men?
I spent many hours over the New Year's holiday capturing the names of all the members of the PVNS is pants group and I plan to send each of them a letter requesting that they fill out the questionnaire. I am hoping that a direct invite will inspire them to respond. But first I need to upgrade my fluid survey account to one that allows unlimited responses. I currently only have the free account which is limited to 150 responses.

Once again I meandered away from recuperation!

I keep forgetting to mention how much better/different my hip feels now that it is bionic! I no longer have the grinding, popping that my original hip was doing. The groin pain is still there but it is different. Before it felt like it had when I had torn the labrum. Now it is sore like a pulled muscle. I am hoping that the groin pain will eventually go away. The entire top of my thigh and around to the outer 1/2 of were completely numb after surgery. I am slowly getting the feeling back in my thigh but it is taking quite a while. 

Because I have a history of anemia and my iron counts were low in the hospital I called my Hematologist and asked if they thought it was a good idea to come back in to "fill up my iron tank". The doctor agreed that it would be a good idea and I am getting 6 IV infusion treatments of Venofer which is an iron replacement.  It only takes about 15 minutes for the treatment but there is a delay every time because they don't mix it up until I am onsite. So all ttogether I am at the Hematologist's chemo clinic for about an hour every Friday afternoon.
Venofer



I started out patient PT last week with Chrissy who is awesome. I am going to be doing PT twice a week for four weeks and then will hopefully be all done. Some days PT is brutal but I know it is for the best and without it I could be in much worse shape.

Last week I decided to start walking and I know that on Monday I did way too much but it felt good to be able to move. I went to the Town and Country shopping center and walked one loop around the inside of the building. According to several elderly "mall walkers" it is exactly a 1/2 mile loop. Then I had my PT appointment and after that I made a trip to my gym to check on the pool and see if it has been fixed yet. All together it was too much and I paid for it the rest of the week though.

I also thought I was a great idea to start driving to see how my hip held up with longer drives so on Sunday I did 45 minutes just driving around the Dayton area. Wednesday I drove an hour and Friday I drove another hour. During all three drives the hip felt ok. Friday was the worst but anything over the hour is still not possible.I am very concerned that my new hip will not be up to the driving that I need to do for my job. I figure I need to give it 6 months from the time I go back to work to see how it holds up. If after 6 months I am not doing well I will need to reevaluate my career path.

On Saturday I decided to go to the Emergency Department to have then check my incision. It has popped open in a couple of places and I can see a stitch sticking out. The incision is a wee bit red and my leg is swelling  I did not think it was a good idea to wait for Monday. So I went and they did an Ultrasound to rule out a DVT or Deep vein thrombosis (blood clot). Thankfully there were none and that looks ok. There was a minimal amount of fluid under the incision but over all they felt it was healing well. I sent an email via MY Chart which is part of the Epic EMR (Electronic Medical Records) program to my Orthopedic Surgeon's Physician Assistant and she emailed back that they wanted to see a picture. After reviewing the pic they agree it looks ok and that I could clip off the stitch that is hanging out. I haven't done it yet because there are no rough edges the way it is presently and if I clip it then the suture would poke out. . . maybe that is a dumb way to look at it but I don't think it is doing any harm the way it is now. Plus I hate medical stuff like that and I won't be able to do the cutting my self no matter how simple it is! Yuck!

Today is Tuesday. . . and I have made it six weeks! I can't wait to see where this journey leads. 
 
 

Time flies while I gimp along!

It has been 2 months since I last wrote anything for this blog! So the last thing I mentioned was prepping for surgery and I had been in the hospital being monitored for my Heart rate dropping down into the 30's.

After coming home from the hospital I made an appointment with my cardiologist to see what he had to say about what was going on. He was not pleased with the news and scheduled me for a Lexi scan which is essentially a stress test that is chemically induced rather than exercise induced. That worked out much better because with my hip issue walking for any long distance just was not going to be happening.
 
I went to the office for my stress test and ended up failing that just like I failed my ECHO test. The RN who was running my stress test had told me it was ok to eat right after the test and that I should immediately get some caffeine on board because one of the side effects of the medication that is used for the Lexi scan causes headaches. Well for me it caused nausea and vomiting. Regardless I was feeling like crap. I was telling myself after this test that I should always take someone with me just in case I have another weird reaction! 

I got a call from my cardiologists nurse on the following Monday informing me that I had failed the test and that they wanted to schedule me for a Cardiac Catheterization. I was working in Defiance OH that day and the news that I was going to need a cath and it was the week before surgery freaked me out. Not so much the need for the cath but I was terrified that they were going to have to cancel my surgery and I would not be able to get in to have it done until January. So when the scheduler called me I was sobbing and was a basket case. Luckily they were able to schedule me for Wednesday of the same week so that was a relief.

I had my sister take me to the hospital for the cath and a friend and my older son came along to keep me company. I was a bit worried about having a procedure done at the hospital where I used to work. But it turned out to be a lovely day and loads of people popped in to say hello and wish  me well. They took me back to the procedure room and did the cath through my radial artery and hip hip hooray I have NO blockages!! And my surgery could go ahead as planned.


Surgery day 12/4/12 both of my children and my mother decided to accompany me to Columbus for this surgery. When I had my arthroscopy mom was in CA visiting my sister Laura. And my boys figured that my sister and friends could keep them posted, both guys thought the updates were too few and far between and they both worried so this time they came along. They learned that hanging out at the hospital in the surgery waiting room for HOURS is boring! And that the few and far between updates they got last time were exactly what they got sitting in the hospital. 

I had to be there around 9:30AM for some additional Xrays and then off to surgery to register. It took a while before someone came and escorted me to the pre op area. Of course the time in pre op last's forever and it seems like you are never going back.
My nurse and I had an interesting discussion about allergies and pain and how a simple food allergy to chicken of all things had caused her to be almost house bound. She told me about a place in Columbus called Nutrition Results that does intensive testing and she said without them she would not have been working that day. http://www.nutritionresultsorder.com/

Both the PA Tiffany and my Surgeon popped in to say hello and get things signed and ready to go. I really am not sure what time I went back to the OR. I transferred to the  OR table and sat up on the side chatting with the CRNA about her Anesthesia machine and telling her about the one our company has. . . and then nothing.
I had a spinal as well as general anesthesia and was completely out before I laid down on the table! (That is the same way they did the last surgery but they put in the spinal in the pre op area the last time).

I only have vague memories of waking up from surgery and being wheeled down the hall to my room and seeing my oldest son wandering the hall with my crutches. Shortly after getting settled in my new room the family came traipsing in and once they knew I was ok younger son was ready to go home and sleep! They visited for a little while and then headed back home.



Recovery 12/4/12 to 12/6/12
I spent 2 days at the hospital and yes I was up and walking with a walker the very next day. The first night was rough because they gave me an antibiotic that I was sure I was allergic to but had only had one time before. Regardless it made me very nauseated which made it hard to keep my pain under control. Once they stopped that antibiotic I was much better. For some reason my magnesium levels were low and they had to give me magnesium both days. I need to get that checked again since surgery and see where I am now. Low magnesium levels have been proven to be the cause of joint pain and I hurt all the time in many different joints not just my hip.

I worked with PT the morning after surgery and they were impressed with how well I was moving. I was motivated to get to the bathroom since the nurse had taken out my catheter earlier in the morning and I was desperate to get up and pee. I made many treks to the bathroom on my own after they were sure I could do it alone. Unfortunately the walking was more successful than the peeing and I had to have a catheter again later in the day. I think the spinal makes my bladder sleepy and I just can't pee! The same thing happened after my Hysterectomy and my Arthroscopy. Oh well such is life.

My older son came in my van to pick me up on the 6th. Mom does not like driving my van and I knew riding in her Element would not be comfy, so Andy agreed to drive up in my van to fetch me. We stopped at the Walgreens in the basement of the hospital to fill my prescriptions before heading home. And then he loaded me up and headed out. We stopped half way home at the rest stop and I gimped my way to the restroom. I stop at this rest stop all the time and never paid any attention to how freaking far it is from the parking area. Sheesh that was rough but necessary since I was hurting from sitting and I needed to move.
We got home and I got settled into my bed and was exhausted from the journey!!!

It is 3:30 AM and I am finally getting tired again. More later in another post!!!!