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.
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.
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