- The antibiotics are beating back the infection in my right leg. A week ago the infection had encircled the leg and covered about 80% of the lower leg. Now the circle is broken and it is about 20% of the leg. Remarkably if the dog brushes up on it, a kid hits it, or if anything falls on it, it still falls on the painful part of the leg.
- A lot of you have asked what the doctors are doing about it. The don’t really know why it the infection keeps reoccuring. About 10 times now I have been declared cured and within days of having absolutely no trace of it for weeks, it comes back when I come off the antibiotics. Each time it comes back with more force, faster, and harsher and I get way sicker in the process. In all of the opinions I have gotten, the doctors keep telling me that this isn’t supposed to happen.
- I still feel like death. There is a feeling that the infection has done long term damage to my body, especially the last time. Mentally I feel better. The fever takes a weird mental toll on you in that it is exhausting to be either freezing and trying to get warm or burning up and trying to break the fever and stay hydrated. It’s all I was thinking of for several days. Despite staying in bed, I was exhausted and not sleeping. I was too tired to even read anything.
- I try not to get angry or frustrated over it but I had some choice words for a doctor who was reminding me that my core fitness needed improvement. Umm, i have been told to stay off my feet for 14 months now, I barely go out and of course my fitness is going to suck.
- I was going to take this week off my StarPhoenix column to recover as I had nothing left in the tank but I read a great Sports Illustrated column on this years NCAA football season and how he had predicted how Ohio State would be an offensive juggernaut. It made me think back to all of the predictions that made so much sense in the pre-season of any sport and how few played out that way. I had some fun predictions for 2016 provincially, municipally and for the Riders. Prediction columns are fun, where else can I talk about Eric Olauson and Bill Belichick in the same space?
- A lot of you know that I have a passion for word processors. With a new Acer E-11 Netbook for Christmas, I am trying out a few right now. I just installed Corel Office which is a slimmed down version of WordPerfect, Quattro Pro and whatever they use for presentations and I am trying a full blown version of WordPerfect X7. I’ll let you know how it goes.
- Speaking of word processors, with my beloved Windowns Live Writer being discontinued by Microsoft, there is a new open source version called Open Live Writer. Microsoft has allowed some of their code to be open source (this is a big deal) and it is being developed and upgraded by a team of developers. The biggest difference is that Open Live Writer is compatible once again with Blogger.
- I wish someone would tell Jeb Bush that it is time to pull the plug on his campaign. It’s over Jeb.
- The lack of star NDP candidates for the upcoming provincial election tells me that the NDP knows that it isn’t going to win. Two relative unknowns in Saskatoon Fairview and Saskatoon Meewasin also tell me the same thing. Cam Broten may be Premier in 2020 but it seems like the goal is 20 seats (and be a government in waiting in 2016).
- Speaking of Saskatoon Meewasin, has there ever been a MLA with a lower profile then Roger Parent. No website and he even uses a @gmail.com email address on his bilboard ads. I can’t even find him in Google News (you search for “Roger Parent” and “Saskatoon”, he isn’t there). He is like the Saskatchewan Liberal Party of the Saskatchewan Party caucus. I would say this about a New Democrat, Liberal, or Saskatchewan Party MLA but if you are going to do so little work in being a MLA, you don’t deserve to even win a nomination or be elected.
- I saw Darren Hill beaking of at Rona Ambrose about this one Twitter but I agree with Rona Ambrose and that is the Liberal Party should have a referendum on changing the way we vote. Moving from First Past the Post may be the right thing (although I disagree with it) but it is a big of enough change to our democracy that we should have a say in it.
- A couple of things about Brad Wall. More and more his government reminds me of the Grant Devine regime with it’s dependance on mega-projects to spur the economy. The stadium in Regina, the Children’s Hospital (which we don’t need nor do we have the population to support) and the carbon capture project. Huge projects that are costing a recently struggling economy a lot of money. I might be okay with this but I don’t see a plan from the Saskatchewan Party on how to deal with low commodity prices other than complaining ot the feds (like Grant Devine). Now with no budget on the horizon before the provincial election and a struggling economy, it gives me an uncomfortable feeling that things are worse than we are being told. Of course in the end, Brad Wall might not be here much longer and may have his focus on the federal Conservativ leadership race.
- I am suprised by the Cleveland Browns inability to acknowledge and get help for Jonny Manziel being an alcoholic and having a drinking problem. There is a difference between being a party goer and what Manziel is doing. I am also suprised by Manziel not being able to control his friends cell phone’s. You don’t think Tom Brady’s friends have cell phones? Yet you don’t see those kind of videos appearing of him. In fact with Tom Brady’s Facebook, he has done an amazing job of controlling what people see of him.
- This is one of the most damning things I have ever heard someone say of a coach. Despite that it is what destroyed Josh McDaniels, Bobby Petrino (multiple times) and how many other countless coaches. Football is a people business and while we talk of the genius of coaches like Belichick with x and o’s, it is their ability to manage and lead men that makes them so impressive. Not just players but assistant coaches, support staff, and even the guys who take care of the field and bring them all together. Chip thought it was X and O’s. He was wrong.
- When did Facebook rants become news? Ryan Meili ran twice for the leadership of the NDP, lost both times and would never run for his party again. When he runs provincially or federally under someone else’s leadership, I’ll take this more seriously but for now I don’t see this as big news. I agree that Broten is taking the party to the centre, it’s worked well for the NDP in the past under Romanow and Calvert but it has been a disasterous move for the party federally and provincially elsewhere other than Alberta. It will be interesting to see how it plays out.
So the good news around here is that last week the infectious disease specialist I am seeing about the infection in my leg declared that the cellulitus been cured and was good to go. I was pretty excited since the infection had been there since 2014. I even went out and celebrated.
He did say that if he was wrong, I would notice a fever returning. That’s no surprise as that has been what has happened every other time the infection has been “cured”.
On Saturday I had plans to go out to a Christmas party but I wasn’t feeling that great so I decided to go to bed early. I woke up with horrible chills. By the time it was all said and done, I was wearing a toque, gloves, and had a dozen blankets on me. Since Wendy was sick as well, I was hoping it was just the flu.
Sunday I went into work and was burning up. Sweat was pouring off me. Wendy came and got me and took me home. The chills came back worse then before. Wendy pointed out that I was delirious at one point and I was either burning up or shaking violently with the chills. Around 10 p.m. I got up and then fell down the stairs. Wendy said that I had blacked out. As I was laying at the bottom of the stairs in a fair amount of pain I was like, “Really, this is getting stupid”. I also managed to crack a rib.
It was while laying there that I saw the tell tale red streaks going up my ankle towards my knee. The infection was back with a vengeance and was bigger, redder, and giving off my heat than ever before.
The specialist had told me “self-initiate” treatment (start taking the antibiotics again) and call his office. I gobbled down some antibiotics and settled in for the longest night of my life. I have never been so cold. Every blanket in the house was on me and I still wasn’t warm. I thought about heading to RUH emergency but I couldn’t see myself sleeping there and if I am going to be horribly uncomfortable, I might as well be at home.
Wendy got up and called the specialists office today. I know some specialists are hard to deal with and aloof but I have met several nurses who have dealt with mine and they think the world of him. While I would prefer not have to see him, he is always pleasant to chat with and super thorough and accommodating. His current nurse called right back, reminded me to “self-initiate” my treatment (I love how doctors and nurses talk) and made arrangements for me to see him. I have never been so happy with how I have been treated. Of course their urgency is because I am so sick.
So I’m back on an obscene amount of antibiotics for now which work while I am on them. The next step is to find a solution that will help me long term and finally kill this thing. I have heard people make MRSA jokes and comments. There is nothing funny about it at all. It’s hard to believe that it has been infected since November 2014 and they still can’t kill it.
Today I went back to the future… well I went to the ambulatory care unit of RUH which is still awesomely decorated in a 80s color scheme.
It’s the same old, same old. My ankle is still infected and after 10 months, they still can’t get rid of it. They can fight it to a stalemate but can’t actually beat it.
My appointment was at 10:30. I had hoped to be out by 11:30 as I had some things I wanted to do. Since I never saw the doctor until 11:45, that wasn’t going to happen.
What did happen is that when they took my pulse when I was admitted, it was 226 bpm. They kind of freaked out. I then started a bad fever and started to get the chills, all while casually waiting for my doctor. This is what happens when my antibiotics are done. I am fine while on them and then within a day or two of being off them, I get violently ill. Horrible chills, mind numbing fevers until I get delirious, double vision (from the high heart rate). Then when I am on the antibiotics, life is good and people say that I am fine. Then the antibiotics run out and I get extremely sick.
Since this happened while he was seeing me, he ordered a bunch of immediate tests and seemed happy it was happening as it was the ideal time to do these tests. I am glad the specialist was happy but I would have been even happier if he said, “you are cured”.
So I go down the mall at RUH to “Tests” and I am kind of excited about this. I have crappy, hard to find veins. The kind that Gamma Dynacare can’t get blood from. They try three times and say, “never come back”. At the hospital they keep digging and digging. It may be painful but the blood comes out. I sit down in the waiting area and they have some sort of The View clone on the TV. If I was on life support, I would unplugged myself to avoid watching it.
I get called into the lab and the lab tech engages in a mighty struggle with my veins but finally I start to bleed. I explain to her mid struggle that this always happens and I can handle the pain. I’d rather watch her needle dig around for a vein that watch whatever was on the television waiting room. As I get up to leave, she says, “That was a struggle. My next step was to take you to the lab and cut you with a knife down there.” I am pretty sure she was joking but after the struggles that I have had in the past with giving blood, I’d have gone along with it.
The next fun part is always getting my prescriptions filled. The last time I went, there was a new pharmacist there. She looked at the prescription and freaked out and didn’t want to fill the prescription. Her assistants (who I have dealt with for years) look over and go, “No that’s accurate, he’s kind of messed up.” They also recognized the specialists name and were fine with it. This time the was more concern than freaking out. As one said, “You’ve been on a lot of different kinds of antibiotics”.
I am not sure if the latest antibiotic is going to work or not. It has beaten back the infection a bit so we are going with it for three months to see if they can break the stalemate. When I started this, they gave me a prescription for three weeks and that was a big deal and it was 5th the dosage. Now it’s like five times the amount and three months.
So when Premier Brad Wall mentions escalating healthcare costs for the reason why taxes need to increase in the province, I’m the reason.
Last week found me in the ambulatory care area of Royal University Hospital. The part hasn’t been updated since the early 80s. I felt like the dress code should include feathered hair and mullets for all of the staff and doctors to keep the vibe going. Not only is the area still decorated in early 80s decor, it looks new. Not sure how RUH maintenance staff pull that off.
I was off the antibiotics that keep me functioning when I went and saw him. The night before the infection came racing back and covered my lower leg and ankle. I had fevers and chills all day at work and I could barely make it up our stairs to get to bed. Wendy came home and freaked out and wanted to take me to emergency but I just wanted some sleep and I wouldn’t get any in ER. I was pretty confident that I wasn’t going to die and I found it unlikely that a night ER doc would know how to cure me. So the next morning I rolled out bed, went to RUH, realized they made the parking garage too small once the new Children’s Hospital opens up, and admitted myself.
The specialist grilled me a while and affirmed part of my treatment but also brought up that no one has done even the right tests yet. He also told me that the antibiotic I was on was the wrong kind, not strong enough and in the long term has made things worse.
So I am on a new one. The advantage of the old one is that it kept me out of pain. Not being on one means that it is incredibly painful and while the new anti-biotic is more potent, it takes time work. When I am off the anti-biotic, the infection spreads like wildfire in a day. Yet when I am on the anti-biotic it takes a week to beat it back. The big change is that the pain in the leg is just overwhelming now. It was bad but nothing like this. It’s getting better as the redness goes down but there isn’t a part of my right leg that doesn’t scream in pain with every step.
The specialist did have a very technical discussion about my leg which I was fine with. I asked questions and he explained them. I felt better at the end of the appointment. He did throughout it keep saying, “those little bugs in your leg” which made me smirk each time. I would have also accepted, “that gross thing that is eating your leg” as another description. I felt better when I left which was an improvement over the other specialist appointment where I was told to quit my job and that I wasn’t serious about getting better because I wouldn’t quit my job.
So there you go. Leg is still messed up and for this week at least, got a lot worse. Of course the good news is that it looks like it could start to get better.
Well I survived my appointment with the surgeon with all of my limbs still attached. A lot of you were asking questions so here is what I know.
- The treatment with the wound clinic has been ineffective (I knew that… all they did was change a bandage and lecture me most days for things out outside of my control).
- The test results show that the infection is taking a serious toll on my entire body. Part of the body is fighting on, other parts have given up. It does explain why I go to work, come home and nap until the next morning. It also explains why I haven’t been that social this year, I am so tired all of the time.
- Part of that is that I am probably now a Type I diabetic. I know this is warped but there has been so many other serious things, this doesn’t seem to be a priority for anyone. The infection drives up my blood sugars which exhausts me. Part of the problem is that to figure out what to do with the diabetes, the infection needs to be brought back under control.
- Treatment is going to be long and unsurprisingly, expensive. The treatment the surgeon wants to try isn’t covered under healthcare in Saskatchewan. Some basic research yesterday shows that it is in other provinces but not here. That makes sense because it works and is faster than what we cover in Saskatchewan. I can’t remember if I file this under lean or the New Saskatchewan. Either way it’s ridiculous because…
- Everyone I deal with at the Saskatoon Health Region seems shocked and bothered that I am still working and not laying at home on my bed waiting to die. Believe me, every single morning I was wake up and say, “I feel like death” and “I just want to stay in bed” but staying in bed causes a lot of pain while being up and about does not. So I try to get an appointment where I can get treatment and then go to work. I get told, “well the seniors like those early morning time slots”. I understand that being retired is hectic but seriously? I try to get treatment after work and am told, “We don’t offer that treatment in the evenings.” The best is when I am scheduled for a treatment and am told when I get there, “Oh, we only do that in the morning and at a different facility.” Or they don’t call me but insist they did. Or I show up at appointments and am told that I cancelled it. It is not a lot of fun dealing with CPAS and it is even harder when you are trying to keep working….
- I get asked all of the time if they are going to take my leg. I don’t know yet. Some doctors are more optimistic then others. What we do know now is that antibiotics aren’t killing the infection. When I am on antibiotics, the infection is at bay but as I saw this week, the infection literally moves up my leg in 24 hours after I am off it (I am back on them now). I also am told that there will be surgeries in my near future and there will be a lot of them.
- So that killed the hope of hiking to Grey Owl’s Cabin in August. I know this is stupid but that makes me incredibly sad. You have no idea how badly I wanted to take that trip with Wendy, Mark, and Oliver. The new treatments were going to start today. Since we had planned to leave for Calgary at 6:00 a.m. on Thursday, those treatments are starting next week when I get back. Wendy and I had talked about her taking the kids to Calgary herself if I needed to stay behind but I am hopped up on antibiotics that will keep me going until I get back. Without them, I was told I would have been hospitalized in Calgary which is why I was nervous about going. As the doctor said, I have a long and hard road ahead of me, a vacation right now is a good thing.
- I appreciate the advice that EVERYONE is giving me and that is that I go to the Mayo Clinic. Umm, I have about $200,000 equity in my house. Wendy and I have looked at re-mortgaging to do this but to go down, it would take every bit of money we have and then what happens if it doesn’t work? I bring up the costs for just a week of treatment and people’s jaw drop. Let me be blunt, the Mayo Clinic is for the wealthy. Wendy and I are very middle class. Throughout this I am realizing that people see the Mayo Clinic as their last hope. If everything else goes bad, there is always the Mayo Clinic and “those” doctors can help you. They may be able to do so but only at a tremendous cost that most of us can’t afford.
After being assured that my latest batch of antibiotics would work on killing the infection in my leg. Taking the antibiotics via IV was supposed to give me a deeper penetration and therefore kill the infection fully. I finished my last batch of them on Thursday (and out came the pic line) and things looked better. Last night I told Wendy that I could feel the infection return. This morning I could see that it had and it is currently moving up my leg.
Tomorrow I have a doctor’s appointment with a vascular surgeon and we will talk, umm, options for what to do next. It’s not going to be a fun appointment.
My white blood cell count is normal which means that my body has just given up fighting the infection. My protein count is supposed to be 7. It’s 150.8 because of the infection and inflammation. Not only that but the ulcer on the bottom of my foot is bleeding horribly this morning after months of improvement.
So I am off to City Hospital for treatment of the ulcer. Then I am going to head downtown to shoot some photos and deny what is happening. This afternoon I am off to Don’s Photo where I am going to calibrate some lenses for Mark and I before returning home to battle the coming chills and fever all night.
I hate this. I just want it to end. Hopefully I have two legs at the end of the process.
After three days of sleeplessness, fevers, and chills I went back to St. Paul’s Hospital. The cellulitis had gone from my ankle up my calf and almost to my knee. As of 5:00 a.m. this morning, the infection was winning.
So the plan was to be at St. Paul’s by 6:00 a.m. We walked in, saw triage and was given a bed right away. I was quite pleased with how fast this was going. I expected to be home by 10:00 a.m. Since the teaching is done at RUH, it meant no interns, no residents and just a doctor.
So the nurse saw it, gave an expected course of action. The doctor saw it, affirmed her course of action. He ordered blood work. The blood work came. I was rolling along.
The white blood cell count came back as normal. Which was kind of odd since I have this chronic infection. The C-Reative Protein test came back. I did well in it. It was supposed to be around 7. Mine was 150.8. Beat that folks.
So they gave me a dose of IV antibiotics and then I wait until 3p to leave. I had to see Home Care to get me to agree to give myself an IV. Then they made me sign off on giving me my own medication via IV. Then they taught me to give myself medication via IV but not really because I already had it. I did get an instruction guide.
Oh yeah, they put the IV into my hand. Not only do I look like a hardcore addict but you type with an IV in your hand (of course I can inject heroine into my hand if I ever decide to take up drugs).
I think that was the biggest frustration, I asked them several times to keep the needle out of my hands for work and they stuck into my hand because it was the easiest place for them to jab a needle. Actually they seemed amazed that I would be working and not at home. Like I have written before, some of us need to work, especially with an illness that has no end date right now.
Then I was allowed to go to City Hospital where they gave me boxes and boxes of medication. I have more gear then a safe injection site (and with my hand, I look the part).
- Since the start everyone has been saying that my leg is a vascular issue despite the vascular tests being largely normal. I have been saying it is an infection. It’s weird, I have had a few doctors look at my leg closely and none of them have thought it was cellulitis when it clearly was. I am sure this happens lots but doctors appear to “thin slice” to use Malcolm Gladwell’s term.
- I have a problem with what the hospital charge for parking. It cost me $18 for a day of parking and it wasn’t like it was I was there for a party. That is obscene and taking advantage of people.
- Here is something else that blew me away today. Everyone in emergency today was on a waiting list for a specialist and their condition had deteriorated to the point where they were sent to the E.R. (we had time to chat).
- I am not really that comfortable injecting myself with an IV medication everyday so I asked if I can come in and have it done. Nope. My choices were inject yourself or have a nurse come in on their hours (which doesn’t work for my schedule) and they can do it for you. I can’t go to a clinic or hospital to have it done. I just want a time and I’ll be there early but nope. I don’t know why this can’t be done. So this is patient centric care in Saskatchewan. Do what you aren’t comfortable doing because it’s cheaper and you have a piece of paper.
- Cellulitis hurts. Badly.
- I don’t know if this is going to work. Every treatment they have tried so far “is going to work”. It’s been 8 months and I am getting sicker.
seven eight months now, I have been battling this infection in my foot. It has gone from a part of my foot into my ankle, my skin (cellulitis) , and now my bone marrow. They have been pumping me full of antibiotics and then to keep from developing colitis, they give me probiotics. If you have ever had probiotics to go with your antibiotics, your quality of life goes way down. They are just there to minimize the worst of the what the antibiotics are going to do to you. Even my pharmacist would get freaked out at what I was being prescribed. The antibiotics make some progress but at the end of the day, the infection comes back worse when they are done.
It came back yesterday and I was stuck with the worst fever and chills cycle that I have ever experienced. Then today I topped that fever and chills cycle. My whole body aches from it. That was my last two days. I spend hours trying to get warm and then the fever goes the other ways and I have a hissy fit trying to get the covers off of me and so I can cool down. (no one throws a hissy fit like me when I am burning up and I have seven blankets on me)
As a diabetic, this is not a lot of fun because it plays havoc with my blood sugar levels. Twice in 2015 my blood sugar has gone so high that I have acne on my hands as the body is trying to figure out what to do (yeah, that was gross). As one doctor said when he looked at my blood sugar numbers, “oh fuck”. It’s so far down on the list of things they need to fix that they haven’t really made any progress in dealing with it. Of course it means that a combination of fighting this infection and the high blood sugar levels means that I am exhausted all of the time.
Of course part of the treatment is with CPAS. If one department needed to reorganized and changed as part of lean, it is them. Wendy goes to every appointment with me because she helps me with this wound on my foot. This should be straight forward but it never is. Several times I have been given appointments for things that don’t happen on that day or even that facility. Other times they call me and say, “You had an appointment”. Wendy and I are saying, “umm, no one said anything to us about this.” Then we get lectured because we show up for appointments written on an appointment card (and confirmed) but don’t show up for appointments no one tells us about.
Then when I am there, I get lectured by nurses because I haven’t had this test done or an appointment yet with a specialist. You know I tried to walk in and ask for a MRI myself and that didn’t go so well… I don’t even know what to say (which as we all know, is rare for me). I’m the one caught in the cracks of a slow system, you don’t think I want this resolved?
I wish I could say it wasn’t painful but it is. The dog licked my leg this morning (creepy, I know) and I thought I would going to pass out. The one saving grace from all of this is that it is summer and I can wear short pants (also trying to get a job at the PMO). I have had jeans on lately and the pain was horrible. It’s not like I don’t have a high tolerance for pain. I have had neuropathy for years and cope with it without pain killers but this is something else.
I wish I could say that I have faith in our Medicare system but I don’t. 8 months. Of course my mother lost her leg in a very similar way. It just took a couple of years. The weird thing is that this just seems normal here and from my personal experience and family history it is.