In 2018 I needed surgery which with a history of a blood clot means you have to take extra precautions. With a history of a saddle pulmonary embolism that should have killed you, no one knows how you are still alive…you have to take a lot of extra precautions. Honestly I could tell the very arrogant surgeon wasn’t very interested in doing the surgery because I am considered high risk, but surgery was the only option to fix the problem. Trust me when I say there were no other options. So I did all the necessary tests, blood work, pre-op clearance visits with all my specialists including hematology, and had an IVC filter placed…again… IVC filters are a useful tool to help catch blood clots that come up from the leg, however they are not without their own risks.
IVC filters are placed by either going up the femoral artery in the leg or going down the carotid artery in the neck. When I got this one placed…there was a bit of a hiccup and malfunction and they ended up going both directions…lucky me. My hematologist likes them to stay in for no longer than 10 months. When you keep on in longer than 10 months the risk of scar tissue build up increases which means they have to be cut out of the vena cava and that can lead to a whole other list of problems including death…because why not?
So I go for the first surgery in May, the very arrogant surgeon tells me its no problem in and out, blah blah blah he’s the best etc etc etc…. He does the surgery faster than he had told me it would take which *note to self is a bad sign*… He states that the problem was not as bad as he thought it was, and so it didn’t need as invasive surgery as was first thought. Now…I’ve already had 2 other doctors confirm the orginial diagnosis that arrogant surgeon made..but he was the one that just went in and took a look…but a month later I am not showing any signs of healing… so arrogant surgeon says its because I’ve been on blood thinners, and other drugs and I’m just slow to heal give it four more weeks… four more weeks comes and goes… I’m not healed…. Well arrogant surgeon in the meantime gets fancy new job out of the area..which is probably good for arrogant surgeon because when I find out that I need to have surgery AGAIN I am more than a little upset.
So I am passed off to one of his colleagues who takes one look at me (and obviously not my chart) and says I think it’s *original diagnosis* I said so… did arrogant surgeon lie when he said after surgery that it wasn’t original diagnosis but second diagnosis? So new surgeon realizes he has majorly stuck his foot in mouth and decides to watch healing for another month to make sure he’s right before..scheduling me for the EXACT SAME SURGERY!
As you can probably guess a month comes and goes and I have made no change, so surgery is scheduled. New surgeon who by the way has WAY better bedside manner than arrogant surgeon, does the surgery, fixes the problem and I heal in about 6 weeks. I FULLY heal….As in it’s been a year and a half and no more problems….
I also learned my lesson that arrogant surgeons are not always the best surgeons.
I was encouraged to start this back-up. There is a lot to fill in the blanks, so I’ll do current evens and flashback posts to try and fill in. So it might feel a bit like the Matrix for a bit, or the Twilight Zone, but eh with COVID-19 I think that’s slowly becoming our new normal.
I a telemed appointment this week to get a medication changed, and then I got a call from a different doctor that they were cancelling my injection this week. I was expecting them to cancel my injection because they are protecting the most vulnerable patients. I respect that they are limiting exposure during a pandemic. So much is unknown about how the virus is spreading, how to treat, and how our lives are constantly changing.
For people dealing with chronic illness, somethings have been easy to adjust to because they often don’t get to leave their house due to their illness. The problems have been worrying about if they become infected will their pre-existing conditions make the infection worse? They also worry about if they can get certain drugs because some are experiences shortages because they are being used for COVID-19 patients for either directly for the virus or for the aftermath.
So let’s stay positive, and help each other as we get through this.
I know it’s been awhile. Things had been chugging along pretty well. Pretty much follow up appointments only. I had allergy testing that was a total bust which was funny not funny. I got some good bruising from the flying monster (okay insect) portion. I was found not to be allergic, which most people would be happy about. I am happy about the flying monster portion that’s cool. I can be a little less worried the next time a hornet flies by me and thinks I’m a rose, but the regular testing we don’t think came back right. The doctor was even confused by the results. I have had allergy testing before, this was my 4th time and every time I’ve had a long list of allergens. This time 1 came back positive. Which does not match the symptoms I am having. So back to the drawing board on that one.
So about a week ago I had to be put on 2 antibiotics. Well one was for 7 days and one was for 10 days. I finished the 7 day one and I was on day 8 of the 10 day one and I noticed my ear was super red..just one. I thought how odd…my ear didn’t hurt, it was just hot. So I showed my wife, she agreed it was odd, but neither of us could figure out a why. Next morning I wake up and I have a rash now covering my entire body. So I look at her and go oh I think I figured out WHY my ear was red….so I went to the ER. Doctor took one look at the rash and asked about new medications and said BINGO! You are allergic to ______.
ARE YOU FREAKIN’ KIDDING ME??!!! I was on the medicine for 8 days just fine and then this happens? Apparently with this medicine it is common to have a later reaction because it has to build up in your system. So needless to say I am off that medicine, it will now be in all my charts, and I informed my pharmacist. So this was definitely a case of the cure was worse than the disease. So of course when you have an allergic reaction of this magnitude you take oral steroids and then supplement with antihistamines. My history with oral steroids is not a good one. They make me hungry! So I am going to try very hard not to eat everything in the house in the next week while I am taking them.
I am glad that the reaction is clearing up, I have a follow up with my primary care doctor set for this week. I know he will be so glad to see me again this week. I think at this point I need to just make a standing appointment. It’s been a rough couple of weeks for me. I figure now I am on the upswing so things should calm down. I also need to make a couple of calls because I think it’s time to schedule a couple of follow up appointments.
Fall is here, it’s getting cooler. Hoping to get outside and sit and enjoy the cooler weather. I like fall before it gets too cold for my hardware, it’s a fine balance for me. Enjoy your day! Remember life is short…eat dessert first!
So I was cleaning out some boxes and I found some old blood work and lo and behold I was tested for Factor V about 10 years ago. Did I remember this? NOPE! Apparently my doctor felt I might have a blood clot disorder. Was he on the right track? Absolutely! Did he do enough testing? No, was this his fault? Absolutely not! The clotting disorder I have is not routinely tested for. Had I remembered that I had been tested for Factor V this would have really helped the doctors back when I had my massive blood clot, but such is life.
So my filter was removed, the allergic reaction has healed, but I still have some research to do on why I had the reaction. Got to love allergies! You got to take life one day at a time!
I was trying to be more active, and in return for trying to be active my pain level started increasing. My hips started hurting, so I ended up being benched! So much for trying to be more active!
I also am finding that with my new weight loss…my knee braces are getting too big again….yes..I just got new braces and these are already too big…oops! So I might need to get new ones again which is a good/bad problem to have!
Life is always an adventure so set sail and enjoy the ride!
So in order to get my IVC filter out I had to come off my blood thinners, go on a Lovonox bridge, and then be on a combo of my regular blood thinners and Lovonox shots…easy right? So I go back to the clinic to be checked and my INR was LOW. As in risk of developing a blood clot low. *Insert unhappy face* So now I’m looking at the pharmacist and she’s looking at me trying to figure out what to do. Well the first thing is to call my hematologist’s office to get a re-authorization for the Lovonox shots because OF COURSE I am out of those. Then the question is how much of a booster dose(s) to give me of my normal blood thinners to give me and when to re-check. Well then the 2nd problem comes in…this weekend is Memorial Day which means the clinic is closed Friday and Monday for the holiday. So we couldn’t check me in the right time frame.
Blood thinners are funny things. The way they work is they slow the time it takes for your blood to clot. So it takes a couple of days for a booster dose to take effect. So if they check me too soon and then up my dose they could then give me too high of a dose, but if they wait too long then I could stay low for too long and risk developing a blood clot which is the whole reason I am on the blood thinners in the first place. If I still had my IVC filter in we wouldn’t be as worried because I would have that protection there, but it was just taken out! Oh isn’t this Murphy’s law?
So the hematologist’s office said for me to come in their office for a check on Friday so we could see where I am at. So we got everything straightened out, but it’s frustrating to say the least! I really wanted things to be a-okay! I mean I really didn’t want to have to continue giving myself shots. I mean I am pretty sure no one voluntarily gives themselves shots unless they have to!
I know my INR will come back up, it’s just taking a little longer than normal. I figure this is just another life lesson I am supposed to be learning, I mean there are worse things in life. Of course if I have any signs of clots I am to go directly to the ER DO NOT pass Go and Collect $200!
So I finally got to get my IVC Filter out this week and I tried to do it with just lidocaine, but the powers to be had me under conscious sedation. Which means I was awake during the procedure, but I was giving some sedation medication. I really did try to convince the doctor that I didn’t need any sort of sedation, but he felt with with the fusion and medical history it would be better.
So most people are like GIVE ME THE DRUGS!!! I had several friends tell me I was crazy for not willingly accepting sedation and jumping at the chance to be sedated while they were doing this procedure. Well you see what had happened was…no seriously at this point I was so relaxed I was about falling asleep BEFORE they gave me the drugs which meant that once they gave me the drugs I was really falling asleep on them. The nurse had to keep me awake which I kept saying to her I’m awake..sort of..and she goes the drugs are working. I go I was half asleep before you gave them to me!
I also realized when the put me on the table that my shoulder was not going to be happy. I did not think about the fact that with my frozen shoulder that having to hold my arm in a certain position was going to be irritating. So we had to move it around until I found a less irritating hold and then that’s where we left my arm for the procedure. Thankfully removing the filter is a short procedure.
We talked before everything started that it should be an easy in and out. The only thing that would cause it to not be an easy in and out would be if there was a big blood clot in the filter and then he would have to leave it in because it would be dangerous to remove it. If the filter was tilted and he could not easily grab it, we might have to stop and try with a different approach or if the filter and the vein had attached to one another, which shouldn’t have happened because I had mine in for such a short period of time. All of these things I was well aware of because I had discussed it with my hematologist and his PA.
Having discussions with the doctors ahead of time and knowing what you are in for makes these procedures a lot easier. Being able to sign these consent forms that list death as a possible side affect because unfortunately any time you have a procedure like this death is always a possibility- it’s easier when it’s all been explained and you know what you are in for. The filter removal was simple and straightforward. We got it out and now I am oil filter free! (Inside joke) I do not need a new one. If I have another surgery it will be discussed again if another one should be placed.
I don’t mind giving myself shots. Sure I would much rather to NOT have to give myself blood thinner shots, I mean I’m not no one readily signs up to give themselves shots..okay well there might be a small fraction of the population who want to, but I think it’s safe to say MOST don’t want to give themselves shots. The issue with the blood thinner shots is you have to give them on your stomach which means bruising and I’m so pale that it leaves a nice black and blue mark there.
Of course since we had my INR ratio at a nice even number my blood was nice and thin that means nice beautiful bruises. Since I am so pale that mean they look even more black and blue than I’m sure someone with a more tan coloring would look. This morning I announced very proudly how many I had given myself and how many I had left with a “but who’s counting” remark at the end of the statement. I mean I’m not trying to hurry this process at all..right?
I will be glad when these shots are over because that means two things a) the filter has been successfully removed and b) my INR has returned to a nice level again. If you had asked me 2 years ago if I would have this much medical knowledge I would have raised an eyebrow, then furrowed my brows and said no and then probably squinted at you. Now I shrug my shoulders and say c’est la vie which is French for such is life, shake my head and tell some quip or joke and move the conversation into a much more light hearted direction.
I have had a lot dumped in my lap, but I try not to let it weigh me down. I make jokes where I can, and brush the rest of it off. It’s not easy. There are times when I want to sit in the corner and cry and give up. I just have learned that I can’t give up. I have to shake it all off and keep moving. I can’t give in and humor has been my shield.
I have also learned that by telling my story I have helped others not repeat my mistakes. I have helped others get medical treatment when they needed it. I will be the first one to admit I am stubborn. I don’t particularly like doctors, doctor’s offices or hospitals. I will procrastinate going, but I am getting better about getting help faster. I have learned that you can’t always wait, it can be life or death. Waiting can kill. I am blessed that I have a good medical team who helps me make good decisions. Unfortunately there are times that there isn’t a great decision to be made. The other day we had a situation where there really isn’t anything that can be done besides just treat the symptoms for now.
I have learned to be a little more patient and be an advocate. I have also learned at the end of the day I know my body the best. I know what is going on the best and I have to speak up for myself. That has been the most challenging lesson of all. Learning how to speak up in the right ways.
So we tried to remove my IVC filter in December and I then had a hemorrhagic ovarian cyst that left 2L (yes liters) of blood free floating in my abdomen. So emergency surgery paperwork signed between grunts and screams of pain (trust me I can deal with pain but that I don’t want to have to deal with AGAIN!) Whisked into the ER and then told I was very lucky that it was only a cyst that had ruptured (they were thinking my ovary had ruptured but there was so much fluid they could not get a clear picture…go figure!
So we figured that Lovonox was to blame in the scenario because I was on a bridge because I was supposed to get my IVC filter out the next day. Yeah talk about timing! So I make frantic calls to get that canceled! So now about 6 months later we are planning to try again. So I am on shots again..oh the joys..does anyone really enjoy giving themselves shots? And I’ll be glad when this is all behind me. This IVC filter was only supposed to be TEMPORARY! It has over stayed it’s welcome! Get it OUT OF ME! IVC filters are tricky things they used to be placed more commonly to help prevent blood clots in patients with histories of Pulmonary Embolisms. Then the filters started to break and there are lawsuits galore (you probably have seen the ads on TV) so doctors do not place them in patients like they used to. I am one of those lucky patients that the benefit of placement out weighs the risks, but we still do not want it long term because they can break. Plus they can change the shape of the vein they are placed in and other issues. So the grand plan was to place it and then take it out about 8 weeks after my surgery…and then stuff just kept happening.
So needless to say I am ready for it to come out, and I will suffer through giving myself the shots so I can have it taken out and move on. We are taking life one day at a time. One medical mystery at a time. My shoulder is still giving me fits. I am rather annoyed at that. They gave me an IV in the hospital and then it started locking back up…unfair! I think it was because I held it so still, so I know it was my fault, but I am going to try and be more conscious about moving it around and working it this week.
When you love to watch medical shows and are chronically ill there are times when a show will have a character who has an illness you have, has a surgery you’ve had or has some other medical emergency that you’ve lived through and you just chuckle as you watch. Tonight was one of those nights and the character just happened to be another redhead…which also made it that much funnier. The character was a pregnant cancer patient who they decided to deliver her baby for the safety of the patient and the baby and during the delivery she had a pulmonary embolism. I of course recognized the symptoms immediately, knew she had thrown a blood clot, and turn to my wife and say you know pulmonary embolisms are deadly!
When I had my blood clot I had a saddle pulmonary embolism which is a blood clot(s) in both sides of the lungs and they are rare. Estimates are about 1% of the population will get them. Usually the person will die, they usually will not survive it, the doctors are still not sure how I survived mine. Medically I SHOULD NOT have been able to survive it. Now I have a story and I get to smile at the doctors and when they look at the scans and shake their heads asking how to survive I tell them I’m stubborn. There is no medical explanation, only divine intervention on my life. I am blessed.
Tonight I watched as the doctors explained what would happened, what the options were to the patient. She made her decision the show continued. For me they only felt there was one choice because they were sure that anything besides blood thinners would surely kill me and since it was nothing but a miracle I survived and it took them 5 days to decide that I MIGHT survive, they decided to just let my body keep surviving. I will be seeing my hematologist soon for my routine follow-up because now I get to see him on a regular basis to smile and tell him that I am a good girl. I also promise him I’m not trying to die on him.
It’s hard being a good girl! At least I am having fun while being a good girl! I have decided life is too short to be serious. Life is too short to eat boring food. Life is too short to not life it to the fullest. I just decided that I want to keep having new adventures and smiling all the time. I tell jokes and make everyone else around me smile because if you are going to make your family members lose their hair..they might as well be laughing while it’s happening right?
So I’ve talked about Creme the cat before and this cute mouthy feline is at it again! I was out-of-town over the weekend for a conference and so she was allowed to sit in my seat…well now I want my seat back. I know how DARE I..So today I get up to make my lunch and she decides that would be a good time to claim what she felt was rightfully hers….and that is when the fight began. So I come back and my seat was taken by the cat so I tell her to get down, so she meows playfully and rolls on her tummy. I tell her to get down again and she paws at me playfully. So I sit on the edge of the seat, now she decides that is an open invitation to sit ON my lap…I really should know better by now, but I got a lap full of cat. She head butted me and purred so loud I think our neighbors might have heard her.
So she fell asleep on my lap because I decided that I was just going to lose the battle, but win the war. I let her sit on my lap for a while and then when I went to grab my laptop she got mad at me and ran off to go plot my death because that was the last straw. We all know she likes to figure out how she is going to plot my demise..however every time I leave her for a weekend when I come back she is glued to my side so maybe I’m starting to warm up to her. Maybe at the last second she’ll decide to pardon me! I might have a chance after all!