Wednesday, December 21, 2011
I feel a bit better today! The pain killers are helping and knowing that the clot has not grown has eased some of my anxieties. I am still very scared of what's to come on the 27th, but I will cross that bridge when I come to it. For now, I am just going to try to enjoy Christmas as much as I can and give the boys a fun holiday! I can only hope that the new year will bring less pain, suffering and loss! Lisa and I are having a new years party that we have entitled "F**K 2011, Bring on 2012!" and hopefully that will usher in a new and better year!
Until next time. XOXOXO!
Tuesday, December 20, 2011
I have joined quite a few resource groups regarding blood clots (http://stoptheclot.org/ and http://groups.google.com/group/may-thurner-syndrome-support-group?hl=en) and they have been very informative and supportive, but some of the patient stories are truly frightening! Not just because many of the outcomes are less than happy endings, but that alot of the stories mirror my own in so many ways and some of these stories have those "less than happy endings"! I just wish that there was some way that I could have some guarantees. I want a guarantee that the procedure will go smoothly, that the recovery will be quick and easy and that the clot won't break loose afterwards and kill me.....it's a pipe dream I know, but it would be really nice if it were possible.
In some of my research I did find a small glimmer of hope...there is a doctor at Stanford University Hospital named Lawrence Hofman who specializes in DVT's and more importantly May-Thurner Syndrome (which I have gotten a preliminary diagnosis of). I found him through the May-Thurner Syndrome Resource Group as he has seen quite a few of it's members. I called Good Sam today and started the process of getting ahold of my medical records and then, hopefully, he will review them. I don't know if he can help in any way, but it's worth trying right? The Stanford website says that their Interventional Radiology department has had success treating clots that other Dr's wouldn't touch with a ten foot pole. They have apparently restored flow in veins that have been blocked for 25 years.....that is unheard of!! My Dr's won't touch my clot because it is more than a month old and they don't want to risk further damage to my vein unless it completely occludes again....Well, that's all well and good, but I want a damn resolution and I want it sooner rather than later. I want to get back to my life, I want to go back to work, I want to have just one day without pain....are those things to much to ask for? I think not!
Once the filter is removed in 7 days, my lungs are at risk. It's back to that "ticking time bomb" thing....and I really don't think that will be at all helpful to my anxiety levels. I hate feeling like this! I hate having constant fear and anxiety. I hate not being able to help support my family.....to be a good wife and mother......it's just all so frustrating! Some days I feel like I am literally losing my mind. I have dreams that find me either dead, dying or running away from some unseen villain that is trying to kill me. The last dream was almost comical.....I was being chased by some faceless, maniacal killer and when he finally caught up with me he was covered in tattoo's that all said "DVT" in varying sizes and fonts. I woke up from that one laughing. But it's the underlying fear that has created these dreams and that fear is not something that I can laugh off. Believe me I've tried! I make jokes and turn my misfortunes into punchlines, but it's all a defense mechanism....a way for me to keep people from seeing how I actually feel, how truly afraid I really am. I hate pity, and I can't take it from anyone....not even the ones that love me the most! The only person that has even an inkling of how I really feeling is Brian, and even he does not know everything. Non of you do...some things I just cannot say!
Thanks again for reading! Much love to all!
Sunday, December 18, 2011
Two days after Christmas, on the 27th, I will be checking in to the hospital to have my temporary IVC filter removed. I have to be there bright and early at 7am. From all the research I have done, it should just be an in and out procedure but I am not holding my breath. I will be discontinuing my warfarin (Coumadin) on the 21st and resuming the injections until after the procedure to, hopefully, prevent excessive bleeding. It's a precaution since they have to go in through the jugular vein to retrieve the filter. I am really not looking forward to this, and not just because it means another hospital visit and recovery, once the filter has been removed my lungs and heart are no longer protected from rouge clots! I am concerned because I still have the DVT in my leg/groin and if even a relatively small piece breaks off after the procedure, it could travel up into my lung and cause a pulmonary embolism (PE). Most people that develop a PE recover, but not without a long hospital stay and massive amounts of anti-coagulation, there is, however, a small percentage of people who do not. I have found numerous stories of people literally "dropping dead" from a sudden and massive PE......this, of course, scares the shit out of me! After the 27th I can't help but think that I will be like a ticking time bomb! I know it's a very pessimistic outlook , but with the year I have had how can I possibly feel any different? I used to think that I knew my body, now I have no idea whats going on in there....I think that is what scares me the most.....
Anyway, thanks for listening to all my rantings yet again! I hope you all have a wonderful holiday!
Friday, December 2, 2011
When I saw the missed call from Grandma on the morning of November 3rd and heard the stress in the voicemail she had left me, I just assumed that one of the kids was causing her grief or that Grandpa had done something to upset her and she wanted to vent. What I did not expect was the words that came out of her mouth when she answered her phone and realized it was me..."Papa passed away last night." In that second my whole world collapsed...I couldn't speak. Grandma was very calm, but I could hear the heartbreak in her voice and I knew that it was true. She asked me to come pick up the boys because the police were there and she didn't want them to see anything. I hung up and lost it....when I went to wake Brian I couldn't even get the words out right. All I could manage was "Grandpa died last night"....I still don't believe it even when I say now. I still don't believe it when I pull up to Grandma's house...I still expect to see Grandpa standing in the driveway to greet me. He was such a vital part of my life and now he's gone! He was my "Dad" in all the ways that mattered....he taught me how to ride a bike, how to drive a car, he was there for all the milestones in my life...there are so many milestones left to be had and he won't be here for any of them. The one thing I really wish he could have seen is me finally being healthy again. I know he and Grandma had been worried this past year regarding my health. I sometimes wonder if that wasn't a contributing factor to his death, all that added stress and worry over me could not have been good for Grandpa's heart.
I never imagined that Halloween night would be the last time I would see my Grandpa. We had gone over there to take the boys trick-or-treating just like every year. Grandpa went with them for the first go around, but he got cold and tired so he came back to the house and sat with me while I handed out candy. If I had known that this would be our last visit I would have told him I loved him, I would have hugged him when we left, I would have made sure that he knew just how vital a presence he was in my life....I know in my head that we never know how much time we have left, but my heart can't accept the fact that I didn't take advantage of every moment we had on Halloween. We sat there on the porch talking about the most random topics. None of them were important...most of them were rather pointless, but we were laughing and sneaking candy when Grandma wasn't looking, so I guess those last memories are good ones and that is what really counts! The lesson I have learned through all the losses I have suffered in my life is to not take anyone for granted.....savor every moment because it very well could be your last!
I will love and miss my Grandpa every minute of every day, but I know that he is watching over me from Heaven........and when it is finally my time to join him I hope he's still wearing that old blue windbreaker!
Tuesday, November 29, 2011
This really has been the worst year ever. Since my last post I spent eight days in the hospital, had three separate surgeries and lost my Grandfather! Let's start from the beginning shall we....
After being released from the hospital in September, I was put on a daily regimen of Coumadin and Lovenox injections to thin my blood to a therapeutic level. I never reached that level.....it was decided by my vascular surgeon and interventional radiologist that I should have the clot lased (removed) via a catheter through the back of my calf (veinoplasty). This was done and they placed four stents in the illiac vein and a temporary filter in my vena cava to prevent rouge clots from entering my heart or lungs. I thought we were done, with the exception of having the filter removed in December (which is scheduled for the 27th), I was wrong.....During a follow-up appointment with my vascular surgeon I mentioned that I still had an ultrasound scheduled for the next day (it had been scheduled by the hematologist while I was in the hospital the first time) and I didn't know if I needed to keep the appointment. My Dr said to keep it since he was "curious" what it would show, but didn't anticipate any changes. This time, he was wrong! After the ultrasound, the tech asked me to wait while she talked to the Radiologist....never a good sign....after about twenty minutes she came back out and told us that the clot had grown and to expect a call from my VS. I immediately freaked out, so Brian decided to take me to the coast for some much needed R&R while we waited for the Dr to call, we had only made it to downtown Corvallis when my VS called and said that he had never wanted me to leave the hospital and to return immediately! I had a complete meltdown....not again!! Hadn't we been through enough?!? I ran home, grabbed my bag and headed for the hospital. This was the beginning of an eight day ordeal that included two more veinoplasty procedures, the first one was unsuccessful so they hooked me up to TPA (heavy-duty clot busting drugs) for two days and then repeated the veinoplasty, and a full blown surgery where my VS cut open my groin and then cut the vein open and placed a patch made of bovine pericardium to help hold my damaged vein open. He seemed very optomistic, as did my IR! Both said the clot was gone, flow was good and that other than some residual pain and swelling I was on the mend. I could barley walk and even had to use a cane for a couple weeks after leaving the hospital. The swelling and pain was almost unbearable! But, day by day it got better and I thought maybe we were in the clear. My hematologist put me back on the Lovenox injections twice a day and ordered an ultrasound per my request. Well, guess what, the clot is back! Same location as before. As if I expected good news... optimism and I are no longer friends! My hemo decided to send me up to OHSU for a second opinion. We went up on a Monday afternoon, and after five hours the Dr's there told me the exact same thing as my Dr here...there is nothing more that can be done at this time. Only if the vein completely occludes again....how do we know if that happens? Well, we don't, not really...now it's a waiting game and constant monitoring. I still have to have the filter removed next month, a procedure that I hear is very unpleasant to say the least, but that will be a story for a later blog. I am being put back on Coumadin tomorrow and that scares me, the last time I was on Coumadin (after the first veinoplaty) the clot grew from being one to two inches long and isolated to my groin to completely occluding the vein from groin to knee! I have been having pain the last few days, and that scares me too! I do not want to go through this again, I do not want to end up back in the hospital!
Thanks for listening to my rantings again guys....XOXOXOXOXO
Tuesday, September 20, 2011
Why can't things just go back to normal right now???? Is that really to much to ask? I have been having health issues since last year, and each new problem is worse than the first. Every time I think things are getting better, I get hit with something else......it is really becoming too much! Another thing that bothers me........if someone says "I had tonsilitis, and had a tosilectomy." or "I had appedicitis, and had an appendectomy.", everyone knows what that means and will say "Oh, that sucks." or "I am sorry!", but when I say "I had an obstructed ureter and had a robotic-assisted laproscopic pyloplasty" or "I have MTS (May-Thurner Syndrom) and developed a left iliofemoral DVT (deep vein thrombosis).", people get that awkward, glazed over expression and just say "Huh?" or "That sounds bad!". Why can't I have a normal illness? I mean, if I am gonna have one, why can't it be one that everyone understands? I get very tired of explaining it over and over, so I keep it simple "I have a blood clot in my groin."
Due to all of this, I have sunk into the deepest depression I have ever experienced. I am normally an outgoing, fun-loving person.....but I don't even want to see people, much less spend any time with them. I spent an entire afternoon in bed the other day listening to music and crying. Most days, I feel like I am watching someone else's life...this can't be my life, this can't be me laying there feeling defeated and alone......and then I realize that it is me and I cry a little harder. I have tried to find the humor in the situation, I make jokes about having no luck but it is for everyone else's benefit. I, myself, can find no humor in all of this. I can find no reason. I said in a past blog that I must've done something really bad to have brought all this down on myself, but i can't figure out what it was. I have always tried to be a good person, always tried to put others ahead of myself. Of course I have made mistakes and done some things that I am not proud of, but I don't believe any of that would merit all this hell.
I started this blog to give me an outlet for my feelings, a sounding board, a way to say all the things that I can't say to anyone in person. I am glad that I did. It has given me a way to vent my feelings without fear or having to see the look on peoples faces that says "Oh, poor Kari!". I don't want pity, I don't want people to feel sorry for me.....I want people to pray for me! I want them to pray that my health is restored, that this will all be over soon....that is what I want, that is what I need!!
Thanks again for reading.....Much love to all!!!!
Sunday, September 18, 2011
I really need to start from the beginning for you to get the full impact of the situation. Back in July of last year I was promoted to ASM of the Salem TJMaxx store. Sounds wonderful right? Wrong!!! That was the beginning of the end as they say. Oh it started out great....new store, new position, an amazing new staff and what I thought would be an amazing boss...I couldn't have been more wrong! I had every intention of retiring from TJMaxx, it was my career.....well that all went down the drain a few months later. The situation there between me and my boss was toxic....I am pretty sure he hated me! It just kept getting worse and worse. Everything came to a head in December when I started getting sick. I had never realized how bad stress is for your body until that time......It wasn't like I caught a cold, it was constant unexplained weight loss, my hair was falling out, my stomach was in constant knots, my throat would tighten to the point where I couldn't swallow, I couldn't eat, I barely slept......it was really bad. I ended up off work for a week. During that week I had blood draws, various tests, I even had a colonoscopy. It was one of the scariest weeks of my life...well, until now but we will get to that in a minute. After all of that the Dr told me to avoid stress and come back if my symptoms persisted. I went back to work and talked to my boss, but nothing changed. After the hectic holiday season I finally decided enough was enough and quit. I got an amazing job as a caregiver at an Alzheimer's facility. I thought all my problems were behind me......boy, was I wrong!
Almost three months to the day of starting my new job, I got what I thought was a kidney infection. I went to the Dr and was told just that, I was sent home with antibiotics and pain meds. As the day progressed the symptoms got much worse and I ended up in the ER, I didn't have an infection, I had an obstructed kidney which wasn't draining and would require surgery, but first they needed to put in a stint to allow the kidney to drain....as you can imagine I was terrified and confused. That situation began on June 6th and didn't come to an end until Sep 9th when the final stint was removed. I immediately felt better. It took three hospital stays and three procedures including surgery, but I felt like it was finally coming to an end and everything would be getting back to normal. I was scheduled to finally go back to work on September 16th and everything was going according to plan...until the afternoon of September 14th...the day after my 32nd birthday.
Well, actually it started on my birthday.....
I had a really strange pain in my lower left groin. Kinda like I had pulled a muscle or something....it was annoying, but not debilitating and so I ignored it. The next day, I woke up and the pain was still there, only this time it was difficult to walk. I was a little worried, but was still going with the pulled muscle theory. Then the fever started....Brian started to get concerned! He thought I had developed some kind of infection. I was worried, but I had seen so many Dr's and been to the hospital so many times recently that the mere thought of calling or going in sent me into panic mode. I finally caved around 9pm and called my urologist answering service. After talking to my Dr, it was decided that I should go to the ER......of course this infuriated me, but I relented, mostly to make Brian stop hounding me. When we got to the ER they hooked me up to an IV, took some blood and urine, and gave me some pain meds.....all pretty routine, with me whining that I wanted to go home the whole time! All the tests came back normal, and I thought I was almost home free, then the Dr decided to do a CT scan just to make sure everything was ok with my former surgery. About an hour later the DR comes in the room, sits down (never a good sign) and says that I have a large blood clot in my groin and they were admitting me to the hospital. I have never been so terrified in my entire life! A blood clot is serious shit...it can kill you if it ends up in the wrong place! So, there I was, my mortality staring me in the face, and all I could think was "please don't make me stay here, I don't want to be in the hospital..." I was there for two days, hooked up to an IV of Heparin (a blood thinner), and God knows what else. On the second day they said I could go home if I gave myself shots of a blood thinner and took Coumadin everyday. I asked if I could go back to work and of course the answer was no, not until the risk of throwing the clot to my lungs had passed, when that will be we don't know. I now have to go to the Anti-coagulation Clinic to get my blood tests done every week and will possibly have surgery to remove the clot and stint the vein, I won't know for sure until I see the vascular specialist.
Not sure what I did to bring all the hell down on me, but it must've been really bad to have karma be this much of a bitch!!
All I can do now is pray!!! And vent on my blog......that's all for now guys, thanks for reading and I'll keep you posted as much as I can...
Wednesday, July 27, 2011
Monday, June 27, 2011
I don't really know when exactly I stopped writing, or why for that matter. I never wanted to do it professionally, all of my writings were meant for me and only me, but I truly enjoyed it and, more importantly, it made me feel better. I guess life kinda got in the way. Between marriage and kids and work, finding time to just sit down and write was nearly impossible. At least, that is my excuse. The reality is that I can't seem to write unless I have a muse and, sadly, my muse is depression and anxiety. Hence the dark, depressing and often blood-soaked scrawling of yesteryear. Writing it all down was how worked through all those feelings, but up until recently I had no reason to write...my life was as close to perfect as you can get, but last year that all came to an abrupt end. Now, here I sit....writing.............
It all started last summer when I got promoted at my former job. I thought it would be an amazing experience, I thought I was making the right decision....lets just say, I WAS WRONG! That situation created so much stress in my life that it literally made me sick. It got so bad that I would come home nearly every day in tears. Let me tell you, that is no way to live! So I made the gut-wrenching decision to leave that job and take a lower paying but very rewarding job closer to home. After that, I thought the anxiety and depression would go away...again, I was wrong.
Exactly three months into my new job my health took a dramatic turn, I was hospitalized twice and am awaiting word on an impending surgery. I don't want to go into gory details regarding procedures or anything, but I will say that this is, hands down, the worst experience of my life to date. Worse still, I have sunk into a severe depression and I am having anxiety attacks 24/7. If it weren't for my amazing husband and children I don't know where I would be right now.....actually I do know, and that scares me
It has been years since I felt this afraid and alone, I am becoming despondent and anti-social, which is so not me! I hate feeling this way!! I hated it a decade ago and I hate it today! Sadly bi-polar disorder and anxiety run in the family, on both sides, so there is no escaping it. On the bright side, my muse is back! I can write again.....so instead of paying money I don't have for therapy that won't help I have decided to start this blog. Consider it my online journal, my sounding board if you will. And maybe, just maybe, my rantings can help someone else feel better about themselves and their situation.