Ok, I think I will get the bitterness out of the way so I can end things on a more positive note.
First off, I must say the surgery itself was the worst procedure I have ever experienced. I was extremely nervous and throughout the whole procedure, I pretty much felt everything! After I was prepped I thought I heard one of the nurses say that they didn’t apply the Lidocaine on my leg to numb the skin. I felt the sharp prick of the needle as they attempted to numb me that way but shortly after, I had quite the discomfort as they made the incision in my right groin, even worse I felt the weird poking and worm like sensation going up my body as they were guiding the catheter up through my vessels. I did have some medication, so parts are foggy yet I do recal jumping every time I felt pain or flenching simply from feeling the touch of the doctor’s hand. I remember this new doctor several times throughout the procedure asking “you feel that?” as I stiffened my leg or tensed up from the pressure. This is the doctor who told us before the procedure that he has done two or three of these surgeries. I knew that was not encouraging! The nurse said she gave me more medicine every time I noticed pain however I continued to be beyond uncomfortable.
After almost 2 hours of doctors poking and stabbing me they finalized the procedure by saying that my PA stents were open. As they were cleaning me up, getting ready to wheel me back to my room, the 3rd doctor who is new to my “case” tells me something to the effect that I should not be crying followed by…”crying does not help your situation”. I swear to God if my leg wasn’t throbbing he would have felt my foot in his groin and then I could have told him crying doesn’t help him either!! And yes, not lady like or Christian like at all but seriously, isn’t that a little insensitive?! I feel sorry for his first two or three patients he did surgery on because for me being his third or fourth, he really sucked!! Instantly angered, I kept my mouth shut the rest of the time in that operating room except to reply with a very sarcastic “oh no, I’m just fine” as the nurses questioned if I was doing ok. I mean, they were just cleaning me up and now they were concerned with my well being?
Needless to say I was not happy with the results I received after my surgery. In my mind, the worst thing that could have happened did…my stents were open and in fact, even looked great…but now what?
I got back to my room where I would be laying flat for a few hours and the look on my face apparently showed my disappointment and frustration. My mom tried to reassure me that we would find answers yet I got grumpy with her, telling my parents, my sister and Tim that I was done. I am done! I am not putting myself through anything more. Done! I know, I was being selfish but in that moment, I did not care.
It’s the fact that after an awful procedure, I am coming home to battle the same symptoms I went in for, because nobody has answers for me. With a rare disease, doctors are pretty much playing the guessing game. After how many months of me saying something is not right, they decide to review my scans from how many months ago then call me up and says my stents might be narrowing. That was the only reason I agreed to doing the procedure as I thought it was a for sure thing needed to “fix” me. Unfortunately, the only way to truly know, is for doctors to go in and do these procedures. I honestly cannot believe my stents aren’t closed because these are some of the symptoms I was exhibiting before I got the PA stents. I know my body and something is going on, something is not right! If my stents had been closed, that would have been an easy fix, instant relief, and reassurance that nothing else is wrong.
It’s just like when I was first diagnosed in 2002, it’s just like 2007 and it’s just like I felt in 2013, the years when new symptoms flared up. In 2013 I received a couple more stents in my SVC and was to be good to go, however, that wasn’t the case and for a few months I felt awful! I was slowly feeling worse every day. Doctors checked my SVC stents and they were open so I was continually sent back home bc stents looked good. It took over 3 months of me being forceful, and annoying the doctors by telling them that I was not okay, before they were able to discover that my pulmonary artery was blocked, causing my symptoms, which resulted in the two stents. These are the times leaving me to question, how is this improving my quality of life when I am constantly doing testing and fighting for answers. Mind you I have diabetes so all of the stupid contrast they use for all of these tests can mess with the kidneys and that’s what’s going to end up killing me!
Ok, my rant is over…I think! So after a few days of rest…and crying…and praying, I am better today and truly am grateful that my PA stents are open. Even better, my GOOD doctor explained that since the stents have not closed yet, that is a good indicator that they will stay open longer. That is wonderful news because after this ordeal, I do not plan to do this procedure again anytime soon, if at all!! It was just the initial shock and fear and unknowing that overtook me, not to mention a lack of meds and a doctor who definitely needs more experience.
Luckily my heart has calmed down from that one episode a couple of weeks ago but I am still fighting heart palpitations, shortness of breath, crazy memory issues and most of all that dang fatigue. There are days I’m ready to go and I have the motivation to get stuff done, but then just like that, I’m fried and literally cannot keep my eyes open. I will tell Tim or Skye I need to lay down and next thing I know I’m waking up with my glasses still on trying to figure out if I passed out or if I really intended to fall asleep! I am able to tell when I’m getting to that point of exhaustion so I am fortunate that I can make sure someone is caring for the little ones. I am wearing a heart monitor for the next month to try and catch the symptoms I’ve been experiencing so that doctors can try to figure things out.
Unfortunately, I am afraid that it might just come down to me accepting the fact that these are what bad days consist of with this disease. I mean, I did develope pulmonary arterial hypertension in 2013, which we recently learned is another rare disease when Tim was watching the list of diseases at the end of the new video for rare disease day!! Wow how lucky am I to have TWO rare diseases?! So while all of my symptoms I had those few days a couple of weeks ago, is an exact description of what hypertension is, my hypertension is “unique” and we all know, especially my brother in law, that is not a good thing.
And this time at my hospital visit, I did learn that my blood pressure is a lot higher when it is taken on my right arm compared to my left arm as the nurse had checked it on both sides. This of course makes sense and is due to the fact that the FM attacked the right side of my body, the right side of my heart, my right lung, which caused the uncommon hypertension, etc. But again, I’ve had that odd hypertension since 2013 so why is this the first a nurse has ever checked both arms when doing my blood pressure?! Such a lack of knowledge is beyond frustrating. So NO people, me eating Culver’s all the time has noting to do with my hypertension!! 😉
So, I am sorry to my family for being down right awful after my procedure. My sister Michelle did of course have some great comments to make me laugh. Once again, her being there helped to keep my mind distracted, although unlike my last surgery, she did not eat her candy bar over me, causing it to crumble on my blankets 🙂 Her help with the kids has been awesome! I will admit though, one of the worst feelings as a mom is having your kids crying for mommy with their arms wide open and having to turn away, only for someone else to pick them up. However, I’ve pushed my limit too far, too fast in the past and suffered for it, so I’m slowly getting rid of my stubbornness and accepting help. I couldn’t have done the couple of days without her, and it was nice to hang out! Kids clinged to Michelle from the start so it was hard seeing her leave. I’m pretty sure though my kids have reinforced to her that she should be thankful that all of her kids are almost out of the house 😉
And to my brother Ryan and sister in law Sarah, I know they were disappointed that a snow storm prevented Sarah from being here but it’s not like I won’t be doing something like this again! Shoot, in April I get to do it all over for my SVC stents so I will put her on the top of the list to take care of the kids 😉 Plus Ryan and Sarah provided us with some delicious meals…from our favorite place to eat!!
Thanks to Sarah’s brother Ken for the pretty flowers and umm card. Haha! He too knows the struggles that are faced as he lives with a rare disease himself so he could always use some prayers as well.
Thank you to my mom’s cousin Lori for bringing over some wonderful meals!!
Thank you to Tim’s family for all the support and prayers and meals! And to my awesome parents in laws who wrote a letter about my illness and what it’s like to live with a rare disease, sent it in and actually got the house of representatives to read their letter about my disease! Mom in law Debbie was kind enough to get up at a crazy hour so she could get over to our house early and help with the kids when we went to the hospital! Brother in law John and father in law David battled the cold air and did chores for Tim so that he could deal with my grumpy self…before and after the procedure 🙂 But, payback is always around the corner as it was me dealing with a grumpy Tim the day after my procedure when ALL 3 of our vehicles didn’t start due to the bitterly cold weather! Ha go figure!
My other sister in law Dawn and brother in law Aaron are pretty awesome too for cooking up some meals in the midst of their own battle with Aaron fighting leukemia. Please keep them in your prayers always!!!
Then there’s my darn parents for coming home early from Florida to support me as well as to keep Tim company during his long hours of waiting. I have amazing parents who have been on this journey with me from the very beginning. Experiencing so many ups and downs with what this awful disease can do. They have been able to ignore my cries of outrage and frustration and still manage to push forward for me. They have been so supportive and it is because of them that I found answers because so many times I wanted to quit searching…I mean every single doctor over how many years told me I was dying, so why wouldn’t I believe them? My parents have shown me how determination and most of all FAITH in knowing that God does answer prayers, will get us through anything and everything. Thank you mom and dad!!! But, my parents then passed me on to Tim…well kind of 😉
When I told Tim about my illness he supported me but I also told him I was good to go, no more problems. Mom reinforced this too simply because this was what doctors told us! I had received 4 stents in my SVC and that had improved my symptoms dramatically to the point I was symptom free! Of course I was better because doctors told me the damage was done, and stents had fixed that damage! We would soon find this was not the case.
My symptoms came back about 4 years after receiving my stents back in 2007 and it was making life harder to function. Tim and I had been married two years and he had never experienced any of the nastiness this disease can do. I was becoming weak, physically and emotionally! Tim was quick to blow the symptoms off as fast as I was. But I only got worse, staying in bed for days, from extreme chest and head pain or simply because I was too exhausted to lift my head from my pillow. If I was in bed, these were the times when Tim doubted how sick I really was and told me “if you think you’re sick, you will feel worse” and I just needed to be moving, basically telling me to buck up. I could sense his frustration with me but I really couldn’t help it.
His attitude changed very fast when he came to an appointment with me and heard the severity of my illness from how the doctor explained it to us. Before driving back home from Iowa City, Tim was mad and even yelled at me that I told him I was fine and stents had made it all better. I mean, he was mad! I started crying, saying I was sorry as that’s what doctors had told us and the whole ride home all I could think was Tim had regretted marrying me. After me crying and Tim not talking, the 2 hours of silence made me sick to my stomach as I felt my husband of only two years, hated me, on top of thinking he’d never be able to look at me the same now that he finally understood how sick I was. We got home and this water came flowing from my husbands eyes, something I had never seen 😉 Tim told me he was sorry, sorry that I had this awful “thing” an sorry for not believing me. From that point on Tim has been to every procedure and almost every appointment…and that’s been a lot. When I doubt my qualities as a wife and mother he is quick to lift me up…well sometimes! Ha! When I take my frustrations out on him he is quick to forgive and when we were struggling with the strain of it all and things got pretty bad between us, he was able to lay down his pride and go talk to our local pastor with me. But, he has also made me laugh through it all and his sense of humor is the most amazing quality that I love about him. He knows me well and knows when to joke…and when to keep quiet….but then he jokes anyway which leads me to being mad at him for laughing because I don’t want to be laughing! It’s never failed that when I am weak, he is there to be strong for me.
Tim came into my life 10 days after I received my first set of stents and after that one doctor who finally had helped me and told me to “go live your life”.. .God obviously made Tim and I for each other and we are both working hard at not letting this stupid disease ruin us! Don’t get me wrong though, there are days that are much harder especially when I’m down for longer than 3 days….that tends to be Tim’s limit with taking care of things…and I can’t blame him! The reality is though, when symptoms strike it’s impossible to make them go away any faster, I’m basically just trying to function and trying to wait them out! However, as hard as I try, I cannot conquer the really bad days of this disease!!!! I know Tim can’t fully grasp that, nobody does and the longer I go with symptoms, the more people question if it’s really symptoms or something else and start throwing excuses as to why I might be feeling so lousy… depression, weather, the craziness of life. Regardless, these are the days that test me and Tim the most and we have to make the conscious decision, and effort, as to if we are going to react the way we want to, or let God handle things. This was also discussed in our small group so while Tim and I are still pretty quiet in our group, we have already learned so much!
We have both seen the ugliness and sinning out of anger that occurs when we try dealing with things on our own so I know we will make it as long as we keep God in the center of our marriage, while improving our own relationships with Jesus! So thank you Tim for the man that you are!
Anyway, I’m just extremely emotional and rambling but I’ll wrap things up 😉 We are just so overwhelmed by the thoughtfulness of everybody, and everyone willing to put their own lives to the side to help us! We are truly blessed with our family and the circle of friends we have! Thank you to you all! Praying is the best thing you can do for us so please keep it up….and meals have been nice too 😉
Oh and to mom, dad, Michelle and Tim…new rule after my confusing start this time…what happens in the hospital, stays in the hosptial 😉