Back to Iowa City I went, this time for a follow up on my heart and pulmonary artery stents! I will be honest and admit that I did not want to go. The last couple of appointments I have been to whether for my heart, SVC or lungs have pretty much resulted in the conclusion that I am as good as I am going to be. Not necessarily a bad thing but what’s the point of going to Iowa City every month if nothing can be done?
Yes, not a good way to be thinking and it’s been a long time since I have even considered skipping any Iowa City appointments!
So, while still in that negative mindset, I began texting my sister the night before to fill her in about how my symptoms were bad enough to be a bother to me but at the same time, they had not really gotten much worse since my last appointment. She was asking questions and agreeing with me on everything I said until I complained that my appointment would be a wasted trip.
And without hesitation, she shot back a text that said “but it puts the rest of our minds at ease”.
And wow did that text hit me hard! She was absolutely right and I realized just how negative…and selfish I had been!! A reminder that these appointments don’t just affect me, but my entire family and a lot of my friends!
Instead of being grateful that I have not had a significant decline in my health…I was complaining about having to go to an appointment and wasting my day to confirm that?! That would be the best news ever to hear there is no progression!
That text message changed my whole attitude and got me excited for the next day. Not much change would mean a quick visit with the doctor and no surprise tests scheduled that would keep us stuck there all day so maybe Tim and I could go shopping for a change afterwards!
Asher got to tag along again with us and the highlight for him was pushing buttons and riding in the elevator…
…and going up and down the escalator!
My cardiologist had moved offices so it wasn’t until we actually arrived that we realized his office was now directly across the hall from where Tim’s brother had passed away and I couldn’t help but mumble in frustration to God…”really? Like it’s not hard enough for Tim to keep coming here anyway?”
So that didn’t start things off too well with Tim but Asher was able to be a good distraction and he got dad to play some games on their devices while we sat in the waiting room…but that darn Christmas tree in the background is where Tim and I shared some heartbreaking moments over the loss of his brother…
Thankfully we didn’t have to wait for too long before I was called back to discuss my symptoms with the nurse and a med student.
Okay, for those of you who have gone through this…it can get quite tiring to repeat ourselves over and over to nurses, medical students, the doctors and more medical students so I have learned to make things even more interesting for those that I discuss my issues with! I totally appreciate all of them taking the time to listen to me but frankly, yes, my situation can seem gloomy and depressing so I let my personality shine through right away to give everyone an idea of what type of person they are dealing with! I want them to know I am happy regardless of what they have to say!! I don’t want them to be afraid to tell me the “bad” news! I want my team of nurses and doctors to know I am okay if they don’t have “good” news. Yes, my health is terrible, sure I am slowly dying…but we all are! Yes, I have some extreme pain and symptoms…but I am still able to laugh!
And today, even my husband had a “deer in the headlights” look at me when we were discussing my symptoms.
I was informing a medical student that I have been extremely tired with chest pressure the last few months, however, I didn’t really think it had gotten worse from the last time I went through the heart cath procedure. Tim also pointed out that I have been pretty swollen in the mornings, especially in my head and held out his hands to expand on how much bigger my face was.
And I really don’t know where and why this came to my mind but without skipping a beat I looked at them and said “he goes to bed with a 10 and wakes up with a 2”!
Noooo, that was not appropriate and NO, I shouldn’t have said it and NO, I probably shouldn’t blog it but the look on their faces was absolutely priceless…😂😂
That was pretty much the end of our conversation and then Tim was able to manage a “I can’t believe you said that” in between laughs before the doctor came in.
We reviewed the most recent scans I had done a few months ago and as expected, he didn’t think much had probably changed from my last heart cath since my symptoms have still been manageable! Stable is good…I will take that over progression!! Here is my left lung which is working at 100%…the dark shaded areas indicate a healthy lung with significant blood flow. I really am praising the Lord every day for the lung function in my left lung!!
And then, here is a current picture of my right lung…unfortunately the stents in my pulmonary arteries did not hold up as well as we had hoped for so basically as seen…the only blood flow in my right lung is in the lower lobe, therefore, very little lung function.
My doctor did say that in order to know exactly what was going on, as well as to measure my numbers for the arterial hypertension, that we could schedule another heart cath procedure where he would go through the groin again and then intervene if need be. However, the cardiologist feels that he has done all that he can do from his standpoint and the fact that the rest of my lung is so bad…he doesn’t feel going in would benefit me much regardless. I agreed and confirmed that I did not want to go through that procedure again….especially if it will not benefit me…the risks are simply not worth it to me at this time.
I of course did take into consideration that it’s also important to intervene if need be as soon as symptoms arise but my symptoms have not gotten significantly worse in my opinion, from the last cath I did, so I am fine with continuing to just monitor. Plus, he pointed out that some of the vessels were completely gone now so stenting isn’t even an option anymore!
He then made small talk with Asher throughout the appointment but with so many different people trying to carry on a conversation with him, Asher decided to shy away from everyone…but he still flashed that smile of his!💕
So that is my update. I do go back to Iowa City in a few weeks to discuss the numbness in my right leg and arm as well as the new diagnosis of Raynaud syndrome.
Again, I did not want to post these pictures in order to gain your sympathy, but instead, I just wanted to give a visual of what I am dealing with and talking about when I say my lung is functioning at less than 1/4. Life is definitely more challenging for me but yet so much more rewarding!! I have been given a deadline for all of my illnesses yet I continue to fight past the dreaded prognosis….and every day is a reminder of how blessed I am to be living another day with my kids and husband!
And because of the extremely painful symptoms, the never ending doctor appointments and the continued uncomfortable procedures and surgeries that will always be a part of my life…I have learned to trust in the Lord and not lean on my own understanding! I have outlived all of the prognosis’ I was given which only proves God is in ultimate control and is the only one who knows how many days I have left! He is with me and has blessed me more than I ever could have imagined!
Life is not easy but He never promised that it would be!!! What He did promise is that I would be healed some day when I enter His kingdom and I know this to be true! My circumstances and illnesses may be difficult and never ending now but my hope is in an eternity of being pain free and filled with a joy I can’t even begin to understand through and with Jesus Christ!