On the road to answers

Saw a new interventional doctor today since my original doctor, Dr. Youness left the hospital. I really liked him today and overall, not a terrible outcome.

I got set up for my venogram and then after explaining my symptoms, the nurses decided to prep me for intervention. I did tell them that I had these symptoms 6 months ago and my SVC stents had been open at that time, so I highly doubted they would be closed today. They prepped me anyway. An IV in both arms, oxygen and heart monitors along with a blood pressure cuff around my leg as they would be accessing my arms. I was wheeled into surgery and techs provided small talk while they explained what would be taking place. Nothing new to me, let’s get this show on the road. I did have to wear oxygen this time, however. I was then given meds to relax and meds for pain, and unlike my procedure last month for my pulmonary stents, these medications worked! And since the meds worked I didn’t ask why doctors were making incisions in both of my arms but instead I just admired the blue tarp like tent above me 😉 Soon I felt the slithering of the catheter going through my arms and I drifted in and out as they finished up. 

While cleaning me up, the doctor informed me that my stents looked good, they were open and therefore, instead of a 6 month follow up, I had graduated to not coming back for 9 months. I truly was grateful for this report! They got me back in to my regular bed to roll me to my room and the nurse said after 2 hours, I would be able to go home. Wait…what??

I questioned why 2 hours if they did no intervention but I knew the answer. She went on to say that since they had made the incisions and went in through my arms, they had to observe me for a couple of hours to make sure the incision sites were ok. I was instantly upset but didn’t say a word. 

Tim came back to my room and I simply said “I’m being nice” and he laughed, knowing my tone was proof that I would probably start bleeding from biting my tongue. Tim too said he had asked the nurse why my procedure took so long if my stents were open and she had told him it was for a learning experience. Have I mentioned how much I despise being “special?” Luckily the doctor came in to make things a little more clear.

The doctor started off by saying my SVC stents are open and after comparing with my previous reports, there was no significant change. He right away questioned my heart arrythmia and palpitations, asking if I see anyone for those. I informed him of all that has been going on with my heart symptoms and testing. 

He then began explaining why they had gone in to prepare for ballooning. He stated that when they put the dye in my arms, it took a lot longer for the dye to get to my right lung/right side of heart. They assumed my stents were closed so they went to perform angioplasty but found that my stents were indeed open. He very hesitantly asked if anyone mentioned pulmonary…and then he paused. I finished his sentence by saying yes, I have pulmonary arterial hypertension on the right side, high blood pressure in the artery that goes from my lung to my heart. He was then more eager to talk stating that the hypertension was the reason for the dye moving extremely slowly to my lung/heart. He also stated that the hypertension was higher than the last time they had done this procedure….whatever that means!

 He encouraged me to make sure I talk with my cardiologist because his main concerns were my heart arrythmia and hypertension. He went on to say that all of my symptoms I have been dealing with over the last several months, could most likely be due to the hypertension. 

He mentioned there might be medications to help my hypertension but after researching, in order to improve it, you have to treat the the problem that is causing the hypertension, therefore, I might be screwed. Ha! I took from our visit that the only way to improve my hypertension is to improve my FM as that is the cause, and nobody knows how to do that.

Oh, and the doctors did make an unnecessary extra incision (kind of, but they don’t really know how well the stents are working, unless they go in) so the nurse gave us free parking passes! Tim says for free parking they can give me as many incisions as they want! Deb, our nurse looked at me with sympathy saying what a nice husband! She is a regular nurse that has known me since I got my stents back in 2007. She is a riot and we like to go back and forth with each other. 

I also told her a 2 hour stay was ridiculous when they didn’t do anything. She agreed and told me to go so I got dressed and left! In the picture below, the two smaller white bandages in each upper arm is where they always go through for my procedure and then the green bandages were from my IVs. Crazy this is what a good report looks like for me! A lot to go through just for things to be fine!

 So, overall I am happy with the outcome today, minus some limitations and discomfort over the next few days to come. My SVC stents are open and I feel like I got some answers in regard to my symptoms, even though it means more testing and possibly more news I won’t want to hear. Thankfully though, God is still blessing me with better days than bad, and while these bad days the last couple of weeks have been hard to get through, I know that they will not last and better days are always just around the corner. 

Thank you to our parents and aunt Brenda for helping with the kids, to our small group for yet another great meal and most of all, thanks for all your prayers! Now it’s time for me to go to bed before the meds wear off and I get cranky 😉

 

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6 thoughts on “On the road to answers

  1. Pat Biersner says:

    Becky this is Pat an old friend of your moms all I can say is I’m sorry for all you have gone through. My heart goes out to you. You are so strong and know your body and disease process so well. Continue to be the way you are don’t take no crap you have to be your own advocate in health care. You are in my prayers. Peace be with you

    Liked by 2 people

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