I’ll Take It As A Good Thing…

Three months since I’ve been in Iowa City and it was a long day, but that’s to be expected…especially when we have a couple of appointments. First off for some of you who might have known…Nathan had his eye surgery today. The surgery went well, however, when he returned back to his room he continued to experience a lot of eye pain and his blood pressure dropped so recovery took a little longer than planned. Thankfully he eventually became more comfortable and was ready for discharge!

I also had a heart appointment today and it was uneventful…which is a good thing…for the most part! My cardiologist discussed the condition of my lungs and did not feel that was the cause for my recent symptoms. He did suggest we could do a scan to recheck my heart but expressed a lot more concern over the amount of radiation I have been exposed to from all of the scans I have received, especially over the last four years due to the progression of my illness. He also suggested we could do another heart cath to get a more accurate picture instead of a scan but of course that is more intense and I’m really not up to it since I just did one in December. Not to mention that procedure is very uncomfortable and carries plenty of risks as well.

While my symptoms are a little more frequent now, they are manageable so we decided to hold off on any further testing and just continue to monitor. 

He recommended I follow up with my SVC doctor and if that doctor has any concerns then they might go ahead with a scan. I was also encouraged to call him if my symptoms become worse. 

The only downfall to waiting is that monitoring the progression through Ct and lung scans are key for this illness. I am now at the point though where doctors are concerned about all of the radiation exposure causing different health issues so they do not want to do any type of lung or heart scan unless my symptoms indicate a significant change in my fm. 

Yet by not doing the scan I risk the fm progressing too far to the point where they possibly might not be able to intervene because it’s too late. A constant battle we face with rare illnesses…trying to figure out which option will do the least amount of damage to my body…and sometimes that’s a sucky thing to have to choose.

But regardless, today I will consider this appointment a good report! I mean yes, my symptoms have slowly been progressing again but like I said before, as long as I take frequent breaks and rest throughout the day, then I am able to manage. I will rejoice in the fact that while I still have bad days, they are not the worst of my bad days! 

I am attaching one of my favorite songs as I rarely can get through it without crying because of the overwhelming comfort the words bring me. Our worship band just happened to sing it in church on Sunday which gave me assurance that all would go well today…not necessarily because of good test results, but because of the fact that He has brought me so far and I am never alone!

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One thought on “I’ll Take It As A Good Thing…

  1. Becky, Oklahoma says:

    I understand the worrying over not doing the Scans. The only symptoms I had in the beginning with coughing blood, after battling that for two years my pulmonogist sent me to Barnes Jewish and after testing they decided stents could not be done so I had my left lung removed. There was no sign of the disease in my right. Then about a 1 1/2 years later I started coughing up blood again. Went back and they could not stent the lowers pulm vein in the right lung but I was put on meds and it’s been 2 years and so far it’s stable. I always feel like I have a cold and I’m tired all the time. They do not want me to have any radiology testing until I see the pulm doctor in St. Louis and that is scary because by that time it could have progressed. I just turned 38 and I feel like a old woman at times. I really hate this disease because it makes you hate what you’ve become and long for what you were.

    Liked by 1 person

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