Thursday, October 20, 2011

What a Lucky Person I Am

As I was leaving the hospital after the last of 3 medical appointments I've had this week I felt a huge wave of gratitude wash over me. It wasn't the weather- cold and pouring rain; nor the traffic which was stop and go all the way home. It might have been the chicken dinner that was waiting for us which cooked in the crock pot while I was out, but I'm fairly certain it was the fact that I have such awesome doctors.

Cardiology was first on Monday. They were a tad concerned because my blood pressure was on the low side, something that was the norm until the past 18 months. I was instructed to lower my blood pressure medication if I had dizziness or if my BP is consistently below 100 systolic. Otherwise, they are very pleased with how I am doing and encouraged me to keep up with the exercise and yoga.

Next I went to the CF clinic. Amazingly, my PFTs weren't down as much as I thought they might be, which was great news. My physician thought that there might be some residual systemic inflammatory response after my root canal/extraction adventure and that made a lot of sense. In addition, it's allergy season for me on top of the fact that I have let myself get run down over the past several weeks. Ten days of Levoquin and a month of inhaled antibiotic with more rest and exercise. I left with my instructions feeling a huge sense of relief that I wouldn't need intravenous antibiotics. Whew!

The third, and final, appointment was with my PH doctor. He'd like to try me on a once a day anti-PH medication instead of the 3xday pills that I'm currently on. Popping an extra couple pills three times a day isn't a big deal in the scheme of things, but the fact of the matter is that it's a challenge for me to remember that mid-day dose. Taking the pills with meals doesn't help me much because I often eat 4-5 times a day and don't stick to a 3-meal a day schedule. I did  buy a medication alarm which helps tremendously, as long as I'm within earshot.

So, one dose per day with the same (or possibly better) effects will be a huge plus. The down side is that there can be more side effects, but thankfully they are short-lived for the most part. I've had some muscle/joint aches on the increased dose but as predicted they did resolve within 2 weeks. There isn't any official data on how this medication works compared to my current one, but both the doctor and nurse thought that people tended to notice more benefit and did better on it. Sign me up! It will take several weeks to get insurance approval and receive the medication from my mail order pharmacy, but at least things are underway and I should have it by mid-November.

The doctor mentioned that there are several more CF patients who have been referred to him in the past 6 months, confirming his suspicion that this type of PH is indeed linked somehow to CF. This is an area that will need to be explored and studied and is certainly an area of CF medicine which will be expanding in the future as the population ages.

My feeling of extreme gratitude on the drive home was because my doctors (all 3 of them!) and I were able to figure out what was going on and - the best part- are able to treat it. Yes, I still need oxygen for strenuous activity, but for routine things and just strolling around I'm able to get by without it.  If not for this dream team of doctors and their (and my) persistence I might have continued to decline and nobody would have thought it extraordinary- after all CF and shortness of breath in a 46 year old- not a huge shocker.  I know there have been patients who came before me who never had an explanation for a sudden decline. I am incredibly thankful to have been given my life back and to have an answer to my sudden change in health. I am very lucky indeed.

1 comment:

Kelly (Cowtown) said...

That's great Kim! So your newly diagnosed pulmonary hypertension is the main cause of your recent decline? How awesome that they can treat you for that. Very cool. I'm glad it was that and not mac or something crazy.