I had to get a check up today with my pulmonary hypertension doctor. It went well and all great positive news from him. I thought I was going to be able to knit but instead got checked in pretty quick. The nurse that has checked me in the last several times is great and loves to carry a converstion. He asked about how I am doing with this hot hot weather and I just replied that I stay inside all day and try to avoid the heat. He said he tries to but needs to work on his lawn but whenever he goes outside to get started, he just goes right back to the AC. I do not blame him. It has been so hot here the last couple of months that even our weeds are outgrowing the flowers. Bummer but this gardener is not strong enough to deal with the humidity.
Moving on... so the nurse got my vitals andn everything looked great and then came in my PH nurse who checks up on me before the doc comes in. She is one of the best nurse on this world. She helped me get through the scary times of when I got first diagnosed and is always there for support and any questions I have for the doc. She came in a followed up with me on how things are going and I told things were well and moving along good. I had some questions for her and she waited and answered them patiently.
Next was the 6 minute walk, this walk determines how I am feeling after doing a 6 minute walk up and down the hallway. The nurse counts the number of laps I do and then askes me a few questions on how I feel and checks my oxygen saturation. The distance is compared to my last walk to see if there is any improvement or not. I think I did well on this walk since when the doc passed by while I was doing this commented that I am 'tearing it up'. I take that as a compliment from my doc. The Oxygen Saturation number lets them know how my heart is working after being worked. My was awesome since it was at 98 and ended at 98 (100% saturation is perfect).
Then lastly the doc came in and talked with me a bit and asked about meds and any side effect and also how my activity level has been. Meds are doing well. Side Effects are minimal other than the first bite of any food jaw pain (all PH patients on IV meds knows what I mean). My activity level I think has increased since the last time I saw him in March. I am able to do the Dance Central game for the XBox Kinect. I have been impressed with myself that I can do the hard level on several of the songs. I have a feeling I will be doing tons of DC with my sister when she comes down next week =0)
So moving on... So there was one concern that I wanted to bring up to the doc that happen last week. I had a pump/ user malfunction on Thursday night when I put in my new med cassette. I did not know about it and there was no alarm that went off that there was any problem. So life went on, me and the hubby went to a Doc Watson concert on Thursday night and everything felt okay then Friday went well. I just stayed home all Friday because I felt kinda tired and I thought that was the late night the night before. Well Friday evening I was changing my med cassette and noticed the old one (from Thursday night) was full and not as empty as it should be. I realized that the tubing on the old cassette was skewed and did not distribute meds to me for 24 hours. Now normally if someone on PH IV meds are without it for a period of time they can die from it. Luckily I did not but I knew after I had the new cassette of meds flowing back into me that I was without meds for a day. I felt flushed, nausea, and headache galore. By Saturday evening was feeling almost normal but the feeling of side effects took me back to two years ago when I got first diagnosed and put on the meds. It was a scary feeling. So I told the doc all this. He was suprised that I survived the whole 24 hours without my IV med and was intrugued on the malfunction. I think I actually made him speechless and I don't think that happens too often.
So we discussed that concern for a bit then moved on to the exam of checking my heart and listening to my lungs. Then pressing on my belly to check my fluid retention, don't ask me how he does it because I did not understand. But several times he put his hand on my chest to feel my heart to determine if the beats are straining and commented that maybe I am cured after my 24 hours without meds. I guess he said that because my heart did not feel like it was straining too much. He also said that maybe down the road he can take me off the IV meds but does not want to do it at this time. I told him I would be excited when that day comes but I want him to be comfortable with my stability because I would hate to get off of it and then my activity level drops and I have to go back on it. If I am getting of this med, I want to be off forever. But I may be taking another form of it in oral pills. I am fine with that. Just to hear him say that I may get off this med made me so esstatic that I ALMOST hugged him. I will save that hug for when I get off the med.
Again a long entry but had to report about my doc visit. So to all PHriends, there is hope to get better from this disease and just live your life as you can. I hope all of you have a great week and stay cool in the AC!