I guess it would be safe to say that there was bad news and good news from this last visit to Cleveland. Doug and I did leave Sunday afternoon to spend the night up there even though my tests and appointments didn't begin until 9:30. I find this to be the best because I was less exhausted yesterday. Last time (in February) we drove up that day, did the appointments and drove home and I was feeling horribly then. Another thing that really helped this time was that I gave in to having Doug escort me around in a wheelchair. I kept putting that off as long as possible...but over the last few weeks I have just had no energy and have been more short of breath then usual so he had the pleasure of wheeling me around. :) I also used Cleveland's O2, which was continuous rather then the burst O2 that I had been using when I go up there. I think that made a big difference as well. Besides this nasty cold/cough I've got started I actually felt pretty decent.
Bloodwork was first on my to-do list and this time only 14 vials were taken out of my arm! :) I had my chest xray next and when I came out from that, Doug was talking to a woman in a wheelchair that also had oxygen on. We were in the actual waiting are to have our xrays...he's never gone back with me until this time because I was in a wheelchair this time. Anyway, this woman was older and she said she was going through testing to get a single lung. She asked about me and I said double. She said that she was "too old" to get a double. Then there was another woman on the other side (waiting to go for her xray) and she peeked around to ask if we were both waiting to get listed for lungs. We both said yes and she said she was 7 years post double lung transplant! She said she is doing well, which was very promising. I asked the women what their diagnosis's were. The older woman said pulmonary fibrosis and the other woman said Bronchiolitis Obliterans! I lit up and told her that was me!! She said she has rheumatoid arthritis and that they think her B.O. was caused by the RA. Again, I said that was me!!! She is 57 now and said it was the best thing she did. She said that her B.O. came upon her just all of a sudden and she declined pretty rapidly. I told her mine came on pretty quickly too. Anyway, we exchanged information and I hope to talk to her more and get more information from her!
So the bad news is that my lung function numbers all went down. Like I had mentioned in a previous post, the main number they look at is my FEV1-Forced Expiratory Volume in One Second - The amount of air which can be forcibly exhaled from the lungs in the first second of a forced exhalation. A normal person is close to 100%. My number for the past few visits has been around 20%. I think when I was tested in the very beginning of all of this (back in Sept 2010) this number was 36%. Anyway, that number dropped to 16% this time. Funny thing was that I thought I did pretty well on the test. I was sadly mistaken when I saw the results. :( Also looked at is the FVC-Forced Vital Capacity - The amount of air which can be forcibly exhaled from the lungs after taking the deepest breath possible. This number back in February was 59% and yesterday it dropped to 47%. My arterial blood gas was lower this time too. Blood is taken from one of the main arteries in your wrist and it is the most accurate reading of how much oxygen is in your blood. In February mine was 90.40% and this time it was 89.30%. Normal people should be as closet to 100% as possible...when you hit 88% or lower is when you need the supplemental oxygen. I had been on 3L at the clinic up until this point and when I got to the lung function lab, I took my oxygen off and did the breathing tests before she did the blood draw to make sure she was getting the reading on room air.
I did my 6 minute walk and I actually thought I was doing really well with it. But, I was wrong again. In February, I was able to walk 665 feet (which was down from the visit before) bu this time I was down to 570 feet in 6 minutes. (No running marathons in my near future!) ;) In February they started my walk on room air and quickly I had to be put on 2L...this time though she started me at 4L and that is where I stayed for the duration of the walk.
Got a quick bite for lunch and then headed to my next appointment which was with the rheumatologist. He didn't really do a whole lot...just assessed me. I told him I don't have a rheum dr. back here that I like very well and wondered if I could see him, or if he had any recommendations for me back here. He said he would check into it for me. So we'll see where that takes me. For now, I guess I will see them up there since I am going every few months.
Next appointment was with my transplant physician (Dr. Lane) and my coordinator, Suzanne. Love her! She gave me a big hug when she came in. She got all of my initial info together and ready for Dr. Lane. I told her about being more short of breath, high pulse, low O2....especially over the last few weeks. Also mentioned my lovely cough, phlegm production and the possible need for an antibiotic. Got another hug from her when she left the room and Dr. Lane took over saying that since my numbers have all dropped that he thinks it is time to present my case again to the board. So that's the good news! They are finally going to re-present me! He said that if I do get listed I will likely be low on the list. They do lung allocation scores and take a lot of different things into consideration when coming up with a number. I am still functioning somewhat ok, so I would likely be low on the list. This number can always go up if I would become sicker. He said as far as a wait, obviously, you just don't know...but could be a few months, could be a year. I told him my main concern with getting listed and the waiting part was because I was AB+ and thought that would work against me since it is the more rare blood type. But he said being low on the list and having the rare blood type could actually be an advantage for me. He said those higher on the list with more universal blood types can't get my AB+ lungs, so it would "trickle" down the list to me. So my wait might not be long at all. He prescribed me a 7 day antibiotic for this lovely cold I started at the end of the week last week. Doug just now went to pick it up for me...I have been coughing so much the muscles in my stomach hurt! :( I hope that the antibiotic kicks in real soon because I am afraid I may have to go to the ER if it doesn't in the next day or 2. I was about ready to go last night because I couldn't stop coughing and then my pulse was going high. I had a heck of a time.
My last appointment for the day was with Dr. Koval in infectious disease. This is to check my IGg and to see if I need anymore IVIG infusions. It just so happens that when my bloodwork was done earlier that they didn't do the test for my IGg so they had to add it in. I was supposed to have results this morning, but I am still waiting to hear. She told me that if it is under 400 they will have to do another infusion. I will get my blood checked every 4 weeks to see what my levels are. If they are above 400 she said that is fine. But if they are under I will have to keep getting the infusions. I also found out that my Hep B series finally took! Only after 5 tries!! However, I also found out that it may have only took because of the IVIG infusion that I had. Since the infusion is made up of over 100 different people's antibodies it is very likely that my positive result came from one of them. :( But it is positive nonetheless and we will just see where that will take me. I still don't know if the pneumonia shot took yet or not. I won't know that until Friday.
That's pretty much my day in a nutshell. We tried to leave Cleveland about 4:50, and what should be about a 10 minute drive to get on the interstate took us almost an hour because of all of the traffic. We drove through some really nasty weather and had to drive no more then 45 mph on the interstate....people were driving with their hazards on and a lot of people were pulling over. It was crazy. We stopped at O'Charley's to get a bite to eat and let some of the storms pass. The food was very yummy!! We started back out on the road and Doug ended up pulling over to let me drive because he was so tired. He didn't get much sleep the night before in the hotel. Usually I am so beat from the day, but since he pushed me around in the wheelchair and I was on continuous air rather then the bursts of air I drove the rest of the way home. I was glad he was able to catch some z's. :)
Now it's just another waiting game. I will wait for my IGg results to see if I need another infusion. I will also be waiting to get a phone call to see if I am listed or not. Dr. Lane told me it would not be this coming Monday, but hopefully the Monday after that. Hopefully before month's end I will know if I am on the list or not.
Kara the Caterpillar may be weaving that cocoon here soon after all! :) Thank you everyone once again for all of your love and support! :)
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