My first set of PFT's were 39%, to which my doctor replied "Your PFT's have always been a little hard to explain". This just goes with my freak-of-nature theory :) I think more likely, though, is that somehow, and some way, this is part of God's plan - to continually surprise even my doctors! My second set was 37%, and I think that is probably more accurate and that I just had a particularly good day the first time.
I've mentioned before that the transplant team wants me to lose some weight. Well, instead I gained about another 10lbs. I talked to my endocrine docs and we agreed that it was due to my hypothyroidism so they increased the dosage of my meds. Hopefully, in the next couple of months I'll see an improvement in my energy level and these extra pounds will come off. It will certainly help me breathe better.
This past Wednesday I had the right-heart cath done for the transplant work-up. It was an interesting experience to say the least. Dr. Hornick stopped by antibiotics on Tuesday and that night and Wednesday morning I had to drink Mucomyst in order to prepare my kidneys for the contrast dye used in the procedure. I think I've talked about that stuff before, but for a refresher, the stuff tastes and smells overwhelmingly like rotten eggs. It is the WORST stuff I've ever had to take.
Anyways, I had been told that they would go in through the artery in my groin so I was REALLY not looking forward to this procedure. That day, though, the doc came in and informed me that for a right-heart catch they go in through a vein in the neck. I was incredibly relieved to say the least. About an hour later my nurse came in and said she had to "prep my groin" for the procedure. I said "uhm, WHY?". The doctor came back and explained to me that they have to get certain pressure readings and if they can't get a proper reading through the vein in the neck then they have to do the artery in the groin also. So already I was having a roller-coaster of emotions. It turned out they needed me down there right away, though, so my nurse didn't end up doing the prep.
Once down there I had to change into a hospital gown since I always wear my own clothes when I'm in the hospital and then lay on the table. They prepped me (not one of the shining moments in my life!) and after about half an hour got the actual procedure started. They gave me 2 shots of a local anesthetic and started to put in the IV catheter. Even with the 2 shots I was still feeling the cath go in, which was somewhat painful, so they gave me another shot. With each one I felt a prick and then a burn as the anesthetic went in.
The whole thing was fairly uncomfortable. I had to lay on my back with my head turned all the way to the left so by the end of the procedure my shoulders and neck were stiff. They also made my heart beat extra beats 3 different time which kind of feels like a sudden rapid heart rate. I got an apology after each one since it did feel really strange. While the cath was in I also did a 2 minute breathing test into a computer. After about 30 minutes of pushing and pulling the catheter the whole thing was done.
All the people involved were incredibly nice. One nurse had me hold on to her hand for most of the time and squeeze when it was painful. She kept asking me how I was doing and telling me not to be so brave. Which I really wasn't. I cried a little at one point and concentrated on breathing the whole time to keep myself from completely breaking down. It's not that it was a horrible experience, but it was new and I didn't know exactly what to expect so I was nervous. I knew if I started crying a lot I would start shaking and didn't figure that would be too good while a wire and catheter were near my heart. :)
I was nauseous and had a big lump on my neck as a result of the test, but was really glad it was over. After a couple hours, Jake had all my stuff packed up and I was discharged from the hospital. We spent the night at a hotel in town, ate pizza, and played a new Monopoly game. It was good to relax together for the night.
On Thursday morning I had an appointment with one of the transplant surgeons, Dr. Parekh. He explained more of the risks involved with the surgery, and answered our questions. He is a really nice man and I know I'm going to be in good hands. After the appointment we went out for lunch, did a little shopping and headed home.
As far as I know all I need to do now is finish my vaccinations and start Pulmonary Rehab to gain as much strength before surgery as possible. I'll do that for 12 weeks and then my plan is to use a personal trainer here in town until the surgery. He will send regular reports to Dr. Klesney-Tait. She requires this so that she knows I'm keeping up with the program.
I need to talk to Jana Beaver again to find out if that's all I have left. If it is, then when all the vaccinations and rehab are done, my case will be presented to the transplant panel at a Monday morning meeting and all the members have to agree that I'm a good candidate for transplant. If they all agree then I am immediately put onto the list and then it's a waiting game.
Thank you all, once again, for your support and prayers throughout my life and this process. This is not a burden I can carry on my own, and I am very thankful that I have so many of you helping me walk this path.