Regrouping for now

Over the last couple weeks I have started pulmonary rehab. I go two days a week and exercise lightly with oxygen. I physically can do much more and would like to but my lungs cant keep up. This may help them perform a little better but will do nothing to heal them. Lung tissue is gone once it is damaged unlike many organs of the body. I am also cutting back on the prednisone slowly. As long as it is tolerated. I just started this. Also I have contacted Duke and told them to go ahead and send my records and test results to both Pittsburgh and Cleveland. These are the two places they recommended that I should try and they may actually do the transplant of the lungs and liver at the same time. I continue to pray that this is what I need to do and I feel ok about going. I feel led to pursue this somewhere else. Meanwhile, my pulmonary doctor here in Greenville is wanting me to see a liver specialist to follow up with me to see the degree of damage to my liver the treatments caused. Duke only said that there is enough to have to transplant it too and that it has been there for years and did not appear to me getting worse. I do want to know how extensive it is, if it may be able to heal itself, and what changes I need to make to help the situation. 


So no big moves for now. Just continue to do the rehab and cut back on the prednisone. I should know more in the future from the liver doctor and get some feedback from up north at those two clinics. Do you think its safe for a rebel to go under the knife in yankee territory? Ha ha. Ya know I hear they don't have sweet tea up there. Out of the surgery, recovery and no sweet tea, I think the deprivation of that cool refreshing beverage may just be the worst part. Stay tuned for more updates over the next few weeks.

Black Friday

Friday I got the call from Duke in regards to the tests they had done the previous week and the conclusions that the board of doctors had made. I had been so optimistic up to this point but with that call came some crushing news. I am not going into specific detail simply because I don't know the specifics yet but the purpose of the call was to inform me that my liver had been damaged over the years from all that my body had been through. This meant that they would have to do both a liver and lung transplant at the same time. This is done commonly but given my medical history, Duke feels that I am too high risk for them to do this. I didn't know that my liver was even damaged but they say there is a "substantial" amount of "involvement" in the liver. Most likely from the infections and the graph versus host from the stem cell transplant from when I had Leukemia. There are several decisions I will have to make over the next few weeks. I just pray that I continue to feel led in one direction or another. I obviously very crushed by this news and honestly my spirit and heart are broken right now. I trust that I will come around as I always have. I am just so sick of this battle that has been going now for eight years this May. I don't know if this road I am on is a dead end or what but as long as I feel His peace and guidance I will continue to follow my GPS (Gods Planning System) until I arrive at my destination. Of course I feel frustrated and angry. I just saw something on TV yesterday where this guy was on death row for killing his family and all I kept thinking was "why dont this crap happen to THOSE people?" over and over. Meanwhile those of us that deserve to live have to struggle. One of the many things that don't make sense on this earth and even more reason to long for the day that we don't have live in this. So thats all for now. I will continue to keep you all updated.

A bumpy road taken

This week has been a bit rougher than anticipated. The first day was long and tiring but everything went well. They had me do another full pulmonary function test. This tells them all about the performance capabilities of my lungs. Volume, how much I can blow out in one second and a couple other things. I got everywhere from 25% to 36%, which is well within transplant range. The rest of the day was a visit with the same doctor I saw on my first visit, a CT scan of the chest, abdomen, and pelvic region. They also scanned my diaphragm to make sure that it was working properly to withstand a transplant. That’s pretty much the highlights of that day. Also I might add that Dr. Snyder had a much better attitude this time after looking at all the medical records that had been sent to her from my oncology doctors in Winston Salem that have been seeing me since 2002 and did my stem-cell transplant when I had Leukemia. She laughed and said she was surprised it did not break their fax machine. Said it was very helpful information. It was 150 pages long. Hey, she said to send my records. You get what you ask for.  Ha ha.

That night I got the norovirus. Most likely picked it up in the hospital. I was running to the bathroom every 15 minutes. This could not have come at a worse time. I had a heart cath scheduled for the next morning at 7am. That night felt like it was 50 hours long. There is no worse feeling than a stomach virus. The Raleigh/Durham area had a big outbreak and there were signs all over the hospital that talked about it. Come 6am that morning I had stopped my rushing to the bathroom but was so weak and dehydrated that the heart cath was out of the question. I stayed in bed and drank Gatorade and chewed ice to start the rehydration process.

Thursday morning came and things looked much better. I had an MRI at 7am and then a kidney filtering test at 9am. This all went fine but by the time we left at 1:00pm I was worn out and had been for about an hour and a half. Still pretty weak from that bug. At least it got done though. We were able to get the heart cath that I missed rescheduled for Friday at 7am. This way we would not have to come back in a week or two just for one test. We were able to keep our hotel room for one more night and not have to move so that worked out too.

So that’s how the week has gone. It has been a bit rough thanks to that virus but I am over it now with the exception of still feeling a little weak. I have not been posting updates due to feeling so bad but this pretty much sums it all up. Thanks to everyone checking in and the positive comments and countless prayers.  I am posting this and then going back to my room to get ready for bed. We have to get up awful early to get to that heart cath tomorrow and those who know me know that I don’t do mornings well. I run into walls and don’t make ANY big decisions for my safety and the safety of others. Ha ha. Good night all.