Passed the 3 month point. Feeling good. Just disappointed with the level of stamina, or lack of stamina. Still weak on the right side, but overall I feel good. My appetite is good, maybe too good. I've gained another 3 pounds. Better start slowing down. With the energy level low, I don't burn as many calories as I need to maintain a low weight. Trying to maintain at 175 lbs, I am at 174.
Linda and I went on a road trip to Kentucky to visit our good friends Mike and Gloria. They just transferred to Louisville from Portland Oregon. Beautiful house, beautiful area and such good friends. Thanks for a great time. We drove up on Friday and returned Tuesday. Good trip, except it took two hours to go through Atlanta. The trip turned into a 15 hour ordeal. Fortunately we broke it up into 2 days.
It's hot here in Florida and that makes it more difficult to get out and do things. Especially in my condition, I have to cover up and protect myself from the sun. Hat, long sleeves, long pants and sunglasses are usually the dress to do outside tasks. My immune system is compromised by the medications that I am taking. Remember the doctor said that it is not if I will get skin cancer, it is when will I get skin cancer. Boy, if that's not a pleasant thought. Speaking of doctors, I have a lung biopsy on Tuesday the 8th. Wish me luck.
It seems that every week I am ordering more medicines, what a mess. Thanks to all for their support, it really helps offset some of the medical expenses. Hopefully at some point, I can repay your kind generosity.
At some point in the near future I am going to explain, in detail, the psychological impact of this disease, the transplant and post transplant. You don't know how many times you think about death throughout the process. I mean an intimate look at your mortality, and whether this is your time to go or not. I never saw the white light or anything, but I felt sure that I couldn't take anymore. But that is for another day.
An interesting perspective that I heard this weekend is, when you are beginning to get frustrated by someone, step back and look at them from another angle. Not physically! Look at them as a neighbor or mother or brother, not as a salesperson or work mate. Try to understand there perspective.
Wednesday, June 2, 2010
Tuesday, May 25, 2010
Day 88
Okay, so it's the 88th day since my bi-lateral lung transplant.Two days from the magic 3 month mark. Remember they said I will feel twenty years younger and ohh so much better at the 3 month mark. I feel good, but I don't feel twenty years younger. Still gimpy on the right side. Now I have a burning sensation in my right hand. I asked the doctor at clinic last week and he said it's because I am gaining strength in the hand, but cautioned me to keep an eye on it. What the heck does that mean? If it falls off let him know?........... Gaining weight, up to 171lbs. That's a grand total of 12 lbs gained.Gaining strength, walking and working out with a exercise ball and working out with Nintendo Wii. Gaining energy, still not jumping out of my seat but getting more stamina and energy. Overall, it's all good....Went to the picnic for lung transplant recipients and those waiting for lungs. See pictures on blog. Heard a lot of stories. We are all thankful for this second chance, but I can tell you everyone has had their challenges. Interesting observation by Linda, my wife, most of the recipients look great. You wouldn't know that they had had a transplant.Oh, and I found out that I was #201 transplanted. They had done 200 lung transplants at Tampa General Hospital before me. The program is 5 years old. That's pretty amazing. Actually, the ability to do 1 is amazing to me..............Had to go to Tampa General today, my Prograff level was low at the last clinic so they increased my dosage to 8 pills of Prograff daily. Prograff is the main anti-rejection medicine, so it's at the top of the list in importance. I can't tell when the level is low or okay. There are no effects I can feel..............I go June 8 for another lung biopsy. They say this is a routine procedure, but if they use anesthesia and go down into your lung and snip a piece I don't look at it as a routine procedure. But hey I better get used to it because I will have them on a regular schedule forever...........My car broke down over the weekend, the transmission went out. Sometimes you just have to laugh because you know that even when you think you are on your way back down the road to recovery that around the next corner there may be another challenge. Oh well that's life............Went out and mowed, edged and trimmed the yard today after the hospital trip. I was able to complete this entire task without having to stop and rest. Now that's progress!.............I hope this doesn't sound like Donnie Downer's blog. I really am in a good place and very thankful for all the support. I am a very fortunate person, I got a second chance at life and I have lots of love from family and friends and even people that I have never met. I guess as I always say patience is a virtue that I never quite acquired. Today's task. Wave at somebody, they probably have had a worse day than you.
Tuesday, May 18, 2010
Day 81
Wow, what a week! You know how your mind says one thing and your body can't seem to fulfill the task. Well that would be me. I have so many things I want and need to do, however, the stamina is just not there. I went out today to do yard work and after mowing the grass I wanted to edge and trim. Too wiped out, I ended up cleaning up and coming inside. Last week I did all of the trimming and edging and cutting and was wiped out for 2 to 3 days afterwards. Patience is a virtue. I must learn patience.............I had clinic yesterday. I think it's really a bitch session for me with the doctor and nurses. I tell them all that ails me, and they try to figure out what to do about it. I am actually doing well except my energy level has been way down. The doctor checked some of my previous lab work and found out that I was no longer a man. Well, my testosterone level was non-existent. The two indicators were both at or below zero. Go figure. I got a testosterone shot and expected to see a dramatic difference right away. What did I say before, Patience. Well, finally today I am feeling my energy level beginning to rise. Thank God!................I go to Clinic, which is at Tampa General Hospital every 2 weeks and they draw oodles of blood for lab work every time. I get a call a day or two later with results. Every time lab work comes back great, which indicates no rejection and no infection.... They do alter my medications from time to time. Remember, I now take approximately 40 pills a day and Insulin shots to the stomach twice a day. These will be reduced over time, but I will take anti-rejection pills for the rest of my life. Hopefully , when they reduce the steroids that I take, I will stop the Insulin shots as well. Please, I am not looking for sympathy this is just information that I am sharing. I am very lucky. I got a second chance. Many people don't get a second chance and many are much worse off than I am................Are you an Organ Donor? Think about it............They are having a Transplant Picnic on Saturday that we are going to. The doctors nurses and previous transplant recipients as well as potential transplant recipients will be there. Should be interesting to hear the stories. Hopefully I can get some pics and post them. I did put some more recent photos on the blog last week. If you get a chance check them out at http://jonriordan.blogspot.com/.
Sunday, May 16, 2010
History VIII
Here is an amazing fact, that I forgot to mention. Every day that I was in the hospital Linda was right there with me. She even stayed over night in my hospital room on the couch. She was right there to help with my recovery. It's amazing how important it is to have someone you love so much, right there by your side, going through everything you are. It makes you want to work that much harder to recover. Now, don't get me wrong, she didn't look when they drew blood or inserted another IV, she's a little squeamish. But everything else she was right there for. She was definitely my Rock...... Every 12 hours I had a new nurse and a new assistant to the nurse. Most were very knowledgeable and all were very caring. I believe I got the best care anyone could hope for at Tampa General. No, they didn't pay me for this advertisement........ I also had a great surprise when my brother, Jim and his daughter, Lauren, came to visit me for a couple of days while I was in the hospital. They didn't know what they were in for. I looked worse than the second picture in this blog......... While in the hospital I couldn't talk much nor very loud, as my vocal chord had been paralyzed by the stroke. So, another surgery was suggested. This time they wanted to add a filament to 1/2 of my vocal chord to allow for better vibration which they thought would help with my voice. The doctors said it is not a permanent fix but should last six to twelve months, at which time we will discuss the next step. I agreed to the surgery and they did it. Unfortunately for some, it worked and I am able to talk at almost the normal range..........The last operation, before discharge is a lung biopsy. I should be used to them by now, but they are a bit uncomfortable. They stick a long tube-like device down your throat, after numbing it, into your lungs and snip a piece of your lung for the lab. It is about a twenty minute procedure and I will have one done every 3 to 6 months for the rest of my life. Oh what fun....
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