Update from Chapel Hill

Well, I spoke too soon and I should have known better!! I did get a good report from the doctor yesterday and I seem to be over all of the pneumonia and infections but, and she is right, I am still recovering. I must be as strong as possible going into this surgery so that I come out of surgery as strong as possible and without complications. So, after the initial disappointment, I agreed. They want to see me again in two weeks and will check me out again and make another call at that time.

I went to the rehab center 4 days this week and made some progress but not near enough. I am doing well on everything but walking. Lots of work to do on this beginning Monday. I should be able to go 5 days this week. Only one doctor visit with one of the surgeons on Monday afternoon after going to rehab.

So we are still going to be plugging away and trying to get on the list. Several couples that we have gotten acquainted with since here have already gotten listed and have had their surgery and are recovering nicely. A few bumps along the way but so far those have been overcome. I hope to join their ranks very soon.

We are missing our children and grandchildren immensely right now but this is very important so we have to stay focused on it and get it done!! We continue to stay in touch with them via phone and video calls (don’t want them to forget what we look like!!).

That is our update for the week but stay tuned.

Now it is time for me to get caught up with all of you and your blogs! Charley does a much better job on this than I do!!

Update from Chapel Hill

We are still here and plugging right along. I continue to get better every day thanks to Charley, my medicine and getting back to exercise.

I last weighed 107.5 pounds so that hurdle has been taken care of. I finish the latest round of antibiotics on Tuesday morning (Yeah!!). Have already completed the prednisone step down routine. Glad that is over.

Now I have four more days to get to rehab and work on that before going back to the doctor for tests and a checkup on Friday of this week. That is when we expect to hear that we will be listed the following week!! If they find another hurdle for us to overcome I do not know what I will do!!

Keep all those prayers coming. We continue to see folks with lung disease getting their transplants and most are doing well. Some are running into issues and I realize that can happen. I feel confident that I will do well since Duke has not found any other health issues for me since I have been here.

And a very special thank you to all you bloggers out there who keep sending encouragement and prayers our way. We know we do not say it often enough, but we do appreciate it immensely!! I would also like to apologize for not sending more comments along to each of you but I have been very slack in checking blogs lately. I promise to get better about it soon.

Stay safe out there.

Here We Go Again!

Well, we wound up going back to the doctor for a checkup on Monday of this week. On Tuesday they let me know that yes, in fact, I still had some infection in my lungs. They prescribed a very powerful antibiotic that would cost us $3000 if we didn’t have good insurance!! It had better be good medicine you say….. so do I!!! Only cost us a paltry $12.

So I started that medication along with an increased dosage of prednisone (the evil medicine) to get the infection cleared up. Needless to say they will not list me until it is.

The other thing that has to happen is that I have to get back to baseline in my physical rehab. I went back to the fitness center on Wednesday and Thursday. Did not do so hot on Wednesday but did better on Thursday. Had to go to the clinic Friday, and was having a very bad breathing day, so skipped exercise again.

Have to go back to the clinic to get some blood work done and get my feeding tube extended (due to weight gain) on Monday. Not sure how much rehab I will be able to do after that, but hopefully will do some. Then on Tuesday we will get back to a daily routine.

After these two things are cleared up I should be listed. I know, I know, I keep saying this and it doesn’t happen….. but you have to keep the faith that it will and that Duke is doing what is best for me. They will not do a transplant with obstacles like I have right now and after the initial disappointment I realized this.

So Charley, Cheyenne, Sadie and I will continue to live here in Chapel Hill as long as it takes me to get new lungs and get healed up so that I can go home!!

Everyone have a great weekend!!

Our First Week of June

We are still here in Chapel Hill, NC struggling to get back to the fitness center to work out. I cannot even get one lap of walking in without stopping for a long rest due to my extreme shortness of breath!! And walking is the most important exercise for me to do well…..

Talked to our coordinator about this and that I suspect that the antibiotics did not completely clear up the pneumonia and fluid in my right lung. So I have an appointment tomorrow morning to get all checked out and see what is wrong. After we get this figured out the goal continues to be to gain the last 3 pounds that I need to gain and get back to exercising 3-5 days per week.

When I reach the weight goal of 105 our hope is that I will be placed on the list for a double transplant. We will continue to keep our blog updated weekly, but if we should get listed mid-week, you can bet that we will let you all know right away!!

Our two oldest grandchildren successfully finished up another school year this week. Both of our children and their families are going to the beach together next Saturday for a full week. We know that they will have a grand time. Wish we could be there with them but, what we are doing is more important right now. We will have lots of time to join them later for this!!

Stay tuned for additional updates, hopefully coming soon!!