Our Weekly Update

This week has gone pretty well. Went to rehab every day that I could. Their air conditioner broke down one day and we were sent home (thank goodness!!). And I had clinic appointments almost all day on Friday. I am improving a lot in most of the exercises. The one thing that is still slow coming back is walking. My breathing is just not strong at all.

One of my appointments was just a follow up from all the pneumonia/infection excitement that we have had. Had a chest xray but do not know the results of that yet. Hope to hear something tomorrow. Doctor indicated that she thought I was doing well. She also indicated that I am discussed at each of their Tuesday committee meetings on who gets listed. That makes me feel that I am not being forgotten or overlooked!

I also had a test Friday afternoon that I have never heard of. It is called an EMG and is a test for your muscle and nerve health. This is the test that was ordered after they saw an abnormality in a blood test for my muscles that one of the doctors ordered a couple of weeks ago. Don’t know the results of that either but the two doctors who conducted the test were surprised at my arm and leg strength. One thing that Charley and I have decided is to not get our hopes up about being listed, but to be surprised when it happens!!

On a happier note, Charley and I went car shopping yesterday and came home with a Honda CR-V. I drove it home and what a smooth ride compared to our Super Duty Ford truck!! It will also get much better fuel mileage driving back and forth to Duke every day and will also be easier to park. We are going to need it after we get through my transplant and get to go back home as well. I will be having to come back to Duke for monthly checkups for a while, then quarterly, etc. We had already decided that we would not drag the 5er back and forth for this. We will also be able to tow it, if we need it for any of our trips later.

Stay tuned everybody and keep those prayers coming!! We will be doing a special post when we do get listed!!

We Get Recognized Almost Everywhere We go!!

You know what? We have been here in Chapel Hill / Durham too long!! We get recognized at the clinic, at restaurants, at grocery stores, at Walmart, etc….. almost everywhere!!! Guess that means we have been here too long. But that is okay, it is fun to be recognized! (They might all have a hard time recognizing me after I get my new lungs!!)

This past week has been a good one. I got out of the hospital on Monday afternoon, feeling pretty good about the progress made on my infection. Started back with the pulmonary rehab group on Tuesday. Did okay. Off Wednesday for the fourth so we tried to get rested up from the hospital stay (no sleep while there to speak of – constantly being waked up). Back with rehab on Thursday and Friday and I improved both days.

Still taking antibiotics and will be for almost 2 more weeks. I am also on increased steroids (prednisone) for a few more days. I hope that this will not impede my rehab progress but so far they do not seem to be having an affect.

I will be going back for a checkup and tests to make sure all is well on Friday, 7/13. My plan is to have a good report from rehab when I go. I seriously doubt that they will list me before I have finished all of these medications (the antibiotics should be finished around the 20th).

So this is where we are with my health situation. I do have to brag on Charley again though. He continues to take very good care of me and our two fur babies every day. I love him with all of my heart and soul. And it goes without saying that Cheyenne and Sadie love him dearly too!!

It would be nice if all you folks out there would add two of our new friends to your prayers. Both had their transplants recently and they are having some issues. Their names are Olin and Lonnie. Lonnie had a double lung transplant plus heart surgery. Olin had a double lung transplant. They both seem to be improving but all those prayers do help!!

Well, that gets us all caught up with the world of Sherry & Charley right now. Thank you for all the great comments you have been sending our way. Prayers, hope, and, encouragement always help keep spirits up and keep us fighting hard to accomplish what we are setting out to do.

Quick Update from Chapel Hill

I am so sorry that I did not have a chance to update our blog over the weekend.

Thursday afternoon my doctors from the transplant team decided that I needed to check in at Duke Hospital’s Emergency Room and possibly be admitted. Trying to diagnose and treat me via emails and called in prescriptions simply was not working. We proved that after two rounds of antibiotics!!

So late Thursday afternoon off we go to the ER!! Well, I was admitted and spent the evening in ER waiting on a room. In the meantime they did a chest xray and CT Scan to get pictures of my current situation. Finally got a room and was moved at 12:30AM.

The team got started fairly early on Friday trying to diagnose and treat my lingering infection. To be honest, on Friday and Saturday I was not sure that there was any improvement. But, Sunday was a different story!! I actually walked 10 laps around the hospital floor (they told us that would be about 1/2 mile). I didn’t do this all at one time but did it in groups of 2, 4, 2 and 2. Then, this morning I walked 5 laps in two sessions.

And when the doctors made their rounds today they decided to let me go home!! Joy!!!!

So I am back at home now and feeling so much better! Will be going to rehab tomorrow, off for the fourth and then back at it on Thursday.

So now I am feeling very much like I can finally get on the road to a full recovery and get my rehab back up to par so that I can get listed. I have not weighed yet but do not feel that I lost very much, if any, weight. They kept up with my feeding tube requirements while I was in the hospital.

So, hopefully within the next 2-3 weeks we will finally see me getting listed for my new lungs!!

Thanks to all of you who keep saying those big and little prayers for me out there. It is helping!!

Stay tuned!!

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!!