Unfortunate News

It is with great regret that mom passed away yesterday. She put up a fight that surprised all of us. We appreciate all of the support from all of you and know that she is in a better place. Please see below for the obituary we will post in the local paper in SC.

Thank you,

Dilworth/Price Family

Sharon Morgan Dilworth, 62, of Columbia, SC, passed away Friday, November 9, 2012.

Sherry was born in Seneca, SC March 11, 1950. Sherry graduated from Walhalla High School in 1968.

Sherry retired from CSC in Blythewood, SC after 34 years in 2008. Since retirement she and her husband enjoyed time traveling the country in their 5^th wheel.

She is survived by her husband of 42 years, Charles Edward Dilworth, her son, Jason Edward (Duffie) Dilworth, her daughter, Stacey Dilworth (Lee) Price and three grandchildren. She is also survived by her mother, Lois Green, father Ralph Morgan, sisters Pat Gasque and Melissa Cullis.

A memorial service will be held on Tuesday, November 13, 2012 at 4:00 pm at White Rock Baptist Church in Chapin, SC.

In lieu of flowers, please donate to the COPD Foundation at http://www.copdfoundation.org/TakeAction/Donate.aspx.

Still hanging in there…

Mom pretty much stayed asleep all day and night from Friday, Oct. 26th until Friday, Nov. 2nd. Dad had not talked to her in about a week. This past Friday evening is when she really started to become more alert and stay awake longer. She was weak and groggy from the surgery. She wants real food, to go home and a shower. Bless her heart!

On Wednesday, Oct. 31st they found bleeding around her spleen. They went in to repair one spot and ended up finding and repairing three spots. This stopped all of the bleeding.

The infection that she has in her blood is not getting any better and is growing. They have changed her antibiotic to something much more “lethal” to try to get it under control. The potential problem is that it could cause harm to her kidneys. We will know more this Wednesday how the antibiotic is working and how her kidneys are handling the medicine.

We are hoping and praying for the best and we appreciate all of the support from all you bloggers!

Updates from Duke

Well, we found out at about 4:30 yesterday afternoon that Mom needed emergency surgery to remover her colon or she would not survive. We were not sure that she could withstand yet another MAJOR surgery. We, along with the doctor’s help, were able to ask her if she wanted to “give up” or “go for it” and she said “GO FOR IT”. That is what we did!! She is a tremendous woman with unimaginable strength!!

The surgery lasted about 3.5 hours. The surgeon said that she did well. They took out her gall bladder also. She was doing well when we left last night.

This morning, the doctors told Dad that she was doing better than they expected due to the trauma she has endured over the past few weeks. They kept her sedated until around lunchtime today. She is still sleeping and groggy but doing very well.

Thank you for the continued prayers and support. It helps us and her more that you know!!

One step forward, TWO steps back…

This is Stacey, Sherry and Charley’s daughter, again.

Mom is not doing too good. She had a CT scan done Wednesday. It showed that her lower GI (bowels, colon, etc.) are not working properly. They had to take her off of the feeding tube due to this problem. She is only taking Tylenol for pain.

The doctors told us that the problem could be solved with surgery BUT Mom is way too weak for surgery. She has been through A LOT these past couple of months. Yesterday was a pretty rough day and she was not awake much. They did another CT scan this morning and it shows a slight improvement from yesterday.

Basically, we are going to wait a couple of days to see if she continues to improve on her own or if we need to try the surgery.

We encourage all prayers for her healing and for her not to be in pain or suffer.

We hope that she improves and we do not have to try a risky surgery.

Thank you – Dilworth/Price Family

Sorry it has been so long…A lot has happened

Let me start off by saying that I apologize for the delay in the updates. This is Stacey, Sherry & Charley’s daughter. A lot has happened since the last update on here. All chest tubes have been removed, which made her more comfortable!!! She had to stay in ICU until she no longer needed the ventilator. She needs the ventilator to decrease her CO2 levels. Up until last week, that was the only thing keeping her in here.

She began having stomach pains and they tried to get some fluids out last week. It was not enough to work with then. They were able to get some fluid out of her stomach earlier this week and culture it to see determine the substance.. It showed she had peritonitis. Her stomach pain increased two fold on Thursday so they did surgery to ensure there was nothing “leaking”. They were not able to find the source of the fluid but did clean out the area. They “think” the problem fixed itself.

My brother, Jason, and I got here around noon yesterday and Dad went home to relax. She was groggy from the surgery still but doing good. We left around 6:30 last night. They put her on the ventilator for rest last night.

Today, mom is doing pretty good. She had a chest xray this morning and it looked good, according to the doctors. We walked one time already this morning and plan on walking more today. Her stomach hurts where the incision is but they are managing the pain with medication.

Ups and Downs

Boy, we’ve had a lot more downs  than ups lately! Sherry is back in ICU because of high CO2 levels last weekend, but now seems to have turned the corner yesterday and today. She was on the ventilator until yesterday when they put in trach. so the vent tube could be removed. She is a lot more comfortable without the tube and being sedated all day Saturday and most of Sunday. She is now awake, alert and wanting to be moved to a regular room. They have also removed a chest drainage tube today and has only two tubes left. The doctor was by this morning and the only thing he said was to get her walking, which she has done 3 times so far today. Our daughter has come to visit us this week, so I’m taking advantage of her and leaving the hospital early and getting a little rest. Hopefully she has “turned the corner” and is on the way to recovery so she can finally come home. Thank you for your patience for not updating the blog more but soon she will do a better job than me.

Still Here

We are still in the hospital dealing with a couple of issues and hoping to see the light at the end of the tunnel soon. Sherry had to go back into surgery on Labor Day because she had some bleeding in her chest cavity and that had to be cleared out, which set her back a couple of days. She was back in her room that afternoon and started her walks the next day. She had 4 laps Wed., 12 yesterday, and plans to get 20 today. She is doing very good, but is disappointed that it is taking so long to go home. She did have one of her four chest tubes taken out this morning, so that is at least the beginning of getting out. She is now “eating” her liquid diet lunch, but she gets any liquid at any time. She doesn’t know it yet, but I will get her to give you the next update soon. Thank you for your thoughts and prayers.

Charley

UPDATE FROM DUKE HOSPITAL

Sherry is continuing to improve daily in spite of a couple of “bumps in the road” over the weekend. She was moved back into ICU Sunday afternoon because of an infection threat and could get closer monitoring. We moved back into a regular room yesterday afternoon after the test results came back and are starting her walks again. We are hoping the drainage tubes are removed from her chest today. This should show immediate improvement in her walking.

Thank you for all your thoughts and prayers and I will continue to update when I can.

Charley

Overdue update

I’m sorry I have not updated for a while, but I have been a little busy lately.( ya think?) Sherry is doing very well and has had no problems so far. She is in “step-down” and is walking laps in the hallway several times a day and the doctors seem to be pleased, but are pushing for more laps. Her attitude is very good and knows the more she walks the sooner she gets to go home. Thank you for your continued prayers for her and I read all the comments to her. I will try to update the blog sooner next time.

New Lungs!!!

We got a phone call yesterday around 2PM while I was shopping that Duke might have a match for new lungs for Sherry and to get to the hospital as soon as possible. I had to rush home to get her and we got to the hospital at 3:15 and was taken to the room to wait for word if they matched. They finally took her to the OR at 10:00PM.

At 6:30, we received word that the surgery was finished and she was in ICU and we were able to see her for about 15 mins  and she looked great. Her report was she came thru the surgery great and had no problems. We should be able to see and talk with her late this afternoon and she might be able sit up some also.

Thank you for all your prayers and thoughts  in the last few months. I will bring her the ‘puter and let her update when she can. I’m not too good at this.

Lazy Weekend

Well, Charley, the 2 fur babies, and I have had a very lazy weekend. Only did a little clean up around the 5er and did some cooking. Otherwise watched the Olympics, pro football and Nascar. Oh, and did I forget to mention we all napped??

Yesterday was rainy and dreary all day. We had planned to go to one of the malls for a while and out to lunch but changed our minds with the weather like it was. Glad we did. We both got some needed rest.

No more calls this week so still patiently waiting. Have to go to Clinic for some blood work early tomorrow morning and then to hospital so that they can check out my feeding tube to make sure it is okay. So there will be no fitness center tomorrow but I will be back there on Tuesday!

Wish I had some more interesting news to share with everyone but it has been a pretty dull week after our dry run on Monday night!

Stay safe out there and stay tuned!!

We now have proof!!

If there was ever any doubt, we now know that I am really on the transplant list at Duke!! We had our first dry run last night.

Got a call at 4:36PM yesterday afternoon and were told to report to the hospital as soon as possible. Lungs may be available!! Arrived at the hospital before 5:30 and got checked in to the short stay area. Had to put on one of those awful hospital gowns and then had all of the necessary blood work, chest Xray and vitals done. Then the wait began.

At 2:30AM this morning we got a call from the coordinators and we found out that when they arrived to actually harvest the lungs they decided they were not acceptable. Duke will only take the best and I like that!! So we were mustered out and allowed to go home.

This was very scary for me but at least now I know what to expect and how the process works.

Keep praying for us that we will get some great lungs soon!!

Another Hot Week

Well, it has been another hot week here in Durham / Chapel Hill, NC!! In the high 90’s every day and no rain so it is very dry! I hate to say it but I am so ready for some cool weather!

We have not gotten a call about lungs yet but we are keeping our phones charged!! Went to the fitness center 4 days this week and did good on all but one day that I was not feeling well. Will be going 4 days this coming week also. Have a doctor visit for a checkup and labs on Thursday so will miss that day.

Charley and I went out to dinner last night, and although I usually don’t say too much about our meals out, I have to brag on this one. The name is Firebirds and it is in South Point Mall in Durham. We had a great steak there with all the trimmings and wonderful service. They had a lime cilantro vinaigrette salad dressing that was delicious!! And one funny thing happened. We saved a little bit of steak to take home to the fur babies. Our server took it back to the kitchen to box it up. He came back a few minutes later and was so apologetic. Seems there had been a mix up and our steak had gotten thrown out. So they were cooking us a new steak to take home. We told him that was okay but he insisted. Well, we paid our bill and waited for only a few minutes and here it came. They sent us home with a very nice steak and a loaded baked potato too!! And we had only saved a small piece of steak for our babies. So guess what I had for lunch today??

Hope everyone out there in blog land is doing great and staying cool!!

Another Week

Well, another week has passed and we are still on the list but have not gotten a call. I know, I know, be patient…. and I really am trying to be….. but it is so hard after we have been here so long already.

But I will be patient and wait until they have a good match for me and I am the next in line. I would not want to take lungs from someone who needs them more than I do. There are some folks here who have a much more severe problem than I do.

On another note, we have gotten some much needed rain this week as I hope others have as well. One side affect of one of our rains (a bad storm actually) was a power outage Tuesday that seemed as if it may last a while. Needless to say we got concerned because of my oxygen concentrator. So we went to a hotel for the night just to be safe. Had to find one that was pet friendly but that didn’t take long. There was one right down the road in Chapel Hill that was pretty nice. The fur babies did not know how to act but they were very good. Others in the hotel bragged on how well behaved they were.

I had a very good week at the fitness center. Showing quite a bit of. improvement finally!! And my weight is holding its own at 112.

That is it for this week.Hope everyone has a good weekend!!

Weekly Update

Well, we have not gotten a call yet to go to the hospital. Our coordinator told us that I have one weird antibody that may cause it to take a little longer than usual to get a match for me. I am okay with that as long as I get a match!! But I am ready to go!!

Everyone and I do mean everyone, has been so supportive. It is so hard to put into words how much I appreciate all the kindness and caring that everyone has shown and continues to show. And I know all the prayers will help me get through all of this successfully!!

Hope everyone has had and will continue to have a great weekend! Enjoy and get all rested up for another fun filled week!!

Hurray!! Good News!!

I promised a mid-week blog update if anything changed and it has!!

I am on the list for a double lung transplant – finally – at last!!

No idea how long this part might take. I have an antibody issue that may cause it to take a little longer to find a match, but at least now they are looking out for me.

We promise to keep everyone posted as things change but at the very least I will continue a weekly update for now. Bless you all for the prayers and encouragement and KEEP IT COMING!! I still have to continue working out and keep the weight at 105 or more. So my work is not done….

Again, thank you all!!

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!!

Another Weekly Update

It has been a long week for us both. I tried to get back to the fitness center on Monday and Tuesday and did not have much luck at all. Starting feeling bad again on Wednesday and have not yet been back.

Feeling better today than I have felt in over two weeks. Did some exercises with my hand weights along with some leg stretches today and also walked around a bit inside the camper to start trying to get ready to get back at it again on Tuesday (center closed tomorrow).

Planning to exercise more at home tomorrow and hope that I can accomplish more Tuesday than I have in over a month!!

I last weighed 99.2 pounds so my weight should be where it needs to be for the doctors within the next week or two. Than I hope to get listed and start waiting on lungs. Have to get my stamina back also, to be fully prepared for the surgery.

Charley is being his usual helpful, loving self. I honestly do not know where I would be without him. He takes such good care of me (inside joke between us)!!

One of very good friends from my high school days is currently in Hawaii (Honolulu) with his daughter who is soon having her second child. We have been in touch during the last couple of weeks and guess what I got in the mail this week. A Hawaiian Host gift package with chocolate coated, onion/garlic seasoned and honey glazed macadamia nuts. I have only tried the chocolate ones so far and they are delicious! What a special treat. And right when I need the calories too!!

I hope everyone is having a wonderful Memorial Day weekend and that you will be remembering all of the fallen military who have made our liberty and freedom possible!

Safe travels to you all!!

5/19 Update

I am so sorry that I have been so out of touch this week! Got up Monday morning not feeling well at all. Went in to see the doctor and get some tests done and found that I had pneumonia. Fortunately they did not hospitalize me, just prescribed the necessary antibiotics and sent me home. So I have been working on trying to get better from this, not lose any more weight than I had to (considering that I had no appetite), and get prepared to get back to the fitness center. Needless to say this is moving much slower than I would like!!

Based on the results of my weighing this morning it appears that we may have made the necessary adjustments with my feeding tube to help get the weight on that Duke is requiring. I hope this continues and that we can get listed in the next few weeks.

Charley has had his hands full with me once again this week. Since he has been having to wait on me almost constantly he is worn out so we are planning to just chill out here at the campground once again this weekend.

Also planning to try to catch up with everyone’s blog updates so that I can see what you all have been up to this week. Hopefully I will have some positive news to pass along with my next update and that would be a nice change, wouldn’t it?

Stay tuned and thanks for stopping by!! Safe travels to all who are the road right now also!!

Weekly Update

Hello everyone. We are still here in Chapel Hill, NC. We have had a very uneventful week. Aside from resting up and trying to get my strength back after being in the hospital we have had a couple of doctor/nutritionist visits and one trip to the fitness center that was not very successful.

Still working with the feeding tube. The nutritionist Increased the daily amount by 10ml with hopes that this will help since I have not had any adverse reactions to the tube. Not seeing any significant changes in my weight yet but hope to soon.

I will be returning to the fitness center Monday and will be going 5 days week again until we see a need to drop back for any reason. The only thing that will interfere with this will be illness or doctor appointments. It is going to be slow getting back to where I was before my hospitalization but I will get there. I have to!!

We hope that all you Moms out there have a wonderful Mother’s Day tomorrow and that you get to see or at least talk to your kids and grands!!

Safe travels to all and thanks for stopping by!!

Time for Another Update

It has been a very quiet week for us. Except for a few errands that Charley took care of and one visit with the nutritionist at the Duke Clinic, we stayed here at the 5er all week.

Most of the soreness is now gone around the surgical site for my feeding tube but I have a muscle pull that I am fighting with getting healed that came from trying to keep my coughing and stuff from hurting. You know, sometimes you just cannot win at this stuff!!

I was out of it for over a day late this week with another migraine!! I think maybe the stress of all this medical stuff is beginning to get to me. This one also made me nauseous like the last one. Oh well. I will ask the doctor this week when I go in to write me a prescription for the Imitrex that they gave me in the hospital for this. It seemed to work well.

And Charley has to be getting tired of playing nursemaid again!! I do know he wants me to get back to where I was before this surgery as soon as I can. We will be getting back to the Fitness Center starting Monday and begin working back up to the level I was at previously. Don’t know how long this will take but we will get there!

The weight gain has not started yet really but the tube is keeping me from losing while I get my appetite back to normal. I am sure you have all been wondering if it is working. We will probably have a better idea after monitoring it this week.

Styed tuned and thank you for stopping by!!

Finally Back at Home!

Got home from the hospital yesterday about 4:00PM. What a day!! Told we were going to be going home early in the morning and then had to wait most of the day to get all the paperwork and arrangements taken care of. But that is normal I guess. All I know is that I was ready to come home!!

The week started out all wrong. We checked in at Duke Hospital on Monday afternoon around 5:00, as instructed. It took about an hour to get checked in and into a room. Mid morning Tuesday we were told that they would not be able to do the feeding tube surgical procedure until Wednesday. Well, that didn’t make me happy at all but then my body kicked in and decided to get a migraine. This one made me very nauseous so there was no way to do it that day. That night (Wednesday) they put in the nose tube and I don’t care what anyone says, I would rather give birth!! The only good thing about this was that they could use it to put in the barrium and I did not have to actually drink it. I was hoping to have my surgery early Thursday morning but it was 2:20PM before they took me in. I was back in the room at 3:45PM.

Not a long surgical procedure at all but….. now the healing begins and there is a lot of soreness at the site of the surgery. We learned how to do the feedings, had everything ready to go and finally got to leave the hospital about 3:00.

It was so good to get home and see my fur babies. They seemed happy to see me too! The supplier for my oxygen came last night at 9:15PM to get us set up and trained on how to use the pump, stand and bags for the feedings. I will be getting fed 12 hours each night and this will supplement my diet with an additional 900-1000 calories per day plus a lot of other vitamins and nutrients that I probably need,

Now my goal is to get all healed up so that I can get back to a more normal routine and do some things for myself again. Not sure when I will get back to the fitness center yet but hope it will not be too long.

Stay tuned and thanks for stopping by!!

Off to the hospital!!

Well, I will be checking in at Duke Hospital this afternoon. Will be getting a feeding tube inserted so that I can finish gaining the weight the doctors want me to gain before they will list me for a transplant.

Needless to say, I am not looking forward to this but I am sure it will go fine. Just want to get in there, get it done, and get back home with Charley and my fur babies as soon as possible!!

Stay tuned and I will report in when I get home!!

Quick Update

Just found out that my feeding tube surgery has been postponed until next week. Something related to insurance….. who knows…..

Will post more later this week.

Guilty!!

I feel so bad that I have neglected our blog the last two weeks!! It has been rather hectic for us. Lots of doctor visits, tests, and exercise along with a couple of days that found me not feeling too well.

Last week we received news from our coordinator at Duke that led us to believe that we were on the verge of being listed. That got us so excited!! BUT, it was not to be. She tells us that the transplant team changed their minds and decided that I had to continue to focus on gaining weight and that my goal is 105. I weighed 95 at my last doctor visit. So 10 pounds to go. To help me with this goal they are scheduling the procedure to insert a feeding tube so that I can supplement what I am doing even more. We are waiting on our coordinator to let us now when. We think I may have to be in the hospital overnight but not really sure.

We are continuing to enjoy our stay in Spring Hill Park. The folks here are very nice and helpful. One of the ladies who lives here permanently has agreed to help us out with our fur babies when I have to be away for any length of time and also when I get called for my transplant. She is so nice!

We were hoping to have some great news by now. I know that Duke is doing everything they can to make sure that my transplant will be a complete success so I am trying not to be too disappointed with the further delay!

Hope everyone out there in blog land is doing well!! Safe travels to you all!!

Spinning Wheels?

Well, sometimes it feels like we are spinning our wheels at Duke Medical, but I don’t think that is the case. They are just so thorough and keep testing, testing and re-testing. Guess it is normal to get a little anxious to find out when I might get listed for the transplant.

I have a test scheduled for this Monday, a barium swallow to check my diaphragm, and another pulmonary follow up on 4/11 with all the labs and breathing tests and everything. Outside of that I think everything has been done. So we are continuing to wait.

As far as our trip to see the kids last weekend, it was great. We had a wonderful time and got to spend the weekend with them all at our son’s house.  We had lots of fun, lots of good food and lots of hugs!

Those grandchildren of ours are growing so fast!! Wish we could slow that down a little because they are going to start outgrowing their grandparents as they get older!!

And Cheyenne and Sadie had a grand time too, visiting with the whole family including the 4 fur babies!!

Thanks for stopping by!

Our Update for This Week

Well, this has been a pretty busy week!! I had some appointments at the Duke Clinic. One was to start over on my Hepatitis B shots. The first series did not take. And this for a person who absolutely hates getting shots!! Oh well, we do what must be done…..

The other clinic visit was with an ear, throat and nose doctor to check my trachea. The pulmonary transplant doctors saw something on one of my tests from December and again in March. They could not determine what it was and wanted this doctor to check me out. So here we go again!! He numbed up my mouth an throat and here comes the tube down my nose again!! But it was worth it – everything looked good so nothing to worry about there.

Based on what we have learned this week I will not be held up from being listed due to my weight any further. Hurray!!!! And, according to our coordinator, if the trachea looked okay then everything was done. So that tells me I could get listed very soon, possibly right after their Tuesday meeting this coming week. Wouldn’t that be something? If we get listed we will not be able to leave the Durham/Chapel Hill area so we had to plan a trip to see the kids and grandkids!!

After the doctor visit yesterday we returned to our 5er and packed up our stuff and the fur babies and headed for SC. We got here around 4:45 and the hugs from our 2 oldest grandkids were wonderful!! And the youngest joined in when she got home!!  Stacey and Lee (daughter/son-in-law) are coming to our son’s house for the weekend also so it will be a family affair for sure.

If we get listed next week there will be a special blog update to announce it to you folks who have been so supportive through all this!! So stay tuned!!

More Road Blocks

Unfortunately, we have not had a good week. We both came down with colds, me first and then Charley. Tried a couple of times to go to the fitness center and work out but it just wasn’t meant to be. So we spent most of this week recuperating and going to the clinic so that they could check me over to make sure this was nothing more serious. And it wasn’t…..

They did put me on a zpac (antibiotic) and increased my prednisone, just to be sure to knock out any infection that might be present.

I did have to have a follow up CT Scan this week also. I wish all of the tests were as easy as this one!!

We have not yet heard what my weight gain goal is to be but I do know they are working on it. Got emails with some questions about the history of my weight so that they could take that into consideration. Hopefully I will get this information from them soon. It will help to know what to shoot for!!

Thanks for stopping by!! Have a great week.

This Week in Chapel Hill

It has been another sort of wet week here in Chapel Hill. Not a lot of rain but several overcast days and lots of high humidity.

And we noticed yesterday that there are lots of trees and flowers blooming now. Hope that we will not see any hard freezes so that they can finish their cycle unharmed!! Unfortunately, that means that the Spring pollen season has started. Not good news for folks like me with breathing problems. Heat with high humidity and pollen are the worst things I have to cope with.

We had clinic visits two days this week so my rehab/exercise schedule has suffered. Had to get several tests done including one new one that had not been done before and several follow up tests (labs, breathing test, blood gases, that sort of thing). We also met with another of the pulmonary transplant doctors and two of the transplant surgeons. Dr. Hartwig looks so young but I imagine he must be older than he looks. Dr. Reddy looked more of the age you sort of expect, but he is not that old either. But maybe being young is a good thing for this? Liked both of the surgeons. Managed to get explanations for several things Charley and I had questions about.

Did find out that my weight is the one thing standing in my way of getting listed for a transplant. I now weigh 92/93 which is 10 pounds more than when I started my rehab in early January. According to Dr. Reddy my ideal weight would be 125. BUT we don’t think they are going to expect me to gain that much. As a matter of fact they have promised to provide me with a target weight to shoot for between now and my next series of follow up clinic visits. We should get this information by the end of next week, after their committee meets on Tuesday.

Some great news, one of the ladies I was in rehab with during January and February got listed about two weeks ago and she has already had her surgery to get her new lungs and is already coming back to exercise!! She looks great and seems to be doing very well. I love these success stories! It sort of settles my fear about going through such major surgery and the recovery process.

Charley and I have been talking about how to handle our fur babies when the time comes for my surgery. We will be away for whatever length of time I am hospitalized and that is an unknown. It varies with each patient. We are thinking about finding a good facility where we can board them, rather than asking our kids to come and get them and take them back to SC. The fur babies, especially Cheyenne, would be much happier with this plan since she is so attached to us. Sadie would probably go with the flow on whatever we decide to do.

If anyone out there in blog land has ever used a pet facility in the Durham/Chapel Hill area that you were happy with, or had bad experiences with any of them, please let us know. We want to make sure that our fur babies will be well taken care of while we are away. And yes, we know we have plenty of time to address this but it never hurts to plan early. This way maybe we can try them out ahead of time.

Well, that is our update for this week. Almost wrote a novel today, huh?

Thanks for stopping by!!

First days of March

Aside from being a little soggy, all is well in Chapel Hill, NC. It has been a rainy, humid week here which does not agree with me and my breathing!! We had a couple of nice, warm days in the middle of the week but the rest have been wet, and they have all been humid!!

We did well at rehab except for one day early in the week. I had to stop short of completing exercise that day due to the humidity. But all in all a good week. We did take yesterday off due to the humidity and me being sort of tired and worn out.

With the schedule for my rehab workouts it is difficult to plan to do much else, other than preparing meals or going out to eat. So our life right now is not very exciting to read about!! We do thank all you blogger friends for keeping up with us and sending your encouraging comments. It truly helps to know that you have all kinds of support out there!!

Safe travels to you all!!

Quick Update for the Week

Not much to report on for this week. I completed 4 more days of rehab at the Duke Fitness Center. Missed Friday due to not feeling well but all better now.

Saturday morning Charley apparently stepped wrong and has thrown his back out. Needless to say we have been taking it very easy to try and give it a chance to improve/heal. And it seems to be getting better but we are not there yet.

We will be getting back to rehab today and hope to have a great week with goals of continuing to improve my statistics.

Wanted to share a new picture of our children, grandchildren and grand fur babies. So proud of all of them!!

Hope you all have a great week. Thanks for stopping by!

Our Weekly Update

Our update for this past week is a little late! We did not get home until yesterday and we were so tired that we did not do anything!!

We were back  in SC for Charley’s Dad’s 95th birthday celebration on Saturday and we also spent some time with my Mom. Charley’s brother and his wife put together a very nice celebration and a lot of people in the family contributed food, pictures and help to make it a huge success. Most of the credit goes to Charley’s brother, Bob, and wife, Betty. Great job!! There must have been at least 250 folks there, a combination of family and friends (and Charley’s Dad has a lot of friends).

He joined the Walhalla fire department in 1944 as a volunteer and was hired as the  fire chief in 1961. He retired from this position in 1982. He did a lot of other things in his lifetime that I will not go into here. Suffice it to say that he led a very busy life up to and long after his retirement from the work world.

Last night we got about 1 1/2 inches of snow here in Chapel Hill. Durham only got about 1/2 inch. The fur babies were not impressed.

I took the day off from graduate rehab on Friday but I had a very good 4 days of exercise Monday through Thursday. Was back at it today even though I was still a little worn out from our weekend trip.

Hope you all have a good week. Thanks for stopping by.

I Have Graduated!!

I graduated from my 23 day pulmonary rehab program yesterday. Received a diploma and everything!! I must say I am very proud of myself because I never thought I would be able to do this and be totally successful.

Starting Monday I will begin the graduate program at Duke’s fitness center and will be doing this until at least March 7 or 8. Could be longer depending on what they tell us during my appointments on March 7.

Charley and I will be able to exercise together starting Monday for all but the floor exercise. That will still be an organized session. I will be on my own for the others (weights, bike and walking).

We are planning a nice, relaxing weekend. The hardest thing we are planning to do is cook.

We hope that you all have a wonderful weekend too. Thanks for stopping by!

20 Days Down - 3 to go

Completed 5 full days of rehab on Friday. Did very well on improving all of my statistics on walking, the bike and weights. The therapists all complimented me this week on my progress. Made me feel good (just like all those nice comments from you bloggers out there)!!

I think that I only have 3 more days to get through in order to complete my 23 day requirement. Then I will move on to a graduate program to see how much more I can improve. Charley and I should be able to work out together some during the graduate program.

We have been trying to get caught up on a few things this weekend that we have been slack about lately. Pretty successful so far in getting some of those behind us. Otherwise just relaxing ad resting up for another week of activity.

The weather today here in Chapel Hill is dreary, cold and rainy. So a nice day to stay inside anyway!!

Everybody stay safe out there!! Will update again in a few days.

Finished Another Week!!

Completed my rehab for this week yesterday. I only did 4 days this week due to not feeling well on Thursday and having to leave soon after I got started. But I got back on track yesterday. Everything continues to go well. I continue to improve every day!! Weights and biking limits continue to be raised by the therapists and for the first time since I started I was able to complete the 20 minute walk without any breaks to rest!!

We are planning a nice, quiet, two days this weekend. Completed the few chores we needed to do this morning and nothing else but cooking is planned.

BTW – the fur babies did get their bath last weekend and they smell so much sweeter!! A couple of pictures are enclosed. Notice in the second picture that they are about to slide off the back of the sofa!!

Hope you all have a great weekend and thanks for stopping by!!

Chewing Away!!

Snoozing Away

Another Week of Rehab

Just completed my rehab for this week. It was only 4 days since Monday was a holiday for the fitness center. Everything continues to go well. I am improving my capabilities every day it seems (or I am being pushed into it by the center and my hubby)…. sometimes I need a little push!!

We had a really good time at Stacey and Lee’s last weekend (our daughter and son-in-law). Jason and Duffie (son and daughter-in-law) and our three grandchildren, Jed, Morgan and Kaydee, all came to spend the day on Sunday along with Charley’s Dad who will be 95 next month!! We got all caught up on all the latest news from everyone. We also had some really good food prepared by our son-in-law.

We are planning a nice, relatively quiet, two days this weekend. It is supposed to be cold with the possibility of some rain. We are going to do some home cooking, starting with a pot of pinto beans for tomorrow night with all the trimmings that we like!! Good food for cold weather!! We also need to do some heavy cleaning in the 5er. Yes, we have not been paying attention like we should. Both fur babies will also be getting a bath and nail trim. They are little stinkers right now!!

Hope you all have a great weekend and thanks for stopping by!!

This Weekend

We have a three day weekend and will be going to my daughter's home in Chapin, SC for the weekend. Our son and grandkids will be joining us tomorrow. We will also get to see Charley's Dad. He is in Chapin at Charley's brother's for a visit and will be joining us tomorrow. Great family time in store!!

Will be back on Monday to get ready to start rehab again on Tuesday! Hope everyone has a great weekend!

Another Week has Flown By!!

Well, I just completed my second week (4 days) of pulmonary rehab. It is going very well in my humble opinion (doing better than I ever thought I would this soon). This is a long weekend due to Martin Luther King day on Monday and I can use the rest BUT…. I have to keep up the walking or it will be just like starting over on Tuesday! And I don’t want that!!

I have also increased my weight from 83 to 87 pounds so that is going well also. We met with one of the Duke nutritionists this week and got some additional help with the types of foods I should be focusing on and how often I should be eating and snacking. Maybe this will help the weight increase even more rapidly.

I must say that even though I still get very short of breath I am already feeling a lot better. I can also tell that my body is getting stronger. I am  hopeful that this improvement will continue.

And Charley joined the fitness center and he did his first workout today. He thinks he is going to be sore by tomorrow!! This will help him occupy the time he has to spend waiting on me to complete my rehab and lectures and it will help his health also!!

And, last but not least, thank you to all the folks who have sent such nice comments and notes of encouragement. You will never know how much we both appreciate this and how much it helps to motivate me to work hard!! Thank you so much!!!!

Rest for Two Days

Well, I finished my first three days of rehab on Friday and boy was I tired at the end of that day!! Needless to say, Charley and I have both been resting as much as possible yesterday and today even though we had to relocate our 5er yesterday. That did not take too long. We had to get into a more permanent site since we are here for a while.

I hope that I have rested enough t get me prepared for 5 straight days of rehab this week! And I hope that I continue to do well. The therapists at the fitness center keep telling me I am but I am not sure if that is just to motivate me or if they really mean it!!

By the way, I have not reported on Cheyenne and Sadie since we got here and that is my fault entirely!! They both love it here in this campground. They cannot stop begging to go outside for walks so that they can see all the squirrels and deer that are in the park. Especially the squirrels!!!

We just got a new camera recently that will allow us to exchange lenses and take better shots from long distances. It is a Canon just like our other two and we cannot wait to try it out.

Charley took me into Carrboro yesterday to find a new pair of shoes for my rehab. The ones I had were too heavy and were designed more for hiking than walking. The new ones should help me out at least a little. Charley also got a couple of pair of exercise shorts (since he left most of his summer wear in SC). He is waiting for a call from the fitness center about joining so that he can exercise too.

Will report around mid-week on how things are going!! Thanks for visiting!!

Duke’s Fitness Center

I love this place. These folks, all of those associated with Duke Medical Center, are just great people to work with and they really seem to care about all of the patients.

We met with the folks at the Fitness Center yesterday, went back through all the particulars for while I am there and what my options will be for after these 23 sessions. Yes, this round is 23 sessions and they started today. I could have started yesterday but decided to wait.

We had to do stretches, walk on the indoor track, ride the stationary bike and work on the weight machines. I also attended a lecture today and there will be others during the days that my 23 sessions occur. I managed to complete everything that they had planned for me and did it successfully!! I was so proud (and to be honest – very surprised!!).

I will be going to rehab daily until my 23 sessions are completed. They will start at 12:30 and end at 3:30. Lectures will also take place in the 11:30 – 12:30 or 3:30 – 4:30 slot. Charley will also be going to a few lectures that are scheduled for the caregivers during the same timeframes.

So everything has gotten off to a good start. I suspect I will be very sore in the coming days but I will work that out!! Wish me luck!!