Archive for the ‘Daddy’ Category

Jesus In Daddy’s Heart

Friday, May 14th, 2010

Daddy in his last hour in the Cardiac ICU - less than 48 hours after his heart transplant

Daddy continues to do well thus far since his heart transplant surgery Sunday night. It’s hard to believe his surgery was only 5 nights ago because he has made such tremendous progress! According to several doctors and nurses, he has set new records in recovery from such a procedure. A physical therapist has worked with him and he has successfully been able to get out of bed, which is difficult with a broken breastbone. He’s also walked the halls daily since Wednesday and has  climbed some steps. With his new strong and healthy heart,  he has quite a bit of muscle- building ahead. His muscles have atrophied quite a bit over the past few years as his heart has grown weaker. It is now time to slowly build back strength. He jokes that taking steroids is going to make him look like a body builder in no time. However, so far the steroids, while certainly helping his body accept the new heart, have only added fluid (not muscle)  bulk! In addition to beginning some gentle exercise, Daddy must also be diligent in drinking water so that his kidneys can heal. The poor blood flow of his sick heart damaged his kidneys but all the doctors are hopeful that now that he has a strong heart, any lost kidney function will be restored. In just four short days we’ve already seen improvement! We are so very thankful he is recovering so well thus far.

This week, Daddy’s days have been busy resting, visiting with friends and family and attending appointments with various specialists who are educating him on life post-transplant. Several medications he has been on for years are now history! However, several other new medications will be a part of his daily regimen for the rest of his life. While the biggest rejection risks are during the first few months, he must permanently stay on anti-rejection medications. Right now, he is very immune- suppressed which means he must diligently avoid germs. Once he’s released from the hospital, he’ll need to wear a face mask when he is in public. Food bars are prohibited. Because he’s coming back to my house and we have six children, we must keep things as sterile as possible. (Pray for our health, please!) Daddy is eager to learn how to take care of his new heart and implement exercise into his daily routine. Of course, right now, while recovering from surgery, he must rest. However, he looks forward to building back his strength.

This Monday, Daddy will have his first rejection test which is a biopsy that shows exactly how well his body is adjusting to the new heart. If all goes well, he will be released from the hospital. If his body shows any signs of rejection, he will stay as his medications are adjusted. Once he is back in Boone, he will have weekly appointments for a month. After a month, his biopsies will be every other week for two months. He will need to stay close to CMC (Carolina’s Medical Center) at least one more month and possibly up to three more months. Once he is out of the immediate rejection danger, he will be able to return to south Georgia. We are so very thankful that his recovery is underway!

One of Sarah’s friends asked her mom, “Will Mr. Scott have to ask Jesus into his new heart too?” I’ve reflected on this  innocent question asked by this sweet child. Before Daddy’s surgery, many prayers were lifted up that his donor would come to know Jesus if he didn’t already. For months we’ve prayed this. We know the donor didn’t die for Daddy. However, through his death, life has been extended. A gift has been given that can’t be bought.  So many times this week, as I’ve thought about the gift of Daddy’s new heart, I’ve thought about my Savior. He did die for me. He gave me life. He experienced pain. When I accepted the precious gift of salvation years ago, I received a heart transplant! How sad it would have been to have turned my new heart away. Sin leads to death. Jesus transforms us all. He changes our hearts. Then the Holy Spirit takes up residence inside us. We “exercise” our new hearts as we practice the fruits of the Holy Spirit living in us. The more we “exercise,” the stronger we become. Amazing! How I love the questions asked by a child – simple and yet so profound!

“Yes! Jesus does live in this heart too!”

Thank you, Lord, for Daddy’s new heart – his physical one. What a miracle! Thank you also for new spiritual hearts for all who accept your gift of salvation. When you reside in us, you change us indeed!


A New Heart

Monday, May 10th, 2010

Daddy has a new heart.

He is doing as well as can be expected. His breathing tube is out. He is sleepy but has talked with us coherently. One of the first things he asked us to do is pray for the donor’s family.We’ve been told the heart he received is beautiful – very, very healthy. Yesterday before surgery his blood that returned to his heart was 30% oxygenated. That is poor enough to warrant receiving a heart pump. Healthy peoples’ numbers read 60-80%. This morning he was at 70%. For someone who has been in heart failure for 13 years, this is just a miracle. The nurse told us last night that Daddy’s new heart is probably pumping stronger than some of ours! It seems surreal that he is not in heart failure anymore.

The surgery took a little less than 4 hours. We were able to see him at 2 am. All 9 of us here (my brother, sister and their spouses, mom, Dad’s sister an husband, Daniel and I) surrounded him as his wonderful nurse educated us about his tubes, numbers, etc. We were urged to get some rest because he was doing so well and had a personal nurse every moment. Around 4 am Monday, we got settled at the Holiday Inn Express, truly grateful, and able to rest, knowing Daddy was in good hands.

He’ll be in ICU for a few days. Right now everything looks really good. His blood pressure is a little low but we’ve been told that is to be expected. His color looks great. I told him he looked good and his response this morning was, “I always look good.” He is already back to his joking.

We are so thankful. Keep praying for him. Infection and rejection are the greatest concerns after surgery. We have no reason to be fearful but we do pray that he will recover speedily and completely. We are so thankful for all of you praying with us!

Today Is The Day!

Sunday, May 9th, 2010

Daddy is in surgery receiving a new heart right now. Please pray.

Update On Daddy

Friday, May 7th, 2010

Daddy is in the ICU at the Carolina Medical Center. While that sounds a little scary, it is mostly a precautionary measure. He needs to watched as his medications are adjusted.

Last weekend, he was maintaining fluid and his doctors changed his diuretic in hopes that his weight would come down. Over the course of several days, his weight not only increased but he began feeling more fatigued than normal so his doctor wanted him to be admitted to the hospital.

A catheterization was done on Thursday to determine his heart function. The test showed that he isn’t doing quite as well as he was in January when he was going through the transplant evaluations. His doctors expected his numbers to be up because the primecore medication he is on is suppose to increase the pumping efficiency of his heart. It was determined that his primecore needed to be increased. Because this medicine can cause a drop in blood pressure and can cause dangerous arrhythmias, he was put in ICU where he will be monitored closely.

Patients in ICU on the transplant list are a 1A status. Daddy has been a 1B. This means that as long as he is in ICU, his chances of receiving a heart are greater. He was told not to expect a type O heart while a 1B status. It’s possible that being a 1A could open up the possibility of not only a type A but also an O heart. It also means he may have a greater chance of receiving a heart from another geographical region than western NC. Dr. Frank mentioned to my sister that leaving Daddy in ICU over the weekend is a favorable  place for him to be. Of course the doctors have no control when a heart for him will be available. I am, however, “on alert” a little more than I have been while he is being monitored in ICU.

My sister is staying with my mom in Charlotte. Her in-laws are at her house in Georgia. My in-laws are here this weekend for a visit. Yes, this weekend would be very convenient time for the transplant with help in place for both Amy and me and my parents right where they need to be. However, I continue to pray for peace as we wait, all involved and the Lord’s perfect timing for this procedure.

I do not know what the plan for Dad will be after his medications are adjusted. Dr. Frank does not want to do a heart pump. He’d like to wait for a heart. However, Dr. Frank has told us that Daddy’s kidneys are stressed. His heart is weakening. The pump is still a possibility if his health declines as he waits. It’s possible Dad will come home early next week and continue to wait for that phone call. Of course, it’s also possible he’ll receive word that a heart has come available before he’s released.

Thank you all for your prayers!

Day 59

Thursday, April 29th, 2010

59 days ago Daddy was put on the waiting list for a heart transplant.

Daddy "Pop" and Esther

We aren’t complaining. The average wait time for a heart at the Carolina Medical Center is 63 days. The average wait time nationally is a year. From the beginning, we have trusted God completely with the timing of Daddy’s heart transplant and we still do. It can be easy to be impatient. However, the reality of waiting on a heart is that someone else, who is giving  life through the gift of their heart, will die. The organ donor isn’t dying for Daddy. This person desires to bless another and give life.  However, there is no way I can pray for a death to happen expediently. We have to trust the Lord and know his timing is perfect.

While we aren’t complaining, Daddy’s health isn’t getting better. His visit with the heart surgeon, Dr. Tomley, was a little discouraging today. He’s gained about 10 lbs of fluid so Dr. Tomley doubled Daddy’s diuretic to try to drain the fluid. His medications are not as effective as they once were. Daddy has an appointment in about three weeks and the doctor indicated that it’s likely he’ll discuss putting in a heart pump if a heart (for transplant) has not come available by then. The concern is that Daddy’s health is declining too much as he waits and a heart pump would hopefully serve as a “bridge” until one becomes available.

We have mixed feelings about the heart pump. If it’s what Daddy needs, we are all for it. However, as a “bridge to transplant, ” having the heart pump procedure means he will have two open heart surgeries. Daddy will need to be taken off the transplant list for a couple of months while he recovers from the first surgery. That’s a lot to endure and his total wait time for getting a heart will be longer. It is possible that while he recovers from the heart pump procedure, he’ll be able to return to Georgia. The doctor said that would depend on several factors and he was noncommittal about what Dad would/wouldn’t be able to do as he recovers. While we want the heart pump if it will truly help Daddy live comfortably and in optimal health, we’d rather him only have one major surgery, the heart transplant, if he can receive it in the next few weeks.

Again we are faced with the need to trust in the Lord’s sovereignty. Daddy wants the call that a heart is available for him soon. We all want that. Yet we also want was is best for him. We know God’s timing is perfect. We will keep waiting.

Thank you all for your prayers and encouragement. Even though Mom and Dad are surrounded by lots of activity in our busy household of 8, the days are a little long for them right now. It’s hard to be away from home waiting for a phone call. They miss their normal life, friends, church and Georgia family. We are so very thankful for all of you who pray for them and encourage them with facebook notes, calls, cards and even cookies 🙂 It really means so much to know that Mom and Dad (and all our family) are being lifted up during this time.

Please keep praying and I will keep you all posted after his next appointment or that long-awaited phone call… whatever comes first.

A Different Kind of Nesting

Wednesday, March 3rd, 2010

Dad got the call yesterday that he is officially on the transplant list. We are thrilled. The average wait time for a heart is 2 months at the Carolina Medical Center. However, we’ve been told that his could come much sooner than that because he is on the top of the list for his blood type. We could get the call in an hour or it could be awhile – even longer than the estimated 2 month period. So now I feel like I am 9 months pregnant and waiting for labor. Immediately, I may have to change plans and get to Charlotte. Immediately, someone else may have to step in and help with meals and childcare. Thankfully, with two teens and two tweens, this isn’t as hard as it once was. However, it still means I feel like I need to have food ready and the house in decent shape, school plans ready to go and I can’t be too far from home. We are so very thankful to be only a phone call away from the recovery side of all this waiting!

LISTED! (Pending Insurance, That Is…)

Tuesday, March 2nd, 2010

Today Daddy met with Dr. Thomlison because over the weekend he had some breathing problems and  fluid retention. We were greeted by Dr. Thomlison asking, “So, has anyone told you that we discussed your case this morning in our transplant team meeting?” We assured him we were aware that his case would be discussed but had not heard the plan. Much to our (and especially Daddy’s relief), Dr. Thomlison informed us that the team approved him to be listed. As long as his insurance covers the procedure (and we are sure it will), Daddy will be put on the heart transplant list. Usually, this takes about 3 days so we are hopeful that by the weekend, it will be official.

We feel the news we heard today is the best news we could have heard. At Daddy’s last appointment, the LVAD was discussed as a possible option for a bridge to transplant or even instead of one. We were thrilled to know of another option, but didn’t feel in the long run this was the best one for him because he would still be in heart failure. Also, the LVAD would be a little cumbersome because he’d have to always have the battery pack with him and would always be “connected” with a tube. The LVAD is wonderful for those who have a long wait for transplant or for those who are not good candidates. However, transplantation truly gives Daddy a new lease on life.

I inquired about the high calcium levels, low platelet situation, and parathyroid issue. All of those things were discussed in the meeting this morning but none of them are contraindication for transplant surgery. Daddy was told it is most important that his heart is taken care of. Then those other issues can be tackled. We are prayerful that he will be able to wait for his heart at my house and not in the hospital. That way he can continue to experience the benefits of around the clock entertainment and good meals. Daddy is not a fan of boredom or hospital food.

Being a type A+ blood and a 1B status puts Daddy in an excellent position. There are no others on the list with his blood type which means as soon as a heart in western NC becomes available that is a good fit for Dad, he will be notified to make his way to Charlotte for surgery. The average wait time for this facility is 2 months. However, Dr. Thomlison indicated that most likely for Dad, the wait would be shorter. However, there is, of course, no way of determining this.

We are so thankful for a good appointment today. We’ve put this whole situation in God’s hands and we trust Him. If we were told today that Daddy wasn’t a good heart transplant candidate, we’d still be thankful for the Lord’s guidance. We wouldn’t want him to go through this if it weren’t in his best interest. However, we all admit that “listed” is the word we wanted to hear today. For us a new heart means hope for a longer and better quality life. Daddy went to bed thinking of all the sermons in his head that he wants to write and deliver. He wants to exercise and get stronger. We all thank the Lord that hopefully very soon, he’ll be able to do those things and more.

Very Informative Video On Heartmate 2

Wednesday, February 24th, 2010

[youtube=http://www.youtube.com/watch?v=_3XJdfK7UVM]

More News and More Waiting…

Wednesday, February 24th, 2010

Daddy had an encouraging yet also sobering appointment today.  The PA Daddy met with presented another possibility outside of transplanting which would be a left ventricular assist system. This device might be a “bridge to transplant” for Dad or it might be beneficial enough to be a long term solution. Hearing that the LVAS could be an option was encouraging because if for some reason Daddy isn’t a good transplant candidate, this may help him to have better quality and longer life. While it is a more complicated surgery than a transplant, it doesn’t carry the rejection or other transplant risks.

The sobering news is that Daddy is really sick. Because his medication (Primecore) is relieving his symptoms, he feels better than he has in a while. He can climb stairs and isn’t as breathless as he was before his January evaluation.  Hearing phrases like “bridge to transplant” and “you may reach 1A status” is hard to hear. He also was informed that his platelets are low and his calcium is high. He’ll need surgery on his parathyroid either before getting a transplant or after. The endocrinologist doesn’t know in what order the cardiologist will want to go about taking care of this.

So now we are back to waiting. This time, however, we have been told that his case will be reviewed this coming Monday. We are very, very thankful for that! We will have waited 7 weeks for his case to be discussed on the heart transplant panel. Shannon, the PA, did tell Dad that while his case will be reviewed, it’s possible he’ll still need more tests (possibly on the platelets?). The team will devise a plan. We don’t know if that will mean parathyroid surgery before being listed, the possibility of LVAD surgery instead of transplanting, or being listed for transplant. We’ll just wait and see…

Waiting

Tuesday, February 23rd, 2010

Still waiting….

The heart transplant evaluation team meets every Monday. Daddy started his evaluations on Monday, Jan. 11th and every Monday since then, we’ve been hopeful to hear a decision as to whether he will be listed. As of today another Monday has passed. I’ll admit… I’m feeling a little impatient tonight.

Daddy has great perspective. Waiting on God’s timing is what we are doing. Thus, we have no need to be irritated that His timing wasn’t today.

Daddy has an appointment in Charlotte tomorrow afternoon. Even though we were told we’d be notified on the Monday he’s evaluated, I am hopeful that tomorrow we may have news after his appointment. We’ll see…

If we don’t know if he’s listed yet, at least we’ll know what the next step will be.

If we don’t have anything else that must be done (tests, appointments, etc), next Monday will be here in only 6 more days…

I’ve been told it’s a dangerous thing to pray for patience, but that is what I need right now.