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Barb's Links
Shands Statistics
Favorite COPD Links
www2.lungusa.org
www.copd-support.com - Barb's Pick
www.emphysema.org
Transplant Info
www.2ndwind.org - Barb's Pick
www.lunglifecenter.com
www.unos.org
Barb's Story
July 22, 2004
Having done three memorial celebrations in one week - in Florida, Wisconsin and Colorado - was a daunting task for Nathan & me. Over 100 people attended. Many shared wonderful stories about Barbara. Some were funny; some touching; and I'm sure she would have been embarrassed by the praise. But we weren't. Sweet is a word we've heard more times than I can count, as to how people felt about Barb.
The contributions to the Save the Children fund and other such charities have been tremendous. We appreciate the generosity of these gifts.
This will probably be our last update. We're happy we could put the Internet to good use! But it all still seems so surreal to us.
Barbara's ashes will remain in Colorado, but her spirit lives with us always.
Love,
Tom & Nathan.
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July 12, 2004
Barbara's memorial celebration yesterday was a wonderful event. It was an intimate gathering - a nice informal affair that Barb would have loved.
Don Sudbay, Jr. read aloud Nathan's poem to Barb. Don read it beautifully. It was a very emotional moment for all of us. Neither Nathan nor I could read it without breaking down.
My brother, Glenn opened & closed the ceremony for us & also read a love-letter to Barbara that I had written on the occasion of our first anniversary, over 36 years ago. It was wonderful listening to the stories on how everyone remembers Barbara and their interactions with her: Some humorous, some serious, some loving and all interesting. I think Nathan & I continue to learn how sweet people found Barbara to be. We've heard this many, many times from people that she did not even know very well. It's a wonderful tribute.
Still, to Nathan & me, this is such an unbelievably surreal time. This does not feel like the way it's supposed to be. But it is. And celebrating Barb is helping us through. We've got so many terrific memories! And so many great friends - thank you for sharing your experiences with us and allowing us to share with you. I'm sure we'll have plenty more in the next two memorial celebrations, Wednesday evening in Lake Mills, Wisconsin & Sunday afternoon in Colorado Springs.
[Please scroll down for times & places of the next two celebrations for Barb . . . .]
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July 10, 2004
Barbara's memorial celebrations begin tomorrow. Everyone who knew Barb is welcome to attend any of them. No ties, please - let's keep it nice but casual - just get together to share stories about Barb.
Tomorrow's memorial (Sunday, July 11th) will start at 2:00 pm at our home in Punta Gorda.
The second celebration will be Wednesday, July 14th, starting at 5:30 pm in Lake Mills, Wisconsin. The location is Joseph Megaans Restaurant, downtown (101 South Main Street)
The third will be held in Colorado Springs on Sunday, July 18th, at 1:00 pm, at the Memorial Gardens Cemetery & Mausoleum, which is located at 3825 Airport Road, phone: 719-590-7990. Map
Again, for all of these celebrations, we would like as many people as possible to share a story or thought about their relationship with Barbara (of course, you are not obligated).
Safe travels to everyone. We'll see you soon.
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July 7, 2004
The e-mails that many people have sent are good more than anything as a way of talking to us. Speaking on the phone is very difficult & we really prefer the e-mail. All of the messages are so appreciated by us and nice for us to be able to take the time to digest the warm wishes and nice thoughts of Barbara.
Nathan took thank you cards over to Shands yesterday and was able to talk to some of the staff of the CICU that Barb was in for 51 days. Some of the nursing staff wanted to know about her memorial celebrations & may visit on Sunday in Punta Gorda. He even caught up with Dr. Baz and had a good conversation with a couple members of the lung transplant team.
To clarify Barbara's memorial celebrations, the first one will be held Sunday, July 11th at 2:00 pm at our home in Punta Gorda. Again, this will be a low-key get together to share stories about Barb. Please call Brenda by this Friday at 941-637-0899 for details and directions.
The second celebration will be Wednesday, July 14th at around 6:00 pm in Lake Mills, Wisconsin. We'll update when we have all the details - Barbara's brother, Gary, is making the arrangements.
The third celebration will be held in Colorado Springs on Sunday, July 18th, at approximately 1:00 pm. Again, we'll update when we have all the details. Everyone who knew Barb is welcome.
And for all of these celebrations, we would like as many people as possible to share a story or thought about their relationship with Barbara (of course, you are not obligated).
One last thought . . . we'll be going back to Punta Gorda tomorrow afternoon, after we have retrieved Barb's remains. As Nathan said to me this morning, this whole thing seems surreal.
More later . . . .
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July 6, 2004
The shock is unbelievable for us, her family, her friends and business associates.
We've decided to hold 3 different memorial celebrations in honor of Barbara's life. These will be held Sunday, July 11th at our home in Punta Gorda. This will be a low-key get together for family and friends to share stories about Barb.
The second celebration will be Wednesday, July 14th in Lake Mills, Wisconsin. Barbara's brothers & sister and my brother & sisters live in the area - as well as nieces, nephews and friends.
The third and more public memorial will be held in Colorado Springs on Sunday, July 18th. Nathan & I have decided to keep all of these memorials fairly informal and dedicated to Barb' life; and not to dwell on the past two months.
People have asked about contributions and/or flowers. Barb was the one who came up with the idea of donating money in our clients' names this past Christmas to the Save the Children Fund (www.savethechildren.org). While we think this could again be a good idea in Barbara's name, we also offer this alternative: a local children's charity that you deem worthy & also make the contribution in Barb's name. We think this would make Barb very happy.
Nathan & I made arrangements this morning for Barbara's cremation - according to her wishes. We have also arranged for our travel over this period and have decided to stay close over the next few weeks. This we feel is in our best interests. But I cannot tell you how much we appreciate your support & good wishes. If you have any thoughts or questions, please feel free to e-mail us at: ayersads@aol.com. Or call Brenda in our Florida office, at 941-637-0899; or Amanda in our Colorado office, at 303-838-3516.
As specific times and places of the memorial celebrations are worked out, we will post updates.
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July 5, 2004
Day 51 has hit us with enormous sadness. Barbara died officially at 5:31 pm eastern time. Her kidneys & liver had failed completely. Her new lung was at less then 20% capacity, and her old lung had even less. On top of all this, her MRI of this past Friday showed even more water on the brain and bleeding, leading doctors to believe that there could be permanent brain damage.
Nathan & I came in for our 8:30 am visit knowing that we would see Dr. Baz in a pre-arranged meeting. Dr. Baz gave us all the information that we had since Friday anyway, but then he also showed us on the computer a comparison of the previous CT scan versus Friday's MRI. The signs to the doctors were quite obvious. And even we could see the difference. However, the immediate concerns were her kidneys & liver. Her output in the last 2 days was minimal - at best. The edema had pretty much taken over completely. She was so puffed up; you could not see the real person.
At 11:00 am, Dr. Baz started to discontinue the life support systems. The ventilator was left on at only 4 breaths per minute. Initially, Barbara made up the difference on her own to breathe normally. She was given doses of morphine every half hour, and her numbers slowly resided until she was no longer breathing at 5:15 pm. The residing fellow pronounced her at 5:31.
Throughout the last 6 ½ hours, Nathan & I did not leave Barbara. Nathan was on one side; I on the other - both of us holding her hands and telling her how much we loved her.
Sometimes we sat in silence in the room with no lights. Just a room with a little sunlight. Sometimes we shared stories of things we'd done with Barb, both fun & humorous. She would have liked it. The one thing that never gave out was Barb's heart. It stayed strong & true 'til the end. But we always loved that about her.
This is all we can write for now. We know you'll understand. We'll be in touch very soon.
Thank you for all the support and kindness. Tom & Nathan.
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July 4, 2004
Day 50. Barbara is still in a fair malaise. We see a bit more eye movement, but she is not very responsive, even to us. Her liver & kidney functions continue to decline. This is cause for great worry for the doctors & nurses also. The overall edema has overtaken her body to a great extent (because of the kidney & liver functions). This is another bad sign, and it needs to improve soon.
The lung is not the most important concern right now, due to the problems with the other organs. The long-term consideration, too, will be Barbara's brain function - which, with brain swelling and bleeding, there is very little predictability. Nathan & I just spoke with Dr. Baz and will be meeting him first thing Monday morning to review Barb's progress.
Until then, it's her fight; but as per Barb's wishes, no extraordinary life support systems will be used. The last thing she would want is to be kept alive with no hope of walking out of the hospital on her own. Which is pretty much how most of us feel. One thing I'd like to pass along about that, is that Barb's wishes are written down in her living will - something that everyone should consider making.
More later . . . .
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July 2, 2004
Day 48 (and counting) was not Barbara's best day. The morning started with an MRI of her lung & brain. The doctors felt that this would give them a much more accurate picture than the CT scan that was done a while back. While we knew first thing this morning that the MRI was completed, we had to wait for the doctors to analyze it.
Later in the morning, we had a call from Dr. Baz's assistant saying he would like to meet with us anytime we were available - which we chose to do right away, as we wanted to hear the results. We saw Barb at 8:45 am, and really did not notice any changes for better or worse, just status quo. She was still in a fair malaise.
During our meeting with Dr. Baz late morning, we received some unwanted news. First, the fact that Dr. Baz pointed out that her kidneys are failing & her liver function is impaired. We've had this news in the past, but it always seemed like there was a solution. Unfortunately as well, there is other news that is most unwelcome: the new lung is (basically) only approximately 20% functional. To compound this, the worst news showed that there is a recurrence of the brain swelling, at an even more pronounced level than previously (on the back portion of the brain, which affects vision). This self-corrects in most cases; and we're hopeful.
We had another meeting with Dr. Baz at Barbara's bedside around 5 this evening. She continues in a malaise & is relatively unresponsive to everyone, except Nathan & me. And even then, her expressions are very faint, although recognizable. Dr. Baz will continue to try some new things over the next few days, but the time between now & Tuesday is critical (we've heard this one before!). Both of us would have liked to have delivered a more upbeat report, but the roller coaster ride continues!
More later . . . .
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June 30, 2004
Day 46 and counting. Barb continues to make slow progress, at least it's progress! Today her Doctors had wanted to try a Trans Esophageal Echo or TEE (if it weren't so serious you could add a "HEE" to the end of that). This amazing machine allows the Doctors to go through the mouth, down the esophagus into the heart cavity. At that point they can do an external exam to check the condition, muscle tone and general overall well being of the exterior, plus more I'm sure. This is important with the stress on Barb's heart after such a long ICU stay.
They set up, they went in but were not able to get by the trach. The Doctors who wanted to look (not the same as those on the TEE) determined it wasn't worth the risk to force it. The information would have been nice, but not critical. The good news is, all her vitals show that her heart is in good shape and functioning well.
Dr. Baz continues to do his expert juggling of all her input (and yes, output too), it's all important. They may adjust some of this to give her more cognizance, Nathan and I would like that, but only if it works for Dr. Baz. Our hope is that Barb can still get out of ICU by the end of next week. Our fingers are crossed!
Business is well, busy. All in all we're okay.
More later...
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June 28, 2004
Sorry for not writing in a few days. There has been really nothing new to update. Had a good meeting with Dr. Baz this morning, however. He was really very encouraged following today's bronchoscopy: with her temperature being relatively normal for a full week now, he feels that Barb is winning the battle against the infections. The worst infection - the fungus infection - is still present, but Dr. Baz says that there is less & less blood in the lung every day. Barb will continue to take medication for around 6 months to fight this infection.
Dr. Baz was able to discontinue 2 other medications that were being given to fight infection. These meds were causing some difficulty for the kidneys & liver - they are functioning okay; but just not as efficiently as they could. Barb has been retaining fluids in her tissues because of the slowed kidney & liver function. With the 2 meds stopped, Dr. Baz is able to push for better nutrition, with increased protein delivery to help this condition. He says this week will be a big physical therapy week, and depending on Barb's progress, it's possible she could be transferred out of ICU next week. All-in-all, pretty encouraging!
Nathan arrived back in Gainesville late Saturday night, after being in Colorado for a few days & with clients for a couple more days. It's great to have him back here!
As we get more information, we'll keep you up-to-date.
More later . . . .
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June 22, 2004
39 days and still counting. Barb's temp is very good at about 36.5 Celsius, if she holds this she may make it through the infections. Dr. Baz feels she will need to maintain this number for 48 hours though, to achieve stability.
My visit this morning was good, with Dr. Baz, he gave me a decongestant (Zyrtec) to get rid of some allergies that I've picked up along the way. More rain this morning, heavy humidity, high temps, which don't work well for me.
I, unfortunately, waited for over 1 & 1/2 hours and did not get to visit with Barb this morning. They were putting in a new catheter and had other personal issues, which I'm sure Barbara would wish I not go into. You can only imagine what almost 40 days of being "bed-ridden" would do for your body.
I had a nice talk with Barb's brother, Francis, this morning, as I came back from Shands. It appears Fran & Donna have a couple of state bowling champions on their hands. I will be happy to report this to Barbara this afternoon. I shall also pass along many well wishes from family and our many friends, your thoughts are most kind and appreciated.
More later...
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June 21, 2004
Day 37 and counting. It actually seems longer than that. Sorry about the lack of updates over the past few days. I made the 480 mile dash to Punta Gorda and back, Friday & Saturday, then got Nathan on a plane back to Colorado, Sunday. He got in okay and will just spend 3 days there, then on to Virginia to visit with clients and head back to Gainesville Saturday the 26th.
Barb had an uneasy patch yesterday. Her breathing became labored when I was there. I was able to sooth her thoughts and Dr. Baz changed one of her meds to slow her down. By my evening visit she was back to a restful state. She was a little groggy this morning, but still cognizant.
In my meeting with the Doctor this morning he stated that her biopsy, of last Friday, showed no signs of rejection. But the blood clots in her new lung continue and the low level of infection also continues, both of these being of "concern". She was resting well today, and that's a good thing.
More later...
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June 17, 2004
It's our 37th wedding anniversary today. Not a lot of celebration going on, but we are happy for Barb's progress. She's not fully out of the sedation she was given yesterday, when they went ahead & performed a biopsy on the lung to check out its condition. We'll see what that report brings late this afternoon.
Nathan & I had a chance meeting with Dr. Baz last night in Barb's room. She was pretty out of it from the sedation, but Dr. Baz was very encouraged. In our conversation, we actually had fun talking about places in and around London that we are all familiar with - and of course, his favorite British football teams (Dr. Baz is a big Manchester United fan). It was one of our longer conversations with him, and we enjoyed it a great deal.
As we get more information, we'll keep you up-to-date.
More later . . . .
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June 16, 2004
While there was not much to report of the last couple of days, it was good news, because Barbara has stayed stable. She has even more facial expressions now and can do more than just 'yes' or 'no' answers - she can even mouth words! (Still cannot speak due to the trach.) She even has some humor back, which is remarkable considering what she's been through. Dr. Danny (the physical therapist) was in this morning & got a good chuckle out of her - something about wheelchair races in the hallway! . . . But not for long!
In our conference with Dr. Baz this morning, he felt that there still is some infection remaining in the lung, albeit a low level. However, it is still there. He may do another biopsy of the lung late this week (to determine rejection).
With what Barb has been through, Dr. Baz fully expects another 2 months in the hospital. And we know that after the hospital stay, there will be another 30 to 40 days of physical therapy. Her physical condition has become so weakened through this ordeal, so it's not surprising that she'll have to virtually rebuild her muscles from the ground up. She'll be right up there on the '$6 Million Man's' level before it's all over!
We're confident enough in Barb's stability at this point, that Nathan will take a couple days next week to fly to Colorado & come back down at the end of the week. I'll stay here but am planning some July travel, while Nathan will be here - trying to continue to get back to a 'normal' routine. While work always took precedence in the past, that's obviously changed for all of us.
More later . . . .
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June 14, 2004
30 days and Dr. Baz seems more encouraged now and that the worst is behind us. While lying there for a month, Barb's strength is greatly diminished - and she didn't exactly have heft to begin with (that would be my department!). However, Dr. Baz feels that with improved nutrition & rehab, she can regain the strength needed for her battle. 7 to 10 days still in ICU is not only a strong possibility, it may even be a little longer than that. She continues to respond well, albeit in slow steps.
Barb's medications have continued basically without change. And she is still doing fine without sedation, which means that her mind is able to come more to life. Nathan & I have had an almost 'normal' workday Monday - it's good to try to create a normal routine.
If anyone's tried to reach us on our cell phones, we've had lots of thunderstorms & lightning since last night; so we've had some service interruptions (gotta love this modern technology!).
More later . . . .
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June 13, 2004
The good news today is Barb's mental & physical responsiveness. When we ask her questions, she can respond with a clear 'yes' or 'no' shake of the head. She can even wiggle her toes on command. While this does not sound like a lot, compared to where we were a week ago, it's quite incredible. Her cognitive ability is definitely coming back, even though Dr. Baz said Thursday that it would be at least 5 to 7 days.
Nathan & I were able to get on the golf course yesterday. Although the weather was too hot, we enjoyed it - Nathan especially, with one of his best rounds of the year on a course that's not especially easy. I did okay but fairly average.
There is not much to report as far as Barb's treatment and medications, as the doctors have not made many major adjustments in the past few days. Her vital signs have been very stable. She has not been under any sedation since Thursday & has indicated she is not experiencing pain, although she's not in the most comfortable situation at the moment.
We continue to be hopeful, because Barb expresses real happiness when we come in to see her - she even smiled at us a couple times (especially when we told her about our golf game!).
More later . . . .
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June 11, 2004
While most people are probably tuned in to Ronald Reagan's national funeral today, as we will be, life goes on, and that's a good thing. Barb's Mom was an Alzheimer's victim for over 11 years. Barb's Dad, Francis, died in Betty's early stages. Barb's Brother Gary and Sister Nancy cared for her in the early years, later she went to a nursing home in Lake Mills, Wisconsin, her adopted home town.
We know of the terrible effects on the person afflicted and, especially, on the family. Barb went to a seminar on how to deal with this disease. One of the things they teach is humor and how it helps the family (i.e. 'You know the best thing about Alzheimer's? ......You get to hide your own Easter Eggs!') So what the Reagan family has been through, the past 10 years, we can unfortunately relate to.
Nathan and I are grateful for Barb's tenacity throughout her recovery, now becoming long ordeal, as one full month in I.C.U. approaches tomorrow. She had a restful night, but is still not cognitive. The Doctors still say it is too early and we must wait another 4-5 days to see how she will be. We shall wait. More later . . . .
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June 10, 2004
While the news is slim today, that's a good sign. Barb's bronchoscopy went well this morning. Less fluids from the pneumonia were extracted from her new lung. Dr. Akindipe is filling in for Dr. Baz while he is away for a few days.
They are still saying 5-7 days before she should be partially alert. We do notice new movements with her body and she does respond to her name and also to us by looking towards us and blinking her eyes. The whole process is just so slow though, so I guess patience will have to rule the day.
That's all for the moment, more later...
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June 9, 2004
They say "No news is good news", and that's pretty much the case today. Nathan and I visited early this morning, as he needed to visit our Orlando client and make a trip to Punta Gorda to collect the mail and check on Harlie and the house. Barb had a restful night. We noticed some small body movements that she has not made for the past 3 1/2 weeks and that was a positive sign.
We are awaiting more test results from Dr. Baz, hopefully this afternoon. She has been pulled off 3 of the drugs we mentioned in yesterdays report. This has not effected her one way or the other, but as he mentioned, it could take 5 to 7 days before we see much change. We'll keep you posted as we get more info.
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June 8, 2004
The good news today is that Barbara has now gone for over 48 hours without the assistance of Tylenol & the fever has stayed down. This is over 5 days now without fever.
Dr. Baz, however, was concerned about her mental activity in the sedated state that she's in; so, he ordered a CT scan (CAT Scan) last night. We just had a conference with him about the results. He needs to consult with the radiologist, but there appears to be some swelling in the back portion of the brain. This is fairly common with one of the anti-rejection drugs that she's on, which he will begin reducing today, along with a reduction of the propofol, which is the sedative (paralytic). She should start to become more aware and cognitive within the next 5 to 7 days.
Also today, Dr. Baz was going to draw a culture from the lung to determine if there is any rejection factor at this point. We should have the biopsy results tomorrow.
We also ran into Dr. Danny at lunch today - the chief respiratory therapist. He said that they wouldn't have put this much effort into Barb if they didn't believe that she had a good chance. Encouraging words! But as he said, it's a very long road ahead, which we are well aware of, based on her recovery from a lung infection last year - over 3 months of recovery time then. As we get more news, we'll pass it on.
More later . . . .
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June 7, 2004
Good news again today, as Barb's temperature & vital signs continue to hold steady. We did not do an update yesterday, because Nathan & I went golfing for the first time in a month. Fortunately, Barb's numbers are much better than ours were on the course! But I'd prefer her numbers to be in the proper range; we'll work on ours later.
Dr. Baz is saying that maybe another 6 or 7 days in ICU, as long as her numbers hold steady. The bronchoscopy this morning looked real good - Dr. Baz was very pleased as the lung showed even more signs of beating the pneumonia.
We've had many people wanting to send flowers, which unfortunately, Barb cannot have. We are saving all of her cards & letters for her to open when she gets out of ICU, so that she'll have the pleasure of opening and reading them then.
If anything changes after our noon visit, we ll post another update today. More later . . .
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June 5, 2004
The good news continues today - 3 weeks after the call came. Barb's fever, while borderline high, is staying steady at about 37.3 Celsius (99.14F). But it hasn't risen very much for the past 84 hours; so that's good news.
In our meeting with Dr. Baz this morning, he gave us overall encouragement but feels that Barb will remain in ICU for approximately another 7 days. As he said, while progress is slow, it is forward progress. All other vitals look pretty good & Barb's blood pressure is close to normal, although slightly aided by dopamine. Dr. Baz also indicated that the various treatments for the infection would last for another month or so. He praised our patience, but under the circumstances it's the best choice. We have confidence in the quality of the medical care & really have to marvel at Barb's resilence throughout.
Long story short, it's going to be a prolonged recovery; but the picture is looking better right now. Barb's rehab will be more in terms of months, rather than weeks.
More later . . .
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June 4, 2004
Day 20 of our saga . . . . I can't imagine 20 days in the hospital, much less 20 in intensive care. Barb's had so many '4th Quarter Rallies', I think she's close to tying John Elway's record!
But some pretty good news this morning: Barb's fever has been broken for 60 hours now & Dr. Baz was fairly optimistic this morning. As he says, "the hardest part is probably over. Now the hard part begins." With a little luck, the fever will remain down and lasix treatment can be started in earnest tomorrow. This will drain the excess fluids from Barb's tissues, incurred because of the sepsis. This morning's bronchoscopy was better but still shows some signs of pneumonia (a little blood in the lung yet). The new lung appears to be resilient, however; and Dr. Baz is hopeful that it will function as intended, once the ventilator is removed. That's when she can take it out for a real test drive!
We didn't give an update yesterday because we were waiting for Barb's temperature to tell us something. There was really no news. Barb's brother, Gary & I took a quick drive to Punta Gorda (if 480 miles is brief!) and back, to collect mail, etc. While there, we met briefly with Auddie, our next-door neighbor, who has been caring for Harlie-kat and watching over the house. I cannot thank Auddie & Ron enough for all they've done. It's greatly appreciated.
If we can get Barb through a calm weekend, it looks like the sedation can really be lessened maybe Tuesday & some physical therapy and rehab can begin.
We'll update, as we know more . . . . Tom & Nathan
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June 2, 2004
Roller coaster ride continues . . . . Barb's temperature rose yesterday morning and shot up as high as 40 degrees Celsius (104F). The attending nurse said that it could have even been higher, but 40 is the reading limit on this particular machine. They believe it's accurate because it's actually core body temperature.
The temperature stayed high all day yesterday & in to the evening. Dr. Baz had started to treat it early in the morning with the cocktail of medications, along with a cooling blanket and ice packs. It finally broke at about 10 pm and continued downward through early this morning. She was at about 36.8 this morning at 9 (about 98.2F). The battle against sepsis continues, and we remain uncertain but hopeful.
We are into Day 18 of a journey that was supposed to be 10 to 14 days of total hospital stay. We had expected to be going through rehab by now & that Barb would be on the mend. Our patience is just going to endure a bit more time.
That's what we know at this point . . . .
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June 1, 2004
After 2 days of Barb's fever holding down, it rose up again yesterday afternoon and last night. The antibiotic that caused the kidneys to shut down has been restarted again - the kidneys are back functioning fine. Hopefully, in combination with the other 4 medications it will kick the infection again - this information in our meeting with Dr. Baz this morning. Also to bring her temperature down, they have a cooling blanket over her (i.e., 'personalized air-conditioning'), and the regular doses of Tylenol were restarted for the fever.
So again, we play the waiting game. Our fingers are crossed - our hopes still strong. Barb, although still sedated with Propofol (a general sedative & paralytic, which currently can only be prescribed to patients on a ventilator), is able to show expression and react to simple commands. It seems like she is responding to us. The hard part is knowing how much is her response & how much is involuntary. But we do feel that she is having positive reaction to us in some respect.
On the good news side this morning, Dr. Baz reported that the new long remains soft and flexible, as measured through the ventilator readings. This is as opposed to the lung becoming stiff and hardened, which would not be a good sign. In other words, the lung still has a good chance of functioning properly once Barb is removed from the ventilator. Overall, the doctor is still cautiously optimistic.
More later. . . .
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May 31, 2004 (Memorial Day)
Good news is Barb's vitals are holding. She has broken the fever now for 48 hours - that's the best news! The one drug that she was administered for a viral infection, acyclovir, seemed to be one of the keys and very effective in combination with the other anti-bacterial agents; although it is toxic. While given for less than 24 hours, it none-the-less has a very severe effect on the kidneys. Fortunately, they're steadily recovering. Now it seems to be a matter of slow recovery and keeping a close eye on all her vital functions.
While not completely out of the dark, Barb s improvement has been remarkable. We ll have more to say after meeting with Dr. Baz later today.
More later. . . .
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May 30, 2004
We waited a day to post an update, because of the uncertainties we faced with the new treatments. Friday morning, Barb was started on Septra to combat the sepsis, which was getting very serious. This was a last-ditch effort, as all signs were pointing to her body beginning to fail. It seemed like nothing could be done to reduce her fever. Our last visit Friday evening showed only a slight improvement. On Saturday morning, we received very bad news, as Dr. Baz reported to us that Barb's fever & vital signs had gotten worse - things began to look pretty dismal. At this point, even Dr. Baz seemed to be getting pessimistic and was preparing us for the worst. While both Nathan & I were not giving up hope, we understood the serious possibility we might be facing. Dr. Baz at that point wanted to try to bring the immune up to fight the infections and hopefully lower the fever.
Ordinarily, the immune system would be suppressed so as not to initiate any sort of rejection factor. However, we all knew that if Barb did not win the battle against the infections, rejection would be irrelevant. At this point, we talked to Barb's two brothers, Francis & Gary and her sister, Nancy. While they have continuously been in the loop, it was important to let them know the gravity of the situation. Because Barb had been in ICU for 14 days, hope was beginning to run a bit thin. Fran & Gary determined that they wanted to fly in Sunday.
Now, on our second visit with Barb on Saturday, she showed even more improvement. Her fever dropped to where she was in a normal range. While this could be attributed to the last combination of drugs and an attempt to adjust the immune system, whatever the cause - the combination seemed to put her in the right direction. We do not yet know if the lung will function, as Barb is still on the ventilator. Part of that latest combination of efforts was to slightly lower the sedation, enabling Barb to have a bit more consciousness and be more aware. We were careful not to allow our emotions to run too high after this latest bit of good news. It's been quite a roller-coaster ride & we wanted to see what the next few hours would bring.
Well, good news on our first visit of Saturday afternoon: Barb's latest vital signs were holding in a positive direction. But again, not wanting to get carried away with just a couple of good readings, we knew that Dr. Baz really wanted to see two full days without fever to show real success in fighting the infections. Our late afternoon visit still proved to be positive. Our evening visit, even more so. We hadn't gone 24 hours with this good news but were beginning to feel pretty good about the progress. And even with four visits a day, we still called the hospital regularly. At 11 o'clock Saturday night from her nurse who said that Barb actually closed her eyes while sleeping - a first in 14 days! Just before that, he even said that she took a voice command and followed the instructions. Her fever was still down without the help of a cooling blanket - it looked like she was beginning to start to win the battle on her own.
Here it is 7 am Sunday morning, and our call shortly after 6 this morning gave us more good news. Barb's vitals are holding steady & her temperature is right where Dr. Baz wants it. This makes almost 24 hours that it's been going in the right direction. We're hoping for a positive first visit this morning and hope Fran & Gary's trip down this morning will be met with optimism - and that they may even be able to communicate with their sister (something we didn't think possible 24 hours ago!)
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May 28, 2004
Having moved the vent to Barb's trachea sure makes her much more comfortable. On the good news side, the doctors identified a bacteria yesterday, and there are 2 medications that can treat it. One of the drugs ("drug of choice") is a sulfa-based drug. While Barb has an allergy to sulfa, it is felt that it's needed in order to wipe out the infection & the risk is justified. We agreed with the doctors, as the risk is far greater if Barb does not beat the infection. The big issue still is getting Barb's temperature back down. In general, it needs to come down below 100 degrees to know that she has beaten the pneumonia. It's been running closer to 101. We have been cautioned about all the various ICU infections that patients can acquire - so this is another concern, as Barb's immune system is especially fragile right now.
Dr. Baz is one of the top doctors for lung transplants in the U.S.; so we trust his ability to find a positive solution. However, he told us yesterday that the next 48 to 72 hours are especially critical. Barbara rests easy, but it's primarily because of the sedation. Her blood pressure is stable but artificially low. Her heart is strong - and that's a good thing, because she needs it right now. We still do not know whether the transplant is actually successful and will not know until the ventilator is removed. At that point, the lung will be free to breath on its own and we'll all know. Then, a very long recovery and rehab can begin. The nursing and ICU staff has been wonderful in their treatment and care for Barbara.
Yesterday, Nathan made a quick trip down to Punta Gorda & back to organize some office matters. I made over 35 calls to family, friends & clients. Sometimes that can get to be emotional, as many of you know. Last night, after leaving the hospital around 8:30, Nathan & I stopped for dinner and had a couple of big ol' steaks! And when we got back to the apartment, that helped get us a good night's sleep.
More later. . . .
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May 26, 2004
Apologies for the sparse updates . . . . We'll try to keep up better & make sure you know what we know. The problem is, there was very little information to pass along. While Barb is being cared for well, there has really been no change in her condition. The viruses are being treated with 4 different antibiotics. But the real problem was the pneumonia, which was causing the fever, and the fever was of greatest concern, because it indicated the pneumonia was not subsiding. The trouble with the viruses is that they are not easily identified and require usually a 72-hour culture. Even though Barb is being "bronched" (see "Broncoscopy" below) regularly, twice a day, the virus cultures take time to grow. That's why at this point, we're just playing a waiting game.
Dr. Baz assisted Dr. Alexander today in the tracheostomy to move the ventilator tube from Barb's mouth to her throat. This will free her to (hopefully) breath more relaxed & more quickly allow her to begin eating semi-real food. Barb continues to receive nutrition intravenously. The plan right now is to slowly bring her out of a sedated state to see how well she can tolerate the ventilator in its new position. More than likely, Barb will remain in ICU for another 7 to 10 days. The ventilator is providing 40% of her oxygen at this point. A positive factor is that the nitric oxide has been discontinued (the nitric acts as a bronco-dilator - as a side note, one of the nurses told me that a while back, someone stole 2 canisters of nitric oxide, thinking that it was nitrous oxide (laughing gas) - this could have been an entirely fatal theft for the burglar. Fortunately, authorities recovered them unused).
There's very little humor these days. That's why, even the above seems pretty funny . . . . The reason we have not passed along more news is that there has been little news. It's all been fairly routine (hah!). We hope to deliver more good news soon. We'll try to do better. It is hard for Nathan & I to keep up, but we're doing our best for Barb. We are thankful again that she is in the hands of one of the best medical teams in the world.
Thank you very much again for all the prayers, wishes, support & kindness. You have no idea how much it helps - thanks! Tom & Nathan.
More later. . . .
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May 20, 2004 - Late Afternoon Update
[Editor's Note: Nathan again fills in for Tom on this update.] Mom received nutrition this afternoon. She'll be on a continuous drip of about 40 calories per hour, consisting mainly of protein, fiber and a few carbs. That's roughly 1,000 calories/day, which is probably sufficient for a person weighing about 90 lbs. - that's about where Mom's at right now.
I observed as Dr. Baz performed the bronchoscopy this afternoon. There was much less blood and fluid buildup in the lung; but Dr. Baz thinks he'll continue suctioning the lung twice a day. It's a precaution at this point to keep the fluid out of the breathing tube. When it builds up too much, it bubbles up through the breathing tube & agitates Mom severely (as you can imagine). Mom's fever is holding steady at about 100.5; so the pneumonia's in check for now. Her heart & kidney functions are looking good.
May 20, 2004 - Mid-Afternoon Update
[Editor's Note: Nathan is filling in for Tom on this afternoon's update.] Dr. Baz just phoned with news. Pneumonia has set in, which is why Mom began running a fever last night. And it is also why there has been so much fluid in the lung. The good news is that when the lung was taken in the field, a bacterial culture was begun & it turns out the cause of the pneumonia is probably this bacteria (the bacteria was present prior to transplantation). They know exactly what the bacteria is and how to treat it.
They were just taking Mom in for feeding at 1 o'clock. It needs to be done with the help of an x-ray scope, in order to make sure the nutrition is getting exactly where it needs to be. The procedure can be done blindly, but this is a much safer way. Again, it's reassuring to know the quality of medicine at Shands is as good as it gets.
May 20, 2004
[Editor's Note: Nathan is filling in for Tom on this morning's update.] There's really not a lot to say this morning. Mom remains in stable condition, but there's basically no improvement to report. The doctors and nurses have a difficult job in trying to balance her vital signs & the various sedatives and pain medication. Mom began running a fever overnight; so they had to cool her down. She is just on dopamine this morning. They were able to stop the morphine. I've had a form of pulmonary edema myself in the form of mountain sickness. The pain is indescribable; but while I got relief simply by descending to a lower elevation, this obviously is not Mom's predicament. The plan is to keep her very sedated until probably Saturday. The lung needs time to heel & regenerate the tissues as much as it can. The edema had worsened somewhat overnight and Dr. Baz (link) performed another bronchoscopy this morning. A PICC line will be installed today & Mom will be given some nutrition. She has not eaten since Saturday.
It seems like Dr. Baz is always at Mom's side when we visit. His dedication is amazing and gratifying. The dedication of all the medical staff is incredible - Dr. Akindipe and the entire team of doctors; the nurses - Sarah, Barbara, John, Austin, Danielle, Phuc, Jan and many more I know I am not mentioning. I certainly feel confident that Mom is getting the best possible care at Shands. But I've always known this, as the preparation and training we've undergone as a family in the transplant program has been completely thorough. We've all become part of a team and really, a family.
When Mom & I went to the 10th Anniversary Reunion of Shands' program last month, we felt that real sense of teamwork and family. The various life stories from the very first lung transplant recipient 10 years ago to my mother today are so truly emotional. Remarkable to me, also, is the gift of life - the fact that today there are so many lives helped by the ultimate generosity of other people. It's not just the several hundred people who've had successful transplants - just think about the exponential value of how many lives have been touched by this success. We've all heard the words so often, but seeing and feeling the results in my heart is so entirely real right now. It's remarkable to think that in any other time in human history, Mom would not be receiving this treatment. I've double-checked my own driver's license to make sure I've signed the donor consent. Many people have different thoughts and concerns about being a donor. But if you have not consented, I would highly encourage you to rethink the matter. I know that if I'm gone, I'm not going to need my body parts!
On a more mundane matter, Dad & I are settled in the apartment, trying to create some sense on normalcy. We got a 3-bedroom place a short drive from the hospital. The extra bedroom will make it easy for family and friends to visit, when Mom gets out and begins the rehab & therapy process. There's also a well-equipped weight room and workout facility here. I've been threatening to dis-interrupt my fitness routine, but I think my mind and body have been working hard in this time of stress - maybe tomorrow I'll hit the weights again. (I know I've got to stop saying it go do it. I did pick up a jug of whey protein, at least!) My Aunt & Uncle, Joyce and Glenn, drove up from Punta Gorda today to take Dad back and let him gather some things from home. This is part of the reason that I'm writing today's entry. We'll be setting up shop & trying to get some work matters taken care of - it's a little relief from our biggest worries right now. Mom would want us to, anyway. I've never seen anyone who works as hard as my mom, and I'm sure I never will. It's that strength that will help her through this fight. The trip to Punta Gorda will be good for Dad, too. While I'm just under a little stress, it's certainly much more than that for Dad. He and Mom have been together since high school, where they met. The very real possibility of losing a life partner - his only Love - is . . . . Well, it's just difficult for me to see Dad going through this.
I'm also forced right now to remember the troubles of our friends and colleagues right now. From our close friend whose son-in-law was just seriously wounded in Iraq, to another whose wife was just diagnosed with a brain tumor, we must have courage and Faith. And while I will not mention names in this forum, please know that our hearts and prayers go out to you in your own battles and troubles. We've all got to have Faith. (This is a very personal note, as anyone reading this knows that I never speak of God, primarily because I do not have the ability. But there it is. We all share our strength in some way or other. Enough said.)
I would like also to echo the thanks Dad gave earlier for all of your wishes and support. I will always do my best to share my own strength when called upon. More later. . . .
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May 18, 2004
Barb is fighting hard. It=s not easy. Her body is not adjusting as well as the Doctors would like. No rejection yet (rejection will not appear for 5 to 10 days after the operation), but pulmonary edema (the lung filling with blood & fluid) has set in twice. They say this is not uncommon. To one degree or another, it happens in all lung transplant cases. There is always damage in a transplant procedure - it's just the nature of the situation. In Barb's case, the adema is just slightly worse than about ½ the cases. They've done 2 bronchoscopys (tube inside the lung to vacuum the liquid out; this prevents pneumonia). While serious, it does what it's supposed to do. She continues to fight.
They have told Nathan and I to keep our visits short. While she is in a sort-of drug-induced coma, we could inadvertently trigger her senses to rally our support and cause her to struggle for what she wants, and not what she needs. This is difficult, because you always want to do what is best, and you ask yourself what that is: Her wishes, or the Doctors' knowledge and experience? It's not easy but necessary right now.
On another note, Nathan and I have arranged for an apartment here in Gainesville and hopefully will settle in for the next 2 months, if all goes well. That is our hope. That is our plan. We continue to move forward as best we can. And we understand what the rehab process will entail - something that the people of Shands have done very well is to prepare us, as well as preparing Barb for the procedure.
Thanks to everyone for your strength and support. You have no idea how much it helps.
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May 17, 2004
The call from Shands (University of Florida Transplant Center - Gainesville, at shands.org 'pull down menu' to 'Transplant') came at 7 pm Saturday to our Punta Gorda home. I answered and my heart started racing, the coordinator told us that Barb was a 'back-up', which they always do in most transplants. I got her to the phone. She was stunned; her voice became animated. She was clearly surprised and excited. At some point you think the call will never come, at least not in time, but au' contraire.
After waiting for more than 18 months, when she was first put on the list, you can imagine. The process, with all the testing, took over 2 years. It was an arduous wait, to say the least, but patience paid off and we were on our way to Gainesville. It took a grand total of 13 minutes to pack and go! That had to be a record, I'm sure. We took off in a blaze. Of course, my front seat 'back seat driver' constantly reminded me that there is a speed limit - which I tried to ignore - her and the speed limit signs. We made many calls along the way, the first to our son Nathan. He stayed with us on the phone and made arrangements to fly from Denver to Gainesville shortly at about 6 am Sunday morning. He has been wonderful, helpful and outstanding through this whole process. He is truly a Stand-up Guy!
Unfortunately we had to have one stop for gas. The trip is a little over 200 miles, with one stop we generally make it in 3 ½ hours - the exact amount of time in which they want you there. Barb had 4 'Angel Flights' she was line up for, from Fort Myers and Port Charlotte Airports. While these were available, we had just seen the local weather reports that said Tampa would be hit with showers. Tampa, by the way, is the 'Lightening Capital of the World', so we choose to drive rather than get on a 'puddle jumper', through a big rain shower.
About half way up we received a call from Shands, they said the first person did not match and that Barb was next. Well this was amazing news, because we thought we were just on a practice run, and that while it was just an 'exercise', we were more than willing to give it a shot, if nothing else, to see how we would react. We ended up doing everything right, as it turns out. Even with the stop, we set our best record of 3:15. Sometimes going as slow at 40-45 miles per hour, near Tampa, through a driving rain! We made it just before 10:30 pm Saturday night.
We're at Shands, they waste no time in the set up. There were 8 to 10 people hovering over Barb. From medical testing (YES, even more tests on top of more tests) to people getting legal releases, quoting patient rights, asking her question after question. I was standing nearby watching this, necessary stuff I'm sure, and surprised her blood pressure didn't go even higher that the 210/112 that it was. As they finished, after about 2 hours, it started to come down, 140/94 before she went into surgery. Who ever came up with the phrase: 'Sticks and stones will break my bones, but words will never hurt me'..... Bull! It's about 1 am Sunday morning, we still had 2 more hours to wait, which we did not know. The people working with us were wonderful. Finally its 'Go Time', 3 am Sunday May 16th and Barb is wheeled in for the biggest event, other than having Nathan, of her life. Now I really get to play the waiting game.
They said the first hour would be putting her under, then go to work. 'Routine' as they describe it, but how do you cut open a body, rip out a lung, put in another, and think 'routine'. I Can't. In the process I found out the lung was still in another body (was not told much more except the person was much younger) here in Florida, and would be extracted, at the last moment, flown here, analyzed, processed and readied for transplant.
The process went forward. Everything was going according to book, when they found a nodule on Barb's lung that had been removed. The Pathologist determined it way malignant, the consulting Pathologist said it was benign and we were still good to go. If there was cancer the operation would have stopped, she would have been sewed up and that would have been the very sad end to a precious life. We dodged a bullet. They went on, everything went according to plan. At 10 am Sunday morning the chief Surgeon came to me with good news. EVERYTHING WENT WELL!!!! I believe I was the happiest guy on the planet!!!!! Nathan got to Gainesville around 3 pm Sunday; we went directly to Shands. Barb was in what amounted to a drug-induced coma for obvious reasons. We finally left, went to our hotel, had a quiet dinner, and after 42 hours awake, finally got some sleep. More later......
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