Moving Right Along - With Bumps & Hitches

Today is December 19, but I had to look at the newspaper to remind myself. I'm sure all of you who have had to be hospitalized for a long time know how days & nights run together, and you never know what day it is. Oddly enough,I am only moderately affected by the fact that Christmas is upon us. I am so filled with such deep gratitude for this, the greatest gift that could have been given to me by another human being that it fuses in my mind with that of the Greatest Gift all of us were given by God's becoming incarnate in Jesus Christ which is what we celebrate in December. In the very early church, Christmas was not a celebration- Easter came first. And it is Easter that comes to us with its power to amaze, humble, and crush us with the knowledge of man's sin followed by the Greatest Gift that meant new life for all who would receive it. And then, in due time, we began to call attention to the actual Advent of the Word becoming flesh and the Christmas birth story. Most of all, I feel refreshingly separated from all the commercialism of Christmas. My own Christmas is going to be celebrated here, in Acuity Hospital, along with my husband and son, while all my other caregivers are home with their families. After that, I am scheduled to remain here until the 29th, at which time I feel like I will be ready to return to Beaumont and my continued recovery. And my doctors? They all wanted me to go home yesterday- I kid you not. When you look at the statistics on my chart, you see wonderfully normal numbers- the most amazing thing is that I no longer cough. If you have been around me lately, you know that I had gotten to the point where I could not begin to carry on a conversation without breaking into racking coughing, plus it invaded my nights and prevented either of us from sleeping. Despite these wonderful numbers, I have some very definite issues and problems that need to be solved, but because they are peripheral to the lung transplant, and not life-threatening, the Transplant Team doesn't think I need to be here in a hospital setting where they say that I have a bigger chance every day of contracting an infection, whether hospital borne or carried in by a visitor. There is a good argument to be made there- the last thing I need is an infection. However, the issue of my nutrition is one that I am not willing to just experiment with later on. So I will explain:

In the beginning, prior to the pulmonary fibrosis diagnosis, for about 3 years I was plagued with a cough following every single upper respiratory illness. I mentioned at the beginning about my two serious cases of double pneumonia. In reality, I've coughed after every cold forever at least for awhile. For the last year, my cough has been constant and the amount of phlegm I have ha to expectorate on a daily basis I would estimate at several tablespoons. Near to drowning, so says one of the doctors. Today, I rarely cough at all. Just now, tonight, I have had to cough a little more than usual, and it actually worried me, but my nurse said that I will continue to have the need to do that the clear my lungs and to "go for it".

I know this is unfinished and has typos, but I want to post it and will continue possibly tomorrow.

Eileen

Taking Back the Reins

Thank you Stratton, for great, accurate ghost-hosting of my little blog. I'm quite proud of it, overall. There was a lot left out, due to my laziness for the most most part. But it met my goal for it which was to put information out there in a supply-driven format that people could consume or not as they chose. This meant that I didn't have to try & figure out who is ultra-interested in all the clinical details, who just wants the facts,ma'am, and those who were mistakenly on my distribution list and are still scratching heads saying Trilby Eileen Who?

I will take a cue from Stratton and be brief. It is 6:30 am and I need to buckle this back up before the natives descend. But friends, I have never been a part of a bigger miracle in my life! I immediately give all major "credit" for this miracle to God first where it belongs- for His so faithfully negotiating the paths ahead of me that in many cases I didn't realize that I was about to miss a turn. Secondly I lay it in the hands of the most incredible Transplant Team in the world- to think that in the beginning Blue Cross thought Dallas would be better! In a later post, when I have made some real progress and have more endurance, I am going to try & get creative- maybe with the help of One Son- I will prepare a little presentation to go here on the blog that names my team members and how they work together, their skill level and my final assurance that I know I am in the right place because they have had so much experience. Things are ALWAYS going to reach out & grab you- the relatively inexperienced will panic and have a "do over". But chances are good that these guys and gals have seen it, chewed on it & solved it. But there is one final factor here, and that is my personal ability to make some records in terms of speed of recovery, etc. that just tickle me pink. For example- and this is what I call "going out when you are on top"- I'm not going anywhere, but I'm writing the last paragraph of this post.

Modestly, I list the following: I sort of kissed the ventilator as I passed by. I had seen people on them- my sweet mother-in-law will stay with me forever, I know. That is a sight I didn't want my children to see, so I didn't give them a chance. Most people are on the vent for about 24 hours, and then they have to be weaned. I went straight to the bottle which was room air plus O-2, but whereas I was on 10-15 liters of O-2 (it brought memories of Rita & Ike along with it, such was the gale!). I felt a bit crowded down in ICU (they have a full house as usual), so I just mosied on to a private room after about 4 days instead of 1-2 weeks. The standard plan to live here with caregivers for 30 days with daily outpatient labs, rehabilitation therapy, etc., has been changed for moving very soon to a brand new facility down towards Hermann Park called Acuity Vision (I THINK). I am still hog-tied by one remaining chest tube (out of 4) and my ever-present Foley to this bed, plus I hallucinated Sunday night under the affects of Atavan, prescribed (of course) by the experts who are allowed to make a mistake occasionally, and I fell. I think this is National Don't Fall Week or some-such, because the team ripped off my beautiful forest green slipper-sox and replaced them with ugly mustard-colored ones, plus they put a band on my wrist 3 times larger than my name band that says "FALL RISK !!!" And of course, they have an armed guard at the door looking in should I attempt to get out of bed without one of the staff present. OK- I really am going to wind this up, but the last point that is being made on these records is that I'm basically an old broad and am running circles around the 40-somethings and 50's. And I wish to publicly acknowledge Santy Runyon, Mr. Bean and Howard Hutchinson, plus many choral directors at places like Southwestern University and Laurel Heights UMC, because the fact that I was a flutist and a singer, in my opinion, just might have given me the last week I needed- because we were that close to the wire. Tuesday night I was thinking that it was hospice time because I could no longer do anything for myself.

Walking and Talking

Less than 60 hours after the transplant my Mom is in her own private room. I spoke with Steve via text message this morning. He said she is doing great and took her first walk down the hall today. I am about to head for Houston to visit for a couple of days. I imagine this will be my last post to the blog. Her plan was to resume posting once she was in a private room. So with that said I'll now take my leave. Thanks to everyone for the prayers, emails, text messages and positive energy. This has been an incredible experience.

xoxo shd

Transplant a Success!

This is Stratton posting for Eileen

In what would seem record time, the surgeons at Methodist Hospital in Houston, Texas completed a double lung transplant on my mom last night in 4.5 hours. They wheeled her into surgery at 11:30 pm and the surgeon was out at 4 am talking to Steve and my sister, Trilby. They got to see her at 5:45 am. She was on a ventilator but now is awake and breathing on her own. This is a modern miracle. I am still in Dallas wrapping up my work week. I will drive down to Houston tomorrow and spend the weekend there with her. Once again, please do not send any flowers as she can not have them in her room. She is in ICU but as soon as she is in a regular room I will post that information along with the mailing address for Methodist Hospital. A thousandfold thanks to everyone who prayed for her or the young man who made this possible. If you haven't registered as an organ donor then I implore you to do so. There are thousands of Americans who die every year from Idiopathic Pulmonary Fibrosis because there aren't enough organs donated to meet the demand. My mom was lucky. She has a long recovery ahead of her but I'm confident she will make it.

xoxo shd

Surgery Scheduled at 9 pm

This is Stratton posting for Eileen

I spoke with Steve via text message at 3:30 pm. The surgery has been scheduled for 9 pm tonight. It is going to be a long night. Apparently, the donor is a young male under the age of 20 in North Texas. He is clinically dead but on life support. He is being transported to Houston now. His lungs will be 'harvested' and 'grafted' into my Mom when her diseased lungs are removed. Please say a special prayer for this young man's soul. He and his family have given the ultimate gift to my Mom, a new lease on life. There is no way we can ever repay them for this very special gesture.

And We're Off!

This is Stratton posting for Eileen.

10:10 AM, Wednesday, December 1, 2010. My phone rang as I was getting ready for work. I knew before I even answered the phone. She said, 'I got the call! They have a set of lungs for me. An ambulance is on the way to pick me up and take me to Houston. I'll have my cell phone with me in the ambulance. I have to call Trilby.' I think I got the words, 'Oh my god and I love you' in before she hung up.

So there you have it. At 11:07 AM she texted me that she was in the ambulance watching Beaumont fade in the distance. It's now 1:26 PM and I imagine she is under anesthesia. When I get any more details from Steve I will post them here. The surgery is expected to take anywhere from 12-18 hours. Please DO NOT SEND FLOWERS. From this point forward she can not have any live or previously living plants in her surroundings. This is due to the potential for causing fungal infections. So save your money and just send a nice card. She loves snail mail! I will post the details of her room number, etc when I have it.

I am terrified and excited and nervous all at the same time. I can only imagine how she was feeling on the way to Methodist Hospital. Everyone says they are the best so I will just keep my fingers crossed and pray all day long. I know all of you will be doing the same. Thanks for reading!

xoxo shd

A Different Thanksgiving

As you can imagine, nothing about this Thanksgiving resembled any other Thanksgiving in our memory. We received several invitations to eat at other people's table, most notably Trilby's, but the task of moving me from one place to the next just means that I do not leave here unless I absolutely have to. Also, putting myself in Jacksonville, Texas on Thursday would not have been a good idea had there been a set of lungs available while I was there. I would have been twice as far from Houston, without any pre-arranged travel. I don't think I reported this- there is a lot that I think of from time to time that I left out of my posts- but we have arranged for a private ambulance company to come and pick me up as soon as I get called. Steve will follow in his car; Virginia will go in the ambulance with me, assuming this happens after she arrives. I actually have 2 companies that can and will take me to Houston- the one I prefer is small, however, and they have fewer vehicles. The owner called and talked to me- this is the kind of person I like doing business with- especially serious business to do with my life. He said he would appreciate it if I would call Acadien, which is the large private company with a branch here. They can virtually guarantee that they will have a vehicle available, so I have them on as stand-by. So, back to Thanksgiving dinner itself, Trilby understood why I couldn't come- but we have gone to her house every year now for several years, and she is a very good cook who seems to improve with time. I believe I could have taught Trilby how to be a good cook, but I can't take credit for having done it; she was never interested in learning how until she was out of the house, married, and learning how to live on a budget! But with the arrival of her children, she has learned how to put a hot meal on the table economically and with regularity, and I am proud of her for that.

So- we had just had a great visit from Stratton- he arrived the day I posted my last entry here, and he made a wonderful dinner. While Trilby cooks by the book, and has excellent results that are predicatable, Stratton cooks by inspiration and the seat of his pants, and most of the time, the results are excellent. Sometimes, of course, they are not- which is the risk one takes when one cooks by inspiration! Anyway, he stayed until Monday- Brian & Lucy spent most of the time in Pt. Arthur, but not until after dinner on Friday. I have told you about Lucy- she is all healed up from her altercation with the automobile, although the vet still has her wearing a brace. She is an exceedingly smart young dog- I believe it is an accepted fact that mixed breeds are normally brighter than purebreds- well, having owned a purebred Sheltie for 13 years and a purebred English Sheepdog for 15 years and counting, there is some truth to that statement. Our Sheltie was smart- he seemed to know instinctively what was wanted and was always eager to please. But as much as I adore BoPeep, I will be the first to agree that she is really pretty dumb. Sweet as you can imagine, and of course she wants to please us, but she has a hard time figuring out how, and as she has aged, she seems to have acquired a bit of doggie dementia. Suffice it to say that Lucy wins hands down in the smarts department! Bo lived with another dog for her whole life until about 3 years ago, when we had to have LeStat put down. But she is totally lost when it comes to interacting with another dog today. She is 3 times as large as Lucy, but she will stand back and watch Lucy eat for food. And she wants nothing more than to get away from her, so we separated them while we ate, and then Stratton & Brian washed the dishes and took Lucy & went to Pt. Arthur, but Bo kept looking around every corner as long as Stratton was here! As usual, Stratton found things that needed doing and did them, plus we had some time to just visit about this whole thing and how he is handling it. He can never sleep when he is here. He will get up and go out & drive around and buy donuts, or get a coke somewhere- he loves to browse in Walgreens- don't ask me why- but I would imagine he has gone into the 24-hour Walgreens in the middle of the night just to have something to do. This time he did not drive all night to get here, arriving as he did in the afternoon, and when they left, it was also in the afternoon. But he told me that he just never sleeps when he is here. I know that he can hear me cough- Steve has had to teach himself to sleep through it, and he can do it- amazingly- he just snores away. But with Stratton, I think it is the fact that when he is confronted with my severely limited life, and when he realizes that as much as we hope & plan for a successful match and transplant, that there is a very real possibility that I will not get better, and that my remaining life will be brief. That is hard for me to deal with, folks. And since I was 19 when my mother had her kidney transplant, and since she was literally at death's door when they did it, I remember having the same thoughts as Stratton is having now. That is something that I don't think he and Trilby have ever reallized- that I have been exactly where they are. The difference is the fact that my mother was not transplanted until she was so near death that it was not expected that she would recover- they felt like they could not do it earlier because they might be shortening her life. Well, her life at that time- for the whole year before she died- was so limited and she suffered so much, I always wished that they had done it 6 months earlier. In her case, they didn't have to wait for a donor- my grandmother was a perfect match and was right there ready & waiting. But they chose to wait until the last possible minute. None of the first 8 surgeries they did back then survived long enough to leave the hospital. The prognosis today is much better- so long as an organ is available. So I continue to remind myself that I am supposed to be thinking positively. I try to- I really do. I fight panic, and I need to work on a routine to stop a panic attack before it gets out of control. I have some reading material on yoga that is supposed to help- but I think I am not a very good student. So on with the dailies.

We made it through the work-week (meaning until Wednesday night), Steve learned that he had lost another pound when he went to his meeting, and then he went after BoPeep, who had spent the 3 days back at Barkwood. Thursday morning, Steve's cousin Becky Mason called. She had invited us to come to their house for dinner, but when she learned that we weren't leaving home, she brought the meal to us- some of everything. So we did not go turkey-less on this turkey day. To be truthful, I didn't eat but one bite of turkey. I just have trouble with meat- even chicken & fish. I don't know what it is, but since I have to take a prescription strength dose of Prilosec twice each day, I don't try to push it with something that doesn't want to go down right. After the transplant, I am going to have to have another piece of surgery called a fundoplication to keep the acid reflux from damaging my new lungs. I learned that is one of the reasons that I am not listed yet in Dallas- they want me to have the minor surgery first, but Houston says I am too sick to survive the first one and might never be able to have the transplant, so I'm sticking with them on this issue. (Also because I have never wanted to go anywhere other than Houston, and because they do 4 or 5 times as many lung transplants in a year as Dallas does.)

Thursday evening, right about dark-thirty, Kathy & Alex came & stayed with us until today, so I will close this for now & add another chapter soon about the Richardson girls and Bella. Hint: Bella is another small dog- Bo is having second thoughts on how thankful she is to live here. We, by the way, are very thankful for all that God has provided, and also for our many friends and loved ones, who continue to lift us up each day in prayer, and whose love supports us and enables us to keep from falling. We are so fortunate, and we thank you all.