I made myself a solemn promise that I would not leave Houston until I posted. So here it is- short & sweet, but it gives you a comprehensive overview of what God has done with me (God, doctors, therapists and my wonderful Caregiver friends)during this miraculous time. I promise further to add more detail as I come across it in my musings- I won't try for length but for facts and frequency- I have been chided from San Antonio to Paris!
I'm headed home tomorrow, Friday, January 21, 2011- I think Steve figured it has been 52 days since transplant, and I am fully ambulatory, no oxygen needed except room air since January 9, no coughing whatsoever, and as of the first month report which has come back, no sign of rejection whatsoever. I can shower, wash my hair, dress including sox & shoes, and the only thing missing are about 40 pounds, but I can afford to leave some of them behind. At 118, however, I look pretty sad, so I need to get some more nutrition as well as re-build muscle mass. Also, my posture is TERRIBLE: like the other old ladies who are 25 years older than I am. I call myself the turtle-bird, because my head looks just like a turtle poking his head out of his shell, and my completely scrawny body looks like the proverbial bird's. PT will, I hope, clear this up. The reason I got so stooped (I am now called scoliotic) is that for one full year, I wore oxygen around my neck, and several times a day, my cable would get stepped on by either Bo Peep, Steve, or me. Being pulled up short like that meant that I instinctively ducked my head as a defensive move, and pretty soon it just "grew that way" as my grandmother would say! Every day I keep meaning to bring my blog up to date, and every night I am still busy at 1:00 answering email, etc. and doing my assigned exercises. Preparing for my 4 medication sessions takes at least 30 minutes, and that is a big improvement from when I started when it was over an hour. I will have Home Health 5 days per week when I get home. That is good, because in addition to the meds, I have to test my blood sugar & vital signs 4 times per day. (I've never been diabetic, but the anti-rejection meds interact with the normal body metabolism in such a way that virtually everyone's blood sugar shoots up and insulin must then be given via self-injection on a sliding scale based on the latest reading.) I have several gadgets that I use daily in taking readings of pulmonary function. I will be getting my blood drawn locally in Beaumont next Tuesday and the results sent to Methodist Transplant. On February 1 I will be right back here, and I think I will see the team every 2 weeks for a month, then every 3 weeks, etc., slowly getting farther apart so long as there are no problems. There is still a rather large issue with my nutrition- I will reserve that for a later post as it is sort of complex. When I do get home tomorrow, it will be to all new floors and carpets- we invested a bundle in our new house in order to make it safe for me to recover in- the problems were an old A/C & Furnace and ratty old carpets where Bea's diabetic lab had peed everywhere. Under that, little did we know but should have guessed, was mildew. Under the linoleum (being replaced by hardwood-appearing laminate), the slab was wet- thanks to a bad sprinkler installation about 15 years ago. I was so thrilled to get a sprinkler system for the first time in my life- only to have it cost us more than it did originally to make right. Fortunately the man who installed it is an old friend of Steve's from Little League- Lone Star Irrigation his business- so he can give us a break if he will just admit his oversight. But for now it is fixed, and we also have a brand new filtration system, really heavy duty dude with 8" of insulation & filtration between outdoors and inside, a new Central A/C and central furnace. We got a nice tax credit for 2009 for buying the house when we did, and now we will get a credit this year for the purchase of the A/C, so that helps. Then the next project is new kitchen cabinets with the easy-to-reach pull-out trays, drawers, cans in the door, etc. Because all of this represents so much more to us than just getting a new house, we want to eventually ask Robert Besser, our Pastor, to have a House Blessing service, and I will send email or snail mail invitations. That's probably a year off- Steve has to get his new hip and I have to finish getting well first!!! If you have not read my post right after the surgery, please do- this is the culmination of what my good friend Patty has always called "A God Thing!"
Thursday, January 20, 2011
Saturday, January 1, 2011
Happy New Year!
NOTE: I WAS SO INTENT ON GETTING THIS PUBLISHED THAT I DID SO WITHOUT EDITING- WOW, DID I MAKE THE TYPOS! SO, IF YOU READ THIS BEFORE & THOUGHT "WHAT HAS HAPPENED TO EILEEN'S BRAIN?" JUST READ THE REVISION BELOW AND BE COMFORTED.
My son says that I need to post. He is right- it is now one month to the day since my miraculous surgery, and I am still in a state of gratitude (and I hope a state of Grace) over the event itself. Everyone might not realize this: for me to even have this opportunity is a rarity. Yes, transplants are more common. But there are so many who need what I received and most will not receive a match. So that is my prayer of thanks every single day.
On to the lesser-known facts about LTACs. Translation: rehab for "long term acute care." Sounds like an oxymoron, doesn't it? What it really is- a hospital dedicated to the needs of complex issues to do with recovery from complex procedures. I know, I have said this before. But it is a very difficult concept to realize in terms of feet-on-the-ground. During the regular businss week in the absence of a Holiday it is very well staffed and the people are skilled. There is also an excellent physician with deep pulmonary experience who is the physician in charge. He, however, has to interface with any number of doctors from all these other places like Methodist. This place gets people from all over. So several times there are real differences in opinions, hell, even in language! between what these docs have to agree on. My doctors at Methodist are supposed to be here daily. That was promised to us at the get-go. But everything was discussed in the scope of "regular time" whereas we had 2 vacation periods of 2 days followed by a 2-day weekend each time. That's 8 days out of 14 when things are not as usual and guess what? The good (smart)ones see it as an excellent time to just take a vacation because (duu-uuh) you get more consecutive days at a lower cost. Where does that leave the patient??? So- this is not a complaint. It is just the way it is. And I'm dealing with it. How did it translate into wrecking my NY Day? Steve & I went down stairs and sat during a ballgame- a change for me and a better seat for Steve. I fell asleep and they came after me- the posse- even though we told them where we would be. Thereafter it was downhill all the way. My tube feeding was set too high, so I built-up what can only be called an overabundance of crap in my gut and managed to sit on the bedsire commode for a couple of hours. Then I got nauseated- often a resu lt of intense cramps. The one thing the pulmonary doctors said was: DON'T VOMIT!!! I never had, not even in the whole last year- until today, when it came very very close. So trying to get phenergen, the remedy agreed upon & I heard my doctor verbally put it into orders-did not get recorded. I have to quit- I have hit the wall!
My son says that I need to post. He is right- it is now one month to the day since my miraculous surgery, and I am still in a state of gratitude (and I hope a state of Grace) over the event itself. Everyone might not realize this: for me to even have this opportunity is a rarity. Yes, transplants are more common. But there are so many who need what I received and most will not receive a match. So that is my prayer of thanks every single day.
On to the lesser-known facts about LTACs. Translation: rehab for "long term acute care." Sounds like an oxymoron, doesn't it? What it really is- a hospital dedicated to the needs of complex issues to do with recovery from complex procedures. I know, I have said this before. But it is a very difficult concept to realize in terms of feet-on-the-ground. During the regular businss week in the absence of a Holiday it is very well staffed and the people are skilled. There is also an excellent physician with deep pulmonary experience who is the physician in charge. He, however, has to interface with any number of doctors from all these other places like Methodist. This place gets people from all over. So several times there are real differences in opinions, hell, even in language! between what these docs have to agree on. My doctors at Methodist are supposed to be here daily. That was promised to us at the get-go. But everything was discussed in the scope of "regular time" whereas we had 2 vacation periods of 2 days followed by a 2-day weekend each time. That's 8 days out of 14 when things are not as usual and guess what? The good (smart)ones see it as an excellent time to just take a vacation because (duu-uuh) you get more consecutive days at a lower cost. Where does that leave the patient??? So- this is not a complaint. It is just the way it is. And I'm dealing with it. How did it translate into wrecking my NY Day? Steve & I went down stairs and sat during a ballgame- a change for me and a better seat for Steve. I fell asleep and they came after me- the posse- even though we told them where we would be. Thereafter it was downhill all the way. My tube feeding was set too high, so I built-up what can only be called an overabundance of crap in my gut and managed to sit on the bedsire commode for a couple of hours. Then I got nauseated- often a resu lt of intense cramps. The one thing the pulmonary doctors said was: DON'T VOMIT!!! I never had, not even in the whole last year- until today, when it came very very close. So trying to get phenergen, the remedy agreed upon & I heard my doctor verbally put it into orders-did not get recorded. I have to quit- I have hit the wall!
Sunday, December 19, 2010
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
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
Thursday, December 9, 2010
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.
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.
Saturday, December 4, 2010
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
xoxo shd
Thursday, December 2, 2010
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
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
Wednesday, December 1, 2010
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.
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.
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