I am having some work done on my website, which is going to change some things. If you are reading this via RSS, or you clicked through from a bookmark in your browser, please note that the new address for the blog is simply hughhollowell.org.
If you are getting emails containing the blog posts, you shouldn’t even see this post, as those changes were made automatically.
By early 2015, she was in heart failure, and her quality of life was plummeting, so her cardiologists at Duke University hospital in Durham put her on the heart transplant list.
One of the most frustrating parts of the process for me, as her primary caregiver, was all of the things I did not know, the things I didn’t know to expect. We don’t really keep diaries much as a people anymore, and I am sure we are the lesser for it. However, I was pretty active on Facebook during that time, so I have collected the Facebook posts and Instagram pictures from that time, and put them together in a narrative of sorts.
One day I intend to write a memoir of this time, but until then, I hope this can serve as a roadmap of one family’s experiences. I hope these can help others see they aren’t alone, and to remind us that we are loved, and that what saw us through this time was our community.
The story starts in May, when we were asked to go to Duke for a 3 day evaluation, to judge her suitability for transplant.
Wednesday, May 27, 2015 at 11:35am: “I’m kinda famous on the Internet. If we need to raise money for her to get the transplant, we can do it.” – What I just said to the financial counselor at Duke. I think I came across as far more confident than I actually am…
Wednesday, May 27, 2015 at 5:09pm: So, back home from day one of 3 days of medical evaluations that will determine whether Renee Hollowell is a candidate for transplant. Just these 3 days have a pre-insurance cost of $60,000. I think I need to lay down. And sell a kidney or something.
Thursday, May 28, 2015 at 8:48am: On our way back to Duke for day two of Renee Hollowell’s transplant evaluation. I am in a much better place, following 8 hours of sleep. We are thankful for all of you.
Thursday, May 28, 2015 at 9:31pm: Day two of transplant evaluation for Renee went well – a few tests tomorrow, and we are done. We should know at the end of next week if she is being listed. Thankful for all of the love and support.
Just so you know, today I mentioned the overwhelming support we have on social media when the social worker asked about our support network. #LoveYouGuys
Friday, May 29, 2015 at 8:32am: Thankful the 7:30 AM tests were cancelled. Gonna grab breakfast and head in to Durham slowly. Day 3 of Renee’s transplant evaluation.
Thursday, June 4, 2015 at 4:23pm: Renee is now officially on the heart transplant list.
Cleaning up the messes
[Before the transplant, they wanted her to deal with medical loose ends – she had some dental work done, and her gallbladder out – a simple, outpatient procedure, they assured us.]
Wednesday, June 10, 2015 at 10:37am: If you are keeping track of the craziness that is the Hollowell lives, we are at Duke today to get Renee’s gallbladder taken out. For obvious reasons, I will probably be hard to get in touch with today.
Wednesday, June 10, 2015 at 4:12pm: Renee update: She has been in recovery for almost 4 hours, and they can’t get her oxygen levels to where they need to be. So, they are putting her in intensive care for observation and keep trying to get more O2 in her. I talked to her, and her attitude is good. We just need her levels to be higher.
Thursday, June 11, 2015 at 9:25am: Renee had a good night, running a slight fever but otherwise good. She has a lot of pain this morning (not unexpected) and we will know more later this morning. I have ducked into the office to get a few things done while she rests. As I know more, I will post it.
Friday, June 12, 2015 at 1:00pm: Renee is ok – sitting up, carrying on conversations and so on. Still requiring oxygen, but less than yesterday, so that is good. Still in ICU, but they are planning on moving her to a regular room if all goes well today. Meanwhile, I am sitting here in the hospital, adulting by changing banks and swapping bill pay on like 20 accounts. Nothing like doing that while in your wife’s hospital room to realize just how precarious your financial situation really is.
Friday, June 12, 2015 at 8:23pm: The doctor just came by. Renee is still on oxygen but greatly reduced. She was moved to a regular room this afternoon, and is taking her first shower since Tuesday night. If you know Renee, you know how happy this makes her. If she has a good night, she will probably be taken off oxygen completely tomorrow, and if she tolerates that, be sent home.
Saturday, June 13, 2015 at 1:21pm: Renee is now off the oxygen, and only on “room air”. They are seeing how she tolerates it, and will be walking her around the hallways shortly. Assuming this works out, she could go home today. EDIT: After 30 minutes, we are back on the oxygen, albeit at a very low rate. #Dammit
Saturday, June 13, 2015 at 3:10pm: Just talked to the doctor. At least one more day in the hospital. Still on oxygen. I just can’t even.
Saturday, June 13, 2015 at 3:30pm: I bet I have eaten out more in the last week than I have this year. This is incredibly expensive.
It is also a mere foretaste of what life surrounding transplant is going to be like, and also I think, indicates I need to rob a bank or something. (I am also aware that I am being a bit whiny right now, and I thank you for putting up with it.)
[We went home Sunday.]
Monday, June 15, 2015 at 3:28pm: Shit is getting real. Basically, Renee is now much higher on the priority list for heart transplant.
[We got a call at 6:30am, telling us they had a heart for Renee. Oh shit! We scrambled like mad people, got to the hospital an hour away, was there like 2 hours and got sent home – there was something wrong with the potential donor’s heart.]
Tuesday, July 14, 2015 at 1:08pm: Spent the morning at Duke Hospital, thinking my wife was going to have a heart transplant. That didn’t pan out, so now I am back at work. #EmotionalWhiplash
We Get The Call
Tuesday, August 11, 2015 at 3:28pm: Dear friends, This morning we got a call from Duke Hospital in Durham, telling us to come in because they had a heart for Renee. I came home from work, and we ran around like crazy people, grabbing clothes and feeding the cats and rushing out the door. We have been here once before, and it didn’t work out, so we waited until we were pretty sure it was going to happen before we let anyone else know. We are now here at Duke, and if it all works out, surgery will happen late tonight and we will be here at least ten days or so, maybe longer.
Obviously, our lives are going to be hectic for the next 24 hours, while they give Renee a new heart and I pace the floor, trying to embrace my powerlessness (and failing). We are going to need lots of help over the coming weeks, and as we do, we have no problem asking for it.
Right now, though, we are focusing on the tasks in front of us and taking it a minute at a time. I won’t be super available by social media today, so don’t feel offended if I don’t respond – things are a bit nuts here. We appreciate your prayers and good thoughts today while Renee goes into surgery – we go into this knowing we are loved and blessed by our friends.
Please keep the family of the donor in your thoughts and prayers as well – we are very mindful of how much the gift of a heart for us cost them.
Peace and all good, Hugh & Renee
Tuesday, August 11, 2015 at 6:35pm: A quick update about Renee Hollowell: We are in pre-op, still waiting. It will more than likely be near midnight before the actual surgery starts. When it does, it is an 8- 10 hour surgery, assuming nothing goes wrong. In other words, don’t be shocked if you don’t hear anything from us until mid-morning or later.
Renee and I are reading your comments and notes and messages to each other, feeling very loved and supported. Thank you all very much.
Also a reminder that I run an organization that is going to be leaderless for a while. While I have full confidence in the team at Love Wins Ministries, they are going to need some help. If you are local and want to help out around the place, we appreciate it so much.
Renee on the phone with her dad, while waiting to go back for her heart transplant.
Wednesday, August 12, 2015 at 1:32am: Keep watch, dear Lord, with those who work, or watch, or weep this night, and give your angels charge over those who sleep.
Tend the sick, Lord Christ; give rest to the weary, bless the dying, soothe the suffering, pity the afflicted, shield the joyous; and all for your love’s sake. Amen. #KeepingVigil
Wednesday, August 12, 2015 at 3:17am: Grateful for the love and prayers around the country tonight while they operate on my girl. 8-10 hours of surgery feels almost like forever. The only wealth in this world is friends. #KeepingVigil
Wednesday, August 12, 2015 at 6:33am: Renee is out of surgery and, so far, doing well. We spoke to the surgeon, and he said the surgery went well, and he feels good about her recovery.
She is going to be sedated heavily for the next 36 hours or so. Right now she is being transferred to ICU, and I will be able to see her in about 2 hours. I predict I will crash shortly after that, so right now I am going to grab some breakfast while I can.
I am grateful for all of you, and thankful especially for those who sat up part of the night, keeping vigil with me.
Weeping may endure for a night, but joy cometh in the morning.
Wednesday, August 12, 2015 at 1:59pm: UPDATE: Renee Hollowell is heavily sedated, but doing well, all things considered. The right side of her heart is having to learn to adjust to the higher pressures in her lungs, so they left the sternum open to allow it time to adjust – they will finish wiring that closed tomorrow if all goes well. The pain from that is a huge reason for the sedation.
She will be sedated at least through Thursday night, perhaps longer. I got a good 3 1/2 hours of sleep, and feel great. The staff here has been amazing, all the way around, without exception. The surgeons are among the best in the world, and the amount of concern for our well-being (not just Renee’s) is truly amazing. I am thankful for these people, who feel called or led or what-have-you to this work. They are a tremendous gift.
My best friend Brian got in the car and drove four hours after we got the call yesterday to sit with me last night and tonight, to, as he put it, make sure I remember to eat and sleep. I can’t imagine having done this without him. His presence was a great gift to both me and Renee’s family.
Starting about noon tomorrow, I will be up here by myself, so if folks want to stop by for brief visits sometime between then and the end of the week, they would be appreciated. Just send me a FB message or email (hughlh at gmail)
I am grateful for all the ways people have reached out, as well as the practical things they have done. Please know I am grateful for you, even if it may take me a while to get back to you. Renee and I are loved far beyond our deserts.
Peace and all good, HH
Wednesday, August 12, 2015 at 6:06pm: Wednesday afternoon update: Renee is doing well – neural responses are good, earlier she was running a fever but they got it down.
Still zonked out, as she will be for at least the next 24 hours, maybe more. The transplant team is happy with how things are going. I am especially thankful to all of you who have reached out to the staff of Love Wins Ministries to see how you can help while I am tied up here. Knowing that people love you and have your back just takes fear away, you know?
“Love and ever more love is the only solution to every problem that comes up.” ― Dorothy Day
Thursday, August 13, 2015 at 9:44am: Thursday morning update: Renee is responding well to treatment. She is still heavily sedated to allow her time to recover, but they wake her up periodically to check her responses to stimuli, and those are going well. She told them (via the squeeze the hand test) that she wasn’t in pain, for which we thank the drugs. As I mentioned in an earlier update, they did not fully close her chest due to swelling (this is typical in these cases) and they thought it might happen this afternoon. That has been now pushed back to tomorrow. She will remain on heavy sedation until after that. If you want to come see us, please email or fb message me in advance, so I can make sure I haven’t ducked out to the Starbucks or something when you come. That said, we welcome friends for short visits. We are in the Duke Medicine Pavilion, on the 7th Floor (West Side). There is an amazing waiting room staffed by a helpful desk person, who will call the room and let me know you are here.
Speaking of the staff here – without exception they have been amazing, professional and, most helpful to me, non-anxious. As Renee’s primary care-giver until now, I feel largely useless here, and they have answered all my countless questions, paid attention to my many concerns and asked my opinion on things as regards to what is typical for her. I suspect this last item is to allow me to feel useful, but I am willing to embrace the delusion. I reached a point last night where I realized that these people not only are keeping her alive, but they saved her life, and have given us many more years together. I now have a near irresistible urge to hug them all, but I am pretty sure that is boundary crossing. 😉
I am grateful and appreciative of the many, many offers of help. As a person with ADHD, who has a really hard time prioritizing and sorting, but who also needs a lot of help right now, I have a favor to ask. If you could offer a specific thing I can say yes or no to (like, “Hugh, can I buy you supper on Friday”, or, “Hugh, could you use a place to come shower on Friday?”) it is much easier for me than the extremely nice, but difficult for my brain to sort, “Hugh, if you need anything, call me.” I just know me and my brain, and if you don’t give me a yes or no choice, I will probably not reach out at all.
Much love for all of you. I read your Facebook comments to Renee. The nurses say she probably can’t hear them, but I am choosing to embrace this delusion as well.
Since the transplant means we won’t get to the beach this summer, I thought I would just take a picture of my feet now and get it out of my system.
Thursday, August 13, 2015 at 7:03pm: Before transplant, Renee Hollowell and I had a lot of hard conversations, ranging from what I am supposed to do if she didn’t come back from the OR to how I am supposed to clean the house before she comes home. One of those conversations was about how much I am allowed to share with you guys.
I don’t talk much about Renee online, because she has always been fiercely protective of her privacy, especially being married to a semi-famous gospel preacher that talks on the internet a whole lot. But one of the things she wanted – in fact, that we argued about, and she won – was for me to tell the truth, and she insisted I not shelter anyone from the hard things. She really wants to demystify this for those on the list, the same way her sister’s transplants helped demystify it for her.
She specifically told me I should post pictures of her while sedated. Even so, I only shared them with family members and gave them the choice.
This is what Renee looks like right now. I am about six feet away, trying to stay out of the way, but this is my view. The doctors tell me this is the good side of normal for this stage, but to be honest, it is as scary as hell.
Thursday, August 13, 2015 at 9:38pm: Thursday evening update: Renee continues to improve. Her fever hasn’t returned, and her blood pressure, which jumped up a bit this morning, has returned to normal levels.
Her heart is working all on its own, without a pacemaker, for the first time since she was 13 years old. Life is a miracle. They continue to say she will have her chest closed tomorrow – what they are not saying yet is when. But after her chest is closed, she will be awakened, be breathing on her own and, within a short time, on her feet, walking the hallways. And 10 days or so later, home.
I weep sometimes, sitting here, watching her chest rise and fall. The nurse saw me do it earlier and asked if she could get me a chaplain. I told her it wasn’t necessary, as I had seen three pastors today and had two coming by tomorrow. She looked at me strangely and walked out. It is the truth, though – I just have lots of friends that are clergy.
Some people have asked about my self-care in this. I walk the hallways and sit in the gardens here. I am reading a lot. And while I don’t have the words to pray much right now, I am focusing on knowing I am loved, as is Renee.
In the second chapter of Mark, Jesus heals a man not because of his faith, but because of the faith of his friends. Right now, I am counting on the faith of our friends to see us through.
As always, visits are welcomed. I am beginning to reach out to folks and ask for specific things – if I haven’t gotten to you yet, I will. The next 10 days or so we are here is relatively easy compared to the month or so after that at home. We will need so much more help then.
Grace and Peace – eventually.
Friday, August 14, 2015 at 11:26am: Friday Morning Update: No changes in Renee’s condition overnight. But the reason for the delay in this update is that, this morning, she went back to surgery and had her chest closed. It was a fast surgery, so they sort of “fit you in” as space opens up in the OR.
They have done five transplants since I have been here – our surgeon has done three of them himself. Which speaks, I guess, to the level of expertise there is here. I have no doubt that the people here are among the best in the world at what they do. The gratitude I have for them is boundless.
Among all the other benefits, closing her chest makes her less fragile and easier to care for. Last night they had to remove a cooling blanket from her bed, and it took six people to lift her to do it. Normally, one nurse could do it alone. The next step is to step down her sedation meds and then remove her breathing tube – which should happen this afternoon. And after that, it’s off to the races – they will push her to be on her feet shortly after that.
Overnight they did her neuro checks, where they wake her up and check neurological function. This is one of my favorite parts – she opens her eyes and squeezes your hand and you talk to her and you know she hears what you are saying.
So, while she was near conscious, I told her about all of you, and that the kitties were OK, and that Dave went through surgery and had an artificial heart, and that Brian had sat with me and that all of you were taking care of me, and thus, her. I hope to have more to tell you this afternoon, but it is so far nothing but clear skies here.
Friday, August 14, 2015 at 7:23pm:I’m not gonna lie. I am straight up bawling over here. #GotMyGirlBack
Friday, August 14, 2015 at 9:22pm: Friday night update: I am short on words right now – Renee had her chest closed today, she was awakened from sedation and had her breathing tube removed.
Today was a good day. She is doing great – she is breathing on her own, she is alert and talking – albeit a bit groggy. She understands what is going on and is carrying on a conversation. In short, she is, in every sense of the word, alive.
They say that more than likely, she will begin walking the hallways tomorrow. She has a lot of hard work to do before she comes home. I am, honestly, a bit weepy right now, so I am signing off and will fill you in more in the morning.
Take care of yourself, and hug the people you love. Trust me on this. HH
Saturday, August 15, 2015 at 8:26am: Saturday morning update Renee had an uneventful night – which is good. I slept in two hour snatches, waking up each time someone came in the room to check on her, but still got more than six hours overall. After the last week, that feels luxurious.
She is alert, talking and advocating for herself. She is very tired, and is sleeping a lot, but when she is awake, she is fully Renee.
The goals today include weaning her off of some of her transitional medications, beginning to drink water again (she is currently not allowed anything by mouth), pain management and… walking! Of these, she is most excited about pain management and least excited about the walking.
The pain medication she is on helps, but the things she can take when she is allowed oral medication will work better, and last longer. After the weekend, she should be able to tolerate visitors, so please reach out if you want to come by and visit. I think it will help her spirits. Likewise, she loves getting cards – they can be sent to: Hugh and Renee Hollowell PO Box 26874 Raleigh, NC 27611 She CAN’T have flowers or plants here, so please keep that in mind.
I am overwhelmed with emotions around all of this. In one way, this part is easier – perhaps five times in our marriage I have been the husband at her bedside while she recovers from an operation, advocating for her and providing a non-anxious presence.
In short, I feel like I have been here before, and that makes it easier. On the other hand, this time is very different, as there is so much work in front of us yet. And then going home, where there will be even more work, as well as a return to real life, to work, to routine – to a new routine. To our new normal.
And recognizing that our new normal will be unlike anything we have experienced in our marriage thus far. For example: I am in New York a couple of times a year for work, and love it there. Renee has always wanted to go, but the countless blocks of walking, the stairs to the subway and the general lack of handicapped facilities have made that difficult to plan for.
So, part of our new normal means someday soon, I will be able to see the Statue of Liberty, Central Park and 8th Avenue with my girl. A new normal. Everything is new.
“Then I saw a new heaven and a new earth; for the first heaven and the first earth had passed away… And the one who was seated on the throne said, “See, I am making all things new.”
Saturday, August 15, 2015 at 10:11pm: Saturday Night Update: Renee is alert and conscious, still groggy but cracking wise with her dry wit. She has slow moments due to the pain, but they are working on pain management, and are trying to stay on top of it. She spent the first half of the afternoon sitting upright, and then they helped her stand up and walk two steps to a chair. She sat there a few hours, and then walked 10 steps to get back in bed (They had moved the chair – tricky folks). She is exhausted but pleased with herself.
She had Facebook messenger video conversations with family members – well, it was more like show and tell, since her voice is still weak – but it did her good to see them. I am tired, but grateful, basking in the glory of friendships and countless acts of love and community.
To all of you who have reached out, donated money, sent gift cards, bought my meal, sat in the waiting room with me, went with me to Starbucks and volunteered at Love Wins Ministries while I have been gone – Thank You.
Thank you for giving me this time with Renee, for letting me not have to worry about the demands of the real world while Renee experiences a medical miracle.
Peace and all good, HH
Sunday, August 16, 2015 at 10:27am: Sunday Morning Update: I woke up in the middle of the night from a deep sleep to a sound I haven’t heard since Tuesday night –Renee, with a loud and clear voice, carrying on a conversation.
The nurse had came in to check on her, and Renee was wide awake and asking questions. I wasn’t needed, so I just lay on the bench that has been my bed the last few days and listened to the sweet sound of Renee self-advocating and taking care of herself. It has never felt so good to know I wasn’t needed.
We spent the morning looking at pictures on my phone – emailed pics of the cats, pics of our friend who had his heart removed and an artificial heart installed, pictures of friends on Facebook. She told me her vision had been really blurry until last night sometime, when it cleared up. We are walking the line between too much pain medication, which knocks her out, and too little, which renders her senseless. But when they have it just right, she is perfectly Renee – maybe more perfectly Renee than I have ever known her.
They have completely weaned her from epinephrine, which was there to aid the new heart function. The new heart is ticking away exactly like it is supposed to.
Today looks to be a busy day. They are removing medications and hoses, they are removing the Swan Catheter (a big deal) as I type this, physical therapy is coming by this afternoon to get her walking in the halls and, if all goes well, she will be off all breathing treatments by tonight. If the trend continues, she will be moving to a step-down unit tomorrow afternoon sometime.
Grateful as we are for everything, we will still need lots of help in the days ahead. And one last thing – I am passing the time reading your positive messages with her.
If you have something to say to Renee, leave a comment on this post as if you are speaking to her: I will make sure she sees it.
As the man said, “Don’t worry about a thing, ‘Cause every little thing gonna be all right.” HH
Sunday, August 16, 2015 at 10:37pm: Sunday Evening Update: Today was mostly a good day for Renee. There is some frustration that she is so groggy all the time – the current thinking is that her pain medication is too high. She feels it too – she is now insisting they only give her Tylenol during the day as a way of clearing her head.
Despite the grogginess, she still made progress today. The Swann catheter came out, she was weaned off her breathing treatments and the additional equipment that was supporting all of that has been cleared out of the room. She walked down the hall today – perhaps 50 or 60 feet – and, when she is awake, is clear and alert. She just needs to be awake more. All of the nurses and doctors are praising her numbers and how well she is doing.
It does look like at least another full day or two here in ICU, though. Renee and I discussed it and decided that starting Tuesday, I will be spending some time back in Raleigh each day. There is a lot of work to be done to get the house ready for her to come home, and most of that is on me. (The cats are totally lazy and contribute nothing in exchange for their living there. At least the chickens provide eggs.) Those of you expecting to help with that should get emails soon.
When that happens, I will probably downshift to only one of these updates per day. I appreciate all the notes and messages. At this point, there is no way I can keep up with them. Please, if I have ignored a direct question, please, try again.
It has been amazing to me the way Renee’s story has connected with so many people. I have more than a dozen messages in my Facebook Messages right now that begin with, “You don’t know me, but…”
Here is hoping for a restful, uneventful, night. HH
Monday, August 17, 2015 at 10:34am: Monday Morning Update: Overnight went really well – other than waking up at 3am for a chest x-ray, Renee slept through the night. At 5:30 this morning, she was wide awake and at 6:00, went for a short walk. At 9:30, she walked around the hallway – some 450 feet. I captured that in a picture further up my timeline.
As I write this, they are removing one of her chest tubes (leaving only one) and have already removed all supplemental oxygen. She is breathing only room air.
Renee forgot her glasses when we came here, which normally isn’t a big deal if she isn’t driving. However, when we went for a walk, she swore she saw a deer in someone’s room at the end of the hallway. This alarmed the team, as they thought she was hallucinating.
Turns out, it was just a rack of hoses and tubes, which cleared up as she got closer.
Avoiding pain meds has helped with the grogginess, and she is tolerating the pain with just Tylenol so far. She is having bad headaches, but that is probably due to being waned off all the chemicals she has been living on the last few days. And right now, they are so pleased with her progress they are looking for a step-down room to put her in later today.
So things are looking good – really good. It is hard to remember that one week ago today was a perfectly normal day for us – a day when we were just “on the list”.
We had known this was coming, obviously, but had no idea it would happen so soon. Over the preceding weekend we had ripped all the carpet out of a room that we intended to turn into Renee’s room – a sort of art studio-cum-sitting room for her to recover in. But we didn’t get finished, and so there are boxes everywhere and a pile of now wet carpet on the porch and all of that.
When Renee got the call, she looked around and said, “The house isn’t ready for this yet.” So I am going home this afternoon, and will be spending some time at home every day in the days ahead to get Renee’s room ready for her. And if you have a truck and want to carry some boxes to Goodwill for us, let me to know – I could use the help.
We know the hard work is just beginning, but we aren’t scared. With such a cloud of friends around us, how could we fail?
Renee listening to her new heart for the first time. #AllTheFeels
Tuesday, August 18, 2015 at 12:54pm: Tuesday Update: (Updates are coming once a day now, unless something major happens.)
Life is good, and so is Renee. A week ago this morning, we got the call and arrived here at Duke. What a difference a week makes. I went home last night and slept so hard it was ridiculous. Nearly 8 hours of deep, solid sleep is a beautiful thing after 5 nights on that bench thing in ICU.
When I came in this morning, she was walking laps in the hallway- she did 2 laps in a row, or about 800 feet total. All the staff is impressed with her resilience. She walks with a walker, but here in the room can walk to the bathroom with only someone to hold her hand.
They are dropping meds left and right – she comes off the dopamine today, and had her last remaining chest tubes withdrawn this morning. Just a couple of IVs in her arm is all that remains. After a few days of dragging hoses and lines everywhere, it is pretty amazing.
Some of you may have noticed – she is on Facebook again but in a pretty limited way. She gets tired easily, so if you send her a message or post on her wall and she doesn’t get back to you, don’t be slighted. She spent most of yesterday afternoon getting caught up on all your posts and well wishes. It was a pretty emotional afternoon for both of us.
Tomorrow is a big day for Renee – it is her first biopsy (she will have them weekly for a while) and it will dictate a lot of her near-term future. It will tell us if there is any rejection, and will also, to a large extent, dictate how long Renee stays here. The absolute best case, Jesus loves us, best scenario is Friday or Saturday of this week. It could be much longer, of course.
I went home last night to work on Renee’s room. The house is still there, and the cats were excited to see me. Very little got done on the room, but that is mostly because I dozed off while sitting on the couch, and woke up and went to bed. I am home again tonight because I have something work-related tonight I can’t get out of, and from there it is 5 minutes to home and 40 minutes to here.
I have to be honest – I am freaking out a little about having the house ready for her, and all of that – I will probably stay home all day Thursday and just work on that. I am trying to focus on her positive reports, and not focus on the mounds of medical bills we are racking up and the weeks of aftercare that are coming.
Yes, I know all y’all want to help, and information on that is coming. I am just focusing right now on not freaking out. You see, I am a post-processor, which means that as long as we are in crisis, I do great. Now that the crisis is calming, I am going to have to deal with everything I have locked away for the last week.
One of the things for which I am most thankful the last week is the Starbucks in the lobby here at the hospital. It is a real Starbucks – with earth tone colors, faux leather furniture and slightly over-roasted coffee.
Inside of there, it feels like every other Starbucks I have been in – I could be in Boise or Manhattan or Memphis. It is a soothing, normalizing experience to do something so normal as to order a Grande cup of Pike’s Roast, with some room for cream. They are open 24 hours a day, so it has been my touchstone place the last week – I have been there 4-5 times a day. (And thank all of you who have sent Starbucks gift cards. You guys have helped me keep my sanity.)
Peace and all good, HH
Wednesday, August 19, 2015 at 2:56pm: Wednesday Update: Renee is continuing to improve. We are now one week since the transplant itself – it was 6:30am on Wednesday the 12th when she left the operation room with her new heart. They say the younger you are when you have your transplant, the faster you recover, but this seems amazing to me.
She is sitting in her recliner in the room most of the day, with excursions to walk the hallway and to get up to go to the restroom. She does easy laps around the hallway now, chatting the whole time. Renee has never, in the eight years I have known her, walked and talked at the same time – she simply couldn’t.
While I am writing this, we are waiting for her to get her first heart biopsy. This is a test she will take often – weekly for the first month and then bi-weekly for a while after that – that tells us whether her body is rejecting her new heart. The results of this test will determine when we get to go home, but we won’t know the results until tomorrow.
I am working on the house when I am not here – there are lots of things to prepare for Renee’s arrival. One of the best things for Renee’s recovery is that she maintain her physical activity – but she can’t go to the gym for a while, because of her compromised immune system.
We bought a recumbent bike today on Amazon, to put in the spare room for her to use in her physical rehabilitation. Thank God (and the many folks who have sent Amazon gift cards) we had just enough gift cards to cover it.
While I am on that subject – the bike is just one example of the many “not medical and thus not covered by insurance” expenses we are having right now, and will have for the next few years. Thank you for all the people who have sent gift cards – Amazon and otherwise. We really do appreciate it, and they help more than you know.
Tomorrow I should know more about the results of the biopsy and have a good grasp on discharge dates. #FeelingLoved HH
Day 10 Friday, August 21, 2015 at 11:24pm: Friday update: We were released from the hospital around 4PM, after Renee was disconnected from the monitors, had the last of the IVs removed and a parade of doctors, pharmacists, nurses and Physician’s Assistants came through, each with instructions and often, papers for us to take home. But finally, the last paper was signed, they called the orderly with the wheelie cart and us, many more bags than we came with, a walker and a bedside commode made our way down to valet parking to load up the family truckster and make our way home.
And now – we are home, Renee is sorting her mountain of medication and the kitties are up to their typical shenanigans. I made chicken tacos and we had dinner and everything felt remarkably… normal.
Except, it isn’t anything at all like normal. We have a pile of medicine on the kitchen table that says it isn’t normal. We have a bedside commode and a walker (both of which should be temporary) that says it isn’t normal. She fell as we came in the house, part laughing and part crying – not normal.
And Renee has a heart in her chest with no wires attached for the first time since she was 13, a heart beating so strong she says she can hear it in her ears. Nothing is normal. Scary? Yes. Amazing? Absolutely. Emotional? You have no idea. But nothing at all like normal.
The last 10 days or so have been life altering – for both of us. Renee has a new heart, I have a new wife. I told one of the doctors today that Renee walks and talks now – she never did before. I told him that I thought she was just quiet, but maybe she isn’t – maybe it was just hard for her to talk. I have never been married to Renee as a person who could be active.
She has never not needed me to help her. We are new people, in a new phase of our lives, looking forward to our new normal. We have felt tremendously loved over the last 10 days.
I don’t have the words to say everything I feel toward the folks who have prayed for us, loved us, called and texted, sent gifts and cards, donated cash and sent gift cards.
Especially the gift cards – they made survival possible. I ate my first meal at home tonight, after eating out for 3 meals a day for 10 days. Chicken tacos have never tasted so good.
The struggle isn’t over – in fact, it is really just starting. I had to call a friend tonight to sit with Renee while I went to the store – that sort of thing is going to have to happen a lot over the next few days.
Renee had the following conversation with the pharmacist:
Pharmacist: That medication is $94.
Renee: I thought insurance was supposed to cover it?
Pharmacist: Your insurance paid $1156 dollars of it.
Wow. Thanks, Obama. We are looking at so many medical bills in the weeks to come. The number of medications she is on is staggering. Just her moving around out little house is a challenge.
One day soon, I am going to have to go back to work. Life doesn’t stop just because your whole world changed.
This will be my last scheduled update – life at home moves at a slower pace (hopefully) than life at the hospital.
I will resume my regular programming – being the lovable curmudgeon whose love language is pot-stirring. I have been touched by the response to my daily posts – I am collecting them and will eventually publish a slightly edited version of them at my blog as a daily diary of such.
Given the reality of our financial situation, there will probably be a gofundme in our future to help with the medical bills. So much to be scared of. So many reasons to be afraid. But, at the end of the day, what matters to me is my girl got a new heart, and that is worth any amount of fear.
And we are always mindful that the reason she got that heart was because someone decided to donate their organs, paying the gift of life forward.
That a family we do not know engaged in an act of pure love – they didn’t love us, they just loved the idea of us – and to them, that was enough. And we are grateful.
The future is bright. And filled with fear. And so much love. According to John, love casts out fear. I am not just hoping that is true – we are counting on it.
As a creative person with a large imagination and a raging case of ADHD, who is mostly introverted and moderately depressed, I often don’t get everything done I want to get done. And at the end of the day, when I am looking at that long to-do list with the things not yet done on it, it is easy to get overwhelmed, which only makes it more likely that I will get less done tomorrow.
So I have a simple hack I use to get stuff done: Make sure I have one “win” every day. I identify a win as anything that moves me closer to any degree to my goals. So, since I want to eat healthily, eating a healthy breakfast would be a win. I want to have strong relationships, so writing an emotionally hard email would be a win. Or maybe I ran today, or maybe I sat on the couch and took the day off, but read that book that has been on my to-read pile forever.
The point is, at the end of the day to be able to look at what you have done and realize you had at least one win. Now, you probably had more than one, and that’s great, but you only need one, and you need to recognize it.
If you only had one a day, that is nearly 400 times you made positive moves toward the future you want in a given year, and that is pretty amazing and powerful by itself. But also, going to bed while not being frustrated with yourself is life-giving.
Those of us who are in the helping professions seldom end up having 40 hour, structured workweeks. Instead, we are often responsible for creating our own schedule, which always involves other people’s schedules, which can lead to long, unstructured days.
For instance, I have an office, but am only in it three to four hours a day, with the rest being nighttime meetings, breakfast meetings, coffeeshop meetings, or time spent out in the field. And I still have paperwork to do and writing to do, and all the other sorts of things people expect me to do.
If I’m not careful, I can end up having a day where I have a breakfast meeting at 7:30, get to the office at 9:00, have a lunch meeting at 1:00 PM, spend time in the field until 6:00, where I grab something in the drive thru on my way to a seminar I am supposed to teach at 7:30 PM, and finally get home at 10:00, exhausted.
And for many of us, this sort of thing happens all the time. It is really easy to have a workday that spans 12 or 14 hours, and we wonder why we are exhausted and burned out.
Or maybe we are really good at sticking to eight hour days, but we end up giving up our days off to “just catch up”.
A technique I have learned that has really helped planning my days and weeks. It goes like this:
Your day is split into three units: Morning, afternoon, and evening. You have two goals – don’t work more than two units any given day, and don’t work more than 12 units in a given week.
For the days, you shouldn’t work all three units in a given day. So, if you know you are going to have night meetings, schedule your day so you are not working that morning or afternoon. If you have a full day packed from 9-5, don’t schedule anything that evening.
For the weeks, if you know you have to work Saturday morning and have a presentation Tuesday night, you are already starting the week with two units filled. Throw in a Thursday night meeting and we are up to three, which means, if 12 is our goal, that we can’t work full days the rest of the week.
I find this much more helpful (and realistic) than counting hours. It is easy to wrap my head around, easy to plan around and imposes structure. It turns your calendar into more than a device for recording your appointments and meetings, but rather a framework for structuring your life.
Question: Do you have any “rules” for structuring your week?
A long, long time ago, I went through Infantry School in the United States Marine Corps, where they taught us how to “locate, close with and destroy the enemy by fire and maneuver and/ or repel enemy assault by fire and close combat.”
Marines study such things, and they purport to be the best in the world at it.
And in Infantry School, they taught me that if you are walking along, and suddenly your squad is ambushed, the thing you have to do is turn and run toward the fire.
You won’t want to. You will want to run away from the chaos – it’s only human. But if you do that, you will die. Guaranteed.
The only way to survive is to override your instincts and run toward the fire.
I think there is a lesson there that is applicable far beyond war zones.
* * *
I was telling this anecdote to a friend the other day, and she said that the fire wasn’t just when you are being attacked: The fire metaphor works in other circumstances as well.
“When you are in a world of shit, some of your friends will run from it to save themselves. And others will run toward the fire, instinctively, to save you.”
I told her I wanted the second kind of friends.
“Oh, I do too. But the problem is, you don’t know who will run toward the fire until there is a fire.”