whispering at the top of my lungs

by kaleidegirl

on July 29th, 2017 i got the most important call of my life. it was “the call”, possible donor match, new lungs.

i asked Chris to take pictures during this process and he did. he even got a couple videos. it was a 6 week ordeal in the hospital and recovery continues here at home.

not everyone is on FB or just not very often so because of that and wanting to keep a detailed record for myself, i’m putting together this post. i’ll be using updates put up on FB by Chris, Kayla and Mary and the pics and videos i have. this is mostly because i was heavily sedated, repeatedly because of my drug resistance. my recollection of events is pretty useless.

i will try to keep it all in chronological order.

**this link is too my fundraising page through NFT, National Foundation for Transplants. It has all the early info about my situation.**

http://give.transplants.org/site/TR/NFTPatientsandLivingDonor/General?px=1003336&pg=personal&fr_id=1040

 

and so it begins….

i was sent to the ER in Ionia because i was needing too much oxygen to safely get to Ann Arbor. Ionia transferred me by ambulance to UofM and was there for, i think just over a week. i had declined quite rapidly so the drs repeated some tests hoping the results would increase my LAS and they did, it went from 36 to 52. they got me stable enough to come home. i went home on the 28th of July and made this post on FB…..

July 28,2017 *me*

~~~Wow.
Doing things is very hard.
I knew I would need lots of oxygen and I knew I would have to go very slow and rest a lot.
I just didn’t expect certain things to be so hard. I am unfortunately going to have to spend most of my time sitting. There is just no way around it. I’m going to need that wheelchair when it comes and that really bothers me and I’m sure will annoy Chris, wait, I need to stop assuming things will annoy him. I hope he will be honest with me if it does.
So if you are so inclined I would love to hang out and be social. It has to be here and preferably during the week when Chris is working.
Oh I hope my call comes soon.~~~

i was able to get a good shower in that day and the next day,  nice steak dinner and some red wine, and of course long over due sexy time. then…

July 28, 2017 (around 10pm) *me*

~~~I just got the call!

We cannot handle calls right this minute. So sorry!!! But thank you all for your support!!~~~

July 29,2017 *me*

~~~My loves.
Yes, those are Mary’s feet. She just climbed up on the window sill to sleep.
I’m hoping I can sleep.
Surgery is at noon.
Hoping the lungs are good.
Very grateful for the donor. Their family mourns but their loss gives another family hope. 
Thank you ALL for your support, good vibes, prayers, everything.~~~

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Mary    July 29, 2017
~~~My mom has been in the OR since 1:30. I have not texted or spoken to her since then and it’s kind of awful.
Hopefully only a few more hours left, and then I will be back tomorrow.
Please send all your love and good vibes to my mom.
I love you Jennifer Elise Hildenbrand ❤️❤️❤️~~~

Chris    July 30, 2017  
~~~Another update for Jennifer Elise Hildenbrand. She’s been awake for a few hours now and they have been working on lowering her oxygen via the breathing tube that the put in last night, once that’s gone she’ll be able to talk. The Drs and nurses have all said how great she’s doing. She has been in some pain but they were just able to give her an epidural to help with that. Currently were restricting visitors to family (including Kayla M. Sevrey Donaldson and Carolyn Teriesa Dennis) for a few days until she gets moved to the step down unit. I’ll send a mother update, hopefully on Tuesday about visiting. Currently everything is going really well though.~~~

 

Mary 
~~~An open letter to my mom..
I love you. I am inspired by your courage and your positivity over the last few years. With all the ups and downs, the scary moments and the good ones, you’ve stayed strong. And now you’re done. Just a few months of serious recovery and then you will be living a whole new life. You will be there for my wedding, oxygen free. You will there for the birth of my children, oxygen free. You will be healthy to chase my kids around after you’ve fed them sugar for lunch.
When you were first diagnosed, having to face your mortality was the scariest thing for me, because I cannot live without you. The intense and serious surgery you just went through scared me more than you, I think.
But you did it. You were wheeled out of the room with a smile, while I was crying wishing I could go with you, fix your lungs for you with a magic wand.
Right now you are sedated and hilariously loopy, but when you see this you will be breathing on your own, with new lungs. And maybe you’ll cry, hopefully you smile. And you’ll comment how much you love me and you will spend a decade responding to all the messages on your phone.
I’m so so proud of you Jennifer Elise Hildenbrand. ❤️❤️❤️❤️😘~~~

Kayla 
~~~I’m here with our woman Jennifer. She is pretty sedated but was super excited to see me. She will be better with the tubes out. Ill be a real friend and wait for the tubes to be out of her mouth before I post pics. I’m going to just sit here quietly and let her sleep. We all really needed a win. Thanks for being that win Jen~~~

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Kayla M. Sevrey Donaldson  August 4,2017
~~~Jennifer is still back on the breathing tubes and under heavy sedation. The intense pain was freaking her out and the anxiety made her unable to breath. I’m praying that Jen’s team at the hospital can get her pain under control so she can get back to using her new, fully operational lungs. She is okay. We’ll just have to take recovery a bit slower than initially. The best thing for her healing is to be up and moving around so that her lungs will exercise and get stronger. Also, blood clots can be dangerous from lying still for too long. We want everything flowing. Unfortunately, but fortunately, Jen is doing everything in her own time. She is healing. She’ll just be starting slower this time. The Dr’s are giving her a few days of induced rest before we begin again. Thanks for your positive vibes, yo. My best friend is going to make it!~~~

St. Robert watching over me. Thank you Patty!

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Kayla M. Sevrey Donaldson    August 5, 2017

~~~Jennifer is being difficult. She is being a bit too feisty about trying to heal. She is all the way sedated and the Dr.’s are going to give her a med to paralyze her so that her body can’t do anything but heal itself. Thoracic surgeon said that she still looks good. For now though, the machine is doing all the breathing for her. We need Jen’s body to relax and her mind to be at peace for this transplant to work. For now though, she is unconscious and being guarded by me until Mary gets here. More info as things change.~~~

 

Kayla  August 5, 2017
~~~Jennifer Elise Hildenbrand update: She is going back to the operating room. She will have an IV in her neck that will pump O2 into her blood so that the breathing ventilator won’t stress her tender lungs. This means she will be able to be up and walking about again soon with just a cannula. There isn’t a diagnosed problem. Jen’s lungs are just needing time to heal. Keep those prayers and mojo coming!~~~

Keep Jennifer Breathing Guild  August 6, 2017
~~~Most recent report on Jennifer: She’s currently not doing very well. Yesterday they performed a surgery to put her on an IV ECMO (extracorporeal membrane oxygenation) it acts as an artificial lung by pulling blood, removing the carbon dioxide re-oxygenating it and then returning it. This is to allow time for her lungs to heal.
Currently they have the problem narrowed down to 3 things: pneumonia, reperfusion injury or rejection. They don’t think it’s pneumonia due to the antibiotics she’s been on, but it is possible.
The reperfusion injury is likely as it isn’t uncommon with transplants, but it is also possibly rejection.
The problem being that the treatment for these 3 things cause issues with the others so they have to be very careful with treatment. For instance, with rejection they gave anti rejection meds but those contain high dose steroids which would slow down healing. So, if they took that step and it turned out instead to be pneumonia it would cause problems.
The plan currently is to get het stable and then extubate which would allow for her to be awake and doing pt. That is likely not going to happen today as there have been some issues with positioning with the ECMO to get it running as it should. They do seem to have that under control though so hopefully it won’t be pushed back further.
In the meantime, there isn’t a lot going on and I likely won’t be posting many updates until there are some major changes. At this point it’s just a waiting game. A pretty scary waiting game.~~~

Kayla   August 11,2017

 ~~~At UofM hospital with Jen now. You haven’t heard many updates yet because I have stayed away from her while she is trying to heal in a perfectly sedated environment. Chris was here so she was being watched over by the one who loves her most. I was also horrified I may bring in some new bacteria. 

At this moment, Jennifer is mostly unconscious. Her eyes open in slits sometimes, but she’s not really here. She is still in a critical state but she is definitely improving every day. She is still on the ECMO and still intubated.
Tubes and wires and beeps and the sound of machines breathing is the current gestalt of the room. This time no Cure playing in the background. Her state is critical but hopeful. The positive energy in this room is thick as bricks. Thank you for all of it.
She just needs to keep doing what she is doing. More later, Tater.

 

Kayla August 11,2017

~~~The new procedure is plasma replacement. Thanks to all you skanks who donated yours. Her x-rays look great. Her O2 and fluid levels are looking good and evening out. She still has the huge ECMO tube in her neck cleaning out CO2 and giving her O2. Her lungs are doing a tiny bit more breathing on their own, but she still has the cluster of breathing tubes going down her throat. Everything is being done in tiny bits. Jennifer is still sedated, but she opens her eyes a little from time to time. I make fun of her and keep her updated on what’s going on around her. We’re not out of the woods yet, but at least we’re out of the dark and scary part of it. Stayed tuned for more updates…~~~

Kayla  August 11, 2017
~~Last Jennifer update of the day- at this moment Dr’s are moving her to a prone position, i.e. face down. This will take her body weight off her lungs (lungs are closer to your back). She will be lying like this for the next 16 hours. She is as of now paralyzed and completely unconscious. The goal is to let her lungs heal enough so she can wake up and move around just a little. Everything that is happening are baby steps toward baby steps. As long as the pace moves her forward to recovery we are headed in the right direction. But we have all the patience in the world for her, don’t we?~~

Kayla   August 12, 2017

~~~Morning Jennifer report- It takes over an hour to move her from her stomach to her back. In 12 hours they will flip her over again. The team tried a few new things on her yesterday but nothing made a major difference either way. She is still slowly healing, slowly improving, and totally unconscious through all of this. She’s still kickin’ chicken! I saw all of her incisions this morning. I’ve been identified as “her sister, whose handwriting is tattooed all over her body.” I dig it. I’m changing guard with Mary this cloudy Ann Arbor morning. If I don’t post anything it’s because nothing has changed to report about.
As Jen would like to remind us, “Every minute, every hour, is another chance to change. Life is beautiful, and terrible, and strange.”~~~

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My pup Siobhan came to see me Sunday evening. Mary and Amy were kind enough to bring her.

Kayla    August 14,2017
~~I’m with an awake Jennifer. I sure did miss those beautiful blue eyeballs. She looks great for a lady with a lot of tubes. Tomorrow about noon she will get a tracheotomy so they can essentially move the ventilator from her mouth to her neck. She is using her new lungs but with a lot of help from the ECMO. She is coherent if not complacent with the state she woke up in. I’m going to keep her company for a while more. We are still on a long road to recovery but we are certainly moving forward down it. Keep them prayers coming!~~
Chris   August 14,2017
~~Even though I can’t be at the hospital for a few days I’ve talked to a few of Jennifer Elise Hildenbrands doctors today. She has shown improvement and is awake now, she will be having a procedure done tomorrow that should help in weaning her off of the ventilator. If all goes well that could happen this week. The ECMO settings are also being lowered so that she can have that removed as well. Definitely not out of the woods yet but I’m very happy about the improvements that have been happening over the last few days. Thank you to Kayla M. Sevrey Donaldson who is always there for her when I can’t be, it’s really hard for me to not be there but I know that sh’es in good hands.~~
Kayla August 14,2017
~~~YES! Jennifer is healing so super fast all of the sudden that the Dr’s wanted to give her a tracheotomy so that she can move around more and we can work on getting these tubes out of her neck! She still can’t talk yet but best friends can say a whole lot with just our eyeballs. We are on an upswing folks! More updates will come once she is out of surgery. BTW NO FRESH FLOWERS PLEASE! They carry a bacteria that would be deadly to her lungs right now. Next week on flowers. At this moment, Jennifer is cleaned up and doped up for the night. Ill stay until I’m sure she is asleep. Then I will pray over her. Then I will be back by 8 a.m. Peace out from Jenville!~~~
Kayla August 16, 2017
~~~Jennifer is looking even better today. The ventilator is out of her mouth. She still has the ECMO but the tracheotomy should help get that out even sooner. I wish I could read mumbling lips. She is breathing more on her own. Our prayers were heard. Either that or the staff took serious my comment about having to fight me if she didn’t look perfect when I came back. I’ll take it. Hallelujah! Pictures soon.~~~
Chris August 17, 2017
~~~At the hospital. Jennifer Elise Hildenbrand is awake but still on a good amount of pain medication so not totally with it but certainly more than when she was sedated too. She is slowly getting better, no big changes but it’s definitely nice to be here with her being awake even if she isn’t able to talk yet.~~~
Chris August 18, 2017
~~~Things have been going very well today. Jennifer Elise Hildenbrand was taken off of her if pain med last night and switched to pills. For the past hour and a half or so she has been off of the ECMO and just using the ventilator as well. If she continues doing well without they will likely remove it in a few days. She also had her second to last pladma treatment whe tbey had her off of tbe ECMO and tbe dr hanfling tbat said she was doing very good also. She’s currently resting a little before she does her PT like she did yesterday and then I imagine she might nap a little as she’s had a pretty busy day so far.~~~
Kayla August 21, 2017
~~~Jennifer Elise Hildenbrand is looking good. Dr’s are very slowly working on getting those dang hoses out of her neck. I’m just talking her ear off until her p.t. starts~~~
Kayla August 27, 2017
~~~Jennifer Elise Hildenbrands ECMO tubes come out today!!! Weaning her off the tracheotomy is the very next step! Hallelujah!!!~~~
Chris August 24, 2017
~~~It’s been another good day. Jennifer Elise Hildenbrand had the ECMO removed yesterday and has been doing great. Today they removed a couple of lines that had been in for a few weeks which I was glad to see go. More importantly though she’s been sitting in a chair next to me for the last 6 hours and using the vent just for pressure while breathing on her own! They have also been working on slowly lowering those vent settings and the plan is to try to turn it off completely for up to 4 hours tomorrow. After that they will continue to increase the time it’s off until they know it isn’t needed anymore and then she would be having it removed and leaving the icu.~~~
Chris August 24, 2017
~~~Another big day for Jennifer Elise Hildenbrand her two large chest tubes are currently being removed along with the catheter. That will only leave the two small chest tubes which will be removed in a few days, the low level oxygen support through the trach which should also be removed in a few days and the feeding tube which will be removed when the trach is closed. In addition the order was put in for her transfer to the rehab floor where she will complete her stay here. It may take a day or more for her to move as they have to wait for a bed to open but she should be out if the icu very soon. Now she needs to focus on getting her strength back through pt.~~~
Chris September 1, 2017
~~~Things are going pretty well here today. Jennifer Elise Hildenbrand has been using the vent again for about a week but is stepping back down again to get off of it. However with using the vent she has also been pretty active having pt everyday and getting up and walking (with assistance currently). She has been getting less and less help from the vent each day and at the same time being more active so she is definitely making progress and getting stronger everyday. Today was also a mini spa day for her, she was able to get her nails trimmed which will make using her phone and iPad much easier but also got her hair washed and conditioned. Later I’ll also massage her hands and feet with lotion. In addition she now has some of her jewelry back, her wedding rings and her ear rings (as soon as she wakes up). If you would like to visit please let me know so I can give you her room info and to be sure the timing will work for her. Hopefully soon she can provide some of these updates herself.~~~
Me  September 9, 2017
Chris says i need to do the updates now that i am able.
~~unfortunately i am feeling queasy so this will be short.
my anxiety has gotten pretty bad and of course they are still against giing me what works. hopefully when the psych dr finally comes back, i assume Monday, i can get him to be reasonable and tweak my meds.
~~
my PT wants me to get in 4 walks a day but so far the best i’ve done is 3. my second walk today i walked the whole unit,”the loop”.
~~
my trach was supposed to be down sized for the third day in a row. they say tomorrow. but once that happens, pulmonary can order up this special valve that will allow me to speak.
~~
we we’re also told i’ll be getting moved to a general flood but still have a private room and an actual bathroom with a shower !!!!!! also quieter and less monitoring. as in not getting my vitals checked every 2 hours.
~~
i’m ready for this part to be over. i miss home so much. i’m grateful but its hard to sit here with these new lungs and still feel short of breath. my numbers are great, i can sit in room air and my sats stay above 90. i need a little for my walks but that is normal i guess. i am told this shortness of breath is normal. that those muscles need strengthening up just like everything else.
~~
so much love to everyone. all the prayers, well wishes, good vibes, and cheering me on. its always a surprise to see comments about people being so happy to see me online. also the cards and gifts.
~~
my eyes are blurring. probably a new med. off i go to hopefully get some sleep.
Me September 10, 2017
~~~I’ve been moved to a general floor. I may even be able to have flowers. Gotta ask my nurse.
I can also speak again. I have a smaller trach cannula. Breathing a little better and barely coughing anymore.
So if you want to visit….
2 rules
Only 2 people at a time
You have to go for a walk around the unit with me. It’s what will get me strong and home.~~~
Me September 12, 2017
~~~Jennifer Marley, Mercy and I had our last dinner from the U of M Cafe together for a good loooooooong time. My girl looks great. She is ready to go home tomorrow morning! Thank you everyone who went on this adventure with us. Many nurses from the ICU to the general floor talked about the proof for power prayer. Whatever positive energy you focused toward my sister helped her. She is weak from surgery recovery. She is on a bunch of meds, plus anti-rejection meds for the rest of her life. 
Life. 
That’s the only word that matters, life. She has another lease on life. She will be at Mary’s wedding, and she’ll get to snuggle that grandbaby. She’ll be at my birthday parties, and she’ll be there to answer the phone at 10 a.m. when I can’t stop crying… again. Please donate your organs. Pretty please.~~~
~~PHOTOS~~

 

so here i am entering the next chapter of this insane journey.  now for the long road of real recovery ahead. my legs are week, like noodles.  i have to walk as much as i can everyday and patiently wait for my breathing to return. i currently need 24/7 care but i hope for not much longer. the last 2 nights i was able to brush my teeth standing up. considering how bad my balance is that was a huge accomplishment.

definitely making progress every day, if only a little.

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