“Accidentally on purpose…”

the attention just encourages her..

I’ve been home just over a week and i’m really doing so much better. the first couple days were a bit rough. i was emotional, frustrated, swamped with calls and setting up “mommy sitters”.  Now i’ve got to set up rides to appts. the appts will never end but over time they will be fewer and farther between.

the last 2 years have been quite an experience. i feel like i handled the need for supplemental oxygen fairly well. sometimes i was stubborn and neglected to turn it up when i should have or simply did more than maybe i should have and just suffered the consequences.

i struggled to get my BMI down to where the drs wanted it so i could be listed for transplant but otherwise getting on the list was fairly quick and easy.

somehow i knew i wouldn’t have to wait long. i had no real reason to think that. quite the opposite. i was somewhat healthy and stable until July and i have a rare blood type. somehow though i just knew, i would get that call sooner than later.

when my daughter got engaged and set a date for the wedding for next August, i became quite impatient. i was determined to be at that wedding, on the beach, breathing on my own without a giant oxygen tank.

here i am, breathing room air, only needing oxygen when on the treadmill which is temporary. i’m already getting around the house ok with my cane instead of my walker. i showered yesterday standing up, only using my shower chair to shave my legs. i did take a hard fall on Monday so i am extra cautious now.

they say when you get a lung transplant, or i suppose any transplant, you are trading in one set of problems for a another but so far, i much prefer this new set of issues. it gets easier every day as i get stronger.

i’m really looking forward to the holiday season this year. i’m getting my halloween costume together and plan to go trick-treating a little with Mary before sitting with Chris to hand out candy.

at thanksgiving i won’t need any help getting food or anything because i won’t be carrying or dragging oxygen.

this year at x mess i can take pictures again like i used to. i won’t have to carry or drag around oxygen.  my only real issue will be protecting myself from sick people.

~~~~~~~

my weight has gone up about 5#. this is to be expected to a certain extent but i’m sure it is not just regaining muscle which weighs more than fat but is actually due to some poor food choices. once i got some kind of appetite back i got a little carried away. i’m going to work on getting back to my cardiac diet and make sure to exercise as much as i can every day. i’m really looking forward to more acceptable weather. by the time this heat wave subsides i should be able to walk out side and maybe even walk Siobhan.

i’ve been extra moody lately and its really bothering me and i’m sure its no fun for the only person i’m taking out my frustrations on. he’s just been so contrary. disagreeing with almost every single thing i say. i’m sure if i said “wow the sky is so blue” he would respond “well its more grey than blue”. instead of “yeah is sure is” or something like that. i feel like we are always arguing because of this. its like constantly being told i am wrong about anything i say.

so there’s that.

~~~~~~~

i did something today that i hope i don’t regret. i called my bio mom. i just left a message. i figured with the transplant and almost dying and all that i should let her know but mostly i thought if her other kids still talk to her they should know. lung disease can be hereditary. they actually suspect i was genetically predisposed. i really very seriously hope my daughter is not at risk. anyway, i figure if she calls and gets obnoxious i will tell her never to call again and block her number is she does. people often ask about her and until today i didn’t even know she was still alive. she isn’t my mother though. she never will be. i have a mother. a loving, supportive and wonderful in every way mother. calling this other one, this abusive train wreck was a spur of the moment, already regret it, act of pointless kindness.

~~~~~~~

i’ve been invited to be on the news and i’m nervous but excited about it. more on that if and when it actually happens.

~~~~~~~

so i’m doing better. i’m doing what i’m supposed to. putting in the work.

i am grateful and appreciate your prayers and good vibes while i continue this fight.

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whispering at the top of my lungs

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.

no need to be inspired, i’m not doing this alone

my nurse was loud and inconsiderate last night. not rude just didn’t seem AT ALL concerned with the fact that sick people need sleep. i know if Chris had been here he may have given her a what for like he did the night before and i don’t think that would have gone too well.

i’ve noticed when i have one of the not so awesome nurses it is at night. now i’m not nurse bashing here. i love and respect nurses for all they do. they just aren’t all as awesome as Katelyn. who i think is actually a newbie.

my trach cannulaa was supposed to be downsized for the last 3 days. yesterday they said they would do it today. its getting pretty frustrating. they are literally holding up my getting discharged. every new step towards leaving requires a day or two of observation to be sure i take to it ok. once the trach is downsized i can get a speaking valve and i guess couple days after that i can have the trach removed. it sounds like aside from that i just have some learning about the new rules of my life. like a sort of teaching class type thing.

*dr just popped in to say they are coming to downsize my trach. she’s also going to give me IV ativan. my anxiety has been off the charts*

~~~well that was absolutely awful. the skin around the balloon in my trach had started to heal around it so she had to give me lidocain and add to the incision to get it out.~~~

~~its weird, i’m recovering and healing much faster than anyone expected yet i feel like i have a long wait to get out of here still~~

i totally won’t lie. i’m feeling a little bitter. i feel like its terribly unfair to wake up still short of breath and having to relearn how to walk because my body was so deconditioned. i’m doing better at getting around but if i didn’t feel so short of breath i know i could do so much more. i can sit in room air just fine but once i get up even to take a couple steps i get short of breath and my legs still wobble a bit. i’m just so frustrated. it seems like every procedure involved with this process is a shit show. my biopsy 2 years ago was a nightmare and the last few weeks here has been even worse at times.

~~

did i really work hard enough to get strong for this? did i follow the rules? is it all a punishment? is it a bad dream i will never wake up from?

i know these things are different for everyone but i’m too young and healthy for so many complications.

acute rejection already.

hands trembling worse than ever.

blurry vision.

upset stomach every morning.

need sleep.

and Chris is at home working on a huge cleaning list. so sure i’m coming home this week. *no pressure or anything* though i do hope he’s right.

~~

so i have my downsized trach cannula and my speaking valve.  i think i might go ‘live’ on FB for the first time ever. i do of course need some make up first.

one of my doctors said something very inappropriate a couple weeks go, right in my room at the end of my bed. “she just needs  fire lit under her ass”. later that day my social worker came to see me and was appalled.  surprise surprise, she’s been super sweet ever since. so much so that she spent a good half hour in here trying to help me through my anxiety. she even suggested a therapy dog which she expected me to laugh at but Siobhan is actually a service dog. so Mary is coming today and bringing my pup.

sorry this blog is all over the place. my mouse is acting up and i’m distracted by the storms. worried about so many people in danger.

better luck next time.

my lungs suck at being lungs

today is my 11th day in the hospital. i attempted to sleep in because i am NPO, nothing by mouth, because of a test they are doing today. at some point. they have to just fit me in when they can. they said the most notice they can give me is about half hour. it is annoying because i haven’t had anything to eat or drink since about 10pm last night. just sips of water to take meds. also not knowing when bothers me because my daughter is coming to see me. she says she’s bringing her laptop so she won’t be bored if she has to wait for me.

the drs ordered these tests in the hopes that the results will increase my LAS. this would help me get my call sooner. it is sort of like bumping me up on the list. even though the list is more like a pool.

i’ve already gotten one test done. the breathing test and 6 minute walk. the breathing test show my lung function and the walk is to be sure i can walk 450 feet in 6 minutes. it is a requirement for being on the list. i wasn’t worried about the walk. i have been walking something like 3000 feet every day 2 to 3 times a day. granted i need a lot of oxygen and have to walk slow but my body is staying strong and that is what matters.

the tech who did my testing is one of my favorites. she’s very nice and funny and we get along well. she calls me the queen of darkness or something and she was very amused to learn that i am afraid of the dark and very photosensitive. she made it easier to deal with the difficulty of the test even if she was a brat. 🙂

in order to get to the pulmonary function lab for my testing i had a special transport team called SWAT, “Specialized Workforce for Acute Transport”. they are specially trained nurses and EMT’s. there were 3 of them and they loaded me up on a stretcher with all of my monitoring equipment and made sure i was safe. i felt weird being on a stretcher because i am able to walk, albeit with lots of oxygen, but still, i can walk.

the other test i’m waiting on is the right heart catheter test. they will go in through my neck and test/measure the pressure in my heart to see if my pulmonary hypertension has worsened. they are hoping this test will also help them raise my score. no idea when this will happen and i’m seriously still wanting coffee. it is too late for caffeine though of course. i’m a little anxious about this test. i’ve done it once before and it is a bit uncomfortable and they way they go in through my neck is a little jarring. i have my head turned but i can still see the activity around me on that side in my periphery. i also needed extra sedation last time which i hope doesn’t happen again. I’m hoping Mary will get here before i go and will come with me. she can use her laptop anywhere and it would be nice to have someone with me right up until i go back and right away when its done.  i know Chris wishes he were here. he tries to be with me for tests like this. but he’s gotta work as much as he can because my lungs are sure to come sooner than later.

so today has been a weird day. morning was a bit busy in here off and on. drs and making plans for my tests and all of that.

everyday it seems the big picture plan changes. one day its “no way you are going home right now” and the next its “maybe we’ll get you home tomorrow”. i don’t get my hopes up and i’m technically OK with staying here until i get my lungs. my breathing is still very bad and its a bit scary when i accidentally do a little too much. i use the non-rebreather mask at 15L just to walk a few steps to the toilet or to my bed. i’m on 8L with the high flow nasal cannula at rest but if i talk too much or move around too much my sats drop into the 80’s. so i don’t know why they are ok with me at 8 rather than 10.  they are the drs though so i will keep doing what i am supposed to and keep them up to date on my breathing.

i just realized the only walking i’ve done today was my 6 minute walk test. so even though i’m in heap big pain, i need to get out there and walk.

 

 

 

another day, same view

i woke up early today and i guess since i had to go to the bathroom right away i decided to get in my chair and order up my coffee.

so here i am feeling like it is later than it is. not by much though. just waiting on the drs. they are outside my door. they are gonna chat about me for a bit out there and then come in here and tell me i’m not going home soon like we were all hoping.

they have been lowering my oxygen to see how i do and i thought i was doing ‘ok’ but then i went to bathroom and fixed up my blankets in my chair and down went my sats. i was lightheaded and had dropped into the low 60’s just as one of the transplant drs came in.

apparently my chart said i might go home today. that isn’t happening now.

~~drs came and went~~

the transplant team had their meeting today where they discuss all their cases and they want to do some tests again to see if they can get my score up more. so they are pretty aggressively trying to get me those lungs.

~~and then~~

pysical therapy was just here and we did some exercise and a walk and some stairs. it was hard. it was upsetting. just when i was thinking i might be doing a little better i get hit over and over with the realization that i’m really not.

i realized i haven’t been thinking much about the surgery itself. just about what i want to do after, being able to breathe. its a little jarring when i find myself imagining getting the call. i almost feel like i should be really visualizing that more. like i could will it to happen sooner. yes, i know that is silly.

anyway at some point today there will be a special transport team taking me down to the pulmonary fuction test lab for breathing tests and then some time this week i have another heart cath test. the heart cath involves them going in through my neck to measure the pressure in my heart. they are doing this again to see if the pulmonary hypertension that seems to have started about a year ago has gotten worse. if my breathing tests are worse and the hypertension is as well these things will increase my score.

i’m trying not to do too much today aside from my walks and meals. my dear friend Carolyn is coming to do my hair which is awesome mostly because i haven’t seen her since she met me here Sunday with my bag. i mean, we all know i hate not having my dreads in but really looking forward to seeing her.

 

waiting, waiting, waiting

i wasn’t sure i would see any drs today seeing as it is Sunday and my breathing is the same as yesterday but they just came through.

they stopped my 4x a day glucose checks because my sugar has been fine and will stay that way without the steroids affecting it. they are giving me a break from the Lasix, a diuretic they’ve been giving me to fight off my fluid retention. it will be nice to not have to pee so much more. ah, the little things.

i lost a pound. so that is 9 total since i last weighed myself at home. i think that was last Friday.  the cardiac diet they have me on seems to really be working. i’m going to try and walk even more today. i’m sure i will also see physical therapy again this week and i plan to ask them about hand weights but i think they just have resistance bands.

i’ve asked about “snobby coffee” because i’m craving it and people have been offering to bring me some. the drs think its funny that i call it that and are totally cool with me having it.

yay!

i learned yesterday that i have pulmonary hypertension. i guess that is the cause of my fluid retention issue. i have no idea what it is and will be reading up a bit on it soon. i know it is very common for people with lung disease.

my LAS (lung allocation score) has gone up from 36 to 41.7. i don’t get any special priority because of being in the hospital. of course logically i am sure to have a shorter wait while here compared to being stable enough to be at home. i’m waiting on the stars to align and thats all i can do.

i think thats it.

i’m just trying to keep busy and not go crazy.

the little things are enormous in times like these

i warned you these blog updates might get repetitive and boring but i also explained that they help me clear my head and keep a good record and occupy a little extra time in these long days.

i’ve been having issues with night sweats. i get very clammy and gross but also quite cold. its very uncomfortable and very gross honestly. i had them turn down the temp in here yesterday and after sitting for awhile away from the blankets i started to feel better. then i got washed up and into fresh clothes and feel even better still. i found some bobby pins to put my hair up a bit and generally just feel much more comfortable.

i may get to go outside for a bit today. maybe. i’m going to have my lunch soon here and then ask about that. i know it is stupid hot out and i am ridiculously photosensitive but damn. i need fresh air. i have them keep my door and curtain shut so i can keep my music going and use the bathroom whenever i need to without having to wait for someone to come close the curtain. it also eliminates the feeling of living in a fish bowl. i mean i’m already the goth girl being walked like a dog three times a day. the staff is clearly talking about me. my nurse mentioned me “having a crazy experience” getting here. i had no idea what she was talking about. then one of the drs asked about my “boyfriend the chef”. i said i had a husband and he is a great cook but he is not a professional chef or known publicly for it or anything. i don’t know where this stuff is coming from. i don’t mind, like i’m not offended or anything i’m just confused but don’t want to ask about it. once Chris shows up tomorrow they will have concrete gossip for the remainder of my stay on the floor. he rarely has to even ask for directions to my room. they see him and just know he’s mine. they assume he is a biker. they often think he did all my tattoos. it is amusing. not just because neither of those things are remotely true but because of what is true. man i miss him. i can’t wait to finally see him. we didn’t have much alone time the week before all this went down so the distance is a little sharper.

its friday so things will be slow and boring. the drs came around like they do. i’ve seen the same one every day for a few days now and she said she’d be the one i see most for the next 2 weeks. nothing has really changed. my condition, my oxygen needs, my labs. the plan is the same. will be down to 20mg of prednisone tomorrow and once she comes through to see me and things are still the same she will put in the call to re activate my status on the waiting list. the only other thing they are doing is giving me Lasix to combat any fluid on my lungs. my days for the time being consist of taking walks and breathing on this machine.
~~i have a wiki link about said machine that i will link at the end of this. i’ve had a lot of people asking about it. it is not something that can go with me. needing it is the reason i cannot go home.~~

my breathing will either improve enough for me to get the oxygen i need with my home set up or it won’t and i will be here until i get the call. i might stay at this plateau i’ve been at at my current flow rate until that happens or maybe get down a little but not enough or even get worse. there is no way to know.

the wait here will be the same as home. the same stars have to align to get the right match. the biggest difference is that my score will be higher here than if i stabilized enough to go home. logically i will get the call much sooner if i am here in this state.

i’m basically OK with this because i am eager to get my life back and willing to do whatever i have to. suffer the boredom. be away from my fantastic husband. miss out on dates with my girl. worrying about my pup being alone more than usual and probably so confused about where i have gone. i might be stuck here on our anniversary again and Halloween and maybe even the rest of the holidays. who fucking knows. but i will stick it out the best i can and hope that call comes soon.

hell, i could suddenly start improving and be home next week or something.

my life is so completely up in the air it is hard to wrap my brain around sometimes.

if you have questions about any of this process i am happy to answer to the best of my ability. i don’t mind talking about it. it doesn’t upset me.

if you want to call, do call. obviously i may be unable to answer. routine in rare here, there is no way to say what a “good time to call” is.

if you want to video chat, i’m game. just have to work out whatever method is best for us.

if you want to visit that would be lovely. just give me a heads up if possible. i get myself cleaned up and dressed as soon as i’ve seen the drs in the morning. if i do it sooner i run the risk of not seeing them unless they happen to be able to come around again.

if you read this far i hope it wasn’t too repetitive. i’ll start re-reading previous posts to be sure i’m not just saying the exact same shit every single day.

~~~here is that wiki link about this machine keeping me alive. it is actually somewhat new technology. still a lot of testing going on to really understand the benefits and risks and uses.

https://en.wikipedia.org/wiki/Heated_humidified_high-flow_therapy

 

 

 

a lack of lungs, the saga continues

it is thursday. i’ve been here at the hospital since sunday evening. this particular trip started at my local ER. i should have called 911 but my husband got me there.

only a few steps had my oxygen saturation dropping to the low 50’s. for those who have no idea what that means, healthy people are usually at 95 or higher. i try to keep my oxygen up enough to stay above 90.

when your oxygen level is that low, you literally feel like you are drowning. it is painful. it is scary. the fear and anxiety make it all worse. all you can do is sit and try to take big breaths. just sit and try to relax your body as much as you can and take in all the air you can until the pain subsides.

the local ER did their thing and eventually i was transferred here to U of M where i am listed for my double lung transplant. due to my steroids being increased so much to try and improve my breathing, my status on the list is on hold. they started tapering it down today and plan to have me relisted by Saturday. the steroids aren’t helping and i can’t get my lungs if i’m not active on the list. my score will be higher and that will shorten my wait.

the real thing keeping me here is my oxygen needs. i simply need too much for what can be provided at home. obviously it has improved somewhat since Sunday but not for the last couple days. i’ve hit a plateau and it may not improve. i may be here waiting for my lungs.

it will suck. it could be hours, days, weeks, months. but. it will surely be sooner than if i were home and stable with a lower score.

as much as it will suck, i am OK with this plan. if that is how things go. i feel like this will have me up and back to living so much sooner and in plenty of time to see my baby girl get married. no oxygen tanks in tow. no tubing ruining photos on such a special day.

so i’m optimistic but trying to just go with it. i’m on this ride so i’m going to just buckle up and ride.

i’ll keep updating here. i might blog every day and it might be boring and repetitive. it might help me get through the days. i’m trying to keep myself occupied as much as i can. i’m trying to be as productive as i can.

i can have visitors. i don’t need anything. my husband says he is coming saturday and he will bring any other little things i need along with clean clothes.

i’m a strict diet so i won’t be asking you to smuggle in ben and jerry’s  or some shit. well, a snobby coffee once in awhile might be nice. i just have to let them know about it for my dietitian.

my “job” in all this is to walk as much as i can and stay active and strong so i can recover like a pro when i get those lungs.

Despite your comforting sounds

I’m really struggling with my illness. With the day to day of my serious limitations. With the pain of being unable to breathe.

It’s been especially bad, progressively bad, the last couple weeks. I’m avoiding a call to the Dr on the hope that it’s just a side effect of tapering my prednisone burst too fast. We’ve dealt with that before. I’m ok if I just rest. Try not to move too fast when I get up.

It’s no way to live and it hurts my chances of a speedy recovery if I got the call right now. But. I’m not so out of shape that I am overly concerned about that. My body is strong. I’m confident that I will be able to get up and walk when the time comes. When I can breathe.

While I wait though, while I struggle to catch my breath and the pain makes me cry… I’m fighting to keep fighting, but it’s so hard, it’s so very hard. I feel like I’m losing the battle and no one understands. How could they? They can’t feel the pain of not being able to breathe. The feeling of drowning on dry land. The sheer terror.

It’s lonely here in my fear. When I’m gasping for air the only thing that can save me is finally being able to breathe. Out of guilt I will try to hide my pain. I will pretend I’m ok even if I’m not.

I don’t care how depressing this is. No, that’s not true, I do care, I do feel bad, I should keep this to myself and I’m sorry I’m not. I’m sorry for the honesty that might upset you.

I just feel compelled to be honest. Maybe I’m hoping that the sharing of pain is the halving of pain.

‘i will let this monument represent a moment of my life’

its been about 3 months since my last post.

i’ve been on the transplant list about 7 months. i know that isn’t a long time but i’m getting quite impatient. i’m less and less worried about the surgery as i find myself getting stronger every day. despite needing a considerable amount of oxygen to exercise. i’m more concerned about how long i will have to keep waiting.  there is a certain amount of guilt along with this impatience but i fight that off the best i can.

needing so much oxygen to go out and do anything and the need to take so many tanks has become stressful. because of the fact that i need it while at rest i have to take even more oxygen with me and its a dangerous game of chance when i’m not aware of how long i’ll be out. i think that for the majority of time that i have been sick i have normally been able to sit in room air while at rest. that made it very easy to conserve oxygen while i was out. now i sometimes can’t even get away with turning down below 6L. i will start to cough and have to turn it back up. this creates a very constant reminder of how sick i am.

so i am eager to get new lungs and get back to life. life without the ball and chain of oxygen tanks and 50 feet of tubing all over the house. life without the pain of being short of breath. which is a new thing, the pain that is. sometimes even with high amounts of oxygen for exercise and cleaning i will have to stop and rest. for quite awhile. struggling to catch my breath. pain in my chest and panic in my brain.

for the most part i have done OK at taking care of myself. i try so hard to follow my diet and i exercise every day. except for the weekends when i tend to binge and either do a half assed workout or not at all. every bad habit surfaces during the laziness of the weekend. i did better this past weekend and i need to do even better from now on. i want to lose at least 10lbs by the 28th when i see my transplant dr for my 3 month follow up. according to my scale i have lost body fat but went from losing a lb each day to gaining a lb each day the last 2 days.

so i have to try harder. i have to work harder. i exercise more and more each day. i went from 200 crunches a day to 375. i use 5lb ankle weights instead of just 1lb. i’m going to add more poses from my DDPYoga program today. i’m pushing myself as much as my oxygen will allow.

every time i fall i get back up. i will just have to keep getting back up until i have disciplined myself not to fall anymore. or at least not fall so far.