HAPPY KIDNEYVERSARY!

On September 30, 2021, at IU Health in Indianapolis, Indiana, Hoosierville, USA, The Spinster Stitcher began her new life thanks to her Angel, a dream team of medical professionals, a caregiving squad of the other half of her heart, and the love and support of her beloved Dearies from both near and far.

It has been a month of profound blessings, challenges, and life lessons, and although she has not always acquitted herself with grace, love, humility, and deep deep gratitude, in her quietest moments, she has been brought to her knees with the sheer miracle of it all.

One month.

The prayer continues to be the same, but with a little more urgency as the fog of surgery starts to lift and the business of recovery continues: Please help me to be worthy of this gift and to live a life that honors all those who got me here.

Happy Kidneyversary!

 Today was a good day at the clinic.  My creatinine level is the best it's been since surgery, all of my other numbers are behaving themselves, and my incision is healing faster and better than anybody could have predicted.

This journey is definitely that...a journey. With lots of ups and downs and twisty turns, a few pit stops, some car sickness, more than a few meltdowns, and nothing but pure joy and beautiful views flying by.

The weekend will be full of things like naps and laundry and hopefully some stitching and damn good coffee, and I'll continue to celebrate each and every milestone!

Humility and gratitude...who knew how far they could take me!

 

IN WHICH THE SPINSTER RESTS

 

Steroids are absolutely kicking my heiney today, Dearies, but I know they are my best ally right now, so I am gutting through it. I had some of the worst heartburn of my life through the night and then some rather queasy hours this morning, but that was probably the result of a poor dinner choice (gyros) than it was the medicine, so I have nothing to complain about.

In a few minutes, I will take my morning bath in the sink, don clean clothes, and go for my little walk down to the lobby. If it's not too cold, I might sit with my face in the sun on the little patio overlooking the canal and try to feel like a human person for a minute.

Cheryl is gathering needlepoint for me at CS2 today, so hopefully I will be stitching up a storm again in no time. I just can't seem to cross stitch at the moment...can't concentrate to see/count, and I am a bit shaky from some of the new meds, so I am hoping at a little tent stitch on canvas will get me going again. Stay tuned!

I think it might be Futzingday, so I will bid you all a happy one! Do something futzy and come tell me all about it!

IN WHICH WE HAVE A VERY GOOD VISIT WITH DR GOGGINS, INDEED

All good news today, Dearies!

These massive doses of steroids seem to be doing the trick, and the creatinine level is back down to 1.5 from a high of 2.7 on Friday! And, the incision is healing beautifully and might only require another three to four weeks of wound vac, as opposed to four to six! And, there are no clots in my legs causing swelling and shortness of breath...that's probably the steroids and me leaving my feet down too much! And, I can stop worrying about a return of the disease that got me here, since it usually gets "zapped" by all of these meds and even if it does return, it would progress at about the same rate as it did with my old kidneys...which was pretty slow!

Dr G just gets me, and explained everything according to how he knows my brain works. God bless the other docs that see me in the clinic...they are very excellent, but they don't know me or my case very well, so deliver data very differently. Plus...there is just NO EFFING WAY Goggins will let me fail. We're family now. (His words...that made me want to just kiss his face repeatedly, and I would have if Cheryl wouldn't have been there supervising.)

Speaking of...Cheryl has returned north for a few days rest and will be back on duty at the end of this week and the beginning of next, and then Rich will return, then Denise again. If I live to be a thousand years old, I will never adequately find a way to pay them back for all they've done and continue to do for me.

It's time for a nap, I think. Thank you for all of your lovely comments about my new hair. Tim Sizemore did not disappoint in any way whatsoever. In addition to being one of the most handsome men I have ever laid eyes on, he was absolutely one of the kindest, loveliest people I've ever met. Very interesting and wonderful and just so...gentle and professional. It really was a perfect experience.

Thanks for riding the kidney coaster with me, Dearies! I promise lots of twists and turns, but I've got my arms up, head thrown back, a big smile on my face, and I'm going to enjoy every minute of it!

Next stop...central line removal!

WoooooHooooo!

WOW. WEEEEEEEEE.

The Columbia Club...downtown Indianapolis on Monument Circle. Salon one2one. Proprietor Tim Sizemore.

Best. Haircut. In. The. Most. Beautiful. Building. 

Ever.

AND NOW...CS4

A bit of drama yesterday afternoon here at the Recovery Hotel.

I was sitting on the bed talking on the phone and had just opened the drapes to get a little light in when a man popped up, started to try to get the windows open, and then kinda crept away...with his pants off. Cheryl was on her phone in the living area, so when he crossed in front of that window, she hollered bloody murder and took off running down the hallway to get help from the front desk.

I, of course, remained totally calm and gathered myself together, got my scooter/walker, donned proper footwear, and carefully made my way to the front desk as well.

OK.

So maybe that wasn't quite accurate. I broke out into a cold sweat of panic, stood up to get the hell out of there, and saw an entire encampment of belongings under the big bushes in front of the window...about a foot and a half from where I had been sleeping for the last almost month.

And then I started bawling and snotting all over my Woman Within sleep shirt, because I realized just how freaking vulnerable and helpless I've been, and that the strong, capable, fearless, feisty woman that would have hollered at the guy to "Pull those britches up, young man!" was gone, and that the current version of Yours Truly is barely able to bathe herself....let alone fight off an intruder.

Long story short...after a few minutes of drama and several other concerned guests gathering in the parking lot, the manager took one look at my face and said "How about we get you into a different room?" and three hours later, Cheryl had managed to move the seven cartloads of crap out of the old room and into the new room.

The old room was just that. Old. And in pretty lousy repair. And pretty much the bain of my existence since I stepped foot into the darn thing. I made such a fuss about it and flipped my wig over it so many times, that I never took into account that poor Rich had selected it because he probably thought I would appreciate an accessible bathroom in which I could sit in a shower to wash my hair, or the fact that it was on the first floor and a nice simple walk down a hall to the lobby, or....

But no.

I had to act like a bitchy little spoiled princess who thought he was just too darn lazy to find a "perfect place for me to recover". I had visions of a high floor view with newspapers and breakfast delivered to the door and a Starbucks in the lobby. (That would have been a different Marriott entirely, and probably would have blown the budget in a week and a half, whereas this property houses lots of IU patients and their families and is .8 miles from the hospital entrance).

Anywhoose. 

The new room is simply perfect. Third floor, so no more worries about uninvited roommates, completely renovated and clean and functional, and they even went out and bought a hand-held shower head and installed it for me this morning so I can still sit on the side of the tub to wash my hair. (This is not an accessible room).

I am just so very happy and peaceful now that I had the best night's sleep since being out of the hospital, and I went to bed grateful that everything is just working out the way it's supposed to when I get the heck out of the way and surrender my incessant need to be the boss of everything.

Today has already been a good day. I had an excellent sink bath, got dressed INCLUDING a bra, put on a little eye makeup, and went for steroids. Now we're resting a bit, and then I am going to get my hair cut downtown by a guy named Tim Sizemore, who is a high school buddy of one of my clinic nurses who called in a favor for me! (If he is anywhere near as handsome as his pictures on the internets, I might pull something batting my eyelashes at him, so if you would, please say an extra prayer that I don't make a complete foolish jackass of myself right there in front of Cheryl and everybody!)

Milestones, Dearies! We're celebrating them like crazy around here!

Keep those happy thoughts for tomorrow! I'll update you as soon as I can on whether or not we've turned this little rejection wagon around!

IN WHICH WE CONCENTRATE ON ALL THAT IS POSITIVE

 My current caregiver is Cheryl. We have known each other for about 35 years now, and she apparently knows me well enough to crawl inside my tiny little brain and know exactly what's going to fix the Freak Show in there.

Yesterday we went to the hospital for my first dose of steroids and then we went to Target.

Target.

I haven't been inside a Target since sometime in 2018. December, I think. But I got into a scooter and tooled around that store like I owned the place! I found a super soft and comfy lounge/sweat/pajama set on sale and grabbed a few other necessities and away we went.

To Panera.

Inside.

Inside a Panera.

Just like people do in normal life!

Gyros for dinner meant more food for Yours Truly than I have had in quite some time, so I was a bit uncomfortable...but very happy to have had those milestones.

Today we went for steroids and then drove to Castleton and the Keystone at the Crossings area. We started with mani/pedis at a lovely spot and just had a delicious lunch at Harry and Izzy's....this time much lighter in the form of a wonderful salad.

There was, however, dessert. We may or may not have had a few bites of Woodbridge Reserve bread pudding with salted caramel ice cream:

Cheryl is shopping in the Nordstrom Rack while I rest a bit here in her van and visit with you.

So another day of milestones and one day closer to getting good results the rejection is halted and I can have some more milestones!

What's new with you? Come tell me all about it!

A DAY OF HIGH HIGHS AND LOW LOWS

Well, Dearies...the day didn't go quite as planned.

It looks like I am in the early stages of rejection. Numbers have given my team cause for concern, but there is a plan in place to administer high dose IV steroids starting tomorrow morning to see of we can stop the rejection from progressing further.

On a much brighter note, during an ultrasound I got to hear the kidney's "heartbeat", and I commented that this must be what it feels like when a mom hears her baby for the first time.

I'm OK. Just a little shell-shocked and very very tired. My faith in my team remains unshaken, and I know if anybody can figure it out...they can. They assure me that this does happen, and that in most cases the steroids do the trick, and I will be back to the business of recovery quickly.

Please keep the happy thoughts and bear with me while I navigate these steroids!

FRIDAY

First TOPA...the transplant outpatient clinic upstairs, and now SOPA...the downstairs surgery outpatient clinic. They'll look at labs, change the wound dressing, and give me a good look-see, and it's back to the hotel for the weekend!

Happy Friday, Dearies! What's on your agenda for the day?

RAFFLE WINNERS...NEED SOME INFO PLEASE

Chris Wasson

Cherie Moore

Pam Nuttall

Could you three ladies please send your mailing address to: siggyscloset@gmail.com?

Thank you!

Dearies, if you participated in the raffle, please bear with me. I have everything here with me to prepare the shipments, and I am hoping to be able to get these things out to you this afternoon.

I sincerely apologize for the ridiculous delay, and hope that you understand the circumstances that caused it!

Don't quote me on this, but I think I am going to be able to fulfill everybody's wish with this, and if I don't have what you asked for, perhaps Aunt Chrissy will be able to fulfill from her shop.

Please stand by and thank you so very much for your patience!

AND THEN WE ENTERED...THE TWILIGHT ZONE

I lost weight.

I lost weight and was thrilled to do so until the Nurse Practitioner told me this was actually a BAD thing, and that for now I need to concentrate on protein protein protein and just letting everything heal.

Losing weight is a BAD thing.

Hmmmmmm. Guess I should enjoy that fact while I can, because I'm pretty sure it won't be a minute before Goggins has me tied to the treadmill while he hollers "Pick it up, Chubby! You've got a ton to lose and a new kidney to help you do it!"

For now, though....breakfast!

The wound vac dressing change was brutal but aided by a couple of pain meds, so as soon as I eat it will be time for a nap. They've got me in the upstairs clinic getting some fluids, so methinks I'll throw some HGTV on the tube and drift away.

Happy Tuesday, Dearies!  

IN WHICH THE SPINSTER DISCOVERS THAT SHE IS NOT IN CHARGE OF THIS WHATSOEVER

Phooey.

For as wonderful as I felt on Friday...the wheels have come off the recovery bus entirely.

Energy level is zero. Mood is...ugh.  And pain is just...a pain.

But, as per usual, I am learning a lot about my crazypants self through this. I am such a linear thinker, that a non-linear situation just throws me for a loop. And a kidney transplant is the very definition of a non-linear situation.

When I came down in August, I had that big life-changing epiphany that there would be no place for ego in this little exercise, and that the best way for me to get through it would be to surrender control. That doesn't mean surrendering responsibility....no ma'am. It simply means that this recovery is not going to progress according to any plan that I can devise, but rather according to how it is supposed to.

I was initially going to describe it as one step forward and six steps back, but the truth is that the steps are ALL forward...sometimes, though, forward isn't in the direction I think it is.

I had the entire place to myself last night. Denise and Jeff headed back to Lima in the afternoon, and Rich will be here later today. I have to confess....being quiet and here by myself was a treat. 

So today I'm just going to rest. In a little bit I will get up and perform my morning routine of bathing and getting into nice clean clothes (thanks to Denise doing my laundry for me), and I will eat carefully, and drink my five or six liters of fluid. 

I'm using trips back and forth to the ice machine as a way to get some steps in, and sitting up in different positions as much as I can to try to use all of those core muscles that are mending.

My goal is to get stitching again, because I know that nothing else will fix this head of mine. I'm contemplating which project to pick up and which to tuck into my clinic bag...stay tuned for that one. I could, though, use some advice. How do you chart something custom to add to a piece? I have decided that I want to chart "September 30, 2021" in a really cool font as the space-filler on my Pretty Pumpkin piece, but I don't have a clue how to do this. 

Thoughts?

So, happy Monday to one and all! I hope you had a wonderful weekend, and that the days ahead are full of fun and frolic for you and yours! Come tell me all about it!

SATURDAY SPINSTER RECOVERY BLISS

They came to service the room yesterday while I was waiting for Denise and Jeff, so I took the opportunity to sit in the "Great Room". 

It's basically the lobby of the hotel, but there are big comfy chairs there and a fireplace and TeeVee, and a patio area overlooking the canal.

This will be the perfect stitchy spot once I get my needle and thread back about me.

We sat up late talking...just like the old days when I was in school and Denise and Jeff would come for the weekend. Lots of laughs and chuckles and good gossip about the goings on in Lima. All in all, a perfect evening.

It occurred to me as I was brushing my teeth before bed that I had been up since 5:30, was very active, and had not had a nap! Probably the best I've felt in quite some time!

And then it dawned on me what was the cause of all of this energy and well-being:

Aaaaahhhhh....bliss, thy name is Starbucks French Roast.

I won't overdo it, I promise, but suffice it to say that I am up at 7:30 on a Saturday morning taking those first few precious sips, and all is right with the world once again. According to my docs, coffee is perfectly fine in moderation (in my case that will mean one 3/4 full sippy cup per day) as long as I chase each cup with plenty of water.

There are no restrictions on me diet-wise, but I am being super careful to make good choices and keep the portions under control. I am not trying to lose weight right now, per se, but rather concentrating on getting good nutrition to heal. I can have anything I want with the exception of grapefruit, pomegranate, and starfruit...three things that I don't think I really indulged in before so it should be easy.

I have some back issues of the NYTimes to play with until the day gets going, so methinks I might lounge a bit with them and my damn good for a bit.

What's on your agenda for the day? Come tell me all about it!

 

TWO WEEKS

Two weeks ago today I was given a new life.

There have been a lot of ups and downs, twists and turns, successes and failures, and good and bad. I've laughed and cried and raged and sobbed and begged and fell apart and amazed myself, been ashamed of myself, tried to fix myself, and prayed for humility and more gratitude.

Rich has taken the brunt of some of the ugliest, meanest, nastiest ugliness that I could throw at him, and he's taken it all with love and patience and very very good humor.  Even though we're not married, I guess this is what "in sickness and in health" really means. My God...I love this man.

There is pain and discomfort and more questions and worries and fears and vulnerability than I could have ever imagined, but there is also hope and excitement and awe over the generosity and love of my Angel and his family. Just when I think I can't do it...there's a little milestone like going to clinic and coming back to the hotel rather than being admitted, or the Nurse Practitioner taking pity on me and postponing the dressing change until tomorrow.

I actually washed my hair last night by sitting in the shower and leaning my head over and doing my very best to just...enjoy the bliss of a clean head. I walked into the hospital from the parking garage and then walked again when we made it back here....down a very very long hallway.

Today I putzed...tidied the little kitchen, organized the fridge, paid bills, and stood in front of the sink and washed my face and brushed my teeth. I opened mail and took my vitals and sat with Rich for a few episodes of Seinfeld.

Tomorrow I will go back to clinic and will have dressing changes and labs and get some fluids and some iron and Rich will hand me off to Denise for the weekend and there will be more of the same.

I expected to be Mary Poppins when I woke up...Perfectly Perfect in every way and a kind and loving and easy patient. I thought I would be quiet and peaceful and happy and so overcome with gratitude that I would sail through recovery and the world would marvel at what a trooper I was.

There's time for that, I see now. I guess the plan was for me to come out kicking and screaming and punching all the wrong people so that I could be made aware that I'm still me with all of my mess...now, though, I have been given time to clean that mess up.

BRACE YOURSELVES

Today is Wednesday, October 13, 2021.

My last cup of damn good was on Wednesday, September 29, 2021.

THAT'S FOURTEEN DAYS, DEARIES! 

FOURTEEN!

Thanks to an amazon order that should be here tomorrow, God willing, and thanks to a DoorDash Meier grocery delivery, I should have a new little mini Keuring machine fired up and brewing within minutes, and then I'm going to make a big fat sippy cup full, and slurp to my heart's content.

I've been blaming my head-spinning hatefullness (of which my JB has taken the full ugly brunt) on meds, fear, pain, and general discomfort, but I'm seriously thinking that no damn good has completely changed me into an awful, awful beast.

Today I'm going to try to find a salon where I might be able to go for a hair wash and maybe even a hair cut. The dry shampoo has built up to a point that it's actually adding weight to the scale, and God knows I've got enough of that without any help.

I'll close for now, Dearies. I am presently in the clinic awaiting lab results, a nice big dose of pain meds, and then a dressing change. I managed to wear actual clothes today, so I'm feeling sassy and ready for anything Dr Goggins and the team have to throw at me, so let's go!

A LITTLE TOUR OF CS3

There is a shower/WC, but I figure you know what those look like. Unfortunately, all of my bathing has been at the sink, but the moment I am cleared to do so, I'm getting into that shower and not coming out until they haul me out.

Time for a nap, I think. I've been up a few times for snacks and a little visiting with JB, but my stamina is not quite back yet.

Happy Tuesday, Dearies!

YUP...YOU GUESS IT...BACK IN AGAIN!

I'm learning very quickly that nothing about this entire adventure is linear or within my control. 

Today I got up and came to clinic and there are some things in my labs that have the team concerned enough to admit me and see if we can straighten them out overnight.

They are aggressively pre-emptive here, and rather than take a wait and see approach, they hit it head on with everything they've got to right the spinster, as it were.

I think the term "clinic" can be confusing. Under normal circumstances, you return to the hospital after transplant a few times a week so they can lay eyes on you, make sure everything looks good blood chemistry-wise, administer fluids or extra meds if needed, check your incision (and change dressings), and generally make sure you and your new kidney are getting along.

I'll get there eventually, I'm sure. Just a few little things here and there that might need tweaking, but before I know it the visits will be fewer and fewer and I can head back to CS2 and just come down periodically.

Denise is on her way back to Lima, and Rich will be back tomorrow, so I have a quiet night of snoozing, fluids, and TV ahead. Then tomorrow we'll see what the day brings.

I could use a recommendation, though, for anybody who knows this area. For a period of time, my little motley crew of caregivers are going to leave me to my own devices, and I need a ride to clinic while they're all gone. I'm self-sufficient in the hotel, but I can't drive yet. It will amount to about four rides a week for two weeks.

Has anybody used a non-emergency medical transport company here in Indianapolis before?

I suppose that's my update for now, Dearies! You'll be happy to know that I brought my GoBag this time, so I have clean clothes and charging cords and everything I need to a lovely evening. No stitching, but with hemoglobin at 6.6 and lots of pain meds on board...I couldn't if I wanted to!

Are you well, dear friends? What's been blowing your skirt up lately? Come tell me all about it!

SHIFT CHANGE

Rich went back up to Granger last night, and my friend Denise from Lima took the handoff at the hospital and got me back here to the hotel, bathed, a good head scrub with a shampoo cap, and safely tucked in with my new little Gizmo doing its thing on the bedside.

Now, please forgive me, but I have been very very active today and need to grab a pain pill and snooze for a bit!

Clinic again tomorrow, and you can be darn sure I'll remember my go-bag and lots of pain meds...I am not looking forward to this dressing change!

AND ANOTHER ROOM

 

After an eight hour visit to the TOPA clinic, I was re-admitted to an inpatient room again. The incision was re-opened by Dr Lutz, my surgeon, and today a wound vac will be installed for better healing. I was surprised to learn that this happens in about 70% of the cases, and that it wasn't something I did.

They told me to take a go-bag to clinic in the event of admission, but for the first time I did not obey, and I'm dearly paying for it. I am here in legging capris and a t-shirt....no toiletries, no charging cables, no nothing! 

Next time I'll listen,

This is the best of all the rooms I've been in so far, and if it were up to me, I'd stay here for the duration, but alas, staffing shortages make that impossible. I will have a consult later, though, to get a home health care nurse for the hotel...especially since this wound vac will need tending to when I'm not in clinic.

Otherwise, all is well. I'm waiting for a Dr Gogging team visit to update me on numbers and the plan for today. I'm learning that the plan is very fluid and very likely to chamge!

Happy Friday,Dearies!

SO MANY DIFFERENT BEDS...

This morning's adventure brings us to my very first TOPA clinic. This is where I will come two to three times a week at the heiney crack of dawn to get poked, prodded, tested, and looked at by the team to make sure that all is well.

At the moment my biggest concern is the incision and the pain of it, but I have to remember that this was a little bit more intense than a brow wax. Abdominal muscles do so much for us, and considering the size of my girthitude, I'm sure that fat being cut through hurts too.

I managed to get completely organized last night and put clothes away and get my stitchy things together and put things in their places. Then I took what amounted to a sink bath with some special no-rinse foamy soap and did a good dry shampoo scrub. I can't take a shower until the central line comes out, and that might be another week or so (yikes!), but maintaining good hygene is critical.

Oh wait.

TMI.

Sorry about that.

Denise is coming for the weekend to give my beloved JB a break. I swear, this man is doing things he never thought himself capable of doing, but I'm worried about what this stress is doing to him. He can barely move because of a sore back, and walking any distance is as hard on him as it is on me, but he has the added burden of pushing me in a wheelchair!

Pray for him, please.

I'll close for now. My eyes are getting a bit heavy.

God bless and keep you all, Dearies! My team here knows almost all of you by name because I can't stop talking about what you all have done for me. 

Have fun today and come tell me all about it!

NEW DIGS

Sorry for the lack of updates, Dearies, but the last few days have been a bit overwhelming. I was discharged yesterday, and with that came a lot of appointments with various people who tried to walk me through my new life, and to put it mildly...I am overwhelmed.

Physically, the pain is keeping me humble. The incision is about a foot and a half long and extends from my lower right side on a diagonal across my tummy and then concludes south of my belly button in the far nether regions that I cannot see...thank goodness.

I confess to being nervous, scared, sad, frustrated, and a little impatient at times, but I'm told that this is all to be expected in these initial days of healing. I've taken to chanting a mantra..."I was blessed with a new kidney and have been given a new life" to keep myself from wallowing, because the truth of the matter is that regardless of how rough this might be...it's a miracle of love that I accept gratefully.

I will hopefully learn more about my angel donor in the coming months. At the moment, all I know is that his gift of his kidneys saved two of us last week, and no matter anything else about him...that is extraordinary.

Your love, support, and encouragement got me here. I am so happy to tell you that when we discussed all of the medications I will be on and their connected costs, I was able to take that in without panic thanks to you. So, you too, literally gave me a new life. For that and so many other things, I thank you.

My afternoon pain med is going to work its magic in a moment, so I'll close for now. I hope this finds you well and happy and with flying needles! I can't wait to get mine back in hand!

NO WORDS...

 Will be in ICU one more day, then back to med/surg floor tomorrow, I think. Just don't have any words right now, Dearies, other than...I.Am.Grateful.

Love, hugs, and kisses to each and every one of you for your healing thoughts and prayers! They are sustaining me!

I'll try to post as I can!

Love, love, love to all!