Wednesday, November 23, 2011

Transplant Hospital Stay Recap

Transplant recap.

At a little before noon on Thursday the 3rd my phone rang and I saw it was the SF area code and my gut reaction was “what in the hell do they want now.” It was Jill, one of the pre transplant nurses to tell me that had a donor match for me. She had a few things to tell me and our call (oops, my bad) got dropped so she returned my call on my home phone. In the mean time I was trying to rally my family for the trip down. I called Bill at work to tell him and wound up screaming at him because he couldn’t hear me over the mill noise. I located my dad even and got him headed down. My mom, aunt and uncle all car pooled, and as it turned out, Jill called me back and talked long enough that I was able to just wait a few minutes for Bill to ride with Greg and I. I actually had to tell her she had called me on the land line and if she wanted me driving I’d have to GO.

I’m not sure how to say I was feeling at the moment. Greg and I had a little cry. I think the anticipation and worry kinda all hits you at once. Up until now it had just been something that was going to happen, eventually. Waiting to get listed, waiting for a match. You can’t answer the question “SO when are you having that transplant?” So the answer is, still waiting.
We made it to SF in 4 hours arriving at just about 4:30, Bill dropped me at the door and went to park while I went to check into admissions. We sat there for an hour after I was admitted. It pretty much let everyone who had gotten out behind us catch up. I finally got a room assignment and came up to the 10th floor. Gown, IV placed (after 5 tries), x-ray, and, you guessed it….more waiting. My family arrived and we all chatted and yapped to pass the time. We were given a tentative start time of 10pm.

They wheeled me down to the OR at about 9ish and my family was given directions to the best place to wait and when updates would be given….. Blah blah blah. They were told to expect at least a 10 hour surgery maybe more like 16 hours. Just be prepared for a long haul but that they would receive update calls throughout the surgery. My mom, Bill, Greg, my dad, auntie, uncle, bills parents, and my best friends were there waiting it out. I can’t begin to explain how much that means to me.

I was given something to “relax me” and woke up after surgery. What I do know is the first cut was made at 11:40pm after the donor lungs arrived and were double checked visually to be sure they where a good match. They wheeled me into the ICC unit on the 10th floor at 7:20am on Friday the 4th.

Since I’ve never been one to do anything “by the book” I woke up after surgery, intubated of course, but able to sign or write notes. My husband came in to see me and I guess I was scrubbing on his hand trying to write a note. I remember him saying, “Are you trying to tell me you love me?” And me shaking my head adamantly NO. They quickly found me paper, shocked that I could write coherently when not even able to open my eyes. Something that amazed every dr, therapist and nurse who would meet me over the next 7 days. When intubated they normally give you enough drugs to be comfortable and quiet. Yeah, well not so much with me. I was in quivering pain in my upper back and nothing was covering it. I would write notes when people couldn’t “get” my signs. They removed my tube on Sunday and it was so freeing.

I can’t say I was overwhelmed with the new lungs. For one my back was killing me. Rolling and pulling during surgery had thrown out my upper back. It throbbed, it spasmed, and it clinched. I actually felt like I was breathing worse than before the transplant. My chest was tight and I didn’t feel like I could take a deep breath. I was so disappointed with the way I felt. Every person I talked to who had been through transplant had said “oh wait until you take that first breath after transplant, it will feel so GREAT!”. Well I felt like was hell.

After 12 to 15 hours of being off the ventilator my surgeon came in and talked about putting me back on the ventilator. At that point it seemed such a HUGE step back that I just cried. They were even talking a possible tracheotomy. I was told my new lungs needed more rest. That they had come with a little party prize in the form of mild pneumonia and my body wasn’t happy. They didn’t say “rejection” to me, but they did to my family. Rejection, chance of death….. All those things we had dreaded. I cried while they knocked me out to put me back on the ventilator.

Again I woke up unable to talk, and still in pain. STILL IN PAIN. You have no idea. This was not, owowowow I have a huge cut. This was OMG someone is stabbing hot knives between my shoulder blades and the only thing I can do is lay on my back.

Tuesday night I was sitting up and felt a drip down my back. Bill got my nurse and sure enough, my epidural line was leaking. They made calls… nothing happened that night.

Wednesday morning they came and assessed that my epidural had in fact migrated out and was less than 1/2mm under my skin. They would come back after my bronch and after they removed the ventilator to replace it. The anesthesiologist said he couldn’t imagine having this surgery at all, let alone with an epidural that had migrated out.

Wednesday afternoon came and they were ready to take me off the ventilator again. Finally at like 3pm it came out for what was the last time. I was SOOO over it by then, but my bronchoscopes where starting to look like healthy lungs. I remember looking up at one while I was intubated and just seeing the insides on my lungs looking like white sloughing snake skin. Not mucus either. Just white and grey and dead looking. Wednesday morning my scope looked good, PINK! No mucus still, I became listed as an A-typical cystic. Yeah D’uh we know.

On Thursday I had another scope, this would be daily for the next 3 days so I’ll recap them all here. PINK! CLEAR! Healing nicely. No signs of ANYTHING abnormal, and also usually not even enough mucus to have the lab run cultures, the Dr’s where having to add saline to fool the lab into thinking they had enough to grow cultures.

Thursday at some point (night and day were all running together at this point) they came and removed one of the extra large drain tubes draining fluid from around my left lung. There were two. We were jokingly calling them 2” PVC pipe, a joke totally lost on city people. They were actually closer to ½” rigid tubes. Later that day they came back and removed the second half of the Y drain in the left. That actually alleviated some of the internal pressure I was feeling. It did nothing for my back (as we were hoping) or for the numbness across my chest.
I also went for a short walk again. Walking was a real event. Tubes, bags, IV poles, nurses, support people…..
I finally sent Bill home too. He just needed to get back home and start getting our stuff done. I was stable now, and there was a chance I wouldn’t leave the ICC but would go home straight from there, so no reason to hang for me to go to the floor.

Friday I went for a little walk and had a scope. I also got orders to move to the floor. YEAH! So they had to have a PICC line installed, like what I have at home. Once that was in and working they could remove the ART, artirial; think permanent blood gas if you have ever had one, line out of my wrist. This line was a HUGE pain. It caused machines to beep constantly. If I shifted my arm a centimeter it would set off alarms. They could also remove the large central IV line from my neck. HUGE blessings. And then we waited. No bed. At about 9 pm I gave up hoping to be moved and settled into bed for the night.

Saturday morning about 3am I started to spike a fever. It came and went all morning until about 11am. Another Bronch and the decision not to do another for a few days to allow my lungs to rest as the constant irritation was not helping. Was also agreed on that a medication that I had initially told them I had troubles with, I INDEED have troubles with and to discontinue it. A lecture over lunch about calorie intake and feeding my healing body. Then news. A BED. I was on the move to the floor. I took a quick walk in the ICC then we moved me out to the floor with all my remaining lines tubes and bags.
The move to the floor was uneventful but super tiring for me as those fevers had really drug me down. I was excited to get into a bed wider than a toothpick.
Saturday they also came and removed the final two big lung drain lines, leaving me with two little fine (about the size of fish tank air line) drains, one on each side. With those out they took out my epidural which also meant they could remove the catheter. YEAH! I had NO lines left except for the two drains, IV and 02..

Saturday night was horrible. The pain was awful and sleep was not happening.

I had a breakdown on Sunday. I was so tired again. “You look GREAT!” Thanks…weep weep weep. It was decided PAIN control WOULD be found. I was hesitant to start a bunch of narcotics and what I needed, a muscle relaxer, was impossible to give with the surgery. They don’t want you to not breath.

Monday morning I woke up in horrible pain at 5am. My bed had gone flat in the night. That SO helped. Pain control had started to be effective and we finally came up with a good plan as long as the bed would stay inflated all night. Instructions were learned by us so we could fix it ourselves. Monday after breakfast I get surprise news that I’m having a bronch. No lunch for me. Yeah. Not.

Again, bronch was clear, nothing to suck up and I wouldn’t be having another one until they do the one with the biopsy after I’m released. Best news all day. I was even lucid and interested (oh right and numb enough) to get the “grand” tour of my new lungs. I even got to count the stitches in there on each side. I can see how those bronchs would be fun to give. You have a camera and a vacuum. I can’t tell you how many time I wished pre-transplant that we could just suck the crap out of my lungs
My surgeon came in to visit and immediately wanted to know why I still had an epidural, and I said I didn’t. “Then why are you on oxygen, you don’t need that, only while that epidural is in, off with THAT,” Now we are down to IV only and two little drains.

Tuesday started out with me just being excited. My Auntie and Uncle and baby boy were coming down and bringing their house and ours for post hospital stay. Then in came one of my surgery team to remove the little drains. YEAH! I’m now almost line free. My surgeon proclaims I could go home on Thursday and could have gone home on Wednesday but she wanted to be sure my house was here and ready. Meetings and appointments are set up for Wednesday for discharge info and post transplant instructions.
About 5pm my family arrived bring some much needed clothes and fresh faces to stare at. Oh, and a bra. God bless them.

Wednesday brought my auntie, mom, Greg and I sitting through some late (of course, it’s the hospital!) stupid appointments. We had to read from the book of stupid. All the things I can and cant do post transplant. DON’T SWIM IN STAGNANT WATER. My pets are all ok, no cleaning cat boxes. Ah darn! Sadly this whole list was brought about by things other patients have ACTUALLY done (who might I ask swims in stagnant water?) and gotten sick from. Oh D’uh? Life now is about common sense. Large crowds of questionably healthy people in a small area? Wear a mask. Going to the store, don’t worry about it. The Drs and coordinators have some conflicting stories and I pointed that out to her. She’s super nice and I will like her a lot, but her tune changed when we realized I had already talked to them, so it became “they will tell you…. But I’d prefer…..” Luckily I will again have ONE coordinator who I have 24 hour access to. There are doctors on call to me 24 hours a day also.
Later, brought the, also late, transplant pharmacist to go over my ever changing (changed less than 5 minutes prior to her walking in the door) medication list. I am taking a fairly light dose of meds which they think will continue to lighten. They are having a very hard time getting a handle on my Prograf (anti-rejection and pro-graphing med) so this one we know will change every single time I have blood work. It’s been changing daily here at the hospital. The also had to add a salt pill to my diet as I’m not getting enough salt intake. Usually a post transplant no-no.
So the Diet info went out the window for me. Though I am having no trouble putting weight back on after surgery and only lost 5# while I was “down and out”. Blah. Sucky. I was so hoping for that 40# other people have bragged of. Hopefully the walking will do it. ;-)

Tomorrow home to the trailer and Bill will be here for a few day visit. He’s been holding down my job at home and will go back to his regular job Thanksgiving week. I’m hoping to be home home the 3rd week of Dec. That’s when the appointments here drop to one a week and I don’t see any reason to stay here for that.

1 comment:

Amanda said...

It DOES get better.. and it sounds like your are getting there!! Dad says Prograf is a life saver.. he's been on it for 8 years.. Remember that tho I don't talk to you nearly enough.. I DO love you all dearly.. and if things go well enough.. I MAY (highly probable..just timing) be living in Reno in the next year!