Black Friday

What is this, day 22 since I came down here for my transplant. It is starting to seem like an eternity. Boredom has beyond set it, but I am not really "up" to much.

First thing this AM I had to be at the hospital for a blood draw. The lab is supposed to open at 7, we planned to be there at 8, since my test has to be done between 7-9. We were there shortly before 8 to find they didn't open until 8, day after the holiday and all. So at about 8:15 we find out, no, the HUGE sign at the front door was incorrect, they were actually opening at 8:30. Damn was I glad we hadn't gotten there at 7, I would have been slightly hot. At 8:40 I was back in the truck and headed for home.

Bill, Greg, and I went after noon today and checked out the huge mall/plaza over in Daly City, which is only about 2 miles from camp. I needed to get a few things if the girls were going to stay and Greg needed socks. I can't for the life of me understand why he thought 2 pairs of socks would be enough.

We settled for a Target since it seems the only wallyworld is in Brisbane and though it's probably close, it seemed too far to bounce around in the car. It still is hard to get jumbled and bumped around. Think separated sternum (though mine wasn't) and 5 perforations between different ribs. The numbness in my chest is finally subsiding, though when I get shook around it comes back. I will be glad when those nerves get themselves realigned and regrown. I had an itch on my right breast, but felt it on my left.... there is just nothing right about that.

We spent about an hour cruizing a super huge target with a full grocery store in it. The place was still packed so I wore my mask. I only wear it when in the hospital, the one place they say I don't need to, um no, sick people are at hospitals. Of all the places I may or may not wear it, the hospital is for SURE one that I will. I also wear it if the stores are packed. It's funny how many more people I notice sneezing and wiping their noses now.

When we got back I took Yo-yo's new leash and took her for a walk down the dog area and to the bluff and then back to the trailer. By the time I was on my way back my legs were getting tired and I wasn't sure I could get back up the steps. I have found when I am really tired I don't lift my right leg as well and it gets caught on the top step. I usually have spotters at the top and bottom of the steps because I can't lift or push more than 10lbs with my arms. I feel every pound across my chest when I do. I did make it pretty much unassisted to my aunts and uncles yesterday for dinner. I don't carry anything extra though, not even my wallet.

Bill left for home about an hour ago. I don't know that he'll be back down until it's time to go home. He's doing my work and his job both. Disability hasn't set in for him yet so money is really tight this payday. Uber important to keep my jobs going as they will pay the bills right now. It will all catch up eventually. Just have to hang on til then.

I'm going to attempt to wander over and take a shower tonight. I think all my wounds can get wet now. Last time it was shower day.... they re-admitted me. MUST WASH HAIR.

All is well for the time being, and while I thought I would have a whole weekend of peace and quiet, home health will be here tomorrow since they are worried about this ugly wound that isn't healing on my left side.

So much for my weekend. As if I have anything else to do right?

Thanksgiving

In our little home away from home our little family had a fabulous dinner. Bill drove down this morning and brought me my babies and I've sure missed them. They were happy enough to see me, my little yo-yo was super happy to have her mommy, Bridgette was just happy to see someone with a blanket.

Bill brought down a ham with him, Auntie made salad and rolls, Granny made sweet potatoes and turkey stuffing (greg's request), Uncle was sure we had pie and ice cream, and I picked up a veggie tray while on my walk at Safeway today. It's been rainy and wet so I haven't been outside walking much. I try to get to some store, or to the hospital every day to do walking. I didn't walk much during stay #2 because of the uber painful drain line.

The home health lady was by today to check on the new site and to do a new update since I was just released. The new drain looks awesome they said, nothing more than a needle mark. One of the old drain sites is giving them all fits. It's not sealing up, has quite a bit of dead tissue, and isn't changing for the better in it's prognosis. They are trying a new type of dressing on it to try to lift out that dead tissue and open it up to something more pink. They will now be coming out every other day to be sure it's making progress. I can't see the darn thing to tell them one way or the other. Everything else looks spiffy. The incision looks awesome, healing nicely with some Vit E slapped on it daily.

Take blood sugar, blood pressure, temp, weight, pills, mark, check, and chart.... wash rinse repeat.

Stay #2

On Friday, the day after my release date from stay #1, I had a few tests to have done. While I was waiting for test #1 I ran into my reg pulmologist Dr. Blue Eyes. He was sad to hear I felt like crap. He could also visiably see my whole body shaking and guessed my Prograf was too high, would look into my numbers, would order something other than glorified Tylenol for my pain, and told me I was doing SO SO SO good for being less than a month out! Chin up, it would get better.

Test #1 was a nice simple "spyro" which just measures my current lung capacity. While I didn't feel like I was moving more air, it turns out these lungs are working at least 4 times better than the old ones. It was good to see that, because really, I couldn't feel it in here.

Test #2 was a high resolution CT scan of my lungs. Ct lady said my right lung had fluid around it. No one called me all weekend, Bill was here to visit, and on sunday I called the home health nurse to come and see if she could pack the old drain tube hole that won't seem to stop draining.

Monday morning was a morning of tests again. Starting the morning off with a 7am bronchoscopy with biopsy. That's pretty much where it all went down hill from. They got in for the bronchoscopy and found my lungs look GREAT, but the right one was smooshed. They called in radiology to do an ultrasound to look for pockets of fluid. They found a "medium" sized one that they decided to put a chest drain in for, though the radiologist thought he'd gotten it all with the 500cc of fluid he pulled out at placement. Dr Golden (fabulous pulmonologist) said they would be doing NOTHING else to me while I was there, I'd stay over night but as soon as it quit draining I could go home. This was one of those little drains, about the size of a straw, but they placed it in my back. You can't lay on it. Mine you couldn't even TOUCH without me going through the roof it hurt so badly. Once they finally found me a bed, 12 hours in the radiology dept on a gurney, the nurse I had was instrumental in getting me some pain meds. The doctors couldn't agree and in the mean time where just letting me lie there in agony. She was one of my nurses during stay #1 so she knew what I HAD been on and what HAD been working so she just kept on them all night until she finally got me something. She also had to track down my medications since there were no orders for those either. She must have came into my room hourly with another something for me to take as the orders trickled in. While she was there she would help me shift my weight around and make it so I could lay as close to on my back as possible. This let my mom rest as she was up with me all the rest of the time.

I drained jut shy of 1000cc that night alone. We had thought that I would be home from there yesterday afternoon because at 1:30 it seemed things had slowed way down. However as the afternoon rolled into night I drained another 250cc. One more night and today they let me go, again. All in all, with the initial drainage at placement, this "medium" fluid buildup drained close to 1800cc. My heart rate has dropped considerably, which we really expected with the new lung placement but was hard to call with the pain I was in. When the poor girl came into remove the drain today I warned her it hurt like heck. She said #1, this is in a horrible place. And #2, it's laying against your diaphragm. Every wiggle, sneeze, burp, bump, cough moved it either into my ribs (where they push the tube through for placement) or into my diaphragm. When she pulled it, it was pure fire from my shoulder to my belly button. Then my right leg went all pins and needles. Once the burning stopped, about 3 min after she was done, it really did feel better.

Mostly I can notice the reduction in fluid only in that it is slightly easier to draw a breath. You'd think it would be a HUGE change. I'm sure it is! Only my chest is still on and off numb. This could take months to go away. When I get jiggled or bumped around, say in a car, my chest goes numb, and while I know I am breathing, and can sort of feel that, it feels mostly like a great weight is on my chest.

I have a free pass tomorrow and am hoping to get back to my walking, which has been far less than I was hoping to achieve. My babies will get here tomorrow, and while I'm not sure I'm having Bill leave them altogether, I am looking forward to a visit.

I'm getting rather shaky now, so I'll go for now. I hope you all have a Happy Thanksgiving. Thank you all for your thoughts and prayer. As always, one step at a time. At least now there is a light at the end of the tunnel and it isn't just a freight train headed my way.

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.

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