I am so proud of Ron.

All day yesterday Ron had a creeping headache. Just after dinner it began to get much much worse and by 11pm he was officially miserable. Then the poor guy threw-up. I had been asking Ron if he wanted to go back to the ER but he was steadfast that he just wanted to sleep it off. Once he threw-up I put my foot down and said we where going. He put his foot down and said no. And I harshly told him he didn't have a choice this time. He still said no, until I started tearing up and he put his jacket on.

After a few more hours they seemed to have the nausea, and headache under control. They took him for scans, x-rayed his chest and CT'd his head. They didn't find anything wrong, but just to be save they asked him if they could do a lumbar puncture (spinal-tap) to look for a possible infection... he said no, I said yes, then he said yes. It turned out to be so much less painful than he expected. I was so relieved.

They didn't find anything conclusive from the puncture but it can take up to 24hours to finish all the cultures, so the admitted him for the night, just to be safe. In the morning they told him that they found he had a sinus infection. It didn't have all the usual symptoms because of all the medications he is on. They then told him that they would like to keep him another night, not because the infection was serious but because they wanted to keep him on the heavy IV antibiotics as long as possible so they can kick the infection as fast as possible.

Then they gave us the GOOD news. He was still on schedule to be sent home this weekend! Yay!

Anyway, I said I was so proud of Ron. I AM so proud of Ron. This last week has been especially hard on him. Being copped up in this tiny apartment, unable to move without pain was starting to really weigh on him. I was afraid that this set back was going to really upset him. I couldn't have been more wrong. He was down right positive today. Telling "that's what she said" jokes with his nurse and smiling more than I've seen him smile all week. I am so proud of Ron.

Feb 24th

Here we are again, a few more days have gone by and we are still here... still kicking. Soon,Ron and I will be able to go home where we can truly relax. Ron had a nice nap today... which was huge. Lack of sleep really messes with your head. We are both doing all we can to just get by and brush off as much stress as possible... it's not as easy these days as it usually is for us, but we are both two people who bounce back and I know soon we will be able to to just that... getting home will do wonders for both of us. I keep trying to remind him not to stress over things we can't do anything about right now... "just focus on this moment and make it the best we can."

I needed someone to tell me that today and yesterday. I allowed something (fyi-completely unrelated to what is going on here)I knew was out of my control, and more than I can handle on a good day, sneak in and drowned me. My dad accepted my very frantic phone call, listened to me cry and vent then eventually changed the subject and then in my dad's perfect way he made me laugh. I am honestly ashamed that finally I broke down on Ron today. It was unrelated, poor timing and so unfair to him. I did my best to run into the next room and sob in my pillow but I know I upset him. He is already dealing with so much, having to watch me cry was the last thing he needed. It was more than a lesson learned, more than just for this situation but all future trying times in our lives... one thing at a time... US FIRST.

Ron got the rest of his staples out today, it looked like it hurt this time more than the last. His incision still needs a lot of healing so they patched and bandaged him up. We need to keep a close eye on it over the weekend but I think he is grateful the staples are gone. I took a couple pictures and will try to add them later. Ron's numbers still look great! We couldn't be more thrilled about it. It's just a countdown now until we get to go home. Abby here we come!

Oh look Babe, it's sunny!

So last week Ron was asked to participate in a immune study for CPMC. So this early morning when we went to the lab for Ron's blood work they took an additional 12-14 vials! When he came back and told me I was stunned, with his usual 4-5 they took near 20 vials of blood from him. The sweet nurse brought him juice and told him to drink it while she drew the blood, because he has to fast after midnight the night before for clean blood work. She was concerned my superman would get woozy.

After blood work we came "home" for a couple hours. I made him pancakes and sausages (Ron hasnt been able to eat full meals yet because he gets so full so quickly, but he did his best to stuff himself)... then we went to clinic. Clinic is where they usually go over how his blood looks, adjust meds, and answer any questions we have. This Clinic they took half of Ron's staples out (now he is left with 24). It looked painful, especially the ones that had some skin overgrowth... I could see the skin break and it looked like little bee stings. ouch. I took a picture. Unfortuanatly, getting a few of the staples out was not the relief Ron was hoping for. He forgot to take in account the multiple layers of internal stitches. (along with Rons liver replancement they also had to replace the hipatic artery, lots of ducts, viens and arterys to attach. I can't explain to you how that feels in his belly... I imagine it's odd to say the least. Perhaps soon he will be able to write a bit about it himself.)

The Doctor was really excited that Ron's "numbers" we looking so great. He was probably the most reassuring Doctor we have meet from the Transplant Team. He was genuinely interested in Ron, his health and his wellness. He listened to Ron about his discomfort concerns and his mental state. Ron is getting a little down being cooped up in this tiny apartment as well as adjusting to a completely life changing event. Most of the doctors tell us, "oh, that's normal, you just went through major surgery." This Doctor sat next to him and talk to him one on one about how he was feeling and reassuring him that in time the emotional effects of the transplant experience will get better too.

When I meet Ron he was around 170 pounds. On surgery day he weighed less than 150 and after surgery he clock in at 141 lbs... he has been a steady 138 lbs for two weeks. He told us to begin to take photos of Ron because is three months we wont believe the transformation.

Ron was feeling well enough today to take a short walk down the street, but I think we underestimated how difficult coming back up the hill would be. Stupid hills. I do think it was really nice for him to get outside... even though it was painful.

Recap

Alright here goes...

Tuesday was pretty much an ordinary day for me and Ron. We got up, he went to work and I did my usual housework and Abby duties. Ron came home from work exhausted which seemed to be happening more and more in the last few months. His long days were beginning to take more of a toll on him every week, with that we were both seeing some more of the "future" symptoms of the cirrhotic liver. He went to bed very early, around 9pm, because he was so tired. Which turned out to be great for him in the up coming wee morning hours. I stayed up much later and finally crawled into bed around midnight and Abby was an unusual high demanding dog that night. She got me up multiple times to let her out for potty-time. I ended up finally getting to bed around 2am... At about 4:45 Ron's phone began to ring. By the time he realized what was going on the call ended. He noticed it was a (415) area code which to us means one thing.. California Pacific Medical Center. So he immediately tried to call back but the line was busy. At that moment he saw his work phone light up. He answered it and so began our adventure.

I watched him and did my very best to eavesdrop on the call. I could make out that they had a liver and it was match for him. The offer came to us, the liver was from young donor and in good condition. After he accepted the offer they came back to us with a condition... we had to wait while they attempt to contact another possible recipient to see who was higher on the list. I immediately got up, through some things of ours in a bag and jumped in the shower... miss optimistic huh? Ron remained in bed staring at both his phones, that he held one in each hand in each hand. When I got out of the shower he was in the same position... staring. It took about 20 minutes before they called back.. I don't think he blinked once during the wait. When they called back they told him it has been released to him and asked again if he wanted it... we said hell yes we want it! Ron got up threw on some clothes and within 5 minutes we were out the door. In our rushed excitement I forgot the bag a packed with our clothes/ect, duh.


Ron started the drive from the house and by the time we hit Atascadero, I made him pull over because he was driving to slow... lol. I told him "I am driving and if we get pulled over I'll take the ticket." I made up some time but we still hit traffic in San Jose and on, but we made it to the hospital in about 4hours, maybe 4.5, I lost track in my singlemindness of GET TO THE HOSPITAL. I drooped him off in the front of the hospital and drove around to park.

By the time I got to the lobby he had already been admitted and I went on, what some might call, a wild goose chase to find where they took him. When I finally made it back to him, they had him in a gown and were asking the usual round of questions. We ended up having to wait quite a while longer because the surgeons needed to finished a surgery before him. Once they got him ready they took both of us the the operation floor dressed us up in sterile wear and told us about all the horrific things that they don't think will happen during surgery.

I can safely say that it scared the shit out of both me and Ron. I had to leave tearful eyed and full of a swirling emotion hurricane of fear, hope, joy and loneliness. About 10 hours of waiting in the lobby, the surgeon came out to tell me the surgery went well (some minor details of the operation) and someone would come get me once they have him setup in the ICU. I waited about 15 more minutes until I escorted MYSELF up to the ICU floor. And paced about 15 more minutes before I picked up the phone that connected you to the nurses station. They buzzed me in and I sat with him for a couple more hours. He was sedated and had tubes everywhere, but the tubes weren't the worst of it. To simply state it, Ron doesn't do well under sedation. I don't know how else to describe it other than... he fights. He struggled in his sleep trying to pull out the ventilator and the central lines they had in major arteries in his neck and legs they ended up strapping him down so he couldn't tear them out.

The doctors and nurses had to devise a way to bring him out of sedation without harming him or themselves. They decided that they would remove the respirator and major artery catheter in his leg. They usually don't like to remove these things while the patient is under sedation because it is safer to do it while they are aware of what is happening. Unfortunately, that was not an option in his case. (Fast-forward to a few days later, Ron was complaining that the muscles in his right arm was very sore, later i realized it was because he was struggling against the restraints all night and day) Once they removed everything but the drainage tube from his abdomen and the central-line in his neck they began to slow the drip until he was awake. P.S. I have a great photo of the catheter they took out of his neck... it was huge.

That gets you up to date for the first three days. Whoa...

Day 19!!

Wow, I am not sure if it's the longest 19 days or the shortest 19 days I've ever experienced. It seems like yesterday I was in the waiting room for the 9 eternal hours waiting for the familiar face of Doctor Mahanty. Every day that has gone by since seems to linger for longer than usual, some moments I spent wishing they would end and other moments pleading that they last forever.

One of Ron's RN's (Bill) stood by me with tears in my eyes watching Ron slip in and out of consciousness and confusion... Bill stood stoic reassuring me that the rare good moments would begin to out weigh the bad until the good overcomes the bad completely. I desperately needed to believe him. And slowly but surely he was right. With each day that passes things seem to be getting brighter and brighter. Now don't get me wrong, it's far from easy and even further from over. But Ron and I have both come very far from where we started this journey 19 days ago.

Hello Friday Morning.

We had a good night last night, everyday is a stuggle but his spirts really came up when Dean came by. Every morning he wakes up sore but this morning he was feeling it much more than the last couple days. I think he may have overdone it a little... or maybe just the right amount.

"They say laughter is the best medicine, but I have a feeling that for the next month or so it's not going to be the best thing for me... that shit hurts" -Ron Rich

Internet Troubles

We are having some difficulties trying to connect to the hospital WiFi across the street, but hopefully tomorrow we will have it figured out.

Anyway, Great News!! Ron's biopsy was cancelled because his test results and sonogram were back on track! So now he has a full weekend to really relax. He is getting quite restless and longing to get out of the apartment, for more than doctors and nurses poking and prodding him. I hope this weekend reliefs his anxiety a little, I just worry that he will over do it.

I was hoping since Ron's good friend came up to help this weekend, I might be able to make a quick trip home. But Ron's restlessness concerns me. He is getting more and more frustrated with his situation and the lack of control he is felling right now. Although he want badly to do everything he needs to in order to keep himself moving forward and keeping his new liver healthy the ridged schedule is very difficult for him to get used to.

Although I fully trust Dean to keep Ron in check, it takes days of professionals teaching me how to care for him, I don't know if I can really impart the knowledge it takes to care for him to someone in a brief conversation. 40+ pills a day, each with multiple side effects some of which are normal and others that may need to be treated as well as a separate list of symptoms to look for in order to catch infection or rejection before it gets life threatening. Ron is slowly learning that he needs to tell me everything he is feeling, but I fear that he is going to put up the tough guy in front of his "boy." I already see it happening as they talk on the couch.

I am sure I am just being an over protective worrywart.

And so it goes

So it's not exactly smooth sailing. With the unexpected pain Ron is experiencing in his back bringing us back to the ER then some less than perfect blood test results, this week may prove to be trying.

I haven't really got into to many details about what happened before I got the blog up. I don't know if it's just because there is SOOO much to say and so little time to type it, or if I am still trying to figure out what happened myself. I'll try to work on filling in the missing details very soon. In the mean time here is where we are at today.

Ron's doctors are a little concerned with one of his "numbers" from his last couple blood tests. They are not improving at the pace they normally expect to see. That means that this week will be interesting. Tomorrow Ron is scheduled for a sonogram. Thursday he will give more blood for testing and depending on the result of the sonogram and his blood test, they may have to do a liver biopsy on Friday. Because of the medication he is on they don't want to do a standard biopsy where they get a gigantic needle and poke him through the ribs to retrieve a sample of his new liver. Instead they well go through his neck... how that works is beyond me. Although I do know they call it a trans jugular biopsy... (now that's some cylon shit)

But I will tell you, after this experience I am beginning to find myself more interested in medicine than I would have expected. For the last few years I have been singly interested in pursuing a law degree... I may need to do a bit of research soon.

There are a few different reasons his test results would stop progressing... I will do my best to explain to you the dumbed down versions the doctor explained to us.

#1 Rejection... the doctor told us this is the less likely of the three things, and although very scary, it doesn't happen over night and its very treatable through medication adjustments.

#2 Bile duct... so there is a duct that goes from the liver to the intestines... you might imagine what it's for... anyway. no two bile ducts are exactly the same size, the two different size ducts cause pressure build up (like a traffic jam, it moves through but gets congested). And it is the most common complication of the liver transplant surgery. Infact 3 of the 5 post-op patients at the support group mentioned they had this issue. If this is the reason then he needs to have a stint put in the duct. Basically its like an umbrella and holds the duct open.

#3 Is my favorite... the liver just needs more time to "wake up" because Ron had to wait quite a while before he got into surgery his liver was "cold" for longer than optimal. they pump the liver with "preservatives" to keep it fresh and sometimes it takes a while for the liver to process out the junk. They set the procedure on Friday as tentative just in case his liver decided to co-operate.

so that is Today... tomorrow and the next two days. We will keep you posted as we go.

A message from Ron!!!

Today has been a full day of rest. Was able to pull four hours of sleep last night, leaving me completely drained in the daylight hours. Yesterday brought unsettling news of a possible problem with the bile duct and it's operational abilities. Wed. will bring more testing and a transjugular liver biopsy to determine next attack. Keeping you all in my thoughts and really praying everything starts to work properly soon. Funny how my dreams are filled with Best Buy, budgets, fears, skateboarding, punk rock and friends. My medications really mess havoc with realities and falsities but through it all I am doing ok...... I'm not crazy.... "all I wanted was a pepsi"!!!!!!

I personally would like to thank each of you for spreading the word on ronrichrecovery.com. The notes, emails and support that I am recieving make each day easier to cope with. Like I've always said, no regrets. If I could change anything though, it would be to have everyone back together who havent made it as long as the rest of us have.

One Day At A Time

Today is just another reminder... one day at a time. Recovery from a liver transplant is anything but black and white; it's grey, purple, blue and red.

Ron had another difficult night and rough morning. His back pain is keeping him from getting and staying comfortable at night. He can't seem to sleep more than 2 hours at a time, sometimes he is back up after 20 minutes, trying to walk out the discomfort. By about mid/late morning he seems to do a little better, and he is able to move about a bit easier.

We made our way slowly from labs to support group to clinics. Today was good because the appointments were scheduled pretty far a part so he was able to rest in between. We are fortunate enough to be so close to the hospital. I cant imagine having to try to get to those appointments from further away. But as each day progresses I have confidence that these short walks will soon be as easy for him as they are for me.

The most difficult part of this experience for me is not understanding the pain and physical recovery but understanding the emotional impact that being in pain and being unable to move in the ways he used to. Sometimes looking forward to the future of a full recovery isn't enough to cover the frustrations of this current moment. He is managing well, although he has as many good hours as he has bad hours. Today was a roller coaster day, still through the frustration, exhaustion and pain, I still see those wonderful moments where Ron's beautiful spirit shines though. I am living off those moments.

Ron always says, I came in knowing. In a way is right, I met Ron in the midst of this bump in the road, but I tell him I didn't have a choice. I fell in love with him long before I was ready to accept the responsibilities that were to come. And here I am... unprepared and unable to do anything but love him completely. So that is what I intend to do... Love Him Completely.

Sunday... Funday

The good news today is that there is really no news. Ron is going better everyday. Today was a nice relaxing day for him. Tomorrow should be fun it's going to be our "workday"...; labs, Doctors, clinics, support group. Fun Fun Fun.

Thanks again for checking in.

What goes down, must come up... or something

Well, I am glad to report that Ron is safe and sound back in our temporary SF apartment. He was released late this afternoon and is currently resting comfortably... thank the gods.

They believe that the pain is due to the combination of the muscle loss pre-op and spreading his ribs apart during the surgery. The liver is located directly below the diaphragm and is still covered by the ribcage so in order to get access they have to open up the ribcage, but this causes an exuberant amount of pressure on the back. Right after the surgery they told us that he should expect back pain. His muscles were already "damaged" from the old liver's inability to process protein properly, so when the spine was strained the muscles weren't in good condition to support it. Then the bed rest needed to recover from the surgery put more strain on the muscles causing increasing pain. We are still working to keep the pain under control and seem to be on the right track.

So, bottom line... Ron is still doing well (liverwise). He is going to be in pain for longer than any one of us would like. But since his abdomen is healing nicely he should be able to do the work needed to tend to his back soon. It's going to take extra physical therapy to get him back to %100 working order, but we couldn't be more relieved that this complication is unrelated to his liver.

15 steps forwad half a step back

Ron had to go back to the hospital last night, he was having extreme back pains for the last two or three nights. While his abdominal pain seemed to be subsiding slowly the back pain seemed to be getting worse and the medication they gave us to help him wasn’t working anymore. So, I called the 24hour number they gave us to see if the on call doctor knew what we should do. We waited about an hour and when he called, I explained our concerns with his back pain. Ron didn’t have a fever or any o the symptoms that would point to infection or rejection so he said that it was up to us to take him back to the hospital or not. Ron was just so uncomfortable and it wasn’t getting better so as soon as I got off the phone, I put his shoes on and we walked across the street to the ER.
We were checked in at 12:30am and the ER doctor (Doctor Anna Carl) came to see him right away. Ron explained to her what was going on. She did the doctor thing, and did his workup. She took labs and called the OnCall liver surgeon. She told us that she didn’t believe it had anything to do with the liver, there wasn’t any sign of complications to the liver, but she was going to wait until she heard back from the surgeon before moving forward. She said at they would most likely admit him, just as a precaution.
About 5 hours later, Doctor Woo came in to look at him. She is one of the doctors that work directly with Ron’s liver specialist Doctor Bonichini. She did another more extensive evaluation and came to the same conclusion, the liver seems to be fine, but she ordered a few more labs and an x-ray. After, Doctor Woo came back in she said that they were going to admit him so that they could figure out why he was having this pain and try to heal it, rather than just continuing to cover the pain with meds.
Although I was incredibly sad to have to admit him, it was a relief to know that at the very least they are able to manage his pain there and hopefully find a way to treat it. They brought him back upstairs and got him in a room on the orthopedics floor until a room on the transplant floor opens up. When I was finally able to get Ron settled in, he made me go back to the apartment to try to get some sleep. I was 8am by then and he was getting really concerned for me. I had been running on 3-5 hour sleep a night since last Wednesday and I am sure I looked worse than he felt. So tearfully eyed, I reluctantly left, immediately crawled in to bed with my jeans on and fell asleep.
I will continue to keep updating you all. Thanks for checking in on Ron!

11FEB2011

Long Day today, it was supposed to be our first day of rest. We had no appointments, or labs today... so we thought "ah, this is going to be so nice, just rest and recovery day" HAHA Not so much. We did get a lot done though. I was able to walk to the corner market for a few simple groceries and two yummy deli sandwiches. :-) I was also able to do laundry (thankfully there is a washer and dryer on the first level of the building), cleaning the bathroom and do the dishes.

We are starting to get a handle of the complicated medication regiment, which is a huge relief. I made a number of phone calls, trying to get a few the intricate financial details you never think about before hand. As well as little things like ordering Abby's medications, as well as, planning out the weekend and a short day trip back and forth to the house to take care of a few things and pick up a few things... :-)

Ron is still doing well, he is slowly recovering and finally able to move around the apartment a little bit easier. It's a slow recovery and he is pushing himself more everyday, I think just to make me worry. I am trying to keep a very close eye on him, seems like every time I turn around, he is wincing in pain trying to organize my "messy" paperwork. I never thought I would have to scold someone for cleaning.

We are excited for Monday! We have our first time at support group as a POST-OP liver transplant patient! I have no idea what we are going to say. Usually Ron is the one who talks at these meetings anyway, I tend to just introduce myself and let him do the talking. Although, I can't speak for Ron but I am so interested in hearing the stories from the other side and getting something new from the experience.

Thanks for checking in. Feel free to post questions.

Welcome

Thank you for visiting Ron's recovery page :-)

I will "attempt" to post updates daily on Ron's recovery. I feel this is a little informal, but honestly, I know how important regular updates to our friends and family are, but it was beginning to be more than I could handle. There just weren't enough hours in a day. I have trying to keep up with calls and messages to both Ron's cell phones and my cell phone, both facebooks, as well as take care of Ron, his schedule, our daily needs, his medications, and meetings with his doctors. I hope this will at least reduce the work load a little.

We have receive tremendous amounts of help from family and friends alike. It would take all day to thank everyone who has (or have offered to) pitched in, or have been emotion support for me. But I would like to send a special thanks to; Charleen and Kyra, my sister and my parents, Ron Finley and Kitten, Kimo and Matt McAlpin, Michele, Erica, Gary, and Pari. I wont go into details but you all have been there to fufil specific needs that no one else could have done.