Monday, December 18, 2006

The Day of and After Surgery

Well, I’ve built up enough energy to try and write up a little something on my experience becoming a kidney donor and what I can remember before and after the surgery. Bare with me though, this may be long:

The day before, my wife and I had a good ‘light’ lunch together and prepared for what the next day was to entail. I say ‘light’ vaguely because I knew I had to cleanse my body soon after. At around 1pm, I drank the ‘cleanser’ (Magnesium Citrate) and sure enough in about an hour or so, it was ‘time to go.’ Although not as vulgar as some other remedies (so my Dr.’s said) this stuff does what it’s supposed to. I can’t even count how many times I had to do this and I’m sure my sister’s ears were ringing each and every time….LOL My apologies for being disgusting but this stuff IS disgusting. It really cleans you out!

I didn’t get much sleep that night either. Tossed around a bit and watched some TV. I was nervous AND excited all at the same time. Even anxious at some points; It was a very strange feeling. Next thing I knew, I heard my alarm and it was time to get ready. My wife and kids got ready as well. We all left the house and were scheduled to be at the UCSF hospital at 6:00am. We were the first ones that am/day. We got there a little early which was a good thing. Thank goodness there wasn’t any traffic. Soon after, my sister arrived with my Mom and Dad. We all sat in the waiting room and waited to be called upon. Shortly after, the pre op nurse lined everyone up and we had to check in. When my sister and I checked in, she immediately congratulated my sister and I on this journey. But she also informed us that my doctor had an emergency in my sister’s soon to be operating room. So basically, we had to wait until they were complete. Both rooms had to be available and both doctors as well. We sat in the waiting room for about an hour or so and then they called my name. I took a deep breath and said “I’ll see you guys later” (never bye; I had to remind my Mom about this as I left) and followed the nurse to the pre op room after I hugged and kissed everyone. I must admit, I got a little knot in my stomach at this point and started to become nervous as we hopped in the elevator. I even thought I would end up going to the bathroom again because of all of it. LOL I asked for strength though and sure enough I received it and it was all gone.

I got in to my gown and talked to my wife while we waited for the nurses, anesthesiologists and doctors to come in and prep me for what was about to take place. They were all really nice. They all said pretty much the same thing too. When the anesthesiologist came back in, she got my IV ready and I was basically ‘plumbed’ for surgery. The nurses came in and out and informed us that we were still waiting on my doctor to finish up. Maybe and hour or so later, my sister and Mom came up and they were across the hall. As patients were getting rolled to their OR’s the nurses had me and my sister getting closer to each other. We were eventually side by side prior to departing. This was nice. We exchanged a few words here and there. I could see the look on everyone’s face though about the unexpected. Especially, my Mom... I’m sure I had the same look too. It must have been around 10 something at this point and we were originally scheduled to be in the OR at 7:30am. We must have waited about 3 hours or so in the pre op area before the nurse and anesthesiologist came back in and told me they were ready for me. The doctor came back in to ‘mark’ me on my right side. I jokingly told him to ‘make sure you all remember that I am the Donor…not the Recipient.” Everyone laughed. They began to induce me with whatever it is they use to get me a little relaxed. They told me it would feel like I had a few cocktails or something. They did this once or twice and asked if I felt anything yet. I said no. Then they asked my wife if I drank a lot. We both laughed and said “a little bit.” I never knew a few brews and Henny could make you so tolerant. LOL They began to induce me some more and I told them that I can feel it now. It was at that point they began to wheel me off to my OR and I once again told my wife, Mom and sister that I would see them later. I actually had to correct my wife this time as she said “Bye Vave” to never say ‘bye’….cause I’d be back.

I must have been in the OR for about 2-3 minutes, getting ‘cocktails’ and the next thing I know I heard someone say “Robert, you’re in recovery and the surgery went well….you’re sister is doing GREAT!” I couldn’t even move but I remember being in so much pain. It felt like I had just got hit by a truck or something. I immediately grabbed (or tried to) my stomach area and curl up like a baby but I don’t think I actually even moved. Kind of like I wanted to do this but couldn’t cause I was so out of it. One thing I do remember though was shortly after they told me the above that I must have fell back asleep and was suddenly awaken by chaos. I heard a lot of people talking to each other and stuff moving around. And I was moving. Or my bed was moving at least because I could feel it. I kept hearing a guy apologizing to me and others asking him what he did or what happened. Long story short, it turns out he accidentally disconnected by PCA machine so I wasn’t getting any pain medication. No wonder I was in so much friggin pain! IDIOT!!! LOL I must have arrived wherever they were taking me to (which I think was my room) and I kept feeling someone holding and messing around with my wrist. They were giving me my pain meds directly through the IV at this point since the machine was disconnected. And then to make matters even worse, the machine wasn’t working in my room either. I guess from him disconnecting it abruptly, he tweaked it. They had to get me another one and in between all of this, give me more shots via the IV. The pain was the worse I had and I can remember some of it. I don’t recall how many shots I got but according to my wife and the first nurse I remember that evening, I had A LOT. I must have cause I remember barely even being able to open my eyes or talk cause it would make me so nauseated. I knew I had people coming in to visit, family, friends, nurses and all but I could barely see them nor talk to them. It would take so much out of me to do so. I remember seeing or hearing my family tell me how well Monica is doing now and how she wants to see me but could barely move as well to do so. My way of communicating at this point to them was to moan or grunt. I still couldn’t really talk. It would make me feel nauseated. I saw my wife and kids staring and talking to me. I wanted to hold them and tell them that I was fine and all but couldn’t. I could see (barely) the look in their eyes that they were concerned. Those pain meds really kicked my ass in that sense but they helped A LOT with the pain. Shortly after, I was able to say something briefly to each one of them.

Throughout the night the nurses would come in and check my vitals. This was really annoying! But I guess its protocol. They would always tell me how great and courageous I was and that I was healing fine. They told me how well my sister was doing as well. How she’s always asking for me….sending messages to me via the nurses. She was good at that. Every time they checked my vitals and all I would have to blow in to this chamber to keep my lungs circulating. This sucked! Only because the first couple of times I did it in the evening, I got the hiccups. Who wants the hiccups with a surgery like this? Thank goodness for pain meds. It must have been around 2am and I was getting my vitals checked again and I told the nurse at that time that I wanted to see my sister. She helped me get up and I sat at the edge of my bed and watched everything ‘spin’ in front of me. Man, it sucked! The friggin pain meds were still too much. I felt like tossing my guts up at this point so I let her know I couldn’t do it. She didn’t force me and let me know to tell her when I wanted another shot at it. I laid back down and I think I went back to sleep for another couple of hours. I finally got up and had enough energy (and a stomach) to go for it again at the next vital check. Not too sure what the time was but I finally made it. I asked my nurse how far her room was and she said like 5 rooms away. I walked past 3 of them and asked her again. She said its right over there. Right over there felt like a friggin mile away. But I made it. Her door was somewhat opened and she was sleeping. I told the nurse I don’t want to wake her but I guess I did. I just wanted to see her. She was so happy to see me and I felt the same way too. She asked how I was and I told her I was fine. I could see how ‘healthy’ my sister was at this point as she glowed from her room. I walked in for a few minutes but never sat. I was kind of scared to thinking how hard it would be to get back up. LOL We talked briefly, she thanked me and I headed back to my room…telling her I’d see her in the am. The next day was probably the worst. Lots of pain….sitting up and walking seemed to help this though so I got up and visited my sister again. I stayed a little bit longer this time and she seemed surprised that I was up again. I told her she needs to do the same and that the first time would be the hardest. After that, it gets easier and it did with me. We had visitors come and go the next day and throughout our stay. This was really nice. Family and friends are very important during something like this. Although, they tell me I was still kind of out of it compared to my sister who had so much energy. LOL It finally wore off and I think I started coming around to being myself after a couple of days.

You could really tell how well my sister was doing. She had so much energy and even kind of glowed from her room. Everyone could see it. It was weird. It’s truly a miracle! What a difference a ‘kidney’ makes you know? Truly a blessing…even her lab work was showing positive results each and every day. She eventually had enough strength to get up and walk around and soon enough she came and visited me as well. We would take turns visiting each other. It was our way of exercising. Each time got easier and I could tell for her as well. I stayed in the hospital for 3 days and my sister did 4. I think at this point we were both ready to be in our own houses and start our recovery. We’re both doing great. My sister had some lab work done a few days after she was released and informed me that her results were ‘as normal as can be.’ Everything is normal. She hasn’t had lab work results like this in about 15 years…INCREDIBLE!

Well, I told you this would be long. My bad! I’d like to leave you all with first thanking everyone that’s been there for me and my sister during this journey. Thank God for everything and this is truly His blessing. Thanks to our families and friends too! We couldn’t have done it without you. You guys are everything! Secondly, hopefully this will help anyone getting ready to be a donor for someone and give them the information they need as other peoples blogs helped me with preparation. And lastly, if you haven’t signed your donor card already, sign it today! Your decision could be life saving….your decision not do could let someone die.

Wednesday, December 13, 2006

It's Good To Be Home (12-10-06)

Just a quick note to all my FAM BAM and Friends...First off, I want to THANKS to each and everyone of you for your kind words before, during and after my/our surgery. It meant alot and still does. One Love...and Much Respect...to All of You!It was quite an experience and it's really good to be back home again. I'll put together a little something on my experience when I get a little more energy. Kinda tired still. And I'll have some pics for you all too! Yes! I had The Team take a few pics of "Junior" before he left for My Twin. :-) Stay Tuned...Words cannot express how Blessed I am to be the chosen one to give my sister her second chance on Life. It's truly a blessing. The look on her face now and her actions are truly amazing. What a difference! What a Miracle!! Miracles do come true...

This is it...

Well, my sister and I went to our pre op appointment last week. Did a few more tests and talked to the surgeons and nephrologists as well as our transplant coordinator. It was a long morning. Not to mention we had to fast the night before...

But everything went well. My surgeon explained to me my procedure and seems like a very nice guy. I'm very confident in him and I'm sure he will take good care of me. He mentioned how lucky I was to be in such good health and shape that I am and it will defintely help me during and after surgery. My sister's surgeon talked to her as well and went over her procedure with her too. She seems to like my doctor more....hahahahaha. I'm confident in him as well and her new nephrologists. I'm sure they'll take good care of her during and after her surgery.
One key thing to mention (and what really makes me believe that all of this is meant to be) is how the doctors stated our crossmatch and tissue tying is EXCELLENT. They see this match all the time in twins. But in others it's not very common. We basically took the same cells, genes, tissues and whatever else from our parents individually. Pretty cool... Everyone always wondered if we were twins. LOL Knowing this, it makes me feel very comfortable with the procedure and our care afterwards as well. It was like the icing on the cake as far as the testing phase goes to hear something like this. The success rate according to the doctors with a match like this is very good and my sister should do fine afterwards. I should be fine afterwards as well...

Thanks to all of you (Family, old friends, new friends) that have been in touch during these past few weeks. I never thought my 'space' on MySpace would get so much attention. LOL I really appreciate your thoughts and kind words though. Really! Defintely keep us in your thoughts and prayers this week and stay tuned...

Surgery is Scheduled

The last few days or weeks have been kind of stressful. Trying to schedule a date for surgey can be tough since you have to work with what the doctors have available and what you have going on in your life. For those of you that know me, I have alot.

With that said, I scheduled a sugery date for the first week of December...December 7th to be exact and this will be the day my sister starts a New Life.

The Phone Call

No more then a week passed and I got a call from the coordinator...I was cleared for donation. This was good news! She said the CT scan came back good and the surgeons have cleared me for the operation. I didn't know what to say at first beside "Thanks." Honestly, when I got off the phone with her, I felt a big relief. Almost like a ton of weight was removed from my shoulders. I guess the news that I was cleared to be the donor to my sister was very relieving. It's been pretty stressful for me, for both us...

I called my sister right after I got off the phone with the coordinator and told her I was "cleared for take off." She was relieved. I could tell in her voice. Now we just needed to confirm a good date for the both of us...

On to UCSF...More Testing

We finally get a call from the UCSF coordinator (Melissa) that we have been cutover to them now. This was good news. And from my understanding we were part of the first batch to go over....

I talked to the coordinator and she explained to me their procedure and all and she informed me that I would need to take a few more tests again. More blood, more urine. Some were the same, others were not. I scheduled my appointments with her directly and waited patiently for the results. Once I got them, I would move to the next one. I met with one of the nephrologists and the social worker. We had good meetings and they were very supportive. They answered all of my questions and concerns.

A few weeks later, I got the results from the tests I took since moving over to UCSF and all was good. I was cleared again and ready to move forward. The last and final test I had to take was the CT scan (angiogram). It took a couple of cancellations but I finally got my appointment in and took the test. It was pretty weird. For starters, I had to fast from dinner until I got there to UCSF. My appointment wasn't until 10:00am (considering the traffic) so I was pretty starved by the time I got there. It's good I ate BIG the night before....LOL As soon as I checked in they gave me two HUGE glasses of water to drink to fill my bladder while I waited to be called on. I almost lost these two glasses....keep reading.

They finally called me in and I must admit that while I was putting my gown on I started to get nervous. I guess I was just thinking too much. I knew this was the last and final test on whether or not I could donate to my sister. Pretty much the deciding point, you know. This is the test where they see my kidneys and decide which one they're going to take and how.

I had to lay flat on this table and they sild me in to this machine that takes pictures of my organs (kidneys). Almost like those tubes you see in shows where they slide people in, just this one was half the size. They had an IV in me that they filled with saline. She told me to listen to the machine and just do what it says. It basically tells you when to breathe, how to breathe and when to hold your breath. Next thing was to shoot the dye in me so they could get a different image of my kidneys. She told me I would feel warm or hot inside when the dye was released and boy was I. It felt like my whole body jumped 100+ degrees instantly. I felt the sensation all throughout my body. I almost pee'd on the table cause of the heat...LOL After the dye was released they took more pictures. Man, I couldn't wait until they were done. I had to go the bathroom. I asked her how many they take and she said about 1000. The machine takes so many per second. Pretty amazing stuff....

The whole procedure was done in about 30 mins. I put my clothes back on was on my way to lunch...or brunch....after I went to the bathroom of course. LOL I was starving. My wife and I grabbed a bite to eat at Fisherrman's Wharf and made the best out of the rest of the day. Thank you again for accompanying me...:-)

They told me the results would be in in about a week or so...

More Tests....Then....

My next set of tests to be performed were what is called "tissue typing" or "cross matching." They sent me a lab slip to bring to my local Kaiser, which is where I got the blood drawn. (I've never gave so much blood in my life....)

Basically, these tests are done to make sure our tissues and cells won't fight each other. Being brother and sister we did this alot when we were younger....LOL I'm no doctor or anything but in a nutshell, these tests are done to make sure my sisters body won't fight off my kidney and or reject it if and when I was to donate. I got the results in a week or so and all was well in this area. I was cleared to move forward...

[Again, more feeling inside that this is going to happen. I am going to donate my kidney to my sister...]

Once cleared of the tissue typing, I had to collect urine and bowel movements (pretty sick method) for them to analyze as well. They sent me all the required tools and collection utensils I would need for these tests. Off all the tests, this was probably the one where my sister's ear's must have been ringing. LOL I hated doing them. I didn't mind collecting my urine for 24 hours but collecting the other movement...for three days! UGH!!! I couldn't wait for that part to be over. I had to set up another appointment for them to do EKG's and some other stuff so I planned it to be around the time when I was ready to turn in my "stuff." I had to go to Kaiser in SF for this part. This is where the transplant team resides and a series of other tests were to follow...

My wife and I (Thanks for coming along for all the trips. You are truly the best!) made the trip to the city. I remember we were almost late cause of all the lookie loo's during the morning rush. We had to go the lab first to drop off my "stuff." Boy was I ready to get rid of that. After I dropped off my "stuff" and gave more blood, I was scheduled to see one of the doctor's (nephrologist). She examined me and explained the procedure. We talked about a few things and she kept examining me. After I saw her I was scheduled for an EKG test (which I passed with flying colors). Then I had to do a chest xray. They did a breathing tests on me as well. Forgot what it was called though but it was pretty hard. I had to blow in to this device as hard as I could for as long as I could. Basically try to get rid of any and all air in my chest. Sounds easy but the amount of times and length of exhaling gets to you after awhile. My stomach was so sore after this. Felt like I did a thousand crunches....

Next thing was to meet the social worker. She pretty much examines to see if you are psychologically ready to go through a surgery like this and to make sure you are comfortable with your decision. She was a really nice lady...

All of these tests took place in one day. It was rough but well worth it. I had a glucose screening that I had left to do so I scheduled that when I was ready to fast again and sit for 3 hours with nothing but that sugar water they give you prior to the tests.

After all of this, I found out a few weeks later that I passed everything. This was really good news! The only thing left for me to do was to take a CT scan (angiogram) of my kidneys. This is done to verify I have that I indeed have two good kidneys and which one they would be taking....

[Again, I had this feeling inside that this is going to happen. I am going to donate my kidney to my sister...]

Unfortunately, we never got to this part. For those who are aware of Kaiser and their Kidney Transplant Department, the department was shutdown due to somesort of negligience on their part. Long story short, Kaiser used to outsource their kidney transplant patients to UCSF. They figured they would get smart and hire the right staff to do it internally within Kaiser. They did and were somewhat successful in it. But during the 'merge' of doing it all internally, patient records and other stuff were mishandled or something. The end result was Kaiser had lost their department. They now outsorce to UCSF again or whomever depending on the region where you are at.

This kind of sucked for both me and my sister considering we were so close. We had to see if and when we would be sent to UCSF and what would need to be done to continue this journey....not very good news for her.

The Beginning of the Tests

The journey to becoming a donor is no walk in the park. I mean, there are a ton of tests. Which is obviously a good thing since you and everyone else want to make sure everything is 'right.' Each tests is the decision maker on whether or not you move forward or not. I passed all of them with flying colors....at least that's what the Dr's said. Guess, I'm healthier then I thought I was... ;-)

We (my sister and I) started this journey under Kaiser Permanente. Being members of this hospital made taking the tests alot easier for both of us. I was assigned a coordinator and I believe my sister had her own as well. My initial test was a simple blood test. This was to see if we had the same blood type.

[When my sister first found out she was in need of a transplant, we asked anyone and everyone if they were interested in taking the blood test as well. We sent emails and letters to our families and friends just in case anyone was interested in becoming a possible donor...thanks to those who responded with their kind words and to those that took the tests...]

The results came back in about a week or so and WE MATCHED! Honestly, when I first took the blood test, I didn't know what to expect or how to react if and when the results came back. What if they came back negative? How would my sister react?? Stress is not good for a person in her condition. I didn't even know what type of blood I had. Well, I do now....it's B+. We both have B+. When I found this out, that we were a match, I had a feeling in my gut that I was going to be her donor. Although I had mixed emotions at the time, something told me that I was 'the chosen one.' It's hard to explain but I knew....

It was now time to start the rest of the testing...

A Little Background

I have been married to my lovely sexy wife Leila for 17 years now and I have 3 beautiful children named Antonio, Sarina and Alexander. We have a couple of dogs (APBT/AmStaff) and a reef tank. I enjoy family time, kicking it with friends, sports and working out as well as riding my Harley. I am the oldest of three kids. I have two sisters, Monica and Yvonne. Monica is the reason for me creating this blog. Figure what better way for me to express myself, organ donation and make people aware of my sister's journey and what's going on in both of our lives during this journey.

You see, my sister Monica suffers from a disease called Lupus. She's had Lupus for over 15 years now and has been "up and down" during that entire time. Although it has been in remission for quite some time now, the journey she has been through has not been a pleasant one. Lupus is a disease that has no cure and can flare up from time to time. For more info on it google it or go to www.lupus.org. She's been in and out of the hospital more times than I can count, she's been in ICU 3-4 times, has done chemotherapy more times than I have fingers and maybe toes and has also had her hip replaced not too long ago. She's only in her 30's, mind you. Unfortunately, during all of this her kidneys got destroyed. Lupus is a big factor for this. She's basically now in need of a transplant. She started dialysis earlier this year and was placed on the National Waiting list (www.unos.org) She's doing alot better. She went from sitting at the clinic hooked up to the dialysis machine for three hours a day 3-4 times a week to the PD treatment which enables her to do it at the comforts of her own home. But as some of you may know, dialysis is not a pleasant way to live. A kidney transplant is what would give her her LIFE back. And LIFE is what I want to give her more of by donating one of my kidneys to her. She is the reason why I have decided to become an live organ donor...

I remember seeing my sister in the hospital (many many times), suffering from her illness. It's hard to watch someone you love and care for so much in a position like this. You feel really helpless. And it takes such a toll on you as well everyone else. I remember taking her to the clinic so she can do her 'thang' and crying all the way home when I left there. Never did I think I would know someone so close to me in need of a kidney transplant, let alone my own sister. Never did I think I would ever donate a kidney to anyone, let alone my own sister. But I believe everything happens for a reason. On that same note, I believe my purpose, if anything on being here, is to obviously donate one of my kidneys to my sister to help her live (see my blogs). The past few years have been tough on her but she is very strong. I admire that in her cuz I know alot of people would have gave up by now. But my sister refuses. Although at times, it seems like she's on the verge of breaking or giving up, she bounces back and continues to fight. She's a true warrior!

From the moment I found out my sister was in need of a transplant, I did a lot of research on organ donation. Organ donation is the only means of getting my sister back to somewhat of a normal life. Her life will never be the same but donation will give her another chance. I was never aware of the importance of organ donation until my sister was put in to this position. Let alone, live organ donation. It's amazing what one person's choice can or can't do. Check out these facts:

More than 91,000 men, women and children currently await life-saving transplants.
Every 12 minutes another name is added to the national transplant waiting list.
An average of 18 people die each day from the lack of available organs for transplant.
In 2005, there were 21,215 deceased organ donors and 6,895 living organ donors resulting in 28,110 organ transplants.
In 2005, 44,000 grafts were made available for transplant by US banks.
Approximately 1,000,000 tissue transplants are performed annually.

You can see how important organ donation is. Whether it's now or later, it's an important choice that we should all really consider and think about. I must admit I was never really infomred until it affected me directly. But once I started my research and took the blood typing tests to only find out me and my sister were a match, I knew I was going to be donor. Her donor. Something just told me inside that I would be the one...it was weird.