Tuesday, October 19, 2010

4 Week Update & Question Request

Today marks the 4 week mark since the transplant! 4 weeks was the target point for me to return to work (yes, I returned at 2 weeks) and to be able to return to lifting objects greater than 15 pounds (I have tried to stick to this one).

I am happy to report that I feel wonderful! My energy has returned in full. I had to work full days this weekend so I am on 9 straight full days of work and yet still have fairly normal energy. Can’t beat that! I also rarely ever move in a way that causes discomfort now. The exceptions are if I try to sit up and twist at the same time or if I try to sit up while holding something heavy – both cause a sharp pain in my side.

The scabs and glue are almost completely off my incisions – replaced with nice new skin! I was thrilled today to be able to start carrying my laptop bag into work instead of having to wheel it in and take the elevator (my office is only on the second level – my pride took quite a hit wheeling my little bag into the elevator each day). I guess you could sum all that up by saying that my life has returned to normal.

Thanks again to everyone for your outpouring of love and support! Please do keep Candi in your prayers as she continues her recovery. Hopefully we’ll get an update up on the blog from her soon and I’ll continue to keep you updated on how I am doing.

Question and Answer Request: As you all know, I am writing this blog in part to create a resource for those who are considering donation (and their family and friends). I would like to add a question and answer post to answer all of those burning questions that everyone has about what the process was like (or for Candi – I am sure she will be willing to answer questions as well).

I already have quite a few questions but need more. This is where you come in – what questions do you have (you can post them as a comment to this post, on the Facebook page, or can email me at doxadigitalimaging@yahoo.com)? The more questions you ask – the better this resource will be for others. Once I have a good list, I will add the post. Thanks!

Friday, October 8, 2010

Post Op Visit & Day 17 Update

On Tuesday I had my post-op visit at the transplant center. They took another blood sample and did another urinalysis. The blood sample was to check my creatinine level (measures your kidney function) as well as other blood counts. The urine sample was to check the protein content in my urine. Both of these tests came back as normal so I’m all set until my 6 month check-up.

The doctor did have a lot of fun with my creatinine level. The lower the score, the better your kidney function. Candi started at 6.0 (complete kidney failure) and I started at .9 (well below the 1.5 that is considered normal). The goal was for Candi’s score to be at 3.0 immediately after the transplant but she made it all the way down to 2.0. I, on the other hand, was at 1.2 after the transplant (still a great level).

Well, the doctor was very pleased to tell me that they had just measured Candi’s level the day before and she was at .6 compared to my 1.2! He said that she clearly knows how to use my kidney much more efficiently than I did. Thanks doc. What that does mean is that Candi’s kidney function levels are absolutely phenomenal. How can that not make you smile?

The doctors also took a good look at my incisions and reported back that they looked great. I have graduated from lifting nothing over 10 pounds to lifting nothing over 15 pounds (and get to graduate to 20 pounds in a week)! This is especially good news for my cat, Pippin. He was sitting at about 12 pounds so he has been out of luck up until Tuesday. The doctor was also happy with my energy level, that I was off the pain meds, and that I was resuming some normal activities like work. He was comfortable with me driving and encouraged me to step up my cardio (I'm up to a mile at a fairly fast pace).

One piece of info that I didn’t know was that I was only supposed to be eating bland foods for the first 30 days. At that point I had already eaten out several times and the food was definitely not bland. Oops!  To show my discipline, I left the transplant center and had a Philly Cheese Steak at my favorite spot in Manassas (Philadelphia Tavern for you locals)!

This was my last visit with the transplant center so they also gave me some parting instructions. I was encouraged to buy a blood pressure monitor and to log my blood pressure once a month in a notebook. When I visit my primary care physician, I am supposed to bring in that log so he can see my blood pressure over time. If I notice my blood pressure rising above normal levels, I need to take action to make sure I keep it under control. High blood pressure is one of the largest drivers of kidney issues so this is an item I need to stay on top of the rest of my life.

I was also asked to have a physical performed after 6 months and then every year after that (including full lab work). I have the option of doing this at my primary care physician or returning to the transplant center to be checked. Since I am two hours from the transplant center, I will choose to use my PCP. I was given a nice certificate and pin as a parting gift from the transplant staff. Unless something goes wrong, this was my final visit to the transplant center.

After my delicious cheese steak, I had the opportunity to visit with my friends at the News & Messenger.  It was great catching up with them and having the opportunity to thank them in person for the wonderful gifts (I am totally addicted to the Kindle!).  They are a great group and I feel honored to call them friends.

So how am I doing? Great! I have now made it through my first full week at work. My energy level is continuing to rise and my pain level is continuing to fall. Most people who see me now would never know that I just had surgery 17 days ago. I’m definitely not at 100% but I feel like I am on my way!  Thank you yet again to those who have been praying and also a special thanks to those who have donated to our efforts to raise money for the National Kidney Foundation through the 2010 Kidney Walk.  You all are great!

Monday, October 4, 2010

Recovery Days 11 & 12

I am psyched to be able to report today that I am finally out and about!  Yesterday I drove to and from church and made it through an hour and a half Sunday School class.  It was great just to get out and see people...although the less than comfortable chairs were a little annoying.  Overall pain level was minimal.

Today was my big day - the return to work!  I planned to work until my body told me it was time to leave and set an internal goal in my mind of making it through lunch.  I ended up not leaving until 5:30...and I still feel great!  The pain was very minimal and it was so great to see my colleagues and not be sitting at home! 

I thought maybe I would pay for it this evening (usually that is when the pain catches up to me) but I still feel quite good.  I even finished the day off with a good walk around the neighborhood.  I know I still have a long way to go before I hit 100% but today definitely felt like a great day.

As a reminder for those thinking I am nuts, I have a sit down job (insert lame bean counter jokes).  Working from the office is really not very different from working from home.  The only factor that adds some pain is having to drop the gym shorts for dress pants.  The weight of the pants (and belt, and wallet, and keys...) is uncomfortable on one of my incisions but once I am able to get myself situated in my desk chair, I am good to go.  So while I still have permission to miss work days or work short days as needed, I think I am probably back to work for good!

Tomorrow is my return visit to the transplant center for a check-in with the surgeon and for some blood work to make sure my kidney function is still where it should be.  After that I hope to pay a visit to my great friends at the News & Messenger and then head for home.  Should be a good day!

Sunday, October 3, 2010

Candi's Recovery - Another Guest Blog!

I can't begin to tell you how much Josh's gift means to me. Although I'm still very weak, I am no longer on dialysis and that is a WONDERFUL feeling! No more going to bed at 9:00 pm every night and no more waking up before dialysis is over and having to lay there until the machine signals me that I can get up. After only 12 days, the freedom is amazing - I hadn't realized how much I missed it! If I can't sleep, I can now get up, go downstairs and read (from my amazing Kindle that the folks at News & Messenger and Culpeper Star-Exponent bought me) or I can watch TV. I can also travel without taking my machine and all the supplies with me. We'll be heading to Saluda next weekend for a long weekend - I can't wait!

I can also have Diet Coke again. Colas are very high in phosphorous, as is chocolate. Phosphorous is one thing that dialysis can't handle. But now that I am no longer on dialysis, I can have my diet cokes and I can have chocolate (although those that know me know that I sneaked chocolate every now and then even while on dialysis). Now I don't have to sneak. Also, when I eat anything, I no longer have to take two very large pills called Renvela. That was tough to get used to at first - not that I enjoyed taking the Renvela - it was just hard to get out of the habit. But it's a very good habit to be able to break!

Josh is one of the most extraordinary people that I will ever know. He gave me a kidney, which is giving me my life back. What better gift could one ask for? His mom is pretty extraordinary too - she's an amazing woman who has raised an amazing son.

I haven't been able to walk very far yet - between the rain, the pain, and my lack of strength - but I'll be starting my walking regimen tomorrow after my next clinic appointment. At my last clinic appointment, I found out that my kidney levels are at 0.6! This is fantastic - even for someone without a transplant! I just pray that both Josh and I will stay this healthy the rest of our lives! My goal is to celebrate my 77th birthday with Josh's kidney still working. I know that may sound young to some of you, but that's 24 years from now! That's a lifetime to me - one that I didn't expect to have with dialysis. Thank you Josh for my life!

By the way - has anyone noticed that I still call it Josh's kidney? I guess it will always be that to me!

Thank you to all who prayed for us. Please continue to keep us both in your prayers.

Saturday, October 2, 2010

Recovery Day 10 - Driving

I just hopped in my truck (well, maybe "hopped" is a stretch - more like "I slowly climbed into my truck") to see how it felt to press the brake (this was my surgeon's suggestion). It felt fine so I drove around the block a few times (also the surgeon's suggestion).

I am now 100% confident that I can drive safely but I must admit, I was hurting a little by the time I arrived back home.  It really isn't much different than the pain that I experience after riding in a car for a while.  I don't think I would want to do anything more than a short trip at this point...but it will get me to church and back tomorrow!  This is good news for Monday as well as I should be able to drive to work and then come home if I can't make it a full day.
Last night I ventured out for my first outdoor walk.  My 11 year old niece, Tessa, "babysat" me (thanks Tessa!) on the walk to make sure I didn't end up in a ditch somewhere.  I only made it to the end of our street and back (a little over a half mile) before feeling like it was time to stop.  It hurt but still felt great to get outside!
So tomorrow I have church, Monday I have at least a half day at work, and then Tuesday I have my return to Fairfax to see the surgeon and have some bloodwork taken to make sure all is still well.  Hopefully life will be mostly back to normal by Wednesday!

Friday, October 1, 2010

Recovery Days 3 – 8

Over a week has now passed since the surgery but it honestly feels like a lot longer. I have been home now for 6 days and am definitely getting cabin fever! As crazy as it sounds, I will be thrilled when I can get back to a normal routine and return to work.

The ride home from the hospital was a bit brutal. What should have been an hour and 45 minute trip ended up being a 3 hour and 30 minute trip due to accidents. Every bump in the road was quite painful. I was definitely happy to pull into my driveway!

My first task at home was trying to figure out where to stake my tent. I tried my bed and a couch before settling on a recliner in my living room. This would become my home for the next 3 days. Lying flat felt like it was stretching the incisions which wasn’t comfortable and sitting up straight was definitely not comfortable but the recliner actually felt pretty good. After three days, I did a test run on the couch to see how I would do lying flat all night. I woke up a little more sore than when on the recliner but considered it good enough to graduate to my bed the last two nights! That has been a welcome change!

I stayed on the heavy duty pain meds for the first two days and then dropped them for just a couple of Tylenol in the morning and at night. One of the key obstacles I had to pass before I am released to drive is being off of the prescription pain meds for at least 3 days so I wanted to kick them as quickly as possible. I have really found the incision pain to be quite bearable with just Tylenol.

Sleeping has been a small challenge. The pain meds or Tylenol PM have been enough to get me to sleep pretty quickly but not enough to keep me asleep all night. I have found that I wake up often and it isn’t always easy to get back to sleep. I have been trying to stay in bed for 10+ hours to ensure I am getting enough down time. That combined with a nap or two throughout the day has really helped me keep my energy level up.

Eating has been one of the hardest things for me. I simply have not had any appetite for food. In just 9 days since surgery, I have lost another 5 pounds! I knew I needed to start forcing myself to eat and slowly but surely I have returned to my normal eating habits. I still don’t have much of an appetite but at least I can force down enough calories!

On Monday I started to work some from home. I was hoping to be able to go into the office some this week but ruled that out. Each day I have been trying to spend a little more time working and a little less time resting to build up to return to work next week. One unusual hurdle I have faced is a lack of concentration. The pain meds are no longer in my system so I can’t blame it on them. I feel a little better knowing that it is not just me - Candi is having the same issue.  Fortunately this lack of concentration has dissipated each day.

So where does this leave me? I am feeling pretty good right now. I can now sit at my desk for a pretty good chunk of the day while taking only minimal breaks. My brain is starting to function better and I am becoming more productive. The incision pain has decreased substantially. Coughing and getting up from a low position are still quite painful but most of the day the pain is minimal. The pain does increase as the day goes on and I am still worn out by the end of the day. But when I look back at the progress that I have made over the past 9 days, I can’t help but feel good about my recovery and expect that I will be 100% before long! Thanks again for all of your prayers, well wishes, flowers, and endless baskets of fruit (newly learned fact - many people assume that guys won't appreciate flowers so they send fruit baskets instead - I have a lot of fruit)!

Saturday, September 25, 2010

Hospital Recovery

The first afternoon in the hospital was fairly uneventful. I was still feeling the extreme effects of anesthesia and felt very little pain. I was put on a liquids only diet but was able to eat very little of it. I felt quite nauseous and really couldn’t get out of bed. The good news (if this can be considered good news) is that I was catheterized so I didn’t really have to get out of bed. I know I napped a good chunk of Monday evening and had my vitals regularly checked to make sure all was still well.
Wednesday was the hardest day of all. I started the day with some difficulty breathing. I basically just had some nasal drainage, but the medical team wanted to make sure I didn’t have any lung issues resulting from the surgery. They ordered a chest x-ray to take a closer look. One of the hospital workers brought in a stretcher to take me down. I hadn’t been out of bed at this point so the nurses said they would just carry me to the stretcher. I figured that was overkill, so I forced myself up and walked over to the stretcher – ouch! Adjustments to the height of the stretcher, the transport technician throwing a huge blanket right on my incision, and every crack we hit in the floor paled in comparison to the shooting pains that then came from having to sit up straight with no support while they took the x-rays. By the time I made it back to my bed, I was in pure agony.

As a pick-me-up, my Uncle John visited for much of the afternoon. Unfortunately, I wasn’t very good company. Shortly into the afternoon, the gas pains began. I had been warned that this was the worst part of abdominal surgeries. They need to pump your stomach full of gas so they have more room to move around during the surgery. They attempt to expel most of this gas but if some remains, you are in for some pain. For some reason, my gas pains didn’t hit until Wednesday afternoon but when they did hit, it was in full force. I can honestly say that I have never been in more constant pain in my life. I simply could not get comfortable or get any relief. The gas pains just moved around in my stomach, chest cavity, and even in one shoulder.

The medical team gave me various medications that “could” help with the pain but they warned me that the chances were slim. The only real way to get rid of the pain was to make it expel from the body. The only good way to make this happen is to endure the pain and get up and walk around. It doesn’t feel productive, but I had heard this from enough former transplant patients to know that it was true. The difficulty was in knowing when was the right time to get up. I didn’t want to start too early and risk falling, but I didn’t want to endure the gas pains any longer than needed either!

My first attempt was at about 11 PM Wednesday. The night nurse came in and told me I was getting up for a walk. I politely declined but she wouldn’t take no for an answer. She could tell I was hurting and knew a walk was the only way I was going to see improvement. So I stumbled out of bed. The act of getting out of bed was the most painful for me. It shot pains through my stomach and made me feel like I was going to pass out. Once I was on my feet, I instantly felt like I needed to lie back down before I fell down. The nurse had me hold my IV pole and just stand there for a minute or so. Again, I was ready to lie back down but she insisted I keep going. I made it all the way to the door in the room before she let me turn around and go back. I must say, while that walk was quite painful, it was wonderful. I was able to pass some of the gas which led to a short relief from the gas pains. This meant I was able to sleep for several hours which gave me more strength for Thursday.

I woke up ready to walk a ton on Thursday but then couldn’t find a nurse to help me walk! When my mom arrived, I set out immediately. I made it all the way around the hospital wing and was even able to stop in and say hi to Candi (although it was a very brief hello!). It was exhausting and painful but felt wonderful at the same time. I tried again a few hours later but the act of getting up left me clammy and light headed. I barely made it out of the hospital room before having to turn around and head straight back to bed. Frustrating! But I was determined and did make it around the wing two additional times on Thursday. These walks definitely helped me turn the corner. When I was no longer so focused on the gas pain, the incision pain just wasn’t that bad. It was much easier to get up and move around and even to eat. These were the signs that the doctors were looking for and which ultimately led to my being released on Friday.

The highlights of my hospital visit were the meetings with my surgeon and Candi. The surgeon explained that the surgery was an awesome success. He said my kidney was one of the best he had ever transplanted and this was a great sign for the kidney’s future in Candi. He also said that her energy level and ability to move around were a fantastic indicator of how big a success the transplant was. Seeing Candi confirmed what he said. She looked simply wonderful (a whole lot better than me!). She was upbeat, energetic, and chipper (as my mom described it). I’ll let Candi explain the numbers but that was all great news as well. These discussions were just the pick-me-ups I needed!

Prior to being released, I was told that I would need to come back 10 to 14 days after surgery to have them take another look at my incisions and help break up some of the glue holding it together. I can’t lift anything over 10 pounds for 4 weeks. Once I get off of the pain meds, I can start driving again as long as the pain of pushing the brake isn’t too great. I asked about going back to work and they are recommending I take it a little eaiser than planned next week. I had anticipated getting a ride into the office and working full days.

The surgeon loves the idea of me trying to do some work, but he is afraid I will only be able to do it in 2 – 3 hour increments. He feels there is no way I can make it a full day, which is what I would be locked into with riding with others. So I still have to figure out my work plans. I can shower (great news!) but am to avoid baths and swimming for a couple of weeks. I need to drink massive amounts of liquids and try to get back to my normal eating habits. Bowel movements are the biggest challenge donors face upon going home. The pain meds naturally constipate you and it often takes the stool softeners several days to begin working. That brings us up to date. I am taking it easy for the weekend, hoping my body will be ready to return to a somewhat more normal routine on Monday.

Many people have asked me if I would be honest about the pain levels in this post. Obviously, I have to be in order for this to be a valuable resource for future donors. But, at the same time, I don’t want to scare people away from considering donation just because of some pain. So perhaps the best way to end is simply to share my thoughts at this stage of the game.

The surgery itself was extremely painful and certainly not a fun experience. But hearing the doctors talk about how great my kidney was doing in Candi’s body and then seeing the energy that Candi gained have continued to make my decision to donate a no-brainer. The pain and inconvenience I suffered are a tiny price to pay for the freedom and future this rewards the recipient. If I had to do it all over again, I would dread the gas pains, but I would definitely make the same decision! I believe even more strongly today that kidney donation is an amazing gift that almost anyone should consider. Thank you so much for coming along for the ride! I will continue to keep you updated on our progress!!!

The Surgery

This post will walk you through the surgery from my (Josh’s) point of view. Candi will do a guest blog entry later to share her perspective regarding the surgery and hospital recovery.

I must start by saying that I received the most wonderful gift from my friends at the News & Messenger & Culpeper Star Exponent Monday night. When I arrived at the hotel, Susan (Executive Editor) was there with a gift bag with a Kindle! There were also gift cards and puzzle books – great hospital items! Thank you SOOOOOO much to all of these friends for the wonderful gifts. I even got a little teary eyed while reading all of your messages on the card!

Arriving at the hospital at 6 AM Tuesday morning, I checked in at the surgery center and filled out some paperwork. A short while later, I was called back to pre-op. I had to strip down to nothing but a hospital gown (and some cool non-slip socks) and hop up on the hospital bed they would use for the surgery. We talked with a lot of the surgery team members from doctors, to nurses, to the anesthesiologist. Just after 8 AM, I said my goodbyes (you could have one visitor with you in pre-op) and was wheeled back to the surgery room to begin anesthesia. Unfortunately, I don’t remember much between this point and when I woke up in my hospital room, but here are some of the pieces that I do know.

My surgery was performed by the surgeon I met with at the 30-day blood work. This was a good thing as I really liked him and was confident in his skill level. They did end up doing the surgery laproscopically and took out my left kidney. One conversation with the surgeon seemed to indicate that they ran into some issues taking it out. Apparently, they had to cut through more blood vessels than they anticipated which may explain why my incisions were more tender after the surgery than expected. Beyond that, the surgery seemed to go quite well from my standpoint. My incisions haven’t bled since the surgery and are no longer as tender. The surgeon has commented that they are coming along quite well.

Here are a couple pictures of the incisions.  Click on the pictures for larger versions.  I'll post some updated versions a few weeks from now to show how the healing is going.

Tuesday, September 21, 2010

Today's the Day!

We leave for the hospital in 45 minutes and the surgery is set to start at 8 AM this morning!  I go first with Candi following about an hour and a half after me.  We should be done sometime after noon.

My mom is going to be posting updates throughout the day on our Facebook page.  You should be able to view them, even if you do not have a Facebook account (it will ask you to log in at the top but if you scroll down you will see the updates).  Just go to www.Facebook.com/thekidneyproject.  Thanks and keep praying!

Monday, September 20, 2010

Kidney Walk - November 7th

Some of the wonderful O&DS folks at Media General have decided to put together a team to raise money and walk in the Kidney Walk in Richmond on November 7th in honor of Candi’s transplant (aren't they sweet?). The Kidney Walk supports the National Kidney Foundation’s efforts behind education and research of kidney disease and transplants.

I will be participating and we are hoping that Candi will be able to participate as well (it is 6 weeks after the surgery so we will have to see). If you are a Media General employee (or a friend of a Media General employee) and would like to participate, you can sign up at: http://donate.kidney.org/site/TR/Walk/Virginias?pg=entry&fr_id=2850. Just click on “Join a Team” and select Media General.  If you have any questions on the walk, feel free to ask!

Can’t walk with us but still want to help? Please consider supporting our effort through a donation to the National Kidney Foundation by going to my page here: http://donate.kidney.org/site/TR/Walk/Virginias?px=1712248&pg=personal&fr_id=2850. Every gift, big or small, helps!  If you make a donation online, the National Kidney Foundation will instantly send you a thank you email with a pdf receipt that you can use for tax purposes.

I will post some pictures from the walk after November 7th. Thanks for your support and please keep praying for a successful transplant!!!

Tuesday, September 14, 2010

7-Day-Out Visit

Today, Candi and I made our final visit to the transplant center before our September 21st transplant day. This visit had three purposes:

1. The 7-day-out blood work

2. Final blood work and EKG testing to make sure we are fit for surgery

3. Meeting with our Transplant Coordinator to go over some of the specifics for surgery week.

The 7-day-out blood work is the same test we discussed in the 30-day-out blood work post. They will send the blood samples off to Johns Hopkins and Hopkins will do a final test to make sure Candi’s blood doesn’t reject mine. This test period will obviously be a lot quicker than the last one. If they see a problem, they will typically notify the Transplant Coordinator the day before our surgery. Chances of there being a problem with this test are even slimmer than with the 30-day blood work, so most likely we will just not hear anything back until surgery day.

To make sure we are both healthy enough for the surgery, we had to undergo a few of the tests that I went through early in the testing process. The Center did another EKG to check for heart health, drew some more blood, took another urine sample, and did some final chest x-rays. One of the vials of blood they took will be used to find matching blood that could be used in the event that I need a blood transfusion the day of the transplant. They put a medical band on my wrist with a number that matches the blood sample. I cannot remove this band for any reason between now and the surgery. If it comes off, the surgery will be postponed – scary! Needless to say, I will be taking great care of the band!!!

The final step of the day was a helpful meeting with our Transplant Coordinator, Chris. She walked us through the things we need to do pre-surgery, some of the details of transplant day, and then some details surrounding our recovery. I cannot eat anything after midnight the night before the surgery. This is actually better than expected – I thought the cut off would be a lot sooner!

Warning – nastiness alert!!! I committed to include every step of the process in this blog so I guess I can’t leave this part out. One of the steps for the night before surgery is the use of a Fleet enema to clean you out. Apparently this makes the surgery a lot easier for the surgeons. Happy, happy, joy, joy.

Candi and I need to be at the hospital at 6 AM on the 21st. My surgery will begin at about 8 AM and Candi’s will follow at about 9:30 AM. We should both be done sometime after noon. The surgeons will provide updates to my mom and Candi’s husband, so we should be able to keep you guys updated with how the surgery went. We should be moved to normal rooms before the end of the day (unless they have a bed shortage in which case we will stay in the recovery area). It shouldn’t make a huge difference as it sounds like we will sleep away much of that first day.

By day 2 we should be able to get up and start walking around. Actually, it sounds like we will be kicked out of bed and forced to walk around! That will be good – I should be able to pay Candi a visit to see how she is doing. It is possible, if I am doing really well, that I could be released from the hospital Wednesday but it sounds more likely that I will be released on Thursday morning. Candi will likely be released Friday.

Chris emphasized the importance of taking care of ourselves after the surgery. For me, that means taking it easy for about a 2-week period – including no driving. I shouldn’t lift anything heavier than 10 pounds for 6 weeks in order to reduce the risk of hernia. I will need to go back to the hospital around the 10-day mark for a check-up. This visit will be to check my progress and remove the glue holding together my incision (I’ll have to resist the urge to pick at the glue!). Hopefully I will be cleared to go back to work at this check-up. I will then need to check in with my PCP at about the 6-month and 12-month marks to make sure all is still well.

With that, we had our picture taken with Chris and said our goodbyes. Here we are at the 7-day mark:

Saturday, September 11, 2010

Weight Loss

As mentioned in some of my previous posts, one of the things transplant centers really focus in on when determining whether or not you are a candidate for donation is your Body Mass Index (BMI). Candidates with a BMI of greater than 30 are generally considered ineligible for donation (there are some exceptions). Candidates with a BMI greater than 25 but less than 30 will be considered for donation but generally need to meet with a dietician to make sure they know how to maintain a healthy weight for the remainder of their lives.

As of my initial testing, I had a BMI of 27.6 so I was within the allowable range but still fell into the overweight category. I was passed through to further testing but encouraged to lose some weight before the actual surgery. I met with the transplant center’s dietician and set out to lose approximately 28 pounds before surgery day. I was sitting at 203.6 pounds and set a goal of 175 pounds. I am happy to report that as of this morning, I broke the 175 pound barrier – 10 days before surgery day!

My sister joked the other day that I should write a book called “How an Accountant Loses Weight.” As a numbers geek, I actually find losing weight to be fairly easy. I didn’t go on any fancy diet, I simply used a program that allows you to calculate your daily consumption of calories and sets a daily calorie limit for you based on your age, height, weight, activity level, and your per week weight loss goal. It’s pretty simple – consume less calories than you burn, you lose weight. I went 105 consecutive days of not once consuming more calories in a day than I burned and hit the 175 mark just in time - tomorrow we are celebrating my birthday and I plan on chowing down on my mom's spaghetti, loads of garlic bread, and some Peanut Butter Perfection from Cold Stone for dessert (which might just exceed my allowable calories for the day).

Tracking calories can be a pain in the rear but it works. Also being a numbers geek, I kept a white board chart of my weight loss to keep me motivated (I couldn’t stomach the thought of not seeing the line drop every week so I absolutely had to keep my consumption down). My BMI today is 23.7 so I now fall in the normal weight category and am set for the surgery. I will, however, need to make sure I keep my weight in check for the rest of my life (definitely don't want to fall into the greater than 30 category and should try to stay in the less than 25 category).

For those interested, you can calculate your BMI at http://www.nhlbisupport.com/bmi/. To track calories, I used an iPhone app called “Lose it.” I know others who have been successful with on-line calorie tracking programs such as www.livestrong.com and http://www.my-calorie-counter.com/.

Tuesday, September 7, 2010

30 Day Bloodwork Results!

The results are in from Johns Hopkins and we are still a go! Apparently Candi’s blood and my blood were good playmates and didn’t attack each other so they feel good about her body not rejecting my kidney. This was one of the final remaining hurdles so it feels REALLY good to get this one behind us!

Next up is the exact same test next Tuesday. They do the cross match test with the blood 30 days before the transplant and then again 7 days before the transplant as a final precaution. During this visit they will also do some pre op lab testing as well as some training so we are prepared for transplant day. With less than 2 weeks to go, it feels like we are coming down the final stretch!

Tuesday, August 24, 2010

30 Day Blood Work & Surgeon Visit

Today, I completed blood work that needs to take place about 30 days before the transplant date (which is actually only 28 days from today) and met with one of the two surgeons that will perform the transplant (Candi and I each get our own surgeon).

The blood work is what I like to call the “go / no go test.” This is the last step in the testing process. The lab drew blood from both Candi and me and will ship the vials off to Johns Hopkins University for testing. The testing will mix Candi’s blood with mine to “make sure they play well together,” as Candi likes to put it. They need to make sure that Candi doesn’t have any antibodies in her blood that will attack my kidney when it is placed in her body. The transplant center has already tested Candi’s blood many times and are confident that she has no such antibodies so they are confident that this test will not present any issues. We are both hoping they are correct! We will have to wait 10 to 14 days for the results so we will have to patiently wait until then! We go back to the lab exactly 7 days before the transplant for the same test to be performed one last time.

The second part of my visit was with the surgeon. The surgeon showed me a picture of an x-ray of my kidneys (see below). He explained that they are going to take out my left kidney (along with the attached ureter and blood vessels). They plan to use laproscopic surgery. This means they will put in a 2 inch incision below my belt line and some small holes in my stomach in which to insert tools and a camera. They will then be able to watch the surgery on a tv monitor. They will pull the two muscles there aside and pull the kidney out through this opening. This saves them from having to cut through any muscles.

If they run into any problems, they could have to switch to an open procedure which would mean a larger incision in my stomach and having to cut through the muscle. This is a very safe type of surgery but requires a longer recovery period, is more painful, and results in more scarring but this is only required in 1-2% of the surgeries they perform. I’m hoping for laproscopic!

The surgery itself will last two to three hours if we are able to go the laproscopic route. The open procedure is actually quicker since they don’t have to work around the muscle. I should be awake before they finish Candi’s surgery. There is some overlap but they won’t start on her until about the 2/3 mark in my surgery. The tough part for me is going to be waiting to hear how the surgery goes for Candi!

The surgeon echoed what I had heard earlier in terms of recovery times. I should be in the hospital for 2 to 3 days and then will need to recover from home for another 2 weeks. I should be able to work from home after the first week. If I can get completely off the pain killers and the pain isn’t too bad, I may be able to start driving and head back to work before the two week mark. This will certainly be my goal.

My final question for the surgeon was regarding how close of a match Candi and I are. From earlier conversations I had with other personnel from the Transplant Center, I was under the impression that we were a close match but I had never heard for sure. The surgeon wasn’t sure how close a match we were but stated that it really wasn’t that important any more. With recent advances in anti-rejection drugs, donors and recipients no longer need to be a close match (but they do still need to have the same blood type). It is amazing how far we have come medically the past few years!

With all of my questions answered, we moved on to signing some important legal forms. I had to state that I was aware of the risks associated with surgery, that I understood what type of surgery was going to be performed, and that I had ample time to have my questions answered. With that, I was on my way. Just 28 days until transplant!!!

Tuesday, August 17, 2010

Why Donate? A Guest Blog from Candi

This is the first guest blog from my friend Candi who I asked to make a case for why people should consider live kidney donation.

Candi's Story
I'm one of the lucky ones.  Yes, lucky - I have a good friend named Josh who is willing to be a living donor of one of his kidneys for me.  I've been on dialysis for well over 6 years now and although I've done very well on dialysis, I need a transplant.  Not only is being on dialysis inconvenient, but it also greatly increases my chance of getting heart disease and other joint and blood disorders.

Hi, my name is Candi and I have End Stage Renal Disease.  Without dialysis or a transplant, I would die.  Literally. There are two kinds of dialysis - hemodialysis (the one that most people are familiar with) and peritoneal dialysis.  I'm on the second kind of dialysis.  I have a catheter in my stomach and every night I hook up to a machine for 9 hours while the machine performs my dialysis for me.  It doesn't hurt, but after almost 7 years, I'm really tired of it.

I'm also tired of not being able to go swimming or to take a long leisurely bath.  I can take showers, but can't be in "standing" water - it can cause infection of the catheter entrance site.  It also takes me longer to hop in the shower, because I have to anchor my catheter and then clean it a special way after the shower.

Travel is another inconvenience.  When I go somewhere for just a couple of days, I not only have to pack a bag of necessities and a change of clothes, I have to pack my machine (the size of the largest suitcase you can fit in an overhead bin on a plane, with a weight of about 35 pounds), but I also have to take two bags of fluid (each 6000 ml which weigh 25 pounds total) for each night, plus drain bags, dialysis casettes, mini-caps, flexi-caps, masks, 2x2's, 4x4's, tape and about 12 prescriptions.  In other words, I arrive at the hotel looking like I'm either Paris Hilton or that I'm staying for 6 months!  In addition, I also usually have to rearrange the hotel room to accommodate the set-up required for my machine and bags of fluid.

Inconvenience aside, the biggest reason that I hope this all works out is that my risk of heart disease goes up with every year I'm on dialysis.  You see, most people with End Stage Renal Disease don't die from the kidney failure or dialysis; they die from complications to the heart and stress it puts on the body.  There's also a high risk of infection, anemia, electrolyte problems, etc.

I know things won't be perfect once I get a kidney - there will be challenges with the anti-rejection drugs and lots of doctor visits.  But I won't have to be in bed at 9pm (unless I want to!), I'll be able to take a long, leisurely bath, and I'll be able to travel without taking a U-haul.  And, because Josh is giving me a live kidney (vs. a cadaver kidney), my chances of having to go back on dialysis will be very, very low for another 15-20 years.

I've had four people try to give me a kidney - all from my workplace!  The first found out that she has the same disease I have (policystic kidneys), the second person that tried was on a medication that is bad for kidneys, and the third had a blood pressure problem.  The good news is that they all found out about their problems because of the extensive testing they went through to try to donate and are now being treated.  The bad news is that I didn't get a kidney.  I've also been called as a "backup" for kidneys 15+ times now.  I've fasted and waited, but I always got a call that said, "sorry, the kidneys went to somebody ahead of you on the list".  Now Josh has gone through most of his testing and things are looking good so far.  I'm trying very hard not to get too excited until we know for sure (which will be when I wake up from surgery and they tell me the kidney is working!), but I'm starting to believe it's real this time.

Yes, I'm one of the lucky ones.  And even if something happens with our last few tests and I don't get a kidney from Josh, he's still my hero and I'm so lucky to have such a kind, generous friend.

Sunday, August 8, 2010

The Testing - Part II

The second round of testing was a full day (hence the reason this is a VERY long post). I started with a meeting with my “advocate.” Every potential kidney donor is assigned a social worker to act on his or her behalf. The advocate is independent of the process. In my case, this meant that my advocate was a social worker in the Heart and Vascular Institute. She was knowledgeable about kidney donation but not familiar with any of the patients of the kidney Transplant Center and is, thereby, considered independent and better able to focus on my individual situation.

One of the major concerns that the advocates watch for is a potential donor that is being pressured to give. They want to be sure that people are donating for the right reasons and that they won’t regret it down the road. At any time during the process, you can tell your advocate that you do not wish to go forward with the transplant. The advocate will work with the Transplant Center and inform the recipient that the potential donor isn’t able to donate because of a medical reason. Potential donors have this option all the way up until they are put under for the transplant surgery.

My next test was a CT Scan. I had a CT Scan of my head a couple of years ago due to migraines but this CT Scan was far more extensive. In this case, the doctors needed a CT Scan with Contrast which meant pumping some dye into my system to highlight the organs. An IV was placed in my arm and the dye was injected. I had an instant warm feeling flood through my chest as the dye entered my system. I have read that some people are not real fond of CT Scans with Contrast but I thought it was pretty awesome.

I was now ready to be scanned. You lay on a bench that moves in and out of the scanner. The scanner spins around you as it captures the images and relays them to the computer. I didn’t time it, but I was probably scanned for around 15 minutes. I found it to be pretty relaxing.

After my CT Scan, I met with a nutritionist, who discussed my eating habits and emphasized the importance of living a healthy lifestyle after donation. There really aren’t any food restrictions, but it is important to remain healthy and strong to cut down on the chances of any kidney issues. She called me out on two areas that I knew were an issue. The first was my massive intake of Diet Coke (I was drinking 60-80 ounces a day at work – I have replaced that with flavored water) and my sodium intake (still working on that one – I have grown up salting almost everything). The rest of my eating habits were deemed to be okay.

In order to qualify to donate, I needed to be at a healthy weight. This was one area I was a little concerned about as I weighed around 205 pounds. That is not super heavy for a 6 foot male but isn’t exactly skinny either. The nutritionist showed me the chart and the range of weights they would accept for my height and gender went up to about 220 pounds. Ideally, I would have weighed a bit less but it wasn’t a show stopper. I committed to working on my weight before the surgery (that’s a future blog post).

From there I went on to meet with the Transplant Center Social Worker. It is this social worker’s job to determine if I am emotionally mature and responsible enough to make the decision to donate. The fear is that the potential donor is doing so on a whim or is only donating due to pressure from family or friends. The social worker asked about my job situation, family support system, and reason for wanting to donate. She wanted to be sure that I would receive the support at work that I would need with being out for a couple of weeks and then not being able to do heavy lifting for 6 weeks. Fortunately, I have a desk job and my team at work has been nothing but supportive. She asked about each of my family members and their level of support for my decision to donate (you can read the answer to that one in my “The Decision” post). We discussed who would be around after my surgery to help me out. I have a lot of family support so this part was a breeze.

The social worker went on to explain that many people have issues with their self image as a result of the scars from the surgery. I explained that I was more likely to be the guy asking everyone if they wanted to see the scar. She asked if I would feel the need to periodically stop in to see Candi to make sure that she is taking care of my kidney. I figure, once it has left my body, it is Candi’s to do with as she pleases. Of course, it helps that I know that Candi takes good care of herself so this wouldn’t be a concern anyway.

At the end, the social worker had to decide whether or not she felt I was a good candidate for kidney donation. Apparently my nuttiness didn’t come across too strongly because I was deemed a great candidate.

My final stop of the day was to visit a kidney doctor. This was a very helpful visit. The doctor had a chance to review all of my medical test results prior to the visit so this was the moment of truth. I was informed that my kidney was a great match for Candi and that I was in fantastic health. They had found nothing in their tests that would indicate that donation would be a high risk for me or Candi.

The doctor reviewed my medical history form and asked a few questions, but my history is fairly clean so it was a short question and answer period. I was then given the rest of the meeting to ask my questions. The doctor was fantastic and I walked away with a much better understanding of the process and what I could expect. He told me I should anticipate being in the hospital for 2 days after the surgery and then should plan to recuperate at home for another week and a half. Some people need as much as 6 weeks of recovery time before returning to work. However, because my job is in an office environment and I am very healthy going into the surgery, he was optimistic that I would be back to work at the end of the 2 weeks.

The doctor also took the time to explain a little more about dialysis and why live donation is so preferable to a patient receiving a cadaver kidney. He explained more about the surgical process and showed me posters of how it all worked. I was most fascinated with the fact that the recipient doesn’t have either of her kidneys removed. Instead they add the third kidney below one of the failing kidneys. For my part, they will insert a couple of instruments and a camera into small holes in my stomach. They will then deflate (that still boggles my mind) my kidney, play with the wiring, and then remove the kidney through a 2 inch incision just below my belt line. I am not one of those guys who likes to watch the medical channels on TV, but I found this to be pretty cool stuff. Overall, the surgery is fairly straight forward. After meeting with this doctor, I walked out feeling completely confident that I was making the right decision.

My next appointment would be the blood testing that takes place 30 days before surgery. This is the test where we find out if my blood plays nicely with Candi’s blood (as Candi likes to put it). As I understand it, this is where they make sure that Candi doesn’t have any antibodies in her blood that will attack my kidney after the transplant. When I go in for this testing, I will also meet with the surgeon who will perform the surgery. Now for a two month wait.

Saturday, July 24, 2010

The Testing - Part I

Potential kidney donors have to go through a testing phase to ensure that they are an acceptable match for the recipient, are healthy enough for donation, and are mentally and emotionally able to make a good decision on whether to donate. This testing phase can be done over an extended period of time or can be accelerated over a short period. I did my testing over two visits.

My first visit was a short one. I met with the transplant coordinator who explained a little more about the process. She answered my questions, checked my weight, and took my blood pressure. My body mass index (BMI) needed to fall below a certain level in order to be considered healthy enough to donate. My BMI was below the maximum but I learned that my recovery would be faster and easier if I were a little lighter (more on that at a later date).

Blood pressure is one of the critical tests. High blood pressure puts a strain on your kidneys which could cause problems down the road. At this point I had already reported that I didn’t have any high blood pressure issues but the transplant center must also register two low blood pressure readings over two visits to be absolutely sure. I have never had a problem with high blood pressure and I registered my first normal reading.

I went from there to have an electrocardiogram recorded to check my heart. They hooked a 12-lead EKG up to various parts of my body. It was a quick test but did feel like something out of a science fiction movie. From there I went to have blood work and a urinalysis performed. Great fun!  Unfortunately I didn't realize I was going to be doing the urinalysis so I had used the bathroom just before going in for the tests.  Oops!  Luckily I was able to give them just enough to get their 4 vials for the testing.

That concluded the first round of testing. I scheduled round 2 for a few weeks later.

Sunday, July 18, 2010

The Decision

Candi first told me about needing a kidney over a year ago. We were both working at a newspaper group in Northern Virginia.  I instantly felt the urge to help but I am ashamed to say that I didn’t act on that urge. I just assumed that I wouldn’t be a match and never got around to doing the research to see what was involved.  A few months later I moved back to our corporate office in Richmond which put Candi's need a little further out of my mind.
Luckily, Candi posted a message to her Facebook page last April that brought her need back to my attention. A local news program aired a story about a lady who found a live kidney donor by posting her need on Facebook. Candi figured this was worth a shot. She posted some particulars about the process and she mentioned that the first hurdle was that the donor had to have the same blood type as the recipient. She listed her blood type as O (the positive and negative don’t matter).

Well I have type O blood which got me past the “there is no way that I could possibly be a match” phase. I made up my mind that I wasn’t going to put things off any longer. Candi put me in touch with the Transplant Coordinator at Inova Transplant Center at Fairfax Hospital.

Inova sent me a packet of information on the technical side of donation and the potential risks involved. They encouraged me to go over the details with my family as they consider it very important to have a lot of family support. The biggest risks seemed to be with the surgery itself.

First, there is always a risk when going under anesthesia. I am young and very healthy so I viewed this as being a small risk. Second, there is always a risk of infection with a major incision such as is required to remove an organ.  From what I read, it sounded like this risk was minimal as long as you do a really good job of keeping up with cleaning the incision.

I found the long term risks to be a lot smaller than I expected. 97% of kidney issues affect both kidneys at the same time so only having one kidney does not greatly add to that risk.  Adding to my comfort level was the fact that kidney disease does not run in my family.  You are strongly encouraged to live as healthy a lifestyle as possible when you only have one kidney and you need to avoid some medications that are considered to be toxic to your kidneys.  Overall, though, it sounded like I wouldn't have to take any medications or change my diet.  I would be able to go on living my life much like I do now.

In reviewing all of the materials and doing some additional research online, the importance of my decision was amplified by learning more about what Candi was facing.  I learned more about the challenges of dialysis and the freedom that comes from a new kidney.  I learned about the advantages of a recipient receiving a kidney from a live donor instead of a deceased donor.  Both the short term and long term success rates were a lot higher with a live donor.  And there was the open question of how long Candi would have to wait for a kidney from a deceased donor.  She has already been waiting for 6 years.

When weighing the advantages for Candi against the potential risks, my decision seemed like a relatively easy one. The next hurdle was discussing my decision with my family. This part made me a bit nervous as I figured my family would be far more concerned than I was. I had it about ½ right. I found that the women in my family were completely supportive but the men were more concerned. I was really expecting it to be the other way around. But with a little education and some time to digest everything, my entire family warmed to the idea and gave me their blessing.

The decision was made - I was ready to proceed. I filled out the paperwork and faxed it back to Inova. I had taken the next step in the journey.

Candi & Myself

Saturday, July 17, 2010


Welcome to The Kidney Project, a blog about my journey through a live kidney donation. Let me start by saying that I am an accountant. I am in no way, shape, or form a kidney expert. This blog is not designed to be a technical resource about kidneys or transplants.  There are plenty of technical resources online.

Instead, this blog is meant to bring you along on my journey. I have found that there are not a lot of resources available for those considering becoming a live donor that describe for them what the live donor process is like for the person donating the kidney.

I have also found that there are a lot of misconceptions about donating a kidney. As my friends and coworkers have found out about my decision, I have heard everything from fears of my impending death to absolute certainty that kidney donation means that I will be on dialysis the rest of my life. Several of these individuals expressed that they would love for me to blog as I go through this process to better educate those who know nothing about kidney donation. I hope this blog will help fill both of those needs.

In the weeks that follow, I will describe how I came to the decision to donate, the steps I went through in the testing phase to find out whether or not I was a match and fit to donate, what the actual surgery was like, and then bring you along as I recover. I will also give periodic updates after recovery to report in on any longer term effects of the process. My friend Candi, the transplant recipient, has also agreed to do some guest blog entries to share the experience from her perspective.

There are three ways to keep track of new posts.  The first is to click on Follow up in the upper left hand side of the screen and new posts will pop up in your Blogger Dashboard.  This will only help if you check in with Blogger regularly.  The second way is to click on "Like" under the Find us on Facebook box on the right hand side of the blog.  New blog posts will show up on your Facebook homepage.  The final way is just to check back often.

So, once again, welcome and thanks for joining me in this journey!