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!
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