Home, Sweet Home

As expected, I was admitted into the hospital on Friday during my clinic visit. The sonogram showed the artery was working fine and so was the kidney. The theory at the time of my admittance was that I was having a rejection episode that would be treated with high doses of steroids. This is a great thing for rejection but a horrible thing for blood sugar control in a diabetic. After getting into my room, the transplant doctor in charge of the hospital came in and discussed with me my bloodwork and options. He had the idea that maybe that we were dealing with a dehydration issue as opposed to a rejection issue. An IV was started and 7 hours later bloodwork was drawn. My creatin level had dropped to 2.1 from 2.4 the previous day. There still was an uncertainty about what was going on and when I spoke up and said the IV had only been in for about 7 hrs when the blood was drawn, the doctor was encouraged that dehydration was the problem. It was decided that the high dose of steroids would be put off for another day until bloodwork was taken again that night. The doctor expected the creatin to go down to about 1.5 if dehydration indeed was the issue. It came back as 1.6 so I was released about 6 hrs later with my antibiotic being switched from Bactrum to Keflex. We arrived home Sunday evening and Bruce dropped me off and went to our home fellowship. When he got home that night he found me passed out in the bathroom and was unable to arouse me with a Glucagon shot. An ambulance was called and I came to literally sitting on the toilet with 3 strangers in my bathroom. Fortunately the main person who was giving me medical help was a female and a diabetic herself. After about 2 hours, my sugar level got to about 85 and they were able to leave without taking me to the local hospital. Apparently the new kidney takes some time to really hookup and get adjusted to your body and this was the time mine decided to go full throttle. Monday night after taking a 3rd dose of the new antibiotic, my husband woke up in the middle of the night and found I was having another low blood sugar episode. After eating something and drinking a soda things went back to normal until I realized I was wheezing really bad and couldn't breathe right. A call was made to the Transplant Team and of course I was told to go to the ER or see my local doctor to make sure pneumonia had not set in. My thoughts at the time were that I was having an allergic reaction to the antibiotic. The Transplant Team called back in the afternoon and said that because it was my 3rd dose of the medication that it was an allergic reaction because they usually happen after the 2nd or 3rd dose. Another antibiotic has been prescribed and I have taken that after the transplant so hopefully I won't have the same problems. Keflex had been used many times before the transplant and I never experienced any trouble. Things change after a transplant. So if you've had a transplant remember in the hot temperatures to drink even more water than you usually do and monitor yourself with each new medication that is added post transplant.

Just When You Think Things Are Fine....

The transplant team called the other day and apparently my last blood work showed a pretty big increase in my Creatin level. It went from 1.1 to 2.2. This is not good news at all. In fact, I went into a panic and called a friend to pray with me because Bruce was unreachable at that time. At the moment there are 2 theories why this has occured. The first is that a blood pressure pill I was recently switched to could cause this change so I've stopped taking it. If it is the medication, my creatin level will return to normal and another medication will be used. The second option is that the renal artery is becoming blocked. I'm scheduled on Friday to go and have lab work, have the kidney sonogramed and see the transplant team after all that. When I see the team, they will have the results of everything and know better what is going on and what needs to be done to help save the kidney. I will post an update on Friday if they do not admit me to the hospital. If I am admitted, I'll post when I come home.

Odd Differences

Ever since the transplant, I have had 2 MAJOR cravings....vegetables and Bojangle's fried chicken. While Bojangle's has always been my favorite chicken place, vegetables were never very high up on my To Eat list. In fact, most who know Bruce and I, know that Bruce loves vegetables and since I didn't, I usually didn't take the time to cook any. Sure I ate corn, peas and string beans and occasionally broccoli smothered in cheese, but this was on rare occasions before the transplant. My surgery was on a Thursday and then Tuesday we moved into the Townhouse. That Saturday we ventured out and about in Birmingham and came upon this area called Five Points. It was very quaint and I loved it. We decided to eat at the Ruby Tuesday's there and with my entree came steamed broccoli. I tore into the broccoli immediately and oohhed and ahhhed over how delicious it was. No cheese, no salt and not even any butter that I was aware of. Bruce sat there looking at me like I had grown 2 heads! He made the comment that he thought my taste buds had been effected by the kidney disease and maybe now I would enjoy food more. I was more of the mindset that my donor had maybe loved vegetables and while surfing the net, I found that there is a phenomina called Cellular Memory. Most of the explanations I read on WHY it happens seemed to be pretty hokey and I don't buy into those theories. But I can attest to the fact that I now LOVE vegetables and make sure most nights that veggies are on the table. Salad bars were always a welcome thing for me because I did love salads at least. Those are on the "Not To Do" list now because buffets/salad bars are usually not quite the temperature that is required to serve those items and so food illnesses could be lurking for transplant patients who cannot fight off the slightest bug. And so far the best vegetable yet to me is a container of greens from "Top Of the River" in Guntersville, AL.

Before and After

I promised earlier that I would share the differences my life has been since the transplant. The list is long so I'll try and keep it rather brief and hit the highlights. First, I no longer have to see the fear in my children's eyes of the possibility of growing up without a mom. Second, energy levels! I have alot more energy now but I do tend to over estimate what I can do and end up wiped out by the afternoon. The doctors assure me this is due to doing too much too soon. Waking up from the transplant surgery, I was immediately struck with thoughts of how can I give back to the community? How I can I live the life I now have that will bring honor and glory not only to God but to the family who so willingly donated the kidney? In Saving Private Ryan, Tom Hanks dying speech admonishing Private Ryan to live a life worthy of what it cost to bring him safely home has always been a personal mantra if you will to me. Only to me it's Jesus saying it to me. Now it took on additional meaning to me. For weeks I mulled it over and over of what I could do to give back and nothing was coming. Then one day our homeschool group had a field trip where the SARTEC K-9 group came and gave a demonstration. This group is an all volunteer group who help the various agencies in looking for lost children, Alzheimer's patients and also cadaver searches. THIS WAS IT!!! This was what I felt God tell me to do. I went to K, who along with her husband, Ed, are in charge of the team. My question was "How do I volunteer?" and her response "Do you have a dog and what kind?". Her eyes lit up when it became known that we had 2 Olde English Bulldogges. She instructed me to give her a call later and we would talk. The next day I called and let her know up front about my medical situation to which she replied, "I don't see a problem, about half the team are EMT's". She then gave me her son's telephone number since he was the one in charge of training the dogs. We hung up and about 10 minutes she called back and said that she had talked to the EMT's on the team and none of them had an issue with me coming on the team. YES! Couple of days later Andy, the trainer of the team called and we set up a time when he could come by and evaluate the dogs, me and Bruce's thoughts of me being on the team. The day came and the dogs did well and we continued our discussions over lunch with Andy. His assessment was that Sneakers had the energy and the inclination to do live rescues or air scents but thought Reccee might be more suited for cadaver searches. Mother's Day the whole family attended our first practise but without our dogs. The kids and Bruce got to hide and have the dogs on the team find them. Meanwhile I got to tag along with the handlers while trying to manuever through the woods with my broken foot. Four hours later as we were driving home Bruce commented that if anyone had told him a couple years ago that I would want to spend Mother's Day in the woods, he would have said they were crazy. I have dealt with the effects of the kidney disease for so long that I had forgotten what I use to enjoy. Hiking on the Appalacian Trail was a common thing for me to do with friends. Canoeing on the Cumberland River was another enjoyment that had slipped into the recesses of my memories. This past Sunday we got to bring our dogs for the first time and see how they would do. We decided that I would be Sneakers' handler while Bruce would run Reccee in the event he ever decided to join the team also. Sneakers certainly enjoyed the freedom of being off leash in the woods! He enjoyed it a little too much. I labeled him my ADHD dog when it came time to "find" the person. He did run straight up the path the person took and stopped when he lost track of the scent. The person had made a right turn into the woods at that point so he turned to come back to me but got distracted by who knows what. Since I am also in the learning stage, I didn't know how to instruct him to go back and "find". He actually did that on his own and zeroed right in on the "lost" person. When it came time for him to come and tell me he had "found" a person, well that was when the ADHD kicked in. After a short time we got him focused again and he led me to where his "find" was. Whew! Reccee on the other hand on her first run, trotted up the path with head toward the ground moving it from side to side. Where the person stepped off the path, so did Reccee and she went into the brush where the person was hiding. Unfortunately, Reccee has problems with allergies and the outside so I don't think she has the physical constitution for search and rescue. Sneakers has the physical constitution and only time will tell if he can hone in on his focusing skills. Most importantly, the transplant team gave their blessings with me doing this as long as there would be no sky diving!

Medical Update

Friday I went to my monthly kidney transplant clinic visit. My numbers are continuing to get better except it seems my White Blood Count is extemely low and I need to consume more fluids during the day. One of the anti rejection drugs' side effect is that it lowers the WBC so the Dr. decreased my Cellcept to 3 capsules 2x a day. I was a little anxious about the visit because I had been feeling extremely fatigued the past couple of weeks. Apparently I am expecting too much and too soon after surgery. To quote the Dr. "You're only 3 months out from the transplant! You're still recovering from major surgery!" But what concerned me was that I now seemed more tired than I had since the surgery. But my voice of reason (my hubby) started listing the things I am now doing on a daily basis that I haven't done in years. Ok, ok I had unrealistic expectations but when you go from feeling really, really bad to this good (even if it's not yet at a 100% recovery) you just start to do things. One thing that has been weighing on my shoulders is my Thank You letter to my donor family. I have thought and prayed about what to say since my surgery. Somehow the words Thank You didn't seem to be enough. Last weekend I attended a scrapbooking retreat and was finally able to sit down and try and put my thoughts and feelings into a letter. Then since I make cards, I had to find an example of just the "right" card to make which with a friend's help I did. To any of you who have received a transplant, I encourage you to write or send a card to your donor family. One of my fellow transplant friends had a distant relative pass away in a freak accident and they made the gracious gift of life by donating what could be used. They made the comment to my friend that they would like to know who received his organs. My friend drove to the hospital and found out who had received transplants on the date of the man's death. He visited the patients and told them he was a kidney receipent and just encouraged them to write their letters to the donor family without letting on that he knew them. Unfortunately he was escorted out of the hospital when the nurses discovered what was happening.
While I was down in Birmingham I ran into some of my fellow transplantees and it was like old home week because we ran into each other at the Lab. All the transplant patients gathered at the Lab every morning around 6:00 am to have their daily blood drawn. Didn't matter if you were a kidney, liver or heart patient, you were there. There was a little girl who was about 5 years old that had just had a heart transplant and she too had to have her arm stuck every morning. The Lab people tried to do it as quick and painless as possible because your emotions just went out to this little girl and her parents. At least she had been through the toughest part and was on the downhill slide. Let me give you a little information on what the heart transplant patients have to go through. Because the heart cannot survive too long out of the body, heart patients once they get so far up on the list have to move into the Townhouse so they are right there when the heart becomes available. The apartments in the Townhouse are about the size of an old college dorm room. One family we met who was leaving the Townhouse had been there 7 months between waiting for the heart and the recovery time. We met a 27 yr old man who was living in the Townhouse waiting for a heart that matched to come in. Last I heard, he's still waiting. So again I'll give another plug.....Become an organ donor if you haven't already! It really does make a difference to someone and I'll go into what a difference it's made in my life in another post.

It's Been A While

Yes, it's been awhile since I last wrote something. The truth of the matter is things have gone along well and I'm out and about enjoying life again! My husband always said that I didn't realize how bad I was feeling and wouldn't know until I got my new kidney and felt good again. He was right! I do feel so much better except for lately I'm really struggling with exhaustion. This could be because I'm attempting to do too much or simply part of the recovery process. Unfortunately it could also mean a urinary infection or the CMV virus has become active. Neither of these as far as I know are tremendous obstacles and tests are being conducted to see if either of these possibilities is real. I'm down to once a week blood work and my veins are very happy about that! The women up at the Madison Medical Mall are just great and they know my arms now. While I was in the hospital, it was brought to my attention that I should look into getting SSI disability. I haven't worked since 1995 and I stopped working because of the toll it was taking on my body and health but the thought never crossed my mind to apply for disability. I thought that was for elderly people. My husband and I met with a lawyer and found that I should have applied back when I quit or as late as 2000. Because I didn't, it would be a much tougher case to win and we decided not to pursue this course. So a word to those out there who may just be getting on a transplant list, check into the possibility of applying for SSI disability. My friends, Guy and Ann continue to do well and have seem one another a couple of times now and even had lunch one day. My next visit to Birmingham will be May 23rd so I will definitely see Guy then and possibly Ann as well if she has a clinic appointment that day also. This past weekend I was sorting clean laundry and tripped over our rug and broke my foot. I was relieved when I didn't hit the floor and remained upright but I had heard the "crack" and knew I had broken something. It's actually where the big toe joins the plate of the foot. The family made a trip to the Urgent Care on Saturday night and I followed up on Monday with my podiatrist, Dr. Mark Middenberg with Whitesburg Podiatry. He has taken care of many foot related issues with me and I highly recommend him. His main concern was that the tendon is attached where the fracture is and wanted to make sure the tendon hadn't snapped off or tore. Thank God it hadn't! To those that know me, it's not uncommon to see me in a surgical shoe or even boot. I've lost count at how many times I've broken my toes or feet. Usually it's because of tripping over a dog or stubbing my foot on a chair. This is the second time I've tripped over something. Some people who are diabetics tend to lose feeling in their feet after having diabetes for so many years. While I have some neuropathy (nerve damage which means loss of feeling) I still have great circulation in my feet and still have feeling in my feet. Out of all the breaks, this I would have to say has been the most painful but my foot is a wonderful array of colors in purple and black. Slowly but surely I'm getting the housework done that was neglected for so long because of how I felt. Laundry is being done on a regular basis and I've cooked dinner almost every night since returning home from the hospital. These both are major accomplishments for me. My mentality before was that I didn't have emotional engery to put thought into what to fix for dinner or the physical energy to actually fix the dinner so we ate out alot. My one son who I would classify as a picky eater has not complained a bit about not going out to eat and my other son who eats everything under the sun, blesses me with his pure enjoyment of what he's eating. I love cookbooks and collect them. Cookbooks made by different churches I find are the best. So I've been getting them out now and just glance through and see what "pops out" to me. Saturday we celebrated my birthday and for the first time I didn't have to wonder if I would be around for my next birthday. Age has never been an issue with me. I'm proud to have lived 48 years and this birthday was very special with my new lease on life. Now it's time for my public service announcement......If you've not considered being an organ donor, please do! The waiting list in Alabama has now reached to a 7 year wait. Personally, I've know 4 people who passed away while waiting for a kidney. There is a shirt that I want to get that says "Please become an organ donor, Heaven knows we need them here.

Arriving at UAB

After my phone call from the Organ Center telling me they had a possible match, we were on a time table. The call came in at 9:35 PM and we were told to be at the hospital by 2:00 AM. I know most people would think that you wouldn't need that much time to arrive but you really do. There are many things at home that need to be done in the event that the surgery does take place like paying bills, last minute packing and taking a shower. But most importantly for me it was making sure my 2 sons would be taken care of until my sister, Jessi arrived from New Jersey. We finally got in the car and headed out. The first stop was the gas station to fill the tank and get a drink. If the surgery is a go, I figured I had until midnight to eat and drink and I was gonna take full advantage of that. Then the next stop was McDonald's to grab a bite to eat because who knew when I would be able to eat again. We arrived at UAB at 1:15 AM. This time we were told to go to the ER and they would take care of getting me admitted. Right away I picked up on the people's sense of urgency which was not there with my other visit. By 2:00 AM I was in my room. Then the flurry of people coming in began. My nurse, the resident doctor for the kidney transplant patients and a couple more medical people. The next thing I know, their giving me a surgery time and I haven't had my blood drawn yet to see if it matches the donor. At 4:00 AM my blood was drawn and I had a 5:30 AM pick up time to head down to surgery. Again the sense of urgency with everyone was very apparent. It took 3 attempts at getting my blood drawn and the IV started but it wasn't bad. One of the attempts did leave a black and purple bruise that lingered for 3 weeks. I arrived in pre OP with the news that my blood work wasn't back yet so there would be a wait until the results came in. Out of the 2 surgeries being done, I was to go first because the other man who was receiving the other kidney had to go to dialysis first before his surgery. They kept calling the lab about every 15 minutes to see if the result was in and finally at about 8:00 AM we found out it was a go and within 5 minutes they were taking me back to the OR. I was introduced to all the team members who were there. The only 2 people who weren't there was the aniesiologist (sp?) and the surgeon and they had been paged. One of my nurses stood there and held my hand and stroked my arm while they were getting everything prepared like putting the leads on my body for the different monitors. She would tell me everything that was going on around me. Everyone was so friendly and warm and I felt completely at ease. The aniesiologist came in and commented that I hadn't received any Vercet yet and their reply was "Look at her, she hasn't needed anything to calm down". He looked at my BP and other monitors and then at me. I gave him a big smile and he asked what was wrong with me, that most people were nervouse wrecks by that point. I told him I had been in good hands and there was no need to be a nervous wreck. He then sat down told me to breathe deep and the next think I know, I'm waking up in a lot of pain thinking that no time at all had past, even though it was about 4 hours. I had the ability to push a button and get Morphene. The problem was my fingers were numb and I couldn't really push the button with some effort but I finally figured a way to do so and voila no more pain. Normally after surgery you are taken to Surgical ICU. I came through surgery so well that I went directly to step down. Apparently there was some concern at first because I wasn't making urine right away. When they rolled me into step down was when I was able to first see my hubby, Bruce. They said as soon as I saw him, my kidney started pumping out urine making up for lost time. I spent less than 16 hours in step down and walked to my regular room. My nurse in step down said that she was amazed how quickly I recovered. People without diabetes didn't recover that quickly and that it was quite amazing that someone with diabetes was able to rebound so quickly. Of course they were pushing the fluids through the IV rather quickly to help the kidney come on board. The first 3 days I had a catheter in so I was really unaware of how well the kidney was doing. More details later.