Giving Thanks

This holiday season there is so much to be thankful for. It was shortly before this time last year when I started to really feel the effects of End Stage Renal Disease. For many years I had the thought that I would NOT do dialysis. I couldn't see myself dependant on a machine to prolong what would be the inevitable. Then Bruce and I were blessed to adopt our first son, Aaron when he was only 6 weeks old and my attitudes about dialysis started changing. We were greatly blessed again with the ability to adopt again from the same birth mother just 20 months later and any doubts about dialysis were now completely gone. My main drive now was to live to see my boys grow up and have families of their own. Last year when I started feeling so bad, I actually looked forward to starting dialysis so that I could feel better and hopefully live life with my kids. It's amazing when I look back and see the journey our lives have taken over the last 24 years when the news first came about my kidney failure. So of course, I'm thankful for life and health this holiday season.
Bruce's dad had an emergency triple bypass the Friday before Thanksgiving. This came so suddenly and unexpectedly. Going into the surgery Friday evening the prognosis was not very promising but about 9 hours later the surgery was finished and Bruce's dad had made it through. His progress has been remarkable and the family is praising God for His healing hand and mercy. Bruce was able to travel on Thanksgiving up to Virginia to be with his family and visit with his dad and celebrate Dad's birthday on Sunday. So I'm very thankful for Lee's recovery.
Bruce has been pursuing a doctorate degree and Tuesday before Thanksgiving, he had his last written exam (hopefully his last). This Friday will be his oral defense and if his committee likes what they see, he will be told to write up the dissertation. Writing the dissertation should not be that big of a deal because he has written sections already and is great at putting thoughts onto paper. When Bruce studies, he secludes himself and stays in the books every waking hour he is not at work. He even took a couple days off from work right before the test to study. The kids and I both are enjoying having him out of the room and with us. So that's another thing I'm thankful for.
As mentioned in an earlier post, I've been working with the Sartec K-9 Unit which does search and rescues of lost kids, Alzheimer's patients and even cadaver recovery. We had our first of many parades last night with the dogs. My kids got to ride on the float and be part of a parade. It never occured to me how something like that could bring such joy to their faces. There we sat in low 30 degree weather with the rain/sleet/snow starting and stopping riding through the streets of Decatur and they had the best time of waving and telling people Merry Christmas. Thankfully we had about 3-4 layers of clothes on so the temperature never really became an issue with us. Four of our team walked beside the float with their dogs and as we made our way along the parade route I was struck with awe at what these dogs have done and what others are training to do. Of course the St. Bernard, Toby is always a big crowd pleaser. I heard many kids during the night yelling out, "There's Toby!!". Those kids have met Toby over the course of their young lives because of Safety Education classes the team does or some other class they have attended with him. So most of all I'm thankful to be able to see my kids having a great time with something as simple as a parade and the excitement of a child as they recognize one of God's creations who has impacted their life.
What were you reminded of this Thanksgiving to be grateful for?

Check Up at the Clinic

After my hospital stay in June, I had to return to the clinic 2 weeks to make sure things were still going in the right direction. At that time, they had given me a 3 month leash where I didn't need to return until 3 months later. I had that visit on October 17 and everything looked great. The doctor commented that I had a great kidney and should last me many, many years as long as I took my medicines. Unfortunately, many people do stop or alter they medicine routines for various reasons and this leads to rejections. Some people get tired of taking all the pills, some can no longer afford the cost of the medicines because Medicare is no longer their primary insurance carrier but now is classified as their secondary carrier. I assured the doctor that after having taken all the injections over the years being a diabetic, taking some pills was much preferred and that our medical insurance was great for prescription coverage. This visit also coincided with my 9 month anniversary of receiving the kidney. I'm amazed at the progression of feeling so good. Right after the surgery I felt an immediate difference but knew there was a ways to go or at least I hoped there would be more improvement. Lack of energy was still to be dealt with but it was more due to doing alot more things and being exhausted than having no energy to do anything. After I hit the 3 month mark I realized that things were alot better than than before. I still had energy issues but I knew again they were due to doing alot more things in the day than I had done in years. Around the 6 month mark there was another realization of how great I was feeling. Then the pneumonia hit and that set me back aways. When I went to the clinic I was still dealing with the after effects of the pneumonia and was told by the doctor to not be so frustrated with myself. Pneumonia is a serious illness and recent transplant patients will take even longer to completely get over something such as this. The doctor said for me to continue my 2x a month blood draws until December when I could go to monthly. Yee Haw!!!!! I will go next week for bloodwork and then it's a monthly visit for me. With this last visit the doctor wanted to add an ace inhibitor blood pressure medicine, Lisinopril. This is a common thing for diabetics to be taking because it acts as a buffer for the kidneys and helps prevent scarring in the kidneys from the effects of high blood sugar levels. Apparently my body doesn't see it as a "helper". Two weeks after taking the medicine my creatine shot up from 1.3 to 2.1 not a good sign. The doctors believed it was due to the Lisinopril so they had me stop taking it. Two weeks with not taking it and my creatine dropped down to 1.1 which is in the normal limits of someone who has never had kidney issues. February will mark my 1 year anniversary so the doctor scheduled me to return to the clinic then. If all continues to go well at that time I'll be given a 6 month leash and after that a yearly leash. It's hard to believe it's been 10 months now since the surgery. Time is flying by so quickly but it is because my days are so full now of homeschooling the kids, field trips, gymnastics and the Search and Rescue SARTEC training. There is no way I could even have hoped to think about doing all this before the surgery. I have heard from my donor's family and hope to meet with them one day as they share their memories of their loved one. Every day is a gift and whether we have received a transplant or not we need to be thankful and grateful for each and every day to the Lord. Have a Happy Thanksgiving!

8 Months and Counting.....

I had my transplant clinic visit today. It's been 8 months since the transplant and I can't believe how the time has flown! All my numbers showed that the new kidney is doing GREAT!! Yeah God! My Creatine is at 1.5 which has been lower but is due mainly to the elevated Prograf levels of the last 2 months. It's coming down and the doctors are pleased and say it should come down some more with time as long as my Prograf level remains in the normal range. The doctor told me today that my kidney should last me a good long time as long as I take my medicine. He stressed that a couple of times. I am amazed at the number of people who for one reason or another change their own medicine routines. Medicare after a transplant is practically an automatic thing and for 3 years it becomes your primary insurance and the medical insurance you had before the transplant is known as your secondary. After 3 years this changes and Medicare becomes secondary with your personal insurance as primary. Apparently under Medicare you can choose to option into the Prescription plan and this saves people alot of money on the medications. When your personal insurance becomes primary if a prescription plan is not included or the benefits for medicines aren't that great, the cost becomes prohibitive of getting the medicines. People try and space out their meds so that instead of taking the meds 2x a day they try 1x a day or even once every other day. After a time rejection becomes an issue and a good number of people permanently lose the kidney. If you are a person who is struggling with this issue of trying to make your medicines stretch. DON'T!!!!!!!!!!! There are programs I am told available to help with the cost of medicine. We are blessed in the fact that we have good insurance and didn't see the need to add the Medicare plan. We are still trying to get me optioned out of Medicare and I'm keeping my fingers crossed that it will resolve smoothly. Currently our insurance has sent 2 letters saying they have received notification of me having another insurance. We keep telling them we have not taken the Medicare plan and of course have never used it either. I'm hopeful this will all work out eventually. The doctor said some people just get tired of taking all those pills and stop. I reassured him I had taken needles everyday for over 40 years (well minus the time on the insulin pump) and that taking pills was nothing compared to that and I had waited too long for this kidney to let it just go by the wayside. UAB has added another kidney transplant surgeon so their total is 4 now with the 2 liver transplant surgeons filling in when needed. On one hand this is great news for Alabama but on the other hand it's sad that their is such a need for another surgeon. Alabama ranks 4th in the nation for Chronic Kidney Disease patients.

This visit was what I called my 3 month leash. It had been 3 months since I had last been seen by the transplant clinic. The doctor gave me a 4 month leash so that my next visit would coincide with my 1 year mark. After that if all is still going well I'll go to a 6 month leash and then yearly. And the best news yet is I'm to have my blood drawn every other week thru November and in December I can go to monthly!! YAY!!!!!

My fellow Musketeers are all doing well and I got to have lunch with one of them today while in Birmingham. The other Musketeer (Ann) had her 6 week clinic visit on Wednesday and was told depending on the CAT scan results that she may be able to stop her every other day infusion therapy for the mold in her lungs. What great news for Ann!

Because of the kids having classes today, Bruce was not able to go with me to Birmingham. I really miss him when he's not there on these trips. The last 13 years we have traveled together so many times to Birmingham that when I see the skyline of the city and he's not with me it's very sad. After being evaluated for a transplant 10 years ago, everytime we would drive past the hospital parking garage I would think to myself, "One day we'll driving into there for my transplant". As I came upon the garage today I was overcome with tears of graditude and relief. When you go through stressful times in your life, mine fields are set up and sometimes you never know when you will hit a trip wire to set off the emotions of that time. Obviously the UAB Hospital 4th Avenue Parking Garage was a trip wire for me today.

Pneumonia after a Transplant

Pneumonia is one thing that we were warned about after the transplant. After surgery I was given a spirometer (sp?) and told to use it a couple of times everyday. It's a plastic thing with a movable piece inside a tube. You blow into a flexible piece of tubing that sticks out of the equipment and the movable piece is thrust up the tube depending on how much air capacity is in your lungs. This exercise causes deep breathing which helps prevent pneumonia while recovering from surgery. When someone becomes very sedentary (inactive), pneumonia is a real threat. We were told repeatedly to be on the lookout for signs of pneumonia because of our compromised immune system with the antirejection drugs. Low grade fevers, difficulty breathing, coughing being the biggest things to monitor. Unfortunately, I came down with a sinus infection just before Labor Day weekend and by Labor Day I knew it had gone into the dreaded pneumonia. First thing Tuesday morning I went to my family physician and a chest xray confirmed that I did indeed have pneumonia. The antibiotic Levequan was prescribed as well as a cough syrup that contained antihistamines and decongestant. The cough syrup seemed to work for me but I had to really make sure I got my fluids in. The decongestant drys up your nose as well as the other parts of your body. Blood work did show an elevation in my Creatine level while taking the cough syrup but interesting something else happened during that time in which it is still not certain if it is related. One of the tests they do with the bloodwork is check my Prograf levels which is an antirejection drug. High levels of Prograf can damage the new kidney and elevate the Creatine level. Originally I had been taking 6mg of Prograf 2x a day and after the first elevated test was cut back to 5mg 2x a day. Two weeks later the bloodwork still showed an elevated Creatine but was not as high as before. So now I'm on 4mg 2x a day. Today I went back for a recheck on the pneumonia and it is clearing but not gone. It has almost been a month now and even though I had the knowledge in my head that it would take longer to recover from illnesses, living through it is quite different. My expectations have been what they were in the past with illnesses. Seems like it has taken me longer to recover from the pneumonia than the transplant surgery. So for those of you out there with transplant on the horizon or in the near past or future, take precautions! If one of your family members gets sick with anything, insist they go to the doctor and have them explain the situation. I tried staying away from the family member who was sick which may have worked had I not been on antirejection drugs. Plus I was under the assumption that sinus infections aren't contagious. That all depends on what caused the sinus infection. Cotton fields surround our community and every year when the defoiliation process starts, sinus problems abound in the community. Bloodwork should be taken today and we'll see if the Prograf level has come down some more and what the Creatine level is now.

Been Awhile

I'm happy to report that things are still going well. Blood work is done every 2 weeks now and my next visit to the clinic is in October. After that I will hopefully go to once a month blood work. I didn't realize how long it's been since I last posted until Vicky contacted me about reading my blog. Vicky, that is great that your numbers are holding steady. Yes diabetes is the reason my kidneys failed. My total function had held at a GFR of 22-24 for years. This was always scary because the doctor kept telling me I would hit a wall and just drop. Had gotten down to the 17 level and met with a surgeon who was to place a PD catheter but decided to hold off because I was not exibiting any symptoms. The metallic taste in the mouth, difficulty breathing and sleeping alot without feeling rested and itchy skin. I know you have other issues that cause some of these symptoms. On Novermber 11, I became ill with a sinus infection and that is when my function "hit the wall" and dropped to a GFR of 10. At the time of the transplant it was down to a 6. Dialysis had always scared me but when I got down to the GFR of 10, I was ready for anything that could help me feel better. My friend Ann had originally been diagnosed with Good Pasteur's (sp?). They tested her to make sure it was inactive at the time of transplant and it showed that it was indeed inactive. Problem was she didnt have that disease, she had Wegner's which has symptoms just like Good Pasteur's. I was told I'd be in the townhouse from 3 - 6 wks. It ended up being 2 wks and 4 days. Both of my friends, Ann and Guy did not have to have anyone stay with them. I did because of my swings in bloodsugars. My call for the kidney came the day before I was to start daily peritoneal dialysis. The dialysets of 26 cartons was to be delivered that Saturday. For everyone who has been reading this blog, please keep Vicky in your prayers as she starts the same journey.

Pam

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.

Home Again

My last post was when I had gotten another call about a kidney. That kidney was a match and on Valentine's Day, I received my new kidney and the gift of life! Praise God. The last 3 weeks has been amazing and I'm doing great. I met 2 friends who also received new kidneys. The 3 of us along with my hubby, hung out together. Whenever one of us had a clinic visit, we all went. Our transplant coordinator knew if he wanted to reach one of us all he had to do was call anyone of the 3. He dubbed us the Three Musketeers. Guy and I got to go home for good yesterday while our friend Anne was hospitalized the day before and remains there for hopefully not too long. I ask that you remember Anne in your prayers. The disease that took out her native kidneys has already attacked her new kidney but the doctors are certain they can stop the progress of this. I will post at a later date some of the details of my last 3 weeks.

I've Gotten Another Call!

Tonight I received another call for a possible kidney. Bruce and I are preparing to take off. After I get in my room at the hospital, they will draw blood and then a series of tests will be performed on my blood and the donor's blood. This takes about 10 hours and the outcome of these tests determines whether or not this kidney will work for me. Stay tuned, it may be awhile before I can post again if all goes well.

Theme Song

Music has always played a very big part in mine and my husband's lives. Besides Stryper and Petra ( I know, I'm dating myself) Third Day was my all time favorite until recently. Casting Crowns has reached Third Day's level with me. This song was sung in our church service when the Katrina victims came to town and has resurfaced on the radio lately and really speaks to me at this stage in my life.

Praise You In This Storm - Casting Crowns

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll praise You in this storm
And I will lift my hands
For You are who you are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I'll praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from
My help comes from the Lord
The Maker of Heaven and Earth

Some Milestones

Yesterday was the first time I was allowed to shower instead of a sponge bath. Boy did that feel good! The euphoria over being able to wash my hair carried over to when I had to change my bandaging. I did it without even thinking about what I was doing! It seems it's becoming second nature to me now. The order in which I have to wash my hands to make sure they're clean (palms, backs, nails, cuticlea, thumb, fingers, wrists, backs and palms), setting out the supplies first, ripping some tape off to have it ready, oh and I have to put on a surgical mask also. Seems a little extreme doesn't it? But this prepares you for when you start to uncap your catheter. A new cap must be put on each time you take one off. The head of the Dialysis Center called yesterday and postponed my start of training until Tuesday. That gives me one extra day of maybe a phone call coming in :) Someone recently told me that another person said they couldn't pray for me because they would be praying for someone to die. After my initial shock of actually being told this, I explained that I would never advocate praying for someone to die just so I could get a kidney. My prayer has always been that God would find a match out of the people who had died and make it happen. The number of people who are actually organ donors is pretty low. Some family members have a hard time with giving the OK to use their loved one's organs in their time of grief. Who can't understand that? The first thing our family does when these phone calls have come in is pray for the family who has lost a loved one. Our hearts go out to the unknown family members who are grieving. We pray for peace and comfort to them and that they feel the presence of God's love surrounding them. I can honestly say my thoughts are more with that family than with my situation at that time. My mind can't even grasp that thought of God making that person die so I could get their kidney. It breaks my heart that some people can attribute such actions to our Heavenly Father. Free will decisions of drinking while driving, or taking pills and then driving or even speeding contribute to the opportunity of death. Often times innocent people are affected by another's free will choice.

Reality Check #2

Yesterday was my weekly visit to the Dialysis Center. Usually there aren't any other patients in the waiting area and I don't wait very long before being led back to the treatment area. Yesterday was very different. A woman came in and signed the log in sheet. She appeared to be younger than myself and I felt brave enough to start a conversation with her. I asked how long she had been doing PD (peritoneal dialysis) and she said since March. She then went on to tell me how rough life was for her at the moment. A single mother of a teenage boy and girl, a boyfriend who was cheating on her and she was in the process of stalking him and taking pictures with her cell phone. Trying to veer the conversation away from her boyfriend situation, I asked if she had ever done hemodialysis. She told me they had operated to put the access in for hemo but that it had closed up the day after surgery and PD was the only option available to her. When I asked her if she was on the transplant list, her reply shocked me. She said she was tired of dealing with life and her situation and she wanted to just stop the PD and let nature take it's course and that she had told the doctors she didn't want to go on the list. WOW. After getting her catheter inserted she ran away for 6 months until the doctors finally caught up with her. And here I thought I was bad at putting my head in the sand! My heart broke as she told me that everyday she asks God why He is mad at her. I reassured her that God was not mad at her and had not brought this on her. She wasn't ready to hear that and went up to the receptionist to recount the latest on the boyfriend situation. The comment was made she was gonna get locked up for doing something stupid eventually about this guy. By this time, I'm thinking "Please God, get me back in the treatment area and don't let me be here if she decides to bring a gun!" Her normal appointments are every Thursday and I questioned her why she came every week. Her response again surprised me. She said she doesn't do it right so she had to come weekly. My first thought was, WHY? I don't know what she meant by she wasn't doing it right but surely after almost a year that could've been worked out. When they called me back, my mind was so full of the conversation and hopelessness of her that I walked in without a moment's hesitation, got weighed and sat in my treatment chair and looked up. Caddy corner from me was a person on hemodialysis. The nurses that surrounded that and one other hemodialysis patient were decked out in lab coats that reached the ground and clear plastic visors that remind me of welder masks. At this point my head started to spin but then my nurse, Sandra came in and shut the curtain. I knew God was showing me through all of this of just how good I have it. Never has it come to my mind to ask God why me? I know that in the Garden of Eden when sin entered the world, a dominoe effect was started of things breaking down. Being involved in the charismatic church for awhile was always interesting. I can't tell you how many times I was told that I either didn't have enough faith to be healed or I had sin in my life preventing me from being healed. It didn't seem to matter that I had been healed of some of the effects of diabetes like blindness being the most dramatic. Realization started to set in with me that miracles sometimes come instantenously but sometimes they come over time. I dealt with the blindness for about a year and at one point needed surgery because of my retina starting to detach. What happens with diabetics is that over time they develope new blood vessels in their retinas but they are very weak. These vessels start to leak a fluid before they hemmorage. Laser treatments are given to help sear the new vessels into not hemmoraging. Both of my eyes continously hemmoraged for about 9 months. Eventually the blood will become reabsorbed into the macula but poses the threat of pooling to the point where the weight of the blood detaches your retina. I had gotten to that point and surgery was scheduled. A partner at the law firm I worked at had taken an interest in my situation. He wanted me to get a second opinion before I went ahead with the surgery. Little did I know that he had scheduled this second opinion with the world's greatest eye surgeon who had operated on Sugar Ray Leonard and the head of the U.S.S.R. at the time. Before this second opinion appointment my attitude was one of God you can just take this away from me. The surgery would be performed while I was awake and they would insert a needle into each of my eyes and suction out the blood. Need I say more after the needle part? That was enough to have me kicking and screaming at the thought. Somewhere along the way I realized that God worked miracles through medical science too. That it was no less miraculous to be healed based on knowledge that doctors had. That ultimately God had given that knowledge whether they admitted to it or not. A peace came over me as I realized this and I was ready to go into that operation. It was at that time I had my miraculous, instant healing. When I showed up for my second opinion appointment with copies of all the tests that had been done previously, the team of doctors looked at the records and agreed that surgery was needed but wanted to see how things had progressed since the last set of tests. They dialated my eyes and put on what I call their head gear with a bright light and a hand held super magnifier and they began to look. Medical terminology started flowing excitedly out of these men and I didn't understand a word. But there was an excitement in the air. Finally after 3 doctors looked and conferred they told me that my eyes no longer resembled what the previous tests were showing. My retina was attached with no signs of tearing and the blood was being reabsorbed at an enormous rate. No surgery was needed. Praise God! I still see a retina specialist every year and each time come away with the news that new vessels are no longer growing in my eyes and the specialist doesn't believe I'll have any more issues. Feeling sorry for myself is rarely an issue that I have to deal with. Today I was again reminded of just how blessed I am even if I do have to do dialysis. With God all things are possible.

A Lesson Not Yet Learned

Geez I feel really stupid. Yesterday I wrote about learning to accept people's help. This morning I was in a situation that really did need assistance and I STILL turned it down. Bruce and the kids had gone to my youngest son, Samuel's, gymnastics meet in Georgia last night. I woke up later than usual this morning and was sitting down watching the dog training video. My blood sugar dropped so low that I became very disoriented. When this happens, my brain knows that I need to get sugar but the ability to actually do it is greatly impaired. My vision gets pretty disjointed and it sort of morphs things. I managed to stumble to the refrigerator but couldn't recognize what it was I needed to eat. There was an Arby's bag with half of sub in it and the Arby's hat finally registered in my incoherent mind (I'm thinking Arby's commercial brings new meaning to me now). I grabbed the bag and stumbled to the table and ate what was left of the sub. Still being confused I went back to the refrigerator and tried to find something with sugar. The bottle of Hershey's syrup caught my eye and I was relieved to see we had milk so I emptied what was left of the syrup into a glass of milk. Let me say that I have never truly liked chocolate milk but at this point it wasn't a matter of what I liked or didn't. The phone rang and I answered it. It was my friend who owns Butterbean who was to come for a visit later today calling to say she wasn't feeling well. She picked up immediately that something was terribly wrong with me and offered to come over. I of course refused her help. She questioned me about what was going on and I tried to tell her as best as I could in my condition but I reassured her I was getting better and drinking chocolate milk as we spoke. She told me she was either going to come over or call 911. Well the threat of the 911 call caused me to drink the milk faster but I still didn't want her to come over and help. She told me to hang up the phone, continue eating and call her back in 20 minutes and if I didn't, the ambulance would be called. Threat of an ambulance cut through the fog in my mind and helped to bring me around even more. I called her back to make sure she didn't call 911 and she said that I sounded better but I was still slurring my speech. Why didn't I accept her help of coming over? We kept talking and apparently as we talked she could tell I was improving. At one point she offered to have food sent over and of course I refused again (When am I gonna learn?!?) After one of these insulin shock episodes, 2 things happen. One is that during it the sweat that pours off me literally soaks my clothes and I start shiverring because my body temp has also dropped low. That is part of the body's reaction to shock. The other thing that happens is that I get very sleepy. So my wise friend says "I've been craving Steak Out when do you want it delivered now or later after you've taken a nap?" The issue of not accepting help was hitting me at that moment and I finally agreed to her help. She told me to take a nap and she would order Steak Out for both of us when I woke up. Thank God for people like her who care enough not to take no for an answer and are more stubborn than myself.

I Did It!

Last night I changed my bandaging. Bruce stood behind me to help keep me steady while my head was spinning. But I did it! There was apparently no fresh bleeding from the handling of the dogs. We did our homework assignment with them and invited our friends Bassett Hound, Aden to come over for a visit. Now Aden is the sweetest, mild mannered dog I've ever met. He can become a little nervous at times but it shows up as him wanting more affection/attention. His worst times ever are with thunder storms and yes, we had some thunder towards the end of the visit. Our friend Preston who owns Aden was amazed at the difference in our dog's attitudes. Yes, we did have corrections to make but for the most part they laid on their beds while Aden had free roam of the house. Add in 3 war whooping boys to the mix and there were plenty of distractions to tempt the dogs. Sneakers seemed most tempted by the sound of the boys having a grand old time without him, but eventually he settled in with an occasional attempt of pushing his boundaries. After almost 3 hours of "visiting" our dogs had reached their max and needed their crates to just chill and sleep and not be required to do anything. The next test is having an enery filled English Bulldog named Butterbean come over tomorrow night. This will be a challenge because Sneakers LOVES to romp around our backyard with Butterbean. Reccee has not met Butterbean and she seems a bit protective of Sneakers. Last night with Aden was the first time we had another dog besides Esox and Moses in our house. Her hair raised up at first sight of Aden and she was anxious to get to him but didn't.
Training is looming faster and I keep hoping maybe that call will come and training not be needed. With each of the last 2 calls, I had appointments scheduled within 2 days on the first call and 9 days the second. My next scheduled appointment with the kidney doctor is Feb 21 and I keep wondering on whether I'll get the call close to then. When I didn't receive the first kidney everytime the phone rang my heart would skip a beat thinking this was it. After 6 weeks of it not being it and realizing that I was becoming depressed, I made myself think of things other than my health. Praise God I haven't had that issue with the 2nd call. I guess part of that was that I got the emotional dump of emotions when I was turned down. People who interact with our family have offered help in many ways and I always say that I might take them up on their offers. It's hard for me to ask for help though. Part of it is because I don't know what's down the road and that I don't want to wear out people's generosity and kindness at this stage. But truth be told, I don't know when I would. The plan at the moment is for one or both of my sisters to come here and stay with the kids while I'm having the transplant. After being released from the hospital I will go into what they call the Townhouse where I'll need someone with me 24/7 for about 3 weeks depending on my progress. In my mind, that's when the help will be needed. The Lord is dealing with me on accepting people's help and showing me that the bottom line of the issue is pride. OUCH! I've never thought of myself as being a prideful person but I actually had pride in NOT being a prideful person. Circular logic eh?

How To Talk Dog

I've posted pictures of our current 4 legged family members, Reccee and Sneakers. The other pictures are of family members who are no longer with us but greatly missed. My husband kept repeating like a mantra "When Little John goes, NO MORE DOGS!" At the time I agreed with the reasons why but did wonder if we could follow through with that. Little John passed away on a Friday and Bruce left on Sunday morning for a week long business trip. Great, now I had to deal with my own grief as well as our 2 sons grief as a single parent. By Monday night I was searching the net for another puppy and even sent Bruce a link to a sight for Bullmastiff Puppies for Sale. Of course he messaged back NO NO NO. So the debate on getting another puppy began. At one point, I told him if he needed to reach me during a certain time frame to call my cell because MapQuest said I'd be gone about 4 hours. Luckily (or maybe not), I decided to not go and do as I pleased but wait for my husband to come into agreement with me. Yeah, I'm stubborn and pigheaded at times...maybe :) He came home and agreed to getting another dog but wanted to at least pick the breed and not just get another Bullmastiff. Well we ended up 2 days later with Sneakers, an Olde English Bulldog who was a couple days shy of 6 weeks. Already many mistakes were being made in this short period of time on my part. Talking my husband into something, picking a puppy who I picked regardless of what my hubby or kids thought, but most of all taking it at the young age it was. 8 weeks is the youngest a puppy should leave his momma and with some breeds it's even 10-12 weeks. A lot of socially acceptable behavior is taught by the momma and other litter mates in this crucial period. Sneakers lacked that natural instruction time and we began to deal with the outcome. At times we thought we'd have to take the dog back or give him to someone else who had the energy level to deal with him and his problems. Then we got the bright idea that Sneakers needed a playmate to help with his unacceptable behavior and bringing another dog would help him learn. So the search was on for another dog. We consulted a couple of breeders and they all concurred that Sneakers needed an older puppy who would assume Alpha role over him . In came Reccee who is 3 months older than Sneakers. Peace was restablished in the home and life got so much better. Reccee was affectionate with us and just wanted to please us in whatever way. She took care of Sneakers until about a month ago when his size passed hers and he starting vying for Alpha Dog. Oh no! Now some of our issues with Sneakers had resurfaced but this time he had a partner to try and egg on in joining him. At our wit's end, we noticed the trailer on the vet's parking lot called "How To Talk Dog". Sneakers went in for a vaccination and because of my catheter, I had my son handle, I mean wrangle him into the office. Sneakers was jumping up on everyone who came within a 20 foot radius of him while dragging my oldest son behind him. Talk about embarrassing! Information about How To Talk Dog was available and I went home with a business card to make the call. I made the call from the van while driving home, I couldn't wait to get home to make the call. Last night was our appointment with Matt and Sherrie. They spent about 4 hours with us but a lot of that time was due to us telling our war stories about Sneakers. Within 15 minutes, both dogs were lying on their mats in the TV room being submissive with an occasional correction. Now the next phase, bringing in Matt and Sherrie's dogs to see if our dogs would remain where we had put them. Esox and Moses were brought to our front door and told to sit. At first I thought they both belonged to either Matt or Sherrie. Actually, they each had brought a dog. With the front door open and their owners sitting in our TV room those beautiful black labs sat shoulder to shoulder on the porch until they were told to come in and lay down in the foyer. Some corrections needed to be made with Reccee and Sneakers but very minor compared to what it would have been. Esox and Moses were then invited to come into the TV room and they laid down in between where Reccee and Sneakers were laying. Within 5 minutes all 4 dogs were laying on their sides, sound asleep. Matt warned us that the next 2 or 3 weeks would not be fun for us because we have to establish we are the pack leaders. The corrections do not hurt the dogs. A choke collar and long lead is used for each dog. The dogs remained sleeping on the floor for the remainder of the time Matt and Sherrie were with us. Sherrie was concerned about me being able to handle the corrections because of my catheter. (I'm not suppose to lift, pull, or push anything over 10lbs until this is fully healed).
This morning I got up, fed the dogs, let them outside to do their business and put the leads on them and took them to their spots. The dogs laid down and slept off and on. The kids woke up came out, the dogs stayed. Yes, I did need to do some corrections and I'll see tonight when I change my bandaging, how my catheter handled it. They laid there for 2 hours until I let them get a drink and go out and do their business again. As I right this they are asleep in their crates. For the first couple of weeks, if there is a time where I can't watch them constantly, then they are in their crates. They seem happy and contented and relaxed. This has been a lengthy post so I stop here but there is so much more I could say. I highly reccommend How To Talk Dog after 12 hours of use. I'll keep you posted on how it progresses.

Weekly Visit

Today was my weekly trip to the Dialysis Center. I went by myself to see how I would do with the drive and everything. Walking into the back was the easiest it's ever been and I actually met a couple more nurses who welcomed me with hugs. I just love hugs! So much can be communicated in that simple act of hugging. The bandaging proved more complicated in getting off this week because the surgeon had used a loose weave gauze pad and I'm still having some bleeding around the exit site as they call it. They sent me home with instructions on how to now change my bandage everyday instead of letting them do it. My head still spins when the bandage is removed and I'm confronted with the sight. The same thing happens when the news show does a segment on flu shots and they show people getting injections. I can't look at needles. Even my insulin needles I came up with a way to have my thumb obstruct my view of where I was giving my injection. Looks like I'm gonna have to come up with some creative ways of changing the bandages. I did OK on the drive until about 25 minutes from home when exhaustion really took over. My kids and husband had eaten lunch so I was undecided about whether I should stop and get something. The problem is that I hate making left turns on major roads and most of the fast food places would have me do that to get back to the Interstate so I kept on. We had recently been to Rosie's and I had brought home a Beef Chimichanga and I kept thinking about how good that would taste in the hopes of getting me home safely. I did make it home safely but my husband had taken MY chimichanga to work for lunch yesterday! Oh well the thought of it still helped me LOL. Training will begin February 11 and I'll be down there everyday for a week. What I didn't realize is that my "Clean Room" has to be now and not when I dialyise. My bandage changing is to be done ONLY in the clean room and after I wash my hands in a ritualistic fashion, completed by the wearing of rubber gloves and a surgical mask. I think our upstairs guest bathroom will work the best. The dogs aren't allowed upstairs and there is a separate heating/ac unit for that part of the house. I just need to turn off the system while I'm changing or doing the dialysis so that no forced air is pushed into the room. For those who don't know me, I sorta fly by the seat of my pants and am not diciplined or regimented. That's gonna have to change whether I like it or not. For those who do know me, well, you understand the challenge before me :) The thoughts and prayers that have been lifted up on my behalf have been working! Thank you so much. I am reminded of the poem "Footprints" and realize that lately there are only one set of prints in the sand.

Surrogate Families

Not sure where this post will end up but I'll try and write the different jumblings in my head. When I walked into the Dialysis Center for the first time, one of the nurses said to me "We're all family here" My initial inward response was, I DON'T WANT to be part of this family!!. But the Lord began dealing with me about the concept I use to be a hard core addicted online gamer with Dark Age of Camelot (DAoC). For those that don't know, it is a role playing game where you create a character, work up to obtaining level 50 and other assorted skills that supposedly give you edge over other players in combat. There are many ways to work your levels up. My favorite was always what was called PvE (Player vs. Environment). There was was called PvP (Player vs. Player) and that is where people would duel one another who were not part of your "guild" or "realm". Playing day in and day out with the same people in conquering the different quests, or dungeons or bosses ended up unififying a motley group of people from around the world. In DAoC they also have keeps and towers that can be sieged and taken over by the conqueroring realm or guild. After getting to "know" people or the characters they played, you developed a feeling of family because of all the tasks that were accomplished with everyone's help, or the quests that were completed because everyone helped and most of all the taking of a keep or tower with the team work that it took to defeat the enemy. It was a sense of family. It was forged out of the principal of fighting to overcome things that were not doable by yourself. I realized that the nurses and staff at the Dialysis Center were there to do the same thing. They are part of my team to overcome this quest of Dialysis and to help me in the fight of taking the keep (getting a kidney). I think that is why the Lord of the Rings and Chronicles of Narnia are such a big hit with me. It's a group of people who individually couldn't even imagin what was accomplished by the efforts of a united team. Realization of how this game was an addiction didn't hit until this past July when I decided I didn't want my children's memories of their childhood being their Mom on the computer fighting dragons, mobs and running siege equipment for keep take overs. What also has struck me lately is that is what church should be about. A sense of family, joining together to fight against something greater than the individuals involved (evil/sin) but accomplishable by the effort of everyone. It's been 7 months that I've stopped being a part of an online "family" and I will say at times the draw is there to just log on and play for a bit but I don't. I now realize my new family are real faces with real names who I see every week at the Dialysis Center and are helping win a battle that really matters.

A Clean Room

One of the preparations that need to be made in doing home dialysis is having a clean room. Sounds pretty innocent doesn't it? Well so far some of the definitions I've learned about what they mean by "clean" is: no dust, no pet hair, no air conditioning or heating units in the area. I am not the world's messiest house keeper but neither am I the neatest. Over my 23+ years of marriage the only strife my hubby and I have had is about housecleaning. When company is expected he turns into what I call the "Cleaning Nazi". My problem is deciding where this clean room can be. We have 2 Old English Bulldog Puppies (Sneakers and Reccee) and the nurse has just said I need to make sure they can't get in the room where I'll do the exchanges. For those that are not aware of this type of dialysis, I'll try to explain. Inside of your abdominal cavity is called a peritoneum. A catheter is surgically placed inside of this cavity with tubing of about a foot hanging on the outside of the body. Along this tubing is a valve that allows access to the inside of the body. A certain amount of healing needs to take place for the catheter to set up. Diabetics have problems healing quickly and getting infections easily so this is a major issue with this type of dialysis. What happens after the catheter is at a point to be used, is that I'll go through a week long training process at the Dialysis Center on what I need to do. At the moment my training is set to start on February 11. A bag of dialystic solution is pumped in through the tubing and remains there for a period of time. Each person as I understand it now, is different in how long it remains there. After a period of time, the tubing is hooked up to a bag and if things are working like they should, the fluid drains out and a new bag is pumped in. What happens during the time the solution remains in your body is that it absorbs the toxins that the kidneys would normally filter out. So a person's absorption rate needs to be determined as well as what amount of solution to use. When a new bag is put in and the old bag drained out that is called an "exchange". Some people have to do multiple exchanges a day while others can do it just at night while they sleep. The night time exchange is a little more involved because a machine is used. I haven't learned to much about that method yet. I am interested to see what is going to work best for me. The 64,000 dollar question at this point is where I'm going to have this "Clean Room"

Another Visit to the Dialysis Center

Yesterday was my weekly visit to the Dialysis Center for a flushing of my catheter. I didn't bother to look up at the name of the place in the hopes of avoiding the whole ton of bricks hitting me like last time. Going into the back where all the patients are still makes my head swoon a bit and I'm unsteady on my feet but it wasn't as strong this time. I knew what to expect but this time I noticed on the little chair table next to me was a tournaquet and an alcohol swab. Warning bells started going off in my head because these are the things used in drawing blood. Even after 40 years of being a diabetic I'm not use to needles. I HATE needles! Before I let any vampire get any of my blood I ask what test they are doing and why they are doing it. Most of the time I know the names of the test and reason for it. While during a hospital stay for an infection on my leg from a bug bite, one of the vampire came in at 2:00 in the afternoon. After grilling her on what the lab orders were, I declined the tests. Apparently they are not use to patients exercising that right. The resident doctor came storming in to try and intimidate me into having the blood work done. I went down the list of each test and reason I was declining it. First was a test to check my cholesterol and that should be done as a fasting test and since I had eaten breakfast and lunch in the past 6 hrs it wouldn't be an accurate reading. The second test was an A1C test which is commonly done in diabetics. The issue I had with was that I had been to my quarterly checkup complete with bloodwork 10 earlier so there was no need to repeat that test. There were a couple other minor tests but those too had been covered with my quarterly checkup. Needless to say that resident doctor and I didn't get along very well. We had another disagreement on what to do about my insulin pump. He wanted me to remove it so they (hospital) could manage my blood sugars. The main function of an insulin pump is to easily manage blood sugar levels without the multiple injections. In fact in order to go on a pump, I had to be on at least 4 shots a day. Like I said before, I HATE needles so there was no way I was going to let them take my pump off. All this to say, I'm very protective of my veins and I worried needlessly over seeing the tournaquet. They did not need any blood and that was a big relief to me!
The catheter this week showed signs of bleeding which it had not done until yesterday. So I've been told to stop doing too much and let it heal. I didn't realize I was doing too much but I'll keep that in mind and try and do less of whatever it is I do.
Also had a visit with the surgeon who said things were looking good to his satisfaction. He said that January had actually been a slow month in doing transplants. They had a good number of organs come in but unfortunately they were too scarred to be usued or didn't perform well on a profusion pump I think he called it. Training has not yet been scheduled for me to learn how to dialysis at home and the surgeon had commented that he hoped I got a call before I needed to use it. That's my prayer.

Reality Check #1

Well surgery went well with the catheter placement. No phone call came to save me from this procedure. While lying in the operating room waiting for them to get started, the phone rang and I heard through my groggy state "Yes, we have her here now". I immediately asked if that was a kidney for me which made the OR team laugh. Then I hear a voice above my shoulder saying breath deep and next thing I know I'm waking up with my stomach burning and needing to vomit. The oxy-cotin drugs make me extremely nauseous so they were unsure of what to give me. They tried asking my sweet hubby but he had no idea what didn't make me sick Eventually Tylenol #3 was decided on and I was sent home with prescription in hand and enough injected into me for the 2 hour ride home. The rest of that day and Saturday are a blur to me. Sunday evening I made it out of the house to attend our home fellowship church. Today I had to go and have the catheter "flushed". I've decided to name my catheter "Herman" after Herman Muenster. My hubby and I watched an episode of the Muensters just before they wheeled me back into the OR. Not knowing what to expect, I was pretty nervous. As we drove around trying to locate the place, I saw a sign that said Dialysis Center. Seeing that word "dialysis" hit me like a ton of bricks. Here I thought the worst was behind me with the surgery. Now, I was brought up short by the fact that I gotten through one stage of this journey but there are still many more stages to get through physically and emotionally. The PD nurse was wonderful and explained everything that was being done and why and there was no pain involved. But the emotions running through me as I sat there amidst others going through dialysis was very daunting. I'll have to go again next week and run through the same procedure as well as visit the transplant office. Driving down there I was going over how blessed that I'm doing this now instead of 22 years ago. The medical technology and drugs are so much better now. Even that I have the option of doing dialysis at home is a big thing. I'm a pretty upbeat person usually but there are times when a reality check hits me and I have to focus on the good and get my bearings back. Today was definetely one of those times.

4 years and counting

I never thought in a million years that I would join the world of bloggers but here I am. This will be about the journey to receiving a transplanted kidney. I've been on the waiting list now for 4+ years and have been able to dodge the dialysis bullet. As it stands now, Friday will be surgery to install a catheter for home dialysis. My prayer is that a call will come before then that a match has been made. July 25 I received a call saying they may have a kidney for me but after all the extensived testing they did, it was determined that neither kidney was viable for transplantation. My husband and I drove home thinking the next call would come in the next few weeks. Well the weeks stretched into months and finally in December I got another call. The organ center asks you questions like how tall are you, what do you weigh, have you been on any antibiotics in the last month. This time instead of giving me the go ahead to make the drive to the hospital, I was told that the surgeon needed to be consulted and that I would receive a call back. Sure enough, 15 minutes later the call came in saying I was not eligible for this kidney due to the surgeon's guidelines. I had never been informed that this could be a possibility so I was totally dumbstruck at this piece of news. Long story short, I didn't receive that kidney either. Now dialysis is looming on the horizon and somehow that process is scarier to me than the thought of the transplant. Don't get me wrong, I feel very blessed to have gone this long without dialysis. 22 years ago I was told I would need a transplant within 5 years. The Lord has carried me through many things over these years. Two adoptions of newborns who happened to be related, breast cancer scares, being bound to a wheelchair for 5 months, cataract surgeries just to name a few. I know He is still with me and will see me through this. I'd love to hear from anyone who is or has gone through a transplant.