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.