 Michael's
Pre-Transplant
Blog Creatnine
level = 7.1
Questions?
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last updated 11.16.06 |
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Upcoming...
11/17 Transplant! Yikes!
Interested in being a donor? Call 1-800-277-8687 Option 4, Option 1 Tell them you're interested in being a donor for Michael Dean. They'll let you know what you need to do. We are grateful for anyone who is even thinking about being a possible donor for me. Links: What we learned at our Transplant Education Class on 6/15 MUSC (Medical University of South Carolina) AAKP (American Association of Kidney Patients) National Foundation for Transplants
Definitions: fistula - An access made by joining and artery and vein in an arm. creatnine - A waste product of muscle tissue. It is produced at a constant rate and excreted by the kidneys. A level of 7+ is when dialysis is needed.
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November 16, 2006 We arrived last night and checked into our hotel. Then today, I went with Tom to MUSC to get some final tests done. It looks like everything is good to go. There is a chance that my surgery will get postponed if they need to perform a transplant from a cadaver. I have to be at the hospital at 6am. We will keep you posted.
November 10, 2006 FINALLY! Tom's stress test went well and the surgery has been set for Friday November 17th. We have to be there a day early for some last minute tests to make sure we are still both healthy, etc, and then Friday we're good to go! Sally will be keeping this blog updated while we are in Charleston at MUSC. We will be there for approximately 10 days.
November 8, 2006 Tom is scheduled for a stress test on Thursday at University of Maryland Hospital in Baltimore. We are keeping our fingers crossed that everything goes well. We don't know how soon afterwards we will get the results. As for me, I am hanging in there. There are times when I feel okay, and other times where I feel really sick. I'm hoping I can hold off from dialysis a few more weeks (assuming Tom's test goes well and we get scheduled for the transplant!). I was a little concerned about how I was feeling and set up an appointment with a nurse practitioner at his office for later this week. They told me to get my creatnine level checked again. I did that yesterday. Today, Dr Acres called me and said it was actually lower than it was 2 weeks okay (he didn't tell me the exact number). He suggested I just keep a watch on how I feel. If I need to, I would probably do temporary Hemodialysis until the transplant takes place (again, assuming Tom is a good match).
November 3, 2006 Phone call with Tom Tom got the results today from his evaluation. All of his tests went well except for one. He will need to do another stress test or a different kind of stress test. We are waiting to see if our insurance will cover it and where he can go to get this test done.
November 2, 2006 Email from Jennifer Wood I received an email from Jennifer Wood saying that the physicians didn't get a chance to go over Tom's tests today and that they would go over them tomorrow (Friday). So, we're hoping to know by Friday if Tom is a match and healthy enough to be a donor.
October 30, 2006 Tom - evaluation at MUSC Tom had his big evaluation today. He told us that everything went ok and that he would hear his results on Thursday.
October 23, 3006 Dr. Acres Normal checkup I had another checkup today. My creatnine level is up to 7.1. I am very close to dialysis, but my doctor says that as long as I feel okay, I won't need it. We are still hoping to get the transplant before I have to go on dialysis.
October 16, 2006 Phone call with Tom to get update After going back and forth with our insurance, and nothing getting done, Tom is finally going in for his evaluation! He will fly down to MUSC to get tested. His evaluation will take place on Oct 30th. This whole process has taken longer than we had hoped and our patience with the insurance company is wearing thin. We are not sure how long after his evaluation it will be before we know if he is a good match. I am hoping it won't take long, because every day I am that much closer to dialysis.
September 12, 2006 Dr. Acres Normal checkup I had a normal checkup today. My creatnine level is up to 6.1. Dr. Acres said that he was "not going to panic yet". That didn't make me feel great, but he basically means that he is still assuming I will be getting a transplant before I have to go on dialysis. My blood pressure was still higher than he wants to see it, so he doubled the amount of Minoxidil I am taking. My red blood cell count is also starting to get low due to Anemia (from low kidney function). For that, he started me on Procrit shots once every 2 weeks to help combat the Anemia. I still feel pretty good, but I get pretty tired in the afternoons, and I can see a little swelling under my eyes when I wake in the morning. Both of these symptoms are normal based on my kidney function.
September 7, 2006 Tom - Initial blood work - Take 2 Tom got his initial blood work done today without incident. Just waiting for the results...
September 6, 2006 Phone call from Cigna case manager Sally called our case manager, Patty, to find out what the deal was with Tom. Patty called back leaving two messages. The first one saying that Tom's insurance should get billed first, so they can deny it. Once they deny it, then they will bill our insurance. She also said she would call MUSC to see why Tom was turned away. She called back shortly after leaving another message letting us know that MUSC neglected to submit all the insurance information. She was told they faxed the information as of yesterday so Tom should have no other problems.
September 2, 2006 Tom - Initial blood work Tom tried to get his initial blood work done today, but there was a problem with the insurance so he was turned away.
August 24, 2006 Phone call from MUSC Initial blood work for Sally looked good, but MUSC started to question Cigna's choice for the first donor. I had asked Jennifer Wood at MUSC why they chose Sally instead of Tom, and she thought that was a good question considering he is family and we would have a slightly better chance getting a match with him. After MUSC discussed it, they decided to go with Tom. Apparently Sally didn't need to go first. We were under the impression that we had to test who our insurance chose. So, for now we are going with Tom, and Sally is still an option if we need her. A nurse from MUSC will be contacting Tom to get him started on his initial blood work. It might take longer to get him tested since he is out of town and they have to contract all the evaluation tests to another hospital in Maryland.
August 22, 2006 Sally - Initial blood work Sally went in to get her blood drawn for the initial blood work. The results will be sent to MUSC and in a couple days we will know if she can proceed to the evaluation stage.
August 17, 2006 Phone call from MUSC Sally received a phone call today from a nurse at MUSC. Now that we are in Zone 2, we can start testing possible donors. Apparently our insurance in in charge of determining who gets tested first. Sally has been chosen to be tested first. We are not sure what their reasoning is, but we have to go by what they say. The nurse told her that they would mail her the orders to get blood work done. We are expecting for that to happen early next week. First, she will get initial blood work done, checking to make sure she's healthy and her kidneys are functioning well. If that all looks good, then she will have to have an evaluation probably similar to the one I had back in June, just making sure she really wants to be a donor, that no one is paying her to do this, that she has someone to help take care of her after the surgery, etc. After the evaluation, they will do tissue typing to determine if she is a good match for me. It's possible there will be other tests needed along the way. The entire process (initial blood work, evaluation, and tissue typing) could take up to a month. If at any point during the testing, she turns out NOT to be a good candidate, then we can start with the next possible donor.
August 3, 2006 Phone call w/ Cigna case manager Sally talked with our case manager today and found out that we are now authorized for Zone 2! There are 4 zones (1 - Evaluation, 2 - Waiting, 3 - Operation, and 4 - Discharge) that our insurance uses to basically determine what expenses are allowed. Now that we are in Zone 2 (waiting for a transplant), we can start testing possible donors! We found out that our insurance only allows us to test one possible donor at a time. So, we'll start with one person and test them until they are either an excellent match (and then we're on to Zone 3 - the operation) or they are NOT a match, and then we can start testing the second donor. We continue that until we find a good match or we run out of possible donors. I believe we are also now on a waiting list, but will need to confirm that.
August 2, 2006 Dr. Acres Normal Checkup I had a normal checkup today. My creatnine level is up to 5.5. Dr. Acres is a little concerned with it going up, but still wants to wait a little longer before putting a catheter in for dialysis. As I said before, we have decided that if I need to go on dialysis, I am going to do Peritoneal at night. It takes about 2-4 weeks for the area where the catheter is put to heal, so we would want to try to do it before I NEEDED dialysis so that it was healed and ready to go. For now we are just going to take it month by month and see how things go. The ideal situation would be that we find a matching donor and go straight for transplantation without ever getting a catheter or having to go on dialysis.
We are still waiting for approval from our insurance. I did some final tests 2 weeks ago, but there was a delay with getting the results back to MUSC. As far as I know, our insurance has all my paperwork and we're waiting on them. Once they approve we can start testing potential donors. I plan to call our case manager tomorrow to see what our status is.
July 28, 2006 Phone call w/ Cigna case manager We were contacted by our new Cigna case manager today. Her name is Patty McCartney. She called and talked with Sally. She is taking over for Brandon Brown. She went over a few things with Sally to make sure all the information she had was accurate (i.e. what tests have been completed or still need to be done).
July 17, 2006 Greenville Radiology EKG and Chest x-ray In order for MUSC to send my information to my insurance for approval, I had to get a chest x-ray and an EKG. I went to do that today. The results should be sent to MUSC by Thursday and then hopefully everything can be sent to my insurance.
July 10, 2006 Review Committee We got word today that I have been approved by the Review Committee at MUSC pending a few tests that our insurance requires. I will have to have a chest x-ray and an EKG. They are going to try to get my information sent to our insurance by tomorrow for their approval. In the meantime, I will be sent orders to get the x-ray and EKG done.
June 28, 2006 Evaluation North Hills Medical Center (Greenville) At the evaluation, we talked with a social worker, a nurse and one of the surgeons from MUSC. The social worker was basically trying to see if I had caregivers and transportation and also to see if financially we could afford the transplant. The nurse just went over my health...have I ever had cancer, liver problems, etc. There really wasn't much to that. Then we got to talk with a surgeon. He went over the procedure and talked about medications I would be on. None of this information was new to us. Although, we did find out that age is NOT a factor for the donor. As long as the donor is in good health and has good kidney function, there is no reason why they couldn't be a possible donor. Also, we found out that a donor could have had kidney stones before and that wouldn't be a problem.
We then talked with one of the nurse coordinators and she gave me orders to go get some blood work done and to have some blood sent to MUSC so they can do tissue testing. We were told that she was hoping to present us to the review committee at MUSC on Friday July 7th. If we get approved for the transplant (which it looks like we most likely will), they will send copies of my records to our insurance for their approval. Once they approve, then I can be put on a waiting list and we can start testing possible donors.
June 19, 2006 Dr. Acres Normal Checkup Nothing exciting happened at this checkup. He didn't take any blood or anything. I'm scheduled to see him early August and will have blood drawn then so we can check my creatnine level.
June 15, 2006 Transplant Class University Center in Greenville, SC We attended the transplant class today. It was a little over 3 hours and packed full of information. A lot of it we already knew because we've been researching transplantation, but some of it was new. While we were there, we were able to set up my evaluation. We thought we were going to have to go down to Charleston, but it turns out we can have the evaluation done here in Greenville. Since I'm still fairly young and healthy, I won't have to do some of the tests like the stress test for example. The evaluation is scheduled for June 28th. More information regarding what we learned can be found here.
June 9, 2006 Phone call w/ Cigna Case Manager We were contacted by our Cigna Case Manager, Brandon Brown. He discussed what our insurance benefits are, and what our deductible and maximum out of pocket expenses will be. He is the one we will work with when we have questions regarding what our insurance will or will not cover.
June 9, 2006 We received the information from MUSC. Our transplant class is June 15th at 10:30am at The University Center in Greenville. It's a 3 hour class and we will be discussing transplants, living donation, and our financial requirements.
June 8, 2006 We received a call from a nurse at MUSC. She said that the information regarding where the transplant class is to take place has been sent to us and if we haven't received it by next Tuesday or Wednesday that we should give her a call.
June 7, 2006 We still haven't received any information about the transplant class we're taking next week. Sally called and left a message with a nurse at MUSC to find out if anything had been sent to us and to make sure that they had us on the list.
May 23, 2006 Phone call from MUSC A nurse from MUSC called asking what insurance we had. Someone already contacted them about being a donor, and the nurse wanted to see if our insurance would allow this person to start getting tested. We found out that Cigna would NOT allow that. After we take our transplant class, I will have to go to Charleston for an evaluation with a surgeon, speak with a social worker, and have some blood drawn for various tests. At that point, I can be cleared and then we can start testing possible donors.
May 15, 2006 Called MUSC Sally signed us up for the transplant class on June 15th. They are going to send us info (directions to the class, what to bring, etc).
May 4, 2006 Dr. Acres Normal Checkup I went in to see how the Zocor was working. My HDL was down from 205 to 154. We were also surprised to see that my creatnine level had dropped from 5.2 to 3.9. Dr. Acres really didn't have what I call a good explanation for why the number was lower. So, overall it was a very good visit where everything looks good right now. He also explained that he won't be having the fistula for Hemodialysis nor the CCPD (Continuous Cycling Peritoneal Dialysis) catheter installed until about a month or 2 before he thinks I will need dialysis.
May 3, 2006 MMOB Greenville Vein Mapping I had both arms' veins mapped today. This was done so that if I ever needed to have a fistula access put in my arm, they would have the information available. A fistula is a direct connection between a vein and artery using a piece of vein taken from my arm. This connection allows a large amount of blood to move through the fistula. With a large amount of blood flow, the fistula will expand in size. This is then a perfect place for the repeated needle sites needed for Hemodialysis.
May 2, 2006 We decided to go with MUSC (Medical University of South Carolina) in Charleston as our transplant center. Sally called Carolina Regional Nephrology to let them know and they have sent our referral to MUSC. We are now just waiting to hear from them.
April 27, 2006 Twin Oaks Dialysis Center Dialysis Options Class We learned about the different types of dialysis: Hemodialysis and Peritoneal. We also received a folder with more detailed information about dialysis, transplants, and restricted diets which vary based on which route we chose to take. We plan to read through it all before we give a definitive answer as to which type I will use if I need it. But as of right now, I've decided that I would probably rather do the Peritoneal at night. I don't want to spend a lot of time at a dialysis center (4 hour treatments, 3 nights a week with Hemodialysis). Most of the people there would be a lot older than me, and I would rather have that free time to spend with my family. |
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