The new chapter

Well if this is a new chapter in my life it sure is starting out boring. The local hospital is small and they had to send some of the blood work off to another lab as they don't have the equipment to do it with, also some of their equipment was down so it took until Wednesday to get their part done. My numbers looked good and Baylor had no changes to make. I wondered how it was on Tuesday morning @the Baylor lab, missed it too. Mike Cooper called this afternoon, I was out in the yard working, Donna talked to him and he said he didn't know anyone @ lab or clinic and most of the people were unfriendly. There was just something about the group (extended family) that clicked, the clinic was always abuzz with talk and when the nurse called a name most often she had to call it twice or someone who wasn't talking at the time would give you a nod or a nudge and say your up. I guess that happens now & then but not always. That is the reason Mike called today, he missed the family too. I think Donna is going to email everyone and say hi and see how everyone is doing. I'll post if I hear something worth posting. Tomorrow (Friday) is my birthday and my first day back to work. Wish me luck. Thanks again for the support and prayers.
Love always Mikey & Donna

Free at last , Free at last

Well the day has arrived, and I am really released and just like I said last week it is kinda sad. I am happy on the other hand that I don't have to go back and that I can go to work next week. Mike Malouff said that it's the end of one chapter in my life and the beginning of a new one. Everybody looked pretty good on Tuesday, Mike Gunter has been sick due to the chemo. Mike Malouff had a bit of a scare, his numbers were off a little so the Dr. made a change and wanted him to stay another day to do labs again. It turned out OK for Mike and he was on a plane by noon the next day. I saw Judy come out of the clinic but didn't talk to her, she had to go do a biopsy and I am not sure how that came out. I didn't see or hear from Mike Cooper or some of the others so I am hoping they are OK. Chuck Jones has CMV, I'm not sure what it is, but he looked good and seemed to be feeling OK. I don't know if I will keep up this blog much longer, I still have to do lab work weekly but I won't be going to a clinic. I will however keep up with my family and hopefully report on their release when it happens. that's about it for this week.
Love as always Mikey & Donna

Post Card from My Donor

Here ya go Marla and anyone else whom might be interested. I wish my scanner worked so I could just scan this card, oh well I need to cleanse my soul with another cry.

The front of the card says "Every sunrise is proof that God is still in the miracle business." The pic is an unfocused sun coming up over a wheat field, with only 2 heads of wheat in focus. The card reads as follows:
Hi-
Thank you for your letter. You can't know how much it means to me and Jim's family. His name was Jim. He was married and had 5 children, 10 grandchildren and last August , we had a great- grandson added to the family.
He was one of the nicest guys you could ever meet. He never knew a stranger. My sister used to say Jim was only guy that could walk into a room knowing nobody and leave having four or five best friends.At his funeral, so many people spoke of how he always helped them with a joke and a smile, that was his way.
he also loved animals. Any animal. We have 6 cats at home in the house. We also have 3 feral cats outside that call our yard their home. At our shop, we have 2 inside cats and 3 outside. So you see we really like the idea that you have cats also.
I like the idea that you are trying to quit smoking. As a birthday present to me in 1991, Jim quit smoking after 45 yrs. I do believe that it added years to his life. I hope it does the same for you.
Thanks again for your letter. Jim always said that when he was done, they could have any part of him that would help others. Treasure his liver and know that we are glad a physical part of him still lives. Were still pretty lost! We miss him! Kiss your people and cherish each day!
Jim's Family

Next to Last Tuesday

I'm running out of titles. This was a good Tuesday, my clinic went real well. Dr. Chinnakotla aka
Dr. C said the way to fix my problem with low white blood count was to use the same hormone that the kidney produces that helps produce white blood cells. That sounds plausible (seems like everything they say sounds plausible) so he had me get a shot of this hormone. The Guinea Pig Syndrome, different doctor different diagnosis, try this and see if it works if not we try something else. Dr. C also told me I will be released next Tuesday (YAHOO) and I will be released to go back to work on June 1st (YAHOO). Special note to Skeetercaster in Florida, yes I do want to go back to work and no I don't have a fever or feel sick. LOL. All the extended family were in good shape and most of us are on the count down to once a week and or release. That makes me happy and a little sad, I really have enjoyed the interactions and relationships that Donna & I have built with these people and now we won't see each other once a week anymore and if any of you are reading this " I Love you guy's and will miss you very much". I will however keep in contact and hopefully see some of you now & then. Thats about it for this week love always.
Mike & Donna

Bad Tuesday

Well Donna got the rest of the pics posted and emailed. I went back to Dallas for lab, clinic & chemo and I went by myself, that sounds like a receipt for trouble don't it. Donna was working and I flew down Monday evening and stayed with Dick Grantham no problem. I did the lab then went to breakfast with Mike & Patti then to support group. I only saw a few people in the group but everyone was doing good, the pastor informed us he was leaving Baylor and going to Duke University Medical Center as a pastor supervisor. Duke is in South Carolina but he said the college was a plus with his children and there was probably more money involved, Oh well we all thanked him for his prayers & support and his 10 years at Baylor, I'm sure he will be missed. Dr. Sanchez was in clinic and he informed me I was anemic & dehydrated, and he wanted me to go get a blood transfusion (2 units). I had Donna on speaker phone on my cell so she wouldn't miss my report, I am obviously not inquisitive enough to ask enough questions. I had to check into the hospital and it took a while then I was sent the 6 Roberts ( oncology) which really didn't mean anything to me and by the time I got paperwork done ( Donna not being there I had to fill out paper work all by myself,and I got it done before the nurse got her work done) and the nurse got some blood it was 4:00 pm and it took 3 hrs to infuse it, then the next one came at shift change time, more delays. The 2nd unit got started at 8:00 and took 3 hrs. They decided it would be cruel to kick me out at shush an hour so they admitted me. The next morning (today) I started to panic when no one came to get blood and was told there was no orders to do so, I couldn't leave because there was no discharge orders, if I walk out the insurance company may or may not be liable for my stay, now it's about 8:00 and I'm getting mad and the staff seems to not be understanding me. I had verbal orders to be at lab by 7:00 and when he got results he would call me and tell me if I could come home or not. The Dr. didn't know I was in the hospital and he took his sweet time about returning the phone calls from the nurses that I was yelling at, I had gotten dressed and was walking out....... it finally got resolved they drew some blood and I apologized to everyone that I yelled at and maybe left in good standings. The transfusion did exactly what he wanted it to do and he called me and said go home. Here is the really cool thing that happened in clinic, one of the nurses came into the exam room with my copies of the lab work then another one came in and said here is something special and handed me an envelope with a sheet of paper folded over it. The paper was type written letter saying here is a card from the Donner family, I got a chill up my spine and said something to Donna on the cell about it then the coordinator came in and we dropped that to see what my blood work looked like. I decided to wait till I got home to open the card so Donna could be there and we could share, aw how sweet, ya ya I know. She called me about 8:00 ish or so and said "What did that card say"? she talked me into reading it over the phone and we both cried, I am undecided as to whether or not I will post it here. The family only told me his first name and a little about him. Let me think about it before I decide, it might be more personal than my prostate exam. LOL
Love always Mike & Donna

Kidney Specialist

Well Wednesday Donna & I were in Amarillo looking for bedding plants when we got a call from Baylor Medical Center asking if we could be at the Nephrologists (kidney specialists) in the morning @8:00, well we decided to do it now and maybe get something done by the 15th of May which will be my last clinic. He did a urine test and then looked @ all the other labs from Tuesday and will confer with Dr. Randall about changing meds, but he didn't seem in a real big hurry about it. I guess I'll see what is said in clinic next Tuesday. I am getting sick of the Drive to Dallas and back already, shesh. Next week I get to fly, that will be much better and much quicker. This was a fast trip I went to bed @8:00pm and got up @1:00am and drove all the way, got to Dallas @6:45 or so and had breakfast and was @ the Dr. office @8:00. We were back home @4:45pm and we stoped and bought a load of bedding plants on the way home. Well that's it till Tuesday.
Love Mikey & Donna

1/2 Way Through 3rd month

Today was half way through the 3rd month and the clinic went pretty good, Dr. Randall was my Dr. and he wanted me to see a kidney specialist because my creatin level is still too high. I will have to wait on an appointment. I did a glofil test, drink iodine then get a shot of something I can't remember what he called it then drink 48 oz of liquid of choice within an hour. That was just the start of the test. I alternated from drinking 2 cups of liquid (tea) and having blood drawn then emptying my bladder, we did this 3 times. The purpose is to get an accurate account of what the kidney's are doing. This set us back several hrs so we canceled the chemo. Dr. Randall had said he thought my breathing problem was altitude related, we found out the altitude in Pampa is 3600 ft and Dallas is 500 ft. that is quite a difference and could just take getting reaclimated to. Sounds plausible to me. Donna & I had dinner with Patti & Mike as soon as we got to Dallas Monday evening then got lost going back to our motel, LOL, we did find our way so it wasn't that bad of an experience. We didn't see that many "family" members but the ones we saw were doing fine, Brother Bill had a huge smile on his face so I knew he felt good inside and out. Word was that Mike Cooper wasn't looking too good but that's all we got and we don't have a phone # to call them or an address at Twice Blessed House to go see him & DeAnn. I will try to contact him next week. That's it for another week. Donna didn't sleep well last nite and is exhausted, so she went right to bed after putting my meds together and believe me that's a chore. Thanks for your prayers & support. Love always Mike & Donna

Going Home

Yesterday was the first once a week Tuesday and the clinic was good. Dr Randall was there and decided to take me off of rapamune and put me on cell cept. We are hoping that this helps my shortness of breath problem. We had breakfast with Mike & Patty after labs, it was good to see Patty again, they were both a little apprehensive about the clinic because every clinic Mike has gone to they have found something wrong and sent him to the hospital. Mike got a good report today and no hospital, YAHOO. Mike Cooper wasn't feeling good and we aren't sure what came of his Dr. visit, will have to e mail them and see. Norman is still in the hospital, "14 Roberts" for some reason he can't get his O2 level up, the pneumonia is almost gone but still low O2, will say a prayer fro him & Mike Cooper. We got back home to Pampa @7:30 and had a party with the family & some close friends, lots of hugs & kisses. The cats all remembered us and were all as glad to see us as we were to see them. I still didn't sleep even in my own bed,and my shortness of breath is worse here than in Dallas, will see if the removal of the rapamune will fix that or not. That's about it till next week. Thanks again to all for support & prayers.
Love Mike & Donna

Here They Are

Well I have talked about several of these people and have referred to them as our extended family, here they are. I feel like without them this experience would have been much harder on Donna & I. They made me want to get up on Tuesday's & Friday's and gave those day's more meaning than just going to see the doctor and see if I was healthy or not. I also had someone else to worry about also when one of them got sick or had some complication, that gave Donna & I a purpose for the day to check on that person and give them some love & support and to me it is as important to give those things as it is to receive them. Donna & I will always remember and love you guy's and hopefully you will have fond memories of us too. Oh by the way all the transplant patients were men except Lea & Judy, there was also a lady named Janet but I don't have her pic. There are a couple of others and due to circumstances I don't have access to their pics yet, Donna was going to wait till we got home to add them, I post them then, sorry.Well I guess that's about enough mush, till tomorrow and our first once a week clinic.
Love always Mike & Donna

20th Annual Reunion

Well yesterday was a nice luncheon sponsored by Lively Livers. There were lots of people there, those of us who are weeks post transplant to those that are years post transplant. We were all liver transplants and so we all had that common thread. The 20th Annual Reunion was Heart & Lung, Kidney & Pancreas, Livers, Blood & Marrow, Children's Medical Center & Baylor All Saints Liver, Kidney & Pancreas all together and it was really great. Good food about 40% of our extended family and just a beautiful day & location. Donna & I stayed about 3 hrs and ate twice took pics chatted and just had fun, also got lots of free stuff regarding transplants & organ donation. Mike Malouff showed up and ate and socialized then had to go watch his horse run, probably with his buddy Tony. Well that's' about it, just another special day with special people.
Love always Mike & Donna

The Last Friday

Well today is week 8 and this is the last of the twice a week hospital visits. The clinic went routine with no change other than a sleeping pill and hopefully I won't need one when I get home. Brother Bill was looking really good today as was Mike Cooper, I am so glad to see those two doing good they have been through a lot and deserve to feel good and be healthy. Mike Malouff was still in the hospital and wasn't in very good spirits, then Dr. Reiz came in and told him he could leave the hospital and just return to the twice weekly clinics, this changed his outlook and he was up and ready to leave right then. The Dr. were having a hard time pinpointing exactly what his problem is, most of his numbers look good, oh well maybe if he gets away from the hospital for a while his problems will go away. Norman Olson, the older man, is in a room on 14 Roberts and his pneumonia is healing fine we visited with him and his wife this morning also, he should be out of the hospital by Monday. We also saw Mike Gunter and he wasn't doing so well, he had an incision infection, will see how that turns out this weekend. I am posting on the actual clinic day (Friday) because tomorrow there is a party @Twice Blessed House for transplant patients and we are going to go, then Sunday there is an anniversary party @ the Tom Landry building and we hope to attend both of these little parties. I realize that I didn't make it clear last Tuesday the results of my prostate exam, anyway after the invasion his findings were inconclusive, he couldn't tell if the prostate was swollen or not, that's great and almost all for nothing. Oh well I guess that's the way it goes, the flowmax hasn't done it's thing yet but he said it takes several day's so I hope it kicks in soon. Well that's all for now, we will be home sometime Tuesday evening, YAHOO. Thanks again to all for your prayers & support.
love always Mike & Donna

Last Week in Dallas

Well the Dr. told us yesterday that we can go to once a week next week so after chemo on Tuesday we are headed home. The clinic was routine with no changes and probably won't have any for a while, my glophil ( a test of the kidneys to show true function ) won't be until May 1 and then there may be some change in meds. The chemo was quick and easy as usual then came the urologist, he did a UA and found nothing then did a sonogram to see if I emptied my bladder and I had so he then did a prostate exam, I guess it was inevitable that I have one but that doesn't mean I was ready for it. I can't believe that in this day and age with all the technology that man can't find a better way to check a prostate than to have stick his finger........ Oh well it's done and I shouldn't dwell on it. Our friend Norman Olson, the older man that is such a character is back in the hospital with pneumonia, we went to see him and he was doing better but not for sure when he will get out, will have say a prayer for him. Then there is Mike Malouff, his rejection is better but he is still in the hospital taking steroids and being observed. Donna & I had lunch with him & Shellie his sister and he is really ready to get out of the hospital and get on with his recovery, I can understand the impatience, but we can only go so fast and we all have to find our own pace and take it a day at a time. We found out that another member of our evaluation group named Mike Gunter had his transplant last week and we saw him & his wife yesterday, that makes 4 of us from the same group and he said there were 2 more still in the hospital, that just blows my mind. i have asked other patients how many of their group were there and nobody else has anyone or can even remember who was in their group. Well I guess that's all for now, thanks again to everyone for the prayers & thoughts, I guess I'll probably wear out both knee caps just paying ya'll back in prayer LOL.
Love always Mike & Donna

7 Weeks and Counting Down

Well another good clinic, no changes even though the Dr. kinda wanted to make a change but decided to let things ride till Tuesday. My shortness of breath has gotten less severe with the reduction of the Rapamune but is still there, the Dr. thought I needed more time to see if the med change was working. I have to see a urologist on Tuesday to address the other problem. We went to a nutrition class between lab & clinic and it was packed, which is good all the "family" was there. Norman, the older man was there but was having a real breathing problem and had been in the hospital taking intervenes antibiotics for his respiratory infection. Mike Malouff had some bad numbers and was sent back to the hospital to do some testing. The Dr. told Mike he was rejecting and will treat him with large doses of steroids to stop the rejection then go back to the other meds. I hate that he is having these problems but he is in a good state of mind about it and that helps. We think we have next week then the following Tuesday then we should be able to come home, the Dr. said a week and a half, we'll see. Well that's about it for now, thanks again for the prayers & support.
Love Mike & Donna

6 1/2 Weeks, Still going

The lab was full yesterday morning which is good, slow but good. We saw everybody which means nobody was in the hospital. I was so glad to not have to go back to "Roberts 14" to visit a friend whom had had a relapse or some other problem. My test results on my thyroid were normal and the urine test was negative so the Dr. decided that the Rapamune (rejection med)could cause the shortness of breath so he cut the dose in half, it's only 2 mg once daily but if that's the problem then we'll see if 1 mg will do the job and give me back my air. He also requested a chest ex-ray and is showed nothing. He thinks the up all nite peeing thing is my prostate, oh great that's just what I wanted to hear, oh well if a urologist can fix it and I can sleep all nite it will be worth it. Like I said all our "family" were out of the hospital and most were doing good, Mike Malouff was a little leary about saying he was doing good and he had to go do a biopsy after clinic because his numbers were out of whack, haven't heard from him yet on that issue. There is an older guy Norman Olson whom is quite the character, all the nurses know who he is and most of the patients, anyway he is having some breathing issues also. We say him early just after lab and he was winded and couldn't talk but later when we say him he was cutting up and being Norman. Mike Cooper was doing pretty good, hasn't put on any weight yet but he is eating. Brother Bill is having eating issues, can't get his apatite back and that is hard on you believe me, He's a surviver though and with all the prayers and support he'll make it. Well that's about it again thanks for your prayers & support, we hope to be coming home in about 2 maybe 3 weeks. Love to all Mike & Donna.

Great Week

I'm a little late on this post, but I been busy. Clinic was good even though I lost a couple of pounds, I also had some lower numbers on my liver so the Dr. upped my neoral (rejection med) from 125 mg twice daily to 150 mg twice daily. He also did a thyroid test to see if that is what is causing my shortness of breath and a urine test to see if there is a reason for so many late nite visits to the john. I feel good except for this inner temperature thing which keeps my cold all the time, and when I get real cold I have a shortness of breath. Brother Bill got out of the hospital and is doing ok, he did such a fast recoup the first time and this time it si going slower so he has a little problem with that, he'll be fine I think. Mike Cooper had a big smile on his face when I saw him and is obviously doing much better. Mike Malouff is still in the hospital but he is going to start eating real food again on Saturday and maybe out by Monday. Donna & I went to San Antonio on Wednesday and met my friend Monty Guitar Tyler and his lovely wife Pam, and they welcomed us into their home open arms and hearts filled with love, just like I expected from Monty. We had great BBQ and just visited it was wonderful. Then Kenneth & Suzie came down on Friday and we went to Shreveport where Kenneth & I went and saw Mike Zito, he put on a great show and came and sat with us at the break. We bought CD's and got autographs and it was really fun and entertaining. Well that's about it, it was a great week, till next time love Mike & Donna.

Same Old, Same Old

Well it was another routine clinic day, not much change. I did lose 2 pounds but I am not in danger at 171 lbs. so the Dr. didn't have much to say about weight. My blood pressure is still a little high but everything else looks normal even factoring in the chemo. The hospital has split the tuesday clinic into 2 days (tuesday & wednesday) as there are just too many of us right at this time so I hope that is why we didn't see Mike Cooper & his wife yesterday. We did stop an see Mike Malouff and he had another surgery, the anti-rejection drug ulcerated his lower intestine and it twisted. They found and repaired it and Mike looked good this morning and said he feels much better. He may be out of the hospital by the end of the week. Bill Milan looks better every time we go see him and thinks he will be out of the hospital by the end of the week also. I think that's about all there is to tell until friday, so thanks again for the support & prayers. Love to all Mike & Donna

Week 5

I can't believe it has been 5 weeks already. Clinic went good as usual again, I gained 7 lbs. give or take a pound or 2. The Dr. was very pleased with this as am I. I have some blood pressure problems again so I got another pill added this week to control that. I also started to feel what I would call normal again this week, for a while I felt like I would never be normal again but I guess that too will pass, thank God for that. I have good news about Mike Cooper, after his operation he was back in general population most of last week and yesterday he looked pretty good. Brother Bill is still in the hospital but was looking better than he did tuesday, we may see him again today. Mike Malouff had a set back, nausea set in and thursday evening they went to the hospital and were admitted. Mike had to have the tubes reinserted into his stomach again to drain it, he said it was better than puking and Patty said last night that he had drained lots of stuff and the swelling had gone down, we will see how he is today hopefully it isn't serious enough for more surgery. Well once again thanks for your prayers and support for me , Donna and my new extended family here. Till next time we Love ya, Mike & Donna

More Progress

Lookout big "D" Mikey is behind the wheel again. Clinic went good again yesterday the Dr. put me back behind the wheel, he lowered the neoral (rejection med), no sleeping pills & only 2 ultram (muscle relaxers) instead of 3. I now only have to take meds 3 times a day instead of 4, no more bedtime meds. My second chemo and the nurse said the first treatment sometimes caused hair loss, well my second treatment didn't cause any hair loss or nausea. There is a member of our group named Bill Milam and he is a preacher and he had a blood flow problem and wound up back in the hospital last friday and had to have 3 surgery's, the last 2 were for bleeding. He was transplanted in January which would have put him close to his 3 months, now he starts over again so if you have room for another name on your prayer list please put Bill on it, he and his wife (Georgaetta) have said many prayers for all of us in the group and he has been a great support to many of us. Mike Cooper was operated on again on friday for bile duct repair and we didn't get to see him yesterday while at the hospital but his wife said he was doing ok even though he had had a bad nitght, so lets say another prayer or two for Mike & DeAnn, the care givers are a very important part patient recovery and don't need to be overlooked especially for those whom are having problems. I could not have made it without Donna and thank God she was here with me to help me through this. Well that's about it till friday or till something exciting happens.

Week #4

Well yesterday was 4 weeks since the transplant. I am feeling good most of the time but still have a bad day every now & then. The clinic went well this time except I lost a couple of pounds so I have to take megestrol to increase my appetite and I have to take one more rapamune (rejection drug) than before. Donna & I sure are home sick, hopefully we can come home in 4 more weeks, at that time I only have 1 clinic a week so I can go home & drive back here 1 day a week. Update on our friend Mike Malouff, he is doing great and may get out of the hospital today (saturday). Update on our friend Mike Cooper, he went back to the hospital yesterday evening for his 3rd operation, please say a prayer for him. Thanks to everyone for the prayers & support it really does help me in my time of need. We love you all, Mike & Donna.

First Chemo

Well yesterday was another typical day @ the clinic, all was well no change in meds and another "your doing fine" from Dr. Randall. We did see Mike Cooper there (he was transplanted the morning that i was) and he has to go back for his 3rd surgery, so if any of you have room for one more name on your prayer list add him please, thank you. My first chemo went fine, it was an I V push which means they had to stick me again,but that doesn't bother me anymore, and while the I V of saline was running the nurse injected a syringe full of chemo. I didn't feel sick afterwards nor do I today but I lost a bunch of hair on my pillow and in the bathtub. I was told the amount of chemo was small and should not cause a hair loss, we'll see. Donna & I slipped off to Shreveport after my chemo treatment for 2 nights just to get away and see how I handle travel, I did fine. Mike Malouff was doing fine yesterday, we saw him in the morning and he is looking good even though he thinks he's dieing, been there done that. Well that's about it till next time.
Love Mikey & Donna