December 23, 2011

December 23, 2011



This is a lengthy post I won’t ever know if you don’t get through it all.

Since we last met our sick hero, we have had quite an eventful adventure. We met with Dr. Terry Box at the University of Utah medical center. It was very hard to be on the campus of that school up north. Anyway, Dr. Box is a real professional. He had gone through all of my records, which you can imagine is voluminous, and remembered us from my first transplant at LDS Hospital. It is comforting to know that he has also had a liver transplant himself. The problem is, you recall, that this was only a consultation visit.

As it turns out Ann’s company is changing insurance carriers. And wouldn’t you know that Dr. Box is in this new network, which means we can continue to see him on a regular basis. “When a door closes a window opens.” We are excited to be able to continue with him.

The point of the visit was to see if there was anything that he could tell by reading my records. He came up with basically the same conclusion as the other doctors. That being; I am definitely in liver failure, without a known cause. The good news is they will transplant old guys like me. He did say that getting off the Immuran, which is the drug I have been on since my last transplant, is no more than a shot in the dark. We will follow up and see him again in February.

Since that visit there have been lots of adventures. Late on Saturday night, after fighting stomach trouble, “it emptied itself out in a quick manner," (hope you can figure that out), I stood up too fast, Ann will tell you I passed out, I am not sure, I fell and hurt my back. My SI joint was completely locked up. I could not move. We happen to have the best physical therapist in Utah county, Rogan Taylor living in our ward. Ann asked him at church if he could come over and check things out. After about ten minutes of agony, I started to feel pretty good. Thank you, Rogan.

This was good because the next day I had scheduled a test that people our age should have. The name of which starts with “Colon" and ends with "Oscopy." I couldn’t eat for twenty four more hours. I would have thought after my Saturday cleansing that this would be no problem. I got there Monday and was told it had not been quite enough hours and to go home. We rescheduled for Friday. This procedure showed nothing abnormal. Two years before I do that again.

In the meantime, because of shoulder pain, I went to see Dr. Scott Jackson. With X-Rays and a physical exam, he determined that I needed a shoulder manipulation. This can be painful and you are normally put under anesthesia. With him working right across the street, and going above and beyond the call of duty, he came over during my Friday procedure and did his thing. Thanks,Scott.

By the way, Scott and Ruth Ann have been called to be Mission Presidents coming this July. I am a little nervous about him leaving because he has been such a great friend for everything medical.

All that fasting and cleaning out began to take its toll. Thanks again to my daughter Melissa, we set up an appointment with my primary care doctor. After checking my blood sugar and a couple of things, they sent me straight to the hospital. It turns out that my diabetes was completely out of whack. I have spent the last couple of days at Utah Valley Regional Medical Center. They game me fluids and put me on insulin for the first time.

Have I said that I hate the hospital? I feel much sicker while there. With compressions on my legs, heart monitors, things inserted into you where things should never go, and you have to ask for help just to get up and use the bathroom. But, I got home yesterday armed with long and short term insulin and a new understanding of what I need to do to keep my blood levels under control.

I feel good today and hope to never see the inside of another hospital until I get that call for another liver. Again I am amazed at the love and friendship which is all around me. Don’t ask me about it because I have turned into a big boob. Thanks to all of you. I wish you a special Christmas where our Savior’s spirit abounds.



Mike

November 2, 2011

 
November 02, 2011
 
This might be my last update for a while.  We had an appointment with the Transplant Center yesterday.  Our initial thinking was that because their team has not been able to come up with anything definitive, that they might be helpful in getting us an appointment with the Mayo Clinic.  As you know we have been negotiating with our insurance company to let us go out of the network and go to the Mayo Clinic.
 
Our doctor from yesterday talked to our customer advocate and felt like they had come up with a possible explanation for my symptoms.  He called it “Veno Occlusive Disease”.  The cause may be a side effect from one of the medications that I have been on since my first transplant. (Almost 19 Years Ago) What happens is essentially the closing off of the smallest vein systems in the liver. Both of my most recent biopsy’s showed some clogging within the liver but nothing big enough to show on an x-ray or MRI.
 
As a result of this conclusion the insurance company feels like we should stay here in Utah.  We told them that we wanted to get a second opinion, and they are making arrangements for us to see a Transplant Doctor at the University of Utah.  We know this doctor because he was one of my doctors for my first transplant.  They will get my records to him and he will evaluate the tests and procedures and make suggestions as to treatments.  We don’t really have any other choice.
 
The bottom line is, I have gone off the medicine in question, but it could take three to four months before we will see if there are any changes.  The problem in my mind is, if we wait three or four months and it is not this VOD, then we have wasted a whole bunch of time again.  Hopefully, I will start to see improvement before then.
 
Just because I won’t be writing much for a while, that does not mean I don’t want to hear from you.  One of the best parts of this whole thing is being in touch with family and old friends.  We still want to get together, maybe for some “Poop On Your Neighbor”.  Again thanks for all your positive thoughts and prayers on my behalf.
 
Mike

October 28, 2011

Oct. 28, 2001
 
I just thought I should give you a quick update.  The transplant team met yesterday and could not come to any conclusion about what is causing my symptoms.  Again, frustration is what I am feeling most right now.  I think that we have come to the conclusion that we need some additional opinions.
 
It has been suggested that we try to set up a consultation at the Mayo Clinic in Phoenix, AZ.  We are now working toward that end.  There are several hurdles to overcome to have our insurance agree to cover this consultation.  We are working on that now.
 
As a follow up, soon after our united prayers went out to my niece Krista, the doctors found an antibiotic which seemed to do the trick.  Thanks to you, she is on the mend.  Again thanks for your thoughts and prayers on behalf of myself and my family.
 
Best wishes,
 
Mike

October 26, 2011

Oct.26, 2011



After my last update, I mentioned that they now want to look at my heart to see if anything is amiss there. Yesterday I went to the heart and lung clinic and they did a right side catheter procedure. This was supposed to check the pressure in the right side of my heart to make sure the blood wasn’t being slowed down into my liver. They put the catheter in through the right side of my neck and into my heart.



As you might have guessed, my heart is strong and healthy, pumping blood at an above average rate. Absolutely no problem there. We can’t blame the heart for any of my symptoms. The big question now, is “Where do we go from here?” The surgeons and transplant doctors are meeting tomorrow to determine what the next course of action should be. My opinion is no more worthless and expensive tests. I will admit I am somewhat discouraged at the lack of diagnosis. We are considering a couple of things which would entail finding other doctors at other locations. There are problems with that as well, but I won’t get into that.



For now, could I ask you to redirect your thoughts and prayers to my Brother Dave’s handicapped daughter Krista who is very sick with pneumonia and an infection? She needs the help right now more than I do.



I consider good friends and family the most important thing in my life. I really appreciate all of you for your thoughts and prayers. I will let you know when I have something else to report.



Mike

October 14, 2011

 
I thought that when I next reported that I would have some news for everyone.  At the transplant center, yesterday, a committee of doctors, nurses and surgeons met about my case and the results from my biopsy.  Their conclusion was:  “We don’t know “.  Guess on the positive side, there is nothing life threatening going on with my liver.  By the same token, are we going right back to where we were in the summer?
 
The transplant people now want me to have a right heart catheter or angiogram.  They go into my heart with a wire which is placed into a large vessel in one of my legs.  By TV screen, they guide the wire into the right chamber of my heart.  They can do a number of things once they get in there.  I think the purpose is to check the blood flow from the heart to the liver. They can also open closed off vessels in necessary.
 
I can’t believe we are back to looking for something else.  Anyway, I will do what I can to help in a diagnosis and cure.  I continue to feel pretty good and will try my best to stay positive and do what I can to get better.
 
Frustrated beyond measure; Regards,
 
Mike

October 11, 2011

 
October 11, 2011
 
I thought a quick update was in order based on the last few days. As I said in my last update I mentioned that I had an appointment with the transplant center in Salt Lake.  The appointment of Friday was interesting.  I was told that all my symptoms point to liver failure, but the last couple of biopsy did not show that.  In case you are not familiar with a biopsy the poke a needle into my liver and it brings out a small piece of the liver that can be examined.
 
The last two that I have in the summer did not show anything special was happening with my liver.  After that we continued to try and find causes for my symptoms.  So they made an appointment for another biopsy yesterday.  Who goes into a procedure like that hoping that it shows my liver is failing?  Anyway, that was my mindset because they will not put my name on the transplant list unless the biopsy shows something.
 
When we were about to start the procedure they found I had too much fluid to do the biopsy safely.  So they drained three liters of fluid off my abdomen.  As before, it was like giving birth to a six pound baby.  The losing of six more pounds was secondary to relief I felt having that fluid gone.  After which they did the biopsy.  The results will not be known for about two days.  Here’s hoping it turns out bad.
 
Thanks for all your encouragement and best wishes on behalf of me and my family.
 
Mike

September 30, 2011

I thought the events of the last few days would be worth and update. Tues afternoon Ann and Melissa came to my office and did an intervention. They kidnapped me at took me to the American Fork Emergency Room. I suppose the continued loss of weight and the lack of energy was their rational. The emergency room couldn’t do anything for me, which I suppose was part of the grand plan. They checked me into the hospital where I have spent the last three days taking on fluids and getting nourished through a regimented diet of high protein and carbs with high calorie counts.

While I was there, they have doctors who only work on patients that are in the hospital, I was lucky enough to get a very gifted and OCD doctor who finally took all of my tests and procedures over the last year and was able to put things together.

As is turns out, I don’t have any one thing, but several things. Which is why any one doctor just looking at one or two symptoms would not pick it up? The bottom line is my liver is going bad and needs to be replaced. I am going to plug into the transplant people next week and get the process going.

In a way it is a relief, however, another way, I am not too thrilled to be going through this again. I am told however, over the last twenty years things are a lot different, by that I mean a lot better and a lot easier on the patients. They have the medicine thing down and the recovery times are much shorter.

Assuming I can get on the list in a timely manner, I should get back to normal again a few months after the surgery. I again, thank you for all you nice thoughts and prayers on my behalf. I will keep you posted and things progress.

Mike

September 15, 2011

I thought that a short update was in order after the last couple of days. I thought that we were well on our way to recovery. As many of you know Natalie and Riley Waddups were married in Honolulu last week. Ann and I went over and spent a week. I did pretty well while there, but the flight home and the couple of days that followed were pretty brutal. On Tuesday we went to the doctor and asked specifically for something to be done about the fluid buildup.

Yesterday, we went to the American Fork clinic and they drained 3 liters of fluid from my abdomen. (There goes another six pounds). I felt like I have give birth to a six pound baby. To say the least, the pressure is gone and I fell pretty well today. They will test the fluid and see if there is a way to keep it from coming back. I have been put on a medication which should help. For now, I have got some of my appetite back and hopefully I can begin to put some weight back on.

Thank you for those of you who have call and expressed your best wishes. I am hopeful we are at the end of this journey.

With love, Mike

August 23, 2011

We have had some new tests and some new information that I thought you might be interested in.

I have visited an internal medicine doctor to figure out what is happening with my stomach aces. As you recall I have Gastro Paresis which basically causes my digestion to be restricted and I feel full all the time. He has put me on a medication which should help in my digestion. After almost a week, I have to be honest; I can’t tell that much difference. If fairness, the best medication for this situation has detrimental effects of some of the med’s I am already on. The cyclosporine is essential for my liver transplant and it will not work with this medication. So he gave the second best choice, I hope to see results very soon. I am still losing weight that I hope will stop soon.

He also gave me a urine test which showed a urinary tract infection. He put me on an antibiotic which I hope with help me feel better.

Today I went and picked up my CPAP machine which is suppose to help me sleep. I am told that this could be one of the things which will have the most noticeable benefit for me. I will sleep with a mask and a machine with push air into my nose and mouth while I sleep. It also has a humidifier which should keep my throat from drying out.

I am also on a water pill which is taking care of the retained fluid in my feet and ankles.

Here is hoping that something actually will begin to work so I can regain some strength and stamina. The upside is that I am getting request to pose for advertisements which are promoting feeding the under privileged which shows my ribs and boney shoulders and back. So far I have not accepted the requests.

I can continue to feel your thoughts and prayers in my behalf. I feel so lucky to have such great support from family and friends. I hope soon you won’t have to be concerned about me. Until later lets get better.

Mike

August 16, 2011

I have taken both of the sleep tests which had been scheduled for a few weeks. If you have not gone through one of these, it quite an experience. I have nineteen connections to my head legs and chest. Then they tell you to just go to sleep. A lot easier said than done. The first test showed that I had the sleep apnea. The second test a week later, which was Sunday night. This time I had the same connections plus the CPAP mask on. Then they told me to go to sleep. It was pretty difficult. But results from the second test will be presented in a couple of weeks. Most likely they will put me on the CPAP for good. If it will work, I am willing to try it.

I have also have an appointment to see a Gastro-Intestinal Doctor tomorrow morning who I hope will be able to tell me what is going on with my stomach. I will let you know what he says.

Again, I want to thank all of you for your expressions of love, prayer and hope. It really means the world to me.

Regards,

Mike

August 5, 2011

It has been a while since I have sent an update, so I thought I better get on it.

I had my most invasive test yet, yesterday. I was at the IHC Hospital in Murry yesterday and they have a test that they cut a whole in my neck and put a probe into my liver. The idea was to test to see if the valves and blood flow through the liver was working properly. After waiting four hours to be taken in, they found one vein that was slightly collapsing and they stretched that one but it would not stay stretched. However, this was a minor thing. Everything else looked just fine. So here we go again another test another thing that looks good. I guess I should be grateful, but we still do not have any explanation for how I feel.

On Saturday night I go in for my sleep test finally. I will have to leave Ann’s 40^th high school reunion to be there on time. I guess she will have free reign to talk to all her old boyfriends. I am hoping that this sleep apnea test will show something I can look to.

Once that test is complete, I plan to hook up with a gastro-intestinal doctor who can take all of my test results and go through them and become the lead doctor.

I actually have felt a little better since my last update, I am still expecting to become fully recovered so this old car can get back on the road and not just slow country roads, and I want to be on the freeway in the fast lane.

Again thanks for your thoughts and prayers.

Mike

July 20, 2011

I have now had my EKG which showed the heart is working how it should. One thing of interest from speaking with the heart specialist he asked me if I have ever been diagnosed with sleep apnea? I said I had just completed a test. He suggested many of my symptoms could be attributed to this. Before I get into that, I also had another liver biopsy. I don’t have a full report yet, but the radiologist who took the sample seemed to think everything looked fine.

On Monday, I got the results from the sleep apnea test and it was confirmed that I do indeed have it. The next step is to go to the sleep center and stay overnight while attached to wires and other things. This will just confirm the diagnosis. If that is confirmed they will fit me for a CPAC which looks like the mask they use to give patients oxygen. This device mixes oxygen with humidifier and keeps all your air waves open and keeps your breathing regulated. I am told it will really help get better nights sleep. As I said before the heart specialist also thought this was the root cause at least for my lack of sleep and there lack of energy and always being sleepy. I am hoping they are correct.

This should bring you up to the minute on what is happening with me. It sounds like I will live and with decent sleep may even get back to a somewhat normal routine.

Again thanks for your thoughts and prayers, I am sure they all helped.

Regards,

Mike

July 15, 2011

When we last checked in our old car, it wasn’t running great, but there was no news which could explain the symptoms we were having. Since that time I have had reports from the CAT-Scan which I had last week. The report is that there are no masses no clogs in the heart, liver or lungs and stomach. It did confirm the gastro paresis which we already knew about. The treatment for this is done by diet. I need to eat more meals in smaller quantities.

In a way, it is good news, but I really would like an explanation of what was the cause for the problems in the first place. I begin a test today for sleep apnea. With a consultation on Monday after doing some testing over the weekend, we should know if this can help explain things. I have also been asked to schedule an EKG on my heart and a liver biopsy next week. I don’t know what other tests we can still do.

Here’s hoping one of these next tests will reveal something of merit. Again, I feel your prayers and best wishes. It has been one of the really good things that have come from all of this.

Mike

July 7, 2011

I have spent yesterday and part of today doing tests. I am pleased to report that things may be looking up.

I visited the transplant center yesterday and had a chest and abdomen X-Ray. I then did a consult with a heart and lung doctor. He reported to me that the fluid I previously had in my lungs is almost all gone. If fact there is so little fluid now that he would not worry about it. That was great news. I also did a breathing test which showed nothing abnormal. Both things were a relief to hear.

The doctor also suspects that my condition may have something to do with sleep apnea. This is an inability to get good restful sleep throughout the night. He believes that lack of sleep at night has everything to do how listless I have been during the day. Of course that means another test. However, if it is something so simple, that would be great, because there are easy solutions to that problem.

This morning I went and had a cat-scan after injecting dye into my blood stream. This test should show any problems in my stomach and liver and my upper intestinal tract. I have not seen any results from that test yet. I will keep you informed.

So as it sits right now, the old car is still in the garage, but it is not leaking oil on the floor. That does not mean the old car is ready for a race, but it is still running if not at maximum speed.

Again, thanks for all your thoughts and prayers on my behalf. I look forward to reporting good things from the scan this morning. Until then, I am grateful to all of you.

Mike

June 30, 2011

I am writing to those of you have been so concerned and worried about me. I am grateful for great friends and loved ones who want to know what is happening and what is going on. Believe me I have felt your good thoughts and prayers on my behalf.

I though a more detailed explanation of what we have been doing to figure things out. If I can relate myself to an old car sitting in your garage and it is leaking oil onto the floor. You know there is a problem, but don’t know why the oil is leaking. But you know something is happening that should not be happening.

Last August I had extreme pain in my shoulders and hips. To the point I could hardly walk and could not rollover in bed and at that point, I thought the tow truck should come and haul the old car away. I visited several doctors and did numerous blood tests, had x-rays and anything I could think of. As it turns out I had what is called Polymyalgia Rheumatica. (PMR) It is a temporary arthritis condition that was treated by oral medications. I am happy to say this is just about completely cleared up.

However, this PMR triggered blood test results; I even had a liver biopsy at the transplant center in Salt Lake . At that time it showed the liver was in pretty good shape. However, this turned up a few other problems. As many of you know, I got to where I had absolutely no energy, and would fall asleep at work and was a little out of it mentally. It felt similar to the condition I was in before I had my liver transplant in 1993. This concerned me. I went back to the transplant center who wanted to do a MRCP. You know one of those awful tests where they put you in a tube and take pictures of your insides.

This test showed a couple of other concerning things. It showed plural effusions. This is med speak for I am leaking. There is a lining around your heart and lungs that is filled with fluid. It turns out that this fluid is leaking and congregating in my abdomen. I don’t know what the treatment is or the cause of this leaking. It seems that my transplant doctor doesn’t really know either. I have an appointment with a heart and lung specialist next week. Hopefully, I will know something further.

This MRI test caused the doctors to order another test. I had an endoscopy on Tues. morning. This test sends a small camera down your throat into the stomach and upper part of your intestines. It can take pictures on its way down and see the inside of your stomach and other organs on the way. Well, this test showed a couple of other problems.

This showed that my stomach is not digesting food how it should. This is probably the reason I am not ever hungry or what to eat anything. It is a pretty good diet if you need one. But I have dropped about 15 pounds in the last two months. This is called “Gastritis” or “gastritis perius”. I don’t even know how to spell it let alone explain it. It has something to do with my diabetes however. I took several more blood tests while I was in for the endoscopy. These test showed that my liver function is a little off. We will have to address those next week while I see the heart and lung specialist.

Well, that is pretty much brings you up to date. I can tell you, that I actually feel better than I did a week ago. It hasn’t helped the golf any, but I am trying. I also want to thank all of you again for your concern and best wishes. Believe me I am touched by all the attention, but I would rather not be getting it. I will try and keep everyone posted as new results and tests come in.

Mike