June 28, 2012

Thursday, June 28, 2012

 

Hi Friends:

 

It has been a very long time since I have given you an update on what has been happening on the health front.  First I want to say, that I do not presume to be important enough that I warrant any kind of attention sent my way or that I am worthy of any kind of recognition.  I am responding to close friends and family who are concerned about me and some of the health challenges that I have had over the past several months.  I am not writing because I think I am any more important or my problems are somehow more important than the challenges that we all face on a daily basis. But I and my family are constantly asked “How are you doing?”  This is a time-effective way to respond.

 

With that being said; since my last update, spelling and grammar aside, the reason for the long delay, was that things were going good.  I have felt strong and even shot my first even-par round of golf.  I have been able to walk nine holes.  I have had the problem of really low blood sugar while practicing or after a good work out.  This is something that I will have to adjust to as time goes on.

 

I now have three very good doctors that I see on a regular basis.  Each one asks me for a blood test before each visit.  One of my recent tests concerned Dr. Box, who is my transplant doctor.  He requested two tests which I have had before.  One was another liver biopsy and the other was a test where they probe my liver to test the blood flows and condition of the liver from the inside.

 

The results of that test were just received and the transplant team at the U of U had me on their agenda for their weekly meeting.  It seems that the pressure inside my liver is elevated and I have one of my bile ducts seemed to be slightly restricted.  They believe the reason for this could be long term rejection or a return of the sclerosing cholangitis which is what caused my liver failure the first time.  I was pretty bummed until they said, “So nothing to worry about right now." Don’t you love the way doctors talk?

 

Things were going good until last Tuesday.  It started with a sore in the roof of my mouth.  I didn’t think too much about it.  By Wednesday sores had spread inside my mouth and the left side of my face. I was in quite a bit of pain.  I went to my son in law, a dentist, who prescribed an antibiotic mouth wash.  After one day things got worse.  I went to his office for x-rays, which showed nothing.  I also called a good friend who is an oral surgeon.  He was out of town at the time.  I did get a medication that numbed my whole mouth but by then my jaw and spots on my head became very sore.

 

After taking time out during his vacation, he called and told me to go to the emergency room.  The ER doc there determined I had Shingles, which I thought was an old person’s ailment.  Turns out, I am an old person.  After some really, really good drugs for three days, things began to improve.  As of today, I think that I have turned the corner.

 

The problem with having your whole mouth numb is that you have no sense of taste and nothing sounds good to eat.  If you want to go on a crash diet and quickly lose eight pounds, get shingles.  My problem is that it took me about eight months to put those pounds on.  I know some of you are jealous, but I would think of another way to drop pounds if I were you.

 

Right now things are going good again.  As is times past, I am so grateful for your prayers and good wishes.  I am thinking I should be good for a few years.

 

Gratefully,

 

Mike

 

January 30, 2012

January 30, 2012

I have been reminded by a friend that I have not posted an update on my health and condition for quite some time. This is actually good news for me, because there has not been anything really newsworthy to report on. But it has been just before Christmas since my last note to you.

I have had about four weeks of giving myself insulin before each meal. In addition, I have been testing my blood sugar four or five times a day. It has been an adjustment, but I feel like I have some control of my sugar levels now. My appetite has returned and I am doing my best to eat normal meals. I have appreciated the greater energy that comes with more normal blood sugars.

I actually have been enjoying eating again. However, I have not been able to pick up any significant weight. I know everyone wishes they were in this boat, but believe me it is not all it’s cracked up to be. It might be my messed up head, but I kind of like being on the thin side. It’s the concentration camp look I don’t like very well. I have been going to the gym and I am getting some strength back. I feel like I am ready to take up golf again. I wonder if I will still have to give Scott four shots aside.

I have a positive feeling about the weeks and months to come. If I can keep things rolling I will be able to get back to somewhat of a normal existence. I really enjoyed the holiday season, as it gave me a chance to touch base with good friends and family. I am truly blessed.

Mike

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