Home, Alive and Free!

My liver surgeon came to say goodbye yesterday and left us with this:

"Don't think that you don't have something seriously wrong with you because you do. Most people with Portal Hyptertension don't have near the extent of internal problems like you have and most of them that have clots, we know why and we can fix them. We could keep doing procedure after procedure to try to "fix" you, trust me, we love these type of "problems", but lets just see what happens naturally. Your portal vein is open and I don't know how but your lucky b/c it looks great in there right now. Try to take it easy when you get home for awhile, but we will follow this situation up with CT's, MRI's, Ultrasounds, and bloodwork for at least a year and hopefully you can lead a normal long life. We will keep you on blood thinners for at least a year, we can't keep you on them forever b/c then we risk something else going wrong. I believe it is from your Pregnancy so as long as you don't do something crazy and get pregnant, you should see your next 50 years."

We left the hospital and the drive was emotional. I just held my husbands hand and cried tears of joy telling him thankyou for being at my side during the past week and a half of this crazy journey in our lives. Everything seemed to take on a new meaning, the trees, being free and being alive!!! I couldn't wait to get home to see my children, hug my mom and dad, and rejoice for being alive. I couldn't stop crying, its just so hard to explain all the feelings and emotions and "stuff" I have been through. Like I said before, my life will never be the same.

I picked my kids up and Karlie just clung to me and it felt wonderful! She kept lifting my shirt b/c she knew I had an owie on my stomach and last time she saw me she was scared to touch me. She was afraid of my IV's in my arms, afraid of hurting me. I told her she didn't have to be afraid anymore b/c mommy is better and she was so happy, and just kept smiling and hugging me. Luke, he just runs around, oblivious to what has been happening in our lives. I am thankful that they will never know and won't remember this time in their lives. To them it was just a big party living at their grandpa and grandma's house's. To me, it felt like an eternity, I missed them so much! I was afraid and thought that I was going to die and never see my children again.

We came home as a family, and it felt wonderful to take a bath! Sleep in my bed with my children in their rooms next to me. I had peace, and I am so happy to be home!!!

I praise you Lord for I am fearfully and wonderfully made!

I have an amazing new appreciation for the body the Lord has given us all. It is crazy! The things we can do and the ways the body works all together is infathomable to me. I have learned so much in so many ways. When you are diagnosed and become ill with something, you immediately go through so many different emotions. For a long time your life is spent on a rollercoaster, so much of it is unknown at first, you don't know what to do. For over a year now I have struggled to find answers, now I believe we are coming close to the end and it sends an amazing peace, a sense of freedom, a sigh of relief, and tears of Joy. For the past 2 months I have experienced "the other side" to my life being a patient:

• had a liver biopsy
• upper endoscopy
• colonoscopy
• 2 more upper endoscopies involving rubber banding of the large veins in my esophagus with more to come in the next months
• swallowed a camera pill
• had 4 CT's
• had 2 Ultrasounds
• 3 MRI's
• spent 41/2 hours in a cathlab suite with laproscopic canulization (rotor ruder)of my portal vein and embolization of my varices
• been sedated for hours and a total of 7 times
• spent 9 nights and 11 days in a hospital
• literally slept away days of my life without ever getting out of bed

The Doctors are all speechless at how busy and active I have been before this without knowing that all this "stuff" was going on inside my body, my body was in panic mode inside without me even knowing it and created a whole new defensive system to keep me alive. Isn't that amazing!

It seems like a terrible dream to me. Something that hopefully will be in my past now, something that will fade away into a distant memory. I can move on with my life, my children ( I cannot wait to come home to you and be your mom agian!!!) I cannot wait to be Lisa, (wife,mother,sister,daughter,friend). I am on a mission everyone. Look out, Lisa is ALIVE, I am well, and I am going to live like no other! I love who I am, the Lord has made me perfectly in His eyes and therefore I rejoice!!!!!! Thank you Lord, I am on my knees with thankfulness and praise for making me and holding my hand through this all!!!!!

Lets not rock the boat anymore!

I had a CT last night around 6pm exclusively of my liver and later that night one of my surgeons came to see me and told me heavenly news. The CT looked better than anyone thought it would and everyone was surprised at their meeting.

The clot in my "main portal vein" is almost completely gone thanks to my radiologist that cleaned it out last week, the flow is all open in there. Hopefully after time my spleen will start decreasing in size now that the flow is all open and they don't want to do anything at this time to my splenic veinous system. Like he said "we don't want to rock the boat anymore!". They could keep having a hay-day with me and keep doing more and more procedures to keep fixing me, but for the time, I am doing great, my labs and liver functioning is going back in the right direction, and we need to give my body time to heal and see what happens before we decide to ever do anything else. Maybe nothing will ever have to be done again, if my spleen goes down!

They believe I became jaundice from the procedure done last week, the CT shows my liver bruised, slightly bleeding, and swollen where they entered that portal vein. Also, the collaterals/"new veins" that did create in there compressed my common bile ducts restricting the flow to my Gallbladder but they think that over time this will also heal. Some of the Doctors want to do an ERCP on me now, but my surgeons think we need to wait. I agree.

Why did this happen? I now have a whole team of hematologists working on my case. I have fired my hematologist at home, fired everyone at home, and I am sticking with everyone at U of M! They are running tons of blood work, looking for anything that could have caused this all. We may never know. Some think Lukester, some think my colon surgery 8+ years ago, we don't know. Thats what makes it so hard for everyone to understand and that much harder to fix the problems. Is it going to come back? I will stay on Blood thinners for minimum 6 months and then we will consider going off them if all blood work looks good. Scary b/c we don't know if that will open the gates for it to come back....

I am staying for another 24 hours, one more night and hopefully I can come home!!!! I was so happy last night I cried! I just held my blankie from my kids and cried tears of joy. Give thanks to the Lord for He is good, His love endures forever! I praise the Lord for all He has done, for bringing me here to U of M, for all of my Doctors here: Woodside (floor Doctor who is here everyday for a month! Sonnenday, Engelsbee, (liver surgeons)
York and Lewis (liver Specialist), Dasika (the interventional radiologist), Lisa Glass (Hematologist).
I thank the Lord for my parents, Steves parents for taking awesome care of my children while I have been gone, my sisters for being with me, my wonderful husband for holding my hand throughout this entire journey (he has been awesome and knows so much about me and the medical field now! hopefully this is it he says! :) Thank you friends and family for your thoughts and prayers, I love you all!

I can't wait to come home!!!!!!

Update! We're at U of M again

Monday afternoon I became jaundice after my procedure with complications and my eyes, skin, and urine were very dark yellow/orange, buises covering my body. We were instructed by U of M to go immediately to the local ER. We spent monday night 8pm-Tuesday 10:00pm at Metro and no one was helping us. No one came to explain anything to us, we were being thrown all over between Dr.'s that had no clue about my situation, and Steve and I were both losing hope....It was crazy! We felt like no one was helping us and that no one knew what to do with me. Finally I called U of M agian from my hospital room and they called the hospital and had me transfered by ambulance back to U of M. I NEVER want to ride in an ambulance again! It was cold, very bumpy (the last thing you want when you are in pain), noisy, and even raining on the inside (yes we had a leaky one!)

We arrived here at U of M last night at 1-2am, and things are beginning to be hopeful again. The Doctors, nurses, EVERYONE has been so Awesome to me, so loving, so understanding with our frustration, and they have soooo many Dr's trying to solve the mystery. They do care here, they are doing all they can, I had an Ultrasound this morning, x-rays, lab work, different fluids to treat my jaundice, I have to have another CT, and I will be staying for sure yet tonight. The Doctors are all meeting around 5pm and we hope to have some more answers.

Please keep us in your prayers! I miss my kids so bad, I even have a"blankie"of Lukes to make me smile and comfort me, resembling both of them b/c my kids LOVE their blankies! This has definitely changed my life forever.
Love Steve and Lisa

I am home

Well, I am home. This is the first time I have really been awake all day and I am going to try to quick say alittle while I can.

After 4 1/2 hours spent in a cardiac interventional cath lab suite things looked much worse than had anticipated. The first 2 options were not even possible nor even attempted, so I didn't get poked there as well. He started off doing a veinogram, injecting xray dye into my veins to give him a better look. This is when it was discovered that my clot had progressively gotton worse, and that there were now more clots further up the river in all the smaller veins leading into my liver. He had only one option to make a few incisions directly above my clot on my abdomen and he did get into that portal vein and cleaned out the clot as best as he could. He also discovered more varices that we even beginning to seep blood from them, so he embolized and killed as many of them in there as he could. He could NOT place a stent b/c of the length of damage to my portal vein, it was longer than he thought and by placing a stent it would close off the now necessary other veins feeding my liver (the other onese are blocked with clots now so we cant close off more). The internal intestinal flow has become a huge river and he is happy about that BUT the flow is all going towards my spleen. My spleen is getting bigger and bigger and something must be done about it or all that he has done will not help.

He didn't do anything while in there, but my surgeon and this radiologist will now AGAIN meet with the board of U of M physicians on tuesday, and will AGAIN get the opinion of 20+ surgeons. I like that U of M does this and it assures me that the right thing will be done for me, not just one Doctor thinking that he is the only answer. What does this radiologist think?

He told us that the blood supply going to my spleen has to be cut off, not all of it, just some of it to get that spleen to shrink down! If you cut some of the veins going to it, it won't be getting sooooo much blood supply and hopefully it will shrink to normal. My spleen is functioning fine so taking it out is not the answer he believes.... He also thinks that the "BIG ONE" might have to be done.

He wants to see how my body adapts to all the changes going on inside of it right now, I need to heal, and he did alot more than he thought he would and therefore I am in major pain. We left the hospital as late as we could to see how I would tollerate home pain meds alone and last night I was VERY close to telling steve to take me to the hospital. As long as I can knock myself out I am fine.

I have alot of questions, alot of things don't seem clear to me, I cannot even begin to explain how I feel about having more things done, I have been sedated 7 times in the past 60 days and have been living life out of body......I just get really down sometimes, and when I am in pain, it makes it that much worse. I miss my kids and can't wait to hug them again!

Dear Family and Friends,
The week has finally arrived! Steve and I will be taking off in the morning for Ann Arbor for an enjoyable day, doing some business ( I love watching my husband work!), taking some clients to lunch and then off to do a round of golf (hope they all have patience for me! ) We will be getting a hotel in Ann Arbor for the night b/c we need to be at the hospital at 7am on Thursday. My procedure starts at 8:30. At this time I don't have alot of information as to "What" they will be doing but what I do know is this:

It is an interventional Radiology procedure, not a full blown surgery. If this works, then hopefully we never have to do the "big one". The radiologist has a plan but we don't know what path it will be until we get in my body and try. 1st attempt: through my subclavian in my neck and femoral vein in my leg to get to the Portal Vein near my liver. He wants to get a shunt into that vein and basically "rotorudder" that clot out of there and get my flow going! If this doesn't work then 2nd attempt: going from my side through my liver, again trying to get into this portal vein. If this doesn't work then 3rd attempt, making an incision in my front abdomen directly at the Portal vein.

Why don't we know which? B/c of the extent of the new collaterals, the new veins that my body has created to by-pass this clot in my portal vein is like a major highway now. The veins could cause problems b/c we can't get into that portal vein b/c of all the others in the way.
I have a room reserved for a night. They are currently at 100% capacity, so reservations have been made for one night. Will I need it? If the first attempt works, probably not. If it doesn't, then I will.
What if all don't work? Then we have another meeting with my Gastroenterologist here in GR, the Liver Surgeon at U of M, the Radiologist who did it, and we have no choice but to do a major surgery. Down the road I might have to have the big one even if we do get this done. We don't know and don't want to do the "big one" until I bleed internally from the veins that have been created in my esophagus that I am currently getting "banded" or from one of my intestinal veins that are also getting bigger and bigger.

If this does work, my internal blood flow will go down, the veins internally will shrink in size and may even disappear, my spleen will return to normal, I won't have intestinal pain, and everything that has happened inside b/c of this clot will go away! We will follow up with a year of CT's and Ultrasounds and if all is well, I can quit my Lovenox injections, quit my beta blockers, and hopefully never see a Doctor as a patient agian!!

Please keep me, and my family in your prayers. I just can't stop thinking about my precious babies sleeping upstairs and wish I could be with them, but hopefully someday they will realize mom has to do what she needs to do right now to take care of herself and that they will in the end get their mom back, healthy and we can be together for the rest of my life however long that may be!

Love you all!

Lisa

What is exactly going on with me? This explains it all!

For some unknown reason(s) the portal vein is prone to developing a blood clot. This blood clot usually completely blocks the portal vein. ( mine isn't completely but it also isn't the first one I probably have had)

When the vein is blocked, it causes blood to back up in the vein causing high pressures in all the veins below it. (therefore the need for blood thinners, currently I am giving myself 2 injections a day and blood pressure med's. Even though I don't have high blood pressure, I have high Portal pressure, that is, internal blood pressure on my major organs, we need to slow that pressure down so that I don't bleed internally!)

The condition is medically known as portal vein thrombosis (PVT). In addition, the organs returning blood to the portal vein, like the spleen, get engorged with blood. In many cases, the body attempts to bypass this blocked vein by developing thin walled veins (collaterals). These collaterals are large and appear like varicosities (big vericose veins but on the inside of me) The majority of these varicose veins are seen at the lower end of the esophagus (eating tube) but may appear anywhere in the abdomen. This is why I have to keep getting these veins in my esophagus banded to prevent them from bleeding, in an attempt to make them smaller.

How common is portal vein thrombosis (PVT)?In the US, PVT is a relatively rare condition with an overall incidence of 5 per 10,000 individuals. So why did I get this?

• No liver failure (biopsy confirmed my liver is fine!)
• No cancer (after many tests, nothing has come back positive)
• No blood disorder (all my labs came back normal)
• Trauma or Pregnancy

The Doctors now believe that I got this when I was pregnant with Luke and things progressively worsened after my delivery. Doctors instructions: NO more babies!!!! Thank you Lord for blessing my life with 2 beautiful children.

When you have something wrong with you physically, it is easy to find yourself on an emotional rollercoaster. Yesterday was a bad day for me. I was in pain, didn't feel like eating, was tired, and just sick of having these things done. Its hard to stay positive and cheery all the time.
Then I try to look at pictures like this and realize all the things I should be thankful to the Lord for. My awesome mom who is always there for me if I need her and shows so much love to me and my children and everyone else for that matter!, my grandma who is 89! and of course my beautiful kids who always seem to amaze me at how awesome kids are. I LOVE my kids. And I have 2 of them, the way the Lord planned it for me. They are both healthy, smart, and adorable in a mothers eyes. Then me, I don't have cancer (like once thought), I don't have a incurable disease, I am not dying, and therefore I need to rejoice in the Lord for all he has done! We are truely blessed and I need to remember that! I thank the Lord for all he has given me and Thank you Lord that this journey will also pass and there will be an end in sight!

Banding of Esophageal Varices (Veins)

Today I went in for another banding of the varices (veins) in my esophagus. He said that they looked good (whatever that means) but he did alot more banding this time than last. So far it has been much worse than last time and I even cried leaving the Dr.'s recovery room for the way home b/c it hurt so bad. Last time I left, I couldn't wait to get some food and stopped at Wendy's for a Jr.bacon and fries! b/c you can't eat before your procedure. Today, that is the LAST thing I wanted to do b/c it hurt so bad. I just woke up alittle over an hour ago from taking a long nap and will keep popping more pain meds. It feels like severe heart burn but worse, something I can't explain. As you can imagine, food going down doesn't feel the greatest and I think I will stick to liquids for some time. I just can't believe all this has happened to me, the whole thing is crazy and I can't wait for it to be done. I miss my kids and wish they were home but I need some time alone for the day. Some day they will understand. Besides, being at Grandma and Grandpa's is always fun! Thank the Lord for them!

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University of Michigan Hospital

Today I met with my surgeon at U of M. He was awesome!!!! We met for over an hour discussing my case, looking at my CT's, MRI's....He is the "fix-it" man, but the problem is, he doesn't know exactly what to do.

Some of my friends laugh at me, and it is a long story, but I am a Zebra. Most hospitals are filled with every day horses that all Dr's see, but me, I am a Zebra. The Zebra is the one everyone wants to see b/c it is rare.

On Tuesdays at U of M, a group of board physicians meet to discuss patients that they just don't know what to do with. He is going to bring my case to those physicians and together, a group of at least 20 Dr.'s will decide what the game plan is going to be. The good news, I have time. This is something we are going to monitor for now, until we know exactly what we all want to do and what is going to be best for me. The game plan : Meet with the board of physicians and show everyone he knows my case 2. I have to have a Venogram (a test that will measure the blood pressure outside of my liver compared to that of the pressure inside it) 3. He wants to talk to his favorite Interventional Radiologist 4. I am going to call him next week and every week for the next few months to see how I am doing and what we are going to do will be determined. So far here's our options:

1. Monitoring (do nothing) maybe with my next banding of my varices (veins in my esophagus) my gastroenterologist will see that they are going down in size, decreasing, and the blood thinners and blood pressure meds are working on their own.

2. Splenectomy (remove my spleen) get the pressure internally to balance thus decreasing the pressure on those big veins in my throat.

3. Stent (interventionally) from the inside of my liver past the blood clot (this would be ideal) Possible????

4. Shunt (huge surgery, cutting me open from side to side) connecting my portal vein to my vena cava with a shunt I would be in the hospital for a min. of 5 days and 2 months of recovery. Possibity of death. Then, would it clot agian???? Remember, we still don't know WHY this has happened.

So, I am to live life as normal as I can. NO cardio work, nothing that is going to raise my blood pressure alot, but I can work, I can take care of my kids....Wait.....Haven't I already been doing that???

We were very pleased with this Dr. He was very awesome, informative, sensitive, and gave us peace of mind that he is going to figure out what is best for me. I know I am in good hands there and I feel very confident. We will see!