There & Back Again

Just got back from hell this week. Hell meanning the hospital. I am so glad to be home even though I'm exhausted beyond belief. If any of you reading this hasn't heard yet, I was in the hospital for 5 days. Even though the hospital has become pretty much a routine thing for me, sad to say, this experince was like no other. I went in Thurs. morning with excruciating abdominal pains. And at first they were just going to blow me off and everyone kept saying it was just gas. Well it wasn't it turned out to be much more serious than that. It turned out that I had a complete bowel obstruction in my small bowel. They brought in the surgrey team and at first the surgeon was going to just operate to clear out the obstruction but once they looked at my labs they realized they couldn't. So what was the next thing they could do? They ended up giving me and NG tube which is a tube that goes in through your nose down into your stomach. At first I thought oh hell no! Then I said to my self I've been through worse, how bad could it possibly be? Well I was wrong so wrong, I have to say having an NG tube rates right up there with the worst thing that I could've possibly had done. Oh, and they had to do it two times because the first time I was trowing up so much on it that it actually started coming out through my mouth. So here I was with this what felt like a giant tube down my throat (which believe it or not they gave me the smallest adult tube) and I was throwing up on it (and throwing up a little bit of blood)crying because I was in so much pain. And the shitty thing about all this the doctors refused to give me ANY kind of pain medicine. That was the first time I really ever asked myslef "Why? What did I do to deserve this?" I know it sounds selfish, but I have never in all my life felt like that. I litterally felt like my body was giving out on me. I litterally felt like I was physically having to fight minute by minute just to pull through. And the worst thing was it took them almost 2days before they fianlly gave me pain killers. Untill then I was just crying my eyes out. And on top pf having an NG tube they later decided to give me a catheder. Which you feel so exposed when they do that, but that wasn't the worst part. The worst part of that was that I actually started to cramp on top of the catheder. I litterally felt like if there was a place where you could stick a tube they did it. On top of all of this they still were talking about doing surgrey. So the entire time I was thinking, " I have to go through all of this and I still may have to go through a major surgrey, NO?!" I am just so glad that I made it through, that they didn't have to do surgrey, that they got rid of all my tubes, and I'm thankful that I got to come home! I have never felt so physically exhausted though and my body feels like it's been through WWIII. But I would like to say thank you to my family and everyone who been by my side.

Doctor's appointments went well this last week. The Endocrinologist is really concerned about her bones.  Her calcium level has improved but her levels are at the bottom of normal.  She already takes 3600 units of calcium at day!  He was going to increase her calcium until he realized she has kidney stones so for right now he is keeping everything the same.  She is well covered for hormones, vitamins and calcium for osteoporosis.  After transplant, which he wants to hurry up and get done, he will put her on Fosamax and try to rebuild some of her bone density.  He is concerned, since after transplant her bone density will get worse because of the steroids.  :(  That was not good news but at least they are actively watching and planning the next stages.

Pulmonologist was pleased that she has been more active with no coughing up blood.  He feels her lungs have stabilized with reducing activity.  YAY!  Good news.

Fiona is still waiting to hear from the transplant center. The coordinator said they had committee meetings Friday and she was going to ask the surgeon what was going on.  She hasn't heard anything either, so maybe Monday we will know more.  Got our fingers crossed things are progressing.

Happy New Year!

As 2009 just flew by, we are hoping 2010 will be the year that Fiona gets her liver transplant.  Her doctor has not presented her to UNOS, the United States Organ Procurement Organization, as of yet.  The holidays have slowed down the process but as we come into the new year we are hoping he will present her very soon.  She is doing ok right now. The effects of liver disease are becoming more and more visible but she is learning to live with the new challenges. 2009 was very challenging and devastating for many.  We are hoping 2010 will be a better year for everyone.  

Happy New Year

Peg

Fiona and her boyfriend, Don.  Christmas in Palm Desert 2009

Happy Thanksgiving

MyHotComments

Happy Thanksgiving to our friends and family

Fiona hasn't heard much else at the moment about getting exemption points. The reports and data have not been sent to UNOS. The transplant coordinators are talking and apparently all the information is at the appropriate places for doctors to review and then write up the report but this has not happened yet. So she waits. She was hoping to hear about getting the exemption points this month but that doesn't appear to be a possibility now. Maybe after the first of the year.

Then she heard her liver doctor is out on medical leave for a month. We were really worried but found out it was a sports injury so all will be well soon. Whew!

Fiona found out the experimental drug she took early this year as been totally taken back by the pharmaceutical company. I guess there were some serious life threatening cases of blood clots. Since she had the severe leg swelling during the trial, the pharmaceutical company is requesting her ultrasound. Sure glad it wasn't related and that Fiona did very well on the drug. I hope they can tweak this drug enough to continue the trials because it was a really good product that could make a huge difference in a lot of people's lives.

Happy Thanksgiving and thank you for all your prayers and good thoughts.
Peg

Happy Halloween

Fiona saw the liver doctor and the pulmonologist this week. Everything is pretty much status quo. All the tests results have been sent to the transplant center and they should be sending all her information to UNOS next week. UNOS has 30 days to respond to the request for exemption points. The transplant center is asking for her MELD to be raised to 18. If this is accepted, then every 3-6 months (depending on how UNOS rates her) her score will go up 10%. If all goes well, she will be in line for a liver in 6 months and be close enough to actually be offered a liver.

While going to the pulmonology appointment, Fiona fell down a flight of stairs and got really bruised. She is OK and she did manage on catching herself so she didn't go down on her face!

In talking to the liver doctor, Fiona asked him why he keeps asking her if she really wants a transplant. She again told him that she wants to get better and what they are doing is good, but it is just a bandaid. The liver doctor laughed when he heard how the first surgeon that came at the last visit wanted to take out her lung/spleen and do a liver bypass. He said there are liver patients, there are biliary atresia patients and then in a category all by themselves is FIONA! He said it is so hard to know if the liver transplant is the right way to go or not but he said if she doesn't get one the next couple years are going to be pretty scary! Wow, now that sets you back on your heels, doesn't it? That is one of the first times I have heard this very calm man worried. So fingers are crossed and hopefully UNOS will see how important these exemption points are.

Hope everyone has a Happy Halloween!
Peggy

Calling the Surgeon

Everyone agrees we need a direct line to the surgeon that is on Fiona's side. We agree. In fact, last time we saw him he gave Fiona his phone number if she needed him. Well, when she was having problems she tried to call him directly. It turns out he didn't give her the right number, it wasn't his office but the OPERATING ROOM! She was so embarrassed. She mentioned it to him yesterday and the other doctor broke up laughing. The surgeon laughed and said that was probably a good number. That is where he is most of the time! Too funny! "Doctor, hold up on that surgery for a minute. Fiona is calling with a question!"

Peggy

Swine Flu Confirmed

It is confirmed that Fiona did indeed have swine flu. Oh well, she is better and that is what counts.

The appointment at the transplant center was interesting. It started off really upsetting, with seeing yet another new doctor that hasn't seen her before. The tests had not been reviewed or seen by the doctor and he was just not impressed with her presentation. Yes folks, back to the whole you don't need a transplant, let's take out your spleen, maybe do some artery bypasses.......um..................So Fiona told him that all her new tests were sent over and he left the room to go see them. While he was gone we could hear them talking about her...couldn't hear exactly what they were saying. THEN, yes, THEN the doctor who saw her last time and wants her transplanted sooner than later, walked into the room and the whole appointment changed. Yes, they are asking for exemption points. They are going to ask for her MELD (rating points) to start at 18. This puts her in the area of being offered an organ, though on the low end. Secondly, this surgeon has the whole surgery planned out. He is going to do it in stages. The first surgery will be the transplant of the liver. Then 3-7 days later he is going to work on her bowels, taking out all the scar tissue and being sure everything is working and where it should be.

It was funny, the first doctor totally changed his mind on her treatment plan while standing with "her" surgeon. The transplant coordinator was all in agreement. Amazing how one doctor/surgeon is making such a difference while the rest of the team is just clueless. Thank goodness we have this guy on her side/team otherwise they would have taken her off the list this summer.

Expecting to hear her actual MELD score from UNOS (the US organization that oversees organ transplants) in about a month.

Peggy