In My Shoes

There & Back Again

2010-01-26T13:17:00.000-08:00

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.

2010-01-10T07:59:00.000-08:00

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!

2010-01-01T13:17:00.000-08:00

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

2009-11-25T06:38:00.000-08:00

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

2009-10-31T16:52:00.000-07:00

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

2009-10-20T14:32:00.000-07:00

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

2009-10-19T17:00:00.000-07:00

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

See the Surgeon Monday

2009-10-17T05:03:00.000-07:00

Fiona is feeling better and we actually went to the movies last night and had a good time. She hasn't gotten the blood culture results back yet, nor the results on the whether she had the swine flu or not. They are in but the tx (transplant) coordinator didn't know how to read them and of course her liver doctor was not in the office this week...think he was on rounds.

Fiona goes to the transplant center on Monday and we are excited to see the surgeon again. He will give us his interpretation of the last round of tests and let us know what they will be asking for as far of exemption points. I must say we are both excited to go this time. Usually we just hate going because we only hear disappointing news. Now that we have the surgeon on her side, we are excited and know someone is really fighting for her.

After this last hospitalization it is becoming very obvious that she is getting sicker and sicker. Anything now is putting her into a crisis situation. Even the ER doctors (TEAMS - lots and lots of doctors) were shocked that someone who looks so normal could be so sick. I think my complaining that once of month she is in the hospital or in ER is just the beginning. For someone like me who tends to under react, I am going to have to be more on my toes.

Whatever the "bug" was that Fiona caught is was a bad one. We all ended up getting it to one extent or another and we were all on Tamiflu! Poor Mary-Jane is still really struggling and having immune problems is really making it worse. If anyone gets this stuff, please know how contagious it is and use extreme precautions. The hospital is assuming everyone with any of these symptoms it is automatically swine flu.....treat now and find out later!

I'm trying to find out if you get it, can you get it again? Also, we need to know if Fiona really had the swine flu and if so does she need the swine flu vaccine? They tried to give her the flu shot in the hospital and I told them not until she feels better. I want to be sure the symptoms and problems she was having were under control before adding another unknown factor. She can get it in the doctor's office next week.

Swine Flu Information:
The only portals of entry are the nostrils and mouth/throat. In a global epidemic of this nature, it's almost impossible to avoid coming into contact with H1N1 in spite of all precautions. Contact with H1N1 is not so much of a problem as proliferation is.

While you are still healthy and not showing any symptoms of H1N1 infection, in order to prevent proliferation, aggravation of symptoms and development of secondary infections, some very simple steps, not fully highlighted in most official communications, can be practiced (instead of focusing on how to stock N95 or Tamiflu):

1. Frequent hand-washing (well highlighted in all official communications).

2. "Hands-off-the-face" approach. Resist all temptations to touch any part of fact (unless you want to eat, bathe or slap).

3. *Gargle twice a day with warm salt water (use Listerine if you don't trust salt). *H1N1 takes 2-3 days after initial infection in the throat/nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don't underestimate this simple, inexpensive and powerful preventative method.

4. Similar to 3 above, *clean your nostrils at least once every day with warm salt water.. but *blowing the nose hard once a day and swabbing both nostrils with cotton buds dipped in warm salt water is very effective in bringing down viral population.*

5. *Boost your natural immunity with foods that are rich in Vitamin C (Amla and other citrus fruits). *If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption.

6. *Drink as much of warm liquids (tea, coffee, etc) as you can. *Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.

Seasonal flu and 2009 H1N1 flu: similarities and differences
These two flus aren't really that different. A lot of what you already know about the seasonal flu applies to the H1N1 flu (swine flu).

According to the Centers for Disease Control and Prevention (CDC), most people recover from the seasonal flu and the H1N1 flu on their own, without medical attention.

Use this handy chart to spot symptoms and find out what you can do to lower your risk of catching either flu.

Seasonal Flu 2009 H1N1 Flu
What is it? A contagious respiratory illness caused by the influenza A or B virus. Occurs during the regular flu season, usually in winter. A contagious respiratory illness caused by a strain of influenza A virus. First detected in the United States in April 2009, it has occurred throughout the summer, and will likely continue throughout this winter.

SIMILARITIES
Symptoms Fever, cough, sore throat, body aches, runny or stuffy nose, headache, chills, and fatigue, and possible diarrhea and vomiting in children. Same as seasonal flu, plus some instances of diarrhea and vomiting in adults.
How it spreads Passes between people through coughing or sneezing, via germs in the air or on infected surfaces. Same as seasonal flu.

Prevention
Wash your hands often with soap and water or an alcohol-based hand gel. Avoid touching doorknobs, desks, and other surfaces that might be contaminated. Stay away from people who are coughing or sneezing. Cover your cough or sneeze with a tissue and throw away the tissue. More prevention tips... Same as seasonal flu.

Treatment
If you're experiencing moderate symptoms, try over-the-counter medications such as Tylenol or Advil, and get plenty of rest and fluids. More home treatment tips... Same as seasonal flu. If symptoms worsen, contact your personal physician or health care practitioner.

DIFFERENCES
Who's at risk? Seniors and very young children are most likely to catch the seasonal flu. Pregnant women, seniors, and people with chronic health conditions are at increased risk for complications. Children and young adults are most likely to catch the H1N1 virus. Pregnant women and people with chronic conditions such as asthma, diabetes, and heart or lung disease are most likely to be hospitalized with the flu. People 64 or older appear to have a lower risk of catching H1N1 flu.
Peak season Usually occurs in late fall and winter. Those affected may spread the virus one day before symptoms develop and up to seven or more days after becoming ill. Has occurred throughout the summer and will likely continue into the winter.

Vaccines
Physicians recommend that everyone get a seasonal flu vaccination to protect against the regular flu. A separate H1N1 vaccine is being developed. The vaccine should be available for distribution in October or November.

Finally Home with Few Answers

2009-10-11T18:24:00.000-07:00

Fiona was discharged and at home. She is feeling better but not totally well. Going to take a few more days. The doctors are still not sure what she had but we do know that the virus/bacteria (?) caused her to get an inbalance of magnesium and potassium, probably causing the chest pains and the more significant prolonged QT. So she will finish off the antibiotics and Tamiflu at home now. The new direction is if she gets sick or isn't drinking or eating she has to go in for an EKG to check her QT rate.
Peggy

Saturday Update

2009-10-10T19:37:00.000-07:00

Fiona is starting to feel a little better. Her labs are coming out of the critical ranges into her normal low ranges. The preliminary on her echocardiogram showed no fluid on or around the heart. I think with all the aggressive treatment, anitbiotics and tamiflu, they have stopped whatever is going on. She is still in the hospital and won't come home until tests come back and she symptom free. She also still needs the MRA of her lungs, which we missed yesterday. Of course it is the weekend, so not seeing her regular doctors. Will probably not know much until Monday.
Thanks for everyone for their prayers and concerns.
Peggy

Sick

2009-10-08T20:54:00.000-07:00

Fiona is in the hospital with unknown etiology at this point. Possible causes for her illness are pneumonia, bronchitis, swine flu, who knows.....she is in complete isolation and will be kept there until she has less symptoms. Her white blood count and platelets are at critically low levels. Her prolonged QT rate of the heart is much more prolonged and I heard pacemaker thrown around again. Poor thing....she is sick.
On the family front, we all started Tamiflu tonight. Got to nip this bug before it gets us. Won't know exactly what is happening with Fiona for a few days...waiting for cultures and other tests to come in. MRA of her lungs for tomorrow is cancelled but might be able to reschedule before she gets discharged. Sad thing: NO BEDS..she has been in ER since yesterday afternoon. Chalk another night I spent in a folding chair. I think I have a permanent crease on my forehead from leaning on the bed rail! Someone needs to invent an inflatable chair "liner" that includes chair arms, a footrest and a pillow for when we parents have to make do with a folding chair.
Peggy

Busy as a Bee

2009-10-04T12:42:00.000-07:00

Fiona is more or less recovered from her toe surgery. She has a doctor's appt. on Tuesday for her migraines. So far she is tolerating the beta blocker! This is good news on a lot of fronts: it helps (we hope) the migraines, it helps the long QT of her heart AND it helps lower her portal hypertension (they have been trying to do this for a long time and she was unable to tolerate the meds.)
She completed the small bowel study and she doesn't have short gut syndrome. I thought the films were really clear (hahaha, MOM's view). The radiologist brought us right into his room and went over the films right there with us. He could see where all her surgeries were and there are some loops missing but that is to be expected. He also could see where her ileal atresia was that she was born with (missing the end of the small bowel area) but again he didn't think that was a problem at all. She has enough bowel that we don't need to be concerned about that at all! YAY

On Friday she goes for the MRA of the lungs. They are looking to see if there has been any changes in the AVMs that are there or if there are new AVMs that we need to be aware of. She continues to cough up blood on exersion so she takes it pretty easy most of the time. So this is a very important test!

Then on around the 16th she will go back to the transplant center to meet with the surgeon. Hopefully we can get more answers then and hear what exactly they are going to ask for in exemption points. The surgeon doesn't want to wait any longer than he has too, so things are moving really quickly now. Then shortly afterwards she will see her liver doctor.

Peggy

On the fun front, Don and Fiona are going to a concert at the Fairgrounds tonight! I'm sure they will have fun!

Toe Surgery Went Well

2009-09-26T08:11:00.000-07:00

Fiona's ingrown toenail surgery went well but she is in a lot of pain. Because of her liver disease her toenails are becoming very thin (like paper) and deformed causing ingrown nails that are very painful. The podiatrist thought he could just go in and even it out but ended up taking her complete big toe nail off and part of the nail on the toe next to the big toe. In a month he will evaluate the other foot.

On another front, Fiona has an abdominal CT this week and the MRA of her lungs in a couple weeks. There is a still conversation about sending a scope down into her small bowel but her liver doctor is really not happy with this idea so discussions are going on. There are some real risks with this procedure and not everyone can safely do the procedure. Very concerning but will do what her liver doctor feels is best.

Peggy
This one is for Fiona! No one else would appreciate Happy Squirrel Chewing Gum

More GREAT News!

2009-09-18T16:08:00.000-07:00

Fiona was presented at committee at the transplant center this morning and the TEAM agrees, she needs a transplant sooner than later. So the next step is to complete two more tests: an MRA of her lungs to see if the damage has progressed and an endoscopy of the throat, stomach and small intestines to see how much bowel she has left. Fiona will then meet again with the transplant surgeon. I cannot believe that the transplant center is going to fight for her now! This is absolutely the best news and what we were hoping for! So excited! Thank you, God!

Peg

Warning: Don't Pass Out!

2009-09-16T20:12:00.000-07:00

Fiona saw the electrophysiologist (specialized heart doctor) and her QT rate isn't as prolonged. He really thinks the problem is from the malabsorption problems due to her liver disease and intestinal problems. He doesn't want to do anymore tests, especially the genetic ones because if they turn out positive it might preclude her from having a transplant. So, the prescription is simple: he is going to add a beta blocker to her pile of pills she takes daily and she is to continue the massive doses of potassium and magnesium -- with the warning: DO NOT PASS OUT! If she passes out for unknown reasons on the beta blocker then he will have to run all the electrophysiology tests and the discussion of an implanted defibrillator (pacemaker) will be seriously considered. (see picture- not needed at this time) Right now he doesn't feel she is at risk for sudden death so we are now on a wait and see plan. She is avoiding all meds that could affect her heart, she will be taking the medications prescribed and we will see how she does once she has her transplant. More and more is resting on the success of the liver transplant. So good news! Things aren't perfect but much improved and she is out of immediate danger heartwise.

On transplant front: they are presenting her Friday and they are going to try to request exemption points hopefully getting her to a MELD of 30! (range 7-50) At this level she would get 10% or more added to her score every 3 months just for waiting at that level. So hopefully the committee will agree Friday to ask for these exemption points and that the national organization will agree! Fingers crossed and prayers being said. Again, we won't know anything for a least a month...but at least we finally found someone who is willing to help her and fight for her.

Peg
Doing the Happy Dance! (Hopefully our hopes won't be dashed!)

YES! YES! YES!

2009-09-15T17:40:00.000-07:00

Fiona got an email today for the transplant center surgeon. He has reviewed the medical information and file plus spoken with her liver doctor. They both agree she needs a transplant sooner than later. So Friday, the surgeon is going to represent her to the transplant committee at the transplant center and ask for exemption points to get her higher on the list. Fiona's case will then be sent to the national organization and they will have to review her case and see if they will grant her the exemption points. If all goes well, she should hear in the next month or so, if these points will be allotted to her. Then, if all goes well, they are hoping she will get a transplant in the next 6 months to a year! It is just too hard to wrap our minds around this right now, but someone agrees she is much sicker than the point systems indicates. We are witnessing a miracle right before our eyes....we hope!

Of course, in working through this process and talking her to liver doctor and transplant coordinator, they kept asking her if she is ready for this. Asking does she understand 5% of the patients don't make it through the surgery, telling her she could die. Fiona said she understood but at some point decisions have to be made and her life quality is so diminished that she has to do something to improve her life. (Very hard conversation to have for someone so young! Thank you FRIEND for helping her through that rough conversation.)

There was discussion about her intestinal issues and the surgeon believes Fiona has very little intestine left. Not sure how he determined that. I know she has had a lot of intestinal surgeries but wasn't aware that the surgeon took out that much....so this may be a premature diagnosis. But at this point they are not considering intestinal transplant as well.

Praying this all comes to pass and that we can see light at the end of the tunnel. She has been very strong through all of this process and I am very proud of her, just so sorry she even has to go through it. So keep your fingers crossed that the people who have the power will see how much she needs a new liver!

Peg

Still Hoping for Good News

2009-08-29T10:05:00.000-07:00

The word right now is the transplant center has a different operating system for their CTs and they have just figured out how to access the CT data discs that were taken at our hospital. The team will review the 3 phase liver scan and will meet early next week to re-evaluate Fiona's status. The surgeon said she has not been forgotten! They are working on her case! :)

Peg

Liver Doctor Visit

2009-08-19T22:23:00.000-07:00

Let's just say there were a lot of smiles and phone calls that need to be made. He was very pleased that this particular doctor has taken an interest in Fiona and her problems. Nothing was specifically said in the report the transplant center sent to him but they are still going to conference about her. So we wait....fingers crossed....hoping, hoping, hoping. On the down news, Fiona is still not allowed to drive. Her potassium and magnesium levels are still too low so more drugs. We will take anything we can get to make her feel better.

In just a little under a month she will have been listed for a year. Maybe soon they will MEAN it! As of today there are 155 adults with the same blood type waiting for livers at our transplant center. One of those is Fiona! 59 are at roughly the same level of need. 4 are inactive so there are roughly 151 waiting.
Peg
Even the cat is smiling!

Miracles Do Happen

2009-08-10T16:38:00.000-07:00

There is a truckload of nuts on the way!

The appointment with the transplant center went really well today. Fiona saw one of the top surgeons and he was very interested in her case. (He was dragged in on the case because he wasn't suppose to see her today.) He said they had been ready to say she was too early for transplant but after hearing all of the problems she was having he thinks she needs a transplant sooner than later. He will order some tests and look over those that were just done. He examined her and explained that some of the strange red marks she is getting are from liver disease. He agrees no one really knows what is going on inside her but he said HE will find answers and let her know.

He said the Kasai, the liver bypass, was meant only to last a couple years. Only about 10% get more than that. Fiona had gotten 21 years and he said he has seen people in their 30s with the Kasai, however, in the end they need a transplant. He agrees that even if her lung problems aren't liver related, a new liver would make that problem less of a problem (but he thinks they are liver related.) He also said there is no reason to let things get any worse. She doesn't need a bowel transplant or lung transplant on top of all of this. She just needs a liver and soon.

HE GOT IT!! She is unusual and she just isn't textbook. He said there are some loopholes no one has thought of before he is going to use. UM....her being on TPN for the first 18 months of life. It causes liver damage. Also her atresias -- bowel, gallbladder, liver.

We were telling him that Fiona is having a lot of bowel issues now. He said NO ONE is suppose to do surgery on her now unless they are going to give her transplant at the same time. Her liver will not withstand much more. So the solution: give her a transplant. AND.................we said we might have a living donor but we don't want to do that if we didn't have to. He said we wouldn't have to! YAY

All I can say......and I must admit I'm speechless....I know, I know it is rare...is AMEN! Miracles do Happen! Thank you, thank you, thank you.

Peggy

Transplant Center Re-evaulation

2009-07-27T18:11:00.000-07:00

Fiona will be going back to the transplant center for re-evaluation on the 10th. We are fully expecting them to drop her from the transplant listing because of the biopsy which is very frustrating. I just don't understand why they keep telling us that biliary atresia is so different in each patient but then tell us Fiona doesn't follow the textbook definition so her problems can't be from the liver disease. There is no way on any planet this is OK. There is no way bleeding lungs are acceptable and how can they say with upmost certainty that the liver isn't causing this problem. Her lungs never bleed before. Praying the experimental drug comes on formulary VERY soon. It is her only hope now and we are going to have to fight to get it.

What makes me even more crazy is that an appointment is required. So our insurance is going to pay thousands for them to turn her down and I am going to have to miss my student's first day of school. This whole transplant world is just so ugly. So many people are caught in its madness. Lives are being destroyed. I hope research will solve the organ shortage one day. This is just not fun. Even knowing this was going to happen doesn't make it any easier. Getting tired of the fight, trying to convince doctors there is something wrong, that the problem is serious. One day I'm going to contact every doctor that ever said there is nothing wrong, oh it is ok--you can manage it. I'm tired of appointment after appointment and told there is nothing and then all of sudden they find out what is wrong and it is a big emergency. I know we have a good team of doctors with our insurance but outside, the transplant centers are just so difficult. It is a very cold and heartless environment where people's lives are just not valued. As I was once told, not everyone is entitled to a transplant. You have to live the best you can and last as long as you can. What makes Fiona's life so invaluable to them? That just isn't right!
Peg

Vacations are Fun

2009-07-24T09:26:00.001-07:00

Fiona, Don
(boyfriend) and Lauren at the Jelly Belly Factory
The crazy hats are required and a well worth wearing. It is a great FREE tour and the Jelly Belly Sample Bar is a must!

We had a
wonderful time on our quick vacation up north. We stayed with Lauren and Jill and were able to really relax. We took Fiona gambling for the the first time and she came out with $.02. We went to the Jelly Belly Factory and got some Belly Flops (reject Jelly Belly Beans). Sutter's Fort was really interesting but it was so hot we wilted quickly. They had people giving informational talks which was really interesting. Coming home we stopped by Monterey Bay Aquarium. They are doing an Sea Horse exhibit that is wonderful! Well worth seeing.

Then we stopped at Hearst Castle and that is always a fun place to visit. Did you know that you can have your wedding there for a mere $10,000 for less than 50 people? What a bargain! Would love to go back and see the night tour they are now doing in period costume.

Finally, a quick visit to Grandma. She looks absolutely wonderful after a heart valve replacement and pacemaker surgery. So glad to be able to give her a big hug. Home looked good. We had been away long enough we were glad to see it when we drove up. Now the work from a vacation. Unpacking, laundry and trying to get rested from the vacation!

Life is good
Peg

It Sucks

2009-07-09T11:06:00.000-07:00

I am so sick of being treated like a child. I'm 21yrs old and yet everyone seems to treat me like a kid and I mean Everyone. I can't wait to move out and be on my own. Myabe then I'll get some respect. I just want to be able to do the things the way I want to.

Just When You Think Things are Getting Better

2009-07-03T08:22:00.000-07:00

Fiona saw the endocrinologist yesterday and her bone density problems are getting worse. In fact, the doctor entered the room and said hello and then immediately asked if she had had any recent broken bones. Not a good start! He has increased her calcium and vitamin D in hopes of saving her bones. She is too young for the powerful drugs they give menopausal women. The side effects are just too severe for a young person. For some reason drugs like Fosamax can destroy the jaw bone. Strange that something that is to improve your bones can destroy bones. Now the problem with all of this is, the extra calcium is causing more kidney stones. So one problem leads to another then leads to another. Fiona has so many things to deal with, but to look at her you would never know.

When she was in the hospital this week, the ER doctor saw there was extensive medical history and asked for a quick run-down: What organs are involved? OK here is what we know today: Liver, spleen, lungs, heart (we think due to medication), kidneys, intestines, bones and brain processing due to poisons in the blood stream. Liver disease is a horrible thing that doesn't just affect the liver. It is truly an all encompassing disease and that slowly destroys everything. AND, she is still not sick enough! You will hear this over and over again from families with a loved one waiting for the transplant - They aren't sick enough. Sometimes the problems get too heavy to carry.

We have wonderful friends who support and love us. We have some who simply don't understand and think we aren't doing everything possible or that our doctors don't know what they are doing. Fiona has a remarkable team of doctors. (We have changed until we got to a COMPLETE team that works for her.) The problem isn't our doctors. The problem is the world of transplant, the world of ADULT transplant. There just aren't enough organs to go around and therefore, standards were set of which Fiona just doesn't met and will probably never met until she fails a great deal more. So she is living with a very devastating disease and trying to make the best of what she has. We are searching and pushing for answers. The doctors have ordered so many tests and have looked under every rock they know to look under. We have even looked under rocks that weren't there! Truly, this team is as frustrated as we are. They are having to MANAGE all her symptoms and problems. They know the seriousness of this situation. Fiona is very precariously balanced and it would be very easy to tip her completely over. It doesn't help when you think something has gotten better to learn that it hasn't. It's even more frustrating when people tell you "THEY would not ever let this happen."
Peg
Looking for answers

Just Stop

2009-07-02T22:19:00.000-07:00

MyHotComments

There have been something said about how I am handling my health and the care that I receive. I understand that some people maybe be concerned about these things. But to go off and say that I am not doing the right thing and I am causing my own problems is quite rude. For those of you who feel that way you have no idea how much I have fought and how much I have gone through. Being concerned and telling me that how I am handling things is wrong are two different things and the second one is really hurtful. I've even heard these things from parents who's children are going through similar issues and I just think that goes to show how much people really don't understand. My doctors and I are all really frustrated about things and it's nothing and I mean NOTHING they are doing wrong. So really think people need stop and think about what they're saying before opening their mouths. If you don't have anything nice to say then you can just shut up because I don't want to hear it. Besides it is my life and my decision. I'm doing the best with what God gave me.
Fiona

Visit to the hospital

2009-06-30T14:24:00.000-07:00

Fiona started feeling really poorly Saturday. Her abdomen got really HUGE, to the point it was making it hard to breathe. She took the medications the doctor gave her in hopes of clearing the problem. She woke up Sunday feeling a little better but still really sore and uncomfortable so off the ER we went. They did a CT and had the surgical team consult with her. She was admitted and watched to be sure her systems were now working. If this problems continues, then the surgical team is going to have to go in and remove some of the massive scar tissue in her abdomen that is causing problems. We hope that won't be necessary. At this point that is a really scary thing to be avoided at most all costs. She is home, got a shower and is sleeping in her own bed. There is nothing better!
Peg