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My name is Linda and I am listed for a liver transplant at the University of Washington Medical Center in Seattle, Wa. I have been a nurse for 21 years and contracted Hepatitis C from an accidental needle stick while at work many years ago, before they knew it existed. These days I am able to actually do some art work and I also sing and do studio work when I'm up to it. I am very grateful to my Loving Husband who is very supportive.
A side note from Rise'- Linda created our beautiful TransplantBuddies Globe. Visit Linda' M Store where you can buy a Transplant Buddies Tee Shirt and more. Linda's Store.
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Linda M
Member
Username: Petrifiedorgan
Post Number: 59
Registered: 06-2006
| | Posted on Wednesday, August 18, 2010 - 11:34 am: | 
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Hi Risa and everyone else. I just thought I would drop in and say hello. Sorry I have not been around for a while. I think of you all often. I have gotten to the point in my illness that I spend most of my time either sleeping or trying to make myself eat. I'm trying to keep my muscles from wasting, but exercise in the normal way if difficult as each exertion or stretch causes cramping and large charlie horses from toes to buttocks. I'm taking all I can of the supportive suppliments, and they do seem to help. My Meld Score is now 16-17 and they have discovered many varicies along my digestive tract, but luckily, the varicies in the esophogeal area are still low stage 2, so no banding. My spleen is getting a little larger and I have developed a hiatal hernia. Oh the joys of cirrhosis, LOL. Anyway, I still wait on the list for a call, one I think I'm more ready for than when I first arrived here a few years ago. Hubby and I have gone through another change in diet and hopefully, I will start feeling better soon. I am attempting to pick up my paint brush and some of our music made it into another movie. Anyway, my TP center is still doing well with its patient outcome, but they are not doing as many transplants as the donors lifestyles seem to made more livers unhealthy, so it could be another long while before they call me.
I hope you are all doing well. I will try and get in more often to talk to everyone. Bless you all.
Linda M
Linda M, RN
www.cafepress.com/liverart
http://www.uselessmusic.net
Waiting For Transplant
ITS NOT WHAT YOUVE GOT, ITS WHAT YOU DO WITH IT.
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Hostess Rise
Board Administrator
Username: Rise
Post Number: 14073
Registered: 05-2003
| | Posted on Wednesday, August 18, 2010 - 11:43 am: |
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Thank you Linda for updating us
Hi Linda
What a surprise to hear from you. Congratulations on your song being made into a movie. If you can tell us more please do. How exciting!
What kind of diet are you going on? I love food so I want to hear more.
I strongly believe in a healthy diet especially for anyone with any chronic illness. A healthy diet has kept all of my organs extremely healthy post transplant. It amazes me that after 14 years my liver and kidneys are in great shape. I attribute this to my diet. there is nothing else that it can be. I am taking high does of drugs and the healthy foods are taking care of me. 
Please email me and let me know when you get your precious gift.
I am so happy to hear about all of the positives that are happening for you. Our spirit will take us far and wide. I have seen this with many people including myself. You have a very strong and uplifting spirit.
love
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Jackson Memorial Hospital
Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program-Miam Transplant Institute
Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine
Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact Hostess Rise' |
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eccoblue
Forum Leader
Username: Eccoblue
Post Number: 1566
Registered: 05-2008
| | Posted on Wednesday, August 18, 2010 - 06:21 pm: |
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Linda,
Great to hear from you! I missed you!
Hope you get a liver soon!
Love & hugs, Kelli
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Linda M
Member
Username: Petrifiedorgan
Post Number: 60
Registered: 06-2006
| | Posted on Wednesday, August 18, 2010 - 07:24 pm: |
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Hi Rise' and of course Kelli. As far as change in diet, just cutting the glutten, wheat, and sugar as well as cutting back on the nightshades, (potato family) and tomato's. Those things seem to kick up the autoimmune problems that come with HepC like arthritis and fybromyalgia. Due to alot of cramping and charlie horses in my feet and legs, I have increased my Magnesium, Calcium, VitaD,and C as well as Milk Thistle. There are so many yes and no's about the last one, ie; does it really help or not, but whatever, its not harmful and does help with discomfort in my liver area. Maybe a decrease in inflammation. Some believe it protects liver cells. Since I still may have to wait a long time for a new liver (supply vs demand) at this point Im willing to try whatever I can as long as it does not cause my cirrhosis to get worse.
Things have been actually quite boring around here for me since I dont get out much at all. I'm either sleeping or just too tired to interact much so I stay home. My painting skills have taken a turn for the worse due to shaking hands and fatigue, but I'm at least trying. Lastly, as far as the song in the movie, it's the third movie our little group has been involved with musically. Several of the songs are from past choices from our other two and the third is one my hubby wrote called " Michaelangelo". We sing it together. The movie is an autobiography done by Richard Evens, a long time actor, depicting his life and the way his mind works. Not an academy award winning movie, but if you know the man, the movie makes sense and our song is performed during a very heartfelt memory. It will be going to Sundance this next year so who knows.
Kelli I hope you are doing well and are able to finish your school stuff. That can be very draining, but what an accomplishment. How is your liver function doing? Is the ascites better? I emailed you a while back, but did not hear back from you. Let me know if you can.
Rise', wow 14 years. I think of you often, especially when washing my hair. Love the shampoo. Thank you so much for your continued friendship. It means alot.
Take care
Love and hugs.
LindaM
Linda M, RN
www.cafepress.com/liverart
http://www.uselessmusic.net
Waiting For Transplant
ITS NOT WHAT YOUVE GOT, ITS WHAT YOU DO WITH IT.
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Hostess Rise
Board Administrator
Username: Rise
Post Number: 14096
Registered: 05-2003
| | Posted on Thursday, August 19, 2010 - 01:11 pm: |
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Hi Linda
Whenever I eat potatoes, my eyes get very puffy. Probably because I cannot eat just one LOL I am now going to reduce the tomatoes I am eating.
can you tell me where did you learn about this information for your diet. We have many people on this website who are always curious about other diets.
Glad that you love the shampoo.
Great accomplishment with your music. Keep up the great work. Just think about how much more you will accomplish in your future after you receive your new liver. Keep us posted on all you are up to. It is not about the quantity but the quality in our lives that make everything meaningful
love
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Jackson Memorial Hospital
Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program-Miam Transplant Institute
Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine
Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact Hostess Rise' |
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eccoblue
Forum Leader
Username: Eccoblue
Post Number: 1570
Registered: 05-2008
| | Posted on Thursday, August 19, 2010 - 02:20 pm: |
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Linda,
I didn't get your email. 
I'm doing okay as far as reading & writing goes, but
math is a real struggle. I mean I just can't comprehend it.
Something is wrong with my brain because I have trouble with anything
more than simple arithmetic, even dividing & multiplying, fractions,
decimals are a problem for me. Don't know why, but it's a giant handicap!
Being right-brained is okay, but I don't even haver a left-brain at all. Ugh!!!
After 160 paracentesis procedures, my ascites has finally stopped. Tx wise,
I'm doing okay, just some unrelated health problems.
My last hospital visit was surgery for an infectious seroma in my groin. Bad place!
They used a wound vac and it healed up good.
I think about you often and hope you get a liver soon so you can get better! Love, Kelli
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LadyDi
Forum Leader
Username: Ladydi
Post Number: 2420
Registered: 03-2008
| | Posted on Saturday, August 21, 2010 - 03:42 pm: |
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Linda, it is so good to see your name! I am sorry to hear that you are so tired and have the gastric issues. I hope your liver comes soon.
I always think of you when I wear my transplantbuddies world t-shirt.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
My Donation Story
I walk slowly, but I never walk backward - Abraham Lincoln |
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 4722
Registered: 07-2007
| | Posted on Tuesday, August 24, 2010 - 08:43 pm: |
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Linda:
It is so good to hear from you! I am so sorry that you are now at a point in your transplant wait that you don't feel very well and spend most of your time at home. That's the hard part about this transplant journey - the waiting.
Wow! How cool that your music is in another movie. I hope it does very well at Sundance. You are right - you just never know!!!
Keep hanging in there. You know we all love you and support you here. Keep us updated as much as you can.
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Dottie Lessard
Forum Leader
Username: Dottie_lessard
Post Number: 88
Registered: 03-2009
| | Posted on Wednesday, August 25, 2010 - 12:51 pm: |
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Hi Linda,
Congrats on all the music and art success! Keep doing the things you love as much as you can-I admire your spirit, determination and courage to continue living while waiting
Being sick, not feeling like you have any control is so hard-especially for people who truly want to live! I remember, both times. If on the days you really are too tired, too weak to workout my suggestion would to focus on working out in your mind...really. May sound crazy but what our mind believes, our body can achieve. I remember days before my lung transplant where I really could not breathe to make it to my workout room so I would sit or lay on my bed and force my mind to "feel" myself running free with deep breaths, working out with joy and ease. I would force myself to see myself doing this and capture the emoiton-many days it would get me through and many times the next day would be a little easier.
I just wanted to share this and send my well wishes for you to receive your new liver very, very soon.
With care and WELL wishes, Dottie
Dottie,
Author of "The Seven Letters That Saved My Life"
Coach, Athlete and Mom to Liam
Survivor of
Cystic Fibrosis, Double lung transplant 94, Kidney transplant, 03
WholeBodyWellbeing.com
ASK DOTTIE... |
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Linda M
Member
Username: Petrifiedorgan
Post Number: 61
Registered: 06-2006
| | Posted on Thursday, August 26, 2010 - 04:46 pm: |
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Hello everyone. Thanks so much Rise' for setting up a blog for me. I will try and keep up and keep you posted. The information about the nightshade foods (tomato,, potato, etc) was given to me by my Rheumatologist, who's brother also suffers from HepC and arthritis-like pain. It is common for rheumatoid factors to go up with HepC as it affects the autoimmune system. Im also trying to get my intake of Soy products down due to the genentic problems with soy these days (Montisanto, sp) and have switched to Rice and Almond products instead. I have increased my VitaD intake already, but will look into a better source. Along with the Calcium, Magnesium, and Milk Thistle, my liver at least has stopped hurting. If I can just get my liver enzymes down and decrease the inflammation, then maybe I can slow down the progression. The study you sent me was great.
Karen R, so nice to hear from you. I think about all of you alot.
Kelli, happy to hear that the ascites is slowing down at last. I have been fortunate to have not had to endure tapping, let alone the many you have had. I'm well aware of the type of cyst you had as I have dealt with some form or another in the ER when I was working. Soooo painful. I hope school is going well. What was it you were studying? Sorry, bad memory.
Dottie, I will give your idea a try. My biggest problem is the cramping in my legs and feet. Hopefully, if I can get my nutritional self in a more normal state, that will stop. I do try gentle stretching to keep from muscle wasting, but its difficult. I have always been active, dancing, running, and just doing. This may be the hardest part for me, realizing my limitations and counting on others to fill in the gaps of my life. I am blessed to have my hubby and friends, both at home and here to help me through it. I just know that there must be ways to combat this stuff in a natural way that does not benefit the pharmaceutical companies.
Well I will keep in touch. Please all take care. Love to all. Linda M
Linda M, RN
www.cafepress.com/liverart
http://www.uselessmusic.net
Waiting For Transplant
ITS NOT WHAT YOUVE GOT, ITS WHAT YOU DO WITH IT.
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Hostess Rise
Board Administrator
Username: Rise
Post Number: 14254
Registered: 05-2003
| | Posted on Thursday, August 26, 2010 - 05:04 pm: |
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Linda
This is the Vitamin D that Karen told me about that has completely brought my levels to good range 25-OH. I am now at 51 and would like to bring it up to in the sixties. I am imaging that having CF my levels were very low as they were when all my other vitamins levels were normal.
http://www.totaldiscountvitamins.com/product/1950/biotics_research
I was taking this product many years many years ago and had no idea what my levels were. The dosage I was taking many years ago was far and away not nearly enough.
From this experience, I am now a believer in this product line.
I am also taking their omega liquid. It is made from sardine oil.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Jackson Memorial Hospital
Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program-Miam Transplant Institute
Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine
Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact Hostess Rise' |
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 4750
Registered: 07-2007
| | Posted on Thursday, August 26, 2010 - 09:53 pm: |
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Linda:
I was just thinking about your inflammation problem. Have you tried fish or krill oil. I know that there are a lot of studies out there about how fish oil and krill oil help people with Rheumatoid arthritis. I can't remember it word for word, but the fish/krill oil helps with the pain and inflammation.
Just a thought. I take fish oil and krill oil. I also have been taking egg white protein and have seen an increase in my energy and less muscle fatigue. I too am trying to limit my soy intake.
Just some thoughts for you. It is so good to see you posting. I think of you often as well. I will keep you in my prayers!
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Linda M
Member
Username: Petrifiedorgan
Post Number: 66
Registered: 06-2006
| | Posted on Monday, January 03, 2011 - 04:37 pm: |
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Hi all, not really sure where to post these days, so I'll use the blog Rise set up for me. Thank you all for the well wishes and response to my post for Christmas. Good to hear from some old friends on TB. The weather here has been very cold, but mild with no more snow for awhile. Some due this weekend. I love snow!!!!, but can barely tolerate the cold anymore. Seems I'm always under an electric warming device of some kind. Hubby got me some new enzymes for digestion and that seems to be helping with the nausea I have had lately. My state of mind seems to be a bit better as well. Got a new Kindle for Christmas and just love it. Doing alot more reading. I go to my TP clinic on the 11th to see what they are going to do with me as I sit here in limbo. I'm trying to gather up the courage for that dreaded Cardiac Stress test again. I hate them so much and my fear and anxiety makes it even worse. I know it needs to be done though, so?????? I just finished putting down some vocals for a new album my hubby is doing for a friend. I really sounded like a croaking frog, its been awhile. Well hugs and kisses to you all. Hang in there folks for the new year. It should be very, very interesting.
Linda M
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Hostess Rise'
Board Administrator
Username: Rise
Post Number: 15347
Registered: 05-2003
| | Posted on Monday, January 03, 2011 - 06:13 pm: |
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Hi Linda
Thank you for the update. Sounds like you are keeping busy in a good way with singing. Are you singing often besides creating the vocals for the new album for your hubby's friend?
I am thinking of buying a kindle soon. Glad to hear you like it.
I am searching for a new enzyme, which is the enzyme you are taking? Curious minds would like to know.
Stay warm! Happy New Year!
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 5114
Registered: 07-2007
| | Posted on Tuesday, January 04, 2011 - 11:46 pm: |
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Linda:
I love hearing from you! I must have missed your Christmas post. I was so busy during the holidays that I was not on Buddies much. I just didn't have enough time during the day to get things done. It was fun though. So....Happy New Year to you!!
I don't like the cold much either. I am always standing by my portable heater or under a heating pad or blanket too. Ever since transplant I can't seem to get warm. I am ready for spring that is for sure. In fact, as I sit here typing my fingers are freezing!!
I hope that your appointments go well. I know what you mean about that cardiac stress test. I didn't like it either. I guess we just have to grin and bear it - YUCK!!
Have a wonderful new year!! Try and stay warm. I drink a lot of tea to keep my insides warm!!
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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