It's not all about the MELD Score

Posted by amyintucson @amyintucson, May 19, 2018

There are lots of threads out there with questions and comments about MELD Scores. I just had my 1year/3 month pre-liver transplant review and my MELD is a 10. The doctors at Mayo/Phoenix emphasized that the MELD isn't everything as some people are sicker than their scores indicate. They have me on the "active" list and am in the discussion at their weekly team meetings. I have venous congestion that is of major concern because if it continues to grow it causes other operative problems. I have had esophageal varices banded – 6-8 times (no bleeding so far) – but that has precluded using a blood thinner to allow the body to dissolve the clot on its own. If my next upper endoscopy – in the next 2 weeks here in Tucson – shows no new varices we may try the blood thinner even with my low platelet counts. Though it increases the risk of bleeding, with weekly monitoring its a risk/reward decision. The bloid thinner will likely raise my INR and temporarily raise my MELD, it's worth a shot if the body breaks up the clot.

@johnshaw

I have a good team, and they advise me to be prepared for anything. In Jan 2019 I was so sick that my family gathered for my final days. I was in a coma for 4 days had severe HE with weekly fluids removed from my abdomen. I had decided to get clean from alcohol and change my life style. By March I was ambulatory walking daily and eating a healthier diet. My labs continued to improve and my Meld score dropped. My doctor reminds me that I may still get sick and need a transplant, just not right now. I do a lot of Vol work with AA and the hospital as I am a LCPC and 30+ years working in a hospital. Although the damage to my liver was caused by alcohol abuse, I do what I can now, to stay healthy and help others.

Jump to this post

Someone told me once, "life isn't about how hard you fall but how well you pick yourself back up". I'm glad you're on the road to recovery from alcohol. I'm sorry that your clarity came after so much harm had happened to your body. It is wonderful that you are making changes and starting to live again in a different and better way. May God bless you on your journey.

REPLY

Bravo! @johnshaw, @amyintucson, @luckonetj, @gaylea1,
You have demonstrated that we are so much more than our disease or our MELD Scores! I admire you for your strength to overcome the obstacles that have been placed in front of you. You are an inspiration to all of us.

REPLY

I'm approaching my 6 month transplant anniversary (6/28) and am physically doing well. My post surgery kidney issues are still problematic and having some side effects from the meds – losing hair, some tremors and insomnia. All of those are pretty minor in the scope of things. I will be stopping the Valcyte and Bactrim on Friday and we'll see how my body responds.

REPLY
@amyintucson

I'm approaching my 6 month transplant anniversary (6/28) and am physically doing well. My post surgery kidney issues are still problematic and having some side effects from the meds – losing hair, some tremors and insomnia. All of those are pretty minor in the scope of things. I will be stopping the Valcyte and Bactrim on Friday and we'll see how my body responds.

Jump to this post

@amyintucson
Yay you, six months is a great milestone. I'm sorry to hear you are experiencing side effect, it happens to the best of us. I lost a lot of hair after my transplant (thankfully I started out with a lot) my docs said some of it was just my body experiencing trauma from being sick and the shock to my system from the surgery. I eventually was put on Vitron C which is a heavy dose of Iron with Vitamin C for added absorption to get my hemoglobin (iron levels) back in the "normal" range. Not sure what the trick was but eventually things settled down. Don't hesitate to ask your Docs and Nurses for help. I also found out during this time that hair loss is best addressed by dermatologists and the sooner the better. Hope this helps, Happy 6 month Kidney-versary.

REPLY
@jolinda

@amyintucson
Yay you, six months is a great milestone. I'm sorry to hear you are experiencing side effect, it happens to the best of us. I lost a lot of hair after my transplant (thankfully I started out with a lot) my docs said some of it was just my body experiencing trauma from being sick and the shock to my system from the surgery. I eventually was put on Vitron C which is a heavy dose of Iron with Vitamin C for added absorption to get my hemoglobin (iron levels) back in the "normal" range. Not sure what the trick was but eventually things settled down. Don't hesitate to ask your Docs and Nurses for help. I also found out during this time that hair loss is best addressed by dermatologists and the sooner the better. Hope this helps, Happy 6 month Kidney-versary.

Jump to this post

I thought I was the only one who suffered from hair loss and thinning. My transplant was 7 months ago. So you recommed I ask my doctor about this? It is starting to get noticeable.

REPLY
@amyintucson

I'm approaching my 6 month transplant anniversary (6/28) and am physically doing well. My post surgery kidney issues are still problematic and having some side effects from the meds – losing hair, some tremors and insomnia. All of those are pretty minor in the scope of things. I will be stopping the Valcyte and Bactrim on Friday and we'll see how my body responds.

Jump to this post

@amyintucson my 7 mo post transplant is June 28. My post operative symptoms are thinning hair, fatigue, and tremors. The tremors are believed to be caused by the tacrolimus (prograf). I only take 2mg daily of the tacrolimus. My appetite isn't back to normal either. I'd still take this over my pre surgery symptoms.

REPLY
@gaylea1

I thought I was the only one who suffered from hair loss and thinning. My transplant was 7 months ago. So you recommed I ask my doctor about this? It is starting to get noticeable.

Jump to this post

I’m almost 15 mos post transplant and I also suffered from hair loss. I’d always had thick hair and wasn’t sure if it was going to be permanent or if there’s was something I could do. Someone on Mayo Clinic Connect suggested Biotin. I talked to Mayo specialty pharmacy and they gave me the ok. Now my hair is thick again and I’ve stopped taking it.

REPLY
@amyintucson

I'm approaching my 6 month transplant anniversary (6/28) and am physically doing well. My post surgery kidney issues are still problematic and having some side effects from the meds – losing hair, some tremors and insomnia. All of those are pretty minor in the scope of things. I will be stopping the Valcyte and Bactrim on Friday and we'll see how my body responds.

Jump to this post

@amyintucson My transplant team at Mass General Hospital also recommended biotin, as @cmael mentioned. The only side-effect is that it can cause inaccurate results on a TSH test. My endocrinologist told me it doesn’t effect the thyroid, just the test, so if that is a test you need to have you should stop taking it a few days before the test.
JK

REPLY

@jolinda I wasn't clear – I had a liver transplant (still have my original kidneys) and on post transplant day 5 my kidney function plummeted causing concern, a kidney consult and a week more in the hospital. My eGFR went down to the low 20's and they indicated that if it went lower I would need dialysis until they improved. Avoided that, but even now my eGFR is only in the mid-40's ar best.

Under the misery loves company umbrella, I feel a bit better hearing that so many others have experienced hair loss. It only started a few weeks ago – seeing strands of hair on my pillow after sleeping was scary.

Another symptom I've had has been hot flashes. I am 58 and post-menopausal having never had hot flashes before. Seems odd but I'll live, although as an Arizonan in summer I don't need to feel any hotter!

REPLY
@amyintucson

@jolinda I wasn't clear – I had a liver transplant (still have my original kidneys) and on post transplant day 5 my kidney function plummeted causing concern, a kidney consult and a week more in the hospital. My eGFR went down to the low 20's and they indicated that if it went lower I would need dialysis until they improved. Avoided that, but even now my eGFR is only in the mid-40's ar best.

Under the misery loves company umbrella, I feel a bit better hearing that so many others have experienced hair loss. It only started a few weeks ago – seeing strands of hair on my pillow after sleeping was scary.

Another symptom I've had has been hot flashes. I am 58 and post-menopausal having never had hot flashes before. Seems odd but I'll live, although as an Arizonan in summer I don't need to feel any hotter!

Jump to this post

Although we had different transplants the drugs and surgery trauma seem to match up. Hair loss is minor compared to organ failure but still matters. We went through all of this to live our best lives and my best life includes hair 😉. Sorry to hear your kidneys are getting beat up too, not good. All my best, J.

REPLY

Sounds like transplant and hair loss would make a good new topic to start. Any takers?

Congratulations @johnshaw. Might I call upon you to support members in the Addiction & Recovery group if someone is in need of your inspiration and support? https://connect.mayoclinic.org/group/addiction-recovery/

REPLY
@colleenyoung

Sounds like transplant and hair loss would make a good new topic to start. Any takers?

Congratulations @johnshaw. Might I call upon you to support members in the Addiction & Recovery group if someone is in need of your inspiration and support? https://connect.mayoclinic.org/group/addiction-recovery/

Jump to this post

I would like to get more suggestions for hairloss and hear other's experiences.

REPLY
@amyintucson

@jolinda I wasn't clear – I had a liver transplant (still have my original kidneys) and on post transplant day 5 my kidney function plummeted causing concern, a kidney consult and a week more in the hospital. My eGFR went down to the low 20's and they indicated that if it went lower I would need dialysis until they improved. Avoided that, but even now my eGFR is only in the mid-40's ar best.

Under the misery loves company umbrella, I feel a bit better hearing that so many others have experienced hair loss. It only started a few weeks ago – seeing strands of hair on my pillow after sleeping was scary.

Another symptom I've had has been hot flashes. I am 58 and post-menopausal having never had hot flashes before. Seems odd but I'll live, although as an Arizonan in summer I don't need to feel any hotter!

Jump to this post

@amyintucson I had terrible hot flashes, primarily at night. I would wake up and throw the covers off. They gradually subsided, but I still get them a bit, never more than one a night, some nights none.

I hated the hair loss too, but biotin did help. For some reason I’m losing some again. There’s always a lot on the shower floor after I shower so I just bought some biotin again and plan to resume taking it.
JK

REPLY
@contentandwell

@amyintucson I had terrible hot flashes, primarily at night. I would wake up and throw the covers off. They gradually subsided, but I still get them a bit, never more than one a night, some nights none.

I hated the hair loss too, but biotin did help. For some reason I’m losing some again. There’s always a lot on the shower floor after I shower so I just bought some biotin again and plan to resume taking it.
JK

Jump to this post

@contentandwell is Biotin a sort of shampoo or rinse? How is it used?

REPLY
@gaylea1

@contentandwell is Biotin a sort of shampoo or rinse? How is it used?

Jump to this post

Biotin is a supplement that you take by mouth. I was told to take 2.5 mg daily, but you should check with your nurse team or pharmacy.

REPLY
Please login or register to post a reply.