Liver transplant - Let's support each other

Traffic was a breeze until the I-93 junction, but only held us back by about 10 minutes. So I was about a half hour early, which is good. I always have my Lahey survival kit--my backpack stocked with notebook and my list of questions, tablet, charger and lunch. All was well with the kidney doctor. He took my blood pressure manually, rather than one of the automatic machines like I use at home and said my blood pressure was normal. So my home BP machine is most likely inaccurate. Yeah--so no additional BP medicine. My kidneys numbers were good--potassium slightly high, so I had a brief consult with the nutritionist. My surgeon told my my liver is doing great and I don't need to come back for two months. She even told me I looked younger. I love her sense of humor. At four months I think I am finally becoming myself again, feeling a great sense of energy and optimism. There is still work ahead to build physical strength, but that is the easy part compared to the stress of the first weeks and months of recovery. I can't wait for the six month mark when I ill get rid of one or two drugs.

I heard another patient who left Lahey for MGH say they didn't feel like a good fit with a certain doctor. I will say I saw her (if it's who I think) for several years before transplant and attribute my survival to her. She encouraged me to lose weight and always spent the time to answer all of my questions. I think the diet and exercise she encouraged helped me through the surgery and recovery. My cancer was detected and treated in the very early stages, thanks to her care. But I did have doctors over the years of surviving liver disease that were not a good fit, and had to leave behind. Trust in our relationships with our care providers is so important to our outlook. I always hear great feedback about MGH. I have several friends who are transplant patients there.

Valcyte is an anti-viral medication. I need it because my donor liver is CMV (Cytomegalovirus) positive and I am CMV negative. So I face the possibility of infection with this virus at some point. Best wishes, Bill

Hi there.
I'm located in Toronto. Had a liver transplant 4 months ago at Toronto general hospital part of the UHN. Is that where you are being looked after? I have plenty of great feedback.

Hi all,
I am 35 year old female, 4 months post transplant. I am very lucky in that everything is going very well, no complications, little side effects, taken off Prednisone after 3 months and my other meds are in low doses.
Other than hair loss and acne (both of which are improving) my greatest concern is joint pain and stiffness. Bone density is normal. RA negative. Never had this problem before and it's getting worse. After sitting for 15 minutes I feel like a cripple trying to stand up. Getting out of bed in the morning is the worst?
Anyone else have a similar experience?

@jws10 hello, I am in London and received my care and transplant here at University Hospital. They have an amazing program and I'm lucky to be with top professionals. I received my liver November 28th, 2018.

@jws10, I am happy meet you and to welcome you to Connect. Organ transplant is a beautiful event, and I wish you many happy healthy years to come.
I have lived happily for 10 years with my transplanted liver and kidney. I had to take prednisone after my transplant surgery at a high dose, and it was tapered to a lower dose (5 mg) within the first couple months. I do not recall any difficulty with it. However, due to the kidney's needs, I remained on the 5 mg dose for several years, and still no problems. Then I was given the directions to taper off the prednisone and I had to take it slowly. At first a tiny reduction of 5mg to 2.5 mg daily caused me stiff and painful joints, and made me feel yucky for nearly a week. Then my drop from 2.5 mg to 0 mg did the same thing to my body - stiffness, aches and pains. Some stretching and gentle exercises helped, and I was permited to take tylenol. It was my PCP who suggested me to taper to every other day then every third day...And that worked the best for me when I was at 1.25 mg. (Yes! I did cut those tiny pillsinto 1/4)

I would encourage you to contact yout doctor because, all medicines, especially for us transplantees are specific to our individual needs. And they can affect each of us differently. Have you mentioned this to your doctor? What did you find out?

@jws10 im not sure mine is the same reason due the fact im 60 but i do have some joint pain and stiffness after sitting to long or sleeping. Mostly in one shoulder and my hand knuckles but it seems better once i get up and moving. But still don't know if its just old age or due to my transplant meds. Im 2 years post heart transplant next month so ill mention to my team. I do remember more pain back during my first 6 months but mainly from the cheat incision. Not so much joint pain. My biggest problem then was just overall weakness from being in bed too much prior to transplant. But talk to your drs for sure.

Hi all it's been awhile since I've been here.... I go to st.cloud mn . monday for ct scan to see if the three spotz are still there or have grown and blood work.. Depending on the weather. Expecting up to a foot of snow.

@racing212, Thank you for caring enough to share your update on Connect. As a transplant recipient, I am always very much interested to to hear from other transplant patients. Especially those, like you, are in the waiting process, because I remember that my own waiting experience . Rodney, I hope that the weatehr is cooperative so that you will be able to safely travel to St Cloud.
I live in Kentucky and if we got a foot of snow, we would have to shut down! We just don't get that kind of snow and so we don't have the equipment to deal with it.
I want, and I hope for you to get a good report. Is this a one day trip? Or with an overnight? When do you expect to get the results?

It's just a one day event...... Please call me chuck.

racing212, Hi, Chuck. I will be happy to call you Chuck🙂
One question - If the appointment has to be cancelled due to the weather, do you know if you will be able to reschedule it soon?