Liver transplant - Let's support each other

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.

@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.

@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 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.

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?

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.

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

@acid2come I hope the traffic wasn’t too horrendous today. We went to MGH last week for a 3:00 appointment. We left here at 12:45 and I barely made the appointment. My husband dropped me off on Cambridge Street and I walked the remaining short distance. He had to drive a bit further and park and got there a half hour later! The next day I had an appointment with my orthopedic surgeon in Chestnut Hill and faced the same thing and got there just in time. We can often make it to MGH in an hour so that was probably the worst ever. I do love MGH, they have been great there. I feel so fortunate to have such an incredible facility so close by. I’m sure lahey is good too. If not for that doctor I might have had my transplant there.

I’ve never heard of Valcyte but I’m still on a small dose of prednisone and it’s been more than three years. I think I will be starting a BP medicine soon. I needed a cholesterol one too and the doctor thought that was more important and didn’t want me starting two new meds at the same time.
JK

JK, I know, Boston traffic is crazy, but the minute we hit the old 128 leg of 95 it is at a dead stop at certain times. It all backs up at the I-93 junction and the Lowell Connector. At peak traffic it can take close to an hour to move ten miles. Today my first appointment is at 10:00, so we are allowing three hours for an hour and forty minute drive. I hope we get out early enough--after 3:30, we get the traffic the other way.

I met a woman at a Christmas party the other night who had a heart transplant at Mass General. She always take the train in from Dover NH, Pretty smart. She loves Mass General.

I feel at home in Lahey after these past five or so years. I think the world of my surgeons and the transplant nurses. I will be seeing the Nephrologist today as well as the surgeon. I have been making an effort to drink water and limit potassium and salt, so I'll see what the blood work shows. I have my list of questions and intend to ask the kidney doctor about a referral to a nutritionist. There is some question whether this is covered by Medicare, but I think it is. Blood pressure is my biggest question for the kidney doctor. In spite of two BP meds each day, exercise and diet, it remains really high. I never had this issue pre-transplant. I'm almost at four months--at six months some of the meds get dropped. I am especially eager to get rid of Valcyte and prednisone, Both of these cause dizziness, Valcyte can also affect BP I believe. I live and learn and continue to endeavor to live my best life. Best wishes.

@mostlybill That's too bad that changing the immunosuppressants that you are taking didn't help as it did for me. Are you drinking a lot of water as I was advised to do? Those two things did it for me, thankfully.
I also did not have a blood pressure problem before transplant although I had a slightly elevated BP back around 2001. I have since read that it is not uncommon to have a BP problem after transplant, presumably from the immunosuppressants. Now that my kidneys are under control the worst problem is that the prednisone apparently caused a lot of bone thinning problems when I was on a high dose of it. Now I am on a very small dose.
Regarding the appointments, I always schedule mine in the late morning or early afternoon so I can get in and out of Boston in between the rush hours. At least you don't have Boston traffic to deal with going to Lahey. I may have mentioned, I did go to Lahey first but neither my husband nor I liked the doctor we saw so I chose to do my own research and find a different place. My PCP had suggested Lahey. They do have a nice facility there.
JK