I had my two appointments today. The first one with my Liver specialist and the second one with a spinal surgeon.
At the first appointment I was told that all my blood results were really good and so was my CT scan.
At the moment the only medication I take for my liver is 2mg of Adoport (tacrolimus) daily. As things are going so well I am to have my Adoport reduced again (all being well) at the next clinic in 3 months time.
To come from being a man virtually on his last legs 18 months ago to this will never cease to amaze me. I will never be able to thank my donor and donor family enough!
My second appointment with the spinal surgeon.
He told me at my last appointment when he arranged for me to have an MRI scan, that his first call would be to look for cancer as I had cancer of the liver pre transplant. He told me that there was no cancer present...…..PHEW!!!!……….also what the scan had shown was that my spinal breaks had healed.
Now the bad part...….There is nothing that he can do for me surgically as the MRI had shown that I have what he termed to be serious osteoporosis and my bones could break quite easily particularly if I were to Fall .
My next move now is to ask if I could be referred to a pain management clinic and through that hopefully be able to be more mobile.
so I'm very, very grateful for all the plusses and now I know exactly what I'm dealing with I will get on with things and enjoy life as much as I can.
My back is the fly in the ointment, but hey!! I'm still here to moan about it and that's just brilliant!
All the very best to you all and thank you all for your support along the way.
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alfredthegreat
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Hi Alf. That’s great news about your liver, not so great about your back. I hope they can do something about the pain it’s giving you. There’s only one thing worse than back pain and that’s toothache so I do feel for you. I know you’re very good at focussing on the positives and your livers doing great. Take care
Thanks Lynne. I'm sure it will help. I've been reluctant to take anything unless I'm desperate, now I must concede and get on with things!
Hi Alf
Thank you so much for updating us all so quickly on your wonderful progress over the last 18 months.
Sorry to hear about your serious osteoporosis and shall be 🙏🙏every night that you're offered pain management that works to relieve your constant discomfort.
Hi honey. Love your glass half full mindset 💐. Such a shame about the "blot" on an otherwise great landscape. I'm sure you'll be well looked after by your docs who can help with your pain. Pam Ayres husband can "cure" the NHS...read her poem called "They should have asked my husband". Sounds very much like my dad!! Love and best to you both and continued recovery from lurgy. Steph 🤗
Yes, will be great if they can help. I'm still going to race you next year, or the next one, LOL' You'll have to have a handicap though because you'll be a bionic man!
Oh my friend as you say good and bad. The good was overwhelming for me, so pleased I am. The bad news not so nice, however, as you said you now know what you are dealing with. I am so sorry all the same. No more falling in the shower/bath Anne may have to hold your hand in there. Could be a small bonus? (She smiles) I know how supportive you are to everyone on here. Never failing to reply and give encouragement. So I am sure there will be lots of support for you at this time. I for one send virtual hugs to you and loving support. Keep smiling. Thinking of you both. Jaycee
I know that you have been through so much yourself too and with great determination and good grace.
I'm going to stay firmly on my feet I promise, Anne has threatened me with stabilisers but they could be a bit cumbersome in the bath, so I'm going to be very careful and follow the house rules. No heavy lifting, no carrying things on the stairs and the list goes on...………...LOL
It's onward and upwards and never falling downwards
Hope that you had a fantastic holiday and have recharged your batteries and also hope that you returned to find that lots had been done on your new house while you were absent.
All the same I enjoyed myself. When I arrived my 5 yr old grandson was really poorly. So he was off school for the whole two weeks !
So busy I was!
I forget just how demanding little ones are !
There were so many high points during the two weeks. Laughing and playing all day. I am well up on many children’s films. Paw patrol and Peppa 🐷 pig.
That was the good, now the not so good.
I caught whatever Reggie had. I was so ill 🤧. Cough, cold, headache, temperature. Cumulating in Bronchitis. Still suffering now sadly.
On the plus side getting better.
Poor Tony, could do nothing in the house because the day I left, the bathroom sprang a leak. All work stopped, as the concrete floor has to come up. As pipes are under the floor !
Lol.
So batteries dear friend are currently a tad flat. Fast charging as I type.
So please listen to your lovely wife or we will sort out those stabilisers! We could always get one of fat suits that folk wear. You would not look good but maybe safe. (Mr Blobby) comes to mind.
I think I will set Tony to work on a falling motion sensor, attached to your blobby suit which inflates as you fall. Keeping you safe. I liked the idea of earning money beyond my needs! LOL . Seriously thank you for your kind words when you are suffering as well. xxx Jaycee
Sorry to hear about your back . My husband battles on with osteoperosis and it does have a big inpact on his day to day living. He is waiting to be on the list to see someone about his back and the only thing that have helped so far is his tens machine and 6 months of physio. He like you is glad to be alive and has the best times he can. Brave wee soldiers xxx
The professor we saw said we could waste our money on accupuncture if we liked but didnt think it would help at all.Keith has been swimming nearly every day at the local pool which seems to help a bit. Its been too cold for walking very far x
I was thinking of it a few months back but was scared I might possibly do more harm than good with not knowing exactly what was going on in my back. Now I know what the score is then I think it could help strengthen the muscles that support the spine without putting me at any great risk
I can reccomend hydrotherapy. A few of us take the plunge with the physio. She tells us each in turn what to do for our individual needs. Some are post orthopaedic surgery some like me osteoporosis some don’t declare 🙊🗣. Day after first session ok felt no pain anywhere. It was a weird feeling after so many pains in different places! Each time it has helped me to walk more between therapies. I’m hoping this will strengthen muscles so I can walk more and more to build some bone. A bit of Tai Chi is helping me balance better. All on hold for a couple of weeks while I had other little procedures carried out. So, let’s see pics of you and Anne in your martial arts jimjams...☺️when you’re over the lurgis x
Hi Vicki.I like the sound of the hydrotherapy but I think the Tai Chi could be a bit risky, my balance is a bit iffy on 2 legs (a legacy of the illness pre transplant)
I could send a pic of us in our jimjams in front of the wood burner having a cup of hot milk and dunking a Rich Tea biscuit. Or does that sound a bit racy, LOL.
Ha! I lack the imagination to see that as racy in any way I look at it! So you’re fine!! The best thing with Tai Chi for me is to learn to move again, to transfer weight fully and safely from one foot to the other instead of hoping that my brain will automatically direct me as it used to. Not for everyone though. 👣 👀Especially not for 🧜♀️ mermaids 🧜♀️ who don’t have feet. (A bit off topic but just saw that emoji and used it) Roll on the warmer weather and it will be less painful to go out and walk. Until then, wood fired jimjams and dunkers- bliss xx
I’m 14 months post transplant and have had all sorts of treatment for a bad back. Ive had facet joint injections, denervation and months of physio. Finally I made real progress after just 2 hydrotherapy sessions and daily physio at home (simple exercises twice a day). It’s really amazing how effective it is.
Pleased to hear it! As I understand it, in the past decade a lot has been discovered about fascia and the high number of pain receptors it contains and how it needs to be stretched to remain healthy and comfortable. Even physio-led chair exercises bring a lot of relief from pain. Since fascia wraps every muscle bone and organ it seems to make sense that safe movement makes us feel and be much stronger. 🤗
Can I ask have you ever considered any acupuncture? I'm asking because my GP at the time knew I was suffering with awful neck and back pain after being in a nasty car accident following a month in hospital.
Anyway from totally out of the blue my GP gave me numerous acupuncture injections which I do remember working almost working immediately to remove the pain, unfortunately it was so long ago 1998 that I cannot remember how long the relief lasted! Also unofficially my GP recommend I register with a well known chiropractor who at the time occasionally appeared on the TV!'He's called Thomas Gwilliam who to this day is still my chiropractor and has recommended certain exercises to keep the pains from returning.
I know your suffering badly and wondered whether acupuncture might give you some pain relief you need if only for a shortly period of time so that you can enjoy life a little!
are you sure that it's acupuncture that your doc gave you and not steroid injections?
I've heard that a lot of people have had relief with steroid injections and that's something that I'm hoping might be suggested at pain management clinic.
I asked GrannyDoll if her husband had acupuncture because I know at one point they were looking into it. Her husband's specialist thought that acupuncture could be a waste of time and money.
Anne had acupuncture for a painful elbow and it did nothing.
She was diagnosed after the acupuncture with non atypical tennis elbow. The doctor gave her a steroid injection and it was instant relief but she was told to rest the joint for a good while. She had no trouble with it after that but a couple of years later she had to have a steroid injection in the other elbow and the injections worked once again.
Some people swear by acupuncture but others have said it did nothing for them.
Yes acupuncture tiny needles pieced my skin in numerous areas! I must say the GP was fairly new to the practice and did take me by surprise when he asked for my permission to carry out the procedure.
Re Steroid injections ... At the age of 38 I suffered with tennis elbow in my right arm caused by 3 years of martial arts and would you believe it gardening!👎 At one point a new elbow was being considered but eventually the 5th steroid injection
along with giving up gardening and the self defense worked and my elbow recovered 👍😊
I would certainly recommend the acupuncture if only for a time fix !
Thanks for clearing up that point. When you said acupuncture injections, I had never heard it termed as injections before and just wondered if you had meant steroid injections.
Fingers crossed for you Alf on steroid injections . Remember they did work for me but could only have a certain amount of tops ups which was almost 30 years ago plus the medical profession have progressed since then ...
You’re doing great. I would eat lots of cheese,milk,yoghurt and grab a few raw beets. Rinse them off, cover with tinfoil. Throw them in the oven for an hour or so. Also keep salt down and way to go.
I’m still alive too, no transplant,they gave me 30 days beginning of 2017. I’m still ticking. Stay strong. Linda Boldad
I do eat lot's of calcium rich foods and oily fish etc. and I love cheese and beetroot sandwiches. My sister is always pickling me jars of beetroot too.
Keep the fish! Remember the man who’s donkey got too tired to walk and variously he suffered on his walk home as he took kindly-given advice like “carry the donkey” “smack the donkey” “abandon the donkey” and as he tried each of these he was heckled by peeps who thought he should do it a different way. 😂 I think that’s where Frank Sinatra got the idea for one of his bigger hits. I hope this is on topic. I have been reading what people say and I think it’s on topic if obliquely. What do you think Alf?😉
Great news on the liver! 🙆♀️, I too have osteoarthritis, bone degeneration disease of the lumbar spine, brittle bones , do you take anything for it alf ? ..I'm on adcal tablets , two per day, I found pain management not to be much help if I'm honest with you , I find gentle stretching helps with easing of the back pain to stop freezing up so to speak. You may find pain management good as we all have different experiences, I'm off to my GP in the morning to ask for meds re view and to check on a mole that's raised and dark in colour, I have past history of malignant melanoma.
I take a Calceous tablet twice a day and an Alendronic acid tablet once a week and eat all that is good for my bones, but have been told to eat cheese in moderation unless it's cottage cheese.
Maybe I will get shown some exercises to help, I hope so.
Hope your appointment goes well tomorrow and that the mole is an ok one.
That's great news about your TP, and long may your improvement continue.
I'm so sorry to hear about your osteoporosis diagnosis, you'll have to be so careful in future. Is there any meds that can reduce it's impact?....I hope so.
It's good that you are trying to get referred to a pain clinic.....constant pain can really bring you down, as I know only too well. I hope it happens quickly for you, so you can get some relief.
I do take a prescribed calcium + vit D tablet twice a day and Alendronic acid tablet once a week and have done since they diagnosed osteopenia a year ago. Then I had X rays on a knee and both hips and they diagnosed osteoarthritis in those. So I'm doing my best to hold my frame together.
My wife Annie has osteoporosis, and like you takes alendronic acid tablets, and also Calfovit D3, which is a powder that is mixed with water.
I have osteoarthritis in my knees and hips as well, and it gives me gip every day........too much sport in my youth must have worn then out prematurely 😊
The same here with knees and hips and I think the weight lifting I did in my younger life didn't help!
Do your remember Geoff Capes, at one time the worlds strongest man.? He visits a vintage/antique shop belonging to some friends of ours, he can barely walk now, struggles badly to do just a few steps and then has to sit.
Yes, Alf, I remember him well. He used to compete in the Highland Games, as well as the shot put. He was one of my sporting heroes back then, so it's sad to hear that he's paying the price now.
Hi Alf, so glad to hear the good news about your Liver. 👍.
Don't worry too much about the Osteoporosis in your spine. I've had it for over 20 years .Im on Adcal tablets twice a day and Alendronic Acid to be taken
1 tablet once a week. Just be careful that you don't bang it..Well just be careful.
There's a lot of different types of pain medication that you can take for it.
I'm with the Pain Management Doctors and they have tried a load of pain medication with me..But I've got Chronic Fibromyalgia,Rheumatoid Arthritis
Osteoarthritis Arthritis ,and Osteoporosis .So pain relief is a hit and miss for me. Mostly a miss ,because of the Fibromyalgia .OUCH.
Alf can you answer me something.
I want to be a Donor. But I DON'T want them to take my eyes.👀 My one Son said that he thinks that if i sign the form to be a Donor,it means that they can take everything.. I wanna keep my eyes, 👁👁because when I'm gone ,i wanna see where I'm going. 👀.
Yeah,i wanna see where the rest of me is going. Hahaha. I like that. 👍
I know that most of my organs have got something wrong with them..But even so. They could perhaps still find out something that have caused some of the problems that i have.
Too late for me but it could help prevent other people having the same S.t that I've got. I want to keep my eyes, because I want to see my Mam,Dad and Brothers waiting for me at the Pearly Gates.
I wanna see Elvis singing I MISS YOU.
And Mama liked the Roses.
Kellie Coffey singing To Dance with my Father again and.Then i can literally dance with my Dad again..
So when i go for my Op in a few weeks time. Im gonna sign a Donors Form but state that they leave my eyes just where they are. Just in case.
I am so pleased for you with all your good news and a very positive attitude with the bad, good luck with your pain management team I really hope they give you the freedom of pain we all wish for you, and don’t forget we are always here for you to have a good moan 😃
Wonderful news about your liver, one huge hurdle done.....another to go & every faith you'll jump that hurdle too ( albeit a bit carefully ) some great tips & advice here .....rooting for you 😊👍
Congratulations on all the good news - that’s wonderful progress for you and to be able to cut the Tac back so far is the icing on the cake on the TP side of things.
So sorry however, to hear about the osteoporosis - I assume they can put you on bone growth drugs - there are definitely quite a number of drugs that either encourage growth or reduce the rate of bone loss - hopefully they are looking into this for you.
By coincidence I’ve just had an appointment at pain management and can only speak of our local centre but they were very helpful and patient - a long consultation plus several recommendations post clinic so I’m feeling much more hopefully about my own long term pain issues - I hope you get as good a result.
I take calceous tablets twice a day and an Alendronic acid tablet once a week. I've been taking these for a year now since 'osteopenia' diagnosis. I'm due another Dexa scan to see if these have helped in any way.
With the latest diagnosis from the MRI scan that the spinal surgeon referred to as serious osteoporosis, I'm not sure if this means my bones have deteriorated in the last year or that my diagnosis this time last year was incorrect.
Meanwhile I've been eating all the right things and trying to exercise ( limited because of back pain) and I'm about to start swimming.
Is good to hear about your experience at the pain management clinic I'm hoping mine will be as good.
Hope that you are doing well and getting out and about.
This is great news and if you don’t mind me saying is great to hear you moan so well 😂, the very best of luck with the pain management team I hope they come up with something to make you more comfortable.
Thanks Dogbot. My first physio was supposed to be April 1st but cancelled for obvious reasons. Then got a telephone call from my GP and they have arranged for me to have a physio session tomorrow afternoon over the phone. This should be interesting
Yes I think it’s amazing them doing all these appointments over the phone especially yours to do physio on the phone you have to have perfect balance 😂( the old ones are the best) good luck with it I really hope it helps .
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