4 months post transplant.

Hello to everyone, I am as always awoken each day with a grateful heart.

Truly, I feel so blessed to have been so lucky to have my transplant.

I have faced a few tiny hurdles to leap over since the transplant.

Would you mind if I ask this amazing community a few questions? In the hope that someone may have had similar symptoms and recovered well.

After the initial rejection issues in the first week of transplant. I started to get better and was walking firstly round the block, then slowly up to 3k.

It was slow progress, but I was getting much better.

Then I was hospitalised again, after what was thought a heart attack. After testing to see if it was indeed a heart attack, the tests did show this is what happened and I was admitted.

After a week in hospital, I was sent home. No real idea what caused it aside from anemia.

Within the next week or so, I was hospitalised again with abdominal pain, shortness of breath and a general all round lack of energy. Much testing was done, I was really very poorly at that time, I was told that I had CMV. This was treated with tablets and deemed cured after I was given two all clears. That was in June.

I would add here my heart was tested and there is nothing wrong with it. It seemed the anemia caused lack of blood going to the heart which caused the problem. At this point I was put on iron tablets, twice a day.

None the less, I still have these ongoing issues. Having just returned from another week in hospital again. With the same symptoms.

Symptoms:- Mostly with the anemia. Such as breathing issues. Cold sweats, literally dripping but cold and clammy and no temperature, very pale skin, complete lack of energy, headaches, tremors.

Whilst in hospital this week, I was told it was my red and white blood cells and the platelets, were all down, along with the kidney function not being right. I then had my third blood transfusion in the space of 4 months?

I have been told that the bloods are all back up again now, since the transfusion.

Still yet, the symptoms persist.

I can no longer walk very far, indeed not even round the block, or up and down stairs without stopping, as I cannot breathe. All the above symptoms are still with me.

They are re testing for the re-occurrence of the CMV virus. Still waiting for the results.

So my question is this? If this comes back negative, what is causing this. Has anyone had similar symptoms please.

Jaycee.

[jojokarak]

Hiya hunni 😊 sorry your having so many problems early on but it is sooooooo much better for you to be going through this now than later x

I had rejection and cmv twice within first 9 months and I also suffered with chronic anaemia and I felt like crap for ages.... I ate loads of foods with iron in and it was just over time it got better... Your body has and is going through so much even the anti rejection tablets won't be helpful with how your feeling just yet..

All I can say is take your time and listen to your body and don't give up you will get there and also trust your gut if something doesn't feel right just ask or see a doctor 😷 they will understand at the moment x

[Hidden in reply to jojokarak]

Thank you Jo Jo, appreciate your words. Did you have all the same symptoms?

I was told in hospital that 70% of transplantees they get anemia. That it is par for the course. I eat iron rich foods and have iron tablets..

I will of course take your advice on board. Sega sega, slowly slowly, maybe not try so hard to want to be fit and well. Just rest more.

I am confused as the symptoms do not all just point to anemia. While I was in hospital they mentioned a bone marrow issue.

Nothing was mentioned again, and I was discharged on Monday evening.

You said you had CMV twice is that normal after you have had two clear tests?

It feels like the CMV virus again, but I have no clue. Many thanks for your reply and encouragement as always. Love Jaycee xx

[jojokarak in reply to Hidden]

I did have all the same symptoms it took me nearly a year to walk up the stairs without getting out of breath, I forgot to ask are you still on steroids? And if so how many? That caused my breathlessness more than anything...

You have to have 3 clear tests on cmv and I found the vagicilour tablets themselves gave me problems as well...

They are probably mentioning a bone marrow problem because of the severity of the anaemia x

Definitely take it slowly there is no rush as you have seen it's taken me nearly 3 years now to get a normal blood result lol but it's bloody worth the patience 😁

[Hidden in reply to jojokarak]

Oh you have no idea how reassuring that is for me. You tend to think you are alone, having these very odd symptoms...

I know it was awful for you.

That you had that, and so much more to go through.

Your words have in fact helped me a great deal.

At least I know I am not going mad as well.. LOL.

I am on 2.5 mg a day for steroids they put it down in June. I was hoping to come off it by now. However, because I was ill they put it back up to 5mg in hospital. When my own doctor saw me, on discharge, he knocked it back to 2.5 again.

He also said my liver results were good.

It seems I come home and slowly the bloods all start dropping again. Red, white and platelets. Truly I eat healthy.

I love walking and feel like I am failing if I cannot do my walk. But I have been unable to walk as I said not even up the stairs... and back down without resting due to the breathlessness.

Thank you so much xx

[jojokarak in reply to Hidden]

No worries 😘 glad I have helped x

Your on a lower dose of steroids than me 🤣 so your not doing too bad 4 months post

Just remember the hare and the tortoise fable that's what I did slowly always wins the race 😂🤣😘

[Hidden in reply to jojokarak]

Love it you are so right that is me the hare!!! For sure.

[Laura009 in reply to Hidden]

So sorry you are feeling so rough. Don't get too downhearted, remember it's only temporary.

Lots of love Laura xx

[Hidden in reply to Laura009]

Thank you 🙏 Laura I think I just have to be more patient.

[Hidden in reply to Hidden]

SEGA SEGA Jaycee.... but let’s hope not too SEGA

[Hidden in reply to Hidden]

I know my friend truly this is making me eat my own words LOL. Seriously though it is a little strange 3 blood transfusions in 4 months!!

[Hidden in reply to Hidden]

More than a little strange Jaycee. I wasn’t saying be more patient or anything like that maybe I should have said 🤞🤞it doesn’t happen again ☹️...

[Hidden in reply to Hidden]

I know, I feel sure it is the CMV come back but still waiting for the results. All the same if they come back negative for CMV then why am I not producing enough red and white bloods and platelets.. is that along with the breathlessness all down to the anaemia? If that is so then Jo Jo is right I must be be more patient sega sega. Xx Jo Jo was like this for 3 years. Please do not get me wrong I am totally happy cup overflowing in fact. Just this little issue. Eat my words sega sega. Xxx

[AndyEssex]

Hello,

I am almost 2 years post transplant. My initial stay in hospital was 3 months, 58 days of that being in intensive care. I also had the CMV virus upon transplant and was treated with a medication called Valgancyclovir. My last 2 weeks in hospital were spent in isolation due to the virus.

I stayed on the medication for a few more months before my blood tests showed I was clear.

Can I ask what immune suppressants you are taking and what daily dose? I don't think I've ever really come to terms with their side effects.

Andy.

[Hidden in reply to AndyEssex]

Hi Andy,

I am sorry to hear your stay was so lengthy! Wow that is a long time.

Originally I was only in fo 9 days.

I am on Adoport. (Tacrolimus) I am on 4mg per day. 2 am and 2 evening.

I also took Valganciclovir and had two all clears and stopped.

They are testing now to see if it’s come back. I was not aware it could come back.

The Adoport are ok for me I just get headaches around twice a day and tremors as side effects.

Jaycee

[Hidden in reply to Hidden]

Hi

I'm not near transplant stage but I know I will need one in the end. You and everyone else are an inspiration to us all. I really hope you start to feel a little better soon. Please don't think you are failing, I look up to and everyone else, I think you are all amazing. Lots of love and hugs Lynne xxxx

[Hidden in reply to Hidden]

Thank you dear Lynne, I am hoping that you will continue in good health.

I also looked up to everyone on this site. Still do.

All the folks who helped me through. So many there were.

I truly never thought I would be so lucky.

Since transplant, I think I should be as well as I was before transplant. To be as fit as I was.

I truly did not think for one moment, that I would feel as I do. Being unable to breathe, after a short walk into the kitchen, or down the garden path, is completely foreign to me. Not having the energy to be even think about walking across the room let alone my usual walk.

It feels like the CMV virus, has come back. I only had two all clears from last time. However, no one has come back to me since the test was redone.

If that comes back negative, then I guess it is just the anemia. I just may have to live with this.. or except it will take a lot longer.

I I think maybe as Jo Jo said the hare and the tortoise fable should be heeded for me.

Thank you so much for your kind words. Support on this site is constant and abundant... I love each and everyone here. Jaycee

[Hidden in reply to Hidden]

Thank you

I get about an hour or less cos of pain. I had a blood test the other week, went to see my Dr the following week and my liver numbers had shot up. My dr's secretary got in touch with consultant's secretary to see what we do now, we are still waiting for them to call us back. I'm now having another blood test this morning and I see my Dr next Friday for results. Please take care. Lots of love and hugs Lynne xxxx

[Hidden in reply to Hidden]

I hope the blood tests get sorted.. I am so sad to hear you are in such pain. All we have is trust my friend. Trust that they know what they are doing.. They are the professionals and we their grateful patients...

All the same it can be so hard the waiting, the pain, the uncertainty.

Stay strong xx

[Hidden in reply to Hidden]

Hi

Thank you so much for your kind words. Y es, the waiting is hard going. I'm just worried that my numbers will have gone up again.

How are you feeling this morning?

With all my love Lynne xxxx

[Hidden in reply to Hidden]

Just great, constantly tired, no energy and last night no sleep LOL but my heart is full, and I have an amazing family, along with my liver family. I am totally a cup half full girl all my life... So whilst you are waiting Lynne keep your cup half full my darling. I am thinking of you and sending huge positive vibes that they will get to the bottom of your pain.. Jaycee

[Hidden in reply to Hidden]

Thank you, you are so kind. I am a glass half full person the majority of the time. I have been to pain management and it was neither use nor ornament!!. I am going to an orthopedic pain management team on the 27th August and a gastro pain management team on 23rd September!! Lots of love Lynne xxxx

[Hidden]

Jaycee19 - yes! But I haven't had a transplant. I have PBC and a few other autoimmune conditions. I took myself to hospital, thought I'd had a heart attack, but no, it wasn't. I have had similar, immediately prior to colonoscopy (so after bowel cleanse with citra fleet). A couple of suggestions were made (I too have low platelets). 1) low blood pressure after standing too long, eating and drinking too little. 2) a virus that had no visible symptoms was challenging my system, or possibly both 1 and 2 together. I have extreme fatigue with pbc, so the standing and not eating wouldn't have affected another person as it did me. I thought I was going to die. It took three weeks at least to get over. I hope you are heading for a clear run of good health shortly. It is such a rollercoaster. x

[Hidden in reply to Hidden]

Thank you for your message 4thplinth,

I am so grateful for your input. It is indeed a roller coaster.

Mine was actually a heart attack, and was proved by blood test, but with nothing wrong with the heart. It was believed it was the CMV virus or the anaemia that caused it. I am tired constantly.. unable to breathe properly. Everyone has been so helpful.

Your journey sounds exceptionally hard my friend, may I please send you huge hugs and hope you are also feeling better soon.

Many thanks Jaycee.

[Hidden in reply to Hidden]

Jaycee19 - thank you for your lovely response. This much I know, the harder the road, the more we can appreciate the truly important things. Our bodies are still full of secrets no matter how much we know about them. I've had a hysterectomy and a bowel resection after cancer and I wonder is this, even tho I'd been stitched back together, did all the millions, billions of cells in my body know that straight away, or did it take a while for them to say "ok chaps, there's enough of us to carry on as normal" And while they are pulling themselves back into shape, won't it take all of our strength? So that we don't even have the energy to frown or smile? I'm used to it being up and down now because it's how autoimmune conditions go, and I hope you will soon be looking back and thinking 'wow! how much I have improved'. Btw, weeks after surgery, when I felt weak, surgeon said 'remember, if this injury/cut happened to you by accident, and not from careful planning and execution, you would have died. That is what your body is recovering from. It will get better.'

[Hidden in reply to Hidden]

Thank you 😊 so much.

[1155Cat]

I am so sorry for what you are going thru ... keeping you in my prayers for someone in the medical field to find out what is going on with you and set you on the path of recovery !!

[Hidden in reply to 1155Cat]

Wow thank you so much 😊 really appreciate that xx Jaycee