Badges (2)

About

Member has chosen to not make this information public.

Pages (1)

Posts (39)

Mon, Jun 22 6:54am · Liver transplant support group in Transplants

Hi @xplantsister

You sent me a private message and I was happy to reply. Did you receive it? I just wanted to check that the information I gave to you was useful. I don't know how to send a private message hence this public one! I hope that's okay.

Fri, Jun 5 11:48am · Liver transplant support group in Transplants

Hi @xplantsister

I had my liver transplant five years ago. I had CMV twice; the first was two months after my transplant, and the second was four months later. The first time I was given Valgancyclovir in pill form and it seemed to recede. The second time I was hospitalized and given intravenous Gancyclovir for ten days followed by oral Valgancyclovir for three weeks at home. I am tested regularly but it has never recurred. At the time, my doctors reassured me that they had other medications they could use if the Valgancyclovir failed to work.

I recall being very tired and breathless but I was having difficulty with some of my meds at the time and my doctors were unsure what exactly was causing my symptoms; the meds or the CMV. In retrospect, the first year post transplant is hard for most people and equally hard for our carers but recovering from the CMV and the change in my meds was a turning point for me. Within a few weeks I was better than I had ever been and I now take only Adaport each day. So…take heart. I know it has probably been a long haul for you and your carer but, believe me, you are over the worst now.

Mon, May 4 6:50am · Let's Talk about Gardens in COVID-19

Yes, i know that feeling! My delivery from my local garden centre arrived last week and I spent a glorious, sunny week-end planting my tomatoes, courgettes, ( zuccini to you folks!) and a few bedding plants. The joy of starting the growing season was wonderful especially as I had feared it would never come. Just to bring me down to earth, I changed my medication this morning from Prograf to Adaport. Despite lots of assurances from my Transplant Team and, just as importantly, information from my friends on Mayo Connect, I should not have any concerns but, it is strange to say goodbye to the drug that has kept me alive for the last few years. We've had our difficult moments but, by and large, it's been a good relationship. Enough worry, back to my garden……

Mon, Apr 27 6:52am · Let's Talk about Gardens in COVID-19

After my transplant, we moved to a small house on the edge of a sea loch with a well established garden and, holy of holies, a greenhouse! I've always wanted one and now it is my solace and my refuge. My heart breaks for those in self isolation without a garden. I've just sent off my first order for vegs, herbs and summer plants to my local garden centre who are providing a delivery service for the first time. So many of our small local supliers have gone online for the first time and I thank them all from the bottom of my heart. The word here in Scotland is that the 'shielded' group , which includes all transplant recipients, will be the very last to join the rest of society. It is hard to think of sometimes but, when i feel a little low, I just head outside and count my blessings.

Sun, Apr 19 12:07pm · Isolation: How Do We Handle it? in COVID-19

I've never been too thrilled by the idea of exercise for its own sake although I faithfully follow the Pilates shown to me by the physio in the Transplant Unit in Edinburgh.Somehow, I'm not fully awake until they're done!

My response to Covid-19 and all its works is to start dancing again..I searched on the internet for all my favourite dance tunes from my youth; just pick your favourite decade ( mine is a secret!) and compile a playlist. It's great exercise and the memories of happy days just come flooding back.

When my husband saw me dancing to 'This Old Heart of Mine'( and that's a giveaway!) he said he could hardly believe that only a few years ago I was at death's door. We should never forget the miracle of transplant and the gift we have been given. Good times will come again when we won't have to dance alone. I know it.

Can I also make a small request? The Covid 19 stream is now becoming so large that we are all receiving many emails each day. It's lovely to hear from everyonebut could we keep this stream purely for Covid 19 issues? In itself it is a huge subject and likely to get bigger as time goes on. Thanks to all.

Sun, Apr 19 11:49am · COVID-19 and Transplant Patients in Transplants

@fiesty76 My thoughts are with you at this terrible time. I lived in the US many years ago and still have friends in Minnesota where it seems they have similar problems.. I worry so much about you folks right now. Here in Scotland, people are more or les saccepting the lockdown restirctions. Sunday papers today say over 95% accept the lockdown regulations although we have somweho don't ( Covidiots they are called in the press). Whether that will remain the case weeks from now is anyone's guess. All you can do is stay safe and avoid all those people who are flouting the rules. Sadly, many of them will get sick. As transplant patients, many of us have faced death before and we know what must be done to avoid it again. Stay safe.

Tue, Apr 14 11:06am · COVID-19 and Transplant Patients in Transplants

I must wholeheartedly agree with these words. My first weeks after my transplant were, in retrospect, quite difficult as my potassium levels were very high and I didn't seem to react well to many of my drugs. My tremors were so bad that a friend bought me a funny mug to hold my drinks as I could not hold any of the hospital variety. I treasure it this day. I also had a rare type of aphasia which affected my speech. My brain knew what I wanted to say but my voice could not translate the command. This was immensely difficult for someone known to talk quite a lot! My doctors were concerned that I had brain damage but, in the end, it was a rare but known reaction to tacrolimus. So…we have all faced these challenges and most of them will pass. Certainly, as far as I know, the hand tremors are temporary. Mine had gone before I left hospital.

The months following a transplant are experimental as far as your drugs are concerned as doctors search to find the right combination for you. One doctor told me it was almost an art rather than a science. These times will pass. I can say with my hand on my heart and there is nothing I did before my transplant
( and that includes fine craft work) that I cannot do today. And I never forget that this is all due to the sacrifice of one family whom I will never be able to thank.

Thu, Apr 2 11:02am · COVID-19 and Transplant Patients in Transplants

To all of those who liked my post about my neighbour playing his pipes every night at 7.00pm, I'd like to share this with you. Tonight at 8.00pm ( and I know you are a few hours ahead of me!) All of the pipers in Scotland are being asked to play outside in honour of our wonderful health and care workers who are risking so much to keep us all safe. They are asking pipers from all over the world to join with them. So, if you are lucky enough to know a piper, and I now there are more than a few in Minnesota, please pass this on.