Hi everyone, I got a call from the transplant team last week saying that they are re- starting the transplant operations on a limited basis and the asked me to go up for a tracking appointment. I have been shielding since the start of March and am very reluctant to go to the hospital at this time. It’s really unnerved me and I don’t know what to do. They say that the appointments are staggered and we will all be wearing masks but Evan getting there is going to be problematic. I have been on the list for a year and a half now and got called in right at the beginning of the pandemic only to have it cancelled at the last minute due to the virus. It’s been a real rollercoaster of emotions.
Has anybody had a recent tracking appointment and if so how was it?
I’m feeling quite pressured into going but I don’t think it’s safe yet. On the other hand my breathing is marginally worse and I don’t know when or if the situation with the virus will change for the better.
Anyway, I’m grateful for your thoughts and experiences .
Take care everyone, stay safe and keep smiling ,
Love K
Written by
Kelda
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Oh my Love please go. I had all my Tracking Appointments every 3 months for 3 years, I was collected by Ambulance (Arriva)2/3 hour Drive. I Have not had a Transplant (to my own Fault). But I encourage everyone who are on the waiting List to Go through with the Journey of Transplant. I know you have your own reasons, This Virus seems to be wearing thin now, The Hospital will have all the Safety Guards ready for you. So be very Brave. Don't live with " If Only" like I have. Lots of Love, and My Strongest wishes for You Dear Kelda. XXX C.
Sorry it taken me so long to reply to your lovely message. The whole situation has made me so anxious. I have spoken to the transplant coordinator and decided to leave it a couple of weeks before going in so I can be better prepared both mentally and with regards to ppe and transport. I need to be able to get there as safely as possible and feel confident that I am doing all I can to lower the odds of me getting the virus. I don’t think this is going to make much difference in the long run to a transplant. Having said that I need to get back on the horse sometime and I need to be brave. We know there are no guarantees and this pandemic is a major risk on top of all the other risks.
I hope that you remain well and are surrounded by your loving family. Thank you so much for your advise. This week had been so stressful and your support means a lot.
Take care dear Hacienda, stay well and keep smiling .
Here for you My Love. You Know your own Inner Thoughts & Gut Feeling. You are Bound to feel Anxious . Talking to the Transplant Coordinator will have put your mind at rest and given you longer to assess every thing you need to. It is a worrying time ,I know, so when your Ready, You will be in a better frame of mind. Thank you for telling me Kelda, All my thoughts & Best wishes are with You. Love n Hugs. XXX C.
I know it’s really frightening,I’m frightened to go out myself,but am going for walks in quiet areas.
If your breathing is marginally worse,perhaps you need to have a think about it.
But in the end it’s your decision.
Look after yourself
I can understand you are worried K who wouldn't be, worried about the op worried about covid, worried about getting there.
The hospitals wouldn't have opened up to do the op if there was a risk so they obviously feel pretty certain they have things under control from that view
Not good to feel pressurised, but why don't you have a chat with the hospital transplant counsellors who can probably arrange transport for you. Perhaps see what the situation is on that first and just tell yourself you will ponder the best way forward.
You will come to the right decision for you at this time.
I have asked to speak with a counsellor and have put back my appointment by a couple of weeks to give me time to prepare with getting safe transport and ppe and also physically and mentally. I think it was because it was so sudden that I became very anxious and stressed . This way I get a little more time to get my head around it and to properly evaluate the risks and do what I can to reduce them.
I feel a lot better about it now I’ve made a decision. I will get there but in my own time.
Thank you for your support. These are anxious times and your advice really helped
I keep wanting to reply, and say something helpful, but all I can think is; what a lot to worry about. I'm worrying about making a journey so I can hardly say to you, don't worry, go for it. But, if you can go to the hospital hopefully this will be a great step in the right direction for you.
Thank you for your understanding and your thoughts. This week has been so stressful trying to make this decision. I have now decided to delay my appointment for a couple of weeks so I can get some more information about the hospitals strategies and talk to a counsellor. It also gives me a chance to get my transport arranged safely and a correct mask. I need to feel confident that I’ve done all I can to protect myself from the virus , then I can be brave.
I’ll let you know how I get on.
I hope you have a safe journey and that you find joy at the end of it.
I think the issue is if you don't go, the people who do will take precedence when the next pair of lungs come along, that means you will be pushed back on the list. They have to be sure that you are still fit for transplant before they can offer you the next pair of lungs. I would go. Take precautions as always. The hospital are professionals. They would not unnecessarily put you at risk . This is important and although worrisome, sometimes some risks are worth it. Best wishes whatever you decide.
Hi Cas, as usual your thinking is apt and to the point. At the end of the day it’s a question of faith and trust, the risks are now higher but the reward could be amazing.
I feel I am now ‘ high’ on the list and I don’t want to jeopardise that, but I don’t have a lot of trust or faith in the way my government have handled the pandemic and I don’t think I really believe that they have it under control. I heard of a report which said that 50% of a hospitals staff tested positive with no symptoms and that 25% of operations during the crises had unfavourable results over the norm. So I think the odds are now worse, but that doesn’t change my situation and the virus is not going away. I’m going to ring them again and see if they can put my
Mind at rest a little. Also my daughter who works in carehomes and I havn’t seen since it all began said she will try and get a test so she may be able to come and take me . We will prepare as best we can and try to be brave.
Thank you for your thoughts. I hope you continue in good health. You are amazing.
I do understand what you mean about the government and the handling of the pandemic. But I must say what's on my mind. Whatever, your thoughts about the government (yes, very chaotic lot) the next pair of lungs will still arrive at your hospital and be transplanted into the next patient who matches those lungs. If you dither they will simply pass them along. The hospital, will not wait for you to decide what you want . As you already know it is a long, long wait for lungs. Unlike America where their organ pool seems never to run dry, for us in Japan and the U.K. the wait is lengthy. In between being listed and transplant more than half of those on the list will die waiting. All it takes is to catch an infection, or a nasty exacerbation or simply a worsening of symptoms. We were both listed because we are / were very much at the end of our ropes. So, I hope your hospital can give you reassurance and your daughter can go with you.
Having made such a lengthy, boring speech 😐 in the end I must say you have to decide for yourself. Take good care. xx 🙋💓
Good morning my son has CF and four other diseases. We have been isolating but have attended our clean hospital appointments. We both wear masks and gloves. I am sure the hospital understand your concerns but they must be confident that they can keep you safe.
Thank youSunfloweronline, it is always hard making decisions like these. I hate being so indecisive. It makes me anxious , so that’s very good advice. I’ve now decided to delay the appointment by a couple of weeks so I can be better prepared and ready to brave the world again. I feel much better having decided after weighing things up all week.
Thank you for your support. It was very welcome and helpful.
The hospital is the safest place you can go to as they will have ppe on and separate areas for covid and non covid and social distancing will be done for you and give them a ring and they can reassure you before you visit.
Thanks for all your comments. I found them really helpful. I will let you all know how it goes when I do go in for my tracking appointment . I really appreciate all your support. It so lovely to know you are there.
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