Just wondering...sometimes after the call, it doesn't work out?

Posted by jodeej @jodeej, Jul 5, 2018

My husband is waiting for a liver. I’ve read and heard that sometimes you get the call only to find out after you get to the hospital that it won’t work. Does this happen often? I don’t remember being told this in any of our appointments. I want my husband to be prepared in case it happens to him.
Blessings,
JoDee

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@rosemarya

I hope that you mentioned the room condition to the management of the motel. I have never been in Jacksonville so I am unfamiliar with it. You are correct in stressing the need for safe environment for transplant patients. I want to add that this motel is not associated with the Mayo Clinic, other than locational name.

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@rosemarya
Where us this place in Jax…want to alert Mayo to NOT put it on the list they give you at evaluation.

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@jeanne5009

Where in Jax did you stay?

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@jeanne5009 There is a Hampton Inn one exit south off 202 (JAX Beaches, Marsh Landing). You cannot miss it after you exit. Also, for 10 weeks we have rented an apartment and furniture at Ocean Park. No carpeting in formal areas so easy to mop up the dust. Screened porches, better appliances including washer/dryer. Pool if you need it and gym. Good staff. They do 3 month rentals.

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@myson

@jodee. Our son is at Mayo today for his 3 month evaluation (double lung). The first checkup was April after a 6 month deferment. His lung breathing capacity had decreased 10% so we are curious to hear about today's findings. Getting back to you about using social media to get the word out that your husband needs a liver transplant. Also, there's your local newspaper. Don't be afraid to call a local reporter to ask about an article asking for help. After all, it takes a village, right? Also, notify the business your husband works/worked for. People are unaware that they can help, also unaware that their own liver will rejuvenate. There is so much to learn and the medical community with research beyond our comprehension is amazing every day. Have a blessed day.

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Hi @jodee, How is your son doing after checkups? My husband received a double lung transplant just over two years ago and he has a lot of ups and downs in his breathing capacity. A decrease in pulmonary function is always a sign of something going on and triggers his team to investigate and treat.

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@hansonca03

Hi @jodee, How is your son doing after checkups? My husband received a double lung transplant just over two years ago and he has a lot of ups and downs in his breathing capacity. A decrease in pulmonary function is always a sign of something going on and triggers his team to investigate and treat.

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@hansonca03 you have tagged the wrong person, you want @myson. My husband's head a liver transplant this past July.myson My husband's head a liver transplant this past July.

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@hansonca03

Hi @jodee, How is your son doing after checkups? My husband received a double lung transplant just over two years ago and he has a lot of ups and downs in his breathing capacity. A decrease in pulmonary function is always a sign of something going on and triggers his team to investigate and treat.

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hansonca03 @hansonca03, I want to welcome you to Mayo Connect. I am a liver/kidney transplant recipient, so I don't have experience with lung transplant. But from what I understand it is a complex surgery that requires a well coordinated recovery. I met a woman with a new lung transplant at my local lab once, and she was wearing a mask that she needed for protection. I don't know how long she will wear it or if she'll choose to wear it whenever she goes to the lab.
You say that your husband has had ups and downs with his breathing capacity. Are you near his transplant team to get treatment? I can imaging that that must be frightening for you when it occurs.
I want to introduce you to @myson. She recently shared the news that her son had a double lung transplant early November 2018. If you scroll back through this discussion, you can read about her son's experience from her eyes. I think she would appreciate meeting you. Your experience with lung transplant as a caregiver is a special gift that can be a comfort and blessing to her and to other lung transplant patients.
How is your husband doing at this point?

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@hansonca03. Good morning from South Carolina. My son did receive double lung November. He is doing great and just sent us home. At 10 weeks he is driving and desires more independence. We love it but still worry all the time. I understand the fear when spirometer readings go down. He now has a fungal infection. Have you had to deal with that? The meds for just that are very expensive.
He has 3 girls, 12 and under. They are doing so good dealing with the separation plus anxiety and look forward to having him home.
The drs and staff are so amazing. It has been a real learning experience.
I am curious about the first 2 yrs. Please feel free to share with me any time. Thank you @rosemarya.

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@jeanne5009

@rosemarya
Where us this place in Jax…want to alert Mayo to NOT put it on the list they give you at evaluation.

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@jeanne5009 The Mayo Inn that is connected to the Mayo Clinic. Not the hotel that is disconnected. Room 211 specifically. If they wish to check me, they can pull out the nightstand on the right side of the bed that is to the right when you enter the room. There is no denying. And get this…..we brought our son 8 days after surgery to this room and beginning with the first night there was no hot water for 3 nights. I had to boil water on the stove for cleaning our bodies, etc. I was just about hysterical with worry.

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@myson

@jeanne5009 The Mayo Inn that is connected to the Mayo Clinic. Not the hotel that is disconnected. Room 211 specifically. If they wish to check me, they can pull out the nightstand on the right side of the bed that is to the right when you enter the room. There is no denying. And get this…..we brought our son 8 days after surgery to this room and beginning with the first night there was no hot water for 3 nights. I had to boil water on the stove for cleaning our bodies, etc. I was just about hysterical with worry.

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@myson,
I’m sorry that you had a bad experience at this hotel. We certainly don’t want your visit as a patient or caregiver to Mayo Clinic to be marred by a bad experience with your hotel accommodations. This facility is located on the campus of Mayo Clinic in Florida but is independently operated. The hotel is actually scheduled to close in a few weeks. The building will be demolished and there are future plans for a replacement. There are several other hotels on or near our campus that are available to serve the needs of our patients.

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@myson

@hansonca03. Good morning from South Carolina. My son did receive double lung November. He is doing great and just sent us home. At 10 weeks he is driving and desires more independence. We love it but still worry all the time. I understand the fear when spirometer readings go down. He now has a fungal infection. Have you had to deal with that? The meds for just that are very expensive.
He has 3 girls, 12 and under. They are doing so good dealing with the separation plus anxiety and look forward to having him home.
The drs and staff are so amazing. It has been a real learning experience.
I am curious about the first 2 yrs. Please feel free to share with me any time. Thank you @rosemarya.

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@myson That's wonderful that your son is doing so well, what a relief that must be for all of you. It's such an incredible feeling when you finally have that transplant. I presume the fungal infection can be taken care of easily.
I read about your experiences at the hotel. That's really terrible. It's a shame that the hotel has the Mayo name, making it sound associated with the Mayo Clinic.
JK

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@contentandwell

@myson That's wonderful that your son is doing so well, what a relief that must be for all of you. It's such an incredible feeling when you finally have that transplant. I presume the fungal infection can be taken care of easily.
I read about your experiences at the hotel. That's really terrible. It's a shame that the hotel has the Mayo name, making it sound associated with the Mayo Clinic.
JK

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Was this the Marriott in Jax?

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@keggebraaten

@myson,
I’m sorry that you had a bad experience at this hotel. We certainly don’t want your visit as a patient or caregiver to Mayo Clinic to be marred by a bad experience with your hotel accommodations. This facility is located on the campus of Mayo Clinic in Florida but is independently operated. The hotel is actually scheduled to close in a few weeks. The building will be demolished and there are future plans for a replacement. There are several other hotels on or near our campus that are available to serve the needs of our patients.

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@keggebraaten So happy to hear that this place will be demolished/replaced. I knew it wasn't a matter of just housekeeping; so much needed replaced. We did rent an apartment for 3 months which was wonderful (Ocean Park).

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@jeanne5009

Was this the Marriott in Jax?

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@jeanne5009 It is advertised as a Marriott property. So convenient for very early tests but no place for anyone with respiratory issues (or anything else). It was very expensive — appalling.

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I have been called for liver 6 times. Been sent home each time. So it doesn't always work out

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@renaefield

I have been called for liver 6 times. Been sent home each time. So it doesn't always work out

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renaefield @renaefield, Welcome to Connect. I am a liver/kidney recipient, but I am not sure that I can begin to imagine the disappointment you must have experienced. (I did learn after my transplant that my team had rejected organs for me on several occasions).

Connect is where we can share our experience and learn from each other. In the transplant group there is a wide variety of topics and conversatioins happening. I want you to know that you are welcome to join in anywhere, and at any time with your thoughts or questions, or simply to take to others who are like yourself.

How far do you live from your transplant center?
How do you feel? Have you been given any indicatioin of why they sent you home, or how long you might have to wait until transplant?

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@renaefield

I have been called for liver 6 times. Been sent home each time. So it doesn't always work out

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@renaefield I can only imagine the disappointment to be sent home after having your hopes up. I have heard that can happen quite a lot. I was fortunate, it never did for me.
I don't think my transplant center ever did reject an organ that they were considering for me, because I am sure they would have called as soon as one was available for me to be there and ready if there was an organ. As it was, when I got the call they did not have the liver in my transplant center yet. They told me to get there right away, so I did, getting there at about 2:30 or 3:00 in the afternoon. The transplant did not occur until 12:30 A.M.
@rosemarya asks some good questions, I am interested in also.
JK

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