In the package from my transplant hospital was another box, instruction sheet, a letter to me and a very large FedEx envelope.
What the heck?
The letter included instructions to take everything to my local hospital for a blood draw and drop it off at a FedEx store to be received before March 14th or I would be off the transplant list for a month.
What?
Apparently, while on the transplant list, a similar package will arrive every month and the exercise is to be repeated. If a set of lungs are a possible fit for me, they will use this blood for some testing.
Makes sense.
The process was interesting. The person drawing my blood really had to read the detailed instructions again and again to make sure she did everything as demanded. She opened the smaller cardboard box, which had a large screw-top vial in it settled into a cardboard mold. No movement allowed.
After reading everything and drawing the one vial of blood, she wrote the date and time on the enclosed label then stuck it onto the vial and re-wrapped a piece of bubble wrap around it. Then, she opened the large vial, removed more wrappers plus one that enclosed the blood vial in a small envelope then wrapped the excess around it. This was slipped into the large vial which was returned to the cardboard mold, the box was closed and slipped into the large FedEx bag.
It took a lot of time as we both wanted to do everything that was requested. Now I know both the tiny details and the process so I can help next month's draw.
Friday, February 21, 2020
Wednesday, February 12, 2020
A Side Note
Just a comment: I received a lovely message from a reader who expressed how she wished she could find a doctor like my Dr. K. It is not the first time people have brought this to my attention. A woman I met on this blog who had a husband with HP said the same thing to me. In the end, they never found one but she offered insight that I had missed.
Dr. K.'s not a specialist in Interstitial Lung Diseases like mine but a highly respected one for the Cystic Fibrosis community. Her focus with that group of patients was to avoid infections. She was very clear with me that I was to avoid crowds of people so no movies, no airplanes, no trains, no cruise ships, no orchestra concerts, no opera, no plays, no church, no anywhere where people gather. I remember sitting in one of the support groups and everyone was sharing where they were flying for summer vacations. Everyone was flying. Everyone except me.
In the ILD Support Group, the one other person with HP used to fly to Hawaii a couple of times a year. He did not understand why Dr. K. would not allow me to fly. After one of his flights to Hawaii, his lungs collapsed and he eventually received new lungs. We met just two months post-transplant and he said that he so wished he had listened to my Dr. K. instead of his doctors. Sadly, he died before his first anniversary of the transplants.
Dr. K. also was ahead of every curve. Acid reflux? No, I said. Yes, she said. Tested. Yup! Big time! At every turn she has been right. She has also been very proactive with my care.
The insight that I had missed was that Dr. K. was an expert treating patients with CF and not ILDs. She constantly watches my immune system, treats infections quickly and tests. Lots of tests. It's sad, all my friends who had an ILD or Obstructive lung diseases in my rehab class are all dead and here I am, alive and well enough for transplants sixteen-years after she took over my case.
I believe I would be long dead without the trifecta of Dr. K. leading my care, excellent medications and pulmonary rehab.
Keep searching for your Dr. K.
Dr. K.'s not a specialist in Interstitial Lung Diseases like mine but a highly respected one for the Cystic Fibrosis community. Her focus with that group of patients was to avoid infections. She was very clear with me that I was to avoid crowds of people so no movies, no airplanes, no trains, no cruise ships, no orchestra concerts, no opera, no plays, no church, no anywhere where people gather. I remember sitting in one of the support groups and everyone was sharing where they were flying for summer vacations. Everyone was flying. Everyone except me.
In the ILD Support Group, the one other person with HP used to fly to Hawaii a couple of times a year. He did not understand why Dr. K. would not allow me to fly. After one of his flights to Hawaii, his lungs collapsed and he eventually received new lungs. We met just two months post-transplant and he said that he so wished he had listened to my Dr. K. instead of his doctors. Sadly, he died before his first anniversary of the transplants.
Dr. K. also was ahead of every curve. Acid reflux? No, I said. Yes, she said. Tested. Yup! Big time! At every turn she has been right. She has also been very proactive with my care.
The insight that I had missed was that Dr. K. was an expert treating patients with CF and not ILDs. She constantly watches my immune system, treats infections quickly and tests. Lots of tests. It's sad, all my friends who had an ILD or Obstructive lung diseases in my rehab class are all dead and here I am, alive and well enough for transplants sixteen-years after she took over my case.
I believe I would be long dead without the trifecta of Dr. K. leading my care, excellent medications and pulmonary rehab.
Keep searching for your Dr. K.
Friday, February 7, 2020
FINALLY!
My transplant coordinator phoned yesterday afternoon to tell me I was back on the list. She had placed me on a "pause" due to the WC Medicare Set-Aside money still available. A lot of money. The financial head of the transplant clinic arranged with the hospital to accept a check for the full amount at the time of my admission for the transplants. Michael will then contact Medicare to let them know the account is closed. No more money. Yesterday, I moved all of the money from a money market account into the checking account so it is ready.
The list of things to do keeps growing: list of medications and dosages, front closing sports bras, reminder of all the things to throw into my luggage at the last minute like phone cords...you get the idea.
Yesterday's medical test was an echocardiogram and lots of fun with the new graduate student and the well-seasoned tech. All looked great. Next Tuesday, I am having blood tests to my immune system. Apparently, some post-transplant people have problems so they want to be proactive. What they didn't research in my files is that Dr. K. has already check this out for me. Of course. She is brilliant and always ahead of everyone. My immune system was amazingly healthy for being compromised since 2005 and didn't need any help.
I did need to remind Michael to not put his phone on mute or not answer a phone call or leave his phone in his car or...though we really don't expect it to happen so quickly but one never knows.
The list of things to do keeps growing: list of medications and dosages, front closing sports bras, reminder of all the things to throw into my luggage at the last minute like phone cords...you get the idea.
Yesterday's medical test was an echocardiogram and lots of fun with the new graduate student and the well-seasoned tech. All looked great. Next Tuesday, I am having blood tests to my immune system. Apparently, some post-transplant people have problems so they want to be proactive. What they didn't research in my files is that Dr. K. has already check this out for me. Of course. She is brilliant and always ahead of everyone. My immune system was amazingly healthy for being compromised since 2005 and didn't need any help.
I did need to remind Michael to not put his phone on mute or not answer a phone call or leave his phone in his car or...though we really don't expect it to happen so quickly but one never knows.
Tuesday, February 4, 2020
Listed then Paused
It has been a wild ride. We met with the surgeon last Thursday who glances through my file, said I was extremely fit, had a great heart and signed off as ready for transplants. Easy.
Then, my Transplant Coordinator came into the room. She wanted one more blood test to check my antibodies, which would take a couple of days to process. Again. I have none. Zero. Zip. That is the good news.
So we waited through the weekend and on Tuesday, she phoned with more questions. After plugging all the information about tests and activities of daily living and everything else into the special program, it spit out my listing number.
Loosely:
A number 80-90 is probably someone on a ventilator in a hospital.
A number 60-70 is probably someone in the hospital waiting for transplants.
A number 40-50 is probably someone pretty sick waiting at home.
My number was 35.5. Very low. I won't be transplanted soon! As I deplete, activities of daily living change, numbers get worse, this number will get higher. Michael thinks I will get the call for transplants in June. My guess is September. It could be next year!
Today, the financial person phoned. I still have money in my Medicare Set-Aside and Medicare won't pick up the check for new lungs while this is still available.
I am on hold again. Off the transplant list until we can figure this out.
After I drove home from my doctor appointment, I phoned Medicare. They explained that the WC claim is closed and the Medicare Set-Aside is in my name. It is my money. It is a lot of money. Medicare never rejected anything that was to be paid by this account so it was seldom used. The Medicare woman was fantastic. She told me to write a check for the whole amount to my university hospital and hand it to the financial person in the transplant clinic. Then, FAX Medicare to show that there is no more in that account and they will take over paying for the transplants.
I immediately phoned the financial woman but she hasn't returned my call. I plan to meet her Wednesday after I have an echo cardiogram in the transplant clinic and hand over the very large check.
It just can't be this easy. I am worried something will go wrong and it won't be accepted. Then what? So for now, I am not listed.
Then, my Transplant Coordinator came into the room. She wanted one more blood test to check my antibodies, which would take a couple of days to process. Again. I have none. Zero. Zip. That is the good news.
So we waited through the weekend and on Tuesday, she phoned with more questions. After plugging all the information about tests and activities of daily living and everything else into the special program, it spit out my listing number.
Loosely:
A number 80-90 is probably someone on a ventilator in a hospital.
A number 60-70 is probably someone in the hospital waiting for transplants.
A number 40-50 is probably someone pretty sick waiting at home.
My number was 35.5. Very low. I won't be transplanted soon! As I deplete, activities of daily living change, numbers get worse, this number will get higher. Michael thinks I will get the call for transplants in June. My guess is September. It could be next year!
Today, the financial person phoned. I still have money in my Medicare Set-Aside and Medicare won't pick up the check for new lungs while this is still available.
I am on hold again. Off the transplant list until we can figure this out.
After I drove home from my doctor appointment, I phoned Medicare. They explained that the WC claim is closed and the Medicare Set-Aside is in my name. It is my money. It is a lot of money. Medicare never rejected anything that was to be paid by this account so it was seldom used. The Medicare woman was fantastic. She told me to write a check for the whole amount to my university hospital and hand it to the financial person in the transplant clinic. Then, FAX Medicare to show that there is no more in that account and they will take over paying for the transplants.
I immediately phoned the financial woman but she hasn't returned my call. I plan to meet her Wednesday after I have an echo cardiogram in the transplant clinic and hand over the very large check.
It just can't be this easy. I am worried something will go wrong and it won't be accepted. Then what? So for now, I am not listed.
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