What are the financial challenges after transplant with medicare?

Thank You for the info, for I was hoping the feeling would come back, however like yourself - I will accept it as my new normal. Did you have a "panting" type breathing after the transplant ? And if so how long did it last? I'm only 5 months post Liver and Kidney transplants.

@benlam11, I did not have experience any breathing issue like you describe. I was sore and it hurt to cough or take a deep breath in the early recovery. I had a device that I had to blow into to build up my breathing and clear my lungs and airways, though.

I had been fairly active as a walker and a hiker in my pretransplant time, until I became very ill at around 9 months before transplant. I never had a breathing problem before, so that could be partly why. Did you have any breathing issues or underlying condition that might be a factor here? Does this happen all the time? Does it happen when you exert yourself? What have your doctors said about it?

Lastly, After I had been on 5mg daily prednisone for 5 years, I was able to taper off of it. Then I developed a type of asthma that is defined as exercise induced asthma and it causes labored breathing for me when I exert - as when I hike uphill, It is also triggered by allergies and humidity. But that was 5 years after my transplant.

I am also a liver/kidney recipient. Did you have both at the same time? Same donor?

I received both organs at the same time (now 5 months ago) from the same donor. I exercised 5 days a week (aqua aerobics, Yoga, Gym, etc.) and was very active. I never had any breathing issues and now it's only when I exert myself. This started with the transplant. Same as you, when I walk uphill, climb stairs,exercises, etc. it's a trigger. When I bring it up with Doctors (even at the Mayo) they just ignore it. I tapered off Prednisone, however now my white blood cell count is at a critical level (even though I feel great) and they placed me back on 5 mg of Prednisone. I'm still required to do blood work every two weeks - and may have to go back to weekly.
I received a prescription for NEUPOGEN two weeks ago, however my PART D prescription plan is a nightmare attempting to get it approved. I will sign up for a Plan next year (especially since they are doubling the price - I guess hoping that most Seniors will not notice it since they are doing it via the deductible).

It sounds like your body is doing a lot of adjusting, and that is okay. Be kind to yourself and don't overdo it and give it time to heal and to rest.
We have come to the awareness that I must have had the exercise induced asthma prior to my transplant, and the prednisone could have been masking it until I got off the prednisone. At 5 months out, I can understand that it is not a priority right now.

Prednisone is a drug that again is increasing my blood sugar (120 to 150), while when I was not taking it it averaged 20 points lower. I hope to be free of this medication as soon as possible.

I'm at the point that I must be active again, and I still have many food, outdoor and mobility restrictions. Six weeks after my transplant I had a carotid artery surgery and had a minor right side stroke. So I still have physical and occupational therapy and I'm about 80% back. The Last 4 months have been "interesting", however I'm grateful for the Mayo's excellent doctors - even though I think they are in a hurry to push you out the door, since they desperately need bed space as they are doing an incredible number of transplants.

I also exercised pre transplant to get in shape and was very surprised at the shortness of breath when I started walking again after surgery. This has improved over time, but blood pressure remains high. Also, like you I have been put on 5mg of prednisone a few weeks ago because it was believed that Cellcept was interfering with white cell production. The copay for the Neupegen was $87. Within a week of the shot my white count remained low and I ended up with an infection, so was admitted to the hospital where I received four more Neupegan shots over the course of a week. Fortunately there is no copay for in-hospital meds and fortunately I did not need to pay over $350 in co-pays for the medicine. This would have been tough. My white count and neutrophil level have remained at normal levels for a couple of weeks now. It is ironic that hospital care cost me nothing out of pocket, while outpatient care can come with such high patient costs. From the insurance company's point of view, I would think they would want to keep outpatients cost lower to provide incentive to cut down on hospital stays.

So with my follow-up visit last week, blood numbers are good, liver function is perfect--the surgeon's comment--but creatinine and potassium are high. Prednisone was cut to 2.5mg per day. The doctor told me that adjusting meds for transplant patients is not "the science of medication," it is "the art of medication." Basically meaning it is trial and error. For me, the worst thing during recovery is drug side-effects. There is no amount of exercise, diet adjustment, or positive thinking that makes the dizziness and head fog go away. It becomes part of a new reality. At least so far. The doctor is sympathetic and tells me to be patient in the first six months.

Getting back to the topic of this discussion, the challenge financially for those of us on medicare is to find the best Part D plan we can before December 15. Almost an impossible task with our prescription list changing weekly. Using the Medicare calculator, my estimated co-pays total at least $1200 per year.