Doing My homework

I have been looking online since I got the news anything I could find about lung transplants. Success rates, hospital ratings, surgeon ratings, after care, before care, just anything.

I have found for sure that the survival rates scare me. This is the best and most recent article I found regarding success rates.........
Lung Transplant Statistics in the U.S.
Article by Leigh A. Zaykoski (11,712 pts )
Edited & published by Emma Lloyd (16,921 pts ) on Jul 31, 2010

Patient survival after transplant depends on several factors. Lung transplant statistics for 2009 indicate that 95.6 percent of adult transplant patients survived one month after transplant. The survival rate decreased to 82.86 percent after one year and 66.96 percent after three years. Pediatric survival rates follow a similar pattern. Pediatric patients had a one-month survival rate of 97.30 percent. This rate decreased to 87.98 after one year and 64.57 percent after three years. Some of the factors that affect survival after a lung transplant include post-operative care, adherence to medication regimens, compliance with physician instructions, the presence of infections or other medical conditions and the amount of support a transplant patient has during the recovery period.

These #'s just don't thrill me, as a matter of fact when I see these figures transplant doesn't sound so appealing.

I understand this won't be a easy or pleasant process. I have read and fully understand that the surgery and recovery is brutal. One of the toughest as far as discomfort and pain goes from what I hear. However, it seems to be almost like giving birth for a woman. Extreme pain that you somehow forget because of the happiness of what you get from it.

I found a blog written by someone who underwent the transplant process and is writing about it. Sounds like my kind of person.

Here is how he explains the surgery...
www.newlungs.com

Question:
What is it like?

Answer:

What is a lung transplant "like"? It's like needing major surgery you dread at first but by the time you really need it, desperately hope will happen. In actuality, by the time you get the call--if you are lucky enough--you won't really care what it's going to be like, because by then it can't be any worse than what you've already been through.

Or, from another point of view, as I told my doctors, "Listen, I've had Periodontal surgery--nothing you can do will ever come close to that". As it happens, it's largely true.

But as far as what actually happens after you get the call, once the basic mechanism of getting you to the party has been accomplished, this is what you will likely experience:

1. Upon arriving at the transplant center, you will be delivered to a prep room on a gurney where you will receive an IV line and a mild sedative, possibly from a technician that seems to speak a language other than your own. Your spouse or one family member can usually accompany you up to this point, but after this, you are wheeled into the Operating Room alone. There, you'll be be put under general anesthesia and possibly hooked up to a cardio-pulmonary bypass machine (depending on whether you're getting a single- or a double-lung transplant), and the operation will begin. Your family will go to the waiting area where they will spend the next 5, 6, or 7 (or more) hours. Periodically, a doctor or nurse will come out to update them as to how you are doing, or if the transplant will even be performed. Often the donor organs will, upon closer inspection, be rejected prior to transplantation. Then the operation is called off and everybody goes home, only to again--hopefully--repeat the process all over again when another donor organ becomes available. This is actually a good thing, as long as the patient can withstand additional wait (not to mention the mental anguish), since a donor organ in poor condition will not lend itself to a successful outcome. Some patients have gone through this process two or three times before finally becoming transplanted. It is the mark of a talented transplant team that knows how to differentiate between good and bad donor organs.

2. Upon completion of the surgery, you are moved to ICU, where you eventually wake up on a ventilator and with all kinds of chest and neck tubes and urinary catheters stuck in you. Typically you will also have approximately 60 staples across your chest in what is called a clamshell incision, which runs from armpit to armpit under the nipples. On one side of the bed there will be a container with what looks like Hawaiian Punch that drains from your chest. On the other side there will be a container with what looks like apple juice that drains from your urethra. You will be on a small flow of oxygen through a nasal cannula and remain on the ventilator for a day or two. You will have a very dry mouth. It will be all you can do to try and ask for an ice cube or lemon-flavored swab to moisten your mouth. There will be one nurse that amazingly, will be able to perfectly understand your mumblings, but all others will ask you to repeat yourself over and over again. Periodically, a nurse will come in and administer a mechanized vibrator to your back to dislodge any mucous. You will think of and say many hilarious things, but they will not seem all that funny to you.

3. At some point, the ventilator will come out and you will be better able to talk. Things will be confusing, and you may even feel that the entire hospital is conspiring to kill you. This is usually an illusion (kidding). You may try to, or even successfully use the telephone to call home and tell them to come and get you right now, because you are "getting out of there". This will pass.

4. A nurse will at some point come in and help you out of bed and somehow get you to walk approximately 10 feet using a giant stand-up walker on wheels. You will get back in bed, totally exhausted, and wonder why everybody around you is so apparently happy.

5. The food will be so distasteful that you will be nearly unable to eat. You will find that the mashed potatoes are especially disgusting.

6. After about a week to ten days, you will leave ICU and get a bed in a private room in the step-down unit and be on reverse isolation in a ward with other transplant patients, possibly even some with organs from the same donor as you. The food will start to improve. A night nurse will be your friend as she takes the time to explain your medications to you and help you to gradually learn to assemble them yourself. Every day you will be dragged out of bed at 6 AM to be weighed and a mobile X-Ray machine will be wheeled in to X-Ray you in your bed.

7. A sub-contracting respiratory therapist will come in dressed in a Level 4 Bio-Hazard anti-contamination costume and administer Amphoteracin-B through a nebulizer twice or three times a day to prevent Aspergillus infection. A physical therapist will bother you at periodic times about pedaling on a sit-down bicycle and walking with a medium-sized stand-up walker on wheels. An occupational therapist will visit you with instructions on how to wash your butt while sitting down. A psychologist will wake you up one morning and tell you she (or he) thinks you are a prime candidate for post-transplant depression. This will haunt you until you realize that you are so happy to be alive that depression is the last thing on your mind. Much blood will be taken from your veins. Days will pass.

8. You might have a wild dream one night that will wake you up with a start in a cold sweat, wondering if you should try to go back to sleep, for fear that it will pick up where it left off. You will discuss it the next day with your favorite transplant coordinator, and ask if any of the details match what she (or he) may know about the donor's life. You will learn nothing. It will not occur again, but you will never forget it.

9. Your transplant surgeons will stroll in from time to time, and gradually you will realize that you are passing into another phase of recovery and that, sadly, you won't be seeing much more of them. You will continue to see your Pulmonologist. There will be nurses that you will grow to love, and others you will grow to hate. You will forget all of their names--except two or three--minutes after they leave your room. You will beg for better-flavored drinks and snacks. Some will bring them, others will forget.

10. After about two weeks of physical therapy and general care, your doctors and your insurance company will conspire to make you leave the hospital and enter an inpatient sub-acute rehab center, unless you are of such great health that they feel they can take a chance on sending you home (providing that your home is close to the center). Otherwise, you will have to get an apartment near the center until they are satisfied that you are in a position to be trusted walking, washing, eating, taking your pills, administering IV infusions, and all the rest that is involved in the recovery process. At this point you are two thirds of the way there.

11. From this point on, you will administer your own IV Gancyclovir infusions, maintain your Hickman catheter, flush your lines, eat as much calorie-laden food as possible, and attend regular clinic meetings where you will be given Spirometry exams and have chest X-rays taken. This will continue for what will seem like a long, long time. Also, you will be enrolled in an out-patient physical therapy program where you will actually start to gain back some of the strength you had before all of this started.

12. Eventually you will be able to sit in a chair without a foam pad, sleep without getting up every hour-and-a-half to urinate and then suddenly one day, you will realize that you can almost see ahead to a time when life will be sort of normal. And during all of this, you will be breathing room air.

I think I can handle that. That doesn't sound so frightening to me. Maybe because I am reading it from a living BREATHING person?

I need to make a note to myself to check the University of Washington's Transplant success rate. And the surgeons. Many sites including the persons above suggest a rating of 60 or better. That sounds reasonable.

He goes on to talk about many subjects and answers many questions (which I really appreciate). It is one thing to read these things from a website the hospitals put out.... It is an entirely different thing to read a patients own words from experience.

One of my fears is the immunosuppresant drugs that one takes for their lifetime after transplant. I won't bore you with all the articles, only to say... they are terrible. The prices are outrageous and I have read a lot about insurance companies not paying for them. They are taken every day, 3 times a day for your lifetime. Those along with steroids can cause so many problems. They are needed to keep an organ from rejection but cause kidney and liver failure as well as heart issues due to hypertension. They have also been known to cause (yes cause!!!) cancer. And, that is fairly common.
It's a roll of the dice how well someone will handle the post transplant meds.
Now to the cost.... He has made a list of sources to go for $$, So, I am copying that here. I will need it later.

Towards the end of his administration, President Bill Clinton--the best President a patient has ever had--signed into law a modification of Medicare that provides for unlimited free transplant meds, namely Neoral and CellCept. The limit under Medicare was initially 36 months post-op, which was then extended to 45 months, and then extended by this last law indefinitely.

The rest of the medications you will need may be covered for a period of time until your annual cap kicks in. For me, that usually happens about ten minutes after the first 90-day shipment, after which I'm on my own, shopping at my favorite transplant-friendly mail-order supplier (formerly Stadtlander's, and now Good Life Resources).

Expenses such as these can be deducted from your taxes, however, to whatever extent the law allows.

There is, however, another approach if you are extremely strapped for cash. Nearly every pharmaceutical company has a drug assistance program for financially needy patients that cannot pay for their meds. The programs vary from company to company. I recently found in the Gift For Life newsletter (www.donors1.org) a list of contacts at various drug companies with such programs. Here are the ones that are, I think, most appropriate for lung transplant patients:

Imuran (Glaxo-Wellcome) 800-722-9294 800-423-6869

CellCept/Cytovene (Hoffman-LaRoche) 800-285-4484 800-526-6367

Mycelex (Bayer Corp) 800-998-9180

Cyclosporin/Sandimmune/Neoral (Novartis) 800-722-9294 800-455-6655

Prednisone (Upjohn) 800-242-7014

Lasix (Hoechst-Marion-Roussel, Inc) 800-362-7466 800-522-3656

There are many others, but these are most of the ones associated with lung transplant meds, from what I can see. Check out the Gift For Life website (see above) and you may find more help there.

Obviously, this is the greatest challenge facing the post-transplant patient. However, with care and perseverance, it can be managed. It is never easy, but it is doable. As far as I'm concerned, it's nothing to get upset about (right).


So there is my homework for today. I still have my personal "paper work" to take care of. But, I have made progress. Bill, Brittney and I talked about my advanced directive and agreed how it should be handled. Now to just write it out and have someone notarize it.