Lung Transplant Info & Stories from Members

DOB: 2/28/40
City, State: Kansas City, MO
Date Listed: 5/16/99
Center, Location: Barnes Jewish, St. Louis, MO
Type: Single

History:

• Am to lose 60 pounds
• Enter a formal rehab,
• Maintain control of diabetes
• Followup evaluation in May of 2000

Age: 55
DOB: 4/18/44
City, State: Kentucky
Listed 9/24/98 at Jewish Hospital in Louisville, KY for a bilateral lung tx

I have Alpha 1 and bronchiectisis. My pulmonary Dr first recommended transplant to us 5 years ago. I went for evaluation Feb 27, 1998. First problem was bone density. I was on meds until June to build up my bones. On June I had 8 days, not consecutive, of tests, x-rays etc. In July I began intensive rehab, continuing it at home still today. I remain very hopeful positive.

DOB: 8/12/44
City, State: Kentucky
Date Listed: 11/12/98
TX Center: Vanderbilt, Nashville
Type: Single

History:

1. Some test were done locally and forwarded with records.
2. Arrived in St Louis on Sunday November 8.
3. Monday morning started the 3 days of rigorous testing.
4. Thursday 11/12, 2:00 pm: Assessment meeting, placed on list and discussed transferring someplace where the wait was shorter. They suggested I try Vanderbilt.
5. Made an unscheduled trip to Nashville to check out Vanderbilt. At that time met everyone in the transplant office, also one of the Pulmonoligist and was shown around the hospital. Was impressed and gave the OK for record to be transferred.
6. January 12,1999: Saw Dr. Ely and had a few more tests and saw their social worker. They had a meeting the following morning discussed and decided to transfer me.
7. February 12: Appointment to meet Dr. Pierson who is the Chief of Surgery.
8. Required to call in every Thursday to let them know how I am doing.
9. Go back every 3 months for clinic.
10. June 23,1999: Call from Vanderbilt saying they thought they had a lung for me. Turned out not to be a match.
11. September 4, 1999: Dry run to Nashville. Lungs were not useable.
12. Jan received her new lung on 9/28/99 at 2:00 am.

Update: 9/30/99
Subject: Update on Jan Costilow
Hello Everyone
Jan has the healthy lung of a non-smoking 34 year old man. No problems so far and all are amazed at how well she is doing. She will be in the hospital for a week in intensive care. When she is released from the hospital she and Gary will be living down there for about three months. She is talking very little because of the tubes they took out of her throat and her throat is very sore. She is breathing on her on. Thank You God.

The other lung went to an elderly gentleman and he is also doing good.

You can send cards to:.

Jan Costilow
128 Village at Vanderbilt
Nashville, TN 37212
phone: 615-963-9871 they are on central time

Will update you when I hear anymore. Her brother came home tonight and will not go back down until they are in their apartment.

Take Care and God Bless,

— Yvonne in KY

Update: 10/8/99
Just got a call from Jan’s brother and she is doing ok. Yesterday was not a very good day for her but it was better last night. They have all but one tube out of her I understand the picc tube will be left in for six weeks. She is sitting up, getting up, and had her hair washed yesterday and (prednisone is taking over with terrible mood swings—I am saying this). Yesterday was Gary’s birthday and Cecil and Elizabeth made him a birthday cake and took it down to him. Jan and Gary are hoping to go into their apartment by tomorrow. Will let you know more as soon as I hear someting. Take Care and have a good breathing day.

— Yvonne in KY

Update: 10/9/99
Hellooooo from Jan,

Thank goodness, before they killed me. Just kidding, actually I had the best surgeon in the world. That’s my opinion, he was a true southern gentlemen. I used him a couple of times, pulling rank and got exactly what I wanted :^). I received very good care!

I wish I was ready to run a foot race but I have to learn patience. Guess I expect to much of my self to soon. Frankly I can’t remember a lot of what happened when. Time has run together and I wanted to remember every detail so I could share with others who are waiting.

It is my understanding that I have done extremely well. The schedule is still extremely hectic. At this time I am getting infusions 3 times a day which takes 1 hr each. Gary is in the process of learning the procedure and most probably will be on his own Monday. He is doing a wonderful job and I will never be able to thank him enough. I couldn’t have had a better support person. Without him and the support of all my friends and family I couldn’t have done it and will be forever thankful.

Please keep those prayers coming, they really work. I am sorry to have to tell you that a complication has arisen. My new lung has developed an abnormality. I have clinic Monday morning to start testing, so as to try and find out what is going on. I will let you know what I find out as soon as possible.

Personal mail at this point is much appreciated but can’t deal with list mail just yet. Thank you all so very much for the cards, calls and visits. God bless us all.

Much Love,

— Jan

Update: 10/13/99
Jan wanted me to send out an update on her condition as she has not been up to par and the doctors have been keeping us running during the past few days.

She has been retaining water and her feet and ankles are about twice normal size. The doctors feel that there is also fluid in her lungs. She had gained 10 pounds (fluid) while in the hospital. They put her on a medication that is reducing the fluid and it appears that it is working. She has lost about 7 pounds since starting the medication. She scheduled for blood work this morning, and tomorrow blood work, x-ray, cat scan and then a bronch if necessary.

I will do my best to keep you posted on her progress. I want to thank all of you for your support, cards, letters and phone calls. I’m sure that things will turn out OK; but a prayer or two wouldn’t hurt at this time.

Thanks a million,

— Gary C.

Update: 10/14/99
Good News! Jan’s appointment at the clinic today went quite well. The swelling in her feet was partially gone, she could walk better and longer and her lung x-ray looked very slightly better. Dr. Loyd told her to continue on the medication (lasix) and come back for another x-ray, blood work and checkup Monday AM. No cat scan or bronch at this time!! Needless to say, that pleased Jan immensely. She is hoping to feel well enough by Monday to finally get over to Dayani and start her physical workouts. She doesn’t care to much about laying around and watching TV.

I promise no late night, wild parties this weekend.

Thanks for the prayers, keep it up, they’re working!

Appreciate it!!

— Gary C.

Update: 10/15/99
Jan was feeling a little puny when she got up this morning. We had an appointment with the Social Worker and Psychologist at 10AM so had to push ourselves in order to make it. It was pretty much a waste of time; he wanted to know if we were suffering with any regrets or depression or anxiety. None on all.

We got out of there at 11am and went for a walk around our parking lot. She was able to walk the longest distance since surgery (1 1/2 laps). After lunch she laid down , rested and took a long nap. She was feeling a lot better when she awoke. Now it’s time for another walk, then I’ll need to fix some supper. We’ve got a quiet weekend ahead of us and then art out again with appointments in the Clinic and physical therapy at 8AM on Monday. Thanks for your continued interest and concern. Will keep you posted as best I can.

Appreciate it!!

— Gary C.

Update: 10/26/99
YAHOO, NO O2 :^) !!! I had been doing without it around the house and even showered without it but hesitant to try it at rehab. Today When I went in I told them I wanted to try it without the hose in my nose. Sats stayed 94 and above. I am 1 happy camper. I feel better today than I have since surgery. Still weak and shaky.

Some changes in medication. Lasix has gone from starting at 20mg, to 40, to 160, to 80, now down to 40. There is still some fluid on the lung. Hopefully it will be gone soon. They reduced the Neoral (anti-rejection drug) from 400mg to 250. I am in hopes that reducing those two drugs will make me less weak and shaky. I started my last round of infusions yesterday which last for 2 weeks. Then I can get rid of this picc line.

I am working hard at Dayani (rehab) doing a little more each day.

God is good and I am blessed to have you all. I love you, miss you and hope to be back on the computer full time before much longer. Keep me close to your heart and in your prayers, as you are in mine.

Much Love,

— Jan AKA Miss Bee Haven (but not lately) #123 Transplanted 9-28-99 @ Vanderbilt

Update: 11/10/99
Just a short one to tell you the good news before Jan does. Don’t know which of us is the happiest.

It has been 6 weeks yesterday since surgery and we went out to dinner to celebrate. We both kinda over ate a little bit. Guess that’s OK since we both have lost some weight while here. (I’m sure the cause of that was my cooking.)

Went for a Pulmonary Function Test yesterday. Her FEV1 was 62% ( 10 % before transplant), FVC 80% ( 36% before). I expect it to continue to improve for a while yet. It is possible she may have maxed out, but doubtful. Continued healing and rehab at Dayani should help these numbers go higher.

We received an OK from the doctor to make a trip to Richmond this weekend. Jan wants to pick up some more clothes and get her hair wiggled. There is a party coming up on the first of December and she wants to be properly attired.

We also received an O.K. to make a trip to Mississippi for turkey day. I’m sure we will put on a few more pounds there. Can hardly wait.

The fact that the Dr. is allowing us to make these trips seems like a positive sign to me… Maybe we will be able to move back home earlier than anticipated.

Thanks again for all the support, prayers, cards and e-mail that you have provided…

Couldn’t have made without you.

Love to all,

— Gary C.

Age: 60
DOB: 3/20/39
City, State: Russellville, Arkansas
Date Listed: 5/8/99
TX Center: Barnes-Jewish Center, St. Louis, MO
Type: Bilateral (if available—otherwise either right or left single) - see history for explanation

History:

1. November, 1998 — Barnes-Jewish advised I didn’t qualify for LVRS due to amount of lung damage and CO2 retention. They would only consider TX evaluation if heart tests showed no disease.
2. December, 1998 — Had heart cath done at Baptist Hospital in Little Rock, Ark—showed no disease or heart problems.
3. May 3&4, 1999 — TX evaluation at Barnes-Jewish consisted of only two days of the usually required testing as the heart cath done previously. Was officially listed on May 7, 1999.
4. The evaluation disclosed lung damage is the same on right and left— quite diffused but with no nodules. However, I am blood type AB therefore on the "uncommon" list. Of the 400 tx listed at Barnes, there are only 12 type AB; donors of this type are very few so a single lung may be available before double (fortunately, I can use a right or left) and Dr. Lynch (Barnes-Jewish Transplant Surgeon) advises a person can survive with one good lung.
5. I am now told by Barnes to research emergency flight arrangements—There are only two ahead of me on the list but Barnes only did two AB transplants last year. They advise I could be called in less than a year or wait three years.

Age: 46
DOB: 11/22/52
City, State: Garfield Heights, OH
Date Listed: 6/25/99
TX Center: Center Cleveland Clinic Foundation
Type: Single (Right Preferred)

History: Evaluated and refused LVRS at University Hospitals-Cleveland October 1998. For insurance purposes referred to Cleveland Clinic for transplant evaluation.

Due to proximity to hospital (17 minutes door-to-door) evaluation spread out from February–May 1999. Visited Clinic on six (6) dates for all the usual testing and removal of a nonmalignant polyp from the colon. (ouch)

Currently in pulmonary therapy biweekly at Marymount Hospital, and trying to gain weight. I was 52Kg (114.4lbs the evening of my "dry run" August 28, 1999.

Update: December 10, 1999
From: Karen VonKaenel
To: EFFORTS
Sent: Friday, December 10, 1999 8:53 AM
Subject: [EFFORTS]

Sam got THE CALL I am forwarding this for Sam Jones. Hopefully, the lung was good and Sam is in surgery right now!!!

Karen hey

Please tell ’em to stop my mail. Surgery is scheduled for 9:00 this morning. Cleveland Clinic. thanks for everything

— Sam

Update: December 12, 1999
Hello All, I received the post below from Sam’s Mom this morning. As you can see, it is very good news. Until he has a room of his own you may send him a message through his Mom and she will print them out for Sam.

Have a good day, Karen

good morning Karen we went down to see Sam last night and they have the breathing tube out he is doing well if all goes well, he may be moved out into another room tonight Please tell all his friends I have printed their letters and when he is able to have mail I will take them down for him to read I tell him about them for now but this way he will be able to see names I will be in touch many thanks for your love and concern for Sam his mother Lou

Update: December 14, 1999
Hello Everyone, This is the message I received from Sams Mom today. As you can see, Sam is just doing great and he really is enjoying all the well wishes.

Karen, in a message dated 12/14/99, 3:31:12 PM, EST, writes:

hi Karen let everyone know thanks ever so much for sending wishes love prayers caring for Sam he is sitting up still in ICU but hopeful of being moved to another room soon, several of the people have already been moved up, he is just waiting. Still on oxygen though the dosage is much less than his daily use before. We only go down in the morning, his son goes in the evening—love to all Lou and hey, you are doing a great job, thanks much

Age: 47
DOB: 2/15/52
City, State: Tennessee
Date Listed: 1/8/98
TX Center: Barnes-Jewish Center, St. Louis, MO
Type: Bilateral
Reason: Emphysema

History:

June 1996 — My Pulmonary Doctor, Dr. Yogesh, first recommended LVRS. He sent CT-Scans to Barnes. They informed me that I would not benefit from this procedure but would consider a transplant if I stopped smoking. I wasn’t sure about a transplant at this time. I stopped smoking in October 1996.

Jan.1997 — Since I stopped smoking Dr. Yogesh suggested I see another Doctor in Memphis about a LVRS. I agreed. Dr. Cole looks at all my test results. He schedules all the necessary testing. Dr. Cole seems to think I would benefit from the LVRS. Now I have two opinions contradicting each other. After investigating the LVRS option; I discovered the results may be limited and I would probably need a transplant within 5 years. I denied my option for a LVRS.

Aug. 1997 — Discuss my transplant option with Barnes. They agreed for me to come up for testing. My private insurances gives OK. I was scheduled for the initial evaluation Jan. 1998.

Jan 5-8, 1998 — Initial evaluation at Barnes consisted of 3 days on a rigid schedule of PFT test, CT-Scan, X-rays, 6 minute walk, flights of stairs (uuump), lab work and a heart catheter. Visited with Social worker, Dietician and of course a Financial Coordinator. Also met with the Senior Pulmonologist, Dr. Elbert Trulock and Dr. Patterson, Thoracic Surgeon.

Jan.8, 1998 — During a meeting with my Transplant Team; I was placed on the national waiting list for a double-lung transplant. (Waiting period 18-24 months)

June 98 — Another CT-Scan at local hospital. All appeared normal.

June1, 1999 — I return to Barnes for a 2 day re-evaluation. The CT showed a nodule on the upper part of my right lung. Dr. wants to wait four months for another CT

Sep. 28, 1999 — I will return to Barnes for another CT and consultation with Dr. Trulock. Then wait some more. (To be continued)

September 28, 1999 — Returned to Barnes to have a chest CT-Scan and visit with Dr. Trulock. Was told the nodule on my right lung had disappeared. I went through the post-education class. As was told that they would know more about where I stood on the active list by the 30^th.

September 29, 1999 — Gail and I explore St. Louis attempting to find housing to arrange temporary move to St. Louis. We found a suitable apartment and made minor arrangements to take it. We return home.

September 30, 1999 — Joanne Forriztal called me and stated it would be January 2000 before I get my beeper but possibly could be before.

October 5, 1999 — We decide to make arrangements to move to St Louis as soon as possible. We return to St. Louis to make the necessary transactions to make the move.

October 6, 1999 — All leases, deposits, hook-ups etc; are complete. Ready to move. We will be moving to St Louis around October 15, 1999. The waiting game continues. How long? We shall see…

Received the following from Jack’s wife on the second. I am trying to get addresses and will post those when available.

Sam Jack had another set back. He lost yet a third tube since coming home and they replaced it with a tube that was not big enough to do the job and now he is back in the hospital. They put in another tube with a box hooked on to it They don’t know how to handle the boxes here either. He is at OSU in Columbus. This is were two of the three tubes were replaced including the one that didn’t work. He lost some of the weight he gained and then some. They tell me he now weighs 103 lbs. They are going to give him something to pickup his appetite.

More when I get it.

— Sam-Ohio EFFORTS Resources Team

Age: 53
DOB: 7/12/46
City, State: IA
Date Listed: 12/31/98
TX Center: Barnes, St. Louis, MO
Type: Bilateral

December 29–31, 1998 — Initial evaluation Dates at Barnes. 3 days of testing and lab work. Placed on TX list 12/31/98 Advised 18–24 mo. wait. Scheduled to go back in 12–18 mo. for 2^nd evaluation.

Age: 48
DOB: 10/4/50
City, State: Dorset, UK
Date Listed: 2/06/98
TX Center: St. George’s Hospital, London UK
Type: Single Left Lung History:

I have Alpha 1 antitrypsin deficiency.

1. Jan 5-8, 1998 — Initial Evaluation
2. Jan 29 1998 — Accepted on the transplant program but they needed to redo left heart catheter test to decide whether they needed to transplant both lungs.
3. Feb 6 1998 — Listed for single left lung
4. April 14^th 1999 — Annual update blood taken for tests including liver function, and update on CMV status (I am CMV neg)

There are regular (normally every three weeks) Support Group meetings which you can attend if you are listed for either heart or lung transplant. One of the transplant co-ordinators sends a list of dates and topics and you turn up if you want to. The meetings last about 90 mins and give you a chance to get to know the transplant team and meet others who are waiting.

Please visit the Alpha-1 Support UK site at Alpha-1 UK Support Group

Age: 59
DOB: 8/20/40
City, State: Hermosa Beach, CA
Date Listed: 12/14/99
TX Center: USC University Hospital Los Angeles
Type: Bilateral

History: I was dx with COPD in 1995 at that time I was considered "end stage" Emphysema, I have had Asthma since childhood, at that time (1995) Asthma was considered part of COPD .

August 1999: My Pulmonary Doctor sent a referral to USC for TX evaluation .

November 16,1999 : First day of evaluation. Tests consisted of Blood work and PFT. Interviews with Transplant Coordinator, Transplant Social Worker and Transplant Financial Coordinator

Quick check up by Pulmonologist.

December 13. 1999: More tests, VQ Lung Scan, CAT Scan and Angiogram. And more blood work.

December 14, 1999; Received call from Transplant Coordinator to inform me that I am listed. I am on list for bilateral but if a single becomes available I will consider it.

Age: 60
City, State: Indianapolis, IN
Type: Single
Occupation: Retired

I was refered by my Pulmonologist to Dr Michael Niemeier at Methodist Hospital here in Indianapolis. My Wife and I met with him on Oct 13. I brought with me my latest cat-scan and x-rays. I was to come back on the 25^th and be admitted for two or three days for evaluation.

Arrived at Methodist Hospital at 7 Am on the 25^th and was admitted. Before I saw my room a heart cath was done with two hours bed rest. This was the only bed rest I would see for the next two days. Along with all the test I met with the transplant Pulmonologist, the transplant Surgeon, the Social worker, the Dietitian and the Physical therapist.

I will be notified on the forth of Nov. if its a go.

Posted: 10/16/99
Hi All — We leave tomorrow morning for the 2^nd testing phase for a possible lung tx.

It’s at UAB. Please touch me with a little prayer that I do OK and qualify. The testing takes 4 days and then we return home. On 3 Nov we go back for the final decision.

Take care

— Ron Riddle

Age: 61
DOB: 5/29/38
City, State: Nebraska
Date Listed: 7/14/97
TX Center: Barnes, St. Louis, MO
Type: Single

History:

1. July 11-14, ’97 — Initial evaluation consisting of 3 day testing program including blood work, treadmill plus floor walk, nuclear imaging lungs, meeting with dietitian, social worker, financial person, breathing tests [PFT’s] X-ray, and heart catheter.
2. July 14, ’97 — Put on waiting list
3. June 29, ’99 — Returned to Barnes for 2^nd evaluation after 24 month wait. Testing not too rigorous this time. Passed all but CT scan which showed a nodule on the upper lobe of each lung. Came home for another CT scan after a three month wait. The St. Louis scan films were sent here to my pulmonologist who didn’t like what he saw and immediately ordered a PET scan for me. The PET scan showed no malignancy. I take the next CT scan Sept. 20. Those films will be sent to St. Louis for Dr. Trulock to evaluate. If no change in the nodules, I’ll be activated again sitting at No. 6 and move to St. Louis.

Update: 2/21/01
TRANSPLANT UPDATE I moved with my daughter Leslie to St. Louis on January 29^th of 1999 to wait for new lungs. I was in rehab at Barnes Jewish Hospital 5 days a week and clinic every Wednesday. On February 10^th I came down with viral infection that sent me to ICU at Barnes. I was put on a ventilator by means of a tracheotomy and put into a medically induced coma for 13 days while large amounts of drugs were pumped into me to fight the infection. I began waking up around the 25^th of February. It took days to get to a semi-lucid state. About March 5^th, I was able to get out of bed and sit up in a chair for a few minutes at a time, with help from my nurses. I had gone from a 160 lbs. to 129 lbs., was fed through a tube in my nose, and had no energy whatsoever. I didn’t even have the use of my hands nor could I talk with the trach bypassing my vocal chords.

I was helpless. A very bad situation for a man who likes to be in control of at least something in his life. The bungle some ventilator tubes were very awkward to handle getting in and out of bed and would tire me out just getting to the chair. But it had to be done to begin building back up to be ready for surgery when it came. I had to be taught how to walk all over again. Parts of the brain just couldn’t wake up and get going. Very frustrating and scary. Thank God for my daughter Leslie and my fiancé, Patricia. They alternated staying by my side through this whole nightmare and on through my surgery.

On Friday night, March 16, 2000, we were told that lungs had arrived for me. I went into surgery at 9:00 a.m. the next morning. 6 hours later, on St. Patrick’s Day—March 17, 2000, I received the Gift of Life. Two beautifully functioning lungs. As they wheeled me out of ICU, Leslie said, "Guess what Dad, you don’t have emphysema anymore!" I looked at her and we both smiled ear to ear.

The next day, I was sitting up. The day after that, I took my first steps. By the end of week, the next best thing to receiving new lungs happened. The trach was removed from my throat. I was breathing on my own and finally relieved of the most terrifying piece of machinery I can think of…the ventilator. Although it is definitely a life saver, I hated that machine. I never did get onto breathing with it or letting it do the work. It was a battle to the bloody end, at least for me.

From the day the ventilator left my room, I have been progressing toward recovery.

I went to rehab and physical therapy 5 days a week in St. Louis. I had lost so much muscle and weight, it was a daily battle walking and exercising. The body wanted to do things, but the muscles weren’t there to accommodate it. It has taken a lot of work, but worth every step along the way. We packed up and headed for Omaha on June 16^th. I drove all the way home—455 miles. That was the most enjoyable drive I have ever done in my 62 years of living and 47 years of driving!

I now rehab at home every day which includes walking on the treadmill, weight lifting, time on the inversion bed, walking Miss Bailey (our Chocolate Lab), and just plain living again with my Patricia.

I’ll never be able to thank enough: my EFFORTS family, my friends, relatives, my doctors and their staffs, nurses, and all the wonderful people who stood vigil and sent prayers and good thoughts my way. God bless.

— Ted Schreiner

Date Transplanted: 9/13/99
Posted: 10/4/99
I talked with Beverly Spicer’s mother a few minutes ago. This is the latest information:

• Her mother did not go in today to see her, both needed a rest. She did call the hospital to get updates.
• The trach is now in and she is off the ventilator for now…
• Dialysis has been stopped, but may have to be done again. The kidneys seem to be giving her a problem…
• The doctors inserted a chest tube into the right lung for drainage—this is the ‘replacement lung’.
• They seem to think there is a small infection in the lung…
• Beverly is sitting upright in her chair more during the day. The doctors were worried for awhile about some bodily functions. They feel better now that Beverly did have a bowel movement today…

Beverly’s mom sends her love and to tell EFFORTS that she is still getting cards… Her mother is only opening the ‘local neighbors’ cards. She wants to be there and share the joy when Beverly opens the ones from EFFORTS herself…

That about covers Beverly and her current status.

Once again, the doctors are not alarmed about what is currently going on… Everyone remains upbeat about the recovery, as slow as it is, and it will take time…

Take Care,

— Tom

Posted: 10/11/99
I talked with Beverly Spicer’s mother 30 minutes ago. This is the latest information:(Almost a repeat of last week.)

• The trach is still in.
• Dialysis may have to be started again.
• Beverly’s stomach is getting swollen and the doctors think it is from the medications…
• The new lung is fine and it is doing very well… The doctors think it will be a little longer than normal to get her stabilized… and all systems under control.
• There IS improvement each day so things are getting better… but slowly.

********************************
Mom Spicer ask me to tell Gary, or someone who can, to please stop all EFFORTS email.
It has filled up her computer… She will let us know when to start back up… This could be another month or more…
********************************

Beverly is much more aware now but still cannot talk… she writes notes to her mother…

Once again, the doctors are not alarmed about what is currently going on… Everyone remains upbeat about the recovery, as slow as it is, and it will take time…

Take Care,

Posted: 10/11/99
I posted today about Beverly Spicer and her condition… I do not know what the hospital does with mail but the address below is where you can send a card…

It is checked everyday so it can get to Beverly…

Beverly Spicer
P. O. Box 76
Bel Air, MD 21014-0076

— Tom

Posted: 10/16/99
Update on Beverly Spicer and her condition:

I just got through talking with ‘Mom Spicer’—we are on a first name basis now. She is a joy to talk to and a breath of fresh air…… .

Bad News first:

Beverly is still in the ICU and on dialysis for the next two days. There is a ‘toxin’ in her system and they are treating that. Her hands and face are somewhat swollen.

Good News:

The new lung is doing fine. She IS getting better each day… somewhat slower that the doctors would like, but she is improving each and every day. Sometime this week they will do a trach and get the vent out so she can talk… The nurse opened Beverly’s eyes so she could see her mother… she shook her head in recognition. Beverly should be out of the ICU by the beginning of next week, if possible.

I will talk with Mom Spicer the first of next week… She did say the cards are still coming in and she sends her Love to the EFFORTS family…

It is another ‘Good Night’,

12/16/99 9:15 {est}
I just got off the phone after talking with Beverly Spicer’s mom. This is the latest information and it is about the same… but, it is getting better little by little…

Dialysis… is being done 3 times a week now. Her kidneys seem to be getting better but there is still some fluid retention.

We talked about the prednisone, which Bev is on, and Mom Spicer even knows about the problems it causes. She was not sure of the dosage but said that Bev was almost off the stuff before she went in.

The doctors told her it might be the end of January before she can come home… this is the first time they have mentioned a date… good news…?

She is still on medications to stop the anxiety attacks… It has now been 3 months since the TX and Bev did not want to be there for the Holidays…

She is still in the ICU and the new lung continues to function correctly… They just have to get all the other problems squared away… They are getting her up and walking—just a few steps but it is 100% more than a few weeks ago…

Beverly’s mom went to New York a few weeks ago just to get away…

Again, Beverly is still in need of all our Prayers and Get Well Wishes… and will be for some time…

Take Care and Have A Good Night, Tom

— Tom

DOB: 9/5/52
City, State: Illinois
TX Center: St. James Med. Center & Hosp. Chicago Hts, IL

I expect to be put on the list for bilateral transplant in October 1999.

Am currently in rehab and having tests. My next appointment is Oct 12th.

Will keep you posted.

Age: 48
DOB: 10/15/50
City, State: New York
Date Listed: Not listed yet. gave my doctor the okay to begin process 5/13/1999
TX Center: Brigham and Women’s Hospital, Boston Mass
Type: Single

After my doctor received the okay from MVP (HMO) fairly quickly( about three weeks) I was given an initial evaluation appointment on Aug 4^th. I met one doctor on the team and was told basically that it looked like I was a good candidate for transplant. They looked at cat scan and pft’s that I brought with me from Cooperstown (where my pulmologists works out of).

Further evaluations are being set up for me around Nov.1. this has been complicated by a change in insurance companies effective Sept 1, 1999. (to Blue Choice) Transitional coverage guaranteed. Well we shall see. This is not a procedure that I inquired about. this is a do or die order from my doctor I guess that’s what they have to tell us though or we would never do it!

Age: 47
DOB: 7/5/52 (celebrate birthday ALWAYS on 4^th).
City, State: Omaha area, Nebraska
Date Listed: September 30, 1999
TX Center: Fairview University Medical Center, Minneapolis, MN
Disease: Alpha1-antitrypsin deficiency.

History: Date of dx: 08/21/97. FEV1 at dx: 26% of predicted. Advised that transplant was only option for survival in May of 1998.

Fired from job 3 days after giving my supervisor a copy of my November PFT.

Began searching for lung txp center Feb 1999.

Turned down Lincoln Neb hospital,(4 txp’s in 3 years) April, 1999.

Turned down by Loyola (Chicago, Illinois) June, 1999.

Accepted by Fairview University Medical Center (Minneapolis, MN) Sept 17,1999 Listed FUMC Sept 30, 1999