FAQ for Lung Transplant

FAQ: Lung Transplant

• How do I know if I need a transplant?
• How will a transplant change my life?
• Is the evaluation very difficult?
• How long is the waiting list?
• What happens when an organ is available?
• Is the surgery very complicated?
• How long will I be hospitalized after the transplant?
• Do I have to stay near the hospital after the transplant?
• Will I have pain after the surgery?
• Can my family stay with me?
• When can I drive? When can I return to work?
• What medications will I take after the transplant?
• How long does it take to fully recover?
• Will my insurance pay for the transplant and follow up care?
• When do I get the beeper?
• Is there a support group for patients going through transplant?

How do I know if I need a transplant?

Some patients with severe lung disease may benefit from transplantation. Your cardiologist or pulmonary medicine specialist may refer you to a transplant center for an evaluation. The purpose of the evaluation is twofold: first, to determine the severity of your disease and whether there are any more conventional treatments; and second, to determine whether you would be able to survive the transplant operation and have a good long-term result afterwards.

How will a transplant change my life?

A successful transplant will dramatically improve your symptoms of lung disease. Many transplant recipients can perform the same physical activities and enjoy the same quality of life as normal people. All transplant recipients, however, are committed to daily drug treatment and close medical supervision for the rest of their lives.

Is the evaluation very difficult?

The transplant evaluation is very thorough. In addition to specific lung tests, tests are performed to determine the function of all the major organ systems, screen for infectious diseases and cancer, and try and predict how well you and your family will cope with the rigors of the transplant regimen. Many of the tests, even the complex ones, are fairly well standardized and can be performed in your local community. Some tests may require you to be admitted to hospital briefly. We require that every potential candidate make at least one outpatient visit to UCSF Medical Center to meet with the transplant physicians, coordinators and social worker. Typically, most of the evaluation can be completed within a week or two. The transplant team meets weekly to discuss patient evaluations and make decisions on appropriate treatment. Patients who are felt to be good candidates for transplantation are then put on a national waiting list.

How long is the waiting list?

Unfortunately the waiting times for organ transplants are long. In 1996 in the United States, the average wait for lung transplantation was over a year. Each patient on our waiting list returns for an outpatient visit to our transplant clinic every two to three months or more frequently if necessary. While many patients can wait at home, sometimes it is necessary for patients to be admitted to the hospital to maintain them in satisfactory condition until transplantation.

What happens when an organ is available?

When the transplant team decides that a potential donor is suitable for one of our recipients, we call their home phone number or page their beeper. It is not possible to predict when a suitable organ will become available and there is a limited amount of time to be able to recover the organs successfully. It is very important that we be able to locate the recipient quickly and get him or her into the hospital in a timely fashion.

Is the surgery very complicated?

This depends on your specific situation. The transplant surgeon will review the details of the surgical procedure, the risks of the procedure and the expected post-operative convalescence during the evaluation interview.

How long will I be hospitalized after the transplant?

This depends on your specific situation. Although patients can recover sufficiently after lung transplantation to be discharged within 10 days, it is more typical for patients to be hospitalized for two weeks or more.

Do I have to stay near the hospital after the transplant?

Most patients are discharged home after transplant. Although we do not have any specific requirement about staying close to the hospital during the early post-transplant period, the frequency of follow up visits and lab tests during this interval can be a problem for patients who live far away. The social worker can help you to locate guest housing in the area.

Will I have pain after the surgery?

Generally, most patients do not report a lot of pain. You will have an incision that does cause pain and discomfort when coughing. We will give you pain medication and specific instructions to lessen the pain.

Can my family stay with me?

Your family can accompany you until you go into the transplant surgery. While you are in the intensive care unit, family members may not stay in your room. If you require assistance with locating guest housing, a social worker will be able to help you. We have very open visiting hours and encourage family members to be present. If your visitors are ill (flu or colds), they should not visit you. This is to protect you from the infection.

When can I drive? When can I return to work?

You may drive after two to three weeks, once your incision is healed. You may return to work after two to three months from the transplant surgery

What medications will I take after the transplant?

You will be on three main immunosuppressive (anti-rejection) medications after transplant. Along with the immunosuppressive medications you will need to take several preventive medications against infection.

How long does it take to fully recover?

It generally takes three to six months to fully recover from the transplant surgery. Age and previous medical history problems may cause the recovery period to take longer.

Will my insurance pay for the transplant and follow up care?

We have a financial counselor who will verify your insurance. We will obtain authorization for your transplant and follow up care.

When do I get the beeper?

You will get a beeper after you are placed on the transplant waiting list. Since this is a free program through the LifePage Program, it may take several weeks for your paperwork to be processed and for a beeper to be issued to you from the local pager company.

Is there a support group for patients going through transplant?

We have a support group for patients on the waiting list and post-transplant patients. You will be notified of the support group meetings and the topic each month.

Reviewed by health care specialists at UCSF Medical Center.
Last updated February 2, 2012

This information is for educational purposes only and is not intended to replace the advice of your doctor or health care provider. We encourage you to discuss with your doctor any questions or concerns you may have.

Lung Transplant
Recovery

Once your surgery has been completed and the lung transplant is a technical success, the issue of successfully living with a transplant becomes quite involved. The two major issues are rejection and infection.

Lung transplant recipients undergo specialized rehabilitation programs. The transplant team follows patients throughout this process -- and for the rest of their lives. Patients are seen as needed in the outpatient clinic. A transplant expert is available 24 hours a day, seven days a week for questions or consultation.

Rejection and Infection

Rejection is the natural process of your body that recognizes your new lung as being foreign to the body and attempts to destroy it. This reaction originates within your immune system. This is similar to the way your body identifies a splinter in your finger as a foreign object. The redness and inflammation in the area of the splinter is an immune response. To prevent rejection, you must be treated with immunosuppressants, medications that interfere with the body's normal immune response.

We expect that you will have episodes of rejection in the first several months after transplant. The treatment requires that you receive doses of the anti-rejection medications intravenously. You will require frequent blood sampling to determine the levels of immunosuppressant drugs, as each individual is unique and requires an individualized approach. The goal is to find the lowest immunosuppressant dose that will prevent rejection and therefore minimize the risk of infection and side effects from the medications. Failure to take these medications will result in the rejection of your new lung.

Because your immune system is suppressed to prevent you from rejecting your new lung, you will be more prone to infection. We will monitor your temperature for sign of infection and your count for white blood cells, which help fight infections. Infections are generally treated with antibiotics and you will be asked to take certain medications on a regular basis to prevent certain types of infection. You may have to undergo intermittent short courses of intravenous antibiotics. The signs of infection are redness, swelling and tenderness at a surgical site. A new lung infection may begin with a mild fever, new cough and change in lung secretions.

Reviewed by health care specialists at UCSF Medical Center.
Last updated February 16, 2012

Lung Transplant (procedure)

Lung Transplant... Procedure

You can be called into the hospital for the transplant at any time. When the call comes, you will proceed to the Intensive Critical Care Unit (ICC) to prepare for surgery. Then you will be transferred to the operating room.

The surgery takes from six to 10 hours, depending on medical conditions. After surgery, you will go back to the ICC. From there, your are transferred to the cardiothoracic nursing unit, depending on your condition. The expected length of stay for an uncomplicated lung transplant is eight to 21 days.

If you are having a single lung transplant, the incision will be made on your side, either right or left, about six inches below your armpit. Your old lung will be removed through this opening and the new lung will be implanted. In the case of a double lung transplant, the incision will run across the lower part of your chest. The lung, whether single or double, is connected to the pulmonary artery, pulmonary veins and the main stem bronchus or airway. The incisions will be uncomfortable and will take several weeks to heal.

Lung Transplant (evaluation)

Lung Transplant
Preparation

Evaluation

Patients must meet a broad range of physical and psychosocial criteria to become eligible for transplantation. A social evaluation determines if transplant candidates have the psychological stability, motivation and personal support to meet the challenges of transplantation. Then the patient and family meet with the team of experts who will be with them throughout the transplant process.

Each patient's team includes a transplant lung specialist called a pulmonologist, transplant surgeon, transplant nurse coordinator, transplant social worker, psychologist and physical therapist.

• The transplant pulmonologist completes a physical examination and determines the cause of disease during the selection process. The pulmonologist reviews the patient's current medications, assesses the risks and benefits of transplant surgery, and makes recommendations to the team. In conjunction with the team, the pulmonologist remains involved throughout the transplant process.
• The transplant surgeon completes a general surgical evaluation, reviewing any previous operations and assessing the risks and benefits of surgery. In consultation with the other team members, the surgeon makes recommendations for transplantation. The surgeon follows the patient before transplant, performs the transplant, and continues following the patient post-operatively and after discharge.
• The thoracic surgeons who perform the lung transplantation will meet with you for a surgical consultation. They will discuss any previous abdominal or chest surgery that you may have had and describe the surgical plan for your transplantation. The thoracic surgeon reviews your medical plan-of-care daily with the surgical resident and nursing staff. Additionally, he or she will see you in clinic after discharge.
• The transplant nurse coordinator organizes all aspects of care before and after the transplant. The coordinator oversees the selection process and facilitates communication among all members of the team. In addition, the coordinator provides patient education, coordinates testing and follow-up care and maintains records.
• The insurance coordinator reviews the patient's available insurance to ensure that the patient will not experience financial hardship related to the transplant or postoperative and discharge care and coordinates insurance coverage with outside case managers.
• The social worker completes a psychosocial evaluation and provides support to the transplant patients and their families throughout the process. The social worker also makes recommendations to the team regarding the patient's psychosocial status, commitment to transplantation, and relevant financial issues.The social worker for our Lung Transplant Program will meet with you to review the program in detail and to provide any patient educational assistance you will require preoperatively.
• Long-standing lung disease can strain your heart so you will need to be evaluated by the transplantation cardiologist. He or she will examine you and will also review your medical history, electrocardiogram and echocardiogram. The cardiologist may recommend that you have a further study of your heart with a procedure called a cardiac catheterization. This procedure will be scheduled by the Division of Cardiology and may require an overnight stay in the hospital.

Persons with cystic fibrosis are required to consult with an ear, nose and throat specialist. If minor sinus surgery is required, a short hospital stay is arranged. Several other team members conduct appropriate specialty evaluations when indicated and make recommendations to the team. These include but are not limited to the anesthesiologist, cardiologist, psychologist, intervention counselor, infectious disease specialist, hematologist and physical therapist.

Transplant candidates undergo a battery of tests that may include routine blood work, electrocardiogram (ECG) and other radiological and diagnostic procedures. UCSF Medical Center uses state-of-the-art imaging technology to obtain the most accurate diagnoses. After the medical work-up, our team designs care plans for each patient, drawing on resources from a variety of disciplines, including social work, nursing and nutrition. Patients are never out of touch with the team: an expert who knows about each case is on call 24 hours a day, seven days a week.

Eligibility

To be eligible for a lung transplant, you must meet the following requirements:

• In general, you must be physiologically 60 years of age or less for bilateral lung transplantation and 65 years of age or less for single lung transplantation. This means that your physical condition must at least meet the typical condition of someone 60 years old or younger, or someone 65 years old or younger. Your chronological age is not a factor.
• You must have a poor prognosis, with an anticipated 18 to 24-month survival.
• You must have no other life-threatening systemic disease.
• You must have demonstrated absolute compliance with medications and medical recommendations, and have good rehabilitation potential.
• You must demonstrate emotional stability and must have a realistic understanding of the implications of organ transplantation.
• You must have a supportive social support system.

Once all the interviews and tests are completed, the members of the transplant team review the information and make a recommendation about treating your lung disease. They may suggest further testing or other therapies prior to considering a lung transplant. It is important to remember that lung transplantation is not appropriate therapy for all patients with lung disease.

Waiting for a Lung

If accepted as a lung transplant patient, you will join many other patients who are awaiting a transplant. You will be seen on a regular basis to monitor your progress. If you are not accepted initially as a lung transplant candidate, the reasons for the decision and any further testing and therapeutic options will be discussed with you and your referring physician.

As a result of your lung condition, you may have several associated problems that must be addressed. These include:

• Shortness of breath and increased oxygen need.
• Decreased activity level.
• Wasting of your muscle groups including respiratory muscles, postural or trunk muscles, and your arm and leg muscles.
• Cardiovascular deconditioning.
• Fear or anxiety due to breathlessness.

Evaluation in a pulmonary rehabilitation program is essential if you are considering transplantation. It is important that you be in the best physical shape as possible at the time of your surgery. Lung transplantation will improve your shortness of breath and oxygen need. Therefore, you will be introduced to the importance of exercise and activity before your transplant. This will include training your respiratory muscles as well as a biking or walking program for general conditioning. You will need to continue this program even after your transplant occurs.

We also require all patients to have an annual flu shot, a pneumonia vaccine, up-to-date tetanus shots (within the last 10 years) and H.influenzae B. vaccine.

After being approved for transplantation, patients are immediately put on the United Network for Organ Sharing (UNOS) lists. Your placement on the waiting list is determined by the severity of your condition and the likelihood that your transplant would be successful, known as your lung allocation score. Those with higher scores get higher priority when a compatible lung becomes available. During the waiting period, UCSF Medical Center provides a network of support for patients and family members, including a long-running, popular support group.

A new lung or lungs will come from a person who is an organ donor. This person has suffered an injury to the blood supply to the brain, which results in "brain death."

Organ procurement organizations work to match donors with people who are awaiting transplants. This matching is based primarily on the size of the donor and the blood type and is started through a computerized listing created by UNOS. A transplant team removes the lungs from the donor and brings them to UCSF Medical Center. While this is happening, you will be notified to come to the medical center. You will then be transferred to the operating room where an anesthesiologist will prepare you for surgery.

Reviewed by health care specialists at UCSF Medical Center.
Last updated February 16, 2012

I got the news I have been dreading!

"It gets under your skin, life. ... It's a habit that's hard to give up. One puff of breath is never enough. You'll find you want to take another."
- Terry Pratchet, Hogfather

I found this quote this morning and it seems to fit.

Brittney and I went to my Pulmonologist's appointment yesterday afternoon.  I thought it would be a breathing test called FEV1 and then have the doctor tell me the disease had progressed and come back in 6 months to watch further.  I was dreading hearing that it had progressed, but I knew it.  I have felt it... I just didn't want to hear how much.

I have a entire page of #'s.  I have forgotten what they all mean.  I had forgotten as soon as I left the office.  I walked in damaged but hopeful that I would continue on like this, maybe taking things a little slower.  I left with actual words that scared the hell out of me.

Words like, one bout of pneumonia could kill you.  Without surgery or transplant your days are numbered, maybe a couple years.  

They will be sending my file to Stanford University and are pretty sure that I will be qualified for a surgical procedure there.  

That they will contact me, and if my stats meet their criteria I will go there for a few days of testing, then if the tests meet their standards I will either receive Lung Volume Surgery or a Transplant.  

I asked my doctor "If I were your wife, sister or mother what would your recommendation be?"  I told him transplant just scares me terribly and I would like to use that as a last resort.  That if I had any say in this I would like to do the Lung Volume Reduction Surgery first which would buy me 5 years or so, and then I could be listed for transplant.  He said after transplant he could say the average life span is 10 years.  He said people live longer than that, it will all depend on my body, my heart and how well I handle the anti-rejection medications.  

He also told me that I may want the reduction surgery first, but it will inevitably be Stanford's decision as to which will fit me best.

After the testing yesterday and the news I came home and told Bill and he had little reaction.  I want a reaction from him!  I did tell him that I NEVER want to hear from him again that "I deserve this because I smoked and he tried to tell me." And that "I told you so".  Then he found beer and started drinking so I went to bed at 7:30.  Not so much because I was so tired, but because I had a terrible headache (which I am sure was just stress caused), and I was beginning to have chest pain... which meant an anxiety attack was coming.  I took meds and was asleep by 8:00.  

I have been up since 2:30.  I was tossing most of the night, I couldn't shut my brain off and all I could do was think about surgery, what if I didn't make it through... how would Brittney and Layla take it and handle losing me?  You know the gruesome thinking that comes when faced with mortality!  I hate going to that place... but I can't help it.

My brother called not long after I got home from the doctor and like he knew something was going on he asked how I was doing?  So, after explaining things to him, he suggested I start going to church.  I have never been one to go for organized religion.  I believe in god and was raise in an Episcopal church.  I feel awkward about going now and asking for prayer only because I am  sick.  

I was glad to talk to him.  He said to keep him updated and we would try and move mom's memorial gathering ahead to maybe May if needed.

I can't imagine that Stanford will get back to me that soon.  I expect months.  We'll see.  In the mean time.... I plan to live.  

Like each time I get bad news... I need a few days to absorb this, to feel a little sorry for myself and to panic...... Then I will pull myself up and get on with things.  

Turned 50 and Dr. Appointments

I have been running out of O2 very quickly.  Within an hour the tank is empty, which makes going anywhere a pain.  Today Bill and I took all the empties back and asked what the problem could be.  She told me I am needing more oxygen!  (shit)

So, I moved up on size canister to the C tank.  The next size is the ones that come on a metal hand cart with wheels.  I told her I have to hold off no matter what until after June, because I need to climb a mountain to go visit where my moms ashes are scattered.  Then if necessary I'll go to the bigger tanks.

I have an appointment with my Primary care Dr. tomorrow.  It will be a busy one.  Since she went out on maternity leave.... they found the 8.2 cm cyst on my uterus, I had a cyst removed, I had an emergency room visit.  I think my Thyroid is coming back again.  I feel that same soreness in my throat and am having swallowing issues and cramps in my neck.

I have another appointment for more breathing tests on the 16th, then on the 20th I go to Medford for a horrendous bladder test.  That will determine if my hysterectomy will be performed in Medford or Klamath Falls.

Besides that I need to talk to her about changing anti-depressants or seeing a counselor, or both.

That's my month in a schedule.  I'll trade anyone of you.

My newest turning 50 photo.  I just look tired.

We tore down a wall today

Bill and I are clearing the slate and starting over. We both decided 29 years is too much to throw away.

When Life throws Rocks at you.
It is your Choice.
To make a Bridge or a Wall. ♥

This is what I posted on my face book page this afternoon.  Most of the morning Bill and I spent talking, sometimes yelling and me always crying about what our plans are and why I want to move out.  I told him I was almost afraid of loving him.  I told him that words spoken hurt and I am not sure I can forget them or think that he will change.  Of course, I told him I know  so much of this is me and has all come closer to the surface since I have been sick. He continues to tell me that I have changes, that I have been cruel to him and Brittney.... I have been more honest I think.  If I have been cruel... I feel terrible, because I have never been cruel to either one of them.  They are the two most important people in my life.


So, I called my Primary Care doctor and left a message asking her to please find a counselor for me ASAP.  That I am in great need to talk to someone.  


I printed out the "letter to my family" that sits on the right hand side of this blog of mine... below the list of blogs.... and I asked him to please read it, that maybe he would understand more of what I am going through.  I asked him if he would accompany me to my doctors appointments from now on.  I want him to understand what a daily struggle it is just to dust and do dishes.  Yes... some days I can get out and walk and come home and cook dinner.  But those days are getting fewer and fewer apart.  I push myself (I think) sometimes far more than I should.  I try and come across as though there is nothing wrong with me, because to admit I can't do something is to admit I am getting worse.


I felt like I wanted to run and just be alone.  To have just me to answer to.  To not have to feel guilty when I see him doing dishes, or laundry or cooking or yard work.  Really... what good am I?  I would think anyone in their right mind would want to run when given the chance.  
I cannot stand the me I have become.  And, as a wife or partner, I have nothing to offer.  I have hardly any sex drive, and it's been like that for some time now.  I am not sure if it's the cannula around my face, my leakage of urine, my medications?  I really don't know... but like I told him today... what is there left to be attracted to?  I feel so damaged and used up.  


After going over and over everything wrong we decided we can work on it and put all the words and past behind us and try again fresh.  
This time with the understanding that he needs to come to therapy with me and have both of us on the same page as far as my disease, and my limitations.  I think a counselor will do us both good and hopefully show us there is much to salvage.


Over the last month and all this with Bill and I ..... I have also learned (which should have been a big DUH!!) that I need to learn to treat Brittney like my daughter.  We can still be close, but if I am having problems I need to find someone else to confide in.  She has her own life and it is full right now.  It won't mean we won't be as close, but it will mean that we can each lean on other people.  


What a day it has been.  


I am not sure when I will see a counselor, I will have to wait for my insurance to approve one and my Primary Dr. to find me one who she thinks will be compatible with me.  I'll let you know.

A day that felt cursed

This is partly an update on Bill and I, but also some new developments with my breathing.. my oxygen supplier.. and my Pulmomologist.

First things first I guess.  Remember I had asked my Pulmonologist if he classified me as terminal and he said yes, of course.  Today his nurse called and said that they had sent the necessary paperwork to HUD.  Then she asked if I could come in and do a breathing test, she said that my oxygen supplier had mentioned that I am going through much more O2 tanks lately so she wanted me to take off my O2 for 45 minutes and then come in and do some testing.  Well... that is fine and dandy, but being without O2 and "walking" anywhere is impossible.  Well, not impossible but really stressful and my heart rate will begin racing.  This happens at 2:00 tomorrow afternoon.  I'll let you know how that goes.  I am afraid that if they need to increase my O2, then I will be moved up to the larger tanks that come on wheels and are about 3ft or more tall.  Another ego thing.  At least now I can keep the O2 canisters in my handbags.  A look at the bright side, I will once again be able to use my designer bags.  :)

Next today... Brittney called and wanted to know if I could pick up Layla.  She wasn't feeling well and Britt couldn't get out of class.  So, I went and picked her up and tried to convince her if she was sick she had to lay around in bed and watch her cartoons.

While I was going back and forth taking care of Layla, I told Bill about my Dr. appointment tomorrow and how they had sent my "terminal" form into HUD.  He says... he has been thinking and he only loved 2 women in his life... his grandmother and me.
He said he wants to change and make us fall back in love again.  I told him yesterday when he made some remark about me staying here in the house for a year, that I couldn't.  That he will get drunk next week or next month and I will once again be making up all my medical issues, that my mother will still be a way to get at me, that mentioning my family upsets me.. nothing will change.  A sober man is one thing... a drunk man on pain meds is something different.

I knew this would happen the longer I am here.  If I go back this time I am doomed to live with this the rest of my life because I will not be strong enough to fight and to move in the years to come.

With every time I turn him down or tell him it's over I cause pain. And, I didn't start this... and I don't want to be the one to hurt him.  I will always love him, I just can't live with him.  Maybe our perfect relationship will be to live apart and date????  Who knows.

I told him we can't talk about this in front of Layla and then the phone rang.

Britt's friend since 4th grade is like a daughter to me.  She actually asks for me when serious issues come about instead of her  own mom.   Her and Britt decided to get pregnant together.  Well, Beck got pregnant right away.... Britt and Fernando are still trying.  About a month ago at an ultrasound appointment they found out he (the baby) had a heart defect that would mean surgery as soon as he was born then 3 more surgeries.  And at around age 15 he may need a heart transplant.  Of course we were all devastated and have been trying to help Beck hold it together.  She is about the most sensitive child I have ever seen.  I say child... she is 32.  They just got back from a children's hospital in Portland after spending a week there they were optimistic.  The doctors even told her to go ahead and make plans for a baby shower, start buying him clothes.... that they will be fine.  She was going back to Portland the last month of her pregnancy so once born they could take him directly to surgery.

Tonight she lost him.  So I went directly to the hospital.  She is of course devastated as is her boyfriend (they have been together for 12 years or more).  She had started to have contractions then they stopped.  They want her to have a vaginal birth.  She is suffering, not knowing if she should or could hold him once he is delivered, she goes from a feeling of relief that he wasn't born and she got to know him and bond with him... then felt guilt because of how she was feeling.  I tried to tell her whatever she is feeling will be a range of emotions and she may change her mind numerous times.  The doctor came in and said it may take 9hours, to 15 hours, to 2 days to deliver him.

I just feel so bad for them. Brittney is spending the night with her and doesn't have school tomorrow so can be with her.  I told her I will come up in the morning and check on her.  I am just heart broken for them.

I heard the word TERMINAL for the first time

Yesterday I went to my appointment at the HUD office.  She told me that with the economy the way it is they are taking very few new cases.  Then she looked at my oxygen and asked if I "was terminal"?  I have never thought of that.  That word never crossed my mind.  I said I honestly don't know, my condition is non reversable and progressive.  She asked if she could call my dr. and I gave her my pulmonologist's # and who to speak with.

She told me that if I am terminal my name will go to the front of the list when they start new vouchers.

After we (my friend went with me) left I took Kathie home, then went to my doctor.  I asked to speak to his assistant... she is who I usually see unless there are decisions to be made, or an exam to be done.  I asked her if we could go into a private room.  I told her that I was leaving my marriage and that I had to been to HUD and what the worker had asked me.  She said.... I will talk to the doctor to make sure but Kellie.. "Of course you are".

It just made a difficult day frightening.  TERMINAL!  wow!

We had Layla here tonight so Britt could study for some tests and she seems to be doing fine.  I think it helped her seeing us together. I started today going through closets and separating things... his bedding, my bedding... my paperwork out of the filing cabinet/ his paperwork.  If I just do it little by little then what either of us or Brittney doesn't want I will sell.  I may get a storage for a little while until I figure out what size place I will end up with.

So far Bill and I are doing fine.  There has been a few uncomfortable situations, but for the most part life is going on as usual, which is good, but troubling.  I don't want to give him the idea that things can go back to the way they were.

I am not strong enough to live with someone who doubts my illness, who blames me for being sick and who at times just wants to pick a fight.  Between my breathing issues when I get upset and my anxiety it has been bad.

Separation hurts everyone

I have little words to say that will ease pain or make anyone  feel better.

Bill and I seem to be doing fine today.  We even talked about the split of furniture, T.V.'s, dining table... household things that we have acquired over a lifetime together.  We watched T.V. and even laughed during dinner.  We both understand that it's over, and seem to have almost come to terms with it.

Still when I think of not seeing him everyday, or having him move away and out of my life forever seems unbearable.  I can't have it both ways.

Brittney told Layla tonight and Layla called gasping/bawling and wanted to talk to her Papa.  Britt told her that Grandma is moving out of the house and Papa will move away in a couple years.  She said it will be like when they were in Idaho.  Only Brittney isn't handling it well either.

This is on me.  It was my decision that our "marriage" or being a couple had gone on long enough.  I told Britt that I put this off while she was in school so she wouldn't have a broken home.  I put this off after she moved out because I was afraid to be alone.  I feel like if I don't stand up for myself now I will be lost forever.  I am NOT being dramatic.  That is how I feel.  I told her I would be giving up the rest of my life if I didn't leave now.

Unfortunately, My needs are hurting my family.  Funny how to save myself I have to cause pain to those around me who I love the most.  I told Bill today I will always love him and care about him.  I want to see him happy and living life like he always wanted to.  I also want us to remain friends.  Is that asking too much?

All I know is hearing Layla on the phone tonight and trying to reassure her broke my heart into tiny pieces.  Then after Brittney got Layla calmed down and into bed she called me and told me she doesn't blame me but she feels like a child having her parents split up and it is breaking her.  She'll get through it.  We all will.

I go to HUD in the morning to see if I can get any housing.  I'll let you know.  The sooner this can be resolved I think the better for all of us.

Taking the next step

Bill's birthday was yesterday.  Brittney and I had bought presents and had invited a few friends over for pizza, beer and cake.  Layla wanted to come over early in the morning (they didn't have school Friday) and make her Papa breakfast.  

Thursday afternoon Britt, Fernando and I had been shopping for his birthday.  When she dropped me off back at home is when he informed he was done.  And, I agreed which I think pissed him off more.

Any way... I called Brittney after he closed his bedroom door for the night and told her to make up some excuse for Layla, but considering what took place that day I didn't think having Layla around us being tense and I wasn't even sure we would be speaking would be a good idea.
As it turned out his daughter Lexi called him to say Happy Birthday so I gently opened his door and handed him the phone.... then Priscilla pushed her way in.  Soon after he got up and I wished him Happy Birthday and he seemed fine, almost happy.  Which pissed me off and confused me because my eyes were so swollen from crying all night and I was almost freaking out wondering what would happen the next day.

Then when Britt went to school that day she dropped Layla off for a few hours while she went to school, then she came back at 5:00.

For his birthday he wanted a nice expensive queen sized flocked inflatable air mattress to replace the one we had so when we went camping this summer we could use it.  He drank all day and most the night and was happy and carefree.  Everyone here knew about it, I think he was the only one he fooled.  At one point he grabbed my butt... then opening presents he opened the air mattress and said... this will be great when we all go camping, Kellie and I will sleep good on this.   ?????  I did not make eye contact with anyone. I felt foolish and a little mad.

Less than 24 hours prior to that he told me I was unlovable and he didn't love me, and was SO ready to move on.  Now he was patting my butt making plans for our summer.

So everyone went home, he passed out, Layla spent the night and we stayed up playing cards and watching cartoons.  When we got up this morning I fed Layla and she was playing for a while.  Brittney called and asked if Layla wanted to go home and said she would come get her.

After the kids left almost as the door shut I looked at him and said... we won't be using that air mattress together.  And, I would appreciate if you don't grab my ass anymore.  That nothing has changed and just because he may have sobered up, what was said ... was said for the last time. I told him I wanted so much for us to respect each other and our time together, to be nice to each other, so today was almost pleasant.

Tomorrow I have an appointment with HUD to see about getting a 2 bedroom something that will allow me to keep Priscilla.

I will no longer hear I am used, damaged, deserving of this because I didn't listen to him and quit smoking.  I will no longer be accused of making up illness's or not "pulling my share" around the house.  I want the chance to be happy again.  To prove to myself that I am worth something.

I am in such a confused state.  I have love for Bill.  At one time he was good to me, even when drinking.  Then 15 or more years his drinking became a problem.  He would get confrontational and argue anything.  He would say terrible mean things, then the next day be perfectly find and even get pissy if I suggested he was out of control.  When he was good he was lovable and caring and helpful.  When he was bad, it was abusive.  Never physically, just loud, and mean and scary.

It will be peaceful for me to be able to not be on the lookout for an angry housemate.  I think I will be able to feel better about myself.

I have NO idea how I am going to afford to be on my own.  I never planned for this and everything is in his name because of the medical divorce we did.  So I guess once again I am at his mercy.

He says he will help me monthly.  We'll see.  I told him I wish him happiness with someone he can do all the things he wants to with.  And, I really mean it.  I think it has been over with me for so many years that I am O.K. with him moving on.

As for me.  I am not sure if I trust love anymore.  I am not sure I can actually love someone, or if anyone would even want to be with me and my disease.  I have felt damaged for so long, how could I expect anyone else to see me any other way?

There are so many uncertainties right now.  I am throwing my arms up and hoping I make the proper decisions and not hurt anyone.

I just want to be at peace for a while and be loved.  And, I am not sure that will ever happen again for me.

A painful ending.

I have not much to say tonight.  I am heart broken and feel empty.  My relationship with my husband (ex) of 29 years has ended.  I am doing my best to keep things civil and not comment or get involved in bickering.  I would like nothing better than to remain friends and just understand that we can't be together anymore.  I don't think he feels that way.

I am now trying to figure out what to do about where to live.  He seemed to think we could live together until he finishes work on the house (which has been going on for about 8 years) and we can sell it and split the proceeds.

I am trying to get on HUD housing and find a 2 bedroom apartment or duplex or something.  I can't do yard work and I will have Priscilla with me.

I am afraid.  I am kind of in shock.  Even though it was mutual and I had been talking to my daughter about ending things, it just took me by surprise tonight when he said mean and hateful things.  Attacking my mother who has passed away.  Saying my anxiety attacks are fake and just for pity or attention.  That I can do a lot more than I am doing.

Enough.  I promise I will not trash him.  He is a good, kind man.  It's just a sad ending to a relationship that lasted over half of my life.

Transplant and depression

The other day I was ready to give up and ask Bill to leave.  It had come to that.  I still am not ready to take all the blame for our troubled times, but I know a good portion of it is my depression.

I look back on my life and wish so badly I could make the right decisions.  To live healthy, to raise Brittney in a non-smoking house.  She has moments that she says she is ready to quit, but she isn't there yet, and she is turning 30 this year.  She has a daughter who watches her smoke.... I am so afraid that the pattern of disease will just continue and continue.  I am ashamed of myself for exposing them.

I did get some good news, or at least news that eased my mind a little.  Every since the day years ago when my Pulmonologist mentioned Transplant to me and had me pick a hospital.  Then the University of Washington told me that I would need to re-locate to within 2 hours of the hospital, I was freaked.  I did not want to give up my home and my life here.  After all I am supposed to recover and be able to come back to my previous life right?  I didn't want to move to Seattle.

Well, I was picking up a new fancy regulator for my O2 tanks and the woman there (who treats me very well) said that one of her clients just was transplanted at Stanford Medical Center (my 2nd choice) and is doing well.  They (the oxygen company) is supplying her with all her O2 needs, a hospital bed, a I.V. pole on wheels, pretty much any needs that the hospital doesn't supply they pick up.  She said that her husband travels back and forth monthly, usually spending a week at a time there.  The best part is that she (the woman at the O2 company) said that her insurance and mine are the same and that they have a contract with this medical center and not the University of Washington.  I am kind of put as ease by that because Stanford was my first choice, I just didn't think we could afford to live there.  The cost of living in the Bay area is outrageous.
I would need to go there for about a week and they have hotels that give rates to their transplant families, for testing and getting everything gone over.  Then I would have an interview with the transplant team.  They make the ultimate decision if I am a good candidate and if I am they will list me.  I can COME HOME and wait!!!  Yes, my insurance company will allow me to come home and Stanford is O.K. with that because once my name comes up, I will be Life Flighted directly to the hospital and prepped and into surgery with time to spare.

This had been like a burden sitting on me for a long time.  I talked to Bill and he said that sounds good that once I am stable and doing well he can come home and then just visit once a month.  Maybe even (depending on the time of year) Brittney could come for a visit, and maybe even my brothers.  And, the best part is we don't have to re-locate.

I got a call yesterday from my Gynecologist, they have finally gotten a referral for some more testing in Medford (which is about an hour or so away, but over a mountain pass).  They are supposed to call me to set up an appointment.

I am still doing alright on my weight loss.  I am finding that if I weigh every day my weight will fluctuate, but if I just do it once a week I can see my progress.  Besides that I can feel a difference in my stomach and legs.

I'll blog again soon, and hopefully I will find something wonderful to blog about.  :)

Depression

I have never felt so empty, misunderstood, angry or depressed than the last 3 days.
Yesterday Bill was moping around (it just seems to be a pissing contest over who feels worse... I gave up) and I told him just out of the blue... that I am not happy and asked him if he was?  He looked shocked.  I don't know how he could be surprised.... we hardly speak, he is gone most of the day to god knows where, then comes home... starts drinking then is off to bed by 6:00.

To make a very long a exhausting story short... I told him that I will not live my life like this.  That I take as much responsibility at our failed life as he should, maybe more.  I just don't want to go on like this.  I want to be happy.  To feel loved and safe.  I do not right now, and haven't in a long time.
He didn't have much to say except for it was my fault.  I asked him if he could honestly say he loved me and he never did answer.  He asked me the question and I told him I do at times, but other times I don't even feel like we are friends.  That even roommates would talk more, do more and be kinder to each other.

Yes..... he takes care of the things around the house that I can't.... but honestly I can hire that done.  I do not mean to sound ungrateful because I appreciate everything that he does.  However... there is a price to pay for that, and over the years I have just paid and ignored the fact I was living in a marriage I was not happy in.  Then it got to be habit forming, like a comfortable pair of slippers. Yes, they have holes and flaws, but they always are there to cover you when you need it.

Anyway... I gave in AGAIN this morning and just asked to be loved.  I told him if he couldn't do that to do the right thing and just leave.  The day went on just like every other day.  Him gone, me on the computer, him home with a drink or three and in bed before 7:00.

Then Brittney calls me and tells me I am giving up.  I tried to explain to her that I am not.  There are just some things I can't do. She wanted me to go sledding and I tried to explain I cannot do that with a cannula and hosing around me and my face.  Not to mention being out in the cold and having cold air rush across my face.  She actually got pissy with me and said "Don't say I can't."  Has she not been paying attention to my health????  I GET IT!
I don't give up, and I haven't given in.  I told her that if I were to give in it would be very easy.  I would stay in bed like I feel like doing until 10:00 or 11:00, that I would take naps, I would just sit and not worry about my weight, about getting dressed, about pushing myself to even vacuum my own house.  That just shopping is a OUTING, not just someone running to the store.  She knows all this, she has been to the Pulmonologist with me, and even to the cardiologist.

I am So Above being frustrated at my life that I can no longer hold on alone.  When I see my Primary Care Doctor again at the end of this month or the beginning of Feb. I am asking for a referral to a counselor.  I need to find happiness somehow.  I will never be suicidal, but I can't imagine going on day after day the way I have been.

I love Brittney more than life itself and I don't blame her.  She is trying to do the right thing and push me to do more and keep moving.  It's just right now I feel like if I am pushed I will lose myself.

I went to the Gynecologist yesterday to talk about the results of the ultrasound.  He wants me to see a urologist before anything else is done and go through this certain test.  Well, the only Urologist in Klamath Falls has left, and the nearest town will not take my insurance.  So, he wants me to go to Portland which is about a 8 hour drive from here through the snow and bad weather to have this test.  Then depending on the results either whomever sees me will do surgery on my bladder and then do a hysterectomy or I will be sent home because my bladder problem can't be fixed and he will do the hysterectomy.  Nothing with me is easy.  He said the tumor growing on my enlarged uterus is about the size of a small cantaloupe.  Awesome... remove it and there is weight loss!

I started this P.I.N.K. program and have been doing everything it asks...... except that I eat everything I am not supposed to at night before I go to bed.  Even with that I have lost nearly 5 pounds.  I am trying to be strong and fighting my night cravings.  I'll let you know how that goes.

So... welcomed to my life... wanna run now?

10 Days, 4 Pounds

I had to look back at my beginning day.  I have lost a total of 4.2 pounds in 10 days.  I am still staying on the reset for another couple weeks.  I want to feel comfortable enough with my good eating habits before I start the next chapter.

There will be a few days coming up where I will be off the diet.  One Bill's Bday is the 27th of this month, and my Bday is the 7th of next month.  We will celebrate with family and cake and presents for Bill's.  But, I am turning 50 and I want to remember it somehow.  A good meal with friends, a movie, a night out.  Something other than sitting in this house.

I have been weighing myself every morning on this diet and some days I will gain 8 ounces to a pound, and other days I will lose 2. So... I think I will begin to weigh myself once a week.  I have noticed that this diet like every other one I have been changes my digestive progress.  So I am sure day to day the pounds will go up and down.

Another E.R. Visit

This will be quick.  I am feeling bad.

Yesterday Bill and I went grocery shopping and about half way through I told Bill my chest was feeling tight.  By the time we got home I couldn't take the pain anymore.  As it was Britt was on her way to the house so she took me up to the hospital and I spent 5 hours in the Emergency room to have them tell me I was having an anxiety attack.

I know these are real, but it makes me feel like I am one of those nervous types of women who can't handle stress or problems and get the vapors.  I am a strong person and I can handle pain.

This pain was mind blowing.  Like someone had a hold of my chest ripping and twisting.  They finally gave me knock out medicine and sent me home to sleep it off.

That worked fine until around 3:00 this morning and I have been up every since.  Today is better, but my chest is on the verge of incredible pain.  Does that make sense?  It seems like one big cough, one twist or pull and the pain will return.  Any way, I spent the day reading and napping.

A note to self

I just wanted to note to myself for my doctors visits......

For the last 2 1/2 weeks or more (months I think, but getting worse) I have had leg cramps, feet cramps, toe cramps... and cramps in my neck and shoulder that wake me up at least 10 or more times a night.  I have to jump up from bed and walk around, or jump up and down, or stretch my feet, or bend and stretch my neck and shoulder.  It wakes me up before... I can tell by the movement of my foot or neck that it is coming quickly and soon I will have to get up and move.

I have tried and am still eating 2 banana's a day.  I have began to drink many ounces of water a day.  It happens if I have been up walking through the store all day, or at home standing in front of the counter cooking, or just sitting in my chair all day.  So... there is no pattern to it.

I also think that because of my lack of exercise my back is beginning to bother me more.  I have pain meds and take the prescribed amount... but they are just not working.  I have noticed my back laying in bed starts to hurt and I am constantly moving around all night.
My restless leg syndrome is getting worse, or the medicine has outlived it's usefulness.

My breathing has not improved at all.  My lungs feel so tight.  It is hard to get air out at all.  It seems I can breathe in alright, well I still can't take a deep breath in all the way... but getting air out seems impossible.

I have been getting dizzy spells, sitting or standing up.  My memory issues still are concerning to me.  Bill swears I use it to my advantage, but it's bothersome and scary to me at times.  I would swear my life I hadn't said something, or done something... and Bill tells me different.

I need to keep notes on the things that are bothering me, wrong with me, are ailing me... for when I see my primary doctor again.  She is coming back to practice at the end of the month.

I am going through the phase where I am sick and tired of this.  It makes me selfish.  I get so wrapped up in just getting through the day that I neglect my friends and family.  I am normally not a selfish person.
I just want to scream at times.
Bill and I have been struggling again.  For no apparent reason, other than I think he needs a break as a caregiver.  I have been trying to talk him into going and visiting a friend, or his daughters, do some golfing... or just hang out.
He told me today or yesterday that I couldn't take care of myself anymore.  That may be true... but I didn't want to hear it.
It is just a reminder of how much ability I have lost.

There are days when I go to the store, where I actually glance over at those carts.  I swear I will not get in one.  I will stay home first.

I have an appointment in February with my Pulmonologist and they will run their tests to see how my breathing is doing.  It's called an FEV1 test.  And the number will tell them if this is progressing and what the next steps will be.

I also in February will turn 50.  My god, look at what has become of me!

Laughter may be bad for lungs

COPD PATIENTS WITH SENSE OF HUMOR FEEL BETTER, BUT LAUGHTER MAY BE BAD FOR LUNGS

                                               

                                          Ohio State University Research News

COLUMBUS, Ohio – Having a sense of humor is associated with improved emotional functioning and an enhanced quality of life among patients with a chronic lung illness, but the actual act of laughing out loud can reduce lung function, at least in the short term, research suggests.

The study evaluated humor and laughter in patients with chronic obstructive pulmonary disease, or COPD. Participants who exhibited a greater sense of humor were more likely to report fewer symptoms of depression and anxiety and better quality of life, and tended to report that they had experienced fewer respiratory illnesses in the month before the study.

But patients who watched a 30-minute comedy video and laughed during the viewing had lower pulmonary function afterward than did patients who watched a home-repair video that did not prompt laughter.

COPD is a chronic, progressive disorder characterized by difficulty breathing, and especially in expelling air from the lungs. It is the fourth-leading cause of death in the United States, affecting more than 12 million people, according to the Centers for Disease Control and Prevention. COPD patients are at increased risk of experiencing depression, anxiety, a diminished quality of life and frequent respiratory illnesses.

The pattern of findings in this research suggests that appreciating and perceiving humor may have a different effect than laughing aloud for patients with moderate to severe COPD, researchers say.

“This study shows that humor is really more complex than people make it out to be,” said Charles Emery, professor of psychology at Ohio State University and senior author of the study. “Yes, humor definitely has benefits, but the behaviors associated with humor in fact may not be good for all people all the time – which is a useful thing to know.

“Because these patients are at risk for depression and anxiety, one implication of this study would be that encouraging or even teaching people to use humor as a way of coping may actually be a novel way of enhancing their well-being.”

The research is published in the current issue of the journal Heart & Lung.

Kim Lebowitz Feingold, lead author of the study, performed the research for her psychology Ph.D. dissertation at Ohio State. Now director of Cardiac Behavioral Medicine at the Bluhm Cardiovascular Institute of Northwestern Memorial Hospital, Lebowitz Feingold said the project grew from her interest in the field of positive psychology.

“We wanted to look at positive attributes or traits associated with improved physical or emotional health. I’ve long been fascinated with the idea that laughter and a sense of humor can be positive for well-being,” she said.

Previous research had suggested that humor is beneficial to healthy adults because it can improve mood and strengthen immune function. Laughter also had been characterized as a behavior that may help expel stale air from the lungs. The researchers sought to determine whether the benefits of humor and laughter could extend to people who suffer from COPD.

“We know the negative emotional consequences of COPD. So I thought it was an ideal condition to serve as the focus of an examination of the potential benefits of humor and laughter,” said Lebowitz Feingold, also an assistant professor of psychiatry and surgery at Northwestern University.

Forty-six COPD patients participated in the sense of humor portion of the study, and of those, 22 participated in the portion of the study that the researchers called “laughter induction.”

All participating patients completed a number of questionnaires to assess their sense of humor, psychological functioning and health-related quality of life, as well as a brief interview about recent infectious illnesses. The assessments included the Coping Humor Scale, which measures the degree to which someone uses humor to cope with stress, and the Situational Humor Response Questionnaire, which counts the frequency of smiles, laughter and other so-called mirthful behaviors in a variety of situations. Measures of depression and anxiety symptoms were used to evaluate psychological functioning.

In the laughter induction, patients completed pulmonary function tests, and reported their mood and the severity of their shortness of breath symptoms immediately before and after watching a 30-minute video. After being randomly assigned to either a neutral or humor condition, participants watched either a neutral instructional video or their selection of one of three comedy options: Abbott and Costello, Bill Cosby or a segment of funny home videos.

As expected, the COPD patients reported more impaired psychological functioning, lower quality of life and above-average anxiety in their daily lives compared to national data on these symptoms in healthy adults. Patients also had reported an average of five sick days on which they experienced infectious illness symptoms in the previous four weeks.

But on average, the patients also reported that they used a sense of humor in their daily lives. Out of a possible score of 24 on the Coping Humor Scale, this patient sample’s average score was 19.3. As a group, they were less likely to report use of mirthful behaviors to express humor, scoring 56.6 out of a possible 105 on the Situational Humor Response Questionnaire.

An analysis of association between the patients’ sense of humor and well-being measures suggested that the higher their score on the sense of humor scales, the lower were their symptoms of depression and anxiety. A sense of humor was significantly associated with enhanced psychological functioning and better quality of life. And though the relationship was not as strong, a higher sense of humor score also was linked to fewer recent sick days.

Emery noted that because of the nature of the study, the researchers can’t be certain which came first – the sense of humor or the better well-being.

When it came to laughter, however, the results were a surprise. Patients watching comedy videos did laugh more than patients who watched instructional videos, as expected. But follow-up pulmonary tests showed that those participants who laughed also had more air trapped in their lungs afterwards, a sign of reduced lung function.

“During laughter, we’re expiring more air than we’re inhaling so it’s a potential way of ridding our lungs of stale air. COPD is characterized by this increased air trapping, so our hypothesis was that laughter would reduce some of that trapped air,” Lebowitz Feingold said. “But in hindsight, the findings make sense. With laughter, people also are introducing an increased amount of air into their lungs compared with a normal breath. These patients have trouble getting the air out, so they are taking in more air with laughter, but they cannot easily expire that air, leaving them with increased trapped air following laughter.”

She noted, too, that the study measured only the acute response to laughter.

“We can’t tell if this effect is cumulative, how long it might last, or whether it has any impact on physical health or pulmonary function long-term,” she said.

Co-authors of the study include Sooyeon Suh of the Department of Psychology and Philip Diaz of the Department of Internal Medicine, both at Ohio State. 

I wanted to post a note to this.  Since diagnosed I have had opportunity to laugh and be happy and didn't notice any change. The thing is it was just a ha ha laugh, not a belly laugh.

At Christmas on two occasion's I had an actually belly laugh, no stopping, tears streaming, can't stop... kind of laugh and noticed that even while I was out of control laughing my lungs burned.  It was like I voided them of all air, but couldn't stop laughing.  It was scary.  I have a problem emptying my lungs anyway... and when there is no air there it is frightening.  I excused myself to the bathroom both time with my O2 until I felt better.  But after both episodes I felt queasy and dizzy.


So... is laughter the best medicine?  I guess yes, unless you have severe Copd.