Low Blood Pressure and Cold Sweats

Yesterday was our Saturday overnight with Layla.  She looks forward to this every week, and even though I didn't feel great I told her O.K.  As it turned out Britt didn't bring her over until after 5:00.

I fed her dinner and got her bed and put it in my room then started feeling really sweaty, cold and dizzy.  I took my blood pressure and it was 90/62.  Low for me.  So I woke up Bill.  This was around 6:30.  He got up and had me get my Jammie's on and get in bed with my feet elevated.  He told Layla she could be my nurse and take care of grandma.  The both took my blood pressure until it got above 100 then Bill went to bed leaving Layla to take care of me.

She lotioned my feet and legs and told me I didn't even have to pay her for it this time!  LOL  She took my blood pressure about every 5 minutes until I told her it was almost 9:00 and her bedtime.  So, with her snuggled in her bed and Priscilla and I curled up in my  bed we slept until this morning at 6:30 when I heard a little voice saying... grandma can you turn on cartoons for me? This woke up Priscilla who began to roll all over the bed, which made Layla get up in bed, which left me no room so I got up.

Today my chest hurts.  I have that familiar pain mostly on the left side but more so in the middle.  At times it is sharp, other times just dull enough to let me know it is still there.  My blood pressure is bouncing from 100/80....good.....  to 89-90/74..... which is low.  so..I am just laying around trying to be calm and relaxed.

I don't know if this is part of the infection I had or have... or if it new?  I think it could have something to do with my Thyroid.  My neck and throat seem to really be sore the last few days.

We'll see next week when I hear from my Primary care doctor.  I'll try and keep up and keep you all informed.

More concerns

Today was my Thyroid Ultra Sound.  Bill was to go with me, but remember a call he needed to make so he couldn't make it.  This seems to be a pattern where my doctors visits are concerned.  I want him to be involved, to hear the steps I need to take, to hear the shape I am in, to know what to avoid and what is expected of me.

Any way... the Ultra Sound.  During the ultra sound the tech found a small nodule on the upper right side of my throat/thyroid.  She also found calcification in the middle of the band in the center of my throat.  She also found my lymph nodes enlarged.  What does this mean?????  That IS the question of the day!  She couldn't tell me.  She said my doctor would have the results this afternoon.

Of course me being a curious one...(not such a good trait at times) I got online and Googled "Thyroid Ultra Sounds/nodule/enlarged lymph nodes.  NEVER DO THAT!!!  Of course every article I found scared me.  And, Bill is sick and has been in bed since the afternoon... so I sit here concerned and trying so hard not to be.

It just seems like ONE MORE THING.  How many times do I need to say  ONE MORE THING?  It seems like for the last 3 years I have had to deal with just one more thing.  I am tired of things.  I am tired of worrying, not sleeping, being preoccupied and missing out on chances for happiness because I am so preoccupied with sickness.

I will wait patiently for my doctor to notify me of my Thyroid results and the outcome from talking to my Gynecologist.  I am going to practice patience.  I haven't had them so far, so we'll see how that goes.


I had a friend who I met on BecomeAnEx.org (the best quit smoking site there is) introduce me (through Face Book) with a man that has had a Lung Volume Reduction Surgery at University of Washington.  It has been about a year and a half he said.  He was not on oxygen prior to surgery and his oxygen saturation level was better than mine.  But he said he is doing fine.  That the doctors told him the surgery is not life saving but prolonging.  And, there could still be transplant in his future when the time comes.


This all makes me just want to get to Stanford and talk to the doctors, go through their testing and be reassured that my fears are viable and can be set to rest somewhat.  By knowing about small things like housing, traveling expenses, family accommodations.  All these things are things I worry about on top of the medical aspect.

I just feel odd tonight.  Like there is nothing I can do to settle myself.  I tried playing Face Book games, playing with Priscilla, talking to friends.  Nothing.  I came here to blog which usually lets me get out my feelings, frustrations and fears ... tonight not so much.

Just Breathe

I have nearly quit feeling sorry for myself.  Why do I feel the need to have these days.... I do not know?  I am beginning to feel more frightened and worried.  I assume this is normal when having your lungs removed from your body is in your future.  The thought of that just seems like death to me.  I don't mean to be graphic but that's the picture in my head.

I did not sleep through the night after hearing the news until Sunday, my mind just would not turn off.  I wondered about leaving Bill and Brittney and how they will get along.  I know Bill will be fine, lonely but fine.  But, I worry so about Brittney because we are so close.  And, Layla too.  She is at the age where she will miss me.  This is all I thought about the next 2 or 3 days. Well, today is Tuesday.  It's been 5 days since my Dr.'s appointment and I am O.K.

I have been reading all the information that was sent home with me and have found out that once approved and listed I need to be ready for surgery.  Makes perfect sense.  My body needs to be free of infection and healed from any surgeries.

Well... I had went to the Gynecologist which referred me to a Urologist to have testing done on why I am leaking urine?  My Urologists appointment was today but I canceled it because of our recent snow and I am sick again.  I have rattling in my lungs and a fever then the chills, and green sputum coming up when I can cough something up.
So... I am back once again on Prednisone and a Z-pack.

I got off track there for a minute.  lol
Back to the Gynecologist and Urologist.... I initially went to the Gynecologist because of leaking urine, he wanted a ultra sound done which found my Uterus is almost double in size and I have a 8.2 cm fibroid tumor that is growing on it.  He talked of a hysterectomy to remove my Uterus and the tumor... but first wanted a Urologist to do a specific test to see about my urine leakage.

Well, when I called the Urologist to reschedule the person on the phone told me I could get in March 5th, but it would not be for the test, just a consultation first then he would schedule the test for a later date.  This could be one to two months down the road... then to send the test back to my Gynecologist, have him look it over and then make an appointment with me to discuss it... then to schedule the surgery either here or in Medford which would be another 1 to two months.  So...
I called my Gyno yesterday and of course I couldn't speak to him, I spoke with his nurse.  I tried to explain to her that YES, I initially came to him for bladder leakage, but now I am willing to live with that and now I need to have the hysterectomy ASAP.
I explained to her about going to Stanford within the next 4 months and prior to going I need ALL surgeries done and to be 100% healed.  That they do not like to do surgeries after transplant because of the anti-rejection medications and the risk of infections.
She kept telling me she would talk to the Dr. and call me back.  Finally she said that the doctor would talk to my Pulmonologist and get back to me.

Today I talked to my Pulmo's nurse (whom I adore) and she said she agreed with me.  That the urine leakage is not convenient but not life threatening, and I could deal with that... but the fibroid tumor growing on an enlarged Uterus is something that needs attention.

So, I called my trusty Primary Doctor and when she called back I explained to her about everything.  She said she would act as my liaison between all my doctors and try and get these things, including my thyroid done quickly and she would get back to me next week.
Whew!!!!!!!

I have decided since talking to a friend who is in North Carolina at Duke University waiting to be listed that I will feel more comfortable with all this after I can get to Stanford and talk to the doctors and staff about what will happen.  There is just so much unknown right now.

I have developed a decent attitude.  I am just throwing my arms up in the air and letting things go as they will.  I have no control now.  I put everything up to my doctors.

I can report that I am still losing weight.  I am down to 190.4  I feel like I am losing more inches than weight.  I am happy with my progress anyway.  I feel confident that I can reach my goal of 175 by June.  Hopefully more.

Well, I am tired, my meds are taken... my eyes are getting droopy and I feel like my eyes look.  More later.

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.